New to forum, fresh out of denial

[Naomi55]

Hi. I have a history of tonic-clonic nocturnal seizures. The first one was witnessed when I was 22 years-old and 22 weeks pregnant. I was started on tegretol and my daughter was born without complications. I suffered a few more seizures due to medication non-compliance before I resigned myself to playing their game, took my meds as prescribed, acheived 3.5 years seizure-free, and got weaned off my meds at the first of the year. Lo, seven months later, I had two seizures Wednesday night. My neurologist has retired and his partner is going to see me next Wednesday (my old MD always got me in the day after an event, even if it was during his lunch break), and I'm feeling REALLY dopey on the tegretol... And cranky! I know I suffered side effects before but it was better than the Dilantin and I had it in my head that I did NOT have a seizure disorder, so it was only temporary. Now it appears otherwise.

I'm just introducing myself because I've been lurking all around your forum.
Do you continue to see your neurologist after you have a seizure? How long to get used to the tegretol again? Any words of wisdom on trying to accept this diagnosis? Will a neurologist ever try to wean me off my meds again, after this failed attempt?

Does anyone have any experience with a successful trial off meds after a failed attempt?
Does tegretol suck for you too?

 

[Endless]

Hi, Naomi!

I'm on Trileptal. It sucks too.

I'm still in denial sometimes. I have times where I think I'll "cure" my seizures somehow, and get off the meds. Nice dream, but not probable. Most people are on the meds for life.

My seizures still aren't stable, so I see my epi every month or two. Hope that cuts down soon.

 

[epileric]

Welcome Naomi55

It's always good to have new members.

Will a neurologist ever try to wean me off my meds again, after this failed attempt?

I would only expect a neurologist to try to wean a client off of their meds after being seizure-free for at least a year, maybe 2.

Does tegretol suck for you too?

Oh yes! My memory is quite bad & my powers of observation are lacking.

As for accepting the fact that epilepsy is now a part of your life.... I don't think it's such a big deal but I've had it for all of mine. I'm sure that seeing what others in your situation (& there's a lot of them) are going through will help.

 

[RobinN]

I only talk to Rebecca's neurologist after a tonic clonic if I have a question or if she goes to the ER and they call her.

Rebecca was weaned off of her fourth med, and we decided to not try a fifth.
We moved towards alternatives and I am thankful we did that when we did. Her quality of life was slipping fast on medication. After neurofeedback and nutritional changes, she is managing quite splendid. Time of the month is still tricky, but she is managing without seizures for quite a few months now. Since January in fact.

I worry about when she becomes pregnant, but that is down the road, and something that we can prepare for. At least we will be observant.

Tegretol was Rebecca first med we tried, and the side effects of vision loss was not acceptable.

 

[Naomi55]

Thank you all for sharing. Endless, I hope you get more control over your your seizures as well... Mine take so much out of me, I really don't know how some people carry on so quickly afterwards.
Epileric, I think you have the power of perspective on your side in accepting your dx; I hope to gain more and speaking with more of you can only help. I don't know many medical dxs that require one to take a medication that turns them into a zombie and has a very good compliance record, you know? If the antihypertensives carried similar side effects as our anticonvulsants, there would be even more people on dialysis after their uncontrolled hypertension took out their kidneys.

 

[Naomi55]

Robin, I will be reading your blogs about your daughter's journey; do you know the impact these alternative treatments would have on her driving eligibility? Continuing to provide for my family is a major concern of mine. Congratulations on a good start to 2010! May your daughter continue to thrive without tonic clinics!

 

[Meetz1064]

I, too

have nocturnal tonic clonics, as well as 3 other types of nocturnal E. However, I am now on 4 types of seizure meds, which makes for fun at times, trying to remember things.

I AM under control though, and have NOT had a t/c in over 7 years now. Due to the fact that my EEGs still show the other types of E, I can't/won't be weaned off meds.

I DO adhere to a strict diet, and have for several years now. Originally it was to help control the seizures, and it does help do that. Now, it is also to deal with my celiac disease, but that's a whole different issue.

I don't take Tegretol (carbamazepine), but I do take Carbatrol, which is another form of carbamazepine. And yes, my memory sucks beans, too. There are days that I find my keys in the refrigerator. Found my phone in the freezer once--I'm still not sure how it still works.

Like Epileric, I've had E all my life, so I've pretty much accepted it--but yeah, once in a while--blue moon, I go through a phase where I just want to totally deny it. That doesn't last long though, because no matter what, I know it's still there. It's just a quirk that I was born with, and no one's fault, so I've got to take it, run with it, and deal with it. It's really as simple as that for me.

Welcome to CWE, by the way. You're already finding quite a few friendly folks here. My coffee is burnt, or I'd offer you some. Hopefully Buckeye will stop by with some decently made stuff.

The Library and Kitchen are great for information, the Padded Room is perfect for venting when needed. Robin's our nutrition guru, DrArvindr is a member studying to be a neurologist, and Bernard (Mr B) is our wonderful host at this great dinner party. Me, I'm just....hmmmm.....nutty? :bigmouth:

So feel free to kick up your feet, relax and have fun. And don't worry, we'll be here to lend an ear and whatever support you need, when you need it.

Oh, and if you haven't already--start a seizure journal. That'll help, too.

Take care!

Meetz
:rock:

 

[carlos.fonke]

.. I'm feeling REALLY dopey on the tegretol... And cranky! I know I suffered side effects before but it was better than the Dilantin and I had it in my head that I did NOT have a seizure disorder, so it was only temporary. Now it appears otherwise.

Sounds familiar. I hope you find meds that work better for you.

I've been on Carbatrol (time-released Tegretol) and phenytoin (Dilantin). After 5 years of Carbatrol and continued breakthrough seizures, it's obvious phenytoin works better for me. The side effects are stronger but I prefer them to seizures.

Although my previous neurologist was apparently content with breakthrough seizures for me despite the fact that I have had better control on other meds, I do agree with his attitude that you never get over E. Once diagnosed, a person will always have it even if they don't have seizures for years.

 

[Naomi55]

Meets, thank you for the introductions! Carlos, good advice about the journal. I know I need to find a new neurologist... My current provider likely won't even humor me. He's in for a surprise when he sees my list of questions I've developed since perusing this forum. I seriously suspect there's a hypoglycemic component to my E, as I've suffered from low blood sugars while awake and believe they've gotten too low while I was sleeping and unable to compensate.... I also have a positive Chvostek's sign (which is a sign for low calcium, and a possible cause of seizures)... It's worth looking into anyway. I'm actually an RN, but my seizure education consisted of "don't put anything in the pt's mouth and they might be confused when they wake up."

 

[Nakamova]

Hi Naomi, welcome!

The low calcium might possibly stem from the Dilantin (although if you were only on it for a short time that's less likely). Low blood sugar seems to be a common trigger; it certainly is one for me.

I've tried twice to go off meds (under doctor supervision). the first time my neurologist had me quit cold turkey (which I've since learned is a huge no-no), with no success. After a few seizure-free years, I tried again, tapering very slowly, and this time, remained seizure-free for about 6 months. Right now, I'm stable on a relatively low dose of Lamictal, but I hope to try tapering off again sometime in the future, perhaps after 5 seizure-free years. If I can afford it, I'll try neurofeedback and see if that makes a difference.

 

[RainbowBrite]

Does tegretol suck for you too?

I'm also on Tegretol (soon to be switching over to Carbatrol), and I have many problems with memory (short term and long term). It doesn't tend to make me a zombie, but I guess it's kind of hard for me to pull apart what med is causing what side effect anyways (I'm on 10 total diff. medications). It was more of a pain when I had to take it 4 times a day as opposed to now 2 times a day though.

 

[Jbo57]

I Too

Have nocturnal seizures. I've been on Dilantin since 1982 or there abouts. When I was younger I would get careless about taking my meds, and it wouldn't be long until I would seize. My seizure's got to the point where they only happen about every 2-3 years. However, the post seizure affects of my last one has really thrown me for a loop. I guess with age comes wisdom. My neurologist is putting me on Lamictal to suppliment the Dilantin. Hang in there, the one thing I've learned is that you are among friends here.

P.S. I'm fighting off the temptation to be jealous of all you folks who have access to an epiologist. Don't know that they would be better than a neurologist...but they sound better.

 

[Elsie]

Hi Naomi. I've also had a seizure while pregnant. What a scare that was.

I was taking Tegretol about 15 years, and my problem with that was my white blood count would go dangerously low. Then it would recover a little, then back down, like a yo-yo. If I got sick (I always caught the grandkids' germs) it would take a long long time to get better.

Now I'm on Trileptol and get over illnesses just like ordinary people.

I also had it in my head I didn't have Epilepsy. My parents didn't like that diagnosis. But I made myself crazy thinking I had mental illness or smething worse like a monster in my brain. So accepting that I have E has been freeing to me. I know what it is, I can deal with it.

I've not been successful getting off meds. Everytime I either wasn't compliant or tried on purpose to get off I'd relapse. So now my dr. and I have agreed not to try again. It is what it is. Someday I have hope they will find real cures or at least meds that are easier to take.

 

[sandi]

join the club

You are now part of the Hide and Deny Club. Welcome - on that road for 10 yrs now, I have belonged to many forums and done much reading and research and I have found more info here than anywhere.
WARNING! Accepting your condition and Not being in Denial may take a little longer to fully implement!
Be prepared or the ups and downs.

 

[Naomi55]

Sandi, thanks for welcoming me to the club!
I have to say, there is a different tone here than in any of the other forums I've happened upon and it is truly inspiring. Hearing from those of you taking more meds than me, having more seizures than me... It's inspiring. I hope that doesn't sound patronizing, I have truly been enriched by the openness you all show here... I feel ready to live my life in a more meaningful way... For today, at least, that means I need to stay conscious. I've set alarms on my phone to take my meds. It's a tiny step, but at least I'm moving in the right direction (today).

 

[Endless]

Hey, JBO,

There is one regional epilepsy center in Arkansas. There is sure to be Epi's there:
http://uams.edu/neurology/

Though, this may not be near you.