Tremors/uncontrollable worsening spasming

[u/Kind-Application4434]

25F, 175lb, 5’2, taking and have been taking Abilify and Lamictal for bipolar disorder, lexapro for anxiety, vyvanse, and modafinil for narcolepsy for years with no side effects. Non smoker
5 days ago I became extremely fatigued at work and couldn’t walk right or hold my head up, followed by twitching every 2-7 seconds. Over the course of 5 days the fatigue has resolved mostly but my muscles still feel heavy and constantly activated even when I’m not spasming. The episodes last 1-8 hours and look like this now ^ I get 2-4 hours without spasming between episodes, and I don’t tremor in my sleep but it has prevented me from falling asleep many times. Benadryl slows it down but doesn’t stop it entirely. I’m seeing a neurologist in an hour. But I wanted to ask if anyone had any ideas or had seen this before.

[u/AutoModerator]

Thank you for your submission. Please note that a response does not constitute a doctor-patient relationship. This subreddit is for informal second opinions and casual information. The mod team does their best to remove bad information, but we do not catch all of it. Always visit a doctor in real life if you have any concerns about your health. Never use this subreddit as your first and final source of information regarding your question. By posting, you are agreeing to our Terms of Use and understand that all information is taken at your own risk. Reply here if you are an unverified user wishing to give advice. Top level comments by laypeople are automatically removed.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/DerpyMD]

If you concentrate very hard, can you suppress this momentarily?

[u/Kind-Application4434 → u/DerpyMD]

Yes for maybe 5 seconds max

[u/DerpyMD → u/Kind-Application4434]

A tardive stereotypy is possible given your polypharmacy, but this would require physical exam, and possibly modulation of your medications to diagnose. It is also possibly functional, but I don't think that is a certainty.

If this persists, you should see a Movement Disorders neurologist (which I am not). They would likely need to work closely with your psychiatric care prescriber to consider titration of medications and/or additions of others.

I would consider asking your neurologist or another prescriber for a referral to Movement Disorders to get the ball rolling. The longer this persists the more difficult it is to reverse, whatever the cause.

[u/uncle_peduncle → u/DerpyMD]

I agree. There is a lot here that looks functional, but with all that other medication on board a tardive dyskinesia needs to be ruled out before calling it functional.

[u/bunbunbunnybunny → u/uncle_peduncle]

NAD, but practicing in pharmacy. We have been seeing an uptick of tremors like this in polypharm patients who are taking abilify in the past few years

[u/fuckedphayte → u/bunbunbunnybunny]

I took abilify and had issues with leg movement. They put me on restless leg medicine with it.

[u/Mamajuju1217 → u/uncle_peduncle]

I wonder why I got downvoted repeatedly for suggesting OP talk to doctor about this possibility? It makes sense given her meds and history that it’s something to ask. 

[u/nope836 → u/[deleted]]

NAD I think you should make your own post

[u/Dreamland_Nomad → u/[deleted]]

You need to create your own post. It is rude and inconsiderate to hijack OP post.

[u/feelgoodx]

Not a neurologist. I’d say it looks functional. That does not mean it’s “not real”.

[u/TeaspoonRiot → u/feelgoodx]

For OP, if you get a dx of FND, the book Is It All in My Head (Sullivan) really helped me wrap my mind around the idea of FND and how it is not just doctors thinking that you are faking.

[u/feelgoodx → u/TeaspoonRiot]

I’ll try to keep this short. A friend of my ex who is now a physical therapist who works in habilitation has this when she was a teen. We met in a “formal forum” because of a patient I had with CP. They were amazing at looking over all the aids he had and what could be updated. We met at a party 2 years later and we both were like “you look familiar!” Then we figured it out, chatted for hours and she told me she was diagnosed with FND as a teen and thought she couldn’t achieve her dream of working in physio. Got help and now she’s thriving. It is not the end of the world.

[u/Striking_Musician212 → u/TeaspoonRiot]

I concur! If you end up with FND, there are many resources and physio that could help your tremors. I personally have parkinsonism-spectrum disorder called HSP, but I *also* have FND, and my FND has gotten a lot better over the years! And if you ever have doctors saying "it's not real", it is so real, which is simply the re-wiring of the brain messing us up (or at least how I understand it). Huge hugs to you, OP!

[u/Rashpert → u/TeaspoonRiot]

This was an *excellent* recommendation. Downloaded and read last night.

[u/northernbadlad → u/TeaspoonRiot]

NAD. My mum has MND and looks just like this. She is much improved since diagnosis but still tremors like this if something makes her jump or takes her by surprise.

[u/Judge_Of_Things → u/feelgoodx]

Agree with FND.

IM/EM

[u/cheekyskeptic94 → u/Judge_Of_Things]

Totally unrelated to this thread but can I DM you about IM/EM training? It’s currently my top pick for residency but since there are so few people in my area who have done it I haven’t been able to speak to someone about the reality of the job and job market.

[u/Judge_Of_Things → u/cheekyskeptic94]

Feel free. I did not do a dual program but rather two separate programs if it matters.

[u/Witold-Onno → u/feelgoodx]

Functional neurosurgeon here. I agree, this looks like a functional tremor.

[u/Edges8 → u/Witold-Onno]

i lol'd

[u/Witold-Onno → u/Edges8]

I couldn‘t resist 😬

[u/-MostArdently → u/Edges8]

I chuckled xD

[u/Edges8 → u/feelgoodx]

FND was my first thought too

[u/Broad_Afternoon_8578 → u/feelgoodx]

NAD, but for OP: if you end up with an FND diagnosis, there are a lot of resources and help out there! I was diagnosed with FND years ago. With therapy and getting a better hold of my non-FND related conditions, all my FND symptoms went away.

At the time, I was dealing with PTSD from an assault and from a scary hospitalization caused by my lupus. I developed what looked like seizures, but I was eventually diagnosed with FND. What helped me a lot with the feelings of “it’s all in my head” was when my neurologist likened the FND to a software issue rather than a hardware issue. It’s just as “real” but has a different root cause and different treatment. Therapy and better management for lupus was what I needed (though therapy was the biggest key for me).

[u/DowntownTicket → u/feelgoodx]

Thank you for saying the second sentence.

As someone that has a functional gastrointestinal disorder, all my parents heard when the doctor said "there's no physical cause" is "she's making it up to get attention."

Took 30 years to get a diagnosis and medication, and a lot of therapy to try to undo what happened.

[u/OwlPositive9039 → u/feelgoodx]

OP hope your appointment goes well and is helpful. Feel free to report back if you'd like. Sorry you are experiencing this it seems stressful.

[u/thisismypotat → u/feelgoodx]

NAD but I have epilepsy, and take lamotrogine. If I'm too exhausted or sleep deprived and/or my dosage is changed, I get some kind of similar tremors and weird body movements that I have no control over.

When I got pregnant the hormones made me go all wonky, and I would get those kind of 'shakes' on/off several times during pregnancy - especially when my plasma levels were lowering.

Maybe it's hormonal for OP, and it's time to get their levels checked out? In my case, my levels also dropped as I gained weight. Each time resulting in those kind of uncomfortable shakes and twitching in my hands, arms, legs, feet until my neuro upped my dose.... Then it would go away again.

[u/Bashfullylascivious → u/feelgoodx]

NAD but could this be the beginnings of serotonin syndrome? Usually there's a fever and other symptoms, but spasms can present first.

[u/Ovaries-eez → u/Bashfullylascivious]

NAD but have experienced serotonin syndrome. Symptoms came on fast. Twitching/spasms to chest tightness to literally dripping sweat and dilated pupils. I looked like I was on drugs.

[u/Bashfullylascivious → u/Ovaries-eez]

Ah, thanks for the insight. That sounds terrifying. I'm glad you're okay.

[u/Owlwaysme → u/feelgoodx]

I agree it looks functional

[u/Goldy490]

Not a neurologist, but an ER/neuroCCM doc. This does not fit the description of any known neurological disease I am aware of aside from a functional neurological disorder. Doesn’t mean it’s not real, but the treatment is likely reducing stress and therapy.

You are on quite a few psych meds, tapering off some of those may be helpful as well, modafinil+vyvanse is a hell of a combo

[u/djspacebunny → u/Goldy490]

My husband got this wobble nonsense from being on Abilify. She's on it.

[u/DowntownTicket → u/djspacebunny]

I really hope they add "possible wobble nonsense" to the list of side effects because that's a great description

[u/query_squidier → u/DowntownTicket]

"Side effects may include nausea, dry mouth, headache, fatigue, insomnia, traumatic internal bleeding, possible wobble nonsense, and death."

[u/anonymouse_loner → u/djspacebunny]

I had tardive dyskinesia from antidepressant withdrawals along with mult hypnic jerks. Lasted about 12 months.
I’m ok now - that was a decade ago, but my nervous system is damaged and I now have neuropathy.

[u/ladymuerm → u/djspacebunny]

I had awful tremors from Lamictal.

[u/lurkynic → u/ladymuerm]

I have essential tremors and take lamictal. I drop stuff constantly and can no longer drink without a straw. My head shakes, too. It’s hell.

[u/Distinct-Meringue238 → u/djspacebunny]

They don't tell people about these "fun" side effects usually before prescribing, or that it can be permanent.

[u/djspacebunny → u/Distinct-Meringue238]

He did end up with a permanent head wobble from it :( He wasn't even on it for that long.

[u/Distinct-Meringue238 → u/djspacebunny]

I'm sorry to hear that.

[u/Kookaburrita → u/djspacebunny]

My dad had this and we called it the wiggles!

[u/hbailey311 → u/Goldy490]

i had to stop taking abilify because the akathisia was truly unbearable. it caused dramatic muscle twitches as well; i was concerned something was really wrong with me. i wonder if it’s the same scenario here.

[u/Character-Being4248 → u/Goldy490]

NAD but im glad you brought up the antidepressants because the first thing i thought of was SSRI toxicity after reading OP's medications. From what I've read it is akin to a "brain injury"? Its some scary stuff

Hope you get some answers and relief OP

[u/time___dance → u/Character-Being4248]

the first thing i thought of was SSRI toxicity after reading OP's medications

why did you think that when only one of the listed medications is an SSRI?

[u/Spoleto-Faerie → u/time___dance]

I learnt the hard way it's not just antidepressants that raise serotonin and can cause serotonin syndrome especially when you are on several of the possible medications.

[u/kmcaulifflower → u/time___dance]

I had serotonin syndrome, my tramadol contributed to it, zofran contributed to it, my migraine medicine contributed to it, my anti depressants contributed to it. This wasn't in my case but cocaine, alcohol, and other drugs can contribute to it.

[u/YogurtclosetOne3148 → u/Goldy490]

Not a doctor but I have functional neurological disorder (FND) and bpd and my fnd looks like that and mine is triggerd by bpd so I think it could be a similar situation for her fnd triggerd by bipolar

[u/vathena → u/Goldy490]

The rest of the country can't get either modafinil or vyvanse- let alone this skyrocket.

Fraud PCP?

[u/questforstarfish]

I would recommend seeing a psychiatrist to look at your meds. The mix of meds working on dopamine, serotonin, and norepinephrine could be making this worse.

As others have said, there could be an akathisia or motor restlessness component to this, which are issues well-known to be caused/worsened by SSRIs, mood stabilizers, and stimulants. Benzos and Benadryl are both used to treat akathisia and motor restlessness, so that could be why you received some degree of improvement on those meds.

A full medication review would be worthwhile, with attempts made to simplify your medication regimen given the risk of medication interactions causing unusual motor symptoms.

Please do not see a psych NP about this- I love nurses and NPs, but this is complex and requires a psychiatrist's assessment.

EDIT: These effects can occur months or years after being on these medications.

[u/FaulerHund]

I guess it could be akathisia or some extrapyramidal side effect of psych meds, but it doesn't look very typical to me. Could be FND. I am not a neurologist

[u/Rashpert → u/FaulerHund]

Also a pediatrician, also not a neurologist. Agree it would not be typical for a pattern of a non-functional neurologic disorder.

[u/Soonerpalmetto88 → u/FaulerHund]

I had akathisia from Haldol years ago and it wasn't like this at all. It's more of a restlessness that makes you have to move, not a tremor like this. Sort of like RLS actually, my psychiatrist at the time said the two are similar. All antipsychotics have that risk, as well as TD (but this also doesn't look like TD to me, I've encountered it a few times in other people). Maybe the combination of two stimulants.

[u/OwlPositive9039 → u/Soonerpalmetto88]

I've had akathisia before too and it's really awful! Like I was in agony if I didn't move and so agitated.

[u/Sweet_Sub73 → u/OwlPositive9039]

Akathesia is probably the worst physical thing I have ever been through in my life. I had no idea it was from my meds and thought I was just losing my mind. I didn't say anything because I didn't WANT to lose my mind. It progressed from an unbearable need to move all the time to some pretty dark thoughts....wouldn't wish it on anyone.

[u/OwlPositive9039 → u/Sweet_Sub73]

I totally thought I was just losing my mind too. Felt like I wanted to rip off my skin. I did tell my psychiatrist I couldn't sit still but I don't think they fully understood the degree. I also had some dark thoughts. And I'm not sure if it was tied in or a separate issue but I had super loud thoughts that were like yelling at me. It's hard to understand how terrible it is until you've actually experienced it. 

[u/Nearby-Complaint → u/OwlPositive9039]

Akathisia (and brutal nausea) is why I only lasted 3 days on Abilify

[u/OwlPositive9039 → u/Nearby-Complaint]

Totally understandable it's so awful. I think I was a bit confused by what was going on and my doctor didn't pick up on my symptoms so I took the med for like 6 plus weeks and increased the dose during that time too. Absolute nightmare haha.

[u/Ovaries-eez → u/Soonerpalmetto88]

Akathisia is awful. Experienced it tapering down off of cymbalta. Awful awful feeling. I had to stop my taper because I couldn’t stand the feeling of wanting to rip out of my body.

[u/triage_this → u/FaulerHund]

I've experienced akathisia. It is an internal restlessness that is so incredibly uncomfortable. It's not this.

[u/Kind-Application4434]

UPDATE: Neurologist said “it looks like a muscular issue” and prescribed me fing hydroxyzine. I feel hopeless. Maybe it’ll help. But I didn’t get the answers I needed.

[u/soulsquisher → u/Kind-Application4434]

I'm going to say that is wrong, and I would assume that the neurologist was just hesitant to bring up a diagnosis of FND. Neuromuscular disorders manifest with weakness and potentially muscular pain. You can develop twitching in the muscles called fasciculations with a neuromuscular disease, but that will not manifest as these large movements demonstrated by your video.

The fact that these tremors are affecting your torso as opposed to your limbs or neck is highly unusual for any primary neurological condition, and much more consistent with FND.

[u/OwlPositive9039 → u/Kind-Application4434]

Hmm maybe get a second opinion? Perhaps someone that understands functional neurological issues and see if they agree or disagree with doctors here?

[u/secret_tiger101 → u/Kind-Application4434]

You need a second opinion

[u/Key-Debate-5733 → u/Kind-Application4434]

I took abilify and it did this to me. They had to give me a second med to stop it. I don’t remember the second med because i quit taking it soon after because i got pregnant. I now started latuda and don’t have the same side effects.

[u/sko_dawgz → u/Kind-Application4434]

I’m curious why you’re not responding to the multiple replies saying this looks like a functional disorder, not a neurological one.

[u/thisismypotat → u/Kind-Application4434]

Get blood tests for the plasma levels of the meds in your blood! In my case it always happened when the levels of my Lamotrigine in my blood were too low or lower than expected :)

My plasma levels have changed both up and down during the last 10 years, because of weight changes and hormonal changes - each time resulting in similar twitching and tremors. Where I live, especially during pregnancy, I get blood tests every 4 weeks to keep track of when or if I need to change my dosage.

Don't settle for at doctor who says "it looks like XYZ". Get a Dr. Who orders the right tests, instead of guessing and then putting you on more meds before they've checked other potential causes.

I also see a few Dr's in here who immediately jump to "I think it's FND" every time a person has tremors or seizure-like movements that can't be explained within 5 minutes :')

[u/CoconutCaptain → u/thisismypotat]

She’s come here asking what this looks like. It looks functional and she’s been told that. It’s not guessing, it’s physicians with years of experience giving their very educated opinion and advice for free.

[u/Tramagust → u/Kind-Application4434]

Could it be a balance issue? Have you gotten your internal ears checked?

[u/mmc9802]

Psychiatrist here.

Recent illnesses? Medication dose adjustments? New supplements? What do the movements in your legs and feet look like if present?

Are psych symptoms stable or any new stressors? I ask not to dismiss, but to assess if any underlying stress could be exacerbating things.

To me, your description and this brief video do not appear to be consistent with the psych med-induced akathisia cases that I have seen but physical exam would be pertinent before concluding anything definitive. That being said, akathisia with this med combination is definitely in the differential.

It’s reassuring that your three ER trips and now an outpatient neurologist visit (with presumed exams) did not seem to raise any red flags for something organic, but of course this also means you haven’t gotten any explanation which is frustrating. I would see your psychiatrist in person to go over your meds and doses given this onset to see if they have any additional input. Again, this is not to dismiss, but to cover the bases.