Whats wrong with me?? Can't take it anymore :(

[Jun]

Hi everyone,

Im sorry, I dont know anyone on here, but would really appreciate any kind of support or comments.

I am someone who has brain damage on the left side of the brain, and as a result, have paralysis on the right side of my body. The first seizure I ever experienced was back in grade 9 (first year of high school), and have had to deal with it since them (currently 28). Unlike many other people out there, I would consider my seizures to be on the mild side in terms of frequency and severity. Usually once or twice or max three times a year, although during my university days, I would have them occur about once a year, probably due to stress.

Ive been out of university for about 4 years now, and during this time, Ive had only about two or three seizures all together, and the ones I did have were probably due to known triggers like jet lag, lack of sleep, etc.

Ever since April of this year though, things have really gone south. Ive had seizures happen during the day, and I think some during the night.
My mood, energy level, and overall well being have been way down compared to my usual self of before. Im eating well, sleeping well, and exercising enough, but I just feel out of it. Some days seem normal but many days seem abnormal. If im resting, I feel fine, but if im thinking even just a little bit, its like someones putting a bullet to my head. I go to work, I come home, and after quickly eating, all I want to do is close the blinds, and get in bed and rest.

And its really during these abnormal times, which have become more frequent, that I worry that a seizure might come on. Maybe you would call them aura's or something. Im not too farmilar with that. No flashing lights or anything. I just feel this strange sensation come on me.

Im taking my meds as usual. I know im not one to be complaining since my seizures are mild, but these weeks, I just feel like death is around the corner. Not suicide, but just the feeling that Im on my last breath and my body is going to give way any day now, if that makes any sense. I can't take this anymore.

I just want to be like any other person. Not having to worry whether im going to have a seizure or head ache or migrane etc etc.

How does everyone get up each day and not worry about if their going to have a seizure? Thats pretty much been on my mind for the past few months.

Any comments would be lovely!

Thank you

 

[SlimBlue]

Welcome Jun

Noone on here is ever going to say your type is somehow tame- it's all relative, there'll always be someone else that has it worse, and in a way reading about the struggles other people have helps us deal with our own

Dealing with paralysis must be a real PITA and I wonder how I would cope with that- probably not as well as you..

You actually sound like you're pretty clued up about daily living with E- doesn't matter how frequent they are.

First thing to do would be to tell your doc/neuro about these changes. E can be very transitory- frequency and types of seizures can change, and also the body can get tolerant to types/dosages of meds.

This 'depression' and need to just curl up and go to bed you've been feeling can be caused by the meds- and is well known to come hand in hand with E anyway. That wired feeling as well is very common, and many of us can predict a day or two in advance we'll be having a seizure..

It's a stressfull condition to have anyway, and you have other effects to deal with as well. There are types of seizure that can cause the 'impending doom' feeling but I would definately advise chatting with your doc about it, it's possible your meds may need a tweak.

As for how we deal with it, well this will sound trite- but we come here and share our struggles, you will soon see no doubt how absolutely awesome this forum is! The great people on here- amazing support, sage advice and just, well people who know, you know?

Get these changes checked out- keep a journal of them to take to the doc, and just take it one day at a time

 

[Jun]

Thanks for the reply and support!

Its been just over a week since I had my last seizure.
Headache's are still there, which is quite annoying, and any kind of stimulus around me (bright lights, noise, thinking ) are all contributing to a worse headache
I went to the ER yesterday to get it checked out. They monitored my blood pressure, and took my blood to get scanned to see if everything in there is okay. Everything turned out to be okay. BP is normal, and all the blood test results came back normal.

And then they sent me home......I still have this nagging headache which doesnt seem to want to go away!

As for my neurologist...I dont really have much hope in him. All I can expect from him is an increase in my meds, and no real explanation about my symptoms. If no seizures, then no increase in meds, if seizures are occuring more frequently, then increase meds....thats all. No "you're having these bad headaches because __________" Maybe its time to find a new neuro....*sigh*

Ive been trying to look up if taking tylenol or other pain reliever is a good thing during these times or whether it just makes things worse in the long run. Can anyone share their experience on this one?

Thank you!

 

[Cint]

Maybe it is time to find a different neurologist if he/she didn't do anything about your migraines. I also get migraines and my neuro has prescribed a medication specifically for migraines. Also OTC Excedrin for migraines helps me out. And sometimes the AED's can/do cause migraines, so your dr. needs to explore the cause/solution.

 

[gigi]

coping

Hi Jun:
Sorry to hear of your frustration, and epilepsy is just that, FRUSTRATING! I have had it for over 45 years. My life has most assuredly been affected by trying to tame the beast (my brain). My seizures have been from few and far between, to almost taking my life. Maybe I am just more resigned, used to it or I just don't give a crap as much after so many years. Coming out of the closet, so to speak has made it more tolerable, even though people still act weird about E. Acceptance goes a long ways in living with this disorder. Being angry is part of the process of getting to a peaceful acceptance. My emotions surrounding E have run the gammet, and I try to count my blessings inspite of it.

I understand the fear factor, it is an all consuming feeling to know our brains could betray us at any moment. Looking at it from a proactive position will serve you better, and to have the best quality of life despite E. The paralysis you live with has to be depressing for you and that sounds like what you are dealing with also. CWE has helped me over the years-so keep coming back!