im new and i need help with some questions please

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

C

crystalconfused

New
Messages
2
Reaction score
0
Points
0
Hey everyone, I'm new here and I'm having some issues with my epilepsy. I guess I'll give a little background on myself before I start asking questions. I had my first seizure in April 2011 and since then I've had 15 more. I saw a neurologist and they thot that maybe my seizures were due to a medicine I was on but then I continued to have more when not being on the med I was on and then just recently I had 3 seizures in one day with the lasting one lasting 7 minutes my longest ever. I was taken to the ER and hospitalized for 5 days. They then diagnosed me with epilepsy after my EEG and CT scan. All my seizures are grand mal full out seizures. I am now on so many meds. I'm on tegretal 400 mg a day, cymbalta for fibromyalgia, klonopin 1 mg 3× a day, and ativan for rescue panic attacks. So now comes my questions. I had a seizure today this afternoon and now tonight I'm feeling like m going to have one...the love of my life said I'm talking slow and that my pupils are huge...she shined light in my eyes and my pupils went smaller but then got big again and were pulsating in between the two...is that normal? Am I possibly about to have a seizure?Could the combo of all these different meds that work on the brain be the problem? I'm just a mess...I feel like a zombie most of the time, I just don't know what's normal and what's not. Anybody have any comments on this? Thank u so much for any help.
 
Hi Crystalconfused.

Welcome to the wonderful world of seizure meds. I'm currently on 4 and 1 more I take for anexiety. Sorry I can't answer the question about the pupils. but I do walk around like a zombie most of the time. I sleep alot. It effected my job to the poit that I lost it last week. When I was younger I would tell my girl firend I was feeling seizurish. Its not a word but it was a feeling that I could not describe that told me that I would be having a seizure soon. and it usually happened right then or sometimes a couple of days later. You could also just be recovering from the seizure you had today. My sugestion is to keep a journal if you don't already. Where you keep track of what you were doing before the seizure to how you feel after. The pupils feeling like your going to seize agin is all important information for your neurologist. Hope this helps. If not i'm sure you will get other answers
 
Welcome to our club house! Someone will show you the secret handshake later. Sometimes the over active pupils are related to too much medication, or interaction. I would definately call the doctor on that one before my next appointment. Did you have a lot of seizure activity while you were in the hospital? It seems like so many times when we are in the hospital, nothing happens. I hope you are able to find the right combination of drugs to help control your seizures while still letting you live your life. It may take some time, but it will be worth it! Keep us informed :)
 
Hi:hello:

I too am on Clonazepam alone with Dilantin. My Neur.mwantedmme to take 1/2 tablet of 3mg every 6 hours, that didn't work, I tried every 5 hours, then every 4 hours this has given the best seizure control in my life. I' m 61

I too have days when I feel like I could have a seizure. It been when I was on an antobi.

Are you taking any Vit. if not. ask your De. to check your levels.
 
I have severe Obsessive Compulsive Disorder and was diagnosed with Independent Generalized Seizures (not tonic clonics though). I had a complex partial seizure while OCD-handwashing in front of a mirror once, and at the very onset of the seizure my pupils dilated. Not sure if that answers your question, but it's something to think about and perhaps mention to your neurologist. One suggestion I'd make is that you 'compare pupils'. How are yours in comparison to those of your significant other?
 
:-( crystal. I definitely agree that is something that should be checked. Pupils should get smaller when a bright light is shined in them and then dilate again when away from light source. The jumping in between? not sure on that.

elizzza811, my daughter also has OCD (12) and the day she had her first tonic/clonic, she had been having a really bad week with her worries. I hope there isn't tooo much of a correlation or we are in big trouble!
 
I know, really. But from what I've been reading, it seems there is a correlation between OCD and epilepsy, especially Temporal Lobe Epilepsy, unfortunately. I think the reason that not everyone with epilepsy has it is because certain neurons and circuits in specific parts of the brain need to be 'excited' and/or damaged first for OCD to occur. Obviously, I'm not feeling too lucky to have both.

http://ocd.about.com/od/otheranxietydisorders/a/Ocd-And-Epilepsy.htm
 
i can understand your feelings of unluckiness. My peanut has Turner syndrome, E, ADD and OCD/anxieties...ugh...i wonder if i can get her a brain transplant and the extra chromosomes she is missing?????
 
Thank you guys for all the responses and support. I will be seeing my neurologist earlier than normal to get it checked out. My partners pupils and our daughters both are bigger in the dark and then get smaller in the light.... not pulsate between the two like mine. So we will see what the neuro has to say about it. I'm just tired of feeling like a zombie or a hermit with all these different meds. I also started developing upper stomach pain yesterday and have had it since then. My blood levels have not been checked yet since being on the tegretal. I just hope its nothing to do with my liver because I already have some issues there, so I guess we shall see when I see the neurologist.
 
Welcome! You are in a good place with great folks at cwe. Thankfully you have someone in your life that can notice changes in your behavior. In the past and the beginning of my E journey, drs and ER's kept shoving meds at me. I highly suggest journaling and having your partner make notes when youre not able to.

I usually know when something is wrong but often its my husband who says, you have that look, or youre talking goofy, etc and he gets me to a safe place til it passes.

Different meds affect you different and can deplete your body; I have to take several vitamins daily and that helps.

Hope you feel better! :)
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom