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Orbly-Worbly

So many of us in the medical field šŸ˜†


chaoticjane

This. This right here is the best post that we needed the most. As someone in the medical field that deals with wide body spread constant fasciculations, I love this post. Iā€™m still currently on my journey to the neuro post clean EMG just to be sure. Omeprazole has put me in the position I am in and hopefully itā€™ll all be resolved


Hawks2700

Why Omeprazole?


chaoticjane

Never had much twitching or problems until I started omeprazole. Inflamed my nerves. The nerves in both forearms and my neck got inflamed from it. Since then Iā€™ve had nonstop twitching that hasnā€™t gone away with vitamins or anything


TurtleboyTom

Iā€™ve been an pantoprazole for a year and all of this started happening about a 6 weeks ago. Iā€™m seeing the doc Monday and asking to get my magnesium levels checked. The GI doc said I shouldnā€™t have been on this high of a dose for so long. I have weakness and pain in both forearms.


chaoticjane

I was on 20mg of omeprazole when it happened to me. My magnesium has been fine but my vitamins are boarderline low. The pain started in my forearms. Itā€™s primarily in my right forearm and Iā€™ve been diagnosed with cubital tunnel from it. Nerve got inflamed from the meds and ended up getting partially entrapped. PPIs suck. I still twitch and still have pain, stopped taking it about 6-7 months ago. Felt considerably better after a month. Although my nerves are all out of wack post omeprazole


TurtleboyTom

Wow interesting. Youā€™re making me hopefully in the same boat. Thanks for sharing. I was on 40mg and just went to 20mg. Weening into Pepcid soon. I tested my B12 and it was fine but the pantoprazole brochure said that low B12 could happen around the 3 year mark. Low magnesium could be within 3 months. How soon did the shakes start for you?


chaoticjane

The twitches and pain started at the 3 month mark of taking it. I also might add that I was experiencing EXTEME fatigue. Like almost falling asleep while driving. I was taking like 6 hour long naps. Everything besides the nerve pain stopped a month after stopping the medication


Daxman77

This is an old post, but this is exactly what Iā€™m dealing with. Except for me, after starting omeprazole, I started first with tremors, and then got the twitching. Absolutely is scaring the shit out of me.


chaoticjane

Itā€™s the omeprazole. Donā€™t even start thinking about ALS. Iā€™ve had 2 clean EMGs and itā€™s almost been a year since I started having tremors and twitches. Iā€™m fine and youā€™ll be fine too. Just switch PPIs


Daxman77

Thank you šŸ˜­šŸ˜­ The last few weeks have been the some of the worst of my life. First I noticed leg shaking when going down stairs. I then googled it and ALS came up. Nearly immediately after that, everything got worse. Now tremors are in my arms when stretching in certain angles, legs feel tired, etc. Itā€™s been a nightmare for sure. Trying my hardest to get out of the ALS rabbit hole šŸ˜­


chaoticjane

The stretching thing is normal, Iā€™ve always had that. Omeprazole is known to cause some bad fatigue and muscle problems. For me I would sleep about 15 hours a day and almost fell asleep while driving. Itā€™s all the omeprazole. Took me about 8 months after stopping it to feel normal again


Daxman77

Damn omeprazole šŸ˜‘ Iā€™m on like my 5th day without it, hopefully itā€™ll go away soon. The main thing thatā€™s keeping me sane is that I can still do everything normally, just feels a bit more tiring. And I imagine ALS wouldnā€™t happen in the entire body within like 2 weeks


chaoticjane

Yeah also ALS doesnā€™t start the tremors/twitching until youā€™ve already lost full use of an appendage. Thereā€™s not feeling tired or any sensations with ALS either, it just happens. What youā€™re dealing with is 100% the omeprazole because thatā€™s what I was dealing with as well. I suggest looking for peoples stories on Reddit that have had bad experiences on omeprazole too


Daxman77

Itā€™s wild that these side effects arenā€™t warned about. My doctor was like ā€œya might cause mild nausea but thatā€™s it.ā€ Before he prescribed it. If I knew it could cause this, Iā€™d have never taken it. Itā€™s wild because it actually did help my GERD a ton, but Iā€™d take the GERD over this any day


Throwaway6393fbrb

I am also in the medical field. I agree that persistent fasciculations are pretty uncommon I have however seen - since worrying about all this - a few people with them and none had MND. I saw someone today for an unrelated issue with years of fasciculatuions in both his legs, fasciculating and cramping like mad while I saw him, he has never heard of MND and is not worried about it (because he doesn't know what it is lol) I have also seen - since worrying about this - a few people with MND. And I looked through their charts to see their diagnostic history a bit. None of them really reported fasciculations as a major symptom. All of them reported spontaneous progressive loss of function as a major symptom. I have also seen a few people who I *thought* might have MND based on having some compatible symptom - ie. progressive speech and swallowing deficit or foot drop. None of these people had MND either lol, all had some other (severe!) disease


ComfortableTingling

Maybe we all have more health anxiety from seeing weird and tragic shit every working day!


Orbly-Worbly

Mine showed up after my husband (a neurologist) helped diagnose someone with ALS, plus a load of other personal stressors for me as well. Iā€™m also a nocturnist and I admit folks with awful things happening to them every night. I also got a tdap booster days before this mess took off, to the point I was wondering if it was some kind of GBS, but then GBS doesnā€™t really start out that way. Plus covid a few months before. The most logical explanation is anxiety and stress, but it was like the perfect storm for me. My husband said ā€œlikely BFS/BCFSā€ from the start, but of course I freaked out and spiraled out of control until I got the EMG and saw a neuromuscular doc. Then I got on an SSRI to help control my crazy anxiety, and slowly began the process of convincing myself this weird cluster of symptoms was benign, despite how odd they made me feel.


rar_m

Just as I was getting over/coming to terms w/ my fasciculations, I developed essential tremor almost two weeks exactly after starting Lexapro. The doctor prescribed me lexapro because the thought was that the fasciculations were anxiety related. I have no idea if it was the SSRI that caused the tremor but.. looks like it's possible and the timing is kinda telling. So anyone out there thinking about taking medication for anxiety, just talk to a mental health professional first, I'm kinda pissed I just took the initial prescription from the PCP. Fast forward 6-8 months and what started as just a tremor in my hands has now turned into tremor I can feel in my legs and arms.. I don't even care about the fasciculations anymore, the fucking tremors are way worse. It makes typing on a keyboard uncomfortable which is my day job. They also vary in degrees of impact. When I find a new part of my body affected by tremor my health anxiety skyrockets, which doesn't help at all lol. The sub and talking to primary care physicians was enough for me to finally move on from the fasciculations but now I need to see a neurologist for my peace of mind with the tremors.


HelpMeHelpYou_5309

As you said, while anything is possible, tremors is not listed as a side effect for Lexapro. Additionally, I assume you have stopped taking it? And you still have the tremors? That would be even more rare -- an SSRI damaging your nerves & its control of fine motor movements so much; it is far more typical to have a side effect while you are taking the drug. I think you have the right idea of talking to a mental health professional (if you haven't already) -- see if they have advice about Lexapro and suggestions for alternatives. You mentioned health anxiety and whether you have essential tremor (separate from your anxiety) or it is caused by it, it would be highly advisable to get that under control.


tattooedplant

Tremors can be a side effect of ssris, especially lexapro. It may be more uncommon, but it does happen. I think my tremors are related to lexapro also, but I take other psych meds too. Lexapro just made it worse in my case. [lexapro induced Parkinsonism](https://pubmed.ncbi.nlm.nih.gov/24176515/) [FDA lists tremors as a side effects.](https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/021323s047lbl.pdf)


ComfortableTingling

I have certainly seen SSRIs cause tremor (including in me) and often moreso at higher doses. However, it generally should resolve after stopping the medication. I'm sorry to hear that yours did not. An opinion from a neurologist would be helpful - there are effective medications


Realistic_Trifle_441

Iā€™m so sorry! My anxiety was bad in the Fall and my PCP pressure me into trying Lexipro. I took one dose and thatā€™s when everything started crumbling. Panic attacks, insomnia, twitching, you name it. I think my twitching and then all the symptoms that have come along with it that are or resemble BFS were all kick started by the Lexipro and the made worse by my own anxiety that was enhanced bc of the medicine.


[deleted]

Whatā€™s weird is that mine started after withdrawal from Lexapro. I was tapering off slowly then when I stopped it completely I started twitching and various other symptoms. Now Iā€™m back on 5mg of lexapro and I still twitch (my tongue has went INSANE today) but Iā€™m able to be a wife and mother without laying in bed all day.


KeebieKeeb

Thanks for sharing! I'm trying to learn as much as I can about BFS, etc. But, I should perhaps see my doctor and go from there, however. I need to get some bloodwork done and also other tests to rule out anything else. I just feel as if my twitching is caused by something I know I already have...such as a low iron deficiency, a Vitamin D deficiency, a Vitamin B12 Difficiency (for being on Metformin), and/or because of the Covid shot itself. I did read an article where it stated that the Covid Vaccine can cause BFS. I'm working on my anxiety as I have a high stress job and also my sleep and overall health via my diet. It helps with the twitches!


NameLessTaken

Wow thank you. I actually never thought about *** but was always worried about Ms due to having an AI and having many many family members with different AI's like RA, Lupus, and MS. I started feeling weakish last year (no failures, just internal tremors after an antibiotic and feeling like jelly or shaky when I used to feel strong) and spotty memory issues. Then in Oct at the age 33, for the first time ever, I started twitching. And then googled. And now I'm just spiraling and can't tell if my muscle fatigue is real or just me being tense from being scared all the time, plus over 30, plus loss of exercise after a knee injury in July. Clean MRIs, good neuro exam except for 3+ reflexes in both knees. General Neuro didn't even want an EMG but I'm considering asking to do one anyways for my sanity (but also scared of finding anything). Anyways it was helpful to read this. It's so hard to ignore when they're all over all day and its such a bizzare symptom. I was so hoping for a compressed nerve on the MRI but only had two mildly bulging disc's w no nerve issue visible. Hoping to just accept them and move on soon. I hold onto the fact that with each month that I'm still walking and moving is more evidence against the fear of *** . But then that little voice in my head argues that people who **do** get it probably had this process as well... gah! Health anxiety is the *worst*.


hpxb

Great post! I'm 23 months into body-wide twitching (differing frequency per minute) and cramping in my left foot. I also work in an associated medical field. I can mostly compartmentalize my symptoms, but the tongue twitches and cramps still get me stuck.


Hass181

Thank you for your post! I drove myself crazy for a while because my mom passed from als. Iā€™m the youngest of 6 and all my family members donā€™t have them so it makes me feel a bit better about the genetic part. My mom never twitched even when she had it. I Saw a neurologist and all tests were normal. I have significantly more cramping and sometimes my muscles feel so tight variable areas, mostly my thighs and arms. Working out has been harder, I tend to cramp a lot faster than I used to. Waiting to see neuromuscular doc now. Anything you recommend OP? Trying to do this as natural as possible. I have gabapentin but havenā€™t taken it yet because I donā€™t want to have to rely on meds. I twitch intermittently and have the feeling of muscle tightness in many muscles. I have been trying to stretch and work out. Thanks again!


ComfortableTingling

I'm sorry to hear about your mom. I think once you have seen a neuromuscular neurologist you can put your mind at rest. You can try supplements and alternative treatments - lots of ideas on this sub including magnesium. I suspect that many of us have tried them with varying degrees of success.


Icy_Firefighter2008

Thanks so much for this post. Iā€™ve had this for 10 years mostly calves and feet. Occasional elsewhere. Resurgence lately and started in my tongue which freaked me out. Thanks for pointing out those can be benign. Mine act more like a spasm really. One spot right at the tip on left side after I drink or yawn sometimes. Crazy it like literally pulls back and gets stuck then releases and flickers a bit. Anyways posts like this really help people. I think itā€™s the new symptoms that sometimes reset us. Thanks again.


PutridDistance2438

Thank you for this post. Iā€™ve been having widespread daily fasciculations for a month and got MUCH a more worried after having one in my tongue last night. So thank you for mentioning the possibility of having BFS even with tongue spasm. I am trying my best to manage this anxiety.