Help .. How Do I Know When To Stop Seizure Meds ?

[marciab]

I am so confused .... I reduced my Klonopin from .5 mg to .0625 mg (appr. since I am splitting the pills) over a two month period because it was making me feel completely drugged. Then two days ago, I tried to stop it completely, but had tremours so bad I had to take it again. I couldn't sleep either.

The problem is that I don't know if I got gluttened and that is why I felt so crappy. Or if I had withdrawal symptoms and I just need to stay on the reduced dosage. .0625 is such a small amount. Can it really be necessary to take it ? Do celiacs, after they have eliminated the gluten, respond to a much lower dose than most people ?

I had a few restless nites while going down on the dosage, but this is the first time I had tremours or felt wide awake all nite. Each time I reduced my dosage, I felt better and slept 7 - 9 hours within 3 days. And within a few days started feeling drugged again.

Also, I am wondering how much of this is psychological ?

How did those of you who were having seizures or myoclonous know when it was safe to stop taking your meds ? I've only been gluten-free for 9 months, so maybe it is too early still.

It is entirely possible that I got gluttened from dry roasted peanuts at Wild Oats.

Thanks ... Marcia

[Ursa Major]

Marcia, you're right, you could have been glutened by the peanuts. But it could also be that it was withdrawal symptoms. I know that the amount of medication you were taking was very small. But would you be able to split that in half again, and take an even smaller amount for a while? You might need to do that before going entirely off the meds.

In my opinion, now that your villi are healing, your body is taking up a lot more of the medication than before going gluten-free, and might get as much medication out of half a pill now, as it did from the whole pill before.

Also, it takes usually longer than nine months to completely heal after going gluten-free, and you may not be ready to be completely off your meds. So, try cutting it in half again, and see what happens. If that works, stay on that dose for a couple of months and try going without again.

I hope you work it out!

[marciab]

Ursula,

Love the picture of you and the baby.

I'm sorry to see that you have been through a lot of illness too. I love that we have figured this out and wish others could too. Are you better or still making progress ?

I am down to 1/8 of a tablet, but I guess I can find a way to reduce that even if I have to bite it off.

Marcia

[Ursa Major]

Ursula,

Love the picture of you and the baby.

I'm sorry to see that you have been through a lot of illness too. I love that we have figured this out and wish others could too. Are you better or still making progress ?

I am down to 1/8 of a tablet, but I guess I can find a way to reduce that even if I have to bite it off.

Marcia

Thanks, Zoey is a sweetie for sure!

I am still getting better, and may never be entirely well. 52 years of damage is a lot. But I am a lot better than I was a year ago! And I am off all pain killers (except for having to take one maybe once every three weeks or so, when I have eaten something wrong).

Well, rather than biting it off, you could just crush it and put some of that powder in a spoonful of applesauce? That might be the easiest way.

[marciab]

That's great that you are off of your pain meds. Were you able to stop them all at once or did you have to wean off of them ? It's exciting to watch the progress, I just wish it was quicker.

Good tip, I will try crushing it and putting it in applesauce.

Figuring out which foods are causing non digestive issues is so tricky. I figured out the "D" and "C", cramping, etc related to wheat quickly, but the other symptoms are so much harder for me to pin down.

I had forgotten that my stomach has been a little torn up for the last 3 days so I probably got ahold of something else that didn't agree with me. I tried raw goat cheese this past week.

I am 50 also, so we have been at this a long time. Hope we will both feel better soon.

Marcia

[mouse]

I went off the Klonipin about a week ago because it has corn it it. I noticed my tremors got worse and that I could not get a good nights sleep for several nights. But, this all passed. I was on the .5 also and had to quit it cold turkey. Good Luck.

[Ursa Major]

Good for you, Armetta! That should give Marcia some hope, I'm sure.

Marcia, I was on 50 mg of codeine contin (12-hour-release) twice a day for four years, and often had to take 100mg at night (which was permitted). That just took the edge off the pain, barely enough to function. Many times I had to supplement that with extra strength Tylenol, when the pain got too bad (it was everywhere, but especially in my legs and back, but sometimes my hands and forearms would ache so badly I felt like screaming).

I just quit cold turkey, with no withdrawal symptoms whatsoever. The reason for that is, that with people with chronic pain, painkillers go straight to the pain receptors in the brain, and won't cause addiction. Studies have been done to prove that, and I am living proof that it's true.

I tried goat cheese a while ago, too, and it didn't seem to be a very good idea.

It looks like we have a lot in common. There aren't too many older people here.

[Ruth52]

I had been taking 0.25mg Rivoltril (Klonopin) for 18 years ever since I had a brain cyst removed. The Rivotril was to stop excess eye movements that had resulted from the cyst. On the advise of my Endo. who didn't think that such a small dose would be doing any good I weaned myself off it 18 months ago.

The resulting health issues were subtle but debilitating. Loss of balance, confusion, tiredness, fatigue etc. My GP then put me back on the Rivotril and I haven't looked back. Obviously the brain cyst has still has an effect on my neuro system and the drug even in such a small dose makes a difference.

Maybe your body is telling you that it can't function effectively at the moment without the Klonopin.

Ruth.

[marciab]

Armetta,

That's great that you could stop cold turkey like that. It definitely gives me hope. Are you still ok ? How long had you been on the Klonopin ?

I'm afraid that since I have been on Klonopin / a seizure med for about 16 years now, my body may not be able to function without this med.

I didn't realize Klonopin has corn in it. I am just using a generic, so I am not sure what all is in it.

Ursula,

Did you try the raw cheddar goat cheese ? I heard it was less offensive to sensitive stomachs. The first few bites were heaven. I had a bunless buffalo cheese burger. I've backed off it to see if it is causing problems though. I have the feeling those peanuts need to go too. They taste too much like Planters dry roasted peanuts.

Ruth,

That's what I am thinking. Unfortunately the only way to find out is to try to stop taking it. If it turns out that I need it that's ok too as long as I am not feeling drugged from it. I'm sorry to hear that you had a brain cyst. Is everything ok now ?

Thank you all for replying. I'm not sure how much of what I am feeling is just anxiety and it helped just to hear others experiences.

Marcia

[marciab]

Well ... drum roll please ..........

I stopped taking Klonopin Friday nite and have been seizure free for about a week. No jerking at all during the day either.

I am so excited and yet scared at the same time. Is it going to last ??

I have been using chamomile tea to calm my nerves at nite so I would stop freaking out about not taking a sleep / seizure med. And keeping the tv on so if I did wake up, I would be distracted by it.

Can any of you who have had nocturnal myoclonous or seizures can relate to this ?

I'm also worried that I am not sleeping deep enough to keep my fibro pain from coming back. How long do you think I have to wait before I can be sure that I'm not going to start jerking again ?

Thanks Marcia

[Rikki Tikki]

[it looks like we have a lot in common. There aren't too many older people here.

[marciab]

Me too. I felt terrible every time I tried to reduce the dosage when my body wasn't ready. I had to go up and down on it several times during the last month just to stop the jittery feelings.

I was hanging in there at 1/16 of a tablet forever.

Now, I am a little jumpy, but I can live with it. At least I am not jerking

Welcome to the club ... What are your birthday plans ? We went on a cruise, but I was on the elimination diet and really couldn't enjoy it as much as I should have. Still, it was nice to get away.

Were you taking it for seizures ?