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Old 06-18-2005, 01:43 AM   #1
pinkfae
Junior Member
(female)
 
Join Date: May 2005
Posts: 30
Update on me-- + a few questions!

Hey everyone! I haven't posted often, but I have been trying to post enough to keep people who may be interested up to date. Please read my other posts so I don't have to bore everyone with the story again

FYI, for those who don't know-- I have not been diagnosed with epilepsy, but I think it's still a possibility.

I had my tilt table test, MRI and EEG. My follow up apt with my Neuro was on Wed of this week. I go into her office, she sits me down and tells me everything came back normal. So, that's good I guess. So then she tells me that she wants to test me for arrythmia. I looked up the symptoms of this, and it is absolutely NOTHING like what I experience during one of my "things." Not to mention, my tilt table test was administered by a cardiologist and he said my heart rate, pulse, and blood pressure were all perfect! So, that pretty much rules out a heart issue doesn't it?
She also tried pinning it on depression. I'm sorry, but depression is not going to cause these funky things that happen to me.

Now, I'm beginning to put two and two together-- ironically, there is a thread at the bottom of this page about catamenial epilepsy and I'm wondering if this is part of my problem. Catamenial epilepsy is caused (well, in essence and by skipping A LOT of details! lol) by a lack (or very little) of progesterone around the time of menses. My "things" happen much much much more frequently around my period-- especially a week or two before it and the first week. Now, how ironic is this-- on the 3rd of this month I was diagnosed with Polycystic Ovarian Syndrome... a syndrome in which a person does not ovulate, which means that I do not produce any (or very little) progesterone! See where I'm going with this? It all kind of adds up!
I went on Prometrium (a progesterone pill) a few weeks ago and the "things" basically stopped! I would get the funny feeling I usually get before one, but the thing would never actually come. However, I was only able to take the pills for 9 days because on day 9 I had a very strange experience after taking one. I was sitting on my floor sewing, and all of a sudden my head felt very funny. I could barely see, I couldn't really move, I couldn't talk, and could BARELY walk.. I practically crawled to my computer to see if my boyfriend was online to tell him I needed help (my mom was out of town for the weekend), so I got on the computer and saw he was on and started typing away. Everything made perfect sense to me- but when I saw the conversation later when I was better I couldn't believe what it said! If i had wanted to write "I need help" it actually said something like "Et nfegh hrep" and the like. But, I remember typing it and seeing the RIGHT words. Weird, huh? So a few min later my little sister came home so I crawled to the living room to see her and I cried for over an hour, except I don't remember any of it. I don't know what that was, but my mom and (older) sister are saying it was a panic attack. May have been, they do run in my family.

Okay, so anywho-- does any of this sound right to anyone?
Also-- are EEGs and MRIs always right?
I just feel like someone is missing something! It's so frustrating to be the only one who knows how I feel and to not be able to explain it or have the Dr take me seriously! The woman is STILL insisting I'm "fainting" -- even though I never ONCE said I've fainted!

Good news though! I'm looking for a new Neuro!
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Old 06-18-2005, 08:12 PM   #2
kayakmom
Senior Veteran
(female)
 
Join Date: Dec 2002
Location: Dayville, Ct. USA
Posts: 778
Re: Update on me-- + a few questions!

I really feel for you. First I would call the Cardiologist and ask about a possible arythmia. He would be best to know if you need that additional testing.

My son has had epilepsy for many years. A lying doctor took away that DX a few years ago adn we have fought for help ever since. He is going to a cardiologist soon to rule out arythmia or syncope as a cause....

EEG can be NORMAL and a person can still have epilepsy. It just shows they did nto have a seizure DURING that time of testing. My son has had mildly abnormal and normal EEG (that is our problem. Even though neuros tell us that a normal does not exclude an epilepsy DX, they also say they have to See a seizure on EEG and get an abnormal one before they will rediagnose him...


Did you stop the progesterone for that one odd spell? I wonder if you tried it again to see if that medications did in fact cause it or not......

Having your cycle is a trigger for many women. Some will have seizures around the time they ovulate as well.


I am sorry the doctor is not taking your seriously. We know just how that feels. Keep pushing for answers....Any way for a second opinion?
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mom of 2 teens who have battled seiuzres.
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Old 06-18-2005, 09:55 PM   #3
ibeeshell
Senior Veteran
(female)
 
Join Date: Jun 2005
Location: California
Posts: 500
Re: Update on me-- + a few questions!

My seizures have been blamed on stress, as you can read on my post.

I too have been down the arythemia road, in fact I spent 3 days in the hospital on the heart floor attached to a rainbow monitor to rule out any problems with my heart. I have had two echo's and a doppler too.

My seizures do not show up on my EEG, so they are reluctant to say I have epilepsy.

I also feel that I am not getting the right answers from my Neuro. After reading many of the posts on this board, and doing some other research, I have decided I need a second opinion.

I understand your frustration!!

Shelly
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Old 06-19-2005, 12:17 AM   #4
pinkfae
Junior Member
(female)
 
Join Date: May 2005
Posts: 30
Re: Update on me-- + a few questions!

Thank you both for your replies!

Kayakmom- Yes I did stop it after that strange episode, so we're just assuming it's from the pill. I have some pills left over, but I cant really take them again because it's used to induce a period and right now I don't need to. I am definitely going to ask my new gyn about that reaction though. I'm on a "new doctor" rampage I've replaced two in about a month lol
I am sorry to hear you're struggleing with getting your son a correct diagnosis. I can't help but to wonder if there's an easier way to diagnose someone with epilepsy. It's kind of ironic that I keep seeing people with epilepsy saying that they were checked for arythmia and syncope (that means 'fainting' doesn't it?)- the last time I saw the cruddy Neuro is when she told me I was going to be tested for arythmia. And on the note she gave me for the test, it says "syncope" as well.
I pray that they find the answers for your son soon!!

ibeeshell- I'm also sorry to hear that you're having problems being diagnosed as well! Seems like a trend -- no one gets a real diagnosis until they catch one, huh? I hate this so much because I feel like my Neuro thinks I'm just making this up for the heck of it. No one is taking me seriously, and it makes me even more upset that people think it's nothing important and something I will 'grow out of.' Like I told my mom, I know my body better than any doctor does. I don't care if he's spent 15 years in med school, it's still my body and I'm very in tune with it. Now I may not have the liscence to diagnose myself but I can tell someone what I FEEL.

Second opinion is hopefully coming soon! I just got a referral to a new Neuro, and hopefully he will be able to help me.
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