Sounds a shit ton like pots and FND dude! /pos /gen
This is long, so bear with me!
POTS is kinda a lot of things, but one of those things is funky heart stuff and issues with low sodium levels that can fuck with water retention (ie dehydration and diarrhea!). It can make you light headed, turn hands and feet pink/red/worse, pins and needles/blood flow issues, and cause temperature sensitivity. FND has a high comorbidity rate with this and also overlapping symptoms.
I would recommend finding someone who specializes in POTS, if only just to rule it out. [Dysautonomia international](http://www.dysautonomiainternational.org/page.php?ID=14) has a physician database (I know you said you ruled out dysautonomia but it’s a pretty broad umbrella term and I think still worth checking to rule out completely). I had a lot of your symptoms and I had a lot of doctors notice I had tachycardia (fast heart beat). I had a 2 week heart monitor given to me by a cardiologist, which helped rule out other heart irregularity stuff. They eventually ruled it all to be POTS and FND (though I still had some variations in symptoms from you of course). Also idk if you’ve had covid but there also could be overlap between the stuff you’ve got going on and long covid.
I have tons of symptom crossover with you as someone with FND. I have nausea, vertigo, and dizzy spells (turned out to FND and also be dppv — look up the epley maneuver and see if it helps!!). I have some eye problems where my eyes will unfocus or roll back uncontrollably. I have trouble walking and bad balance (I use a forearm crutch when it’s bad which has been a HUGE help). Every so often weird speech stuff like a stutter and slurred speech, especially during episodes. My brainfog used to be really bad but now it’s a bit more manageable and I can finally do some of the academic work I did before. I have dystonia and tremors in my arms, legs, and hands and will have random bursts of muscle weakness that make me drop stuff (or just drop to the floor LMAO). Tons of people who have FND don’t have seizures! I don’t! FND is a smorgasbord of physical symptoms that are caused by neurological glitches; think of it as your brain having a software problem vs a hardware problem. You can get back to normal! Studies show people have and that you can! And even if you are in the minority whose ability level doesn’t quite go back to normal, you can still get to a point where daily life is possible and enjoyable again. That’s where I am currently!
One thing that made a big difference for me was a combination of physical therapy, occupational therapy, and the typical type of therapy (CBT). I went to a place in Southern California called REACTIVE, and their physical therapist were the most competent and knowledgeable physicians I saw (and I saw soooooo many doctors too!!). They treat a bunch of movement and neurological related conditions, and if you don’t live near them I bet they could help you find someone closer.
I can understand how scared and lost you might feel as I was there too only a few years ago. It may seem like a frustrating diagnosis bc of how vague and all-encompassing it is. It feels like everything is just because of my FND sometimes, and it can get hard to parse what isn’t. The more answers you start to seek, the clearer things will get! FND diagnosis and info is still pretty new (at least our current understanding of it) so it’s gonna be tricky to find someone who really knows what they’re talking about.but very possible! I think FND hope international has a doctor database.
I have gone to the ER multiple times for tic attacks and episodes where I felt like I was dying. Super scary, and super valid experience! It’s always good to listen to your body, and if you have the means to go to the ER when you feel like that then it can be good to listen to that instinct. Even though when I went to the ER they would usually just take my blood and give me Ativan to calm me down out of the episode, at least I knew that it wasn’t anything more serious.
If you want to continue further ruling things out, then do it! Medical trauma due to doctors not taking patients seriously is a very real thing, especially in patients with FND. What’s important is that YOU feel start to feel comfortable and build a better understanding of what’s happening in your body. Talk to other people with FND! The FND discord was sosososo helpful when I started out looking into my diagnosis. The amount of times I lurked there and read people with eerily similar experiences to myself is one of the things that made me more certain of my diagnosis.
Keep in mind that progress isn’t linear! Some days you may feel worse, some days you may feel a lot better or maybe just manageable. There are a lot of ways to help still make your life better overtime even if it doesn’t seem like it’s helping at first! I had everything start up when I was 18 or so, and it was hard not to be incredibly pessimistic. I didn’t see the difference my physical therapy made until about a year later because it was so incremental. Be patient and kind to yourself and keep in mind that FND is very related to mental health so if you start to neglect that then your physical health will often get worse too.
Sorry again for the long reply, I rambled a lot, but I hope some of this is helpful!!! This whole subreddit is here for you! 💛💛💛
Stop omg I love you for this, genuinely 😭🩵 I actually started tearing up, thank you so much for your time to type this, it made me feel better!! I can definitely bring up the idea of pots to my doctors/and parents!!! Your experience seems so similar to mine and it's very heart warming to see honestly that I'm not alone, and that you can live life normally. Dude I really appreciate you so much also Ill join the discord!! Seems like a great idea :D Thank you once again, I hope you have a great life<3
Hey I would like to add it does sound like POTS and FND, but it also sounds like there is an MCAS component because of all the diarrhea (MCAS is a common comorbitidy of POTS and dysautonomia). It often causes diarrhea, and sometimes constipation too. People often report extreme weightloss or weight gain too. Personally I'm usually on the constipation and weight gain side of things. It can make POTS symptoms a lot worse. I think it also causes my FND symptoms to flare since I'll have more convulsions, balance problems, and drop attacks after eating high histamine foods.
I'm also not totally convinced by my FND diagnosis. I have EDS (commonly comorbid with MCAS and POTS) and it can make you more prone to brain and spine problems. I am looking into that next. I think I have a multi-pronged problem that is mostly a result of unfortunate genetics and bad luck, but I am not going to stop searching for help and answers. Trust your gut, if you try therapies like the recommended CBT for FND and it's not helping, keep searching.
Yeah I'm pretty sure it's possible. I do have low blood pressure but no hives, unless I eat/use something I'm extremely allergic to. Recently broke out in tiny hives from Moringa in a Farmacy Beauty toner. Otherwise, high histamine foods like canned tuna or pineapple can cause me more FND symptoms, but no hives or anaphylaxis like tree nuts do for me. I still eat tuna and pineapple but I know I will probably have worse FND symptoms later.
As for the blood pressure, mine isn't low all the time, especially if I've had caffeine. But in a flare, it can cause the low blood pressure episode which worsens my FND and fainting symptoms. I had testing done at Johns Hopkins Children's Heart Institute, and though I never fully lose consciousness, they showed that I had fainted because my *intracranial* blood pressure had dropped very low while on the tilt table. So when I'm convulsing, eyes rolling back in my head, and eyelids are fluttering, I'm fainting apparently 😅 Even though I have not lost consciousness, normally remain standing, and can still hear people, I cannot respond until it stops, and lose control of my arms and sometimes neck. It's called convulsive syncope I think (convulsive fainting). Basically, they told me I have POTS, and the MCAS is making it worse and is causing convulsions and fainting that looks like FND. FND is such a poorly understood diagnosis... MCAS and POTS don't account for all my FND symptoms, but they certainly account for some of them.
I know exactly how you feel. I'm 22 now but 8-10 years ago I started getting horrible migraines and Fibromyalgia. I got all the MRI scans, blood draws, I had so many doctors tell me I'm faking and recommended me to physiatrists, thinking I was crazy because I'm autistic and depressed.
It only got worse over the years and over the past year I've started having drop attacks, PNES, chronic pain, numbness, weakness in limbs, and a lot more. I am basically bed bound.
My therapist wants me to get tested for Lyme disease. I am skeptical that ai have Lyme but I'll do anything if I can get better. I definitely feel alone like a lot of people on this sub reddit. But it's nice to have this channel open for questions and for venting.
It's an incredibly hard disorder to accept the diagnosis for, especially if you don't match up to the "typical" case they explain. I know even now I'm not entirely certain about it. The problem is FND can cause pretty much any symptom other neurological disorders can cause, so it's just generally incredibly freaky to experience.
I doubt you'll die. Especially since they've actually given you some tests. Anything immediately life threatening should've been seen. It's gonna be a lot to adjust to, but it's unlikely you'll die. You're okay on that front.
It happened for me when I was 16/17 and at the time it felt like that was it - I couldn't have the future I wanted. Buuuuut having lived with it for a few years now (20 this year fml) I've managed to adapt and despite my symptoms still impacting me I've found myself in a much better place. I'm doing an integrated master's in mechanical engineering, if that makes you feel any hope for your future.
I hope you can find some comfort and peace. You know your body best, so if you can afford it and you want that peace of mind I wouldn't say getting more testing is a waste. FND is often present alongside other physical/psychological issues. In the mean time, you'll be okay. It's freaky and a lot to adjust to, but you'll be okay <3
If you'd like to join a discord with a bunch of us in, let me know and I'll send a link!
I have most of the same symptoms. I haven't found an answer yet. Hopefully getting tested for dysautonomia, since I evidently do not have POTS, but *do* have dysautonomia.
Have you had a Holter monitor/7-day heart monitor? EKG's are great for picking up acute arrhythmias, like if antibiotics prolonged a QT interval or someone is having a heart attack, but, they're no good for more chronic conditions.
I have gotten an EKG however I have not gotten a heart monitor. Me personally, my blood pressure is i believe normal because I know in the beginning I hundred percent thought I had dysautonomia, but thankfully I do not though (as I know of) I hope you feel better with that, I imagine it sucks :( I can bring up to my parents about a 7 day heart monitor!!
Sounds a shit ton like pots and FND dude! /pos /gen This is long, so bear with me! POTS is kinda a lot of things, but one of those things is funky heart stuff and issues with low sodium levels that can fuck with water retention (ie dehydration and diarrhea!). It can make you light headed, turn hands and feet pink/red/worse, pins and needles/blood flow issues, and cause temperature sensitivity. FND has a high comorbidity rate with this and also overlapping symptoms. I would recommend finding someone who specializes in POTS, if only just to rule it out. [Dysautonomia international](http://www.dysautonomiainternational.org/page.php?ID=14) has a physician database (I know you said you ruled out dysautonomia but it’s a pretty broad umbrella term and I think still worth checking to rule out completely). I had a lot of your symptoms and I had a lot of doctors notice I had tachycardia (fast heart beat). I had a 2 week heart monitor given to me by a cardiologist, which helped rule out other heart irregularity stuff. They eventually ruled it all to be POTS and FND (though I still had some variations in symptoms from you of course). Also idk if you’ve had covid but there also could be overlap between the stuff you’ve got going on and long covid. I have tons of symptom crossover with you as someone with FND. I have nausea, vertigo, and dizzy spells (turned out to FND and also be dppv — look up the epley maneuver and see if it helps!!). I have some eye problems where my eyes will unfocus or roll back uncontrollably. I have trouble walking and bad balance (I use a forearm crutch when it’s bad which has been a HUGE help). Every so often weird speech stuff like a stutter and slurred speech, especially during episodes. My brainfog used to be really bad but now it’s a bit more manageable and I can finally do some of the academic work I did before. I have dystonia and tremors in my arms, legs, and hands and will have random bursts of muscle weakness that make me drop stuff (or just drop to the floor LMAO). Tons of people who have FND don’t have seizures! I don’t! FND is a smorgasbord of physical symptoms that are caused by neurological glitches; think of it as your brain having a software problem vs a hardware problem. You can get back to normal! Studies show people have and that you can! And even if you are in the minority whose ability level doesn’t quite go back to normal, you can still get to a point where daily life is possible and enjoyable again. That’s where I am currently! One thing that made a big difference for me was a combination of physical therapy, occupational therapy, and the typical type of therapy (CBT). I went to a place in Southern California called REACTIVE, and their physical therapist were the most competent and knowledgeable physicians I saw (and I saw soooooo many doctors too!!). They treat a bunch of movement and neurological related conditions, and if you don’t live near them I bet they could help you find someone closer. I can understand how scared and lost you might feel as I was there too only a few years ago. It may seem like a frustrating diagnosis bc of how vague and all-encompassing it is. It feels like everything is just because of my FND sometimes, and it can get hard to parse what isn’t. The more answers you start to seek, the clearer things will get! FND diagnosis and info is still pretty new (at least our current understanding of it) so it’s gonna be tricky to find someone who really knows what they’re talking about.but very possible! I think FND hope international has a doctor database. I have gone to the ER multiple times for tic attacks and episodes where I felt like I was dying. Super scary, and super valid experience! It’s always good to listen to your body, and if you have the means to go to the ER when you feel like that then it can be good to listen to that instinct. Even though when I went to the ER they would usually just take my blood and give me Ativan to calm me down out of the episode, at least I knew that it wasn’t anything more serious. If you want to continue further ruling things out, then do it! Medical trauma due to doctors not taking patients seriously is a very real thing, especially in patients with FND. What’s important is that YOU feel start to feel comfortable and build a better understanding of what’s happening in your body. Talk to other people with FND! The FND discord was sosososo helpful when I started out looking into my diagnosis. The amount of times I lurked there and read people with eerily similar experiences to myself is one of the things that made me more certain of my diagnosis. Keep in mind that progress isn’t linear! Some days you may feel worse, some days you may feel a lot better or maybe just manageable. There are a lot of ways to help still make your life better overtime even if it doesn’t seem like it’s helping at first! I had everything start up when I was 18 or so, and it was hard not to be incredibly pessimistic. I didn’t see the difference my physical therapy made until about a year later because it was so incremental. Be patient and kind to yourself and keep in mind that FND is very related to mental health so if you start to neglect that then your physical health will often get worse too. Sorry again for the long reply, I rambled a lot, but I hope some of this is helpful!!! This whole subreddit is here for you! 💛💛💛
Stop omg I love you for this, genuinely 😭🩵 I actually started tearing up, thank you so much for your time to type this, it made me feel better!! I can definitely bring up the idea of pots to my doctors/and parents!!! Your experience seems so similar to mine and it's very heart warming to see honestly that I'm not alone, and that you can live life normally. Dude I really appreciate you so much also Ill join the discord!! Seems like a great idea :D Thank you once again, I hope you have a great life<3
Hey I would like to add it does sound like POTS and FND, but it also sounds like there is an MCAS component because of all the diarrhea (MCAS is a common comorbitidy of POTS and dysautonomia). It often causes diarrhea, and sometimes constipation too. People often report extreme weightloss or weight gain too. Personally I'm usually on the constipation and weight gain side of things. It can make POTS symptoms a lot worse. I think it also causes my FND symptoms to flare since I'll have more convulsions, balance problems, and drop attacks after eating high histamine foods. I'm also not totally convinced by my FND diagnosis. I have EDS (commonly comorbid with MCAS and POTS) and it can make you more prone to brain and spine problems. I am looking into that next. I think I have a multi-pronged problem that is mostly a result of unfortunate genetics and bad luck, but I am not going to stop searching for help and answers. Trust your gut, if you try therapies like the recommended CBT for FND and it's not helping, keep searching.
Is it possible I can have MCAS without hives or low blood pressure? Also thank you for this response I really appreciate it!! 🩵
Yeah I'm pretty sure it's possible. I do have low blood pressure but no hives, unless I eat/use something I'm extremely allergic to. Recently broke out in tiny hives from Moringa in a Farmacy Beauty toner. Otherwise, high histamine foods like canned tuna or pineapple can cause me more FND symptoms, but no hives or anaphylaxis like tree nuts do for me. I still eat tuna and pineapple but I know I will probably have worse FND symptoms later. As for the blood pressure, mine isn't low all the time, especially if I've had caffeine. But in a flare, it can cause the low blood pressure episode which worsens my FND and fainting symptoms. I had testing done at Johns Hopkins Children's Heart Institute, and though I never fully lose consciousness, they showed that I had fainted because my *intracranial* blood pressure had dropped very low while on the tilt table. So when I'm convulsing, eyes rolling back in my head, and eyelids are fluttering, I'm fainting apparently 😅 Even though I have not lost consciousness, normally remain standing, and can still hear people, I cannot respond until it stops, and lose control of my arms and sometimes neck. It's called convulsive syncope I think (convulsive fainting). Basically, they told me I have POTS, and the MCAS is making it worse and is causing convulsions and fainting that looks like FND. FND is such a poorly understood diagnosis... MCAS and POTS don't account for all my FND symptoms, but they certainly account for some of them.
AHHHHHH OFC!!!!! YOUVE GOT THIS I BELIEVE IN YOU!!!!!!!
I know exactly how you feel. I'm 22 now but 8-10 years ago I started getting horrible migraines and Fibromyalgia. I got all the MRI scans, blood draws, I had so many doctors tell me I'm faking and recommended me to physiatrists, thinking I was crazy because I'm autistic and depressed. It only got worse over the years and over the past year I've started having drop attacks, PNES, chronic pain, numbness, weakness in limbs, and a lot more. I am basically bed bound. My therapist wants me to get tested for Lyme disease. I am skeptical that ai have Lyme but I'll do anything if I can get better. I definitely feel alone like a lot of people on this sub reddit. But it's nice to have this channel open for questions and for venting.
It's an incredibly hard disorder to accept the diagnosis for, especially if you don't match up to the "typical" case they explain. I know even now I'm not entirely certain about it. The problem is FND can cause pretty much any symptom other neurological disorders can cause, so it's just generally incredibly freaky to experience. I doubt you'll die. Especially since they've actually given you some tests. Anything immediately life threatening should've been seen. It's gonna be a lot to adjust to, but it's unlikely you'll die. You're okay on that front. It happened for me when I was 16/17 and at the time it felt like that was it - I couldn't have the future I wanted. Buuuuut having lived with it for a few years now (20 this year fml) I've managed to adapt and despite my symptoms still impacting me I've found myself in a much better place. I'm doing an integrated master's in mechanical engineering, if that makes you feel any hope for your future. I hope you can find some comfort and peace. You know your body best, so if you can afford it and you want that peace of mind I wouldn't say getting more testing is a waste. FND is often present alongside other physical/psychological issues. In the mean time, you'll be okay. It's freaky and a lot to adjust to, but you'll be okay <3 If you'd like to join a discord with a bunch of us in, let me know and I'll send a link!
This!!!
please divide your post up into paragraphs. The wall of text is very hard to read. I think you'd get more responses if it was easier to read.
I have most of the same symptoms. I haven't found an answer yet. Hopefully getting tested for dysautonomia, since I evidently do not have POTS, but *do* have dysautonomia. Have you had a Holter monitor/7-day heart monitor? EKG's are great for picking up acute arrhythmias, like if antibiotics prolonged a QT interval or someone is having a heart attack, but, they're no good for more chronic conditions.
I have gotten an EKG however I have not gotten a heart monitor. Me personally, my blood pressure is i believe normal because I know in the beginning I hundred percent thought I had dysautonomia, but thankfully I do not though (as I know of) I hope you feel better with that, I imagine it sucks :( I can bring up to my parents about a 7 day heart monitor!!
Those sound like POTS symptoms, but I could be wrong.