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New Breakout Seizures after 15 years? why?

Hey folks!

My boyfriend is 28 years old and had his first seizure when he was 13. His diagnosis was a combined partial seizure and mild stroke - both at the same time. He also remembers having one "aura" before this event when he was 12 but had had nothing before that (no seizures when he was a child). After this first seizure, he had various MRI's, angiograms, cat scans, EKGs, EEGs, etc., as well which showed odd electrical activity on the right side of his brain, as well as white matter on the top of his brain.

Anyway, since that event, he's been on various drugs like Dilatin, Phenobarbital, Tegretol, and Tegretol XR.  Most of his youth, he had occasional auras, but never a seizure since his initial one back when he was 13.  He has had only auras and migraines. (Not sure if the meds he was on prevented seizures or not). Throughout college he drank and stayed up late, everything that you could imagine would be a seizure trigger he did and still he had no seizures - just auras occasionally. 

He has been on Trileptal for the past several years, 1800 mgs.  He tried the generic  for a few months last year bc the cost was so much less than the brand, and he had his first set of break-through seizures while on the generic - after just 3 months of being on it. So he immediately switched back to the brand trileptal and had another seizure in Dec last year. I forgot to mention he has Complex Partial seizures, and his recent seizures have all been both generalized tonic-clonic and, after that one is over, back to complex partial til it's all over. So then he was placed on 2100 mgs of Trileptal, and he had another break through seizure in Jan of this year. So now the Dr. has him on 2100 mgs of Trileptal and 2000 mgs of Keppra XR in hopes of weaning him off of Trileptal.

I think it may be a possibility that the drug simply wore off but I have been doing some reaserach on food triggered seizures and Soy and Gluten were brought to my attnetion. My boyfriend starting drinking soy milk around the time of his first breakthrough seizure. I told him to stop drinking it after his last seizure and his headaches stopped which was a good sign. Celiac was a thought but his blood test came back negative so i think we might go to an allergist.

Basically my question is: Has anyone had the same experiences or any info on Soy triggereing seizures in people with epilepsy? 

He never had a seizure immediately after drinking soy milk so im not sure if that has anything to do with it. Any info would be much appreciated!

 

Thanks!!

Comments

Re: New Breakout Seizures after 15 years? why?

Hi latriz!  My bet would be that the med wore off..It's not unusual, to be honest.   In fact, I just had to switch to a new med because my phenobarb just wasnt' working any more.  Also, if your bf's type of seizure changed, that would effect whether or not the med was appropriate.  Also, another thing to remember is that some researchers and doctors are considering auras as seizures, only as a milder form.  So if he was having auras, then he was having seizures that weren't being controlled.  This can cause what is known as kindling.  A state where the brain teaches itself to respond to stimuli by seizure.  These seizures can increase in intensity and number from previous seizures.  Also, please understand that just because he started out with one type of seizure does not mean that he cannot develop any other types of seizures.

Re: New Breakout Seizures after 15 years? why?

hi, katruz,

from the best that i know,  triliptal was no longer effective.   changing the med is probably the the most prudent.  seizures change is some people. for no particular reason.  it is the same reason that people start having seizures for no reason.  most people never know why.  i think the stats are around 70%.  Most people also have no abmormal tests.  i hope for good results with the new med.  rikk

Re: New Breakout Seizures after 15 years? why?

Soy is a very common seizure trigger - women (and girls who have gone through puberty) with epilepsy are encouraged to avoid eating any amount of soy at all. Since males don't typically have catamenial epilepsy, they are rarely given this warning. Soy is estrogen, and having a high level of estrogen compared to progesterone in your body, makes your brain receptive to seizures. Drinking soy milk is an invitation to seizures in the same way that going to a disco ball for hours, even when you aren't photosensitive, is. He was probably never warned because A) he's male and so is likely to have a decent amount of progestorone and B) its really rare to drink soy milk.

If you read the ingredients lists of packages, you'll soon find that you ingest alot more soy daily than you realize. One of the first things I discovered when my neuro told me not to stay away from soy was that finding packaged food that didn't have soy added to it was nearly impossible - I know of 4 things I can have right now, and I have to be very careful that I don't buy similar products in similar packaging made by different brands, or I'll have a seizure when I eat them (but I also have a hormonal imbalance where my body doesn't produce any progesterone at times, so i'm more sensitive to soy than your average person with epilepsy)

 The other things to watch out for are salt and caffeine. If he's having seizures, he should not be having any caffeine at all. The salt issue really depends alot on his body and his diet. If he's eating a typical US diet (ie packaged food), he should not add salt to anything at all. if He's eating a seizure diet, he should be adding salt. It should always be sea salt, not table salt. Salt causes water retention, which in turn increases the electrolytes in your body - these all make the environment more conducive to seizures. However, depending on his physiology, he may benefit from adding more salt. So I'd look at what he's doing now and try the opposite for a while - if he's eating a high sodium diet, cut back on the salt and see if it helps. if its low sodium, add a bit more, and see if it helps. Also factor in how frequently he urinates. People with epilepsy who are actively having seizures should urinate more frequently than a healthy adult (to avoid the electrolyte buildup) - this is why those with severely uncontrolled epilepsy are told to reduce or avoid salt. If he's only going to the bathroom 2 or 3 times a day, he should cut back on the amount of salt he has.

 The other thing I know food wise, is also related to water retention, and again its for women (in case you haven't guessed by now I know all this because I'm a women who has intractable epilepsy). When women have catamenial seizures, they are to reduce the amount of fluids they consume. This is because the seizures are caused by their bodies retaining water and not being able to expel it - remember that old kotex commercial where the women holds up the pitcher of water and says "the more you drink the less water you retain." It unfortunately doesn't apply to those of us with catamenial seizures. The more water we drink, the more water we retain. So if your boyfriends issue is hormonal, and it sounds very likely it is given the timing of the seizures with drinking the soy milk, he may benefit from reducing the amount of liquids he consumes on days he has seizures, or will be exposed to seizure triggers. However, I can't comment on the similarities between men's and women's bodies retaining water in response to hormones.

 One thing you should make sure he gets down is have is hydroxyprogesterone and estrogen levels tested. If he's drinking soy milk, he will have elevated levels of estrogen, and so he has a problem where is producing a reduced level of testosterone, he is putting himself in alot of danger by drinking soy milk, or really by eating anything with soy in it. You may have to go to an endocrinologist to get the test. The good news is that an appointment with endocrinologist is cheaper than an appointment with neurologist, and if there is a hormonal imbalance he will need to be seen by an endocrinologist. Alot of seizure medicines effect hormones so even if he didn't have a hormonal imbalance before he was on seizure meds, he may have one as a result of taking them over the last several years

Re: New Breakout Seizures after 15 years? why?

Hi

I am confused myself I am 38 and had no seizures then all of a sudden after 15 years had a sezuire.  I suffer from tonic clonic sezuires.  I take topiramate and liamictol and rivotril.  It was a shock to the system.  I think it was a build up immunity to the drugs that I have been on so long.  I have been told the topiramate are not the best to control tonic clonic seizures though.

My hubby 48 had his first seizure for no apparent reasons and had various tests still awaiting results