Post stroke seizures

I had my stroke Aug 24, that evening my wife noticed my leg was spasming, it is now thought I had a seizure, I spent 4 months in hospital, with it never being mentioned, in June I had a mild short seizure, after having several busy days and overdoing things, I was conscious and clear headed straight after, and have had no other effects. It took 4 months to see a neurologist, who recommended I start on Levitiracetam, which had immediate side effects and after a week I was losing my sense of balance, so I stopped taking it, now they want me to try Lamotrigine, which they say has fewer side effects but might cause insomnia, which is my idea of hell, as I sleep badly at night now, and usually need a kip mid afternoon,
So does one seizure usually lead to others, I’ve now reduced my social life, I’m walking and exercising more, drinking more fluids and get enough sleep to function,

Was I just unlucky with Levetiracetam or am I possibly sensitive to drugs that work on the brain this way

Given I had nearly a year seizure free I now feel like I am being treated as a full blown epileptic,
Should I try and speak to my stroke consultant ? Or just try the Lamotrigine

Thanks ,

Jim

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Hi Jim,

This is a difficult one. I have no experience of seizure medication but as with all medication there can be side effects. You maynor may not get them so it may be worth trying a different medication. I think if it was me I would be asking a few more questions aa if you have been seizure free for a year maybe you don’t need anything as it has settled itself. You may want to consider if not taking the meds will affect whether you can drive or not…this may not be an issue for you.

There is probably no way of knowing whether you will have another seizure or not although if you know your triggers uou can help by avoiding them.

Hopefully someone with experience of seizures will be along shortly with some better advice.

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@caer_luel You must speak with someone for guidance. You have been through the mill and back. Good luck :four_leaf_clover:

Hello Jim,

For me, the clue is in the above sentence. That said, I am not medically trained and nor do I profess to be an expert.

I do speak from personal experience and it seems to me you might not need any medication. I don’t know the full background and why the neurologist recommended medication. You had waited 4 months to see the neurologist.
Question: Did you have any seizures during the 4 months you waited?
Answer: It seems the answer is no unless I missed something in your post. In that case why do you need the medication?

I shall let you think this through.

Here’s what happened to my Mum. Some time after her stroke, she started to have seizures. It was in the early days of our post stroke journey and so were green behind the ears when it comes to carer experience and stroke survival. So we ended up in A&E and anti-seizure medication was prescribed. We did not like the look of it and did not like the possible side effects.

We thought about what had happened and that might have led to the seizures. Mum’s sodium level (electrolyte needed for brain activity) had fallen through the floor as a result of the side effect of BP lowering medication that she was on.

By good fortune, the consultant actually told us to stop taking the BP lowering meds but did prescribe the anti-seizure meds.

We didn’t take them after the first day and in fact we did have seizures two or three times more after this but we managed the situation - made Mum safe by putting on her side etc.

Our belief was the seizures were caused by the low sodium and so we started monitoring this (blood tests through GP) and we stabilised it back to the normal range. Since then there have been no more seizures.

That’s our experience and maybe we have been lucky to have sorted it out this way, but I would suggest you might want to think about this and try it out.

You can either trust and go with the neurologist or you can listen to your body and see how you can help it. You can speak with your GP and see if you can be tested for electrolyte imbalance which may cause seizures, but going back to the beginning, I note you had your seizure after after having several busy days and overdoing things - this with your stroke brain is why you had the seizure. Your brain was overworked and you were under stress. So by nor overworking the brain and trying to manage your stress, you may also manage or avoid having seizures.

It is only my observation of what happened with Mum and there is no guarantee your situation is an]y way similar, but you might want to explore the likely cause and how you can manage before you commit to medication.

Everything you have read is my experience, and I am not suggesting it will work for you or that you should do this, but you might want to think about it.

In this camp, we are avoiding medicines as much as reasonably possible, but it is a personal choice.

Wish you all the best and stress free life :slight_smile:

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Hi Jim - I don’t know if my experience is the same as yours, since you equated your leg spasm as a seizure–and maybe it is. Anyway, here’s my experience. After my stroke about 7 years ago, I had spasms in my left leg. (My left side had been paralysed by the stroke, and with therapy I got function back. However, I continued to have my left leg seize up about once a minute after I lay down to go to sleep at night. It drove me crazy as it kept me awake. The doctors made little of it and said they didn’t know if it would go away. Some nurses at the hospital (I was there 3 weeks) told me to try CBD oil drops under the tongue or i gummies(without the THC in it). You can research CBD on the net, dosing, etc. The doctors couldn’t prescribe it since it is not FDA approved (I’m in the USA). I found that 20 to 40 mg CBD worked for me to stop the spasms so I could get to sleep. Gradually over many many months the spasms came less often and I used CBD less nights. Now, I rarely need it. Maybe once every few months if I overdo or am very tired. It was a godsend for me. I had no side effects, and it helped me sleep. They do recommend not driving if taken during the day, and of course to check with your doctors first. Both my GP and cardiologist were fine with it. :brown_heart: Jeanne

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Hi Jim,

sorry to hear about your experience and wishing you well for a full recovery. In terms of epilepsy have you had a hospital overnight assessment to confirm this , as just before being off of work was working on this with a client and he is on a list for this to confirm epilepsy.

I think perhaps both branches of nuero in terms of stroke and epilepsy could help you as if you need epilepsy medication and assume stroke medication in blood thinners and statins at least the combination has to work for you and joint working with each knowing would help you, also maybe speak with your GP and have referrals done to try and ensure this happens. I have got a better sleep routine or sleep hygiene but mines has always been just on the right side of poor. Just now I have blackout blinds and curtains both closed to keep out as much light and sound, room is cool and dark and no devices in it for both temptation and light, it may be out there and a bit weird but have invested in meditation to my benefit .

Good luck with your recovery and hope you get answers and much needed sleep.

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Thanks but I’m on Verapamil for my permanent atrial fibrillation, which interacts with CBD,

Jim

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