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Date Joined Sep 2013
Total Posts : 1
Posted 9/21/2013 5:08 PM (GMT -6)
Hi there, I'm new to the forum, and would greatly appreciate any and all advice on my situation. Please bear with me as I tell the longwinded story of my travails with epilepsy, from my diagnosis to now, including what medications I’ve taken over the years. Truly, any input you have on whether or not my brain chemistry may be permanently altered, and any suggestions as to where I should go from here, are very, very much appreciated.
I am now 26, and was diagnosed with epilepsy when I was 14. I took Carbatrol and Keppra upon being diagnosed, and it kept my partial complex seizures at bay for a couple of years. When my neurologist tried tapering me off when I was 16, however, the seizures came back, and my neurologist and I subsequently couldn't get the same dosages to do the trick again. Fast forward, long story short, when I was 20 and in college, I just tapered myself off of the Carbatrol and Lamictal that I was then taking -- a combination that was making me lethargic and depressed -- and just accepted the fact that I would have a 10-20 second episode of "zoning out" in the morning, every other day or so. Tapering off in no way worsened my seizures. If anything, there was minimal improvement, as I just felt overall healthier.
Note that I had never had a grand mal seizure, or lost my consciousness, during a seizure, at this point in my story. I would simply be rendered unable to respond to external stimuli for less than a minute, and would be able to remember the entire episode in hindsight. And for four years, I just dealt with having 10-20 second episodes of impaired consciousness every other day or so. No big deal.
Two years ago, when I was 24, I decided to move to New York, where I worked as a freelance writer. The stress of that situation turned out to be less than ideal for my epilepsy, and four months after moving to the city, I had my first-ever grand mal seizure in November 2011 -- the day after my second night in a row of drinking a moderate amount with friends -- and upon waking up to loads of work-related stress.
December 2011 and January 2012 went by all right -- I had a few seizures more similar to the sort that I was used to from before, but with my consciousness more impaired than it had been, though not totally gone. However, these were such infrequent events that I didn’t think much of it.
For three weeks in February 2012, I began drinking Bolthouse Farms Green Goodness -- a nutritious healthfood drink packed with vitamins -- every morning, and didn't have any seizures at all -- not even the milder kind I was used to having! However, for Mardi Gras later in February of 2012, I did something idiotic -- I went drinking two nights in a row again. And, lo and behold, the next day -- which was stress-filled with work I had to catch up on -- I had a grand mal seizure. Which my flatmate witnessed, and so she called 911.
I interpreted my ending up in the ER was perhaps a wake-up call to start taking meds again, and so ended up seeing a neurologist, and was prescribed 500-1000 mg Keppra/day. I picked up some generic Keppra at the pharmacy, and one week after beginning to take 500 mg/day, had an atypical seizure. I was at the coffee shop, and was told that I "passed out" upon taking my first sip of coffee.
I took the generic Keppra -- upping my dose to 1000 mg -- for another couple of weeks. In hindsight, I see that the keppra most likely CAUSED that coffee-shop seizure that I had. After another two weeks, I tapered myself off the generic Keppra because it made me feel miserable in several ways. I was bloated, gassy, lethargic, and unhappy.
I subsequently went in for an EEG at NYU med center. I was there prescribed Zonegran, which I took for a few months, from April - June 2012. It didn't have any noticeable effect on my seizures. By this point, in May, I was having about
three consciousness-losing seizures a day -- unlike anything I had ever experienced before. I decided to leave the city and stay with my family so that I could recover. I was finally given a Klonopin prescript
ion in July 2012, so that I could take it on an as-needed basis to calm my brain down either when I needed to get to sleep or simply have a day that was not anxiety-ridden.
I took the Klonopin every few days, and began seeing a new neurologist back in my hometown. He got me off of the Zonegran and prescribed me Dilantin, which made me feel like a zombie. I took the Dilantin for fall of 2012 and thensome -- August - October 2012, really -- before I realized that I would rather just be having seizures than feel so absolutely static and lifeless in my energy. It didn't even do away with all of my seizures, anyway -- I wasn't having them every day, but did have one basically every few days. I also had to take melatonin -- recommended by my doctor -- to get to sleep at night while on the Dilantin.
I got off the Dilatin in November, and tried taking Carbatrol again, upon this second neurologist’s suggestion, for the rest of 2012, to no avail. In November, I began taking the Klonopin more regularly, as it did seem to keep my seizures somewhat at bay.
By January 2013, I was no longer taking the Carbatrol, as it was not having any noticeable effect. At this point, I was taking .25 mg klonopin 2x/day.
In February, I moved to Portland. I noticed that I could only ever get 6 hours of sleep while taking the Klonopin, and knew that that couldn’t be healthy, so I decreased my dosage over the next week, and quit taking it. I thought that since I had only been taking it for a month and a half on such a regular basis, that there would be no harm in tapering off in the span of a week. Upon seeing how it affected my sleep, I in fact thought it best to cease any and all relations with that drug ASAP, the sooner the better.
Ever since quitting the Klonopin, I’ve been experiencing benzodiazepine withdrawal. Not only did my seizures increase in frequency, but my menstrual cycle disappeared. (These are known side-effects of benzodiazepine withdrawal. While it gives me hope that I am still just experiencing benzo withdrawal -- which is known to last for quite a while, in some cases -- there were obviously more drugs involved than just the Klonopin. The problem obviously originated, and had gotten worse, before it even entered the scene.)
In telling my story, I'll also share my current concerns:
Have I permanently worsened my epilepsy by taking all these drugs in the span of just a year? I obviously should have just stopped drinking after that first grand mal that I had; however, I had never, ever seen a correlation between drinking and seizures before, and thought that it was just a fluke of some sort. Hindsight is 20/20.
Specifically, did the generic keppra -- which has been purported to worsen seizures in cases other than mine, my research reveals -- permanently alter my brain? After all, it was ONE WEEK after beginning to take it that I saw a definite change in my epilsepy. That seizure at the coffee shop -- being told that I had just randomly “fainted” -- was entirely new. Not hangover-induced... but occurred upon taking ONE SIP of coffee. And, I was drinking coffee every single day at this point in time.
Could the generic Keppra still be in my system after all this time?
Or, could I have just taken so many drugs over the span of that year, that somehow there is still some sort of combined residue in my system, even six months after getting off the last of them?
Could it be that introducing so many pharmaceuticals to my system over the span of just a year screwed me up? Could these effects be permanent?
Is this just a matter of aging? After all, I did have those slightly more severe seizures during the winter of 2011/12, AFTER that first alcohol/hangover-induced grand mal the previous fall, and BEFORE taking any medications. They were relatively mild, but still worse than what I had ever experienced before moving to New York. As in, I couldn’t remember the entirety of the episodes, but they were still just partial complex seizures.
Ever since February of this year, I have been pursuing alternative treatments. Naturopathic doctors have been helping me to detox. I have been pursuing acupuncture, to regain balance to my system, as well, and I do see myself getting better -- I went three days in a row in June without having a seizure, and my period returned in July... it seems that with every new month, I go more and more days seizure-free (last month was a grand total of seven). I seem to go two days in a row without a seizure, every two weeks, at this point in time (as of September 2013).
At the end of July, I also began pursuing neurofeedback therapy, and have yet to see whether or not that will bring any real improvements.
At this point in time, I have about
two seizures a day, average. They aren’t grand mals, but I do lose my consciousness and am unable to remember the episodes. They typically last about
a minute, and I am usually post-ictal for a couple of minutes afterward.
An immense THANK YOU is due if you read the entirety of this post, somehow making it this far. Although I see minor, gradual improvements -- which are considered standard for someone going through benzodiazepine withdrawal -- I nonetheless feel desperate and sometimes begin to lose hope, wondering if I’ll ever get through this.
Please, any and all input is very, very much appreciated. ANYTHING helps.
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Date Joined Apr 2013
Total Posts : 10
Posted 10/20/2013 7:10 AM (GMT -6)
Make sure you have not been exposed to any permethrin poisons. Flea powder, insecticides, termidor termite poison... I and my dog were having seizures from exposure to these poisons. I had to take out all the carpet in the house and I and the dog got better. It says right on the box/cans that exposure can cause seizures. Some coffee shops/restaurants get a lot of poison sprayed in the to control ants bugs, etc... it may not have been the coffee, but spray in the coffee shop where ants eat the spilled sugar in the place,, your new home in New York may have a lot of poison sprayed in it to control roaches,, check into this....
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Date Joined Aug 2015
Total Posts : 1
Posted 8/20/2015 9:08 PM (GMT -6)
I'm responding to Laura, I think your name is about
keppra etc. Most of my focus this last year has been on klonozipin, which I had been put on for many years and didn't know why or the horrors that happen with withdrawing from it. I developed seizures from last year of my withdrawal due to mess ups in the phamacy and doctors who knew nothing about
I'm on keppra and klonozopan. I have the same symptoms as you did with one of your meds, bloating, filled with gas, constipation, lethargic, sleeping day and night and feel awful. I don't think that you have permanent brain damage from being on seizure medication and I've not done much research on this. I don't think that those medicines cause permanent brain damage but you might research this. Look at the fact that your seizures have come down so much as you get off seizure medicine.
And yes, if you're getting off k. you'll go through withdrawal but the fact that your seizures get less even with a benzo withdrawal process sure is a telling sign to me. I think you're doing great.
And yes, alcohol can't be taken when you have any seizure disorder. i think it makes it a lot worse and is dangerous. You can look this up also. My demise is coffee and I'm an addict with it and it's also bad for seziures. I have to stop it for a time and see if there's any difference.
So, whatever reason why your seizures are less and maybe it's just years passing and your brain reestablishing normalcy, it's still amazing actually, I feel nothing but positive about
your situation and I will tell you that overstressing or overworking will brink on a seizure and booze. It's got to be a life time taking care of ourselves. And I'm from New York and fear I'll never be able to go back, which saddens me a lot since I used to go back there every summer. I live in TX. and now haven't been able to go back for around 12 years. My issues are not only my brain. A lot else. Good luck to you.
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Date Joined Apr 2013
Total Posts : 10
Posted 8/21/2015 7:39 AM (GMT -6)
I had no success with trileptal. It was causing me to have night seizures. I am taking the minimum dose of Keppra, and believe it may be causing me to have the gas and some bloating, or I may just be getting the older age middle spread. Can't remember how long since I last had a seizure. I have found out I have a low sodium problem. I have to eat massive amounts of salt on everything, so my wife cannot even eat my food, and keep gator aid with me to keep my sodium levels up. Even with all that, I only get two points above the minimum of 135,,, around 137 !! Range is 135 to 145. My wife used to always complain and make me cut down my salt intake,,, That was when my seizures started, and after I got a huge dose of permethrin on my clothing and skin. I still keep away from all permethrin products. I lost my little Boston to old age and congestive heart failure,,, broke my heart. I also only get 6 or 7 hours of sleep a night. I take half a 500MG tablet in the morning and in the afternoon, and one whole 500MG tablet at night of the levetiracetm/keppra... Never had seizures until my wife started cutting down my salt intake, and spreading flea powder all over the place, and washing my clothes in the stuff. I think that trileptal is poison for me too.
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Date Joined Mar 2012
Total Posts : 2
Posted 9/17/2015 12:52 PM (GMT -6)
We all need to understand that seizures and their causes differ in many of us. In general the causes could be numerous which includes, chemical imbalances in our bodies, infections, parasites, heavy metal toxicity, growths or malformed brain tissue, allergies and much more. Infections caused by pathogens can be any where in the body and the pathogens give off a waste product that is toxic and the same goes for parasites. If your immune system can not identify the problem (toxin or pathogen or other issue) it will attack the cell sin your body causing damage. This is the basis that causes numerous disorders.
Doctors fail to properly inform patients about
the drugs they prescribe leaving you on your own to face the side effects. I was once on depakote for seizures which eventually caused weight gains. I researched it and eventually found the it was an endocrine disruptor that caused an imbalance in hormones that controlled appetite and one that caused food to be stored as adipose tissue (fat) There was as large group of people who were all experiencing the same problems but my neurologist denied it.
I gave it up and went back to keppra which i was on only for brief period. Turns out i had an infection from mold exposure that made me sick and caused seizures. My neurologist attributed the seizure to the failure of keppra and then switched me to depakote. So now I'm back on keppra and it is working but there are problems all of you need to know about
it does cause sleepiness which i experience daily but if you remain somewhat active you may be able to fight that off. I also found that by spreading out my dosage during the day the (breaking the pill in half and taking it over the course of the day) will lessen the sleep effects.
Next problem is a serious one. People who have been given large doses of Keppra have horrible sleep issues and other problems but even small doses can cause problems. This drug depletes the following items in your body; B6 B12 D3 K folic acid calcium and magnesium. In addition to that it causes excessive thirst.
Let me give you a sampling of the importance of what you are missing. B vitamin are very important to neurological functions. there are 7 K vitamins but the K2 helps maintain D3 levels and transport calcium to your bones and teeth by activating a protein produced by a cell that maintains bones and teeth. Folic acid is necessary for cellular reproduction. calcium is always available in many foods but without enough and a method of control is a problem that could cause bone loss and teeth issues.
Magnesium has hundreds of uses in the body. it works to maintain cardiac function, is essential for proper sleep so it will stop those horrific nightmares from keppra. It also is essential in maintaining proper calcium levels in your cells. it's really important to note that too much calcium in your cells causes the cell to react to it as a toxin causing an on going immune reaction. We just found that many people with psoriasis have this problem and are going into remission by using D3 K2 magnesium chloride as a liquid applied to the skin for transdermal absorption.
We also found that eliminating as much dairy as possible, especially milk, is important. Millions of people have issues digesting milk proteins and many realized that it was also the cause of a variety of their health issues. I also learned though research and use that taking EFA daily ( i use flax seed oil) and coconut oil ( a teaspoon daily) is very useful. EFA works in many ways but has been effective with dermatitis issues. Coconut oil has a long list but is effective in killing pathogens, it is needed in digestion for fat soluble nutrients and transporting nutrients directly to your cells.
I do supplementation of all the lost nutrients and many more to maintain my health. Intake of folic acid has to be below 2000 mcg or it causes keppra to be ineffective. I'll never be free of all the drug side effects but I can reverse the problems it may cause in the future. keppra also causes a feeling of loss of strength.
topomax is another wonderful drug I took for all of three weeks. It caused anxiety attacks, sleepless nights and had me ask myself how it would feel to jump off the tops of buildings and fly.
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Date Joined Apr 2013
Total Posts : 10
Posted 9/18/2015 11:49 PM (GMT -6)
I also break my pills in half and spread it out over the day. I never had seizures before being exposed to extremely high levels of permethrin, which can cause seizures. My dog even started having them, until we got rid of all the carpet and flea powder... My wife was even washing my clothes in the liquid stuff to make them 'mosquito' proof,,, That and flea powder on my clothes started my seizures. While taking trileptal, I started having night seizures,,, Now, that I got all carpets with the flea powder and off the trileptal on on Keppra, I can't remember when I last had a seizure... years and years... Still don't know if I really need the stuff,,,
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Date Joined Apr 2016
Total Posts : 2
Posted 4/23/2016 1:21 AM (GMT -6)
My seizures are nocturnal but frequent. I remembered them before the surgery and was conscious but now I don't. I went through a year ( with Keppra involved) where I was on atleast 4 different-it was a bad year. I am listed in med records as incurable. Mes will over time lead to grogginess, grogginess, and lack of ability to concentrate and make quick connections. When I learned this was common and not juste, I cried. But without meds I would be dead.@ Keppra didn't ruin you. You need another doctor and need to follow advice....I'm on trileptal and clonazapam.
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