I've been slowly increasing Vimpat, 50 mg at time, every 6 weeks. I'm now at 250 mg with a goal of 400 mg. Once I got to the 100 mg point, after every increase I've gone through a period of about a week with eye sensitivity and mild dizziness starting about 2 weeks after the increase. After every increase once reaching the 100 mg. stage I began to notice small improvements in seizures. The last increase was 5 weeks ago, and no side effects and no improvements. It was like I wasn't taking any added medication at all. For me and how I typically have reacted to any of my seizure medication increases, this is unusual. What does this lack of improvement and side effects mean? Have I "adapted to" or become resistant to the medication? My seizures have been defined as refractory and medication resistant, but like I say I have been noticing small improvements with each Vimpat increase up until now.
Medication increase had no benefit
- Thread starter masterjen
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masterjen
The eye sensitivity did not last long for me, I found the nightmares were the worst for me but I must agree you do begin to notice small improvements or feel them even. I am not sure how I feel about vimpat and I reached 600 mg for me it was the lack of breath which was the main reason I wanted off them.
The eye sensitivity did not last long for me, I found the nightmares were the worst for me but I must agree you do begin to notice small improvements or feel them even. I am not sure how I feel about vimpat and I reached 600 mg for me it was the lack of breath which was the main reason I wanted off them.
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The neuro may think that 400mg is a good dose for you to be on so that's why he's been increasing it. With meds you usually have to work up to the dose that you are to be on, you can't just start taking it right from the start. When you reach the 400mg you should know for sure how it's going to work for you.
Not having more seizures is better than having more so it might be doing some good. Your body might be becoming used to the medicine being in it so that's why you aren't having side effects now.
I've been on a good bit of different meds and have gone through the same thing. Some I had to stop taking because they were doing absolutely doing no good or the side effects were too bad. But you aren't going to know this for sure until you get to the dose that he wants you on and you've been on it for a while.
Not having more seizures is better than having more so it might be doing some good. Your body might be becoming used to the medicine being in it so that's why you aren't having side effects now.
I've been on a good bit of different meds and have gone through the same thing. Some I had to stop taking because they were doing absolutely doing no good or the side effects were too bad. But you aren't going to know this for sure until you get to the dose that he wants you on and you've been on it for a while.
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if you don't feel that going up to the full 400mg will make a difference (i.e. if your seizures are controlled at a lower dose), you should discuss it with your neuro. The neuro may want you to have a "safety net" -- a dose high enough to keep you protected in the event of unusual triggering circumstances; or, he may just be wrong about the appropriate therapeutic dose.
I've had the latter experience, where I [successfully] remained at a dose lower than my neuro had targeted.
I've had the latter experience, where I [successfully] remained at a dose lower than my neuro had targeted.
masterjen
"medication resistant", has any of your docs recommended diet to you (looking for triggers)?
we seen seizure increase on med increase in my Son...so tapering down on meds and trying restricted diet and much more….and we are seeing healing and no increase of seizure activity…..
"medication resistant", has any of your docs recommended diet to you (looking for triggers)?
we seen seizure increase on med increase in my Son...so tapering down on meds and trying restricted diet and much more….and we are seeing healing and no increase of seizure activity…..
Chaz1: interestingly there were suspicions of a connection to gluten, since I was diagnosed with Celiac a matter of months before my first obvious seizures but while eating a strict gluten free diet has put the intestinal issues into remission, if anything the seizures have become worse as my insides healed. I'm also being investigated for a possible metabolic disorder - a few tests negative so far and others like the MRS still pending. Due to issues with pancreas because of permanent damage from Celiac, fat, carbohydrate and protein balance in my diet has to be carefully balanced. If you'd care to share the dietary approach with your son, I'm all ears and open to possibilities I can try!!
hello masterjen,
one type on google and there is so much info on the epilepsy gluten connection..
we are working on over all healing and were pretty surprised that the results of tests confirmed how hard the meds are on his liver...BUT, hospital results came back to say, all fine vs. naturopath confirming via private blood tests that ALL was far from fine…..both naturopath and acupuncturist seen it straight off the bat, liver and kidneys is not functioning well….makes u wonder and well that lead us to look further….
So, we working with a naturopath, overall healing, working on metabolism. My Son (27) also sees an acupuncturist, is in Neurofeedback/bio-feedback (braining training and we are seeing amazing results in this therapy)
the diet my Son was on was temporary and at same time he begun trace element therapy, so his diet was what not to eat…if u interested can tell u what was allowed..
after we built his trace elements, bowels will be able to again to absorb enough vitamins and minerals from food, becasue if this not corrected you could eat a rolls royce every day and it would just flush out without your body absorbing the goodess..
NO to all of below
coffee/tea (no black, green only herbal tea)
milk,
fruit juices
any drink with gas
alcohol
sugar
honey
chocolate
mayo or ketchup
beans of any kind
white bread
heavy brown breads
pasta (any form)
coleslaw
nothing deep fried
margarines (NONE)
Pig meat (strict NO)
Cold meats
fruit (allowed apple and pears, berries)
raisins, dried fruits, figs
cow cheese
cow milk
yogurt with fruit
yogurt drinks
puddings
packet soup
so now he has completed above, he is doing Chinese herb treatment, to heal the brain and continue the healing…please God.
my Son in past 4 months has a 33.3% reduction in med (when doc wanted to add another) and even though this decrease, no increase in seizure activity…
one type on google and there is so much info on the epilepsy gluten connection..
we are working on over all healing and were pretty surprised that the results of tests confirmed how hard the meds are on his liver...BUT, hospital results came back to say, all fine vs. naturopath confirming via private blood tests that ALL was far from fine…..both naturopath and acupuncturist seen it straight off the bat, liver and kidneys is not functioning well….makes u wonder and well that lead us to look further….
So, we working with a naturopath, overall healing, working on metabolism. My Son (27) also sees an acupuncturist, is in Neurofeedback/bio-feedback (braining training and we are seeing amazing results in this therapy)
the diet my Son was on was temporary and at same time he begun trace element therapy, so his diet was what not to eat…if u interested can tell u what was allowed..
after we built his trace elements, bowels will be able to again to absorb enough vitamins and minerals from food, becasue if this not corrected you could eat a rolls royce every day and it would just flush out without your body absorbing the goodess..
NO to all of below
coffee/tea (no black, green only herbal tea)
milk,
fruit juices
any drink with gas
alcohol
sugar
honey
chocolate
mayo or ketchup
beans of any kind
white bread
heavy brown breads
pasta (any form)
coleslaw
nothing deep fried
margarines (NONE)
Pig meat (strict NO)
Cold meats
fruit (allowed apple and pears, berries)
raisins, dried fruits, figs
cow cheese
cow milk
yogurt with fruit
yogurt drinks
puddings
packet soup
so now he has completed above, he is doing Chinese herb treatment, to heal the brain and continue the healing…please God.
my Son in past 4 months has a 33.3% reduction in med (when doc wanted to add another) and even though this decrease, no increase in seizure activity…
Thank you for your posts, Chaz. It would have been interesting to know if your son did in fact have gluten intolerance or even celiac.
I'm confused about how to approach things now, but I think for now I will wait to see the results of the MRS at the end of August (the final test to determine if there is anything metabolic going on), and if so that in itself may be extremely helpful. Tests are also "equivocal" (I hate that word) for mitochondrial issues.
For me it comes down to an issue of who to trust when it comes to the naturopathic and alternative medicine world. How did you ever begin to "take the plunge" with your son?
I'm confused about how to approach things now, but I think for now I will wait to see the results of the MRS at the end of August (the final test to determine if there is anything metabolic going on), and if so that in itself may be extremely helpful. Tests are also "equivocal" (I hate that word) for mitochondrial issues.
For me it comes down to an issue of who to trust when it comes to the naturopathic and alternative medicine world. How did you ever begin to "take the plunge" with your son?
no, no gluten intolerance, but reduction was needed for overall healing...
how to, pin point and research a few, local, research them well and their therapy approaches and if u like, then visit to see if u feel comfortable with the people and the surroundings. And the LOGIC.
his Neurofeedback/bio-feedback is in a super old, unique building of the city…it’s like stepping back in time..
his naturopath, small, cozy and comfortable, and in simply stunning location
acupuncturist, she does it from home…..nothing fancy, but he LOVES it
for healing it is SUPER important u feel relaxed, and that you want to go
his
how to, pin point and research a few, local, research them well and their therapy approaches and if u like, then visit to see if u feel comfortable with the people and the surroundings. And the LOGIC.
his Neurofeedback/bio-feedback is in a super old, unique building of the city…it’s like stepping back in time..
his naturopath, small, cozy and comfortable, and in simply stunning location
acupuncturist, she does it from home…..nothing fancy, but he LOVES it
for healing it is SUPER important u feel relaxed, and that you want to go
his