Treatment (medication) for Eating Seizures

[debanks]

Hi All,

I am seriously considering medication for my eating seizures as I want some extra protection against them happening. I am looking forward to driving again but I would like the extra security of my seizure threshold being raised.

My seizures are Generalized, tonic clonic type and have only ever occured after eating bulky meals high in carbs (including large amounts of veg). I usually get a few seconds warning allowing me to lie down and put my dinner down!! I don't know if that means they start partial/complex partial and then progress to generalized. They last 2-3 minutes followed by about an hour sleeping.

My question is can anyone recommend any drugs that could be good for this type of seizure?

Thanks in advance...

DE

 

[LuvMyTwins]

The best thing you can do is see a neurologist that specializes in epilepsy. In the meantime, keep a food journal and maybe that will help with triggers.

 

[debanks]

Thanks for the reply, a good idea for the food journals. I have an idea and my triggers seem to be meals high in carbs, so I know roughly my triggers and have almost eliminated some foods. However, I can't just stop eating carbs as I find it difficult to keep weight on as it is! Also, smaller but more regular portions of carbs seem fine.

I found the following at this site;

hsc.usf.edu/COM/epilepsy/IGE.pdf

Idiopathic Generalized Epilepsy
The classic drug of choice for IGE is valproic acid (Depakote).
• For patients (usually children) with absence seizures only, ethosuximide
(Zarontin) is also an option.
• Other medications can be used in IGE. Phenobarbital and primidone
(Mysoline) are old drugs that tend to cause sedation. The following drugs
may well be an option too, although they are not yet officially approved
for this: lamotrigine (Lamictal), topiramate (Topamax), levetiracetam
(Keppra), zonisamide (Zonegran).


Lamotrigine and levetiracetam were two drugs mentioned to me before, but I wanted to try without meds first.

Any good/bad experiences with these?

Thanks again...

 

[LuvMyTwins]

I have been classified as having this type of seizure pattern. I was put on Tegretol many years ago (like 30). My doctor, who deals with percentages only, always talks about Depakote (you will gain at least 10 pounds on this) and Lamictal (hair falling out, restless sleep). Tegretol would be a 3rd choice. Yet, it's always worked for me. So, I've refused. I will say that when a doctor overdosed me in the fall, the neurologists just randomly played with drugs. I finally said, "STOP!" and am slowly titrating down to what I feel I can deal with until I get rid of my symptoms.

Quite honestly, I've worked on using complementary methods to help with this type of pattern. The belief that I have is that my seizures are reactive. I do not have the classic epilepsy pattern as my body has been virtually free of any issues besides this. I'm working to use food as a medicine along with neurofeedback, exercise and spiritual practice.

The only advice that I can give, without a medical license, is to empower yourself and become your best advocate. Be informed about the drugs that you may have to take along with the possible side effects. Also, don't be so quick to take meds. My parents went right with the meds when I was 12---I wish they didn't get so scared at the issue. The meds are toxic. Seizures are a symptom and should be treated as such. We can't medicate the symptom if we want to solve the problem---we have to solve the problem first. Then, the symptom will follow.

 

[Nakamova]

AED meds tend to come with a host of side effects, but not everyone reacts the same. I'm on Lamictal and I've experienced weight gain, hair loss, vision blurring and dry mouth among others. I was on Zonegran, and it affected my ability to eat -- as an appetite suppressant, and because it made my stomach really hurt. It also made me cranky and depressed (I am usually neither), and a little slow cognitively, some of those probably due to low blood sugar and dehydration. No experience with Keppra, but I've heard it can make you emotionally volatile (Kepprage).

In terms of keeping weight on, have you tried adding to your diet some of the fats with Omega-3s (chia seeds, flax, olive oil, avocadoes, salmon, etc.). Very beneficial for the brain and plenty of calories!

Best,
Nakamova

 

[Kween]

Hi DE,
I myself finally figured out after being medicated for the 1st 27yrs of my life along with never being sz free, that it was Food and Chemical Allergies I had causing all my szs and I also read a book called "Brain Allergies" by DR.William Philpott to verify it all. Have you been tested for allergies? That's when all the answers came for me. Good Luck in whatever road you choose to travel on.

Sincerely
K

 

[debanks]

Thanks for the replies, it's interesting to be aware of some of the side effects that people get before jumping in to taking meds. I had my first seizure 2 years ago and haven't taken meds (except clobazam from the hospital once) as they are relatively infrequent seizures. Now I am interested in trying it out, not sure I fancy any more hair loss though!!

I have been eating plenty of avocados, nuts, seeds, fish etc and I am slowly putting weight on including working hard at the gym which is helping over all health.

Luvmytwins-good point about dealing with the problem first, I have narrowed my issues down to eating carbs/lots of veg however I still don't know what chemical/hormonal events are occurring to cause the seizures exactly - still having ongoing endocrinology tests etc..

Kween, interesting you say about allergies etc.. Do you know exactly what they were in the end? I have been tested negative for celiac disease and dont have any other known allergies. Maybe it could all be down to something simple.

Thanks all again for your help

 

[alivenwell]

Hi! Do you manage to keep a good level of electrolytes in you system, especially during hot weather? Have you had sugar levels monitored as well? I know that low glycemic (sugar) levels can cause seizures.

I do a lot of stress management. I have a therapeutic devoted border collie, and a very strong interest in music.

It sounds like a food journal is a great start. And, you do seem to be on top of what you eat as well.

I am on Lamictal, but I have had excellent seizure control without the side effects. I do eat a lot less than most people mainly because I really try to watch carbs as well. They can raise sugar levels.

 

[Kween]

Hi Debanks,
The answer is Yes and it was suggested to me to keep a daily journal on when I basically did anything becuase I had allergies to literally everything including my own estrogen, as my dr.told me "your untreatable" and that's when I made major diet and environmental changes and started putting my puzzle of hell all together. I also happen to always have immediate reactions and never delayed ones thank God!
I then happen to read this one lady who started drinking green tea and it cured her E so I tried it and I craved it so badly I was doing 4 cups a day as my body craved it for 3 solid yrs and it's been my answers beyond what I could of ever imagined, as I'm still healing and in Awe over it all. I,m now am down to 2 cups only I now can eat, drink and breathe things like nver before w/no reactions but it took many lost yrs and I believe that the most simplest things in life can possibly heal ones life.
Oh I also forgot to mention Perfumes are 90% of my szs that I still have today,because when i go out too much i get in toxic overload and seizing is my bodys' way of dumping it all, I have a website that has scientific proof on the poisons that are used in making them, if your interested. Good luck in finding your answer(s)

Sincerely
K

 

[RobinN]

Debanks - from my reading, celiac testing can be quite unreliable. You also might just be sensitive.

Consider also that the intestinal tract needs healing from years of the SAD (Standard American Diet), and the liver can be congested and not be able to process some of the additives, and toxins that it gets bombarded with on a daily basis.

It is by no means a Quick Fix, but worth it in the long run.

 

[debanks]

Hi Robin, sorry for the delay in replying and thank you for your suggestion.

I have arranged to see a Neurogastroenterologist Professor here in England, so I am hoping he can shed some light on the issues I am having. I am wondering though, even if he was to find a problem, what could be done about it anyway??

In the meantime I am starting on Keppra from 250mg a day all the way up to 1000mg after 4 weeks of titrating up. Hopefully I will tolerate this well and this may stop any future occurrences!

Speak soon

DE

 

[debanks]

Hello again....

I have started on Keppra 250mg a day so far since Tuesday and am really struggling with tiredness. Literally could go to bed by 2pm everyday and I'm only on a quarter of my eventual dose!

Does anyone have any idea how long this tiredness effect may last? I pretty much don't have the energy to do anything!!

 

[Nakamova]

The tiredness is often more extreme while you are starting or tapering up on Keppra. It may take until you are on a stable dose for a few weeks before the fatigue goes away. It IS the case that fatigue is a side effect of Keppra, so if the fatigue is still problematic after you've been on it for awhile, then you might need to consider a different drug. You probably know to supplement with vitamin B6 to help with some of the "rage" that can show up with Keppra. In general a B vitamin supplement can help with energy.

Best,
Nakamova

 

[RobinN]

Hi Robin, sorry for the delay in replying and thank you for your suggestion.

I have arranged to see a Neurogastroenterologist Professor here in England, so I am hoping he can shed some light on the issues I am having. I am wondering though, even if he was to find a problem, what could be done about it anyway??

Speak soon

DE

Healing from the inside out, is what can be done about it.
Surely not as easy as taking a blue pill, but in my opinion it is worth the effort. Better overall health.

 

[debanks]

Thanks Nakamova and Robin, I can't tell you how great it is to get such quick reassuring responses! Hopefully through my experiences I'll be able to offer something back to the forum.

I am definitely on a mission to get to the root cause of my seizures as they have only happened whilst eating and I'm sure I can be fixed from "the inside out". The Keppra should help any progression to grand mals in the mean time and I will go for the B6 supplement I think.

Will keep you guys posted on the progress.. Thanks once again you guys

 

[chrys]

keppra

Hi there

I've been on Lamictal and Keppra for a few years now. The Keppra definitely causes me to feel exhausted and I'm incredibly moody. The only thing that has helped with the tiredness is high doses of vitamin B. A good supplement is Solgar V2000. It has really made a massive difference. If you are still experiencing that side effect try it!

 

[Jem]

New to Forum - Father Having Seizures

Approximately 10-11 years ago, I found out that my father was experiencing "episodes" while I was away at college. These episodes were severe enough for him to lose his job. It is my understanding that they occurred within a few week period and then were gone.

Last Monday, he started having the epsiodes. He finally went to see a physician here who quickly diagnosed him as being Epileptic and prescribed Depakote and a follow-up with a neurologist (along with the usual labs, x-rays, etc.) My father says they seem to occur only when he eats.

I've been doing some reading on what is known as Reflex Epilepsy. At first when my father said they occur only when he eats I thought perhaps that is when he notices them more, but the research seems to say otherwise. I can see the fear in him as he talks about it and how he feels when he is having an episode. His symptoms seem to be spot-on to the info. I've read about.

Tonight he seemed to have another episode but this time I was in the same room. I do not get freaked out very easily and calmly just walked over and sat with him. When it was over we discussed what he was feeling, I took his vitals, and we just sat for a while. My mother is going to be a huge problem. She is very concerned about him not being able to work and them losing their medical coverage. (Which really is junk to begin with but at least it's some kind of coverage.) I do not want him to worry about working since they both live with me and my husband anyway, however, the medical coverage is a concern to me.

Have any of you lost a job and medical coverage because of having Epilepsy? What have you done to find coverage (affordable coverage)? My father is only 60 years old and does not qualify for Medicare. We live in California...

Thank you for your time.

Regards,

Jem

 

[RobinN]

I would think Cobra would be an option.

You are in So California... any interest in learning about Neurofeedback and making nutritional changes?

Curious if he had been seizure free up until the time he was about 50?

Learning that seizures are only a symptom helped me to better understand how to help my daughter raise her seizure threshold and become seizure free and med free.