Uncontrollable shaking

This sounds very scary! This has never happened to me, but I was wondering if it has happened while you were off any of these meds before? For example, has it only happened while on dapsone?

It almost sounds like a seizure but that is just a guess. I have no experience with seizures.

When I was on the Bart/Persisters Protocol ala Dr J I had a scary experience - I had taken the meds for the week and after my last dosage Friday night - I started to feel unwell... it continued to worsen - I was shaking which turned into jerking movements (arms) plus my head hurt to touch - nerve pain upper back through the roof.
My heart rate was very high and same with my temperature.

My husband called in sick for the next days shift and was prepared to take me to the ER.

By mid day it was maybe 5-10% better and evening little better.
It took another full day to feel functional and not scared.

I see you are on dapsone - I was on it too - along with Rifabutin and Ceftin (or maybe mino?)

Scarey stuff... the jerking

Oh yeah I forgot I'm on rifampin too. I don't think my heart rate was up. My body just locked up tight. Unable to move. Started out as shaking. I've had a lot of twitching and jerking this was something much different.

I don't think it was panic attack but I don't know? I have experienced panic/anxiety from the Bartonella I suppose.

From start to finish was just a few minutes. Went form ok to instantly shaking then stiffened up super super tight. Arms, legs, back, abdomen everything tight. Then as quickly as it came it was over.

I am being "watched" for a CSF leak. When I bend over sometimes a clear water like liquid will run out of my nose. Sometime at night it runs out of my ear. I have a lot of the symptoms dizziness, headaches, relief when lying down, ears ringing, numb arms but they could also be from Lyme and co. So far Dr has only given me a specimen cup to catch a sample in but I never have it on me when it happens. That's the Dr who did my sinus surgery. I wish he would just do the test. I may contact my family Dr tomorrow and see what he thinks. Really don't want to spend any unnecessary money on a visit that doesn't help. Especially if it's just another Lyme and Co symptom that can't be helped anyway.

Maybe Intracranial hypertension. Have you had brain mri?

I did some research on it awhile back because my brain mri’s both note it as incidental finding (empty sella, low cerebral tonsils). If I remember right I did find where infections can cause it.

Also, Cranio cervical instability is linked with intacranial hypertension. It can cause a host of neuro issues. This is a great blog about it if you’re up for reading. She’s got a huge following in cfs/me community.

https://medium.com/@jenbrea/path-to-diagnosis-part-i-an-empty-sella-9b984a5ac6ca

I think since you are feeling like you are being electrocuted and it's painful that it's not anxiety/panic related. This seems like something you shouldn't ignore or pass off.

Some meds can aggravate or increase spinal fluid pressure. Tetracyclines can do it and if I remember right some anti-parasite meds like albendazole.

I associate those symptoms with the beginning of lyme ...or "mid-lyme".............not with someone whose been here quite some time.

Thats when I had that- at night. My body structure semi-permanently changed (two decades) from those years too. Body tightened up all tingly at night, it twisted my spine too. Thought is was MS, nope. My nervous and endo system was jolted out of normal from the infection.

I have slowly reversed the scoliosis after Drs said it cant be done (some so useless its pathetic).

So I must ask.....any chance you infected again more recently?

I have had tremors before but not to that severity. That sounds like a seizure. The CSF leak thing sounds very serious. I would press for proper testing/treatment. So sorry you’re having such scary symptoms.

The worst shaking/tremors I ever had was when I was on Cholestyramine for mold detox. The night I had uncontrollable shaking was the night I took my last dose. I couldn’t handle the CSM. It moved too many toxins too fast. I started shaking like I had chills but it wouldn’t stop. I thought I was going to need my mom to lay on top of me to stop the shaking. Finally, I turned a portable heater on and that stopped the shakes. I thought I was going into shock.

Post Edited (WalkingbyFaith) : 6/16/2020 8:00:17 PM (GMT-6)

Just got back from getting my MRI. It was a contrast MRI and gadolinium was one of the ingredients. Not crazy about that (Chuck Norris's wife's story) but felt like I should have it with everything going on so I did.

My plan is to drink extra water, skip my meds for tonight, and take an extra gi/liver detox pill. Amy other suggestions to clear the gadolinium?

Im having shaking episodes too but different than yours. I have to get an brain MRI next week and I requested no contrast. Some doctors will give you a hard time and others won't. But they can still see mostly what they need to even without it, especially if they are looking for structural changes. Luckily my doctor totally agreed and ordered it without it.

Maybe bath with bentonite clay? Messy but that’s what I did to lower uranium levels.

WV Mike said...
MRI normal so idk? More money down the drain.

Take it as good news - and worth it to find out there’s nothing showing up on your brain.

rub mag oil all over let dry then rinse in a whole bag epsom salts bath - see if it subsides? . royal jelly was money well spent to help nerves regrow