New epilepsy doctor?

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jzavar

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Hi, I'm new here. My story- I had a 2lb brain tumor removed in July 2010 about six months later I was diagnosed with epilepsy. I'm 21, and before my surgery my hormones were so messed up I wasn't having a period. I know that's what's causing my seizures, or at least the main contributor. Every seizure I've had, my period has started the day before or the day after. Problem is, my epileptologist doesn't listen. I'm just a number and what I say and feel doesn't matter; my hormone theory is just shoved under the rug.
So I'm looking for a new doctor who will give me the time of day and preferably looks into hormones first. I looked on the list and am thinking about Dr. Lisa Caylor at Swedish epilepsy center in Seattle. Or Michael Elliot at Virginia mason in Seattle. Anyone ever been to one of them? Opinions? Others that you would suggest? I'm in the Seattle area, any help would be greatly appreciated! :)
 
Welcome to CWE, jzavar!

I can't answer your question about neuros in the Seattle area; I just wanted to say that you are not alone in having a doctor dismiss your theory that your seizures are triggered by hormones. Even though it's well known that hormones can most definitely cause seizures - they are called catamenial (spelling?) seizures - many doctors either don't know about them or just ignore the facts.

My seizures were also caused by a brain tumor, but they only occurred during my period. Fortunately, I haven't had any seizures since my brain settled down after tumor resection surgery, but I continue to take Keppra because of the scar tissue which is still a seizure danger.

BTW, wow! a 2 lb tumor! I hope that that was whole tumor and that you are now doing well aside from the seizures! Fingers crossed that you can find a good neuro who will listen to you and help you get them under control.

Good luck and take care :)
 
Hi jzavar, welcome to CWE!

Studies show that hormones may play a role in 40% of the cases of women with epilepsy, so for your epileptologist to ignore that possibility is frustrating to say the least. You're doing the right thing in looking for a doctor who will listen and respect your observations about your own body. I'm not familiar with neuros in the Seattle area, but if your doc needs convincing you could show them this http://www.internalmedicinenews.com...lls-some-intractable-catamenial-seizures.html or this http://professionals.epilepsy.com/wi/print_section.php?section=hormones_catamenial.

Best,
Nakamova
 
Travel Bug- What type of tumor was it? My hormones are likely what made my tumor so big so fast and they normally only happen in women going through menoupause. So you don't have seizures now? (The meds are just to be safe?)

Nakamova- Thank you much! I have an apt next month with my current doctor, if I don't find a new one by then I'll bring those with me. I really really really hope I have a new one by then though :)

Thanks guys!
 
I had (actually still have to a certain extent) an oligodendroglioma. It's low grade and very slow growing so it was probably there for years before my first seizure though no one can say how long for sure. Apparently, since it was there for so long with no symptoms, it was the change in hormones as I was becoming pre-premenopausal:razz2: that finally caused my brain to react to the tumor with seizures.

None of my doctors want to say for sure whether or not it would be safe for me to get off my Keppra, but since there is a bit of scar tissue left, and since I know other BT patients who have had their tumors removed and still have seizures, I'm playing it safe and sticking with my meds.

Again, good luck finding the right treatment. :) Actually, it might be helpful to have your Ob/Gyn work with your neuro. Early on, it was suggested that if I couldn't find the right AED, I should go to my Ob/Gyn and see what she suggested to help stabilize hormones to help with seizure control.

Take care!
 
Yeah, all of my doctors talk about getting me off my meds down the road, that's a very scary thought. lol I don't even want to think about that! I'd rather be safe than sorry.

Probably a very stupid question, but what's the difference between a gyno and an OB/GYN? I just started seeing a gyno, I don't like her or my epileptologist, they're communicating- but sad as it is, I have absolutely no trust in either of them. The main drug I'm on works amazing! No side affects, I only have to take it once a day, and I trust it lol. I'm starting birth control this month to level out my hormones- It should work? I hope, I'm not having seizures on the meds but I do get the warning before a seizure is about to start repeatedly through out the day.
 
gynecologist = gyno = gyn = all other female issues besides pregnancy

OB = obstectrics = pregnancy and all its aspects

gyno or an ob/gyn is usually one in the same. some gyno's don't do pregnancy, so best to find one that will cover all areas.
 
I haven't tried very many, mine's pretty easily cotroled but the others I've tried I've planned my own suicide... not a good thing and almost all of the other side affects listed... not fun not good. Lamicta XR it's perfect, I only have to remember to take it once in the morning... I'm so forgetful I can remember what I did yesterday a lot of the times... Well if I sit down literally sit down with a pen and paper and start wrighting the little things I can usually piece some of it together... but yeah, trying to get me to remember to take something twice a day is one hell of a problem. works great, no side affects, easy on the memory.
I'm also on a super low dose of topomax at night before bed- I was recently put on it, we shall see if this one makes me suicidal it could be to low of a dose though
 
I'm glad the Lamimcta XR is working well for you, but it sounds like you've had a terrible time with the others. I hope the small dose of Topamax works for you, too. Be careful! Make sure you have someone else looking out for symptoms, too. Keep us posted on how you're doing :)
 
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