New to sharing my 32 years with epilepsy

[stormydys]

Hi, new to talking about epilepsy in a forum, I have had many different types of seizures, you name it and I more than likely have had one Through the years the names keep changing when it comes to seizures, I have been on meds for at least 32 years, starting on phenobarbitol as a 7 year old ( found out that was a no-no ) , then tegretol, felbamate, depakote, Topamax, dilantin, various others that I can't remember, most recent med added to the mix would be keppra and the klonopin , its been hard getting used to them , help with seizures but don't control them any better, been considering going back to the good ole depakote, I am almost to bitter to be around on Keppra or the Klonopin, don't know the culprite. I have never had a driver's license , been on disability since early twenties, seems life just kind of skips right over me, and now the neurologist's finally are talking about the brains cells lost in a seizure, I was always told the standard story, after five minutes your brain cells will start to die, it doesn't take five minutes, depends on the seizure my neurologist said. I thought about this and replied, " you know I have seen many neurologists , had the video monitoring twice, talked about brain surgery over the years and not one doctor ever explained that to me why?" He just looked at me and said " would it have mattered?" YES!!! I just needed to vent sorry how long this ended up being

 

[valeriedl]

Hi stormydys! Your post almost sounds like I had wrote it. I'm 35 and had my first seizure, a grand mal, almost 9 years ago now. I also have been on so many different meds that I've lost track of the names of them and if you can name the type of seizure I've probably had it. I had my driver's liscense taken away and I'm living on Social Security.

I'm unable to have brain surgery because I have damage on both sides of my brain. I don't know exactally what the "damage" is. My neuro suggested I try a VNS (vagus nerve stimulator) implant, it's sort of like a pace maker for your brain. It is hooked to the vagus nerve and depending on how it is adjusted it sends a jolt up to your brain every so often of a certain strength. If you feel a seizure coming on you have a magnet that you rub over the spot where the implant is and it sends a jolt up right then and there to stop the seizure.

It has helped me a good bit, but I'm still having seizures. I might have a grand mal once a year, but all the others are of all different types. Before I got it I was having at least 3 seizures a week that were really bad. Most of them I'd end up in the ER after. Now that I have it I'm having 2 (give or take) a month that aren't nearly as bad as before.

When I got it they told me that it would probably beable to stop taking meds and with the VNS it would stop the seizures, but that didn't happen for me. The neuro did tell me that it works different with different people. Some people it will stop the seizures and like me, you won't have as many seizures and they won't be as bad. No guarentee that you won't have to beable to stop taking the meds.

Another problem is that I usually don't feel the seizure coming on. I'll just have it then come out of it and didn't know I had one at all. If you are with someone and they see you are having a seizure then they can use the magnet on you to help bring you out of the seizure.

This is a great website to come and ask questions and even answer other people's. The people know alot of the answers and can tell you were to get them. You find out that things happening to you happen to other people too so you know you aren't alone in this.

Great to meet you!

 

[stormydys]

thanks for welcoming me , it is nice to know I am not alone, had my first visit with new neurologist this morning, he is taking me off of dilantin , kind of scared about it , I hope after 20 years on it I have no problem coming off of it, he wants to replace it with lamictal, I have never taken that , any thoughts about it? cost?

 

[Nakamova]

Hi stormydys, welcome to CWE!

I was on Dilantin at first, but because of worries about the long-term side effects, I switched to Lamictal. I'm on the generic form of Lamictal (Lamotrigine), which costs me $10/month on my insurance plan. The brand version would be much more expensive on my plan, and if I didn't have insurance at all, it would cost upwards of $1000/month.

Lamictal controls my seizures fine. I had some side effects (restless sleep, hair loss, mild headaches) that went away after a few months. I continue to have other side effects (blurry vision, very dry mouth and eyes in the morning after waking, some chin acne). No cognitive side effects as far as I can tell, and Lamictal has a good reputation in this area. Everyone's experience is different though, so no guarantees that yours will be any better or worse.

One other thing to note with Lamictal: Make sure to ramp up onto it "low and slow" -- tiny increments, over a long period of time. This minimizes the risk of an allergic reaction.

Best,
Nakamova

 

[RobinN]

Welcome Stormydys -
I am glad that you found us here. I have found this group to be so supportive for me while learning how to care for my daughter who has a seizure disorder.

I hope that you get comfortable here. If you need any help, don't hesitate asking one of the moderators.

 

[Krista2882]

Welcome, Stormydys!
Lamictal has worked well for me. I was taking the maximum doses of both Tegretol and Keppra and my seizures still weren't completely under control. I had a video EEG, and then they added Lamictal to the mix. It helped A LOT. The only side effect I have now is double vision if I don't eat and drink enough when I take it. There is a generic which also works well for me, so it only costs $5 per month with my health insurance.

 

[stormydys]

I am still working on getting some courage and taking the plunge with Lamictal , started coming down from dilantin slowly and am already experiencing some severe headache, feels like needles on the back of my head! either that or my scalp is being pulled off, lol. Tonight is the night with my new 'best friend' (lamictal) , wish me luck

 

[stormydys]

I am still working on getting some courage and taking the plunge with Lamictal , started coming down from dilantin slowly and am already experiencing some severe headache, feels like needles on the back of my head! either that or my scalp is being pulled off, lol. Tonight is the night with my new 'best friend' (lamictal) , wish me luck

okay so maybe tonight is not the night! I wish just once I could get a straight answer out of a doctor or neurologist. Now I am scared to take lamictal xr because I already have a rash from Dilantin ! I don't know if it would be safe to throw Lamictal in the mix , isn't that kind of throwing fuel on the fire ,ugggghhh. I guess I just chose which one is worse, status epilepticus from withdrawals from dilantin or chance making my skin rash worse and going to hospital anyways! I am stuck between a rock and a hard spot, any thoughts ? I really need to take it but can I ? so tired and scared.

 

[Nakamova]

With Lamictal, the chance of a rash is minimized if you can ramp up "low and slow". When I went on it, I went up by 12 mg increments -- by razoring a 25mg pill in half -- and I stayed at each increment for two weeks. I'm on the regular version (not the xr), so I don't know if this slow ramp-up is possible for you, but you might want to ask your doc just to see.

The same "low and slow" rule holds for tapering off meds, so perhaps you could go even slower on the Dilantin than you are now? Just stay put at the level you're currently at for a bit to see if the rash subsides and the withdrawal symptoms lessen.

 

[stormydys]

With Lamictal, the chance of a rash is minimized if you can ramp up "low and slow". When I went on it, I went up by 12 mg increments -- by razoring a 25mg pill in half -- and I stayed at each increment for two weeks. I'm on the regular version (not the xr), so I don't know if this slow ramp-up is possible for you, but you might want to ask your doc just to see.

The same "low and slow" rule holds for tapering off meds, so perhaps you could go even slower on the Dilantin than you are now? Just stay put at the level you're currently at for a bit to see if the rash subsides and the withdrawal symptoms lessen.

I don't think the ramping that slow is possible for lamictal xr, it starts at 50 mgs, then 100mgs, then it goes to 200mgs, that is the titration sample he gave me. and the dilantin is in 100mg capsules. I tried the lamictal xr last night after all , my head hurt so bad! It helped until around 10:00 am , headache and body pains till its time for meds again :0

 

[Nakamova]

You can definitely get Dilantin in the 30mg size -- at one time I was on a 90mg dose (3 of the 30s). You could ask your neuro about that.

Even without the smaller size of Lamictal, you can still opt to stay at a given dose for while before moving up to the next dose. That gives your barin and body some time to adjust.

 

[stormydys]

You can definitely get Dilantin in the 30mg size -- at one time I was on a 90mg dose (3 of the 30s). You could ask your neuro about that.

Even without the smaller size of Lamictal, you can still opt to stay at a given dose for while before moving up to the next dose. That gives your barin and body some time to adjust.

that's great news , thanks for telling me , that will help me get adjusted much easier I will be calling Doctor in morning to see about a change to the 30mgs

 

[stormydys]

still ramping up on the lamictal xr , and staying at 100 mg's of dilantin , headaches are coming and going all day today, my teeth have started to hurt and I am wondering if that has something to do with the withdrawal from dilantin? Haven't got a hold of the doctor , seems like the internet is more helpful, at least you get a response. I am starting to have aproblem going to sleep at night, great thats all I need is insomnia, lol

 

[LW6279]

Stormdys,

This maybe withdrawal. I have had teeth pain since I stopped taking Neurontin. It comes and goes. Dentist advised it was the withdrawal.

LW

 

[Nakamova]

Lamictal gave me very restless sleep/vivd dreams for the first two months. Eventually that went away. I had mild headaches too -- i found that Tylenol helped.

 

[stormydys]

I made it through the first week of ramping up with lamictal with no seizures , thats good . the withdrawals are still around just not as bad at the moment. Today i had a seizure cooking super, fell on the kitchen floor, glad I was not alone , just now I had a strange twitching, jerky sensation all around my mouth , it made my tongue curl and move around inside my mouth like I was choking , once again I am glad I am not alone !!! what kind of seizure is this or is this more withdrawal ? help! should I quit the lamictal and just go back to dilantin?