More than one Nuerological disorder

[Byron]

First off, I would like to say if my heading was not worded in a appropriate manner for some of those, I apologize.

Let me explain myself first. Two years ago I had my last Tonic Clonic and it was the worst one to date. Landed my behind in the hospital and a world of hurt. Well, after running multiple test my Nuero. Doc. found signs of Chiari Malformation. Sure enough after a stint in UCSF, I was diagnosed with it.

So my question is, besides Epilepsy does anyone have any other Nuerological conditions? If you rather not say you dont have too. They dont have to be related either, Im told both of mine are not.


Byron

[TeeTees]

First off, I would like to say if my heading was not worded in a appropriate manner for some of those, I apologize.

Let me explain myself first. Two years ago I had my last Tonic Clonic and it was the worst one to date. Landed my behind in the hospital and a world of hurt. Well, after running multiple test my Nuero. Doc. found signs of Chiari Malformation. Sure enough after a stint in UCSF, I was diagnosed with it.

So my question is, besides Epilepsy does anyone have any other Nuerological conditions? If you rather not say you dont have too. They dont have to be related either, Im told both of mine are not.


Byron

Hi Byron,

Let's just say that I don't have any that I'm aware off.

I did have Meningitis was I was about 9 years old, but that's the closest I've ever come I think.

Erm.....what's Chiari Malformation ? (hope you don't mind me asking)

[Byron]

I dont mind you asking at all. Its really hard for me to explain and I would do a bad job. So let me give a link instead.

http://www.ninds.nih.gov/disorders/c...ail_chiari.htm

When I am 30 I will probably have to have the surgery to correct it. I have terrible migraines and some other side effects I dont care so much for. But it doesnt hinder life so much. Imitrex injections are life savers!

[TeeTees]

I dont mind you asking at all. Its really hard for me to explain and I would do a bad job. So let me give a link instead.

http://www.ninds.nih.gov/disorders/c...ail_chiari.htm

When I am 30 I will probably have to have the surgery to correct it. I have terrible migraines and some other side effects I dont care so much for. But it doesnt hinder life so much. Imitrex injections are life savers!

Thanks for the link Byron....it's always good for me to get a better understanding of these conditions. Real sorry though to hear that you have to be suffering from this....life can be a real bitch at times. Still, glad to hear the injections are doing their job

[RobinN]

Byron - I have a relative that had the surgery as a young baby for Chiari. She is doing very well now.

As for migraines they are being related more and more with seizures these days. I find many references to that effect. Not sure how they could rule out completely that your two conditions are not. Migraines run in my family. Mine are hormonal, and my daughter has hormonal onset of seizures. Seems likely they are connected to me. Call it my motherly instinct. Not something the doctors put much faith in.

[Byron]

Byron - I have a relative that had the surgery as a young baby for Chiari. She is doing very well now.

As for migraines they are being related more and more with seizures these days. I find many references to that effect. Not sure how they could rule out completely that your two conditions are not. Migraines run in my family. Mine are hormonal, and my daughter has hormonal onset of seizures. Seems likely they are connected to me. Call it my motherly instinct. Not something the doctors put much faith in.

I agree about the Migraines being related to seizures and Ep. The ones I feel are related to Ep. are very sharp and feel like they are behind my eyes. The Chiari migraines feel much more dull and more towards the rear. While getting testing the Dr.s were very interested in seperating the headaches and it got very confusing and exhuasting at times.
If you dont mind me asking, when u have yours, where do u feel the pressure/pain?

Im glad to hear the surgery worked for some one! I hear it has a very high success rate. Im just a lil worred about someone going in the back of my head. Eh, oh well.

[POSITIVEPERSON]

Byron I hope your operation will clear up the CHari. Sorry you have to endure it.

I have an under active thyroid thanks to going toxic so many times on the anti-epileptic drugs.

Now I am treating the epilepsy and thyroid with homeopathy and I am doing so much better!!!!!!!!

Riva

[Byron]

Thank you.

Im not too familar with the homeopathy. But, I will read into it. I've been doing fine for over 2 years so I probably wont jump into anything new. But I love to learn new things and see how people do with it. For so long It always seems like Iv'e been trying to tell people about epilepsy and this and that. Finally I get to hear things from other people who can relate!

[RobinN]

Byron - mine begin with the dull ache at my shoulders and up into the base of my skull then if they progress they are acutely behind the back of my left eye. I use to have them for 30 yrs. I have tried almost every migraine med possible, and most worked for a while. About 1.5 yrs ago I met a doctor that suggested that I try magnesium and COQ10. I have not had a migraine in over a year. (unless I let up on taking my supplements... you know the times you feel indistructable). Mine use to last for up to four days.


I don't know... tell me if I am wrong. But this sounds an awful lot like the word migraine could be exchanged with the word seizure. Also, be careful to listen and hear that they don't know why they occur.

http://video.about.com/headaches/Migrane.htm

[RobinN]

I just found this educational site about Chiari Malformation. I learned a lot.

https://www.x-plain.net/modules_v3/x...Q=bm8=&MM=cA==

[brain]

First off, I would like to say if my heading was not worded in a appropriate manner for some of those, I apologize.

Let me explain myself first. Two years ago I had my last Tonic Clonic and it was the worst one to date. Landed my behind in the hospital and a world of hurt. Well, after running multiple test my Nuero. Doc. found signs of Chiari Malformation. Sure enough after a stint in UCSF, I was diagnosed with it.

So my question is, besides Epilepsy does anyone have any other Nuerological conditions? If you rather not say you dont have too. They dont have to be related either, Im told both of mine are not.


Byron

:hello; Byron

I can relate to you 1000000%!

I have multiple neurological disorders besides
Epilepsy, I've posted this on the EF and in
CWE all over the place.

I'm a "massive headache" to a Neurologist
(or a Epileptologist) ... as I just emailed one
of our Doctors here on CWE ~ my User ID
should be "Complicated_Case" - sad, but true.

It's frustrating to the core, especially even
more when you're BORN with it. And even
worse, being asked - like years ago, when
the Neurologist would confront to me and
ask me "What's abnormal or not normal to
you?"

NOW -how the heck am I supposed to answer
that? Everything was normal to me? I thought
everyone had it. That's why I never understood
them. And I still have difficulties understanding
them. But as I read more and more online and
while it's taking me forever to learn to
"SEPARATE WHAT IS NORMAL AND WHAT IS
NOT NORMAL"
It is a very hard thing for someone who's had
to live it all in their lives.

I was frightened and scared. I didn't understand
what all was happening. It was a very slow
process. Doctors here seemed to be very
"secretive" in disclosing much - all they did was
run battery of tests after another and never an
end in sight. But to me, I thought everyone went
through it. As I grew older, I learned everyone
did NOT go through it and I was 'different'.

I went through therapies, special classes, more
tests, on top of regular school classes, and it
was one thing after another, and of course,
Hospitals and Doctor's visits.

And it would go on and on; then even after I
was married, I thought was the "end of it" -
NOT! Think again!

They've got these "EASY BUTTONS" from Staples.

I often wish they have these "ESCAPE
BUTTONS" available from somewhere,
THAT WOULD MAKE MY DAY!