Medication doses and seizure control

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masterjen

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Is it possible to have better seizure control on a lower dose of a medication than at a higher dose? I'm wondering if I am experiencing this (have been noticing it for 2 months) or if it could be fluke. There was an initial increase in side effects when the dose was increased that lasted for 2 weeks, then they subsided.
I am interested in personal experiences but particularly in medical-based articles anyone has found pertaining to this.
Thanks in advance!
 
masterjen

I believe it is possible to have better control on a lower dose of medication, the reason I say this is because my medication was reduced I think 4 years ago maybe a few months more I would have to look it up but since then I have better control of my seizures I think anyway. I could not find any medical based proof at the time and I think some of it has to do with age as well, but I would be very interested if you did find any medical based articles on this.
 
masterjen

I believe it is possible to have better control on a lower dose of medication, the reason I say this is because my medication was reduced I think 4 years ago maybe a few months more I would have to look it up but since then I have better control of my seizures I think anyway. I could not find any medical based proof at the time and I think some of it has to do with age as well, but I would be very interested if you did find any medical based articles on this.
I disagree Every case is different, just like not every can be controlled by the same meds. I'm refractory and I'm med resistant to every drug in the the Tegretol family except Tegretol and I'm allergic to 5 epilepsy. What controls some people with Tegretol wouldn't do a thing for me. I don't have side effects from anything except my Fycompa
 
Hi Jen,
Yes, I think that "less is more" can definitely apply to seizures meds. i think this has to do with the side effects.
Personal example. I take phenobarbitol which is a central nervous system depressant. That, in excess, can depress respiration at night leading to the "Central" kind of sleep apnea which can cause nocturnal seizures. (working on getting off that med).

Lots of meds can have side effects such as weight gain, thyroid disruption, blood sugar dis-regulation, nutrient malabsorption, etc. All of those can have a downward spiral effect on metabolism, weight, and general health. I don't have a scientific paper to say that general health is good for neurological health but it seems intuitive to me.


My next door neighbor and good friend is retired from a lucrative career in the pharmaceutical industry developing new drugs for some very large corporations. He says that the industry standard practice when determining what should be the officially recommended dosage is to draw the line so that 90% of the population at large will be getting as much or more than they need at this dose.

People vary widely in how they metabolize any given med due to lots of factors such as age, gender, activity level, etc, but if 90% are getting enough *or more*, then that means a lot of people are being over-medicated.

The trick is finding where you are within that 90%.
 
I think everyone is different when it comes to what dose of meds they need to take in order to control their seizures.

Through the years my neuro had to mess around with my meds lowering and raising them to find out what worked best. Sometimes a lower dose did work better than a higher dose and sometimes it didn't. It's just a sort of trial and error type of thing.

About 4 months ago my neuro lowered the dose of one of my meds 500mg. I had no changes in the number of seizures I normally have so on my last visit, about a month ago, we decided to lower it 500mg again. Within the next week after doing that I had 4 seizures so we raised it back up 500mg. I'm still having seizures but it's the amount that I usually have.
 
Thanks Fedup - I'm glad I'm not the only one who has noticed this.

Belinda - I am wondering if it is possible to have better control on lower dose of a medication; my implication was not that this would be the case for everyone. Plus, I'm no longer on Tegretol.

Aloha - fortunately I do not have sleep apnea (tested recently), and as I mentioned I thankfully do not have any side effects that could in turn cause seizures

Valerie - I'm glad that you were able to lower one of the medications by 500 mg with no change in seizures! Too bad you were not maintained at the additional 500 mg drop :(

Still hoping for more experiences or medical articles that discuss this. Still no luck for me on google.
 
Aloha - fortunately I do not have sleep apnea (tested recently), and as I mentioned I thankfully do not have any side effects that could in turn cause seizures.
That's good about the apnea. I'm going to be having a sleep study done soon. I know I don't have OSA but i might have CSA.

My concern is more about the side effects that are sub-clinical for such a long time that they are never connected as officially being side effects. If a med causes you to not absorb magnesium well, you could develop a magnesium deficiency despite having a Mg rich diet. The same goes for all the B vitamins including folate.
If a person on AEDs tests as having hypothyroid they are not going to be told to reduce the dose of the AED and see how that works, they are going to be handed some Synthoid.
If a person on AEDs develops osteopenia they are not going to be told to drink bone broth and decrease the AED a bit, they are going to be handed some Fosamax.
If a person on AEDs develops depression, they are given an SSRI and told that depression frequently happens in people with epilepsy. <sympathetic pat on the hand>.

The problem is that all of these things can be direct side effects of the AED but they don't get recorded as such and the patient is often not made aware of the connection, they are just seen as "other medical conditions the same patient happened to have".
 
Like I said, I don't have any side effects such as you are mentioning. So, back to my original post: Is it possible to have better seizure control on a lower dose of a medication than at a higher dose? . . . I am interested in personal experiences but particularly in medical-based articles anyone has found pertaining to this.
Thanks in advance!
 
Is it possible to have better seizure control on a lower dose of a medication than at a higher dose? I'm wondering if I am experiencing this (have been noticing it for 2 months) or if it could be fluke. There was an initial increase in side effects when the dose was increased that lasted for 2 weeks, then they subsided.
I am interested in personal experiences but particularly in medical-based articles anyone has found pertaining to this.
Thanks in advance!

Recently when I had my blood levels done they had gotten extremely high. The doc explained that Carbamazapine (Tegretol), like most drugs is effective at a certain blood level. To little & it has no curative effect, too much & it can increase seizures.
 
If a person on AEDs develops osteopenia they are not going to be told to drink bone broth and decrease the AED a bit, they are going to be handed some Fosamax.
You have to realize that if someone develops osteopenia due to a medication then it is possible that the problem is with absorption in which case no matter how much one ingests, it will not help.

Also, be aware that bone broth has so little calcium in it that the BC Government just marks it down as "negligible".

Boiled bone soup 1/2 cup negligible

http://www.niagaramedicalgroup.com/images/new_folder/calcium_and_vitd.pdf

If a person on AEDs develops depression, they are given an SSRI and told that depression frequently happens in people with epilepsy. <sympathetic pat on the hand>.

The problem is that all of these things can be direct side effects of the AED but they don't get recorded as such and the patient is often not made aware of the connection, they are just seen as "other medical conditions the same patient happened to have".

I've never heard of them not getting recorded. I know that both pharmaceutical companies & the government are very interested. For those in the US herre is The FDAs medwatch that asks people to report undocumented adverse & side-effects. http://www.fda.gov/Safety/MedWatch/
 
You have to realize that if someone develops osteopenia due to a medication then it is possible that the problem is with absorption in which case no matter how much one ingests, it will not help.
We've already had this discussion. With severe malabsorption syndromes such as pernicious anemia, you can't just throw more vitamin B12 at it in the form of spinach. But when one is absorbing some but not all of any given nutrient, ingesting more of it can only help. And if one is being over medicated, reducing the thing that is causing the malabsorption, the meds, could help.

Also, be aware that bone broth has so little calcium in it that the BC Government just marks it down as "negligible".
http://www.niagaramedicalgroup.com/images/new_folder/calcium_and_vitd.pdf
Whoever made that bone broth they tested obviously didn't know how to make it well. It requires the addition of either vinegar or lemon or lime juice to the broth to get the minerals to to be released in the cooking process. It also requires the patients to let it cook for a couple of days. I would refer anyone who wants to learn about how to make bone broth the right way to the book Nourishing Traditions by Sally Fallon. http://www.westonaprice.org/health-topics/broth-is-beautiful/ In your link they are talking about 1/2 cup of "boiled bone soup". That is not the same thing as slow cooked broth.

But what does any of this have to do with the question Jen asked? She has stated that she doesn't have any such side effects. I let her thread be after that. If you're posting to help her, great. But if you'e just taking an opportunity to poke at me, please don't.
 
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Sorry you feel so picked on Aloha. I'm just trying to point out that we shouldn't depend on old misproven wives tales whether they have vinegar, lime juice or not. If we're going to make claims they should be accurate or someone could get hurt.

The Bone Broth Myth.

That doesn't even take into consideration the studies that found bone broth made from organic chickens is shown to have lead in it.
A small, blinded, controlled study of lead concentrations in three different types of organic chicken broth showed that such broths do indeed contain several times the lead concentration of the water with which the broth is made. In particular, broth made from skin and cartilage taken off the bone once the chicken had been cooked with the bones in situ, and chicken-bone broth, were both found to have markedly high lead concentrations, of 9.5 and 7.01 μg L(-1), respectively (compared with a control value for tap water treated in the same way of 0.89 μg L(-1)). In view of the dangers of lead consumption to the human body, we recommend that doctors and nutritionists take the risk of lead contamination into consideration when advising patients about bone broth diets.
http://www.ncbi.nlm.nih.gov/pubmed/23375414

Besides, if you'd read the BC health files you'd see that there are so many more food with much higher levels of calcium that it'd be silly to use bone broth.

As for the absorption issue, that assumes that someone is absorbing a small amount & that it is large enough that taking more calcium will make a difference. Personally I think a doctor would be more familiar with such problems. Mine said that supplementing when absorption is the problem isn't very helpful.

I know you like to tell me how I"m going off topic when you're contradicted but you brought up the topic of bone broth for Calcium,(which has nothing to do with Jens question) not me. Please stop going off topic & blaming others for it.
 
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Hi Jen,
Yes, I think that "less is more" can definitely apply to seizures meds. i think this has to do with the side effects.
Personal example. I take phenobarbitol which is a central nervous system depressant. That, in excess, can depress respiration at night leading to the "Central" kind of sleep apnea which can cause nocturnal seizures. (working on getting off that med).

Lots of meds can have side effects such as weight gain, thyroid disruption, blood sugar dis-regulation, nutrient malabsorption, etc. All of those can have a downward spiral effect on metabolism, weight, and general health. I don't have a scientific paper to say that general health is good for neurological health but it seems intuitive to me.


My next door neighbor and good friend is retired from a lucrative career in the pharmaceutical industry developing new drugs for some very large corporations. He says that the industry standard practice when determining what should be the officially recommended dosage is to draw the line so that 90% of the population at large will be getting as much or more than they need at this dose.

People vary widely in how they metabolize any given med due to lots of factors such as age, gender, activity level, etc, but if 90% are getting enough *or more*, then that means a lot of people are being over-medicated.

The trick is finding where you are within that 90%.

A great post AB
I had an appointment with my daughters neuro this month, the key word he mentions with drug dose is the metabolic rate (slow or fast) of an individual besides body weight calculations.
 
If a person on AEDs tests as having hypothyroid they are not going to be told to reduce the dose of the AED and see how that works, they are going to be handed some Synthoid
.

And the same for those who don't take any AEDs. For some, thyroid problems are hereditary. Both my sisters, my mother and my daughter all suffer from hypothyroidism and we all take Synthroid, but I'm the only one with E.

If a person on AEDs develops depression, they are given an SSRI and told that depression frequently happens in people with epilepsy. <sympathetic pat on the hand>.

If a person with epilepsy develops depression, they need to see an experienced neuropsychiatrist!! Depression DOES go hand in hand with E, depending on where in the brain the seizures originate. And SSRIs don't always work for those of us suffering from depression AND E!

The problem is that all of these things can be direct side effects of the AED but they don't get recorded as such and the patient is often not made aware of the connection, they are just seen as "other medical conditions the same patient happened to have"
.
NO! This is not THE PROBLEM! Maybe the drugs are some of the problem, but not THE problem. There are numerous problems;

1)where the seizures originate from
2)types of seizure(s)
3)hormonal factors
4)other health problems that can make the AEDs fluctuate (like diabetes, another hormonal issue)
 
Like I said, I don't have any side effects such as you are mentioning. So, back to my original post: Is it possible to have better seizure control on a lower dose of a medication than at a higher dose? . . . I am interested in personal experiences but particularly in medical-based articles anyone has found pertaining to this.
Thanks in advance!

Go to this website:
http://www.epilepsy.com/learn/treat...re-and-epilepsy-medicines/finding-best-dosage

How do I know what dose of medicine is best?

Every person is different and the dose of medicine they need will depend on many factors. The ‘best dose’ is the one that controls seizures with the least amount of side effects. When a drug is tested, the Food and Drug Administration (FDA) approves a dosage range, or how much a person should be given of each drug. Yet, this is just a guide that the doctor uses to find the best dose for each person. Some things that affect the ‘best dose’:

~The individual medicine and how it works: Some medicines need to be given in higher doses than others. Some work best at low doses.


~A person’s age and weight: Older people often need lower doses than younger adults. Children’s bodies break down medicines differently too, depending on their age.
 
Sorry you feel so picked on Aloha. I'm just trying to point out that we shouldn't depend on old misproven wives tales whether they have vinegar, lime juice or not. If we're going to make claims they should be accurate or someone could get hurt.

The Bone Broth Myth.
I didn't say picked on, I said poked at. Something that you, as a moderator, should be above doing. And, someone is going to get hurt if they drink bone broth? Really?
The "study" you are quoting above traces back to one guy, who just happens to run a company that sells supplements, who is a "reader of Alive magazine" and so sent in his own "data" complete with a link to his company in an "article". And it turns out he made the bone broth in the pressure cooker to speed it up. You can't rush this process. So he tells people bone broth has minimal nutrients in a magazine for health conscious people and hands them his website link to buy some supplements at the same time. That is not science. That is marketing.

That doesn't even take into consideration the studies that found bone broth made from organic chickens is shown to have lead in it.
http://www.ncbi.nlm.nih.gov/pubmed/23375414
All that says is that animals concentrate whatever is in their environment in their bones. All the more reason to get your animals from a lead free environment. And "organic" does not mean free range. Who know what lead was in the pipes or the paint where those chickens were confined.

Besides, if you'd read the BC health files you'd see that there are so many more food with much higher levels of calcium that it'd be silly to use bone broth.
Did I ever say bone broth was the only and/or best source of calcium? And, bone health is not all about calcium.

I know you like to tell me how I"m going off topic when you're contradicted but you brought up the topic of bone broth for Calcium,(which has nothing to do with Jens question) not me. Please stop going off topic & blaming others for it.
Oh Eric, give it a rest. I was talking about nutrients in general which was relevant to Jen's question until she stated she had no such problems. At which point I dropped it. You kept at me about bone broth with dubious references that prove nothing. Was it really to "keep someone from getting hurt" or was it to have poke at me?

Cint

And the same for those who don't take any AEDs. For some, thyroid problems are hereditary. Both my sisters, my mother and my daughter all suffer from hypothyroidism and we all take Synthroid, but I'm the only one with E.
I never said AEDs were the only thing that leads to thyroid problems.


If a person with epilepsy develops depression, they need to see an experienced neuropsychiatrist!! Depression DOES go hand in hand with E, depending on where in the brain the seizures originate. And SSRIs don't always work for those of us suffering from depression AND E!
I agree with everything you said. AEDs can also create and/or worsen issues such as depression and suicidal ideation. The package insert says so, not just me.

.
NO! This is not THE PROBLEM! Maybe the drugs are some of the problem, but not THE problem. There are numerous problems;

1)where the seizures originate from
2)types of seizure(s)
3)hormonal factors
4)other health problems that can make the AEDs fluctuate (like diabetes, another hormonal issue)
For the record, I never once said that AEDS are the one and only culprit. Please don't put words in my mouth.



To Jen,

All I said that I hoped might be of help to you was that "less is more" could very well be the case with regard to your medication because of side effects such as nutrient malabsorption which I don't think anyone is denying is a real issue with many AEDs.
All the rest of this is noise. I wish you well in finding the optimal solution for you.
 
.

And the same for those who don't take any AEDs. For some, thyroid problems are hereditary. Both my sisters, my mother and my daughter all suffer from hypothyroidism and we all take Synthroid, but I'm the only one with E.



If a person with epilepsy develops depression, they need to see an experienced neuropsychiatrist!! Depression DOES go hand in hand with E, depending on where in the brain the seizures originate. And SSRIs don't always work for those of us suffering from depression AND E!

.
NO! This is not THE PROBLEM! Maybe the drugs are some of the problem, but not THE problem. There are numerous problems;

1)where the seizures originate from
2)types of seizure(s)
3)hormonal factors
4)other health problems that can make the AEDs fluctuate (like diabetes, another hormonal issue)
The drugs we are on are CNS depressants which cause our problems, and not everyone is affected by depression but I have been and have been by by more a dozen drugs. Epilepsy drugs are also used for other things such as bi-polar.I have been able to get rid of side effects of most of my drugs. I seem to stupify my docs that I can remember things.
Belinda 5000
 
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.

And the same for those who don't take any AEDs. For some, thyroid problems are hereditary. Both my sisters, my mother and my daughter all suffer from hypothyroidism and we all take Synthroid, but I'm the only one with E.



If a person with epilepsy develops depression, they need to see an experienced neuropsychiatrist!! Depression DOES go hand in hand with E, depending on where in the brain the seizures originate. And SSRIs don't always work for those of us suffering from depression AND E!

.
NO! This is not THE PROBLEM! Maybe the drugs are some of the problem, but not THE problem. There are numerous problems;

1)where the seizures originate from
2)types of seizure(s)
3)hormonal factors
4)other health problems that can make the AEDs fluctuate (like diabetes, another hormonal issue)

Cint
You have highlighted some excellent points.
My question ATM is about the metabolic stuff. Ive been reading up on the differences in hyperthyroidism and hypothyroidism. The thyroid produces a hormone called thyroxine which in simple terms aims to regulate the thyroid function.
Medications work on people differently and its about how fast or how slow ones BMR ( Basal Metabolic Rate) from the moment of ingestion to excretion.

The Neuro I spoke to earlier this month stated that how fast or how slow ones metabolic rate does determine how meds affect the person and level of dose to what works most efficiently.

However I do challenge and try to learn about the other variables like other meds and its interactions, is someone on a crappy diet, mood swings etc will impact on the general health.

So, what I am asking is ..
have you ever had your BMR tested?
 
I didn't say picked on, I said poked at. Something that you, as a moderator, should be above doing. And, someone is going to get hurt if they drink bone broth? Really?
The "study" you are quoting above traces back to one guy, who just happens to run a company that sells supplements, who is a "reader of Alive magazine" and so sent in his own "data" complete with a link to his company in an "article". And it turns out he made the bone broth in the pressure cooker to speed it up. You can't rush this process. So he tells people bone broth has minimal nutrients in a magazine for health conscious people and hands them his website link to buy some supplements at the same time. That is not science. That is marketing.

All that says is that animals concentrate whatever is in their environment in their bones. All the more reason to get your animals from a lead free environment. And "organic" does not mean free range. Who know what lead was in the pipes or the paint where those chickens were confined.

Did I ever say bone broth was the only and/or best source of calcium? And, bone health is not all about calcium.

Oh Eric, give it a rest. I was talking about nutrients in general which was relevant to Jen's question until she stated she had no such problems. At which point I dropped it. You kept at me about bone broth with dubious references that prove nothing. Was it really to "keep someone from getting hurt" or was it to have poke at me?

Cint

I never said AEDs were the only thing that leads to thyroid problems.


I agree with everything you said. AEDs can also create and/or worsen issues such as depression and suicidal ideation. The package insert says so, not just me.

.
For the record, I never once said that AEDS are the one and only culprit. Please don't put words in my mouth.



To Jen,

All I said that I hoped might be of help to you was that "less is more" could very well be the case with regard to your medication because of side effects such as nutrient malabsorption which I don't think anyone is denying is a real issue with many AEDs.
All the rest of this is noise. I wish you well in finding the optimal solution for you.

Hi Aloha
I don't agree with Epileric and Ill leave it at that.

Just something I found interesting with the stuff that the medical nutritionist stated
about nutrients.
DOM (Diagnostic Orthomolecular Medicine ) simplifies the generation of symptoms into 2 categories. Either the nutrient is NOT THERE OR ITS INEFFECTIVE.
The bottom line ..
* when the nutrient is not there its impacted by the following factors:

1. something is low in
a. environment
b. food
c. poor absorption
d.pre cellular wastage
e. channelopathy

The nutrient is rendered ineffective via:
a blockade. The nutrient is blocked.
That's where two things require consideration:
1. TOXIC ELEMENTS
2. DRUGS
 
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Recently when I had my blood levels done they had gotten extremely high. The doc explained that Carbamazapine (Tegretol), like most drugs is effective at a certain blood level. To little & it has no curative effect, too much & it can increase seizures.

We went through hell with Tegretol.
My daughter was miserable and no quality of life. I documented all her seizure activity and it increased from twice weekly pre Tegretol to just about every day. She had trouble sleeping and she began with a new disturbing behaviour hand and head banging her bedroom wall at night. I video taped this every night and showed this to the Neuro.
My Husband and I gave it 4 weeks of this torture. The Neuro never mentioned the possibility of MORE seizure activity. WE slowly did the process of weaning this crap drug.

She also gained weight, no other variables was different, a healthy diet and no changes in amount of food.

Yes this drug has been around for years, yes its reliable for some people, but no I detest it, as it gave no quality of life.
Documention and video evidence will show undistputable evidence over just the verbal spitting the dummy.
 
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