Has anyone tried to withdraw?

[John-Forrest]

Hello,

I have been having occasional "seizure periods" where every couple of months or so, I have a couple of days of intensive seizure acitivity, then "shift back to normal" until whenever the next one is. This has been going on some 25 years or so. I am now 55.

For a long time, I have been convinced that anti-seizure medications I take actually exacerbate (cause) my seizure problem, making it worse. Then the MDs tell me I need to take even more!

So far, I've tried Dilantin, Depakote, and Tegretol. Somehow, I fell into using tegretol most of the time, but sensed it was only making the problem worse.

Recently, after winding up in the hospital after a nasty bike accident, I made a decision with my MD to try something else. Although Dilantin is not perfect, I wanted to go back on that, while gettin off Tegretol.

I'm finally completing the withdrawal (2 weeks) from Tegretol, but can feel it "fighting back". The Dilantin, however, is making me rebound better (though it makes me a bit sleepy and slow). Nevertheless I'm really determined to make it through this.

What are other people's experiences from withdrawing either completely or switching to another drug? I'd especially like to know if anyone tried to get off Tegretol.

Thanks,
John

[brain]

John!

Welcome! And no it is not unusual to
have isolated episodes, where they
come in "waves" or "clusterings".

Here's a links on some information on
Sporadic / Isolated Clustered Seizures:

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T50

BlackwellSynergy_FullText_Epilepsia, Volume 44 Issue 8 Page 1113

[Bernard]

Hi John, welcome to the forum.

Stacy has tried many different meds, but I don't remember her ever commenting on the withdrawal process from any of them.

[John-Forrest]

Hello Bernard,

I guess what I am wondering if there is proper treatment for "sporadic clusters" as they are called. For myself, I have long wondered if drug treatment is some kind of hype, because I really see little difference before and after. In fact, it seems the more I take the worse they get. Of course, the MDs are going to say my condition is getting worse and I need more.

The thing that has always terrified me about Tegretol is I get this warning it's going to kill me if quit taking it! (Just look at the warning on the bottle). Now I have to ask if I want something that dangerous in my body?

Ideally, I would like to stop all of these drugs, because I'm not sure the AMA knows what they're doing here. It's our brains, not theirs.

Actually I have considered the biofeedback method, but my MassHealth in MA won't cover that. Sometimes I wonder about those brainwave feedback devices you always see advertised. It would be interesting to control our own brains, one reason I get into meditation.

John

[Blessed]

Hello Bernard,

I guess what I am wondering if there is proper treatment for "sporadic clusters" as they are called. For myself, I have long wondered if drug treatment is some kind of hype, because I really see little difference before and after. In fact, it seems the more I take the worse they get. Of course, the MDs are going to say my condition is getting worse and I need more.

The thing that has always terrified me about Tegretol is I get this warning it's going to kill me if quit taking it! (Just look at the warning on the bottle). Now I have to ask if I want something that dangerous in my body?

Ideally, I would like to stop all of these drugs, because I'm not sure the AMA knows what they're doing here. It's our brains, not theirs.

Actually I have considered the biofeedback method, but my MassHealth in MA won't cover that. Sometimes I wonder about those brainwave feedback devices you always see advertised. It would be interesting to control our own brains, one reason I get into meditation.

John

Hi John and Welcome!

I can empathize with you not wanting to take meds that are potentially very dangerous. I have just recently stopped my meds after being on something for 25 years. I did wean off gradually. Yes, it is very important to wean off slowly because you can get some very bad withdrawal symptoms. I suppose that's why they have that label on you prescription bottle. If you are going to stop taking your meds, I would strongly encourage you to do it under your drs. guidance. My neurologist help me wean off my latest med (Zonegran). He did not really agree with my decision but the side effects had become too much for me to bear. He titrated my dose down by 25 mg. per week. That was too fast for me and I had terrible headaches and crushing fatigue. I had to go at a slower pace until my body adjusted.

I think biofeedback sounds like a wonderful plan too. However, here in Birmingham, I have not found a practitioner who will return my calls! So I am pursuing homeopathy. If you are interested in learning more about it there are some threads on this site or you can send me a PM and I will tell you about it.

Blessed

[John-Forrest]

Hi Blessed,

(Not sure what PM is.) I've tried to withdraw off Tegretol before - with some creepy results! Like waking up in cold sweats and having LSD like hallucinatory experiences. (Yoga stretching & deep breathing seemed to help here.) Usually I'd throw in towel and go right back on it. Ordinarily I take about month, this time I'm diving in two weeks since I have Dilantin backing up.

Kind of surprised you have such an open minded neurologist. Most just say drugs are the ONLY way and never let you off the hook. (Same dilemma psychiatric survivors are in.)

Well, I'm kind of seeing the light at the end of the tunnel at this stage. I will say I feel far more clear minded than I felt in a while, despite the weird stuff. But maybe I need that weirdness to kindle my creativity!

Thanks for replying. I will look at things like homeopathy or proper nutrition and such.

John

[Blessed]

John,

I just sent you a PM (private message). I hope you can access it.

What type of creative field are you in?

Blessed

[Bernard]

Hi John, there are a few non-drug therapies you can try (diets, neurofeedback, etc.), but you really should try them in conjunction with your current meds until your have excellent seizure control and then try tapering off the meds (with your docs supervision of course).

PMs = private messages. You can send one to another member by clicking on their user name (or visiting their profile page).

[John-Forrest]

Hello Bernard,

That creates a dilemma. You could try alternative treatments, BUT where are you going to find a doctor who will then taper you off? Virtually all doctors are going to play it safe and keep you on meds (rather than get in malpractice suit). So how are you going to know alternative treatments do anything?

The only way out is to take matters into our own hands and do it ourselves, whether the doctors like it or not. I certain agree tapering is important, if a chemical has been doing something in your brain for years and years, then you get off, it's certainly going to do something. Meanwhile, it may actually be making the condition worse.

Mental health survivors have the same gripe, incidentally. (Interestingly, bipolar patients are ordered to be on Tegretol, too.) Thorazine, for example, causes symtoms like Parkinson's disease. There is a growing political movement for people to have the right to choose what they have in their bodies.

I wonder if there is some similar thing happening with neurolgical patients, to make the choice to get off something if they feel it is not helping.

I suspect neurolgical science in a very primitive state right now. In centuries to come, they will regard these drug treatments as akin to blood letting. All they are doing is suppressing the symtoms, not healing the condition itself.

By the way, thanks for replying...
John

[Bernard]

You could try alternative treatments, BUT where are you going to find a doctor who will then taper you off?

I think most docs would be open to tapering off the meds after you go at least 2 years without any seizure activity.

[POSITIVEPERSON]

Hi John: Whenever I changed meds I always went for accupuncture to help stop the withdrawel feeling and to stop whatever withdrawel szs I might get. I have run out of meds and I tried homeopathy and very happy with it. I always had trouble dropping the last tab of mysoline so I went on the Gard diet with the homeopathy and I am now a month off meds and doing great. Have any ques feel free to PM or ask ques on the board.

Riva

[brain]

Hello Bernard,

That creates a dilemma. You could try alternative treatments, BUT where are you going to find a doctor who will then taper you off? Virtually all doctors are going to play it safe and keep you on meds (rather than get in malpractice suit). So how are you going to know alternative treatments do anything?

John

John:

GOOD QUESTION!

1) Before a Neurologist / Epileptologist is going
to titrate a patient OFF of medications they
first will:

a) Review your history
b) Evaluate you
c) Run some tests
d) Review the tests
e) Make a decision if you are eligible to be
titrated off of medication(s) or at least be
eligible to be reduced but not completely off.

2) Usually they would place the patient in a
video EEG in the hospital where the patient can be
monitored while the titration is reduced rather
that to risk doing it out of office.

a) your brain waves are recorded
b) if something goes haywire; there's staff
there to take care of you
c) the neurologist / epileptologist can be alerted
d) you don't put yourself at risk of going into
status

- OR -

3) The Neurologist / Epileptologist may consult
with you an option of putting you on a newer
medication if you're taking multiple medications
which would usually mean a video EEG at the hospital

a) where titration of meds are changed
over and monitored
b) your brainwaves are recorded
c) staff are there at all times
d) you won't put yourself at risk of going
into status

4) If the titration of the medication is going
well, and there are no complications and the
Neurologist / Epileptologist feels that you are
doing well during the video EEG at the hospital.
He/She may release you once to a certain
level of titration.

a) the titration will be a very slow process
b) you may have to experience more eeg's
than usual during this gradual process


I would not be surprised if the Neurologist
or Epileptologist stops the moment they
begin to see abnormalities and put you back
up a level. And this may be your "new" level
for a time being, for a year or two before
the neurologist / epileptologist attempts to titrate you down.

This is not a professional advice; this is merely
what I have been reading from Neuroscience
Medical textbooks, journals, articles, etc.

It would be very unwise to remove a patient
who has seizure disorder / Epilepsy off of
medication without supervision unless they
are moving them into something else.

[RobinN]

Hi
I have read many places that quite a few anti-epileptic drugs cause seizures in some people. So how to know?

[brain]

Hi
I have read many places that quite a few anti-epileptic drugs cause seizures in some people. So how to know?

Some are caused by meds, some
are caused by people, and some are
caused by accidents

1) if the med is titrated too quickly

2) if the med is withdrawn too suddenly

3) missed dosage

4) too much dosage

5) mixed with alcohol or illegal substance

6) allergic reaction

7) use of anti-epileptic drug in conjunction with OTC
(over the counter medication - ie: cold meds
without consulting with your neurologist / epileptologist first)

8 ) attempting to use "self-formula" or
"self-experiment" of anti-epileptic drug or anti-epileptic drug combination
upon yourself or someone else
(extremely dangerous and illegal)

There are probably others but I cannot
think on the top of my head right now.

[Bernard]

... I have read many places that quite a few anti-epileptic drugs cause seizures in some people. ...

Pregabalin did