So I'm new to this, its taken a lot of guts, and I'm not really sure what to write. But basically I suffer from JME. However recently i have been suffering from Tonic Clonic seizures, followed by my usual seizure which is continuous, uncontrollable limb jerks that can last for about 15 mins. Admittedly i have only had two Tonic Clonic seizures and i'd love it to stay that way. But i wish i knew why they happened. Several times i have been lucky enough to go a year seizure free, several times i started learning to drive but then i had to stop again because i'd have a seizure. I recently was a year seizure free and very excited to start learning again but thats when i had my second Tonic Clonic seizure. It just feels like its one step forward and then a giant step back. Since my second one i've been absolutely petrified to the point where its completely knocked my confidence, i've been panic attacks that have been getting worse and I'm tired. ALL THE TIME. Its as if no sleep is enough sleep and my head hurts, it feels so tense all the time. I struggle to get out of the house at times. My legs go like jelly, like if i stand up they won't hold my body and I'm weak and just shake and the only place i feel safe is my bed. I went out with my husband for a meal and i have no idea what brought it on but it felt like my head was frozen and i couldn't move it and so i went into complete panic. I have spoken to the neurologist and they thinks its due to my seizures and knocking my confidence. But i just want to know if anyone else feels like this and how do they deal with it?
Thank you in advance.
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Laurenliz
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I’ve had the same problems. I finally got the courage to start driving and had to stop after a cluster of SE and TC seizures so I now have 301 days until I can drive again. I’ve also gotten to the point where I’m terrified to go out anywhere in case I have a seizure because the last one apparently started while I was on my way home. I also suffer from some serious mental problems, including anxiety, and have started on CBT to try help but as of now I don’t have an opinion on if it’s helping. I contacted an epilepsy charity who I was told could help fund the embrace seizure alert watch since it’s so expensive and I’m not working but no one replied to me.
The sleep thing is horrible. I was having near constant headaches and insomnia so bad that I was getting less than an hour sleep every night, I did some research and found that the medication I was on for epilepsy (first lamotragine then keppra) was a very strong possible culprit. I finally got my doctors to agree and I’ve been changed to Epilim chrono this week so hopefully I’ll see changes but it’s only been 4 days so far so I’m still increasing the new med while reducing the old. I hope you get sorted, ask if you can be referred for CBT for anxiety. I think it’s quite common for epileptics to have this anxiety.
I do feel for you, especially, as I suspect you are a young lady who is planning a life ahead and, currently, seeing setbacks. Do take heart, there is a way through!
You don’t mention the drugs you are taking atm, or indeed your age, ( not important I guess, but I remember at 31 being devastated when my journey began with issues here, I’m 67 now and still juggling drugs after 3 brain ops to remove 3 blood clots which left me with epilepsy, the rest....no matter, but I now have epilepsy that seems to need regular tweaking of drugs, but my neurologist is brilliant!)
However, to you! Just to say, I remember being scared to leave the house, checking I had bracelet for info, phone on me....don’t go far.......stress.....not good....even now, a journey has to be handled carefully, we all have a ‘stress’ indicator. Your neurologist was carefully saying, possibly, that whilst your seizures are the cause, stress must be avoided too. Treat your brain like an egg in a hurricane! Protect!! You, and only you, with wonderful support from your husband will definitely, definitely, slowly get you back on the road!! I have not been able to now for 10 years but that’s due to my brain issues, you, you can get back in the driving seat, in more ways than one!
The tiredness you mention I imagine is due to drugs? Or possibly due to other issues, again here badger the neurologist! That’s their job!
You have shown confidence in speaking out! Well done, now continue, little steps, make a list....whatever works for you.....but also, just in my own experience, I do remember being so scared to go out in the early weeks, months.....time passes and......it gets better!! Make it. Good luck!
Im on Sodium valporate & Keppra. Im only on both because they are trying to get me off of the sodium valproate as i can't start a family while I'm on it. I also have an underactive thyroid which can definitely effect my sleep and my moods but i have recently had my levels tested and everything is as it should be so i can rule that out. Apparently its normal to feel so tired when I'm feeling the way i am but it just doesn't help. Don't get me wrong i do have my good days but i hate feeling so trapped and i hate the way its making those around me feel. Stress is definitely a massive factor, all i ever do is worry, even if i can't do anything about it, its just me, thats who i am. But sometimes i get so tense inside my head, its just like theres a lot of noise going on in it and i just want it all to go away. Trying to explain how i feel is the hardest, which I'm guessing you can relate to from what you have said. Im 25 and when my husbands on the late shifts i can't cope and have to stay with my parents, but it shouldn't be that way. The doctors have suggested i try and go for walks, even if its just 10 minutes a day but thats when my legs go like jelly. I used to enjoy going for runs and sometimes i really feel like i want to get back to it because it just feels like a good stress relief, but the thought of it really frightens me. Feeling so unsafe on my own is horrible.
It’s good to hear your thyroid levels are as they should be! I was wondering how many drugs you have tried for the seizures as, purely in my own case but I believe it’s not unusual, it has taken quite some time to arrive at the right ‘ cocktail!’ If you see what I mean! Now, again, we’re all different, but when I tried Keppra I found I experienced the same jelly leg like symptoms you have mentioned, as well as extreme tiredness, Keppra was not for me. I now take Tegretol, Topiramate and Clobazam with a Midazalam syringe to take orally if seizure lasts longer than 5 minutes......I did have a seizure in 2010 that lasted over an hour and my neurologist said I’m lucky to still be here but they don’t want to risk me having another long one. Luckily, the subsequent ones have been shorter due to medication.
So, again, to you, particularly with a potential baby in mind! Have you tried various drugs? I know I had my third child whilst taking tegretol, but that was before the bad seizures started, he was born in ‘84....but I’d still had seizures due to surgery to remove blood clots from my brain, all ok but scar tissue results in epilepsy....
So, keep talking to your neurologist, ask questions, don’t feel bad about losing confidence atm, you’re going to gain it back! Slow steps! You’ve got a good support system, even though at times you don’t want that, you want to do your own thing, that’s natural too. Check out those drugs.
Hi I understand what you are going through, it’s tough & tiring- the spiral.
One thing I find that really helps me is yoga 🧘♀️ & body Balance which I now love, as I focus on doing that to my best then I walk home. Find it helps with my sleep. I do other fitness classes but yoga is my favourite. It’s just a thought 💭
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