Just feeling a little down....I guess

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HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 11/12/2004 11:36 AM (GMT -7)   
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
No one left behind!
1*


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 11/12/2004 1:31 PM (GMT -7)   
Hi Shaun. I have feel very down today. Maybe it is the rainey weather but I feel stuck sometimes. My Dr. visit yesterday just totally bugged me. I was at the gym today and worked out extra hard. I hope you feel better. It stinks to be sad. Things will get better :) Tracy

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 11/12/2004 2:21 PM (GMT -7)   
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!
 
 
Shaun
No one left behind!
1*


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 11/12/2004 3:20 PM (GMT -7)   
It sounds like you definately have alot going on right now. We are all here for you and hopefully as this weekend passes we will both feel happier. Sorry to hear about your Great Aunt.

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 11/12/2004 3:40 PM (GMT -7)   
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!)

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 11/12/2004 4:30 PM (GMT -7)   
Thank you all! I have tried to voice my concerns with my neuro. Yes, you're right. I have had better luck with a brick wall. They think they are gods and that we have no clue about what is best for us and the best course of action for our treatment. I'm half tempted to tell him to forget about VNS and the seizure center and I'll just deal with the side effects of my meds. (which are pretty rough right now too)
Shaun
No one left behind!
1*


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/12/2004 5:31 PM (GMT -7)   
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
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, thank God.


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 11/12/2004 5:37 PM (GMT -7)   
Ginny,
I'm currently on Neurontin 300mg's 3x daily. The side effects are primarily severe fatigue and tremors with a little loss of cooridination. Not near as bad as the Keppra, Dilantin, or Depakote. But, still pretty unmanagable. Hoping for VNS. My wife has apparently emailed Montel Williams and told him my story. We'll see if he responds. SHe figured he would be interested since he lives with a chronic illness and is a veterean as well. Who knows, I may be on national TV. LOL
Thanks for you prayers. I need all the help I can get.
Shaun
No one left behind!
1*
RLTW


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 11/13/2004 3:26 PM (GMT -7)   
sad   sad
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. nono
 
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

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 11/13/2004 11:02 PM (GMT -7)   

Hi HALO, eyes eyes

Re: going public with your story, maybe you should send an e-mail to some of the newspapers in your area or other investigative shows like 20/20 or 60 minutes and tell them your story and about the treatment you received from the hospital.

I can't beleive they threatened to take away your kids and charge you if you didn't behave.

Randy


try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 11/17/2004 9:56 AM (GMT -7)   
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

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 11/28/2004 8:05 AM (GMT -7)   
shout out to HALO how are you doing buddy? Ditch the cane yet? hope you and your wife had a nice thanksgiving!!! Tracy

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 11/28/2004 6:59 PM (GMT -7)   
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.
Shaun
No one left behind!
1*
RLTW


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 11/28/2004 8:51 PM (GMT -7)   
Oh gosh this sounds like a real rough time for you. Were all 7 seizures tc's. That must be so hard on the body. Sorry you are feeling so poor. Glad you made it onto the computer. That always helps me anyway. I hope you are feeling better soon and take care. Tracy

try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 11/29/2004 8:21 AM (GMT -7)   
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.

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 11/29/2004 9:33 AM (GMT -7)   
Have you have a VEEG mary. Your episodes all weekend sound very scary and I think that they really need to evaluate your situation and your meds that you are on. You do not sound like you are on the right combo with all of this seizing this weekend unless something is terribly bothering you and triggering something. I hope you feel well, get on the doctor to call you back. Make sure they do. Talk to you later Tracy

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 12/1/2004 6:27 PM (GMT -7)   
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
Shaun
No one left behind!
1*
RLTW


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 12/2/2004 3:09 PM (GMT -7)   
((((Shaun)))) so sorry you are having so many big ones! Hoping you can figure what is triggering them....

Has anything around you changed? Furnace been cleaned before starting this year< Sleeping enough, food changes? Stress brings them on and you have stress just having the seizures, such a vicious circle!

Hoping you will find something that helps slow them down again!!

Hang in there....

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 12/3/2004 9:57 AM (GMT -7)   
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
Shaun
No one left behind!
1*
RLTW


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 1/7/2005 9:40 AM (GMT -7)   

Shaun (Halo)

How's the paralysis on your left side?

Randy


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 9/12/2006 5:46 AM (GMT -7)   
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
Had My Brain surgery, and I was so scared, but the doctors made me feel good and and I did. They kidded with me before the surgery and before I knew it I was in recovery Thanks for helping me. Mine is on the  left temporal lobe. They say it is deep it my brain.

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