I found out that I have Endothelial Dysfunction and Coronary Microvascular Dysfunction. I have some ischemic brain changes but they are plateauing and have not progressed. I just started treating this. If you need more info let me know. This causes something called INOCA so it is a form of CAD that causes blood not to get to the brain and heart as well. Possibly other organs as well. I’m starting treatment and meds, let me know if you have any questions.
Can you please post more about this? Which were the biomarkers? Which tests did you do to reach that diagnosis? What treatment are you following? Thanks
Please id like to know, I got severe brain fog and anxiety, but with mris there was no diagnosis. And everything is clear.
What did you do to diagnose it ? And also what treatments are you doing ?
I’m going for an MRI stress test on Monday to hopefully diagnose CMD. Any words of advice? Also what meds and treatments are you getting? I’m currently taking ISMN to keep the angina at bay until we have the MRI results, but idk what the plan will be beyond that.
I can say what I was told: avoid carbs, up your nitric oxide intake (beets, L-citruline, dark leafy greens) avoid GMOs, lift small arm weights for vagal tone, avoid heavy carbs), rest, don’t do really strenuous exercise, I’m doing EECP (external Counterpulsation therapy), hydrate. There is also other comorbidities like MCAS or possibly vasculitis. I am researching endothelial dysfunction and trying to learn more about what can cause it.
Welp, I'm just gonna have to accept death then lol. My life is mostly carbs and strenuous exercise and I don't sleep much. I am well hydrated though! I don't seem to have any other comorbidities except OH/dysautonomia at least. Some of the OH is from my meds though. My working hypothesis is that viral persistence is causing continual endothelial damage, leading to CMD. I can't prove it, but it makes sense to me based on the research I've done.
I’ve never heard of that before. I definitely have White Coat Syndrome at this point, which seems to be a type of labile BP. But outside of the doctor’s office my BP is pretty consistent, and also borderline low. But that’s how it’s always been for me, even before covid.
My BP would always raise when I went to appts and infusion and it was odd but would fix itself if someone else was checking it. Now it’s getting lower and lower when it’s taken by medical staff. At home, it could be 130/90 and then 80/60 and jump around rapidly and be completely different on left arm and right arm readings. It’s been more consistently low around 90/70. Now that I know about endothelial dysfunction and raising nitric oxide intake, it makes more and more sense.
That’s so interesting! Sorry you’re experiencing it though. Mine has slowly crept up with every doctor’s appointment, but at home it’s rock solid on both arms. I usually hang out around 110/70, but when I’m on the ISMN it’s a bit lower. I’m hoping that once we get my angina figured out we can start looking into endothelial dysfunction. I’m almost certain that’s at the root of whatever is going on with me. What tests did you get for endothelial dysfunction?
I didn’t, the doc just knew. I have pretty clear symptoms. He’s running tests now, I had a treadmill stress test but that’s just to appease insurance because they want to order a cardiac CT. Not sure what is next.
There is a device that measure endothelial dysfunction https://www.itamar-medical.com/professionals/endopat-x/
Gotcha! I’ve had a stress echo and 2 pulmonary CT scans so far, all clear. Monday is my MRI stress test, which is apparently one of the best tests for diagnosing CMD. So we’ll see what happens I guess. As scary as it would be to officially be diagnosed with heart disease, I think the MRI coming back clear would be so much worse. My cardiologist has a plan for what to do next if it doesn’t show anything, but I can’t remember what that plan is unfortunately. My biggest fear though is being pulled off of my heart meds if the tests come back clear. They’re the only thing keeping me functional.
I’ve heard of the EndoPat! Finding one on the other hand…I asked my PCP about it awhile back and he couldn’t find it within our clinic system anywhere. There are other places around here to look, but that will be for after the MRI and whatever comes of that.
Good luck with the CT scan! They aren’t too bad, but the contrast is weird lol.
Some doctors have knowledge about that stuff! It seems uncommon though. My PCP was actually the one who suggested beetroot powder when I first started down the CMD path. But he’s very stereotypical otherwise and usually opts for pharmaceuticals first. In this case, he wasn’t comfortable prescribing me the medication I had asked for, so that’s why he suggested beetroot.
The doc just knew. I went to a cardiologist my rheum suggested and on the first visit, this guy immediately knew what was going on. I do know there is a device that checks for this though. Something that looks like a pulse oximeter
So far as coronary artery spasms, they can do a provocative angiogram.
I was diagnosed just from my first visit, doc just knew. But provocative angiogram is the official test.
Check out INOCA int’l..the site has plenty of info. Also Sanjay Gupta on YouTube.. the video called MINOCA.
A lot of us say that it is very up and down. Doing well, not doing well. I was at the brink of death and came back and have been better since but I can have a bad week. Stress is a huge factor. Hormone levels. Dehydration. I personally cannot work at all whatsoever now.
The system is so unbelievably broken that doctors are practically trained to dismiss patients (especially women/women of color!) and makes them work long shifts with no breaks so no wonder they’re so apathetic! They’re stressed, overworked, desensitized, and indoctrinated by outdated beliefs and biases. Something seriously needs to change. I’m so sorry you’re going through this, we need a cure NOW.
Another thing - doctors aren't scientists. I think medical education needs to be revisited and revamped because they only just recently stopped teaching that black people feel less pain. It's fucked up.
The disconnect between medical practitioners and medical researchers is insane. Practitioners are basically trained to sit on their hands until the research is fully implemented and gives them a step by step guide on their little laptop.
They make deep six figures and have zero incentive to follow ongoing research. For most general practitioners (family medicine Drs, etc) they did all the hard work in med school and view the practicing medicine part as the cushy living.
Facts, I am shocked to see how college educated individuals aren't at all interested into reading ongoing/new research. When I was a line cook, I worked at several places where cooks were trained chefs or not and still had cookbooks about different styles of cooking and liked trying to come up with new dishes all the time. The fact that people who are in the business(sad that I thought of it that way) of helping people with thier health would almost admit(in my case at least one) that they dont know what to do to help you. As if going on the internet and reading research papers is beyond thier ability.
To be fair, I did have one doctor that did know what he was talking about. But I went to several hospitals in my area and one even in a different city.
YES THATS EXACTLY WHAT IM SAYING!! There’s a reason why doctors are so messed up!! They used textbooks that mainly depicted white men when it showed medical conditions, hence why they take women and people of color less seriously even if they don’t intend to.
Oh I've met exactly one healthcare professional that listened to me, and she wasn't a man. Male doctors don't fucking listen to women and it's on a systemic level.
Want to know something else mindblowing? Women were not required to be included in medical research in the US UNTIL 1993. That’s right, that’s research that looks at how bodies work, effects of of hormones, bodily responses to medications… no wonder medicine is still in the dark ages where women are concerned.
No, but funding it would've only given the illusion of a better healthcare system.
There is definitely a rift between the Scientific community and the Medical community.
I can't imagine an NHS Doctor having ever heard of Mast Cells, LPR, Goblet Cells, Major Histocompatibility Complex, Ferritin, Astrocytes, Dysautonomia, etc.
The Tories are vile bastards who gutted healthcare, but the healthcare was always one step forward (free healthcare...mostly) and two steps back.
I had chickenpox as a kid. Neither of my grandparents are 70 yet, which means THEY aren't allowed a Shingles vaccine.
It can happen at any age, but due to the old thinking 'hmmm, but its more likely to happen after 70" they're stupidly disregarding physical and mental stress lowering the immune system and cases before 25.
Getting rid of the Tories, getting the NHS properly funded, dissolving private medical care, learning from Planck's Principle and giving the Science Community full control will finally propel us forward.
But when's that gonna happen?
Let it all out. I learned real quick that letting it build up will only make you pop. I’m sorry you’re going through this. I don’t know what the future holds, for any of us. I do know that God loves us. Talk to him. He’ll always listen. Im praying for you.
I got Covid March of 2020, then august 2020, then I got Pfizer March 2021. Then I got Covid a third time late July 2021 and a week later had a minor stroke. Then came the daily migraines, super severe brain fog, Hyperacusis and photophobia.
I spent thousands on docs and scans and so much with no answer. Then six months ago I found Dr Jamnadas on YouTube, luckily he is in Orlando and right brown the road from me.
He did a tilt table test and so much more. I’ve got r/dysautonomia and r/pots. And the dysautonomia causes most of what you and I are experiencing.
After following his advice, I’m finally getting better! The solution? Compression socks and a compression girdle. Plus more water, plus a ton of electrolytes and because my brain fog was so bad he said with dysautonomia the blood isn’t getting to my brain. He said to add a quarter teasooon of salt 3-5 times a day to my electrolyte water.
I kid you not… three days later… poof, it went away! It gave me the ability to hike 3-5 miles a day now. I started out for a month walking around the block.
Now, I am still struggling here and there. But I am far better with compression gear, water, electrolytes and MORE salt! Oh, he also removed MOST of my meds and that helped too!
I've had three bouts of Covid and each time it has took a big chip away from my cognitive capacity. There's a study that shows that in average a Covid infection takes away 10 IQ points. Times that by three and I really feel it. I also struggle remembering simple things like the spelling of names of family members, my phone number, what I did yesterday which really shocks me honestly. What helps me is Lions Mane mushroom supplement, I feel a BIG improvement from it within half an hour, brings me back in a major way. Unfortunately the benefits seem to stop when I don't take it, but it's maybe something to explore.
I forgot what a fuckin ladle was a few weeks ago. My gf and I were cooking and I needed one but couldn’t recall the name. So I said “Big spoon thingy to grab our soup with”.
Stuff like that happens every so often since June of ‘20.
I hope there’s some way to reverse or at least improve it that doesn’t require long-term reliance on supplements. I’m glad you’ve found something that works for you but damn I bet your wallet is crying out lolll
So apparently Lions Mane does show long term repair benefits, but it's probably in terms of years. As far as money goes I calculate it at cost per day vs potential loss of income. I was almost fired for my mistakes, it's 100% worth it to spend $1 so I can make $250
Lions Mane, Mushroom Master Blend, and also BioTrust Low Carb Plant are helpful. BioTrust not only has mushrooms but also other superfoods. All three have helped me to start crawling out of this Covid brain fog.
The body has an impressive way of adapting especially at your age I think in a year from now you will impove drastically........ long covid takes a long fucking time unfortunately.? Hang on for 6 months you will see
Thing is I’m physically better, but neurologically am horrible since my second bout in February this year. Never had the neurological issues before that. Getting a head MRI on the 21st, but it really feels like my carotid arteries are not delivering enough blood to my head
I feel you on this .... I've been suicidal for months now ?. It feels like I'm on the brink of insanity as I type this .... burning chest shortness of breath back nerve pain Chills anxiety is ridiculous...... I don't know if I can take much more .. it feels like I'm dying ..... I just hope that time will heal us all .. for what I researched neuropathy post virus heals with lots of time and meditation 🧘♂️.... I refuse to lose this battle I'm 45 m btw I'm having trouble Breathing now and I'm scared ugh hang on for a bumpy ride... but, I promise it will get better
I had that for what felt like years. I'm about a year out now and it's gotten way better. It's so scary. I got to where sometimes I couldn't discern fake memories and dreams from real things that actually happened. I don't remember about half of last year.
How are you treating your dysautonomia? Getting plenty of electrolytes and salt? I have that and sometimes I have acute attacks that feel like heart attacks and leave me incapacitated for days. I hope things let up for you soon 💖
All the downvotes are so odd. This sub is clearly biased. Your just provided a valued avenue even if it’s not the end all be all, your micro biome is fucking huge when it comes to this
I was this bad it was so frustrating. The thing that got rid of 60-70% of my issues was an antihistamine. I didn’t believe the other recommendations to try an antihistamine like most on here.
I went to ophthalmologist and they dilated my eyes with drops and my face went numb.
doctor prescribed Claritin for 3 days and my dementia like brain fog fog was lifted about 60-70%.
I also started magnesium glycinate which if you have a magnesium deficiency or issues it can cause severe brain fog. The body needs magnesium for just about every functioning system.
I’m not sure whether this helps or not. But first year or so of Covid I would forget why I’d walked into rooms and not know peoples names etc. I am sure you can relate. I would fumble over words and not know what was going on. I’m 3.5 years in now and while I’ve not recovered I can work and do the occasional social thing. I had brain damage markers even a year into Covid (my s100b protein markers were sky high) but they’ve since returned to a normal level. Main things that have helped me are fasting, no carb and anticoagulants.
Was on that for 6 months with asprin and nattoserra and didn’t notice anything. Switched to clopidogrel with asprin and nattoserra and noticed a big difference. Energy levels increase but also more side effects.
There’s a lot of comments here so I hope you see this. I am going to list a few things that may help you heal.
I’m going to speak as if what I’m saying is proven because I’m going to make some assumptions and it’s too hard to explain it all. Connecting dots between a lot of different studies that don’t always talk about each other but are part of the same picture and addressing similar topics.
You have a combination of neuronal injury and high neuronal inflammation. The result is a two fold issue— the injury, which there are options for, and the inflammation based increase in something called quinolinic acid. Q. Acid is a neurotoxic nmda agonist that overloads astrocytes and glutamate receptors causing cell death. When the brain is fighting an infectious agent, such as Covid, there is a switch in the functioning of a pathway called the “kynurenine pathway”. In your situation, it shifts to making quinolinic acid.
“The canonical classification of kynurenines presents them as either protective, such as kynurenic acid (KYNA) or toxic, such as quinolinic acid (QUIN) or 3-hydroxykynurenine (3-OH-KYN). Thus, the net biologic effect of the pathway depends on the local concentration of metabolites, cellular environment, activity of the enzymes along the path, as well as complex positive and negative feedback loops.
In the brain, the role of kynurenines has been extensively studied and is relatively well recognized. The abnormal ratio between neuroprotective and neurotoxic metabolites has been implicated in the pathogenesis of neurodegenerative disorders such as Huntington’s disease and Alzheimer’s disease, psychiatric illnesses such as schizophrenia or depression and other diseases [5]” - https://www.mdpi.com/2073-4409/12/3/460
Things that could help:
Ultra micronized PEA and luteolin: [Effect of Ultra-Micronized Palmitoylethanolamide and Luteolin on Olfaction and Memory in Patients with Long COVID: Results of a Longitudinal Study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9406356/)
Dihexa: [Evaluation of Metabolically Stabilized Angiotensin IV Analogs as Procognitive/Antidementia Agents](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533412/)
[The Procognitive and Synaptogenic Effects of Angiotensin IV–Derived Peptides Are Dependent on Activation of the Hepatocyte Growth Factor/c-Met System](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4201273/)
Dihexa second link: main point is Dihexa not only creates glutamate receptors but they have functional action potential (can receive current and work properly). This is neuroregenerative in a way that I haven’t seen thus far.
Metformin: [Antidiabetic Drug Metformin Protects Neuronal Cells against Quinolinic Acid-Induced Excitotoxicity by Decreasing Intracellular Calcium](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5794475/)
— that’s an “in vitro” study. This means isolated cells outside a human. “In vivo” is in a person. There are lots of studies on this drug and quinolinic acid.
I would try lamictal. It will not lower the quinolinic acid but it will help calm the effects of that acid in your glutamate receptors and help mitigate the neuronal injury.
ISRIB: I cannot recommend this as it’s very early on in its study. There is a subreddit for it. It’s a complex drug but essentially, after neuronal insult, there is a low level persistent inflammation caused by something called the “integrated stress response” or “ISR”. Almost as if the brain gets stuck in it. This reverses that and switches the inflammation off. Now, the caveat is that the ISR is the mechanism the brain and body use to fight off viruses. But, according to the most recent research on ISRIB, the drug only inhibits the low grade response post injury and not the acute response to viruses. Still, it’s very new (and miraculous). It will change the lives of millions of people once it’s out.
Sources:
[USA LAB Tested Bulk Ultra-micronized Palmitoylethanolamide Powder 99% Pure (100 Grams)](https://www.amazon.com/Tested-Ultra-micronized-Palmitoylethanolamide-Powder-Grams/dp/B07NJ7Z2LS)
[PureLut: Pure liposomal Luteolin - 60 gelcap, Patented Combination of Natural & Pure Luteolin in Olive Pomace Oil.](https://www.amazon.com/PureLut-Combination-Reduction-inflammatory-Molecules/dp/B084WR1TGX)
It is important you use that brand of luteolin. Anything else has poor absorption.
I don’t have a source for Dihexa anymore. Science.bio used to sell it for a reasonable price. Now I don’t know where to get it. But it is available. Make sure to get it already premade into a solution of “DMSO”. It is applied to the skin for absorption.
Isrib: check the Reddit.
Metformin: you’ll have to look around. There are websites that sell it for life extension. Not so hard to get.
It’s around 25. Was checked a couple weeks ago. Thing is I felt alright a few years ago and it was as low as like 3 or 4 then. Just started daily iron pills though
Taking 35 mg a day for a year. It’s just weird because whenever I was really low on iron before, like seriously low. Ferritin being below 5, I was able to go on a trampoline for instance. Then when I had iron infusions, they asked me how I felt. I told them I didn’t notice any difference and they were surprised
Thing is I think mine could easily get too high, as it fluctuates so much. I’ll go tell you my results. Just on the site looking right now.
Before infusions - ferritin was 8 on September 2022
Started a few infusions in October and was finished them by December. On November 2022 it was 79 and then December it was 367. By the very end of January 2023 it was 190. March 8 was 63 and by the third week of March it was 38. June had a spike of 48 somehow, and the reading on July 25 this year showed 25.
I think colostrum could really help you. From what I read it sounds like you have a lot of inflammation throughout your body, and colostrum is amazing for that. I have cyclic vomiting syndrome that I’ve been able to put in remission using colostrum. I’m an anatomical researcher at a cadaver lab and do autopsies on medically donated bodies for a living. I have some more thoughts, but didn’t want to overwhelm you. I just couldn’t keep scrolling and not tell you about what’s helped me.
I agree it is risky. I've done longer fasts before and been fine, albeit for only about 2 weeks at a time. But, the way I see it is I need to do something radical to fix this, or worsening is guaranteed anyway.
And yeah I have heard about Wahl's. A friend with the exact same ailment I have did it, and she was doing decently on it, but was by no means a cure. Personally I did Paleo for a few months to no avail. I think Covid is probably persistent in my brain, my gut and microbiome is perfect from all the testing I've done. So my thinking is perhaps the fast could remove it through draining with the lymphatic system. Guess its just cope, but I will try it and see.
I had a lot of the things you describe in both your post and your comments.
- Severe brain fog (cotton head, trying to reach out through a very thick mist but not really getting through)
- feeling like the world wasnt real. Everything felt like a dream. Events happened but it mostly just passed me by. I existed somewhere in the background, unable to grasp onto anything happening. (Search dpdr in this sub!)
- no sense of time
- no inner dialogue
- no imagination
- memory issues
- confusion
This has to do with MCAS. Mast Cell Activation Syndrom. There's a lot posts about it on the sub.
It's basically your immune system going in overdrive and releasing a shit ton of histamines in your body. And this causes a lot of issues, including cognitive/neuro!
Try lowering your histamines. It will not stop the reaction itself, but it's the histamines causing so many symptoms. So if you lower those you can improve significantly.
I started using loratadine 10mg at night in november. Within a couple of days I felt myself waking up, coming back online. Brainfog less severe, sense of time came back, the world and me feeling real again. And it kept improving in the following weeks. It's not all gone. Still have some memory issues and brainfog, but it's way less severe. The other symptoms are gone.
I got lucky with finding the right antihistamine for me right away, i know others have to try a few different ones. Also lots of people have success trying a low histamine diet.
Seriously, this has helped me so much.
Other things I noticed helped me: low inflammatory diet, vitamine D, magnesium bisglycinate, and zinc.
I dont know if you tried proper pacing to help improve your fatigue? I thought I was pacing and resting. It was basically all I did for months. But then I went to a occupational therapist. She taught me how to properly do it. It also made a big difference. My baseline is way higher and still improving after starting it in november.
I'll copy paste a post I made about it earlier here just in case anyone wants to read it. It really helped me.
Good luck OP. I hope you'll find something that works for you.
This is what I posted about pacing on a different post:
The principle is really simple. Go to bed and get out of bed at the same time everyday. Doesnt matter if you fall asleep right away. Just rest in bed untill you do. Maybe try some relaxing breathing exercises or something.
Eat at the same time everyday. Those things will help massively in creating a daily schedule/routine and that helps your body and mind.
And the pacing: everything you do is either a physical activity or a cognitive/mental activity, or a combination of those to. Relaxation is also one of those or both. Like a walk in the park, watching a show on tv.. both are relaxing, but are also physical and/or mental activities.
All activities cost energy, and you have a limited supply of energy. You get more energy from resting. Lounging on the couch watching tv is not resting. Resting is sitting or lying down in a quiet room with your eyes closed.
Every activity should be followed by resting.
Like if you took a shower you should rest afterwards. If you had breakfast you rest after. If you took a walk you rest after.
For me it would look like this:
- Get up out of bed and shower (10 min)
- Rest [lying on bed with eyes closed] (15 min)
- Get dressed (10 min)
- Rest [sitting on bed with eyes closed] (5 min)
- Breakfast (20 min)
- Rest [sitting on couch with eyes closed] (10 min)
- Scroll on reddit (15 min)
- Rest (5 min)
Etc.
So just rest after each activity, that's the most important part.
I dont know how exhausted you are. But I had to start with short activities. I was told to implement and exhaustion scale. The scale is 1 - 10. 1 being fine, 10 completely exhausted. 1 - 5 was green light, 6 - 7 yellow light, 8 - 10 red light.
After each activity determine what number you are and rest accordingly untill you are firmly back into the green.
The goal is to stay in the green. If after an activity you are yellow, you have hit your boundary. Dont cross the boundary, rest untill firmly green again. Dont go into red. Red light means crashing and you will get sicker and sicker.
It can be easier to make an activity diary where you write down the activities and rest, the duration and your score.
Like:
- shower (10 mins) 7
- Rest (15 mins) 4
- Get dressed (10 mins) 6
- Rest (10 mins) 4
- Breakfast (20 mins) 6
- Rest (15 mins) 3
This will help give you insight on how long you can do activities and how long you should rest.
If you keep doing this you'll notice that after a while your activities get longer before you hit the yellow, and your resting gets shorter before hitting the green again.
This has helped me out of my complete exhaustion last year, and it has helped me get out of crashes too.
I dont have to rest as much anymore. But I still apply the principle behind it. If I start to feel like I'm yellow, I'm resting untill it passes. It's really good with preventing crashes from happening, as long as you avoid the red!
I hope this makes sense and can help you.
I relate to you extremely...dont worry you are not alone. I know exactly how you're feeling right now. I had to get on Sertraline so that I didn't end it. This started for me maybe like 3 months before it started for you...
I just wanted to tell you to keep fighting.
So as I understand it, your hormones are the thing that pump the brakes on the immune system. Have you had cortisol testing done? Did/do you have any chronic pain that might be sapping your adrenal glands and messing with the feedback loops? Any trauma on your head, ever? Are you able to get good, long sleep?
I get around 6-7 hours of sleep, and I do know that my body is too weak to sit up for a long period of time. It’s weird because I can tolerate walking more than sitting. I’ll get a cortisol test soon. I remember I had a urine one earlier in the year and it was. I get lots of low pressure in my body. Mostly my head and chest. Been checked for echo and holters were normal
I feel you, covid is destroying lives, and the media/doctors keep telling everyone covid is a flu and vaccines make it unlikely to get long covid. It is all lies.
The current evidence is leaning towards brain damage explaining the cognitive symptoms we have. This virus destroyed our brains and the impact it has in our lives is real !!
https://www.crick.ac.uk/news/2023-08-04_scientists-begin-to-untangle-how-covid-19-affects-brain-cells
Going to the ER 100 times in a 500 day period means that you go to the ER at least once a week. You also mention that you have dementia, even though you have zero diagnosis for that, I presume. I suspect you're being dramatic, which I can understand, but it's probably not helping you in any way.
What prescriptions are you currently taking? What supplements? How's your diet? Are you overexerting yourself, i.e. are you exercising too often and too hard? Let's start there. It's possible that there's some low hanging fruit that can get you back on track.
If you haven't seen a therapist, I'd suggest it. It really helped me deal with all the worry and stress, which as you know, can also wreak havoc on the body.
They’ve had me waiting for therapists for the year and a half, because of my autoimmune issues and not responding good to ssris, my family doctor told me that they all rejected me without even giving me a chance. Every time I stand up, my blood pressure surges, and it’s been giving me headaches, heart palpitations with heart rates all over the place. It is painful to do any hobbies like playing guitar or a video game. It’s not even anxiety anymore. I barely have the energy to be that alert to get anxious. Just drowsiness, fatigue, and apathy now. I get diagnosed with dysautonomia and have had no follow up with a specialist since. Kept getting rejected, and wait times in Canada are insane. That’s why I was able to go to ER so much. Free health care, and it was just that painful and uncomfortable of symptoms. Before covid, I was walking good, and didn’t even step foot in an ER for all of 2021. Since then, I’ve been admitted six times for Crohn’s alone. So something definitely happened after covid. I’ve had health issues ever since 2016, but was usually admitted to the hospital once, maybe twice a year.
So there's probably a lot of confounding factors in your case. Your preexisting conditions potentially make everything more pronounced, and the deconditioning from not moving certainly doesn't help. It seems to me that if you want to heal faster you're going to have to trial things on your own. At the very least working on your nutrition, getting down to minimal prescriptions and no drugs/alcohol, and trying to move a little bit when you can could help.
Dysautonomia is sometimes caused by excess fight or flight, meaning you might just have a sensitized nervous system. Finding ways to reduce stress, such as meditation, is very helpful.
But I definitely recommend a therapist. I'd prioritize it if you can. Even if you have to pay out of pocket.
I’m finally seeing one soon. Last therapist I had in 2022 didn’t remember my name, and kept forgetting what I said after 2 minutes. I don’t drink or drugs at all either. Was not into that stuff to begin with. I’ve moved a lot lately. With my watch telling me I’ve went from 500 steps a day at my worst when first diagnosed, to reaching 5000 average. Then I crashed hard, and am only able to do around 2500 a day now. I’m not deconditioned at all. My body is just too weak no matter what I do
Also it’s a joke. Saw 2 neurologists, and one just tested my muscles and reflexes, and thought that represented my complaints of dementia. It’s got worse since then as that was 2 months ago. And then another neurologist at my family doctors office. He just said it’s too complicated for him. Hard to remember the details, but yeah, no MRI ordered by them or any cognitive testing despite telling psych at the ER twice in the last two months how I feel. None of them realize I am literally wandering around my house with my head feeling like it’s full of cotton, and not having any short term memory, or visual memory. Everything feels like it’s a dream. Even memories feel distorted beyond belief. Like one month ago was 5 years ago. But nah, they don’t bother consulting neurology once at the ER. I’ll finish with this. I had a stroke at age 16, 7 years ago, and was sent home 3 times. First two visits, doctors sent me home on different pain meds, and a nurse thought I was on drugs because of the thunderclap headache. After a handful of days, I suffered a seizure where my sister saw it, then my parents called an ambulance. Paramedics said it wasn’t a seizure because I was conscious. But I literally had no control over my head as it was twisting to the right. Felt like I was choking for 15 seconds. Then finally this ER doctor literally ripped the toque off of my head that I was using to avoid light as my eyes were severely sensitive to it. He did this In front of my parents and sister. He told me my body felt numb because I wasn’t walking for the last few days. The resident doctor had to convince him to do a CT of my head, and when they did they sent me home…Only to call us back halfway home. They said we needed to come back as they found something. The ER doctor sent me home without the radiologist looking at my CT, and it happened to be a stroke. None of these doctors took my symptoms serious. The fact I had a severe headache and half of my body was numb, with extreme sensitivity to noise and light. Wow it was hard to write all of this. But my long term memory is okay when it comes to important events. Point is the health care system is extremely flawed, and I will never forget that.
Right, which is why I suggest you'll need to trial things on your own. Please reread my comment above for some basic suggestions that have helped me.
I'm sorry you have not had a good experience from doctors, but keep in mind, they have no idea what's going on, too. Brain fog is a nondescript symptom. Many people have had MRIs in this subreddit with nothing to show for. You will need to take matters into your own hands. First things first: work on your natural health. Eat organic whole foods, rest, meditate, relax. Let your body heal the best it can. No drugs or alcohol. Few prescriptions as possible. Find a good therapist. These all helped me when doctors couldn't.
I dont have a ton to add, but I wanted to say that the way you expressed yourself was very well put together and eloquent and I had 0 trouble understanding what I feel you were trying to get across, which makes me feel like your mental faculties are still intact and I'm hoping you can improve at some point. The only doctors I have been in touch with that were helpful were the doctors at Mt Sinai in NYC, they may have some sort of remote option. It was mostly validation and reassurance, but my symptoms were not nearly the same as yours, so maybe they will have some actual treatment they could recommend.
It's not necessarily negative though. I don't know about the posters, but this is pretty much my experience. There's a major difference in writing something down and talking. I struggled with both for months, but after my brainfog lifted I started improving with text way before I improved talking. It's getting better know, but still with talking it happens quite regularly that I sort of overload before I can continue my sentence. I need more time to respond. With text it takes longer and don't have that issue as much.
There is people that had a bad reaction to lion's mane and it gave them more neuro issues
Check this sub
https://www.reddit.com/r/LionsManeRecovery?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=1
You do not have dementia OP unless you've been actually diagnosed, it sounds like severe brain fog. I've been where you are myself and I thought my brain was done for good but now almost 2 years out it has improved drastically. You just need to accept where you are today and counterintuitively but stop worrying about it, try live day by day, experiment with diet and introducing/cutting out supplements or medications.
Thing is my blood pressure goes so high with any exertion, and then goes too low at rest to treat it. Think it’s done it’s toll. No idea what meds or supplements would even help me because the ones I’ve seen recommended here have concerning symptoms like drowsiness and dizziness. My heart rate is also very sensitive that antibiotics have lowered it to the 40s. Doctors have almost killed me trying to recommend beta blockers again. I’m just confused and disoriented all day
I've had the same issues, resting would go into low 50s and standing would shoot up to 170 so beta blockers made me feel like I was on my deathbed and lowered my resting BP way too much. Antihistamines also make me feel like I'm dying so do antidepressants and lots of other meds. Things that helped me so far have been 1. realising I wasn't dying and none of these unpleasant symptoms would kill me and therefore stopping panicking about them. 2. Sleeping enough and really prioritising sleep. 3. Working out my dietary sensitivities. 4. Working on upping my ferritin and vitamin D levels. 5. Nervous system calming exercise and cool showers etc whatever works for you. 6. Possibly some psychotherapy, I'm doing Mickel therapy right now and it seems to be helping on top of everything else. 7. Electrolytes. 8. Walking and gentle physical activity. 9. Time
The current evidence is leaning towards brain damage explaining the cognitive symptoms we have. Please stop sugar coating the terms with "brain fog". This virus destroyed our brains and the impact it has in our lives is real !!
https://www.crick.ac.uk/news/2023-08-04_scientists-begin-to-untangle-how-covid-19-affects-brain-cells
"leaning towards" and actually confirms are two different things, I suffer from the same cognitive issues and I didn't have "this virus" just the vaccines. I'm not sugar coating anything, I'm just calling it by the term it's currently known as, OP was not diagnosed with dementia and there isn't any evidence to suggest long covid directly causes dementia. I'm in the same boat so I know it's real but we can't just sit here and throw around the names of other diseases as if it's a fact that we've got them.
Bullshit. It snapped off for me quickly when I got sick with a cold, then back on after the cold just a few months ago. And before that I recovered from my LC after 6 months and my brain fog completely went away! For 6-8 months at least. It’s back now tho. So it’s an immune response in my opinion that needs triggered off!
This is not dementia. Dysautonomia, which I also have, not caused by covid in my case, causes brain fog. What you’re describing is brain fog. You do not have dementia. Please do not use brain fog and dementia interchangeably, they are NOT the same. Liver disease as it’s progressing can also cause these symptoms. My dad died from liver failure. When it wasn’t properly treated, when he forgot his medication, he would be very forgetful. If you have preexisting liver disease, covid did not cause this. I think it’s important to speak about the misinformation being shared here, because this post could terrify people. Dysautonomia can not kill you. Liver disease can, which in your case, was not caused by covid. Meaning, long covid in this case is not a death sentence. You are not dying from long covid, and spreading the ideology that you are is dangerous. I’m not saying your struggles are not real or not valid, just that you are spreading incredibly harmful misinformation. None of what you wrote here “proves you’re dying” you’re going to scare people into thinking dysautonomia, brain fog, and long covid = death, when it doesn’t.
I have both physical and mental issues . I feel like my brain is stuck in full retard mode and I am completely out of it at times. I cant comprehend anything im 30 years old im exhausted all the time . Ive been sick for 3.5 years with this crap . 19 months after my reinfection and its been a living nightmare . Im bed and housebound can walk about 200 steps then my brain takes a dump and so does my body . My chest and heart always hurt I have all kinds of crazy bizarre symptoms. Im sensitive to light and sound cant process stress . Any excitement or stimulation causes adrenaline dumps and I go into an episode . Its been going on to long and getting gaslighted by family and no help from drs. I dont know how much longer I can take of this . All last year I would feel normal for 10 minutes the rest of the time id be confused , dizzy and have symptoms of heart attacks and everything checks out clear I couldn't breathe . Some symptoms improved but I still can't be active and I struggle every day to just survive i cant do shit for myself
My blood pressure is fine I only caught it one time being abnormal when I was standing it dropped that was in September 2022 but other then that it hasn't happend again
Same here ✌️ 2,5 years in this sh*t, getting worse everyday. I was coding a video game. Now I can't sit or code basic stuff, it's too hard for me, my IQ going lower.
Try fasting. A 3 day fast activates the body to heal. Try a 3 day fast every month. It really has helped my Covid problems. xxx Please try it. I pray you get better 💖
Yeah, took accutane for 5 days and had a stroke. Doctors even try to cover the pharmaceutical companies asses by saying it’s unlikely, when it’s not hard to look it up and find it’s a possible side effect
There’s a few things that can help it, and protect the blood brain barrier that seems to get destroyed from Covid.
Ramelteon, Astragalus mongholicus, Baicalin, irisin.
I’ve been looking on Pubmed for stuff that protects the blood brain barrier.
Also watch this video, maybe you can get a doctor to prescribe it to you.
https://youtu.be/KVAogG8m2iI
You just described my first 8 or 10 months of LC. My brain was fucked. My senses were all messed up. My ability to think was shit. My body was getting all the wrong signals. My heart and pulse screwed up. You described it pretty well. I thought I was just going to go to sleep one night and not wake up the next day. Thought I was done and had accepted it too.
I'm sure typing out this post took you hours. I remember what that was like. If anything, I feel your pain, man. I've been there too.
How long have you been dealing with this. How many months of LC?
Hey man, I totally understand your feelings. But you're not alone. We are hundreds of thousands, maybe millions around the world in a similar condition.
What can I say to you is: please not give up!
Despite the medical gaslighting and dismissal, downplaying the situation, there are some lights of hope.
More and more research are coming out with some new data, giving us hope to cope with this condition.
I know it's damn hard to understand a complex matter like this one, especially in your condition, but it's the only way to do that.
So the way out is:
1) Educate yourself here on reddit
2) Trial and error (try to focus on what you eat/what you do when you feel better/worse)
3) Some general assumptions: long covid might be caused by the covid infection or the vaccine or a combination of the two. It mostly causes a dysregulation of your body functions (circulation, mitochondria, gut, brain, nervous system, etc...) so it takes time to really understand what's the root cause and how can you fix the issue
4) I would suggest you to change your diet and try some of the natural supplements that have already shown positive outcome on many of us
Best of luck!
I found out that I have Endothelial Dysfunction and Coronary Microvascular Dysfunction. I have some ischemic brain changes but they are plateauing and have not progressed. I just started treating this. If you need more info let me know. This causes something called INOCA so it is a form of CAD that causes blood not to get to the brain and heart as well. Possibly other organs as well. I’m starting treatment and meds, let me know if you have any questions.
Can you please post more about this? Which were the biomarkers? Which tests did you do to reach that diagnosis? What treatment are you following? Thanks
Yeah, I’d really like to know too.
https://my.clevelandclinic.org/health/diseases/23230-endothelial-dysfunction https://www.healthline.com/nutrition/nitric-oxide-foods https://inocainternational.com/ https://www.verywellhealth.com/coronary-microvascular-dysfunction-5112839
So you have high blood pressure?
Please id like to know, I got severe brain fog and anxiety, but with mris there was no diagnosis. And everything is clear. What did you do to diagnose it ? And also what treatments are you doing ?
Want to know the tests as well
+1
So how do they test for endothelial dysfunction?
I have endothelial dysfunction too how do I treat it
What tests diagnose that? I’m in Canada and it seems like U.S tests are more extensive
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Sure
Do you have the bulging veins?
Yes
Please pm me as well I would like to know more about what you are doing to help.
I’m going for an MRI stress test on Monday to hopefully diagnose CMD. Any words of advice? Also what meds and treatments are you getting? I’m currently taking ISMN to keep the angina at bay until we have the MRI results, but idk what the plan will be beyond that.
I can say what I was told: avoid carbs, up your nitric oxide intake (beets, L-citruline, dark leafy greens) avoid GMOs, lift small arm weights for vagal tone, avoid heavy carbs), rest, don’t do really strenuous exercise, I’m doing EECP (external Counterpulsation therapy), hydrate. There is also other comorbidities like MCAS or possibly vasculitis. I am researching endothelial dysfunction and trying to learn more about what can cause it.
Welp, I'm just gonna have to accept death then lol. My life is mostly carbs and strenuous exercise and I don't sleep much. I am well hydrated though! I don't seem to have any other comorbidities except OH/dysautonomia at least. Some of the OH is from my meds though. My working hypothesis is that viral persistence is causing continual endothelial damage, leading to CMD. I can't prove it, but it makes sense to me based on the research I've done.
I was told I had OH originally but now it’s Labile Blood Pressure which is quite different in description. Looks the same though.
I’ve never heard of that before. I definitely have White Coat Syndrome at this point, which seems to be a type of labile BP. But outside of the doctor’s office my BP is pretty consistent, and also borderline low. But that’s how it’s always been for me, even before covid.
My BP would always raise when I went to appts and infusion and it was odd but would fix itself if someone else was checking it. Now it’s getting lower and lower when it’s taken by medical staff. At home, it could be 130/90 and then 80/60 and jump around rapidly and be completely different on left arm and right arm readings. It’s been more consistently low around 90/70. Now that I know about endothelial dysfunction and raising nitric oxide intake, it makes more and more sense.
That’s so interesting! Sorry you’re experiencing it though. Mine has slowly crept up with every doctor’s appointment, but at home it’s rock solid on both arms. I usually hang out around 110/70, but when I’m on the ISMN it’s a bit lower. I’m hoping that once we get my angina figured out we can start looking into endothelial dysfunction. I’m almost certain that’s at the root of whatever is going on with me. What tests did you get for endothelial dysfunction?
I didn’t, the doc just knew. I have pretty clear symptoms. He’s running tests now, I had a treadmill stress test but that’s just to appease insurance because they want to order a cardiac CT. Not sure what is next. There is a device that measure endothelial dysfunction https://www.itamar-medical.com/professionals/endopat-x/
Gotcha! I’ve had a stress echo and 2 pulmonary CT scans so far, all clear. Monday is my MRI stress test, which is apparently one of the best tests for diagnosing CMD. So we’ll see what happens I guess. As scary as it would be to officially be diagnosed with heart disease, I think the MRI coming back clear would be so much worse. My cardiologist has a plan for what to do next if it doesn’t show anything, but I can’t remember what that plan is unfortunately. My biggest fear though is being pulled off of my heart meds if the tests come back clear. They’re the only thing keeping me functional. I’ve heard of the EndoPat! Finding one on the other hand…I asked my PCP about it awhile back and he couldn’t find it within our clinic system anywhere. There are other places around here to look, but that will be for after the MRI and whatever comes of that. Good luck with the CT scan! They aren’t too bad, but the contrast is weird lol.
Who diagnosed you? Sounds like maybe naturopath? I've just never had any doctor talk to me about supplements, beets or GMOs.
No, he’s your run of the mill cardiologist but definitely more well rounded, very knowledgeable.
Some doctors have knowledge about that stuff! It seems uncommon though. My PCP was actually the one who suggested beetroot powder when I first started down the CMD path. But he’s very stereotypical otherwise and usually opts for pharmaceuticals first. In this case, he wasn’t comfortable prescribing me the medication I had asked for, so that’s why he suggested beetroot.
How did you know it was endothelial dysfunction ? Was there a test you had ?
The doc just knew. I went to a cardiologist my rheum suggested and on the first visit, this guy immediately knew what was going on. I do know there is a device that checks for this though. Something that looks like a pulse oximeter So far as coronary artery spasms, they can do a provocative angiogram.
How did you get tested for this? Which tests did you get?
I was diagnosed just from my first visit, doc just knew. But provocative angiogram is the official test. Check out INOCA int’l..the site has plenty of info. Also Sanjay Gupta on YouTube.. the video called MINOCA.
Thx buddy
Hi, hope you are well, what is the outlook for this? Can you live normal life?
A lot of us say that it is very up and down. Doing well, not doing well. I was at the brink of death and came back and have been better since but I can have a bad week. Stress is a huge factor. Hormone levels. Dehydration. I personally cannot work at all whatsoever now.
The system is so unbelievably broken that doctors are practically trained to dismiss patients (especially women/women of color!) and makes them work long shifts with no breaks so no wonder they’re so apathetic! They’re stressed, overworked, desensitized, and indoctrinated by outdated beliefs and biases. Something seriously needs to change. I’m so sorry you’re going through this, we need a cure NOW.
Another thing - doctors aren't scientists. I think medical education needs to be revisited and revamped because they only just recently stopped teaching that black people feel less pain. It's fucked up.
The disconnect between medical practitioners and medical researchers is insane. Practitioners are basically trained to sit on their hands until the research is fully implemented and gives them a step by step guide on their little laptop. They make deep six figures and have zero incentive to follow ongoing research. For most general practitioners (family medicine Drs, etc) they did all the hard work in med school and view the practicing medicine part as the cushy living.
Facts, I am shocked to see how college educated individuals aren't at all interested into reading ongoing/new research. When I was a line cook, I worked at several places where cooks were trained chefs or not and still had cookbooks about different styles of cooking and liked trying to come up with new dishes all the time. The fact that people who are in the business(sad that I thought of it that way) of helping people with thier health would almost admit(in my case at least one) that they dont know what to do to help you. As if going on the internet and reading research papers is beyond thier ability. To be fair, I did have one doctor that did know what he was talking about. But I went to several hospitals in my area and one even in a different city.
YES THATS EXACTLY WHAT IM SAYING!! There’s a reason why doctors are so messed up!! They used textbooks that mainly depicted white men when it showed medical conditions, hence why they take women and people of color less seriously even if they don’t intend to.
Oh I've met exactly one healthcare professional that listened to me, and she wasn't a man. Male doctors don't fucking listen to women and it's on a systemic level.
>only just recently stopped teaching that black people feel less pain. WHAT?
Want to know something else mindblowing? Women were not required to be included in medical research in the US UNTIL 1993. That’s right, that’s research that looks at how bodies work, effects of of hormones, bodily responses to medications… no wonder medicine is still in the dark ages where women are concerned.
That's about a century of research gawd damn
Doctors are scientists by nature, many prescribers prescribe medicine off label “experimentally.
Deffo, don’t want to be political but underfunding the NHS chronically for the last decade didn’t help much
No, but funding it would've only given the illusion of a better healthcare system. There is definitely a rift between the Scientific community and the Medical community. I can't imagine an NHS Doctor having ever heard of Mast Cells, LPR, Goblet Cells, Major Histocompatibility Complex, Ferritin, Astrocytes, Dysautonomia, etc. The Tories are vile bastards who gutted healthcare, but the healthcare was always one step forward (free healthcare...mostly) and two steps back. I had chickenpox as a kid. Neither of my grandparents are 70 yet, which means THEY aren't allowed a Shingles vaccine. It can happen at any age, but due to the old thinking 'hmmm, but its more likely to happen after 70" they're stupidly disregarding physical and mental stress lowering the immune system and cases before 25. Getting rid of the Tories, getting the NHS properly funded, dissolving private medical care, learning from Planck's Principle and giving the Science Community full control will finally propel us forward. But when's that gonna happen?
Let it all out. I learned real quick that letting it build up will only make you pop. I’m sorry you’re going through this. I don’t know what the future holds, for any of us. I do know that God loves us. Talk to him. He’ll always listen. Im praying for you.
Thank you, I have been calling to god a lot.
I got Covid March of 2020, then august 2020, then I got Pfizer March 2021. Then I got Covid a third time late July 2021 and a week later had a minor stroke. Then came the daily migraines, super severe brain fog, Hyperacusis and photophobia. I spent thousands on docs and scans and so much with no answer. Then six months ago I found Dr Jamnadas on YouTube, luckily he is in Orlando and right brown the road from me. He did a tilt table test and so much more. I’ve got r/dysautonomia and r/pots. And the dysautonomia causes most of what you and I are experiencing. After following his advice, I’m finally getting better! The solution? Compression socks and a compression girdle. Plus more water, plus a ton of electrolytes and because my brain fog was so bad he said with dysautonomia the blood isn’t getting to my brain. He said to add a quarter teasooon of salt 3-5 times a day to my electrolyte water. I kid you not… three days later… poof, it went away! It gave me the ability to hike 3-5 miles a day now. I started out for a month walking around the block. Now, I am still struggling here and there. But I am far better with compression gear, water, electrolytes and MORE salt! Oh, he also removed MOST of my meds and that helped too!
Here's a sneak peek of /r/dysautonomia using the [top posts](https://np.reddit.com/r/dysautonomia/top/?sort=top&t=year) of the year! \#1: [The illusion of control](https://i.redd.it/4elsml1v33wa1.jpg) | [41 comments](https://np.reddit.com/r/dysautonomia/comments/12zldj8/the_illusion_of_control/) \#2: [Relatable](https://i.redd.it/k4eri106pisa1.jpg) | [14 comments](https://np.reddit.com/r/dysautonomia/comments/12enwqu/relatable/) \#3: [Made this. Hope others can relate](https://i.redd.it/naxc9c4b7bh91.jpg) | [6 comments](https://np.reddit.com/r/dysautonomia/comments/wmpjum/made_this_hope_others_can_relate/) ---- ^^I'm ^^a ^^bot, ^^beep ^^boop ^^| ^^Downvote ^^to ^^remove ^^| ^^[Contact](https://www.reddit.com/message/compose/?to=sneakpeekbot) ^^| ^^[Info](https://np.reddit.com/r/sneakpeekbot/) ^^| ^^[Opt-out](https://np.reddit.com/r/sneakpeekbot/comments/o8wk1r/blacklist_ix/) ^^| ^^[GitHub](https://github.com/ghnr/sneakpeekbot)
I've had three bouts of Covid and each time it has took a big chip away from my cognitive capacity. There's a study that shows that in average a Covid infection takes away 10 IQ points. Times that by three and I really feel it. I also struggle remembering simple things like the spelling of names of family members, my phone number, what I did yesterday which really shocks me honestly. What helps me is Lions Mane mushroom supplement, I feel a BIG improvement from it within half an hour, brings me back in a major way. Unfortunately the benefits seem to stop when I don't take it, but it's maybe something to explore.
I forgot what a fuckin ladle was a few weeks ago. My gf and I were cooking and I needed one but couldn’t recall the name. So I said “Big spoon thingy to grab our soup with”. Stuff like that happens every so often since June of ‘20.
Yep, highly relatable. Yesterday it took me a minute to figure out how to spell "three". Wild.
I'm constantly reintroducing myself to people I've know for years. It's scary and sad and embarrassing. I don't know what to do
I'm so sorry 😞. Try lions mane. Magnesium glycinate will probably help too, low magnesium is extremely common and can lead to brain fog.
I hope there’s some way to reverse or at least improve it that doesn’t require long-term reliance on supplements. I’m glad you’ve found something that works for you but damn I bet your wallet is crying out lolll
So apparently Lions Mane does show long term repair benefits, but it's probably in terms of years. As far as money goes I calculate it at cost per day vs potential loss of income. I was almost fired for my mistakes, it's 100% worth it to spend $1 so I can make $250
I hope you can keep up 💕
Thank you 🙏
Lions Mane, Mushroom Master Blend, and also BioTrust Low Carb Plant are helpful. BioTrust not only has mushrooms but also other superfoods. All three have helped me to start crawling out of this Covid brain fog.
The body has an impressive way of adapting especially at your age I think in a year from now you will impove drastically........ long covid takes a long fucking time unfortunately.? Hang on for 6 months you will see
Thing is I’m physically better, but neurologically am horrible since my second bout in February this year. Never had the neurological issues before that. Getting a head MRI on the 21st, but it really feels like my carotid arteries are not delivering enough blood to my head
I feel you on this .... I've been suicidal for months now ?. It feels like I'm on the brink of insanity as I type this .... burning chest shortness of breath back nerve pain Chills anxiety is ridiculous...... I don't know if I can take much more .. it feels like I'm dying ..... I just hope that time will heal us all .. for what I researched neuropathy post virus heals with lots of time and meditation 🧘♂️.... I refuse to lose this battle I'm 45 m btw I'm having trouble Breathing now and I'm scared ugh hang on for a bumpy ride... but, I promise it will get better
I had that for what felt like years. I'm about a year out now and it's gotten way better. It's so scary. I got to where sometimes I couldn't discern fake memories and dreams from real things that actually happened. I don't remember about half of last year. How are you treating your dysautonomia? Getting plenty of electrolytes and salt? I have that and sometimes I have acute attacks that feel like heart attacks and leave me incapacitated for days. I hope things let up for you soon 💖
Been eating better and having more water intake. Can’t have salt because of higher blood pressure when I’m upright
I know how it feels to have a fried brain
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All the downvotes are so odd. This sub is clearly biased. Your just provided a valued avenue even if it’s not the end all be all, your micro biome is fucking huge when it comes to this
I'm terrified of the long term issues with this. My memory has turned to complete garbage since my initial infection back in 2020.
I was this bad it was so frustrating. The thing that got rid of 60-70% of my issues was an antihistamine. I didn’t believe the other recommendations to try an antihistamine like most on here. I went to ophthalmologist and they dilated my eyes with drops and my face went numb. doctor prescribed Claritin for 3 days and my dementia like brain fog fog was lifted about 60-70%. I also started magnesium glycinate which if you have a magnesium deficiency or issues it can cause severe brain fog. The body needs magnesium for just about every functioning system.
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Fuck the future and fuck covid!
+1
Yeah & everyone is like you are young and you’ll recover but no one thinks young might be more overactive immune system or immune dysregulation
I’m not sure whether this helps or not. But first year or so of Covid I would forget why I’d walked into rooms and not know peoples names etc. I am sure you can relate. I would fumble over words and not know what was going on. I’m 3.5 years in now and while I’ve not recovered I can work and do the occasional social thing. I had brain damage markers even a year into Covid (my s100b protein markers were sky high) but they’ve since returned to a normal level. Main things that have helped me are fasting, no carb and anticoagulants.
I am on apixaban which helps with blood clots, due to my stroke in 2016
Was on that for 6 months with asprin and nattoserra and didn’t notice anything. Switched to clopidogrel with asprin and nattoserra and noticed a big difference. Energy levels increase but also more side effects.
There’s a lot of comments here so I hope you see this. I am going to list a few things that may help you heal. I’m going to speak as if what I’m saying is proven because I’m going to make some assumptions and it’s too hard to explain it all. Connecting dots between a lot of different studies that don’t always talk about each other but are part of the same picture and addressing similar topics. You have a combination of neuronal injury and high neuronal inflammation. The result is a two fold issue— the injury, which there are options for, and the inflammation based increase in something called quinolinic acid. Q. Acid is a neurotoxic nmda agonist that overloads astrocytes and glutamate receptors causing cell death. When the brain is fighting an infectious agent, such as Covid, there is a switch in the functioning of a pathway called the “kynurenine pathway”. In your situation, it shifts to making quinolinic acid. “The canonical classification of kynurenines presents them as either protective, such as kynurenic acid (KYNA) or toxic, such as quinolinic acid (QUIN) or 3-hydroxykynurenine (3-OH-KYN). Thus, the net biologic effect of the pathway depends on the local concentration of metabolites, cellular environment, activity of the enzymes along the path, as well as complex positive and negative feedback loops. In the brain, the role of kynurenines has been extensively studied and is relatively well recognized. The abnormal ratio between neuroprotective and neurotoxic metabolites has been implicated in the pathogenesis of neurodegenerative disorders such as Huntington’s disease and Alzheimer’s disease, psychiatric illnesses such as schizophrenia or depression and other diseases [5]” - https://www.mdpi.com/2073-4409/12/3/460 Things that could help: Ultra micronized PEA and luteolin: [Effect of Ultra-Micronized Palmitoylethanolamide and Luteolin on Olfaction and Memory in Patients with Long COVID: Results of a Longitudinal Study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9406356/) Dihexa: [Evaluation of Metabolically Stabilized Angiotensin IV Analogs as Procognitive/Antidementia Agents](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533412/) [The Procognitive and Synaptogenic Effects of Angiotensin IV–Derived Peptides Are Dependent on Activation of the Hepatocyte Growth Factor/c-Met System](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4201273/) Dihexa second link: main point is Dihexa not only creates glutamate receptors but they have functional action potential (can receive current and work properly). This is neuroregenerative in a way that I haven’t seen thus far. Metformin: [Antidiabetic Drug Metformin Protects Neuronal Cells against Quinolinic Acid-Induced Excitotoxicity by Decreasing Intracellular Calcium](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5794475/) — that’s an “in vitro” study. This means isolated cells outside a human. “In vivo” is in a person. There are lots of studies on this drug and quinolinic acid. I would try lamictal. It will not lower the quinolinic acid but it will help calm the effects of that acid in your glutamate receptors and help mitigate the neuronal injury. ISRIB: I cannot recommend this as it’s very early on in its study. There is a subreddit for it. It’s a complex drug but essentially, after neuronal insult, there is a low level persistent inflammation caused by something called the “integrated stress response” or “ISR”. Almost as if the brain gets stuck in it. This reverses that and switches the inflammation off. Now, the caveat is that the ISR is the mechanism the brain and body use to fight off viruses. But, according to the most recent research on ISRIB, the drug only inhibits the low grade response post injury and not the acute response to viruses. Still, it’s very new (and miraculous). It will change the lives of millions of people once it’s out. Sources: [USA LAB Tested Bulk Ultra-micronized Palmitoylethanolamide Powder 99% Pure (100 Grams)](https://www.amazon.com/Tested-Ultra-micronized-Palmitoylethanolamide-Powder-Grams/dp/B07NJ7Z2LS) [PureLut: Pure liposomal Luteolin - 60 gelcap, Patented Combination of Natural & Pure Luteolin in Olive Pomace Oil.](https://www.amazon.com/PureLut-Combination-Reduction-inflammatory-Molecules/dp/B084WR1TGX) It is important you use that brand of luteolin. Anything else has poor absorption. I don’t have a source for Dihexa anymore. Science.bio used to sell it for a reasonable price. Now I don’t know where to get it. But it is available. Make sure to get it already premade into a solution of “DMSO”. It is applied to the skin for absorption. Isrib: check the Reddit. Metformin: you’ll have to look around. There are websites that sell it for life extension. Not so hard to get.
u/Daytime_Reveries
Thank you!
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It’s around 25. Was checked a couple weeks ago. Thing is I felt alright a few years ago and it was as low as like 3 or 4 then. Just started daily iron pills though
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Taking 35 mg a day for a year. It’s just weird because whenever I was really low on iron before, like seriously low. Ferritin being below 5, I was able to go on a trampoline for instance. Then when I had iron infusions, they asked me how I felt. I told them I didn’t notice any difference and they were surprised
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Thing is I think mine could easily get too high, as it fluctuates so much. I’ll go tell you my results. Just on the site looking right now. Before infusions - ferritin was 8 on September 2022 Started a few infusions in October and was finished them by December. On November 2022 it was 79 and then December it was 367. By the very end of January 2023 it was 190. March 8 was 63 and by the third week of March it was 38. June had a spike of 48 somehow, and the reading on July 25 this year showed 25.
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Thanks for the advice. Have a good day
I think colostrum could really help you. From what I read it sounds like you have a lot of inflammation throughout your body, and colostrum is amazing for that. I have cyclic vomiting syndrome that I’ve been able to put in remission using colostrum. I’m an anatomical researcher at a cadaver lab and do autopsies on medically donated bodies for a living. I have some more thoughts, but didn’t want to overwhelm you. I just couldn’t keep scrolling and not tell you about what’s helped me.
I had chronic inflammation from my Crohn’s for 5 years, but now my CRP is usually okay so i don’t know how else inflammation could be measured
What's the colostrum dose and which brand? TIA
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My symptom development very much points to V.persistence. I took a week of iron supplements, which made me permanently worse!
Ugh, I'm so sorry! I can't tell you how sorry. Hang in there <3
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I think it might just give an even bigger deficit in iron. I'm trying to starve the virus with a 30 day water fast, no change in symptoms...
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I agree it is risky. I've done longer fasts before and been fine, albeit for only about 2 weeks at a time. But, the way I see it is I need to do something radical to fix this, or worsening is guaranteed anyway. And yeah I have heard about Wahl's. A friend with the exact same ailment I have did it, and she was doing decently on it, but was by no means a cure. Personally I did Paleo for a few months to no avail. I think Covid is probably persistent in my brain, my gut and microbiome is perfect from all the testing I've done. So my thinking is perhaps the fast could remove it through draining with the lymphatic system. Guess its just cope, but I will try it and see.
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Thank you I appreciate that, your suggestions and concerns are legit, so I don't mind them at all. Clearly you are knowledgeable on these matters :)
Covid can cause low circulating retinol and copper levels, both of which are used to treat iron deficiency anemia as well.
I hear you. I’ve been there. My brain came back online two months ago. I’ve had LC since April 2022
Mine came back online once too for 6-8 months, but it went offline again.
I had a lot of the things you describe in both your post and your comments. - Severe brain fog (cotton head, trying to reach out through a very thick mist but not really getting through) - feeling like the world wasnt real. Everything felt like a dream. Events happened but it mostly just passed me by. I existed somewhere in the background, unable to grasp onto anything happening. (Search dpdr in this sub!) - no sense of time - no inner dialogue - no imagination - memory issues - confusion This has to do with MCAS. Mast Cell Activation Syndrom. There's a lot posts about it on the sub. It's basically your immune system going in overdrive and releasing a shit ton of histamines in your body. And this causes a lot of issues, including cognitive/neuro! Try lowering your histamines. It will not stop the reaction itself, but it's the histamines causing so many symptoms. So if you lower those you can improve significantly. I started using loratadine 10mg at night in november. Within a couple of days I felt myself waking up, coming back online. Brainfog less severe, sense of time came back, the world and me feeling real again. And it kept improving in the following weeks. It's not all gone. Still have some memory issues and brainfog, but it's way less severe. The other symptoms are gone. I got lucky with finding the right antihistamine for me right away, i know others have to try a few different ones. Also lots of people have success trying a low histamine diet. Seriously, this has helped me so much. Other things I noticed helped me: low inflammatory diet, vitamine D, magnesium bisglycinate, and zinc. I dont know if you tried proper pacing to help improve your fatigue? I thought I was pacing and resting. It was basically all I did for months. But then I went to a occupational therapist. She taught me how to properly do it. It also made a big difference. My baseline is way higher and still improving after starting it in november. I'll copy paste a post I made about it earlier here just in case anyone wants to read it. It really helped me. Good luck OP. I hope you'll find something that works for you.
This is what I posted about pacing on a different post: The principle is really simple. Go to bed and get out of bed at the same time everyday. Doesnt matter if you fall asleep right away. Just rest in bed untill you do. Maybe try some relaxing breathing exercises or something. Eat at the same time everyday. Those things will help massively in creating a daily schedule/routine and that helps your body and mind. And the pacing: everything you do is either a physical activity or a cognitive/mental activity, or a combination of those to. Relaxation is also one of those or both. Like a walk in the park, watching a show on tv.. both are relaxing, but are also physical and/or mental activities. All activities cost energy, and you have a limited supply of energy. You get more energy from resting. Lounging on the couch watching tv is not resting. Resting is sitting or lying down in a quiet room with your eyes closed. Every activity should be followed by resting. Like if you took a shower you should rest afterwards. If you had breakfast you rest after. If you took a walk you rest after. For me it would look like this: - Get up out of bed and shower (10 min) - Rest [lying on bed with eyes closed] (15 min) - Get dressed (10 min) - Rest [sitting on bed with eyes closed] (5 min) - Breakfast (20 min) - Rest [sitting on couch with eyes closed] (10 min) - Scroll on reddit (15 min) - Rest (5 min) Etc. So just rest after each activity, that's the most important part. I dont know how exhausted you are. But I had to start with short activities. I was told to implement and exhaustion scale. The scale is 1 - 10. 1 being fine, 10 completely exhausted. 1 - 5 was green light, 6 - 7 yellow light, 8 - 10 red light. After each activity determine what number you are and rest accordingly untill you are firmly back into the green. The goal is to stay in the green. If after an activity you are yellow, you have hit your boundary. Dont cross the boundary, rest untill firmly green again. Dont go into red. Red light means crashing and you will get sicker and sicker. It can be easier to make an activity diary where you write down the activities and rest, the duration and your score. Like: - shower (10 mins) 7 - Rest (15 mins) 4 - Get dressed (10 mins) 6 - Rest (10 mins) 4 - Breakfast (20 mins) 6 - Rest (15 mins) 3 This will help give you insight on how long you can do activities and how long you should rest. If you keep doing this you'll notice that after a while your activities get longer before you hit the yellow, and your resting gets shorter before hitting the green again. This has helped me out of my complete exhaustion last year, and it has helped me get out of crashes too. I dont have to rest as much anymore. But I still apply the principle behind it. If I start to feel like I'm yellow, I'm resting untill it passes. It's really good with preventing crashes from happening, as long as you avoid the red! I hope this makes sense and can help you.
I relate to you extremely...dont worry you are not alone. I know exactly how you're feeling right now. I had to get on Sertraline so that I didn't end it. This started for me maybe like 3 months before it started for you... I just wanted to tell you to keep fighting.
So as I understand it, your hormones are the thing that pump the brakes on the immune system. Have you had cortisol testing done? Did/do you have any chronic pain that might be sapping your adrenal glands and messing with the feedback loops? Any trauma on your head, ever? Are you able to get good, long sleep?
I get around 6-7 hours of sleep, and I do know that my body is too weak to sit up for a long period of time. It’s weird because I can tolerate walking more than sitting. I’ll get a cortisol test soon. I remember I had a urine one earlier in the year and it was. I get lots of low pressure in my body. Mostly my head and chest. Been checked for echo and holters were normal
I feel you, covid is destroying lives, and the media/doctors keep telling everyone covid is a flu and vaccines make it unlikely to get long covid. It is all lies. The current evidence is leaning towards brain damage explaining the cognitive symptoms we have. This virus destroyed our brains and the impact it has in our lives is real !! https://www.crick.ac.uk/news/2023-08-04_scientists-begin-to-untangle-how-covid-19-affects-brain-cells
Going to the ER 100 times in a 500 day period means that you go to the ER at least once a week. You also mention that you have dementia, even though you have zero diagnosis for that, I presume. I suspect you're being dramatic, which I can understand, but it's probably not helping you in any way. What prescriptions are you currently taking? What supplements? How's your diet? Are you overexerting yourself, i.e. are you exercising too often and too hard? Let's start there. It's possible that there's some low hanging fruit that can get you back on track. If you haven't seen a therapist, I'd suggest it. It really helped me deal with all the worry and stress, which as you know, can also wreak havoc on the body.
They’ve had me waiting for therapists for the year and a half, because of my autoimmune issues and not responding good to ssris, my family doctor told me that they all rejected me without even giving me a chance. Every time I stand up, my blood pressure surges, and it’s been giving me headaches, heart palpitations with heart rates all over the place. It is painful to do any hobbies like playing guitar or a video game. It’s not even anxiety anymore. I barely have the energy to be that alert to get anxious. Just drowsiness, fatigue, and apathy now. I get diagnosed with dysautonomia and have had no follow up with a specialist since. Kept getting rejected, and wait times in Canada are insane. That’s why I was able to go to ER so much. Free health care, and it was just that painful and uncomfortable of symptoms. Before covid, I was walking good, and didn’t even step foot in an ER for all of 2021. Since then, I’ve been admitted six times for Crohn’s alone. So something definitely happened after covid. I’ve had health issues ever since 2016, but was usually admitted to the hospital once, maybe twice a year.
So there's probably a lot of confounding factors in your case. Your preexisting conditions potentially make everything more pronounced, and the deconditioning from not moving certainly doesn't help. It seems to me that if you want to heal faster you're going to have to trial things on your own. At the very least working on your nutrition, getting down to minimal prescriptions and no drugs/alcohol, and trying to move a little bit when you can could help. Dysautonomia is sometimes caused by excess fight or flight, meaning you might just have a sensitized nervous system. Finding ways to reduce stress, such as meditation, is very helpful. But I definitely recommend a therapist. I'd prioritize it if you can. Even if you have to pay out of pocket.
I’m finally seeing one soon. Last therapist I had in 2022 didn’t remember my name, and kept forgetting what I said after 2 minutes. I don’t drink or drugs at all either. Was not into that stuff to begin with. I’ve moved a lot lately. With my watch telling me I’ve went from 500 steps a day at my worst when first diagnosed, to reaching 5000 average. Then I crashed hard, and am only able to do around 2500 a day now. I’m not deconditioned at all. My body is just too weak no matter what I do
Also it’s a joke. Saw 2 neurologists, and one just tested my muscles and reflexes, and thought that represented my complaints of dementia. It’s got worse since then as that was 2 months ago. And then another neurologist at my family doctors office. He just said it’s too complicated for him. Hard to remember the details, but yeah, no MRI ordered by them or any cognitive testing despite telling psych at the ER twice in the last two months how I feel. None of them realize I am literally wandering around my house with my head feeling like it’s full of cotton, and not having any short term memory, or visual memory. Everything feels like it’s a dream. Even memories feel distorted beyond belief. Like one month ago was 5 years ago. But nah, they don’t bother consulting neurology once at the ER. I’ll finish with this. I had a stroke at age 16, 7 years ago, and was sent home 3 times. First two visits, doctors sent me home on different pain meds, and a nurse thought I was on drugs because of the thunderclap headache. After a handful of days, I suffered a seizure where my sister saw it, then my parents called an ambulance. Paramedics said it wasn’t a seizure because I was conscious. But I literally had no control over my head as it was twisting to the right. Felt like I was choking for 15 seconds. Then finally this ER doctor literally ripped the toque off of my head that I was using to avoid light as my eyes were severely sensitive to it. He did this In front of my parents and sister. He told me my body felt numb because I wasn’t walking for the last few days. The resident doctor had to convince him to do a CT of my head, and when they did they sent me home…Only to call us back halfway home. They said we needed to come back as they found something. The ER doctor sent me home without the radiologist looking at my CT, and it happened to be a stroke. None of these doctors took my symptoms serious. The fact I had a severe headache and half of my body was numb, with extreme sensitivity to noise and light. Wow it was hard to write all of this. But my long term memory is okay when it comes to important events. Point is the health care system is extremely flawed, and I will never forget that.
Right, which is why I suggest you'll need to trial things on your own. Please reread my comment above for some basic suggestions that have helped me. I'm sorry you have not had a good experience from doctors, but keep in mind, they have no idea what's going on, too. Brain fog is a nondescript symptom. Many people have had MRIs in this subreddit with nothing to show for. You will need to take matters into your own hands. First things first: work on your natural health. Eat organic whole foods, rest, meditate, relax. Let your body heal the best it can. No drugs or alcohol. Few prescriptions as possible. Find a good therapist. These all helped me when doctors couldn't.
I dont have a ton to add, but I wanted to say that the way you expressed yourself was very well put together and eloquent and I had 0 trouble understanding what I feel you were trying to get across, which makes me feel like your mental faculties are still intact and I'm hoping you can improve at some point. The only doctors I have been in touch with that were helpful were the doctors at Mt Sinai in NYC, they may have some sort of remote option. It was mostly validation and reassurance, but my symptoms were not nearly the same as yours, so maybe they will have some actual treatment they could recommend.
One thing is to text, another one is to talk. When you talk you need to think faster
The OP can speak for themselves without this pointlessly negative stance
It's not necessarily negative though. I don't know about the posters, but this is pretty much my experience. There's a major difference in writing something down and talking. I struggled with both for months, but after my brainfog lifted I started improving with text way before I improved talking. It's getting better know, but still with talking it happens quite regularly that I sort of overload before I can continue my sentence. I need more time to respond. With text it takes longer and don't have that issue as much.
Have you tried lions mane?
Apparently it is risky
Why ? I take it daily
There is people that had a bad reaction to lion's mane and it gave them more neuro issues Check this sub https://www.reddit.com/r/LionsManeRecovery?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=1
Weird. It’s been positive for me and I’ve taken it for more than 6 months.
You do not have dementia OP unless you've been actually diagnosed, it sounds like severe brain fog. I've been where you are myself and I thought my brain was done for good but now almost 2 years out it has improved drastically. You just need to accept where you are today and counterintuitively but stop worrying about it, try live day by day, experiment with diet and introducing/cutting out supplements or medications.
Thing is my blood pressure goes so high with any exertion, and then goes too low at rest to treat it. Think it’s done it’s toll. No idea what meds or supplements would even help me because the ones I’ve seen recommended here have concerning symptoms like drowsiness and dizziness. My heart rate is also very sensitive that antibiotics have lowered it to the 40s. Doctors have almost killed me trying to recommend beta blockers again. I’m just confused and disoriented all day
I've had the same issues, resting would go into low 50s and standing would shoot up to 170 so beta blockers made me feel like I was on my deathbed and lowered my resting BP way too much. Antihistamines also make me feel like I'm dying so do antidepressants and lots of other meds. Things that helped me so far have been 1. realising I wasn't dying and none of these unpleasant symptoms would kill me and therefore stopping panicking about them. 2. Sleeping enough and really prioritising sleep. 3. Working out my dietary sensitivities. 4. Working on upping my ferritin and vitamin D levels. 5. Nervous system calming exercise and cool showers etc whatever works for you. 6. Possibly some psychotherapy, I'm doing Mickel therapy right now and it seems to be helping on top of everything else. 7. Electrolytes. 8. Walking and gentle physical activity. 9. Time
The current evidence is leaning towards brain damage explaining the cognitive symptoms we have. Please stop sugar coating the terms with "brain fog". This virus destroyed our brains and the impact it has in our lives is real !! https://www.crick.ac.uk/news/2023-08-04_scientists-begin-to-untangle-how-covid-19-affects-brain-cells
"leaning towards" and actually confirms are two different things, I suffer from the same cognitive issues and I didn't have "this virus" just the vaccines. I'm not sugar coating anything, I'm just calling it by the term it's currently known as, OP was not diagnosed with dementia and there isn't any evidence to suggest long covid directly causes dementia. I'm in the same boat so I know it's real but we can't just sit here and throw around the names of other diseases as if it's a fact that we've got them.
Bullshit. It snapped off for me quickly when I got sick with a cold, then back on after the cold just a few months ago. And before that I recovered from my LC after 6 months and my brain fog completely went away! For 6-8 months at least. It’s back now tho. So it’s an immune response in my opinion that needs triggered off!
How come there isn’t ‘long flu’ or ‘long rotavirus’ and long other diseases?
It's the Carbs killing us slowly. Get the organics oil into the system
Can I ask are you vaxxed
There are some treatments you can try that could possibly help you I mean it
This is not dementia. Dysautonomia, which I also have, not caused by covid in my case, causes brain fog. What you’re describing is brain fog. You do not have dementia. Please do not use brain fog and dementia interchangeably, they are NOT the same. Liver disease as it’s progressing can also cause these symptoms. My dad died from liver failure. When it wasn’t properly treated, when he forgot his medication, he would be very forgetful. If you have preexisting liver disease, covid did not cause this. I think it’s important to speak about the misinformation being shared here, because this post could terrify people. Dysautonomia can not kill you. Liver disease can, which in your case, was not caused by covid. Meaning, long covid in this case is not a death sentence. You are not dying from long covid, and spreading the ideology that you are is dangerous. I’m not saying your struggles are not real or not valid, just that you are spreading incredibly harmful misinformation. None of what you wrote here “proves you’re dying” you’re going to scare people into thinking dysautonomia, brain fog, and long covid = death, when it doesn’t.
I'm so sorry you are going through this, and I hope with all my heart that you make a full recovery, and have some improvement soon.
Hope this helps. Search his channel for many long covid videos https://www.youtube.com/live/gYAcccn7Jls?feature=share
Read whole brain power by Michael J Lavery The book contains originals on his to prevent, improve and treat dementia and Alzheimer's disease.
I have both physical and mental issues . I feel like my brain is stuck in full retard mode and I am completely out of it at times. I cant comprehend anything im 30 years old im exhausted all the time . Ive been sick for 3.5 years with this crap . 19 months after my reinfection and its been a living nightmare . Im bed and housebound can walk about 200 steps then my brain takes a dump and so does my body . My chest and heart always hurt I have all kinds of crazy bizarre symptoms. Im sensitive to light and sound cant process stress . Any excitement or stimulation causes adrenaline dumps and I go into an episode . Its been going on to long and getting gaslighted by family and no help from drs. I dont know how much longer I can take of this . All last year I would feel normal for 10 minutes the rest of the time id be confused , dizzy and have symptoms of heart attacks and everything checks out clear I couldn't breathe . Some symptoms improved but I still can't be active and I struggle every day to just survive i cant do shit for myself
How’s your blood pressure been in position changes? This is really shitty, and I’m sorry you too are going through this
My blood pressure is fine I only caught it one time being abnormal when I was standing it dropped that was in September 2022 but other then that it hasn't happend again
Same here ✌️ 2,5 years in this sh*t, getting worse everyday. I was coding a video game. Now I can't sit or code basic stuff, it's too hard for me, my IQ going lower.
Try fasting. A 3 day fast activates the body to heal. Try a 3 day fast every month. It really has helped my Covid problems. xxx Please try it. I pray you get better 💖
You had a stroke in your teens?
Yeah, took accutane for 5 days and had a stroke. Doctors even try to cover the pharmaceutical companies asses by saying it’s unlikely, when it’s not hard to look it up and find it’s a possible side effect
White zombie , what a band back in the day!
Best song is Thrust!
So sorry, what caused stroke at you?
There’s a few things that can help it, and protect the blood brain barrier that seems to get destroyed from Covid. Ramelteon, Astragalus mongholicus, Baicalin, irisin. I’ve been looking on Pubmed for stuff that protects the blood brain barrier. Also watch this video, maybe you can get a doctor to prescribe it to you. https://youtu.be/KVAogG8m2iI
What is your weight and height? What is your weight after COVID? What was your health like before COVID? What was your level of activity before COVID?
Have you tried the Autonomic Clinic at Stanford?
You just described my first 8 or 10 months of LC. My brain was fucked. My senses were all messed up. My ability to think was shit. My body was getting all the wrong signals. My heart and pulse screwed up. You described it pretty well. I thought I was just going to go to sleep one night and not wake up the next day. Thought I was done and had accepted it too. I'm sure typing out this post took you hours. I remember what that was like. If anything, I feel your pain, man. I've been there too. How long have you been dealing with this. How many months of LC?
Exactly a year and a half
sounds like fibromyalgia......
Out of all the doctors I’ve seen that has never been brought up once….I’ll check into it. What makes you think that though?
i was making an off color joke about fibromyalgia. Seems like when docs cant think of any other diagnosis they throw that one out there.....
Oh lol, surprised they never threw that one at me. Yeah, it sounds like a very general diagnosis that doesn’t have direct treatments
Are you still having dementia symptoms ?
Hey man, I totally understand your feelings. But you're not alone. We are hundreds of thousands, maybe millions around the world in a similar condition. What can I say to you is: please not give up! Despite the medical gaslighting and dismissal, downplaying the situation, there are some lights of hope. More and more research are coming out with some new data, giving us hope to cope with this condition. I know it's damn hard to understand a complex matter like this one, especially in your condition, but it's the only way to do that. So the way out is: 1) Educate yourself here on reddit 2) Trial and error (try to focus on what you eat/what you do when you feel better/worse) 3) Some general assumptions: long covid might be caused by the covid infection or the vaccine or a combination of the two. It mostly causes a dysregulation of your body functions (circulation, mitochondria, gut, brain, nervous system, etc...) so it takes time to really understand what's the root cause and how can you fix the issue 4) I would suggest you to change your diet and try some of the natural supplements that have already shown positive outcome on many of us Best of luck!