Just Diagnosed

[Littlemama]

I was diagnosed last week, and have been trying to learn as much as I can about epilepsy. I am also learning what my triggers are. So far it feels like almost everything. I am on depakote and it is working good, although we are still working on the dosing.

I will be going in for more testing in the next couple of months. It is the one where they keep you for 24 or 72 hours. My neuro thinks I might also have a second condition called dystonia because a lot of my seizures are myoclonic. We think I have had this most of my life but it has been bad since march 2008. Before meds, I was having 50 grand mals a day. That number kept growing every week. I am nervous about the test because they will take me off my meds so they can video tape my seizures. I do not want to go through that again.

I am happily married. 14 years in June. We have 4 beautiful children. 12, 10, 9, 6. My family is so supportive. My kids go straight into nurse mode when they see signs of me about to have a seizure. I don't know what I would do without them.

I get bad twitches in my face and neck. Does anyone else have that?

 

[skillefer]

hi Littlemama! Welcome to CWE. I'm sorry to hear about the diagnosis, but glad to hear that you might have found a med that works for you. In case your neuro hasn't told you, you should be taking a folic acid supplement everyday. Depakote is a class D drug according to the FDA. In other words, there is a link between taking it and birth defects. So if there is ANY chance of getting pregnant in the future, you need to be on the folic acid. Also, let your doc know if you think you might want to have more kids, because that might actually make him change the med. Most AED's can cause some form of birth defect. But, 90% of kids whose moms take AED's are born perfectly healthy. So if depakote is working well for you, and you take folic acid daily, you may or may not need to switch meds. I was on depakote for a loooong time. My neuro told me to take 800mcg. folic acid everyday. And I did....even though I wasn't pregnant. Why? Because the longer you take it, the more effective it is, and most women don't realize they are preggers until they are at least 4-6 weeks along. So definitely take the folic acid. If they're going to switch your med, the hospital observation time is the perfect time to do it...so talk to your hubby and talk to your doc.

 

[Littlemama]

Thanks for replying

We for sure wont be having any more children. That was made permanent 6 years ago. Should I be taking those supplements anyway?

But I do have a question. I have severe body aches daily. The day after a seizure the aches become unbearable. Does anyone know if this could have anything to do with the seizures?

 

[Crystal11]

I get headaches after my seizures which are worse than migrains. For some odd reason I can get a migrain after eating hotdogs, as odd as that sounds hehe. Anyways, most postictal headaches can be wrose than migrain headache. Anyways, you might talk to your doctor about that. I plan on doing that as well- I usually take 6 Tylenol after a seizure and thats too much and not good to do. i take Tegretol 600mg and Keppra 3000mg and should be taking Motrin.
I hope you feel better soon and things are under more control. 50 GMs in a day is a lot! Is that considered Status when it gets like that? I sometimes will have 2-20 CPs/complex partials in a day but thats a real bad day for me.

Please take care.

 

[KellyD]

Hello! I take lamictal and my dr told me to take the folate regardless of wanting to be pregnant because it helps with cell regeneration, with your skin and everything. He also said if my son was on the same medication he would require it as well. I don't know anything about your medication but it may be worth asking, my neurologist wasnt the dr who told me about this!

 

[Littlemama]

I want to share a quick version of my whole story.

The craziest thing is that I have had this since I was very young. Yet I am 34 and just diagnosed. But all those strange things I went through as a child , no one ever knew what it was or that it was even anything at all. By the time I was in junior high, I started having more and more strange symptoms like passing out a lot. Then in high school I started getting headaches, muscle spasms, and my arm would hurt really bad. I had so many tests. I did have an eeg at age 15 that came up normal. As the years passed, the symptoms just got worse. I was diagnosed with MS May 2000. Then undiagnosed 2 years later. Finally a few years ago, I started getting quite a lot of twitching in my face but only at night. It progressively got worse through the weeks then would just come and go. After a year of that, one night I started having myoclonic jerks. My husband called 911 after 2 hours of that. I had an eeg a week or so later, and once again it showed normal except you could see my constant twitching that never went away. The twitching lasted 3 months. Then a month or 2 later the twitching slowly came back. I went back to my doc who diagnosed me with dystonia. He started me on topamax. The very next morning of my first dose, I had my first Grand mal seizure. That is where it truly began. We thought it was the topamax at first. But I went off it and they never went away, only got worse and more frequent. I was finally referred to a neurologist who ordered another eeg, and diagnosed me with fibromyalgia because of the severe body aches and tingling. This time it showed I have 5 different types of seizures. I only remember 2 or 3. Myoclonic, epileptic, ok I only remember 2. My arm still hurts me often and I just found out that is seizure activity as well. I am now learning that the fibro symptoms could also be epilepsy or the aura's.

I didn't share my whole story at first because it is very hard to think about. I am going through yet another diagnosis. Talking about it makes it more real, but I have decided I need to deal with it. My family and n-laws have always thought I was making everything up for attention. At least I had my husband on my side. That was all that mattered to me anyway. But I think some family members are actually coming around to believing me now.

Anyway, that is my story for those who are interested. Thanks for all of you who have replied. And crystal11, what do you mean by " Is that considered Status when it gets like that? "

By the way my name is Holly.

 

[Hollygirl6]

Wow little mama! You must be one of the strongest people I know. To go all those years and having doctor after doctor diagnose you with many different things it must have been frustrating. It is great that you are so strong to go through all of that and that you have all your family support, it really helps doesn't it. I find is wonderful that your children help and become your nurses as you are most likely to them. I also feel like you do at times, in the fact that talking about it and facing it makes it more real to life. You are awesome and if we all speak out about and support each other we can help all to better understand and live our life in wonderful ways!

 

[Littlemama]

Thank you so much Holly for saying that I am strong. My husband tells me I am also but I sure don't feel strong. Maybe I am more so than I think. I bet you are stronger than you think as well. I beleive most people are. Is this site helping you at all? I sure hope so. How is you personal support system? You mentioned you have a few friends, how about family?

 

[LuvMyTwins]

Welcome.....

Well, Hello LM-----

What a story you have! I agree that you are a very strong person---what a time you had. Yet, with all negatives, we can find positives. I hope that you can find yours.

I also had the VEEG, but my medicine was not touched. Although they would have preferred me to have a seizure, I did not and was there for 5 days. Yet, they got a lot of information from just watching. You may want to ask your doc if it's absolutely necessary to be taken off all meds---that's such a shock to the system!

If there's one thing that I (as well as many others) have learned it is to be your own advocate. You know yourself much better than your doctor. There is a lot of information out there about seizures and their causes. For example, I have grand mals, but it was only recently that I found out that I'm hypoglycemic which is a huge trigger for seizures. So, do your research!:soap:

I have a set of twins and, like you, don't plan for anymore. Yet, I do take folic acid (1 mg) on a daily basis as well as a host of other vitamins. There is a lot of research out there about vitamin deficiencies and seizures. So, speak to your doctor about that.

Welcome to the forum. This is a great place with a ton of really intelligent and experienced people!---LMT

 

[alivenwell]

Welcome!

Wow! That is absolutely incredible. It's awesome that your kids have learned to handle this well.

For me, a great stress buster is walking my border collie mix and getting fresh air. Stress is my huge factor for me.

If you have warm weather, it might be a good idea to obtain decaffeinated sports drinks for both yourself and your kids. They could help prevent the low sugar level and also keep electrolytes at an optimum level.

 

[KaySara]

I am just now reading your messages and yes, it helps to realise there are many more with epilepsy out there... I was 45yrs old when I had my first grandmal and had 3, then was mal free for years and continued to take medication and drive my car. I am now in my early 60's and have not driven for perhaps 10 years, much to my frustration. I have seizures but during my sleep. I dont know when they occur or how often but my husband is awakened and informs me next day. I am also aware of the fact because I would be very tired for 24hrs and have not appetite. That is how it seems as I get older. I keep having my medication changed and experimented with but it hasnt steadied it as yet....but it also hasnt slowed me down. I do live my own life as much as possible, travel alone, using public transport etc. One has to live....dont we!