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        New Message Board Archives >> 2003 Posts >> Clusters in women
        
(Message started by: notaman on Dec 11^th, 2003, 7:17pm)

Title: Clusters in women
Post by notaman on Dec 11^th, 2003, 7:17pm

I've been misdiagnosed for over 8 years from multiple doctors and a Neurologist because I am not a middle aged man and can't possibly be having clusters. When I found this site I couldn't believe that other people were feeling the same way I am. Being scared to sleep, aging 10 years in a week, crying and screaming and driving to the ER. Even the ER docs never help. I'm in my 8th annual winter cluster, and still am not making any headway on getting a diagnosis! Every doctor I've seen is perplexed and can't understand why my headaches don't fit the normal migraine. Because they aren't migraines!! But if one more person tells me to take a pain pill on onset and take a nap, I may kill them. My response is always "I WAS ASLEEP, I can't go back to sleep!! I get my headaches in my sleep, same time of night, every winter, only in the winter!" HELP!

Title: Re: Clusters in women
Post by Little Deb on Dec 11^th, 2003, 7:33pm

Girlfriend, you have hit the jackpot! Cause we all understand!

I am in Raleigh,NC and have found a great neuro if you want to drive here. And, we are having a clusterhead get together at my house Jan. 31st. Come meet some real clusterheads!

Email or instant message me anytime.

Welcome.

Debbie Hart
25 years of CH
.........and ALL WOMAN!!!

Title: Re: Clusters in women
Post by BlueMeanie on Dec 11^th, 2003, 7:39pm

Notaman.

Sorry to hear you are another victim to this terrible condition. Just wanted to say don't be upset because of the woman thing. Guys have just as hard of a time dealing with the medical profession. It seems nobody but the ones who actually suffer from CH's understand it. Welcome to Clusterville.

PF vibes comming your way !!

Title: Re: Clusters in women
Post by Paigelle on Dec 11^th, 2003, 7:54pm

I understand completely! My CH cycle starts in November. I hate the month of November, if I could just erase it off the calendar I would be happy. Good luck finding a doc. Read everything you find here and print information to take to your next appointment.

We also understand the fear of going to sleep. I hate that worse than anything. You just sit there in bed, dreading what is going to happen.

Title: Re: Clusters in women
Post by CHmess on Dec 11^th, 2003, 10:54pm

This web-site is one of the best medicines out there!!!

My favorite is when people say "well if it wasn't the last thing you think about before you go to sleep then maybe you wouldn't have them every night"
Like, don't you think if we could "wish" them away, we WOULD!!!! ::)

This coming from people who have never even had a freeze headache..... lucky bums!

Hang in there!!!!
Sending more PF vibes....

Title: Re: Clusters in women
Post by Charlie on Dec 12^th, 2003, 1:51am

Welcome and you're not at all alone. All of us have gone through the sleep is our enemy stage. Stick around. You'll find an awful lot of good ideas here.

Here's mine:

http://www.netsync.net/users/charlies/

Charlie

Title: Re: Clusters in women
Post by sherryberry on Dec 12^th, 2003, 1:58am

I've had them for about 31 years... hopefully yours will do what mine did... after a while they will start spacing out more.

I went from twice a year to once a year to now, once every two years... and if I don't get hit this February or thereabouts, I can up that a little!!

Sorry you qualify! :'(

But you found the best place in the world!!

Sherry

Title: Re: Clusters in women
Post by Linda_Howell on Dec 12^th, 2003, 2:32am

Don't you know?

Women don't get Cluster Headaches.

Cough cough, choke choke.

LindaH Chronic for 17 years now.

Title: Re: Clusters in women
Post by Paigelle on Dec 12^th, 2003, 7:54am

Nope us girls don't get CH. A Dr told me once that it was all due to my menstrual cycle. That is funny, because if that is true, then I only have that once a year in November.

Title: Re: Clusters in women
Post by sandie99 on Dec 12^th, 2003, 9:29am

notaman,

join the club! I just met a new neurologist yesterday and he was absolutely sure that I can't possibly have CH! And it turned out that I know more about CH than he does!

Welcome aboard and I'm glad you found us!!! ;;D

Best wishes & PFdays,
sandie99

Title: Re: Clusters in women
Post by thomas on Dec 12^th, 2003, 9:51am

Welcome aboard. If you have them in your sleep - melatonin is worth a try - I hope your cycle ends soon. :)

Title: Re: Clusters in women
Post by Bob P on Dec 12^th, 2003, 10:27am

Well, you know.

Thanks Linda.