Jolts ...

[englishmumof2]

So I get jolts ... Prof Edwards says it's a bit like when someone has Tourette's! I get it when trying to fall asleep and occasionally when driving. Driving I'm fine as dvla and prof Edwards say I'm ok'. But I am beyond exhausted now each time I try to sleep the jolts keep going and so now I've had enough. Ive tried amyltriptalyn and it made me so groggy I couldn't function. What meds do you all take , what works ? Waiting on another MRI to check it's still just FND. I'm so tired and I ache and can't sleep 😭

[angelite]

Hi there, I'm sorry you are having so much trouble with this :

en.wikipedia.org/wiki/Myocl...

I get regular spasms in r. leg/arm both day and night but they are triggered by movement or certain positions. I am not on any meds to date. The website offers suggestions for meds but does emphasise that finding the cause is best to target meds. Do let us know how you get on. Kind regards, Angela x

[englishmumof2 in reply to angelite]

Thanks Angela! Prof Edwards said it's the FND it's like Tourette's you can't control it, it just happens! I said is it like seizures and he said no! Seizures can be controlled by specific meds..... I was hoping (like you do) there was a magic cure!! I'm seeing gp this week to see if they can help then prof Edwards in august ! Xx

[Rosered175]

Hi englishmumof2. By the way, I love that name! I understand the jolts. I also get jolts, especially at night. It can also be accompanied by "lightning in my head/field of vision". Thus far, I have received no explanation. It does disrupt my sleep. Sometimes I have these jolts in my sleep that may or may not wake me up. It is horrible, especially when you are so tired.

I don't have any recommendations for medication. I'm currently attempting to survive without medications.

The only hope I can give is that at some point your body becomes so exhausted that you pass out even with the jolts. I wish there was a way to stop it. I wish I could help you more. You are not alone.

Take care,

Andrea

[Hidden]

englishmumof2.

I have missed having chats with you last few days. We have life in common.

So, I have myoclonic jerks which are sudden uncontrolled movements of limbs. Also have paroxysmal dyskinesia which are very sudden movements that can involve all parts. Also have a form of dystonia called torticollis which is very violent movements of neck pulling head forward and down.

It is a real circus when it all gets going at once. Family rushes to put me in center of room away from harm.

Nothing is worse than the electric like jolts that come in sleep. Can shoot you straight up or make you curl up in fetal position.

All of this is absolutely exhausting and insane. Developed all of this over years. Now chronic. Does happen sporadically but without any warning and regardless of what you are doing.

My only defense is meds. My combo of anti seizure, gabapentin and tizanidine act to help suppress in spite of what your professor says.

Did learn at FND conference that treatment regimes do not include any therapy for these type sudden movements.

I was shocked. What do we do? I do not know. Just adds to the challenge I guess.

Not meant to add worry. But wanted you to know that part of movement disorder syndromes.

My sincere best to you.

Take care and stay in touch.

Dan / Seattle

[englishmumof2 in reply to Hidden]

Hey Dan , good talking to you too.. I feel awful today... might go to ER.A &E in U.K. .. just not right in my head... I think it's this long term lack of sleep 😭

[Hidden]

englishmumof2

We with you. Sending you strength of my spirit today. May they help you in any way that they can. Rest and know you will overcome.

Dan / Seattle

[englishmumof2 in reply to Hidden]

Cheers Dan.. didn't get to a and e had to walk dog, tidy house, look after kids.... but I did rest for about an hr , didn't sleep due to jolts but hey ho.... left arm is heavy , headache comes and goes ... just argh... but at least I didn't waste Drs time when they could treat some one more in need. Cooking second dinner of the night... waiting on washing to finish.... sometimes I'd like to just go... disappear... sleep for a month then come back.... thing is a can't

guarantee I'd come back.... I find the house chaotic which doesn't help 😭. C'est la vie I'm still here 😆. Hope you had a better day and sending you my strength too 🐣

[Hidden in reply to englishmumof2]

My englishmumof2.

No one ever more in need than you. Your house day so reminds me of mine. Starting dinner soon. Wash in process. And, the never ending dishes.... All that after leaving house with a shine before leaving last week? What did my son-in-law do with his time?

Sleep gets more elusive the further you go in this. Really want you to look into meds for jolts. 2000mg day keppra helps me at least stay out of hours long episodes. My docs agree and I do not feel side effects though you might. Please ask again to see if they will consider letting you try something. Do not like the pattern you are in right now.

I felt the strength you sent come up here into rainy pacific northwest. Family will appreciate it too when hot meal ready when they come in door.

I want you to continue to be here every day. You are a big reason that we all continue to get by each day.

Let the sun rise again.

Dan / Seattle