Why I tried to go off my Keppra and what happenned.

[Eve]

Hi. I have simple partial nocturnal seizures. It took 10 years for them to diagnosed me with this before that I was diagnosed with everything form fibromyalgia to depression. I started off with Tegretol them Cabatrol and then Topomax and then Zonegran and now Ive been on Keppra a few years.:e:

I have also been on Zoloft off and on but finally went off cause I didn't like the side effects I had IBS and since I went off Zoloft the Irritable bowel syndrome disappeared.

Well about 5 days ago I decided to go off my keppra. The first few days I felt great and I even thought my hair was behaving better. I increased my B vitamins and Magnesium and took some Stress Herbal Vitamins.onder:

Then last night I awoke at 2 00 am and felt a sudden sense of dread like something really terrible was going to happen and then I felt my heart start to race like crazy and I got dizzy and the left side of my body felt weird almost numb like. I was really scared so I went into the bathroom and took my former nightly dosage of 1000 Keppra that I had not taken in 5 days. About an hour later I started to feel better but I was still very nervous and AFRAID to go back to sleep, Luckily I had some Xanax from 2 years ago so I took one and at about 6 am I went to sleep and I awoke at 2 00 in the afternoon feeling really groggy and I just had 2 cups of coffee.

Yeah I know I probably shouldn't have gone off my Keppra but I was tired of the side effects. And then the other problem I have is due to job layoff I am now on COBRA it is due to run out in a year or less. The company that is giving the COBRA has no sympathy for my problem they told me to either pay it monthly or they will cancel it if its a day late. It is difficult coming up with the funds.:brain:

The cobra is costing me $1000 a month and it includes drug coverage. I tried to apply for an alternative health insurance. I was declined by 3 health ins companies for having epilepsy and because a had a bleeding episode in the brain 10 years ago ............that has not been a problem since. I had an high tech MRI and the bleeding stopped on its own so nothing further needed to be done they never even knew what caused it and this all happened 10 years ago in fact my Doctors are not worried about it. But nether the less I was declined for health insurance because of this incident that happened 10 years ago . So now I am on COBRA it is due to run out in a year or less.

That is part of the reason I tried to go off the Keppra because if I Have to reapply for health insurance i wanted to say I take No drugs and I don't have epilepsy.:crying:

Of course I am hoping for a job opportunity but it is not looking good. But I haven't given up.:e:

 

[nicholas:)]

it takes time for meds to leave the system... day one you may feel fine but as the drug leaves the system problems will present themselves. always best to see GP and come off meds in a controlled way

 

[Eve]

Yes I was off Keppra for 5days I felt great even my moods improved and I even thought my hair looked better.that was until I had that weird seizure last nite. I almost believed for the first 5 days that maybe I didn't even have simple partials nocturnal seizures anymore or maybe I was improperly diagnosed.:e:

 

[momof3boys]

I take 3000mgs a day off Keppra XR and my seizures start off the same way. I had my first VEEG in March of this year, and I was taken off all medications (Keppra XR and Carbatrol ER) completely. The first day was fine, but I started having simple partial seizures the second day. My seizures start out the same way. I have left temporal lobe epilepsy, and I get the same dreadful feeling before they start. My left side goes numb, starting with needle like feelings in my hand and foot, that work its way up my entire left side of my body, then comes the sadness, fearful feeling, my heart begins to race, I get a sick stomach feeling, and my body stiffens. I begin to jerk on my right side of my body. The seizures usually last for a minute or two. But I know where youre coming from when you describe how they feel.

Im sorry youre having a hard time dealing with geting insurance. When I was a teenager, like around the age of 19 or so... my parents had to get me Cobra, or else I had to go to college in order to be covered through their insurance. I know it was alot of money. I hope something good comes about and you can find the insurance coverage you need and its affordable for you.

 

[Nakamova]

I know it's always tempting to see if you can go off meds and be seizure-free too. But you have to be very careful when you do that -- you can't stop cold turkey, otherwise that in itself can cause seizures. The brain and the body want stability, so going on and off and on again can be risky.

I hope you feel okay now. When you feel up to it, check out the thread below. It lists all sorts of helpful resources, including ones that can help with medication costs (scroll down for those).

http://www.coping-with-epilepsy.com/forums/f23/resources-11497/

 

[Eve]

Thanks for all your help/ I don't know what I would do without this forum, nobody ever seems to understand my problems. When I was a young Mom I would be telling other Young Moms about my seizures and they would give me a spooky look.:huh:

Kristin glad you understand that Dread feeling it's just awful it is as though something really bad is about to happen and it awakens me to that feeling. After the whole episode is over I am always afraid to go back to sleep.

In Sept I went to a major college football game and it was packed . I sat in between these 2 ladies and everyone was pushing it was the nastiest crowd ever. At one point I got pushed hard and was afraid I had been seriously injured. But I was able to walk 2 miles after the game so I figured I was ok. When I got back to the apt I was a little sore and I went to bed. In the middle of the night I was awakened to a sense of dread and then I got a real sick feeling in my stomach it was scary. The sick feeling in my stomach went away and then I had bad pain in my joints on the one side of my body and my heart was racing. I remember my one foot ,,,the toes turned NUMB and I got really scared. I had taken my seizure meds that night it must have been the pushing and rudeness of the crowd that brought it on I dunno????? No more live football games for me.
I hate those episodes I am ALWAYS AFRAID to go back to sleep. op:

Thanks Nakamo I am going to check out those resources you linked. They look like they may contain useful information. I am feeling a little better. I was really dizzy this afternoon. I know I shouldn't have gone off the meds but for some crazy reason I thought maybe I didn't really have a seizure disorder. And for the first 4 and half days I felt Great. Unfortunately it was short lived. I just had some pumpkin spiced latte from Starbucks (no I don't work there.) and I am feeling less woozy.

 

[crazychick]

hi eve, i get seizures in my sleep or so im told, i have no recognition of what happens, i only know i have had 1 when i wake up next morning to find my tounge bruised and headache like a hangover. i suffer with all the side affects of keppra to. my neuroligist thinks its not the meds making my hair fall out its some other problem so i have to see a dermotoligist. like you im sometimes scared to go sleep. i take b vitamins daily buty they dont seem to be helping me, i have tried biotin to which dont seem to be working either. so i feel your pain. my neuroligist i dont think he knows what hes doing, as he hasnt actually diagnosed me with epilepsy and he hasnt told e what type of seizures i am having, but im 70 % sure its roughly the same time every month. i hope u feel better soon, you can talk with me anytym. ill try and help you the best i can, i want to help if i can.

 

[Eve]

:shake: Thanks for your concern. Your Doc needs to give you a sleep EEG that's what I think. I told you it took 10 years to figure out what the heck was wrong with me. A regular EEG did NOT diagnose my problem. I had to leave the state go to a State University Medical School Hospital and I had to Stay up all night no caffeine...that was a bitch.I had to go off ALL MEDS. And then about 10 00 am they put me on this hard table with wires all over and something on my head metal like ( it was not painful) and told me to go to sleep. As tired as I was I couldn't sleep for 2 hrs I was just so uncomfortable and nervous. But it was all worth it cause they figured it out immediately after the test and put me on Tegretol ASAP and then eventually switched me over to to Cabatrol. .:e:

I know I shouldn't have gone off the Keppra last week but for some reason I thought I was "cured". Maybe I been watching too many Halloween movies I don't know. But I felt great for 4 and a half days and Saturday was the 1st time in a few years i was able to wrap my hair up and use one clip and a little spray and it stayed like that all day.

I see the Doc soon and I know he s going to flip when I tell him I was off the Keppra for almost 5 days. Oh well.......... But I'm glad I went off the Zoloft now my stomach don't hurt no more. And now that I'm off that Zoloft I can have a good cry if I want. When I was on Zoloft I couldn't even cry..:crying:

Ha ha that's funny my Doc once told me to see a Dermatologist and they found nothing wrong with me and told me to go see a Neuro.:huh:

I am taking Calcium Vit D Magnesium Vitamin B Complex and Coenzyme Q 10 and that's it. I tried the Valerian the other nite and it gave me a bad migraine. Last week I tried the 5 HTP and it made me feel like I was on a really crazy drug and it made me feel really weird it was kinda scary:evil:

 

[crazychick]

Thanx for getting back to me eve. The neuroligist refuses to do a sleep eeg on me i dont k ow why. Because i thoughy that would be better. Im going to demand 1. as i could be on totally wrong talets. My neuroligist dont seem to knowwat he is doing. My eeg both came bk normal which is y i think i need. Like u it vould find th prob strait away. He basically said your javin fits take keppra. And the side affects are inreal.but they arent bothad. I have had to wait 2 month to get to see neuroligist even though side agfects are serious. I think its the meds but neuroligist wo t have it she says its not. I jave to see dermatoligist. Its another prob thwy said. They kept fobbin me off 3 diferent docs it took me to convi ce them.it was th meds they kept sayin it was stress.

 

[Eve]

I think it is time for you to book an appointment with another neurologist ASAP. This Neurologist does not seem to understand your problems. See if you can find another in your town or the next town over. He should be willing to do a Sleep EEG on you. Maybe someone can drive you to the next town over or you can take a train or bus whatever... but this Dr doesn't seem to be working out for you. Or maybe you can see a regular Doctor and he or she can refer you to a different doctor.:e:

 

[momof3boys]

Yeah that feeling before a seizure, is the part that I hate the most! When all my life, I was use to having seizures where I was unconsious and didnt know what was happening during them. In march, when I had the VEEG, I recall my second day, and I remember looking over at my mom to my left and getting that feeling. She asked if I was ok, and I shook my head no. It was then all the seizure stuff started. I hated the feeling so much. The feeling of something bad was going to happen, the feeling of fear and sadness. I told my mom that I wish I was having the complex partial seizures. Only because I am not aware of whats happening, and I cant feel anything, unlike what I feel with the simple partial seizures.

 

[Eve]

Gosh I know what you mean. I just hate that feeling of DREAD. I suddenly awaken and it's as though something really bad has happened or is about to happen that Dread ffeeling just totally freaks me out. To me that dread feeling is worst than the joints jerking, the tummy ache, headache. And I Always
have trouble going back to sleep because I am just so afraid so I stay up all night and until I just zonk out.:gnite:

 

[crazychick]

Im gonna ask my neuroligist again bout sleep eeg then if he says no then im going with someone else. Itmakessense doesnt it if there only happening in my sleep? I get no signs im going to get a seizure at all. Its my dad who.witnesses them. He says am dlonging myself all over my bed. Its quite scary as i have no idea what is going on while om asleep. I thought my body would of woke up. Am so scared.