Just feeling a little down....I guess

Hi, I'm just feeling a bit down.  Things don't look like they are heading in the direction I would like them to with my new neuro.  I guess more than anything else, I'm worried and scared. Oh well, that's the way these things go I guess.

Shaun

Thanks Tracy!  I guess it's just the weekend and everything that's going on.  Veteran's Day is always a hard weekend for me.  On top of that, everything that's going on with my neuro, and my Great Aunt's funeral is today.  Just a rough weekend.  Thank you so very much for your support and kindness!

 

I am so sorry to hear about your Great Aunt. I am sure that is not helping how you feel about things in general. I am sorry the new doctors are not moving in the direction you wanted! Hang in there!

I think weekends are often the pits! Have you been able to voice these concerns to the neuro? Worth trying, but I know it can be like talking to a brick wall. (actually I think I have had better luck with the wall sometimes!)

HI Halo,

I've just been reading about your situation and what happened to you. Holy smokes, how are you dealing with all of it? ARe you off of all your AED's right now? You mentioned the side affects are really hard to manage. What are your symptoms when you're on you meds? I hope I'm not making you repeat all this if it's on another thread! I looked but couldn't find anything. I think Randy's idea of taking it to the media is brilliant. Nothing like a public scare to get an institution to admit wrong doing. I hope your paralysis is going away too. You're in my prayers!

 

Ginny

 

HALO,

You're right, your side affects from your meds. is not as bad as if you were on dilantin and/or pheonobarb. (as I am)

I get profuse sweating, memory loss, tired all the time, slurred speach, REALLY POOR CO-ORDINATION, poor gait, slower response time, paranoia, stigma in the eyes, confusion, erectile disfunction just to name a few.

This has caused serious social problems and effected my employment.

You should decide what you would rather deal with. Side affects vs VNS surgery.

Randy

I just returned form my neurologist appt. I was in the hospital for Pancrealitis caused by the Depakote I was on.They took me off of that and Tegratal. Now he has put me on Phenobarbital. I also take Keppra,Dilantin, and Klonopin. I have seizures on an average of three to four a week.Last week I had about ten.I am scheduled to have a MRA next week to check for an anurisim. I guess I just needed some input from somebody that has been there. I am really affraid to start a new med.even though I know it is an old seizure med.I have never been on it. thanks for listening.
Mary

Thanksgiving was ok I guess.  I had to spend it in bed (Dr's orders).  I have had 7 seizures in the last 5 days.  The last 2 resulting in concussions.  I have been experiencing vertigo from the concussions.  That is why I was on bed rest.  Luckily, my neuro said they would go away within 24 hours.  So, no cane and no vertigo.  Thankfully.  Other than that, we are doing fine.

I've been on phenobarbitol 10 days now.I feel terrible on it. I also take keppra ,dilantin,and klonopin.Boy that phenobarbitlal is the worst for me .I can't talk right ,I walk like I'm drunk. I forget more then ever now .After taking it 2 times I decided not to take it. My friend talked me out of it. So I have been taking it. I had seizure s Thrursday,Friday, and Sunday. It does not seem to be helping my seizures. I called my NEURO. talked to the nurse. Friday I had so many seizures I was taken to the hospital. Why have all those side effects if it isn't even slowing down my seizures. The doctor will be calling me back. I will say where I go all the DR's are great.

Tracy, yes all 7 seizures were tc's. Man, am I a hurting puppy right now. I don't know why they are becoming so frequent. Thankfully, the vertigo has stopped now. That was one of the scariest feelings I have ever had. Including being in combat. I'd take combat over vertigo any day of the week and twice on sunday! Thanks for you concern and kind words. You always put a smile on my face. Thanks everyone for your support! I don't know what I'd do without this forum

Well, somehow I got off schedule with my meds for about a week. Also, I have not been able to sleep much lately. I'm hoping that is what is causing all of the seizures. I have been on schedule for about a week now. Had another seizure tuesday morning. My neuro raised my dosage that afternoon. Now, I am taking 300mg's in the morning, and afternoon. I was taking 300mg's at night. Now I am taking 600mg's at night. Haven't had another seizure since then. Crossing my fingers. The only down side is that i'm feeling rather out of it and slightly off balance. But, that's just a side effect of the meds. We're trying to reduce the amount of stress in the house. It's been hard lately. My wife is feeling more and more stress from having to take care of the 3 boys, the house, and me 24/7. We only know one family here. we moved here about a year ago and because of my epilepsy...we haven't been able to socialize. The people we do know had a party about 4 months ago. I had a seizure at the party, and we are just now hearing back from them last week. We haven't heard much from them since then. What we did hear from them was pettiness and fear. They didn't really mention my seizure...but they used the situation and the fact that we need so much help due to my seizures, frequent neuro appts, and fairly frequent trips to the ER, and my not being able to work since June. The problem is....she and my wife have been friends for about 20 years. So, neither my wife or I want for her to just throw their friendship away over stupid stuff. But, some of what was said hurt. She said I was "limiting my wife's potential". So, I guess long story short....We don't have anyone here we can depend on. Which means my wife doesn't get a break and *I* don't get a break either. We both need our alone time and we just can't have it right now. I can't be left alone. Which means my wife can't leave me at home with the kids while she goes out and de-stresses. I can't drive...of course. I've pretty much made up my mind that I'll never drive again. Even once I'm seizure free. Don't want to have a reoccurance while I'm driving suddenly.

WOW!! I only meant to leave a short reply. I guess I just needed to vent a bit. Didn't mean to write a short novel. lol

I been on about ever drug out there and they all effected me in someway. Everyone had effects on my body. Mosty the made me so tried and I slept most all the time. Toamax made me num in my arms and legs, that was very scary. So I told my doctor and he lowered my dosage. I hope everything works out for you. A freind

Ken