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molly-pop

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Hi

I am new to this site so firstly 'hello'!

I am 23 and was diagnosed with epilepsy about 2/3 years ago now, I have simple partial seizures to the front temporal lobe (i think). My symptoms are not as severe as many of you from what i have been reading - you are all very brave!
I am awake throughout my seizures, I get the typical 'aura' where i know its going to happen, the rising sensation from stomach to head, the de-ja-vu, vivid memory or type of hullucination, weak bladder, out of body 'floaty' feeling, staring into space, unaware of surroundings yet being able to function... these were happening up to 10-15x a day in clusters throughout month.

I was diagnosed and put on Carbamazepine 200mg morning and 300mg at night.
This worked brilliantly and my seizures stopped straight away, I got my driving licence back and for the past 2-3 years i have been fine...

However...this is where i seek help...
About 2 months ago i noticed that i was getting slight senations that resembled the auras that i used to get. i ignored it but it quickly developed - i did not have a 'seizure' but the aura with the rising sensation was back - it would rise up as if it was trying to develop but was getting pushed back down (dont know how else to describe it!).

I told my epilepsy nurse and she increased my medication, this didn't do anything infact they appeared to be getting worse (but still not developing into a seizure) i was getting a rush of emotion with them aswell, i would just burst into tears for no reason. Anyway, I had a blood test to check my levels were still ok of the drug and they were so 2 weeks ago i increased it again to 600 at night and 400 in the morning.
Everything seemed to be fine untill today i had 5 'sensations' again.

I have emailed my nurse and am waiting to hear back from her, but i am starting to worry at why after years of being fine on such a low dose it is starting all over again.
Has my body become immune to the drug? if so why is this and what does it mean?
Or is it possible that my epilespy is developing/worsening?

So sorry to ramble on but i just wanted to make my background clear so that hopefully somebody can give me sum advice!

thank you in advance :)
 
Hi, Mollypop!

Welcome! I'm glad you found us here in the forum. And don't think your seizures "aren't bad." They are all bad, and feel incredibly awful to whomever is having them.

Even auras are simple partial seizures. Your intense emotion (crying) is a type of simple partial. It sounds like things are getting a little out of control again. Sometimes there is a trigger or a reason seizures get worse, sometimes there is no definable reason whatsoever. Can you think of anything that changed in your life lately? Amount of sleep? Diet? Amount you drink? Hormonal changes?

Have you thought about going in to see your doctor again? Do you see a neurologist? Is he/she an epi? (A seizure specialist) It is important to jump all over this before you have a large number of seizures, because over a long period of time it can make permanent changes to your brain and actually make them harder to control.
 
Thank you for your quick response Endless, its nice to hear support from people who understand.
I cant really think of any major changes - i moved house, but this wasnt a stressfull thing i was really happy about it...
Im due to go back to my GP in 2 weeks and i am in contact with my epilepsy nurse via email. I see a neurologist for a yearly check up, but i hope he may want to see me sooner when the nurse fills him in with my development. I don't know if he is an epileptologist - i have never actually heard of this before!

p.s - my memory is getting really really bad and i am worried that it is a) either to do with my medication or b) the epilepsy - its getting to the point where i almost don't want to talk to people as sometimes i cant even finish a sentence!
does this sound familiar? or am i just being paranoid?!

thank you again
 
Yes, memory issues can be a result of seizures. It can happen from the meds, too. Reclusiveness can also be a result of your seizures. Depression and paranoia is, too.

I wouldn't wait for your neurologist to call you for an appointment - call and make one with him right away. Sometimes you have to be assertive in order to get the right care. Like I said, it might be a good idea to be all over this until you get it figured out and fixed.
 
I have bad memory loss too, and not to scare you but sometimes after a sez I might loose the memorys that happened sooner.

When I was first diagnosed, about 6 years ago, I would have really bad seizures. After each one I would forget what happened that day and several days before.

Now my seizures aren't as bad, but the memory of things will start fading away after a few months, some stuff stays but alot doesn't. I laugh because when all the tv repeats come on in the summer it's like watching a new season for me.

I would defently get an appt with your neuro, and not his nurse. You need to get these things checked out just to be sure what's going on.
 
laughing... me, too! I never have a shortage of tv shows to watch or books to read, because in a few months i don't remember them.
 
I agree with Endless, it appears that this medication is not right for you, and you need to figure this out quickly. If anything ask to lower it to the previous amount, because you were not haveing the increased side effects. Then you can take the time to get in for a complete exam. I do hope that on increase and decrease that they titrate you on a very slow amount. Jumping from 200 > 400 isn't safe, nor is the other way around.
 
Hello and thank you everyone for your advice! I have made an appointment with the neurologist but its not untill September... the nurse wants me to go for yet another blood test in a couple of weeks to test my levels again and she is sending me some information about my memory issues
 
September?! That's longer than you may want to wait. Maybe you can call back and get one sooner. Tell them it's urgent. I don't know the health system in the UK, but here in the U.S. the neurologist saves some appointments that are earlier for the people that need them. In any case, the wait isn't longer than a month for existing patients. For urgent needs, same day.

P.S. Did you tell her you are having seizures after years of none, and how many?
 
It is definitely possible to develop a tolerance for your med over time, so it does seem that the Carabamazepine isn't working for you, and increasing the dosage won't help. I hope you can get info about trying different meds sooner rather than later. Also -- for any tapering on or off meds, I would recommend going in very tiny increments, over as long a period as is possible. The timing that docs and drug makers recommend is based on an average, as well as the half-life of the med based on blood levels. But my experience (and those of others) is that the brain and body is sensitive to much smaller doses and changes, and that going slowly can help the body adjust better at each increment (which in turn can minimize side effects).
 
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