Why is my epilepsy getting better?

[Solicitous]

Hi every one.

Missed you all. Have been through a bit of a hard time.

I was on Benzodiazipines mostly Xanax for over 10 years. A Person should not be on Benzo's for more than 2 years. Two weeks ago I got pretty sick and I was having cluster seizures, and constant episodes through the day. At times during the day my wife couldn't even touch me with out me having a bad episode.

I found out that after being on xanax and benzo's for so long that I became totally tolerant to them and my body was craving for more. I was climbing the wall. Which brought on more seizures.

Luckily I found a new wonderful family doctor, and questioned at why I was on so many meds.
Well to make a long story even longer...my doctor and I decided to make a plan to wean me off of these meds, which is a very dangerous thing to do.

Benzo tolerance and weaning off of them can cause epilepsy symptoms, such as myoclonic jerks and much more. If done the right way it will not cause seizures.

I'm on my second week of slow tapering off these meds, and the only symptom I am have is bouts of depression.

The doctor put me on 10mgs of diazepam, along with ativan, which I am being weaned off slowly of the ativan because it is a benzo.

Since I have been on the diazepam, many of my episodes of seizures has lessened, or totally gone away. Especially the myyoclonic jerks that was severe, and I hardly get any auras.

What kind of frustrates me is that my doctor won't send me to a E clinic until I totally get off of these awefull meds. And she shy's away every time I mention epilepsy. She has a thought that it might be the meds that I am on that is causing my seizures. I researched and research and found that there is no evidence about being on these meds that gives a person seizures.
The only way for this to happen if you suddenly stop these meds, and I aam doing it by the Ahston method, very slowly.

Finally to the point: :clap: Would being on 10 mgs of diazepam 3 times a day and 1 mg of ativan a day be the reason that my seizures has slowed down?

I am more than a little nervous about being weaned off of the ativan, (was on 2mgs a day, now down to 1 mg.) that my seizures will come back twice as bad.

Being on benzo's for so long is a dangerous thing. Also being weaned off can be an awefull thing to go through.

This morning I woke up soaked, and when I woke up my wife was sitting in a chair by the bed with a weird look on her face. I gave her a strange look. Then she pointed at me to look over, and when I did my wife was actually laying beside me sound a sleep. Hallucination.

The only thing is that that is one of the symptoms of tapering off the benzo's.

So I am very confused at what is going on with me. I am on a benzo support group were they think every symptom is benzo related.

And one big issue I have is that it took 30 years of constant complaining to doctors that I had muscle problems, and after 30 years they finally listened and I was diagnosed with a mild for of muscular dystrophy, and I don't want to wait another 30 years to be diagnosed with epilepsy.

Many people have told me lately that I am looking so much better. Hmmm

Any help or suggestions would be greatly appreciated.

Sorry to write a long story instead of a post, but it is playing on my mind.

Thanks all.

Norm Beam

 

[Bernard]

... Would being on 10 mgs of diazepam 3 times a day and 1 mg of ativan a day be the reason that my seizures has slowed down?...

Both diazepam and ativan are used as emergency meds to arrest seizures. It's possible to develop addictions to either one too.

 

[Solicitous]

Both diazepam and ativan are used as emergency meds to arrest seizures. It's possible to develop addictions to either one too.

Hi Bernard.

Yes both diazepam and ativan are very addictive, and they are also benzodiazapines in which I have to be weaned off too.

The reason I am on diazepam is to replace and stabilize from the withdraw symptoms.

I believe that it is the diazepam that is stopping my seizures "temporarily."


Thanks
Norm

 

[Endless]

Norm,

Benzo withdrawl is so totally out of my area of experience and expertise, so I can't give advice. But I can give support. Hang in there. <<<<<<Big Hug>>>>>

Drug withdrawl is awful. I'm going through lamictal withdrawl right now and it's horrible. The doc took me off cold turkey due to rash. I keep thinking if I pop one little 25mg pill all this will stop. But then I'd be starting all over again, and also reactivating the rash that made it necessary for me to go off in the first place. So I'm hanging tight. Please, you hang tight too. It's hard right now but soon you'll be feeling better. If it gets too bad, be sure to call your doc. he/she needs to know what's going on with you.

One more: <<<< hug >>>>

 

[Solicitous]

Withdraw and epilepsy getting better from meds

Norm,

Benzo withdrawl is so totally out of my area of experience and expertise, so I can't give advice. But I can give support. Hang in there. <<<<<<Big Hug>>>>>

Drug withdrawl is awful. I'm going through lamictal withdrawl right now and it's horrible. The doc took me off cold turkey due to rash. I keep thinking if I pop one little 25mg pill all this will stop. But then I'd be starting all over again, and also reactivating the rash that made it necessary for me to go off in the first place. So I'm hanging tight. Please, you hang tight too. It's hard right now but soon you'll be feeling better. If it gets too bad, be sure to call your doc. he/she needs to know what's going on with you.

One more: <<<< hug >>>>

Thanks Endless.

Yes drug withdrawwl can be awful. I hope that you get through it quickly.

Going off of a med cold turkey can be brutal and sometimes very dangerous.

A gradual very slow with draw is the safest.

My doctor has been wonderful helping me through this. She assigned me a nurse and a councilor to help me through the process.

For me I am having very mild side effects.

I still need an answer about being on 1 mg ativan and 30mg diazepam, if that is why my seizure symptoms have eased off.

((((((((((((((((HUGS))))))))))))))) back to you, Endless and thanks so much for your continued support.
Norm Beam

 

[Endless]

Wow, you got a nurse and a counselor? It sounds like you have a GREAT doc. I don't care what people in the U.S. say - I think Canada has a superior health system. It's not perfect, but my friends that live in Canada are pretty happy campers.

Or maybe you are a secret celebrity who gets special treatment? Hmmm... trying to think of all the famous people from Ontario.

Me? My neuro said go off the lamictal cold turkey, gave me a scrip to start on trileptal in a couple of weeks, sent me home, and said "see you in a month." I didn't even get a call back when I called in with problems today (BP, heart rate, vision, multiple c/p seizures, etc). My Primary Care doc just said, "Call your neuro." When I asked My PCP's triage nurse when I should go in to see the doctor, the nurse said, "If your pulse stays over 120 for a full day." It's been 110 for 8 hours at rest, so I guess that doesn't count. And that's the last I've heard of it. Reality check: Am I being too needy, here? This is our world class healthcare system at work.

I'm happy you aren't experiencing many symptoms, Norm. It's still not easy. I think you are understating things, though. I've been reading your posts and it sounds like it's been really rough.

Now, I DO have it easy, because I'm not coming off an addictive drug. You are, and that stinks.

Keep hanging in there.

 

[Solicitous]

Ohhhhh Endless

Wow, you got a nurse and a counselor? It sounds like you have a GREAT doc. I don't care what people in the U.S. say - I think Canada has a superior health system. It's not perfect, but my friends that live in Canada are pretty happy campers.

Or maybe you are a secret celebrity who gets special treatment? Hmmm... trying to think of all the famous people from Ontario.

Me? My neuro said go off the lamictal cold turkey, gave me a scrip to start on trileptal in a couple of weeks, sent me home, and said "see you in a month." I didn't even get a call back when I called in with problems today (BP, heart rate, vision, multiple c/p seizures, etc). My Primary Care doc just said, "Call your neuro." When I asked My PCP's triage nurse when I should go in to see the doctor, the nurse said, "If your pulse stays over 120 for a full day." It's been 110 for 8 hours at rest, so I guess that doesn't count. And that's the last I've heard of it. Reality check: Am I being too needy, here? This is our world class healthcare system at work.

I'm happy you aren't experiencing many symptoms, Norm. It's still not easy. I think you are understating things, though. I've been reading your posts and it sounds like it's been really rough.

Now, I DO have it easy, because I'm not coming off an addictive drug. You are, and that stinks.

Keep hanging in there.

Ohhh Endless.

I know why you are called Endless. Because your support is Endless. You are always there not only for support but you are always a spirit lifter. Bless you.

My wife calls me " a stubborn old cuss" because I can be on my death bed and still crack a joke and give her a thumbs up sign.

Well maybe if I was a secret celebrity I would be Jerry Lewis :yippee:

I hope that you get through your going off the med cold turkey.
I am really concerned about your heart rate. Having a heart rate of 110 at rest has me worried. If you were really active, I'm sure that it would be much higher than that.
I believe that it warrants a trip to the hospital. Now don't you be a stubborn cuss like me. Take an ambulance, and when you get to the hospital tell them that Jerry Lewis sent you.

But serious, I am worried about you Endless.

You take good care of yourself Endless.

Wishing and praying that you recover very quick.

Sincerely, Jerry Lewis (AKA Norm Beam)

 

[Endless]

Triage nurse says above 120 for a full day. I trust her on that one. (I hate hospitals. They keep you for hours, don't do anything for you, then bill you a fortune. If you are really unlucky they send you home with a door prize - a hospital borne infection)

Secret celebrity - well, if I was a guy I'd be Bono. Hmmm... maybe Tina Fey?

 

[Crystal11]

I personally have had this happen to me. I was on Tegretol XR for 5 years and last year it kinda stopped working. I had two complex partials too close together and went to the E.R. and was told that I was one of those people that cannot wait several hours to take late meds- and that Tegretol XR just wore off/stopped working.
Being on Tegretol XR 600mg was just fine for the longest time, and then neuro increased it to 700mg per day- which made me seizures more frequent and made me angry that it was worse than before. I told her and I was taken back down to 600mg. Then I made the decision on my own to reduce it down to 400mg- which neuro found out and let me do what I wanted. I did it because I was way too sleepy with 3000mg of Keppra XR in my system.

Anyway- too many medications can just add to the list of side effects. One can do one thing to you, and the other can do another thing to you and make you feel bad, or become dependant on them.

Hope all becomes better soon.
Oh- in my opinion, it seems that your family doc may be thinking that you don't have epilepsy or seizure disorder. I hope I didn't hear you wrong.
If this is what your family doc is doing, ask for a referral to see a neurologist.
A neurologist can def. help you with any muscle conditions and possible seizure disorder and also make the best decision on which meds to prescribe. They are more concious or med choices and keeping the list smallest as possible for the most effective treatment.

I was asked to think about surgery since I've been on Dilantin, Tegretol XR, Keppra XR, and Lamictal. Dilantin didn't work at all- Tegreto XR wore off/stopped working, and I'm on Keppra XR and Lamictal which seems to make such a big difference! Neuro actually said that the two together is a good choice and are known to be a good polytherapy plan.

Please take care
Let us know how things work out for you.

Crystal

 

[Endless]

That is great advice, Crystal. I agree.

 

[Endless]

Norm,

How are you feeling today?