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I am unsure on recent events, seizures Epileptic vacant, or FND seizures, or something else?

Kersjones profile image
4 Replies

The last week I have been getting a strange sensation in the whole of my body. It is hard to talk but I can sometimes speak, I feel like I am on a roller coster and my stomach is in knots, I don't feel sick. Almost spaced out and not in this planet. No one can really tell that I am having this moment, as I have had them at work and at home. It lasts 3-5 minutes. I have had as many as 4 a day. The sessions are getting worse and stronger.

I have just made it off my epilepsy tablets(carbonmazapine). I got similar sensations when I was diagnosed with epilepsy, before I had a toni cronic seizure, and these sensation.

I am scared it is the start of more seizures and I have to go on to more medication (kapra). Also is it FND or is my Epilepsy is back?

I don't want to scare others but I am nervous of having a Epileptic seizures again.

Any adverse welcomed. Many Thanks Kerrie

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Kersjones
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Lady4 profile image
Lady4

Hi, if you are experiencing being "spaced out" they could be dissociative seizures, which are FND.

Did you have an MRI confirmation for Epilepsy? As I was wondering why you have withdrawn from your meds (unless you were having side effects).

Kersjones profile image
Kersjones in reply toLady4

I was allergic to the medication after taking it for over 10 years. It has taken 2 years to come off the medication. It made my skin hyper sensitive to light and other allergies including water and dairy and the conclusion was it was the medication was the case.

thinkin profile image
thinkin

Hi,

You can get both types of seizures together. About 20% of FND suffers have another neurological condition. If you have stomach issues then have them investigated as there's a link between the gut and the brain. Allergies can trigger FND's - that's what got me. I only get FND seizures with vaccines and not all the time. Lucky dip!

Check for thyroid antibodies too. They can give neurological issues as they not only attack the thyroid gland, but b12 and glutamine synthase needed to clear glutamate in the cells as part of the glutamate, glutamine, GABA cycle. People with FND have too much glutamate in the effected cells. Glutamate builds up towards the end of the day, if you do too much exercise, concentrate for long periods, histamine released due to allergy, injury or infection is a cholinergic which causes the release of glutamate in the brain.

Also get your vitamin levels checked. You can't get all the vitamins you need through diet alone and certainly not if there's something wrong with your gut. They have been adding sulphites at a level of 10ppm to food since 1979 - thanks Maggie Thatcher. It doesn't sound a lot, but it only takes 1ppm to kill off every vitamin in food in about 6-8hours with the exception of vitamin C. This is why the food industry goes on about vitamin C content - they've killed off all the rest, but preserved the vitamin C. They make it sound healthy but are actually using it as a preservative and calling it an antioxidant - because they are all supposed to be good for you, right? They use vitamin C in bread for it's sulphite preservative which helps break down gluten in bread. It sounds healthy, but it's killed off all those other vitamins they put in by the time you've got it off the self in the shops.

You have to check the pharmacology of your medication too. Some have ingredients that attack vitamins in order for them to work. Sorry, you are going to have to do a bit of digging. You may have to start on ordinary websites and then check out what they say on google scholar. Some people with FND seizures find a low histamine diet really makes a world of difference, but I'm not sure it will be of use for epilepsy.

With FND's you have to find a "you" shaped answer. What can be transformative in some can be other's worse nightmares. Maybe ask your consultant about trans auricular vagal nerve stimulation if medication is not the answer for you. There are external devices now.

Hope this helps, but have probably confused you. xx

Kersjones profile image
Kersjones

Thank you for your help. This is not something I thought about. I have strange allergys but hard to live with ( UV light and dairy). I will talk to my consultants and see what they say.

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