My Personal N=1

[Nakamova]

The general rule of thumb is to taper down no faster than you ramped up, and if possible go even slower, especially if you been on the medication for a long time. Low and Slow (small increments + staying each level long enough for your brain to adjust).

Other things to consider are the half-lives of the particular meds, and whether they interact in any way that might affect their clearance rates.

 

[AlohaBird]

The general rule of thumb is to taper down no faster than you ramped up, and if possible go even slower, especially if you been on the medication for a long time. Low and Slow (small increments + staying each level long enough for your brain to adjust).

Other things to consider are the half-lives of the particular meds, and whether they interact in any way that might affect their clearance rates.

I'm on Phenobarbitol and Depakote. IIRC, the pheno has a longer half life. (Do you know of anyplace to look those up?) I've been on the Pheno longer, since ~1990 whereas I added the depakote in ~2005.

I think I'll take my Hawaiian healer guy's advice to go a minimum of two weeks and then re-evaluate.

BTW, he is a traditional Hawaiian healer but he is not adverse to any and all western medicine. He sees the optimal situation being the two working together in a complementary way. He himself recently had open heart surgery to repair a congenital deformity in a valve. No amount of body work and good nutrition are going to fix something like that but his doctors were amazed at how well and quickly he healed up with minimal meds.

Many of the MD doctors here (particularly the ones who were born here) welcome healers like him into the process for their patients. The patients are able to go home sooner with less pain and less meds. A win win all around.

I think Hawaii and particularly rural Molokai is kind of a rarity when it comes to allopathic/holistic cooperation like this. I wish it were more widespread.

 

[lindsayschu2]

Seems like I've spent the majority of the past 2 years always in the process of going onto, and off of, something. I have noticed even if I'm going too fast, I'm usually OK for a day or two--if I have a breakthrough, it's a few days into it. With topamax my problems were always on day 4 or 5--I was told it has a longer half life than some and that was why. I've usually ultimately ended up going slower than the doctor recommends by a lot, rather than faster by necessity due to breakthroughs. That's been my experience but probably not everyone's!

-- I was typing the above at the same time you were writing your last response Aloha--the pharmacist can tell you the half lives (at least mine did).

 

[AlohaBird]

Well, today is day four for me of stepping back the pheno from 75% to 50% of the Rx.
I've been sleeping great with absolutely no auras or "rude awakenings" in the night. Those getting jolted awake feeling like a seizure is coming episodes are usually my indicator if I am skating too close to the edge.

Any opinions as to which of the two pheno or depakote is the lesser evil as far as organ buildup?

 

[AlohaBird]

Aloha--the pharmacist can tell you the half lives (at least mine did).

That's a good idea. They probably know more than the neuros anyway. Right now I don't even have a neurologist because the nearest ones are on either Maui or Oahu.

 

[Nakamova]

Phenobarbital's half-life is 53 to 118 hours. Roughly speaking, it would take 10 to 20 days days for it to leave your system altogether. A standard taper for someone who has been taking it for several years would be 2 to 3 months -- or longer. I recommend going super-slow -- it just makes it easier for the brain to adjust and recalibrate. And because Phenobarbital has an effect on REM sleep, a slow taper can help minimize the risk for sleep-related withdrawal side effects like insomnia or nightmares.

Depakote's half-life is 9 to 16 hours. It would be out of your system in 2 to 3 days. One suggested conservative withdrawal rate would be no faster than 250–500mg a day every five to seven days.

HOWEVER: Depakote can increase serum Phenobarbital levels (thereby slowing it's half-life). This means that if you were to taper off both meds at once, or only go off of the Depakote, your Phenobarb levels could drop more quickly than you might otherwise expect.

 

[AlohaBird]

Nak, you are the Thank You Queen with good reason. Great info!

Based on the above I think I will concentrate on getting off the pheno first. Hopefully the depakote can keep things on an even keel during the transition.

I would think a longer half life and slower clearance rate would equate with a greater level of cumulative buildup. No?

 

[AlohaBird]

testing new sig.

Ah. it works. That is my beloved seizure alert dog, Valentino, in the pic with me.

 

[Nakamova]

Very cute pup! Is he a shepherd mix?

Basically, if you reduce the Depakote, then you are in effect reducing both meds at once, which makes the tapering process more unpredictable and potentially more stressful for your brain and body. Much better to do only the pheno. It's safer in terms of the pharmacokinetics, and it's cleaner from a scientific standpoint (in terms of connecting how you feel to one med vs. the other).

When you added the Depakote in 2005, did you notice an unusual bump in Phenobarb-related side effects and/or general fatigue? You wouldn't necessarily have picked up on anything unexpected, since the Depakote ramp-up was presumably gradual, but I'm just curious if you remember feeling extra "drugged" during the process.

 

[masterjen]

I seriously have to watch nightshades. I do OK with canned tomatoes in limited quanities, but cayenne and paprika give me seizures and I show signs of inflammation/allergy from potatoes. I haven't tested out eggplant so I don't know. When my gut was in very bad shape, eating anything with cayenne or paprika would give me a myoclonic seizure within the hour. Two days ago I was pressured into going out on a team lunch at work (I don't like to go to restaurants since I can't fully control what I am eating) and had chicken with paprika on it. I seemed to do fine but had a night full of seizures that night, first bad night in over 6 months. I don't think nightshades are bad for everyone but thought I would mention so you can watch and see if they are an issue for you. They have lectins and alkaloids that can be problems for some.

Lindsay, this is interesting. Many of those who have celiac disease or gluten sensitivity are also sensitive to nightshades. I don't know if the reverse is also true (ie. that those sensitive to nightshades may also find themselves reacting to gluten) but I'd be curious to know if you have ever tried going gluten free. Just a note of caution, though, is that you would have to be completely gluten free to assess this, which would include a lot of label reading of processed foods to make sure there are no gluten products in them.

 

[lindsayschu2]

No I'm not gluten free--I was tested for celiac and it was negative, but tested positive for the gene. I don't get digestive distress from gluten, or body inflammation like I do other foods I have issues with. But I eat almost no highly processed grains at all--no pasta, no white bread--I only eat a little whole grain bread a day. I just learned that low carb just makes me feel better. Since I don't eat anything processed at all and only eat foods I cook myself from organics, it probably wouldn't be too hard to try gluten free--I read every label even on baking ingredients to avoid all kinds of stuff as it is. I wonder why the connection between nightshades and gluten?? I never had a problem with nightshades before--this is new within the past 2 years. But I'm having a lot of dietary issues I didn't used to have before I hit perimenopause. It's a major PITA.

 

[MaryK]

I have taken phenobarbital forever. Nak is right, the half life is unbelievable. Be very careful with the taper. I have a friend that took six months to taper completely off phenobarbital, per her neurologist's instructions. I guess it is a combination of your other drugs and your phenobarbital dose, but since 1990 that is a long time.

 

[masterjen]

Sorry for hijacking this thread alohabird, but I just wanted to reply once more to lindsay's thread.
The main connection between nightshades and gluten is that both can cause "leaky gut" in those who are sensitive to them, and a leaky gut causes poisons (like gluten, lectins from certain nightshades, alkaloids from certain nightshades) to seep out of the intestine and into the bloodstream. The majority of people can handle these so-called poisons and their bodies get rid of them, but this is not the case in those who are sensitive to them.
It's very interesting you tested positive for the gene. Did the doctor say this could mean you are at risk for developing celiac and should be tested for it every few years? I have celiac, and my brother has the gene and he was told to have the celiac blood test every three years whether or not he has symptoms of gluten sensitivity.

 

[lindsayschu2]

Ok sorry too Aloha jen this is super interesting. I have really wondered why I have such a bad reaction to nightshades when it seems like only a handful of people do--major diarrhea if I get too much, seizures even if I get a little, out of whack for days. No the doctor didn't say anything about repeat celiac tests. How would I know I have a problem? I have several dietary allergies and sensitivities and have learned the signs to them. I don't seem to have issues to gluten unless I get a whopping dose--small quantities and I seem OK, large quantities and I definitely have a problem. Doc did say a lot of people have the gene but not celiac.

 

[AlohaBird]

Very cute pup! Is he a shepherd mix?

Basically, if you reduce the Depakote, then you are in effect reducing both meds at once, which makes the tapering process more unpredictable and potentially more stressful for your brain and body. Much better to do only the pheno. It's safer in terms of the pharmacokinetics, and it's cleaner from a scientific standpoint (in terms of connecting how you feel to one med vs. the other).

When you added the Depakote in 2005, did you notice an unusual bump in Phenobarb-related side effects and/or general fatigue? You wouldn't necessarily have picked up on anything unexpected, since the Depakote ramp-up was presumably gradual, but I'm just curious if you remember feeling extra "drugged" during the process.

Valentino is a pure bred Mexican Street Mutt. We adopted each other in Baja one summer. I have no idea what his genetics are but a lot of the street dogs down there are cross bred with coyote.

Yes, that sounds like a wise plan for tapering off. I don't remember feeling extra tired when I started the Depakote but it was a gradual ramp up.

 

[AlohaBird]

Ok sorry too Aloha jen this is super interesting. I have really wondered why I have such a bad reaction to nightshades when it seems like only a handful of people do--major diarrhea if I get too much, seizures even if I get a little, out of whack for days. No the doctor didn't say anything about repeat celiac tests. How would I know I have a problem? I have several dietary allergies and sensitivities and have learned the signs to them. I don't seem to have issues to gluten unless I get a whopping dose--small quantities and I seem OK, large quantities and I definitely have a problem. Doc did say a lot of people have the gene but not celiac.

No need to apologize. This is very interesting. Dr Symes just sent out an email about leaky gut a few days ago and he did say that nightshades have the potential to do the same damage as grains but only if you eat them uncooked. He is counseling against excessive raw tomatoes and bell peppers and such but saying that the lectins are neutralized by cooking so my moussaka is still on!

 

[AlohaBird]

I have taken phenobarbital forever. Nak is right, the half life is unbelievable. Be very careful with the taper. I have a friend that took six months to taper completely off phenobarbital, per her neurologist's instructions. I guess it is a combination of your other drugs and your phenobarbital dose, but since 1990 that is a long time.

Yep, there is a lot of crud to clean out of the pipes after 25 years. I am taking it slowly. Day 5 at this level and so far feeling and sleeping great.

 

[lindsayschu2]

My biggest problem by far is paprika and cayenne--neither are cooked when they are sprinkled on top of things like that chicken I ate the other day. I don't have too many problems with canned tomatoes--they say those aren't as bad as fresh for some reason, but if I eat tomatoes for consecutive days then I'm in trouble, cooked or not. Another thing I have read is that each nightshade has a different alkaloid so it's possible to have issues with some alkaloids and not others. I absolutely can't eat potatoes, cooked or not--cooking may effect leaky gut but it does not affect the alkaloids. In fact cooking can make alkaloids worse in potatoes. Potato alkaloids can kill anyone, sensitive or not--for example, if you eat several raw green potatoes. I desperately miss french fries and plan to try them again eventually. I used to be able to eat these things, so it stands to reason that some day I may be able to again!

 

[masterjen]

Ok sorry too Aloha jen this is super interesting. I have really wondered why I have such a bad reaction to nightshades when it seems like only a handful of people do--major diarrhea if I get too much, seizures even if I get a little, out of whack for days. No the doctor didn't say anything about repeat celiac tests. How would I know I have a problem? I have several dietary allergies and sensitivities and have learned the signs to them. I don't seem to have issues to gluten unless I get a whopping dose--small quantities and I seem OK, large quantities and I definitely have a problem. Doc did say a lot of people have the gene but not celiac.

The most obvious sign of a problem would be GI issues, perhaps similar to what you have with the nightshades: diarrhea, gas, bloating. But some less obvious symptoms can occur as well as or even in absence of the GI ones, such as headaches, migraines, neuropathy (numbness and tingling in hands and feet, for example) and joint pain. Since you seem to react to large quantities of gluten but not small ones, perhaps what you have is non-celiac gluten sensitivity. Did you doc suggest this at all?
Since my brother also has the gene but no symptoms, he was told to get the blood test for celiac every 3 years even if he has no symptoms (and sooner if he does), since it is best to catch the condition early and minimize all the potential health ramifications of eating gluten when one shouldn't be eating it.

 

[AlohaBird]

My biggest problem by far is paprika and cayenne--neither are cooked when they are sprinkled on top of things like that chicken I ate the other day. I don't have too many problems with canned tomatoes--they say those aren't as bad as fresh for some reason, but if I eat tomatoes for consecutive days then I'm in trouble, cooked or not. Another thing I have read is that each nightshade has a different alkaloid so it's possible to have issues with some alkaloids and not others. I absolutely can't eat potatoes, cooked or not--cooking may effect leaky gut but it does not affect the alkaloids. In fact cooking can make alkaloids worse in potatoes. Potato alkaloids can kill anyone, sensitive or not--for example, if you eat several raw green potatoes. I desperately miss french fries and plan to try them again eventually. I used to be able to eat these things, so it stands to reason that some day I may be able to again!

Canned tomatoes are usually flash heated to make them shelf stable so perhaps that is the same as cooking as far as the lectins are concerned.
Potatoes are definitely toxic raw. I gave those up a long time ago in the name of low carbing. Have you ever tried parsnip oven fries? They are a tasty substitute that might be easier for you to digest.