Do I go on meds or not? PLEASE HELP

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bahnov1978

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Hi Everybody,

I have to say this is really strange as I am somebody who normally doesn't let things get me down and always strive to give 100% in my personal life and profesiional life whatever life throws at me.

During my teens I was diagnosed with petit mal, and put on tegretol. Then I came off this when I was 17 and no more seizures until I was 27 after birth of my daughter, only for a couple of months. No meds.

Now at 32 they have returned with a vengeance, and it is frightening me as I have never experienced the symptons like this before. smells, tastes, dizziness, bright light really effecting my eyes, blurrred vision, feelin sick, loss of appetite, numbness in legs now for three weeks, but I dont feel I have had any black out, and even before I always felt I could talk right through the episodes that I had.

Biggest dileema for me is I am a lead teacher in the uk for early years and we are emigrating in ten weeks from UK to The Gambia where I am taking up a post ateaching post in August. I really dont want this to stop me doing as what We as a family want to do, very supportive family who are trying to understand but I dont think they can unless they have been thorugh it.

Lots of stress at moment with house sale, and everything. I just dont know waht to do. Docs have been supportive and siggested going back on tegretol, but i dont know if this is just going to be another short episode, or because of change of symptons whether they will get worst(this is what worries me the most). Cant see a neurologist until august either.

What do do? Sorry for long post, please help.
 
Hi bahnov1978, welcome to CWE!

I can understand your reluctance to go on meds if you don't absolutely need to, but you should definitely be concerned if your seizures seem to be getting worse (more frequent, longer, more intense). Uncontrolled seizures can progress over time, so it may be worth taking the Tegretol to be on the safe side, especially if you are unsure about the health care options in Gambia.

Do you have any sense at all of what your seizure triggers might be? You mention the stress of the house sale, not doubt a likely factor. If you keep a seizure diary you may be able to identify (and potentially avoid) your seizure triggers. Triggers can be physical, physiological and emotional stressors, things like fatigue, low blood sugar, dehydration, flashing lights, food sensitivities, hormones. A seizure diary can also be helpful in showing you if your seizures are progressing, or happening at particular times.

Are you around fluorescent lights a lot? Those are a trigger for many. If so, you could try wearing sunglasses to see if they help.

Best,
Nakamova
 
bahnov1978 said:
Now at 32 they have returned with a vengeance, and it is frightening me as I have never experienced the symptons like this before. smells, tastes, dizziness, bright light really effecting my eyes, blurrred vision, feelin sick, loss of appetite, numbness in legs now for three weeks, but I dont feel I have had any black out, and even before I always felt I could talk right through the episodes that I had.
Click to expand...

I totally understand your reluctance to go on medication, I think if you ask anybody in this forum nobody likes the idea of being on medication their whole lives the only good thing is that they can control the seizures.

Have you had one of those seizures in front of someone? I had them in my sleep often just before falling asleep I always felt like even though I was having an episode I was in complete control and could talk/move etc. Until I had one when my partner was awake, apparently I stare wide eyed and make lip smacking noises and don't respond to anything... My episodes also last longer than they do from my perspective it only feels like a matter of seconds to me, the fact is it's actually a lot longer.

A seizure diary is a great idea, you might be able to figure out what your triggers are. Seizures can also be triggered by diet and hormonal changes.
I hope it all works out for you, it might be worth going on medication just so you can get your seizures under control but, like I said I can totally understand your reluctance.
 
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Stress is a real trigger for me. If I'm stressed out about something I'm almost always going to have a seizure.

Even if you don't want to go back to taking the meds it may be helpful for you. You said that you went a good while with out having them so you may only need to be on the meds until things in your life calm down, then you may posibally beable to go off of them again.

Is there a reason that you don't want to start taking the meds again? You also said that you can't see the neurologist until August. I don't know the reason about that but is there any way you could get to see him sooner then you could talk it over and decide what might be the best thing to do.
 
Thank you so much for taking the time to reply, all advice completely welocmed. I am going to see if I can see the neurologist earlier to discuss option for meds but due to waiting lists in the uk not sure whether possible but I will try.
Definatley start keeping a more regualar diary of seizures.
Thank you
 
For my daughter the meds made it worse. The best course of action for Rebecca has been to be very very careful with nutrition, additives, sugar balance. She now has been 8 months seizure free. The nutritional imbalance was /is affecting her hormonal and insulin balance.
A very strict diet can also help with stress and anxiety.

Just wanting to throw out another approach.

Also how difficult would it be to get emergency meds where you will be living?
 
RobinN said:
For my daughter the meds made it worse. The best course of action for Rebecca has been to be very very careful with nutrition, additives, sugar balance. She now has been 8 months seizure free. The nutritional imbalance was /is affecting her hormonal and insulin balance.
A very strict diet can also help with stress and anxiety.

Just wanting to throw out another approach.

Also how difficult would it be to get emergency meds where you will be living?
Click to expand...

I'd just like to say that RobinN is right:agree:, changing your diet can make a huge difference. I've been on a gluten free, dairy free diet for a week. I haven't had many seizures since been medicated but I've had a few and at night while sleeping I was struggling to sleep undisturbed because I would make jerking movements in my sleep and wake myself up. Since being on a strict diet no more jerking movements, which means I can have a full night uninterrupted sleep and I feel overall a lot better (This is after only a week). If it's an option you want to consider check The Kitchen/Diets forum there is lots of advice there. And RobinN seems to be CWEs Epilepsy diet guru :) And she has some great advice as well.
 
Thanks guys,

This is something I have been thinking about too, does anyone know about modified atkins diet.
 
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