Twitching

[Gypsy_67]

G'day folks. I was diagnosed with FND a week ago and I've been reading about people having seizures. I don't have seizures, I just twitch from the time I wake up until the time I go to sleep. When I say twitch I I've heard butted my knee when I'm sitting down. I'm on baclofen and valium 3 time's a day now, which helps. The, I'm going to call them spasms, are now mostly confined to my head, neck and shoulders, although my arm's join in when I have a bad day. Does anyone else have this kind of thing or does everybody have seizures?

[Tora1]

I get like ticks and twitches and I did have spasms at night from my hip to my ankle. I was given Endep and that really helps with this. I was able to sleep more than a few hours. I have also found a lot of relief on the aip diet. Although not diagnosed as an autoimmune, I have really found relief in it!

[Shimmyaway]

As with you, I am hoping that the twitches and jerks do not move on to seizures, and after 2 1/2 years I am still seizure free... though the twitches/jerks have changed to different parts of my body, and sometimes are accompanied by loud vocalisations. Fingers crossed for you ..this condition does not seem to work very logically!

[cgarff]

Hello Gypsy, I am so sorry you are having these problems. Mine started out with voice issues, then evolved into twitching/spasms in my head, neck, arms as well, unfortunately they did move into my face, torso, and down throughout my entire body which lead to me having pnes, and what many doctors denied for many years because they couldn't do an EEG and see any issues during the day, I was having seizures as well.

My issue was that I would say 8 times out of 10 they started when I went to bed so testing in the day didn't work. It took many years and many different docs for one to do a 3 day V EEG to find I was having both.

I am now coming up on 16 years this December since this all came about, I thought I was doing so much better, but in the last few months movements and vocal issues are increasing again.

This disorder totally sucks! I hope that this doesn't happen to you. Don't give up, keep fighting, keep trying to find the right neuro if they aren't helping. Also get into therapy, and again keep trying to find the best one, don't settle. You are worth fighting for.

I wish you all the best!

[Newdx2023]

Yes. I have twitches, tics, tremors, spasms separately or after a seizure. Also, have balance issues , speech slur or a loss of speech, foggy brain, word finding difficulty and memory issues. I was diagnosed August 2023 and find each day can vary from none to minimal symptoms to a mixture of several. I see this a challenge now to see how strong I can be on the toughest of days and how appreciative I am of the days with less symptoms. When I was first diagnosed - I could not have imagined how life changing this would be as I thought surely this can be "cured". I had to retire early, make financial adjustments, have not returned to driving , am on several meds (none before) and limit other activities outside and even tasks in the home. I am not trying to be a "downer" by saying all this , but counseling (Psychologist) and therapy (PT, OT, ST), along with a Neurologist who all understand FND, NES, along with family support and faith have truly been my saving grace and made me stronger than I ever knew I could be !

[Gypsy_67 in reply to Newdx2023]

That's a brilliant reply. I had my 38 year old daughter, her useless boyfriend and their baby here for 14 month's and when the twitching started he treated me like I was faking it. He ignored me for 8 months, they were staying in my home rent and utility free, and when I finally spoke to him about it they were gone the next day. I'm sure that the environment exasperated my symptoms. Having said that I'm still twitching, but I'm a lot happier within myself. Not sure why I told you that. I'm having a pretty ordinary day and I'm in bed, so apologies.

[GreenCottage]

Yes, I get twitches and although these have died down in recent weeks I get muscle spasms and cramps when I sit and lie down. I find deep breathing helps to calm things down somewhat.

[Gypsy_67 in reply to GreenCottage]

I do box breathing when it's bad because the more I stress the worse it gets.

[AslanCat]

Hi. Sorry to hear that you're going through this. Your symptoms sound very similar to what I experienced. I firmly believe that not every diagnosis of FND is accurate. It's a nice one to throw out there when you don't know what something is. When this happened to me, I was also on a new medication for anxiety (SNRI) that had a rare side effect of causing dystonia and other movement disorders (I had been diagnosed with mild cervical dystonia only 4 months prior). Most drug induced movement disorders occur after 4 weeks of use, and I had been on this medication for exactly 4 weeks when all hell broke loose. Despite a neurologist diagnosing FND, my family doctor, other specialists, and my neuropsycologist at the time all felt that it was caused by the SNRI I was prescribed. I was weaned off that medication, and am now restricted from taking any medication in that category. I had tremors all down the right side of my body, intense muscle spasms and cramps in my neck and shoulders, muscle cramps in my calfs and other areas. I looked liked someone who had parkinson's. I constantly felt like there was some energy vibrating inside of me. The first several weeks I also felt hyper all the time mentally and felt very irritable and angry. It was like my body and mind were both affected. I was on Baclofen, Clonazepam, and Benadryl. When the pain in my neck became unbearable, even with the Baclofen, I started getting botox injections. This whole thing last 2 years. As time went by things very slowly faded. I was on disability the entire time. I did several rehab programs for balance, coordination, and strength.

Look into getting Botox for your neck. And.....if you were on some new anti-anxiety and anti-depression meds before this occurred, talk to your doctor asap.

Good luck!! I hope the best for you!

[Gypsy_67 in reply to AslanCat]

Thanks for the reply. I'll speak to my doctor about the Sertraline I'm on. My neurologist spoke to his colleague about Botox, but he didn't think it would be helpful, unfortunately.

[MONIREN]

I get what I call ticks and jerks, I tried a Parkinsons med for a while, after a couple of months I could stop the meds and they stayed away. Otherwise not on meds for FND. But now coming back, mainly when I'm tired or stressed. I have walking issues, slow speech, memory problems, forget words, losing use of my hands and jerks. Started in 2017, took 3 neurologists and all the usual tests to get diagnosed. Hope you find a way to cope. Take care. Moni

[Gypsy_67 in reply to MONIREN]

I'm just starting to get problems with speech. I have to think about each word, consequently I'm taking slower. It gets worse when I'm tired, which is most of the time. I have walking issue's too, so I have a walker now. Twice I've been asked if I'm my sister's Mum. The second time it made me cry. I'm losing my fine motor skills too. I am engaging with an exercise physiologist, an occupational therapist and a speech therapist. I'm hoping they can at least half the deterioration and hopefully improve some.

[MONIREN]

Walker helps people see I'm not drunk, just struggling to walk straight. Neurologist said I could still drive, but I stopped , haven't driven this year. I have until April to decide whether my licence is worth fighting for. Every year I have to jump through hoops to keep it. I'm my husband's carer, he gets quite sick. But we face life with humour and support each other. One day at a time. Take care. Moni

[Gypsy_67 in reply to MONIREN]

The walker does help me walk in a straight line. Otherwise I spend a lot of time going sideways. My son says path's are for boring people, I should go my own way. I love that kid. When I say kid, he's 37.

[MONIREN]

Just read your bio, hate the way neurologists ignore you as a person, one told me I was depressed. Went off my antidepressants, haven't taken them since. I will not be put in a box just because they can't be bothered doing research. Last neurologist was kind but refused to see me again, he is old and too busy. Not much choice in the country. Love what you're son said, good man!! Take care. Moni

[Gypsy_67 in reply to MONIREN]

I'm on meds for OCD and anxiety. I've been in volunteer counselling since I was 25, I'm about to turn 57. I've worked long and hard to get over the kid stuff and the ex husband stuff etc and the only thing this jerk says is "go see a psychiatrist". What do you think I've been doing for the last 35 years mate?!?! He just didn't know what to do and he's not used to that, so he made it my fault and problem. Fortunately I have my sis who was the worker's compensation/injury management boss for Woolies in SA before she came to look after me. She's all over this. The fact that her best mate is now my NDIS case worker doesn't hurt either. They're working together to make sure I get the bl**dy thing in the first place and that it will make my life easier. I need a mobility scooter. Otherwise when my sis goes away for a few days I'm stuck at home. Finger's crossed they cough up for one of those. Thanks for the chat. I'm going to have a nap now, but I'd like to catch up with you another time. Have a good one.