My body jerks 60 times a minute unless I take medication

Grammyof2

This started around 2004; jerking happened every few minutes back then. By 2013 it was so bad I had to retire early (had planned on age 70, retired at 66). I'd been faking random needs to move around the office a lot rather than just sit there jerking, but I was losing so much sleep that my new doc, a sleep specialist, wrote Do Not Drive in my chart.

Primary care and a succession of neurologists first said RLS, but no typical RLS meds worked, and I kept getting worse. The only thing that helped was banging my knees together over and over—hundreds of time during any car trip. I wound up needing two total knee replacements.

This sleep doc prescribed methadone, which worked well for years, but then he decided to lie! He claimed he was gradually switching me to buprenorphine, and using gabapentin to quiet the jerking until I was off methadone. (I don't know why he did this, but he did call after I’d quite seeing him and admitted he'd lied.)

He told me withdrawal from methadone had to take 6 months. I was a health-related professional, and knew it ordinarily takes three days at the longest. When I told him, he said I was wrong. I wanted buprenorphine because it's one of the latest RLS treatments, so I agreed to switch. But after a few months I couldn't bear the agony of jerking every six seconds night & day despite taking such huge doses of gabapentin that I had something resembling a seizure.

When he saw me doing jerking like this in his office, he referred me to a neurologist—who re-prescribed methadone (bless him!). After a year or so, he collaborated with my pain clinic (I have spine issues) to transition me to Suboxone, which has a longer half-life. I expect to take Suboxone forever, with some gabapentin on the side for breakthrough jerking (like what happened last night, sigh…).

While weaning off methadone, I discovered that my body now jerked 60 times minute: For a couple of days, whenever walking around and around the house left me exhausted, I lay on the guest room bed with my body jerking while I watched the minutes tick by.

An interventional radiologist's hypothesis is that I have either akathisia or myoclonus, though I have no known risk factors for either. Those are better diagnoses than RLS, since most docs kind of chuckle at RLS, assuming one's foot jerks now and then (one even said sleeping with a bar of soap at my feet would cure me). Remedies for both akathisia and myoclonus include opioids like methadone and Suboxone.

My own theory is that this originates in my lumbar spine. When jerking is about to break through my medications, I feel an odd electrical sensation down there. I try to distract myself, think of other things, but it gets stronger and stronger. We have a ceiling light with a round switch you turn from no light to a little, and more, then fully on. That's how this sensation works. It gets stronger and stronger, then one or both legs suddenly jerk. If it happens while I'm dozing, I feel like my lower body's trying to levitate off the bed.

Anyone else have this?

Rosie_Scope

Hi @Grammyof2, just wanted to pop in to say sorry that you haven't had a reply to this so far. This isn't something I've had experience with but it sounds like a challenging condition to live with.

Are you still in contact with any medical teams investigating your symptoms? It must be tough not knowing quite what it is.

Grammyof2

I see my interventional radiologist every six months to check the inevitable progression of my spondylolisthesis (my spine's vertebrae are kid of wiggly). My next appointment is September 18.

I've essentially given up trying to find an accurate name for my condition. My physiatry NP (in the same office) prescribes Suboxone and my geriatric primary care NP prescribes gabapentin. Access to these medications, which keep the jerking at bay, is vital.

My underlying worry is that if I ever wind up in a nursing home, my meds will either be stolen or overworked/underpaid aides won't bother to provide them. So my general plan is that if I start having dementia symptoms I'll get them confirmed by a neuropsychologist and find a place that provides assistance with suicide. I'd prefer not to pay $20,000+ to use Dignitas in Switzerland, but if push comes to shove I just might.

Right now, my SIRVA symptoms are disabling (left arm got vaccinated in the wrong spot), so is the serious arthritis and/or gout in my feet that make walking hurt a LOT despite my meds, and my spondylolisthesis has begun making it impossible to put weight on my left leg for a few minutes after sustained sitting or reclining. The sum total is truly annoying.

I wasn't expecting to feel disabled again only a year after very successful spinal stenosis surgery. I'm doing PT, will see a podiatrist and my physical therapist, next week, and so on and so forth, so there's a bit of hope for improvement. I'm very grateful for your concern.

Jimm_Scope

Hey @Grammyof2, I understand the concerns with a nursing home. Though there are other options than a nursing home. There's different tiers of assisted living, you can read about a few here: Moving into residential care | Disability charity Scope UK

Maybe one of the other versions could work out better for you if it ever comes to it?

I'm glad the medication helps keep it at bay at least. About the difficulty walking, do you have, or have you considered, a mobility scooter to help with getting out and about?

Grammyof2

Thank you for your thoughts. Yes, assisted living might be good, if and when I get to that point.

I'm pretty much OK for now, just slightly worried and coming up with various ideas for the future.

I get around well enough on foot for short distances, and use my trekking poles for longer walks (I try to walk 2 or 3 miles a day around my 55+ neighborhood).

If my left leg keeps getting worse, I'll switch to using the UpWalker I bought several years ago. Back then, I got relief now and then from rhizotomies and spinal injections but needed the UpWalker each time they wore off.

Meanwhile, I started being prescribed more Suboxone, which also helped.

Spinal stenosis surgery in 2021 was fabulous! So having my leg start giving out was a surprise.

I have all sorts of appointments lined up with medical folks. Though we're in the US, we have insurance similar to what people in civilized countries have, because my husband served in Vietnam (no copays, no bills for doctors or procedures), so no worries there.

We're just at a stage where we’re thinking into the future. Last night we affirmed again that if one of us gets enough dementia to need nursing home care, the other will assist their suicide.

But for now, we're fine. My husband finally agreed last night to help me declutter our little home (stuff accumulates!) so our disabled daughter and her autistic husband won't have to struggle too much when they inherit it. There's no other family to help us during our inevitable decline, so we're doing what we can while we can.

I appreciate the kindness here more than words can express.

Jimm_Scope

Ah, United States, I don't know much beyond what I learn from my American fiancé about the system in the USA. Sorry for linking UK information about care support, though I imagine something similar must exist in the USA. Good to hear you have good insurance thanks to your husbands serevice.

I didn't know that was called an Upwalker! I had to search it as I'd not heard the name, but I've seen them before. I also just want to say I'm honestly quite impressed by the 2-3 miles of walking a day. I think you're doing better than I am in terms of steps I get in the day! 😄

I know the kind of declutter you're talking about, I can be quite awful at keeping things I don't need. I'm always holding onto things "just incase". Have you found anything interesting during the decluttering? I always find things that I completely forgot I had.

Finally, no words are needed, this is what the community is for @Grammyof2. 😊

Grammyof2

I decluttered our 1830s farmhouse between 2016 and 2018, when we moved. We'd lived there 45 years, inheriting things from older family members until only we were left.

So I recycled many things, sold a lot, gave much to charity, mailed old items like my mother's 1926 high school yearbook to where they'd originated. Scanned millions of photos and our kids' art.

Then an auctioneer took a lot of furniture away in 2 tractor trailers (the $$ proceeds were very welcome!), and one little moving van hauled the rest to our new little home.

Nonetheless, we kept so much that our current home is overflowing! So there's work ahead sorting things out, but I'm skilled at that.

Best wishes to you with your own decluttering.

egister

https://forum.scope.org.uk/discussion/120842/my-body-jerks-60-times-a-minute-unless-i-take-medication

Is it possible that you have chronic poisoning with toxic or radioactive substances?

Grammyof2

It's conceivable, but something nice happened last week: I saw my new primary care nurse-practitioner for the second time. We were discussing my various ailments (just arthritis, a pacemaker and various other small problems associated with age).

One ailment is called spondylolisthesis—My vertebrae have got out of alignment, so various nerves get pinched. The surgeon who got rid of most of my spinal stenosis said, "You need several fusions, but you're so old [77] that being under anesthetic that long would kill you."

I told this NP my own theory of the jerking, which only my husband and I seem to take seriously… "I think it's related to my spondylolisthesis. I sense something happening in my lumbar spine a moment or two before the jerking starts, and it only happens when I've either been sitting or lying down for a while."

She said, "I think you're right."

I can't describe what relief and joy I felt. It's wonderful to be taken seriously. So yes, I agree that it's possible I might have chronic poisoning with toxic or radioactive substances. But I think spondylolisthesis is a more likely culprit, and I'm certain I'd get nowhere if I asked to be tested for substances I can't name, with no specific time or place when I'd have encountered those substances. I appreciate your concern.

egister

If you have chronic poisoning from toxic or radioactive substances, then your health should be taken care of by DoD, DOE, or other special hospitals.

egister

https://link.springer.com/article/10.1007/BF01323223
https://remm.hhs.gov/contamimage_top3.htm
https://remm.hhs.gov/contamimage_6.htm
https://remm.hhs.gov/nuclearmedequipmt.htm

Rosie_Scope

That sounds positive @Grammyof2. Best to investigate the most likely sources at first and discuss everything with your health professionals so they can support you through finding a way forward.

It always feels good to be listened to when you've been battling with something for so long. I hope this is the start of getting some answers and support for what you're going through 😊

Grammyof2

Thank you for your insightful comment, Rosie_Scope. It does indeed feel good to have been listened to by my new primary care. :)

egister, in regard to radiation contamination, I especially noticed that the explanations and tests that were suggested in the links pertain to "certain mass casualty radiation emergencies." I have absolutely never experienced either an individual nor a group radiation emergency. I have never been exposed to radiation apart from a few x-rays. Though I appreciate your concern, I do not wish to read more on that topic.