Reaching Out Cause I Dont Know Where to Turn

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jake9

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Hello,

I'm hoping someone will be able to help me. Started around age 9 or 10. My seizures last anywhere from three to ten seconds. I typically "blank out" (i.e. I'm not aware of anything - could be described to a situation similar to being asleep but not dreaming - just a void). I was diagnosed at age 14 with petit mal seizures and was originally prescribed valproic acid. Initially, 1000mg imliminated the seizures for about a year. After that taking medication was a responsibility that I was unwilling to fulfill. It got to the point where I started taking 1500mg valproic acid which still wasn't completely eliminating them. I went back to a neurologist round age 28 that stated I might have partial complex seizures instead. I took carbamazapine religiously for a while which just made things worse (which implies partial complex seizures was a mis-diagnosis). I switched to ethosuximide and took it religiously for about 6 months which reduced the seizures, but didn't eliminate them. Due to unwanted side-effects and a lack of desired results I decided to stop driving and taking any medications (chose the lesser of two evils, of you will). I'm at a point that I'm really not sure what seizure condition I have (my understanding is that petit mal goes away during the early to mid twenties). I am currently 30 years of age and I have no insurance (gotta love prexisting condition clauses) to get a proper diagnosis. I wanted to ask around to see if anyone else has experienced similarities and how the outcome unfolded. I'm worried that since these seizures have not gone away, they're going to get worse with age. Has this happened to anyone here? Any help, regardless of size would be greatly appreciated. Thanks in advance!

Best regards,

Jake
 
In truth

petit mals do NOT necessarily disappear in the teens/early 20's. They, like epilepsy itself, can show up at any time. It is also possible for seizures to change from one type to another.....

Different meds make for different results in different people...and sometimes the choice of meds isn't alway right.....it's sort of a guessing game for docs. The med merry go round is no fun, but sometimes that is what's necessary.

Have you considered keeping an e journal, and possibly looking into changing diets? Perhaps you will find a trigger or triggers by doing so--and that can help you eliminate things to help control the seizures. Some people are photosensitive, some people (like me) have issues with their diet. There's the possibility that yours could be triggered by lack of sleep/hormones, or many other things.

Those are things to seriously consider. As for insurance, is there some way that you can get aid from the area in which you live while you're trying to obtain it?

Personally, I have four types of E, although mine are all nocturnal (when I sleep.) They don't stop me from doing much--I refuse to let them. (I'm stubborn....I think that's the right word :) )

Check into neurofeedback as well.......it helps to retrain the brain, which when the brain seizes a lot, it KINDLES........or learns to seize and seize and seize again. Maybe not all right in a row, but it's easier for the brain to seize the next time, because of the kindling.

I want to take the time to welcome you to CWE, btw. I'm sure you're going to like it here......lots of friends to make, information to find (the Library and Kitchen are great for that), and we even have a Padded Room for the days you just NEED to vent.

So kick your feet up, and hang out. I'm sure you're going to find our dinner party quite fun. :)

Take care,

Meetz
:rock:
 
Hi Jake, welcome to the forum. :hello:

jake9 said:
... a neurologist round age 28 that stated I might have partial complex seizures instead. I took carbamazapine religiously for a while which just made things worse (which implies partial complex seizures was a mis-diagnosis). ...
Click to expand...

Not necessarily. There can be many reasons/causes at the root of a seizure disorder. You could very well be experiencing complex partial seizures that the carbamazapine couldn't control. AEDs don't work for everyone.

jake9 said:
... my understanding is that petit mal goes away during the early to mid twenties ...
Click to expand...

Again, not necessarily. Epilepsy doesn't fit into neat little boxes like that. There are lots of people, my wife included, who have experienced all manner (ie. types) of seizures well past their mid twenties.

jake9 said:
... I'm worried that since these seizures have not gone away, they're going to get worse with age.
Click to expand...

That is a distinct possibility. Here's my suggestion: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

I'd also recommend: http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/
 
jake9 said:
I typically "blank out" (i.e. I'm not aware of anything - could be described to a situation similar to being asleep but not dreaming - just a void). I was diagnosed at age 14... I went back to a neurologist round age 28 that stated I might have partial complex seizures instead. I took carbamazapine religiously for a while which just made things worse (which implies partial complex seizures was a mis-diagnosis). ...I'm at a point that I'm really not sure what seizure condition I have (my understanding is that petit mal goes away during the early to mid twenties).
Click to expand...

As previously stated, not necessarily true. I'm 35 and only started having this kind of seizure after a bad car wreck in '07 followed by another bad wreck in '08, both of which knocked my head about pretty good and gave me TBI. So I was 32 when my seizures even started. I take two meds currently, one of which is carbamazepine, and the carbamazepine seems to be helping (though not completely - we'll see what happens as I double up to the full dose the doc wants me on and it has time to settle into my body), but that's not true for everyone. Some folks, carbamazepine doesn't work for at all. Some meds do wonderfully for some people and for others, the same medicine is like taking a sugar pill. Everyone's body is different.



jake9 said:
I switched to ethosuximide and took it religiously for about 6 months which reduced the seizures, but didn't eliminate them. I am currently 30 years of age and I have no insurance (gotta love prexisting condition clauses) to get a proper diagnosis. I wanted to ask around to see if anyone else has experienced similarities and how the outcome unfolded. I'm worried that since these seizures have not gone away, they're going to get worse with age. Has this happened to anyone here? Any help, regardless of size would be greatly appreciated. Thanks in advance!

Best regards,

Jake
Click to expand...

I've taken topiramate for almost ten years for migraines and it didn't do diddly on its own for my seizures, either - even though it's my neurologist's first choice for both migraines and seizures. She wanted to switch to depakote and we're still fighting over that because I told her "no way in hell" because that's the first thing they gave me years ago for migraines and I gained about 100 pounds, took me a year to get that weight off and I am just vain enough that I refuse to do that again.

Is there a free clinic in your area? That is one alternative. Most areas have a free clinic for folks without insurance or any visible means of obtaining healthcare, so it's possible you may be able to get seen there. It's often a bit of a wait for an urgent care, but it's better than not being seen at all and after the boot in the butt I got from a paramedic friend (who went out of her way to scare the crap out of me with what could happen if I continued to be stubborn and not go to the doctor), I tend to advise erring on the side of caution and giving up a few hours of one's day if that's what it takes.

As for me, I got off my butt and went kicking and screaming to the doctor (I hate doctors). I still have more seizures than I am really happy about or comfortable with, but it's getting better day by day with the meds and the diet changes and other stuff I am doing to try and improve my quality of life (still working on getting enough sleep because I haven't gotten 7+ hours of sleep in longer than I can remember - insomnia is a real problem for me). This week, I actually managed to get out of the house by myself for the first time in months and go for a short bike ride, which was pretty major progress. It gets better, but you have to do your part and work at it.
 
I started having both simple and partial complex seizures two years ago at age 47.
I take Keppra and while it has helped a lot with the seizures I am having, I still get one every 4-6 months and so my Keppra level has been adjusted several times.
There are several medication options and perhaps you should talk to your doctor about a different medication or adjusting your current level.
When I first started having seizures, I called it '"extreme sleepwalking" and doctors recognized it as being seizures.
 
jake9 said:
I went back to a neurologist round age 28 that stated I might have partial complex seizures instead. I took carbamazapine religiously for a while which just made things worse (which implies partial complex seizures was a mis-diagnosis). I switched to ethosuximide and took it religiously for about 6 months which reduced the seizures, but didn't eliminate them. Due to unwanted side-effects and a lack of desired results I decided to stop driving and taking any medications (chose the lesser of two evils, of you will). I'm at a point that I'm really not sure what seizure condition I have (my understanding is that petit mal goes away during the early to mid twenties). I am currently 30 years of age and I have no insurance (gotta love prexisting condition clauses) to get a proper diagnosis. I wanted to ask around to see if anyone else has experienced similarities and how the outcome unfolded. I'm worried that since these seizures have not gone away, they're going to get worse with age. Has this happened to anyone here?
Click to expand...

Hi Jake,

I started having CP seizures (used to be called petit mal) when I was 22 years of age. They appeared out of the blue for me, and only grew worse with time. Within about 6 months I had my first TC (grand mal) seizure on the way out of the shower, falling and hitting the hot water, suffering 1st and 2nd degree burns on my back and right arm.
We started on Dilantin, which controlled seizures for awhile, but then went haywire after my children were born. I had a left temporal lobectomy, which made the TC seizures worse, memory is bad, depression is terrible, cannot work now, and have tried 10 different medications, none controlling the seizures completely. I even had the VNS as a last resort, not a cure-all, though. I still take 3000 mg. of Keppra and 500 mg of Topamax a day.

I sure hope you have a better outcome, but please, find something that works before you injure yourself.
 
My daughters seizures have been reduced by eliminating medications and making changes to her nutritional choices.
 
Hi Jake - My neurologist explained to me that untreated seizures are like walking through the forest. At first it may be hard to get through but gradually a path will form. The same thing happens with seizures - kindling as someone said- the seizure activity will create a path and the more seizures you have the easier it is to have more.
I suggest you contact the neurologist's in your area, explain your needs and see if they could direct you to help. You could also contact the Epilepsy Association. The one I am affiliated with will help with MD expenses and buy medications - for a while.
I hope this helps. Finding the right medication can be an ongoing process. You need an MD to follow you. Keep a seizure journal. Note how much sleep you had, were you under stress, what did you eat, what were you doing when the seizure started, what sensations accompanied the seizure...etc
Good luck and don't give up.
 
Welcome Jake,

You've turned to the right place. It's a very tricky disorder. I've had many types of seizures over my life. The ones I remember started around age 9 absence seizures, they increased to reflex seizures at 13 I kind of got stuck in the simple partial phase for the next 23 years. Around age 43 they kicked into complex partials and I finally saw a Neurologist. I was fortunate to find a distinct cause - a malformation in a vein, I had it along with my hippocampus and part of the right temporal lobe removed last June and have been seizure free since but not guaranteed that for life. So I have to take very good care of myself, sleep and eat well avoid stress and alcohol. As for outgrowing seizures I agree with Robin that you can raise your threshold through nutrition and living well but we're always at risk. Find a great Neurologist preferably an Epileptologist and merge that with what you learn here about nutrition. You have to act as your own advocate. As for financial help - that's a toughy maybe the Epilepsy Foundation in your state can help.
 
Jake, welcome to CWE! It sounds like there was some reluctance to take medications there because of side effects or a stronger desire for seizure control on your part. It's a fine line to find that perfect medication, lifestyle and/or treatment to control a seizure disorder.

We are all different in our reaction(s) to different treatments. I've had a lot of success with Lamictal with no side effects.

If I was you, I'd find a good neurologist as soon as possible before you have a really harsh seizure or get an injury from one. If it's a severe seizure, the kindling could really kick in and make it more difficult to bring the epilepsy under control again. That can take months.

It's a tricky disorder. Take note of diet, exercise, sugar counts, blood pressure, lighting, stress, sleep deprivation, unusual sensations or auras (warning of a seizure). Precount medications and set an alarm on a cell phone/watch to take the medications generally at the same time daily.

Also, just as an extra issue...I feel very strongly in favor of taking brand-name only medication. It always has the same filler content everytime it is taken and always dissolves at the same rate. Some of us go for generics, which is fine if they have the same filler and rate of absorption. When I was briefly on generics, I made sure the pharmacist gave me the exact same generic company's medication. People have experienced breakthrough seizures simply from switching from brand to generic, generic to brand, or from one generic company to another generic company.
 
Last edited:
alivenwell said:
Also, just as an extra issue...I feel very strongly in favor of taking brand-name only medication. It always has the same filler content everytime it is taken and always dissolves at the same rate. Some of us go for generics, which is fine if they have the same filler and rate of absorption. When I was briefly on generics, I made sure the pharmacist gave me the exact same generic company's medication. People have experienced breakthrough seizures simply from switching from brand to generic, generic to brand, or from one generic company to another generic company.
Click to expand...

:agree:

I am currently fighting the VA on this very issue...the past 3 months, I have gotten 3 different varieties of topiramate: the brand name, Teva generic, and some other random gfeneric. I keep bringing this up with my doctors, who have brought it up with the pharmacy and the pharmacy's answer is "unless you can show medical proof of dangerous side effects, we don't care." *sigh* Has me wondering if part of the reason there's been so much trouble getting a handle on the seizures and they had to add tegretol as well is because they keep changing the bloody medication. :(
 
I have to help my patients with this problem quite frequently. The insurance company will pay if you have documented evidence of breakthrough seizures while on the generic medication. You must keep a record of the frequency and type of seizure as well as any adverse physical effects from the seizure ie: trauma from falls, broken bones, hospital admissions or ER visits r/t seizure activity. The more documentation you can provide the MD the better your chance of getting the medication. Keep a record of EVERY event r/t your seizures and every seizure. This has worked every time - maybe not right away- but don't give up.
 
It kinda makes one wonder if that may be a big part of why epilepsy is so uncontrolled. I had an apposite effect. I started on generic because the pharmacy filled it that way and when I switched to brand had a seizure within 48 hours. The pharmacy did agree though that they couldn't grantee that they would have the same generic each month and yes it would be a problem. I've been stable on the brand name ever since though.
 
jake9:

this forum is the best ....:woot: it is an awesome resource!

my DD, 14 is still going throught trial and error with her meds... we do have a correct diagnosis (partial multi focal epilepsy with seizures localized in the frontal and occipital lobes) after getting a second opinion at an epilepsy center ... the frontal seizures are not under control yet, but we are working on that-- trial and error seems to be the theme here.

here are a few links that were helpful to us:
www.naec-epilepsy.org
www.webmd.com/epilepsy/epilepsy-seizure-control-8/epilepsy-drugs?page=2
read:
Epilepsy: Patient and Family Guide, by Dr. Orrin Devinsky

Record keeping and researching has been and will always be key for me. It helps me to raise her seizure threshold. It also makes me a very strong and confident advocate! Dates with drug schedule, number of seizures during those dates, time of seizure, how long lasted, etc. possible triggers, side effects --etc. Facts and figures all the way!!:banana:

Can your physician help you at all with getting insurance coverage?

Keeping pushing forward--
 
Bernard said:
http://www.coping-with-epilepsy.com/forums/f22/generics-vs-brand-name-meds-8292/
Click to expand...

THank you for this, Bernard. I am gonna print the article out and take it to my doc at the next visit along with my seizure diary. The tegretol has helped some (went from 1/2 dozen or more simple partials/complex partials a day down to one or two a day), but last night I had a pretty bad one that messed me up pretty good for most of the night after playing WoW for less than 15 minutes when WoW has never really bothered me before (I've been playing that game for more than a year)...and it's within a couple of weeks of the VA pharmacy switching me to yet another generic topamax. I can't help but wonder if there's a connection there with them constantly switching out the generics like that. :ponder:


Kind of interesting to note that they're not giving me generic tegretol....
 
flinnigan said:
http://us.mc639.mail.yahoo.com...

Sorry its a very long link.
Click to expand...

You will need to either quote the material (copy/paste) or post the links contained in the email. Yahoo! does not allow people to view your yahoo emails.
 
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