Extremely frustrated

[Orge]

Hi what medication are people on who have many spasm seizers and jerking seizers. This is getting to the point that I'm extremely exhausted.

[HenriettaPoultryfoot]

Hi Ogre!

I have body jerks when I am relaxed or trying to go to sleep. Not when moving around. I have spasms in my legs and feet too. No seizures. I do not take any medicine for any symptoms of FND except eye drops for FND related Blepharospasm (eyes).

I hope someone has insight for you.

HenriettaPoultryfoot 🐓

[Orge in reply to HenriettaPoultryfoot]

Thnxs very much x

[Bumblebee004]

Hi, I have muscle spasms/jerks that started pretty much immediately after the covid vaccine. I dont loose consciousness so not seizures as such, but they are definitely 'attacks' triggered by weird things like flashing lights, loud noises and vibrations, pain, ect. Over the last year I have used chlorphenamine (an over the counter antihistamine) and procyclidine (another anticholinergic) to good effect HOWEVER I have recently been diagnosed with FND- a diagnosis I am not on board with tbh, and my neurologist has told me not to take anything anymore as they cant possibly be helping me 🤣 So, we'll see what happens now. I'm thinking A+E might be seeing a lot more of me.I am obviously not advising you try the above mentioned drugs but just answering your question ❤ Hope you find some relief xx

[Orge in reply to Bumblebee004]

Thnxs luv and don't worry a&e are well used to me lol x

[Lining]

I have spams and jerks and they are very bad. I am on Methocarbamol for them. But as I had them for 24yrs and was only told I have FND last year and told that there is nothing else they can give me as it’s advanced. Try asking your GP what they can do x

[Orge in reply to Lining]

He's luv I will I'm seeing them today so I'll mention all that and hope for the best x

[MONIREN]

I don't have seizures, but did have full body jerks at odd times. Ones I found hardest were ones in public and just about to go to sleep. My gp put me on Levodopa, it's a Parkinsons medication. Both FND and Parkinsons are low on dopamine, which this medication helps with. I had success with it, stopped the jerks, helped with my walking, not so unbalanced and helped with my slow speech. I do notice of an evening when it's wearing off, I am a bit worse. It's only a short fix, it does stop working. I'm seeing a new neurologist in couple of weeks, see what her take is on it, hopefully she knows about FND. Someone else on here had Levodopa and after they stopped it, still had relief from symptoms. Hope this helps. Take care. Moni

[Orge in reply to MONIREN]

Yes luv thnxs that's what's wrong we're o. The border between Ms and parksons and they just fob us off I stead of using the same medication as wee have the same symptoms gs x

[maeveblue]

I do not experience any type of seizures. I do however experience spasming in leg muscles, bladder and bowel spasms. My feet will also lock in distorted painful positions. I have been prescribed Baclofen which has proven helpful for me. Baclofen is commonly prescribed for spasticity following spinal cord injuries and for people with MS. Before this medication nothing was helping.

[Orge in reply to maeveblue]

Yes luv my feet go the same gs my husband bees astonished with the turns my feet will do and christ I feel ur pain but thnxs for the insight I'll look into it x

[Myfnd]

I have FND with Dissociative seizures and tremors. The only relief I’ve found are benzos, or high dose of CBD oil. I get mine from extract labs in the USA and use the extra strength blend twice a day and it stops my seizures after a few consistent days of taking it - a god send. Before anybody asks I’m not affiliated with the company Id just like to share what works in this crazy minefield that we all live in

Color photo of CBD oil of choice

[Orge in reply to Myfnd]

Great luv I'll look into that as I need something strong as they are getting worse this F. N. D business is taking its toll if it even is this I'm not sure definitely having doubts