Frustrated with seizures :(

[MM1988]

Hello everyone, I am new here and I hope I can get some advice/make friends with others who have seizures.

Nov 2010, I had my first seizure around 4am while sleeping. I was 22 years old. Next thing I knew I was in an ambulance. Did several tests, MRI, EEG, Scans, and all came back normal. My neurologist asked me if I wanted to be put on medication or not. I said not because I really believed I will never have seizures again. Months went by, and in May 2011, I had another one, again nocturnal. Then August 2011...and Nov 2011. I was getting more frustrated but tried to cure them naturally by taking vitamins and researching what to do. My seizures used to be strong but far apart, and now lately they are very VERY mild seizures but more often.

I guess I never really wanted to take medication because I read so many side effects and how some get worse seizures than what they originally were, etc and I was scared...still am.

Now, in 2012, I have had 8 seizures so far, about 2 months apart except recently had one in Nov and 2 so far in December (including today) again, all nocturnal.

Now I am really considering taking medication even though I read all those negative comments because I am also reading some positive things on it. I am currently 24 years old.

I have been getting very upset and frustrated and I know some have it worse, and worse things can happen but I guess I still haven't coped with the fact that I might have these for life. Also, my aunt (moms sister) has them since a little girl and great grandmother (moms grandma) had them - she is deceased.

I am sorry for this long post, and I know I sound so dumb probably and why the heck haven't I taken medicine?!

How do you cope with this, and also what are your medication stories? and I Guess anything else you want to say...

 

[Loopylil]

Welcome,
I don't read side affects but I know I do get some mild ones, you just need to weigh up wether it's worth trying the meds to be seizure free.
I have tried 5 or 6 nothing horrendous to report just mild side effects
Good luck and keep us posted on what you decide xx


Leanne xx
Always remember you are someone's reason to smile!!

 

[acpollard2010]

Mm1988 I have tried almost every aed there is out on the market and not to scare u but I have had some bad experiences but I have tried to go your route and almost died a few times so I decided along this journey to just somehow find a way to deal with the side effects they do suck but its better than being in the er or worse.and to your question about coping this website helps along with a good dr. And support system and faith in yourself that u can make it through the toughest times.

 

[jyearta]

Hi, I was diagnosed in 1971, when I was 18 years old, I had E. all my life. I'm 60 now.
The diagnoses of epilepsy just means you have had more than 2 seizures.

 

[MuayThaiFighter]

I started having issues at 16 and had my first convulsion around 2010. The seizures got worse for me and my docs currently have me off no meds. I can honestly say that some meds just aren't for everyone, but when you find one that gives you some seizures control. It is worth the negative side affects. They usually fade more and more with time. I wish you the best luck.

 

[Shawnna]

Please don't be afraid of medication - I know some of the stories here make it sound scary but your Epilepsy is unique to you. Also, how your body reacts to medication will also be unique to you.

My son takes four medications now and out of all the medications he's tried or been on, only two have caused side effects; Topamax made him lose his appetite and high dose lamictal was elevating his liver enzymes.

Working with a good neurologist who specializes in Epilepsy is critical and as long as you have good body self awareness, you can manage the side effects and make adjustments as needed.

Best wishes to you - always.

 

[kitty]

sweety I am 37 was diagnosed at 17 it took me many years to learn to look after myself and also just recently I relised that none of my neurologist of told me anything abt my JME I learnt more over my life and recenty on google after a isolated grand mal siezures, dont be afraid to ask questions research your type of epilepsy and take ur meds even if the sides effects sux then ask to try a new med, take it step at a time you will get there

 

[jyearta]

Do you keep a diary? listing everything possible triggers, sleep pattern, foods, any time you start a new. meds. over the counter, vitamins, herbs, along with presc.

Also forgot keep a note of seizures, length, even you are for sure it's a seizure!!!!!!

These will in you managing as much as you can and will also help Dr.

It will be OK.

 

[Cint]

I guess I never really wanted to take medication because I read so many side effects and how some get worse seizures than what they originally were, etc and I was scared...still am.

I never ever wanted to take any meds, either, but then I never imagined I would suffer a serious injury such as 1st and 2nd degree burns, either. That is what happened to me years ago before I was taking any meds for seizures. Actually, I had been to a dr. and he said I was hypoglycemic, instead of having CP's.

Now, in 2012, I have had 8 seizures so far, about 2 months apart except recently had one in Nov and 2 so far in December (including today) again, all nocturnal.

Now I am really considering taking medication even though I read all those negative comments because I am also reading some positive things on it. I am currently 24 years old.

Mine all started as simple partial, CP, 2-3 months apart before I finally went in to see a dr. But they weren't nocturnal.

I have been getting very upset and frustrated and I know some have it worse, and worse things can happen but I guess I still haven't coped with the fact that I might have these for life. Also, my aunt (moms sister) has them since a little girl and great grandmother (moms grandma) had them - she is deceased.

How do you cope with this, and also what are your medication stories?

Since your aunt and grandmother both had seizures, there is a chance it could run in the family.

I've tried 11 meds, had a LTL, a VNS and now trying my 12th medication and still have seizures. I've had to learn to take one day at a time.... that is all any of us can do......

 

[nicholas:)]

I take medication for my seizures - on the whole my seizures are under control. I do experience side effects, but I prefer to take the medication. Don't be afraid of medication. It is for you to determine your journey - what ever you decide, I wish you luck

 

[RanMan]

MM ~ Have you considered that you may have a form of "Sleep Apnea".
It is one of the triggers for nocturnal seizures, caused by a restriction of oxygen in the airway.
Maybe you should mention this to your Dr. and maybe have a sleep study done.

I suffered for 33 years before it was diagnosed, found this study VERY interesting.

Re :Nighttime seizures ~ Could be due to lack of oxygen to the brain while you sleep from sleep aids such as certain anti-epileptic drugs, sleeping pills, severe snoring or some sort of restriction to the airway.

I have been dx'd with Chronic Obstructive Sleep Apnea.
After my sleep disorders test the Dr. showed me the EEG from one night, I would stop breathing up to 50 times/hour and had 3 seizures and that I was waking up "post ictal" (moody and spaced out)
I purchased a CPAP machine (Constant Positive Air Pressure) which provides constant air pressure and have noticed a vast improvement.
No more snoring (the whole family sleeps better now), more energy when I wake up, better REM sleep, improved memory (less short term memory loss), and most of all ~ NO MORE NIGHT SEIZURES.

Randy
__________________
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

300mg-dilantin/day
270mg-pheonobarb/day
3,000mg-Mesasol/day (for Ulcerative Colitis)