Running low on will

[sandi]

Hello I have visited your forum before , finally decided that I needed to talk to someone about whether I have E and what I can do about it -So many questions-
Background 10 yrs ago I had an auto accident -I was pretty shook up and almost shocky but made it home driving a car that was barely able to move.
I don't have any memory of Where the Accident Occurred other than a general
idea .I thought I was just stiff and sore opting to go to chiro instead.The first event was 4 days and I was 1 block from home and became lost-couldn't go anywhere parked the car and while disoriented found my way home and had my teenage son help get the car back. After having a Grandmal and being taken to the hospital -I ended up in a neurologist office I was placed on Depakote although
that was absolutely awful- I became very depressed, paranoid unable to function. I had to move -emergency family issue- And somehow along the line-became convinced That If I just were to work harder ,mind over ,matter, I could beat it on my own.I stopped seeing any Dr's and as they all said I was just depressed and had panic and anxiety disorder because all the EEG's came back negative.My memory has been so bad at times on meds that I don't know what day it is and time passes quickly.Too date I continue to have problems have tried many meds Can't seem to find any that work- Yet I never got an Epilepsy DX. I gotten some relief for a period of time then I sink back again.I'm now headed down again and with No health insurance and a new Dr (old guy retired) who doesn't want to help at all but refer to a shrink which I also have no $$ for. I don't know who to turn to for a moral support other than to those who know the most what I'm feeling.

[neilB]

Hi Sandi,

Welcome and you've found the right place. Sounds like you have what I have, seizures from Traumatic Brain Injury (TBI). EEG's will sometimes come back negative as they may just not find anything at the time of the test. I've gone through a few meds over the past 7 years and now I'm on Keppra and Carbamezapine (generic Tegretol). Hang in there my friend!

[epileric]

Sorry to hear about all that you've been through.

I know that technically someone isn't supposed to be classified as "epileptic" until they've had at least 2 seizures. I would confront a doctor about getting off of your meds & seeing if there really is a need for you to take them.

Do understand that people can develop seizures while on ant-epileptic drugs so I would recommend if you do stop to taper off slowly.

I know there are more people here with experiences similar to yours. Someone who recently joined (can't remember who) was diagnosed as epileptic before having 2 seizures.

Make yourself at home & feel free to check the place out. You might even enjoy the padded room (I almost typed rubber room lol) where you can vent your stresses.

[sandi]

Depakote
Paxil + Xanax
Lexapro + Xanax
Cymbalta
Lyrica, Ritalin ,Prozac
Now Mirapex and Xanax Best combo so far but still not good
I've been off meds with no difference weaning is horrible as well.
New
DR wants me to go somewhere else- I pay cash as I only have 10,000 deductible insurance and only through the end of the month

[Endless]

Hi, Sandy,

Gosh, you've been through so much. TBI is really hard. I was in an accident about 10 years ago, recieved an injury to the left side of my head, and couldn't think straight for over a year. I tried beating it on my own, too, but now wish I had gotten some resources to help. I don't think my TBI is at the root of my seizures now. But who knows?

You are definitely in the right place here. The people in here know lots, and have helped me a lot.

I agree with what has been written about a dx of epilepsy based on only one seizure. Maybe a second opinion would be a good idea. If you go off your seizure meds, please be sure to taper off very slowly. It's true that going cold turkey can cause another seizure.

Hang in there. <<<<<<<<big hug>>>>>>>>>

[Nakamova]

Hi Sandi --

Are you having more seizures than in the past? Are they escalating? If so, it's a good idea to try to find a seizure med to control them. I noticed that other than Depakote, the other meds you listed aren't necessarily specifically for seizures. If you can manage to see a neurologist, it's worth asking but epilepsy drugs like Lamictal or Neurontin. No guarantees that they would do the trick, but they may be more successful than the other meds you've tried so far. They are also both prescribed off-label for bipolar, so if that's an issue for you, they can potentially help there as well.

Best,
Nakamova

[sandi]

Memory so sucks sometimes-I don't know whether I had a spell or not.
There is normally a lot of visual issues with me.And it's not always immediate
sometimes there is a time lag. I have had grand mals in the past -so I know what they are like.Just taking an antidepressant will have one.The simple and partials are almost more annoying,visual alterations sometimes just things moving can set me off.sometimes I can get on top of it by taking the Xanax up front sometimes not.
Lyrica is an add on seizure med,Itwas being considered for first line. But it was pretty toxic to me.I stayed pretty drugged though the brain was quiet for a while.Since It made me crazy and I basically had one heck of a scare- I've weaned off and am just on the minimal and tolerating things which is frustrating
I can say one thing for sure they seem to cluster at the worst opportune time.
Making me feel in a fog for days-
Don't know if that means Neurontin is out as well- But I have to find a better bartender first (Dr) I not sure I will survive another cocktail like the last.

[sandi]

I have looked around and feel a little better now, I'm certainly not the worse off ,and considering I'm not on more meds I should be happy-,
Darn Depression -I've had a lot of clusters this weekend I have a RX for topamax but I couldn't bring myself to try it.
I'm going to try and not worry so much- chances are I would be just as bad on meds right now.Thanks for encouragement.
I don't understand WHY they can't make better meds!
In my case the brain doesn't use ,absorb meds properly- So minimal doses is sometimes all I can tolerate- I haven't been able to get to theraputic doses is 10 yrs on anything.

[Nakamova]

I can see why you would be reluctant to start the Topomax -- by many accounts, it doesn't exactly make the brain happy...

[sandi]

The only reason I think about it is I was so reactive bad saturday -I could have jumped out of the moving car going down the interstate at 70 MPH!
And my family is after me to FLY--Thinking that would be better than a car-
Well at least i couldn't jump out.

Dopomaxx may have placed me enough in a coma- to not feel anything.I was afraid to try the topomax -It's been in my shelf since January! I just look at the bottle- I have a few others up their as well.

When that vertigo type feeling comes I do anything to stop it!
It is really more of a visual alteration where things don't line up and are differing in size and depth and the brain gets stuck on stupid.
Not a true vertigo.