New Here... Looking for Some Advice

[mikestightride]

Hello everyone. This is a wonderful community that I stumbled upon.

My name is Michael. I am a 27-year-old proud father of 2. A few years ago I experienced my first tonic-clonic seizure. I had no aura or warning signs (I just remember waking up in the ambulance). Soon after I had all of the standard tests performed on me such as EEG, MRI, EKG, Blood Tests, etc. All of the results were normal. After 6 months of precautionary Keppra that I was taking, (With my Neuro's help) I weaned myself off. My family and I believed that this seizure was idiopathic and a one-time occurrence (Never to happen again since I don't have epilepsy in my family or a history of seizures).

Well... A year later after remaining seizure-free I had another tonic-clonic seizure (This time in my sleep). All tests were run again and all results were again normal. At this point they placed me back on the 1,000 mg of daily Keppra and within a month I had a third seizure.

After the third seizure we increased my Keppra dosage to 2,000 mg daily and another year passed with no seizures. Until last month that is. I had a 4th tonic-clonic seizure in the afternoon. Now I am taking 3,000mg of Keppra daily (Which I was told is the maximum stand-alone dosage).

Here is where I need some advice from others who can relate to me... My epilepsy is so sporadic that I don't know what alternative treatments that I am trying is actually helping prevent seizures. I have changed to a very healthy 80% fruits and vegetables diet. I am trying to deal with the possibility that these seizures are somehow related to past built-up emotional trauma.

I don't know how to determine what method is most effective for me. Do any of you have similar types of seizures or know how I should best treat this type of epilepsy. At this point I am just looking for some direction because I am tired of the trial and error method of treatment that the Neurologists use in treating my condition (I don't blame them because I know the brain is still a mystery to modern medicine). They tell me to stay on the maximum dosage of Keppra until I have another seizure, then if I do have another one we will know that I need to add another AED. This is so frustrating. I am open to any advice.

Thanks for your time!

 

[Nakamova]

Hi there!

Do you keep a journal? Even with very sporadic seizures, a journal can be helpful in trying to isolate seizure triggers, including emotional ones. The usual triggers are stress, lack of sleep, blood sugar issues, infection, etc., but there are other possible triggers too. Even with your healthy diet, you may benefit from taking a look at adding certain vitamins and nutrients such as omega-3s -- these might help you remain seizure-free on a lower dose of medication.

Also, it's possible to build up a tolerance to some of the meds (although drug companies don't like to talk about it), so it may be that the Keppra just isn't working for you anymore. Is there a reason why your neurologists want to add another drug to the mix (as opposed to trying a different single drug)? For some people it does take a combination of AEDs, but it's great if you can get by with just one.

I know that the trial-and-error process is frustrating, but the response to the drugs is so varied that neurologists have to make their best guess at what might work, and patients have be, well, patient...

Best,
Nakamova

 

[knothing]

Welcome to the site. My Neurologist took a different approach than yours. He was more slow paced at going to Keppra (2 grand mals). But I went to 3000 mg over a 6 week period. I have not had a grand mal since but have different types of seizures since. I also found out that I had been having seizures since I was a kid but did not know they were seizures (deja vous type of stuff). I found more information out by talking with others (local and online).
Best first step is to gather all the information you can and learn from others. Also I have learned that 300mg is not the maximum dose given, I have met others that take 4000-5000mg a day. According to my neuro this is not uncommon. It is very tough to deal with because the information can be so cloudy and vague. You will find those people with seizure go all different routes to stop them.

On a last thought here but if past emotional trauma is causing this then a trip to the psychologist might be what is needed to deal with an issue like that. Also second opinions from another Neurologist would not hurt either.

 

[mikestightride]

Thanks for your quick responses

I do not currently keep a journal although it seems like a great idea to help me pinpoint some of my seizure triggers.

As far as Omeg-3's go: I have introduced much more walnuts, soy, fish and other foods into my diet to help me in this area. Could you recommend any other vitamins or nutrients?

My wife and I asked my Neurologist about the body working up a tolerance to the same medication over an extended period of time and he told us it was unlikely. I think I need a second opinion about this because common sense tells me otherwise.

One Last question: Can anybody share their experiences with Qigong Accupressure, CBT or similar alternative treatments? I do believe that my seizures may have something to do with past traumas and before I go the psychologist route I wanted to explore these other options. Any ideas?

 

[Nakamova]

Hi there,

Below is a link to one article that talks about developing a tolerance to AEDs, and by googling you can find others out there.

http://www3.interscience.wiley.com/journal/118726166/abstract?CRETRY=1&SRETRY=0

 

[Nakamova]

For vitamins/nutrients -- different things work for different people, but some that can help are Vitamin E (especially in combination with selenium), the B vitamins, magnesium, and zinc. Other vitamins (like calcium) can help with what the AEDs drain out of your system. It sounds as if you're getting good Omega-3s in your diet, but for variety you could also try chia seeds which are an excellent source of Omega-3s.

 

[Meetz1064]

Hmmmm

Well, the Bvitamins are always a great thing for brain health, and Omega 3 & 6 are quite helpful, too. Fish oil capsules can aid in the memory department--just look for the enteric coated ones so you don't burp up fish oil! EWWW LOLOL Oh, and magnesium is great for migraines....

Nakamova's right about the journal----and make it as detailed as possible. Let's see if I can possibly remember everything that Skillefer tells everyone to put in it (I'll forget something, I'm sure)

1. Sleep (how much, when)
2. Eating (how much, when, what)
3. TV, video, computer times (how much, when)
4. Menses (if you're a woman) because there is such a thing as CATAMENIAL EPILEPSY
5. Exercise (how much, when, how long)
6. Seizures (when, how long, where, anything you can find out from witnesses, etc)

OK, I KNOW I forgot SOMETHING in that list........onder:onder:

Now, that said, as you keep track of those things, start keeping an eye on it. You may begin to notice something that is a trigger. Maybe it's the lights in WalMart, maybe it's the gluten or lactose in foods, maybe it's the pattern created by trees' shadows on the ground....maybe you are temperature sensitive. It might even be a drop in blood sugar.

Keeping that all in mind, do the following things:

1. Keep the journal, daily, although it is a pain in the arse. :bigmouth::roflmao:

2. Eat balanced meals...Skilly promotes 6 small meals a day, and I think she's right. A protein and carb to match each other, and only enough to fill a dessert plate. (There's actually one guy on here whose seizures are triggered by eating...that is called REFLEX EPILEPSY)

3. Sleep. A MINIMUM of 7 to 7.5 hours EVERY NIGHT NO EXCUSES. Set up a routine, and follow it, without fail.

4. TV/video/computer. OK, yes, this sounds weird, but some people truly are set off by photosensitivities to these things. (If you ever see something on this site that really bothers you, let one of us mods know, and we will take care of it immediately for exactly that reason.) Some people can get around it by wearing blue polarized lenses in their glasses....

5. Catamenial epilepsy won't apply to you, but some guys do have hormonal types of epilepsy....they're just not named CATAMENIAL epilepsy. So it wouldn't hurt to have your hormone levels checked.

6. Exercise CAN be a trigger, believe it or not, for seizures. Whether that is because your different hormones increase, or an increased heart rate, or whatever, it varies by individual, so you MUST keep track of what you do when you exercise. However, do NOT skip exercising....we E patients still need to stay as physically fit as possible.

7. Seizures. These suckers suck, period. I hate my t/c's when they hit. BAH. Take note of everything that you possibly can. Did you have an aura? (warning--smell something weird? hear something no one else did? deja vu? you get the idea) Do you remember ANY part of the seizure? If so, what? Write it down, and then, ask witnesses what they saw, how long the seizure lasted, did you go to the hospital, etc.

********

In regards to your comment about the body building up a tolerance to a medication....

Well, some people don't build up a tolerance to a medicine at all, some do. As an example, I have used Dilantin off and on for 35 years (I'm not currently using it). I've used Phenobarb consistently for 18 years, and didn't build up a tolerance until that 18th year. Then, I went toxic, and fast. Scared my boss (now husband) witless. I've used Depakote for 7 years as well as Lamictal, and am back on the Lamictal again.

But, I tried Keppra a few months ago, and it took less than 3 weeks to find out that the two of us did NOT agree in any way shape or form. I, uh, reacted VERY BADLY on that stuff........*sigh*

Now, you also asked about the CBT and Qigong. I believe Bernard's wife, Stacy, had tried the Qigong, but please don't quote me on that. I do know that one of the other super moderators, Epileric, is going through a CBT class...he might actually be finished with it by now. You might try PM'ing him (sending a private message) to ask him how that went.

Finally, I wanted to take the time to welcome you to CWE. Have a great time checking out all the nooks and crannies to find all sorts of cool information here, especially in the Library and the Kitchen. There's even a Padded Room to vent in when you need to. Mr B (Bernard), our host, has built us an AWESOME home here.

So feel free to kick up your heels and hang out. Hopefully someone will bring around some decent coffee--I burnt mine again....

Take care.

Meetz
:rock:

 

[epileric]

Welcome mikestightride

(or should I just call you Mike?)

It's true, I did just finish a CBT course. I've documented the first few sessions in the history book (sub-forum of the library).

I'll be documenting the rest of the sessions soon, I've had one thing after another making me put off doing that, my apologies to everyone for that.

I will say though that CBT does not deal directly with E. but is a great way to deal with anxieties & moods and since stress is a common trigger of E it still can help.

 

[mikestightride]

Hey everyone. Thanks again for all of the advice. I am going to look into adding vitamins into my daily diet. After all the information I heard about journals now I have to start one. I honestly thought that since my seizures were so random that it wasn't worth my time to keep a daily journal, but now I can see the value of keeping one. I still am kind of unsure about whether the accupressure or CBT is worth it for me since I have no way to gauge the results (Being that I only have 1 or 2 seizures a year).

It's funny... Before I discovered CWE, I felt like I was the only person in the world dealing with E. In fact at times, I didn't want to accept that I had any health problems. This is such a wonderful resource for all of us and I am very happy that I found it.

By the way... You can call me Mike

 

[Meetz1064]

I was

looking at all the vitamins that Nakamova listed.....and I take them all....I also take Taurine in combination with the Fish Oil to help with one of my epilepsies in particular (electrographic). The Fish Oil is great for memory, too, but the combination is great, at meals, to help patients like me to actually get more rest at night, and prevent ONLY our brains from seizing, which is what happens in electrographic E (there's no physical manifestation, so you wake up exhausted).

Vitamins are a GREAT thing....:woot::woot::bigsmile::bigmouth::agree:

 

[RobinN]

It's funny... Before I discovered CWE, I felt like I was the only person in the world dealing with E. In fact at times, I didn't want to accept that I had any health problems. This is such a wonderful resource for all of us and I am very happy that I found it.

You are not far from me, in CA. Which means you are not far from The EEG Institute in Woodland Hills. They were instrumental in helping my daughter gain control over her seizures. They have a free consultation. I highly recommend that you meet with Sue Othmer, as she had a son with a seizure disorder.

Nutritional changes have also played a huge role in her control. She is med free, and is loving life once again. (She use to have 6 tonic clonic seizures a month)

 

[mikestightride]

Wow thanks RobinN! I am about 10 minutes from Woodland Hills. I will definetly give them a call. Do you think that Neurofeedback can be effective for the sporadic seizures that I experience? I am concerned that I will never know for sure if it is helping or not since I will not see any results immediatley.

 

[RobinN]

This thread might be helpful:

http://www.coping-with-epilepsy.com/forums/f22/emotional-trauma-stored-body-520/

I commend you on making the nutritional changes needed to regain your health. I have seen it work with my daughter, though it is not a quick fix. I would say it has taken a year, and with still room to improve for her. Consider eliminating your soy products as well, since they not only have a protein similar to casein, it is high in estrogen which is known to excite the brain.
Also, it might be worth an experiment to add some ionic magnesium to your supplements list. We all tend to be deficient, and it can cause interesting brain irregularities.

Hope this info helps.

 

[HELP4U]

Hi! Good luck. I'm 68, have been had epilepsy since I was 37. Cause: ??? (Read: STRESS). Have had many neurologists; almost as many meds.

Finally found a combo that seems to work: lamictal (100 mg, tid); trileptal (600 mg, bid); tranxene (3.75 mg, bid). Makes me very sleepy; loss of balance, double vision; hair loss; loss of bodily sodium (which in itself can produce seizures), curable by ingestion of sodium supplement), addition of weight though not inevitable.

GET SLEEP; GET SLEEP;GET SLEEP. No alcohol,smokes, reduce coffee.

See at least one MAJOR TEACHING HOSPITAL WITH SEIZUE CLINIC FOR THEIR ADVICE.

Check for another local neurologist: not only as a back up doc, but some one with whom you can ask Q's you forgot or feel uncomfortable asking other doc.

DO NOT TAKE GENERIC MEDS.

Think about how you can cope with it, cure it, live with it.

Now, go to bed.

Again good luck,
Help4U

 

[RobinN]

Neurofeedback is being used successfully for migraines too. It is effective for many neuro disorders. Your first visit is free, and if you tell them you are from CWE, they will give you 10% off.

I saw results with my daughter after about the 6th visit. You must consider nutrition too though. They go hand in hand for brain health.

 

[paradise survivor]

Hey Mike, I noticed in your comments that you thought some past trauma was the root of the problem. E is not a psycological manifistation. While stress can be a trigger to events, it is the brain firing at random. I too suffer from E and it is not everyday unless it is everyday because of triggers such as overtired, stress, missed medication, that kinda thing. In other words there is no rhyme or reason per sey but a journal does help to find your triggers. After extensive testing the doc finally saw the storm...oddly enough, I thought the test was a waste of time because I 'wasn't feeling anything'. Wow who'd of thunk it....?:e: