Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi... I'm a newbie in Ohio
        
(Message started by: kcorrigan on Oct 20^th, 2004, 4:08pm)

Title: Hi... I'm a newbie in Ohio
Post by kcorrigan on Oct 20^th, 2004, 4:08pm

I just wanted to introduce myself to everyone. My name is Katie. I just turned 29 and have been experiencing what I thought were migraines, or "cluster-migraines" since I was about 14 or 15 - half of my life.

Until today, I never realized that there was so much information since no one had ever been able to tell me much about them. I was told that I suffered from Cluster Migraines - something that there is virtually no information about.

For years I have been on Verapamil so that I don't get migraines year-round. However, I still get them once or twice a year. What I called "migraine-season". Oh, here we go again...

My symptons consist mostly of what I've read up about for the past few hours with a few exceptions. I know that we are all built differently and that accounts for a lot of it. For example, even though the pain is so bad, sometimes the only thing I can do is to lay down with a cold pack on my head and relax. I'm sure that it has nothing to do with the relaxaion or maybe it does. Who knows... Also, even though my pain occurs at the same time everyday, it tends to be worse about 2-3 hours after I wake up, and then again before bed. I have had trouble sleeping at night which is normal during my cycles but have only awoke with pain twice since they started on Oct 2nd (and both times have been early in the morning).

At any rate, my pain tends to come and go - something that Dr.s don't understand, especially when they are treating for migraines and have been for so many years. I'm 19 days into this cycle which means I've got just under 4 weeks left and haven't even hit the worst yet. Hopefully I won't this time. The Dr. has put me on Prednisone for the next 12 days as well as Indocin for the next 10. We are hoping for relief by Friday or Saturday.

Well, wish me luck. I'm off to get some stuff done around the house while the pain is on the mild side. Boy, these CH's sure are exhausting though. I hardly have energy for anything these days (not to mention that I've taken the week off work cuz I can't drive through the pain.)

Thanks to everyone who has made this site available. I cried when I found it today just knowing that I am not alone. (Wouldn't wish the pain on my worst enemy - not even an ex; but somehow find comfort knowing that we're all in this together, lol).

Title: Re: Hi... I'm a newbie in Ohio
Post by karma on Oct 20^th, 2004, 4:28pm

Hi Katie,
You'll find lots of help here. Read up on Oxygen it works great on killing the pain.
Melatonin, a store bought noscript med. works for allot fo people for the nite hits. 9 mg. an hour before sleep is a popular dose.
There is no such thing as Cluster-Migraines although you can have both.
Read Read Read and ask as many questions as you need to.
Good Luck

Title: Re: Hi... I'm a newbie in Ohio
Post by kcorrigan on Oct 20^th, 2004, 4:37pm

I figured the whole cluster migraine thing out. They just kept telling me that I was getting clusters and migraines and they were all the same symptons. Trouble is CH's really are completely different. So, long story short, I've been suffering with them for so very long, and have only been getting treatment for migraines which turns out I don't really have.

This is frustrating and difficult to deal with. My doctor told me today that I am only 1 of 3 patients that he has with CH. Fortunately, he's part of the Cleveland Clinic so I know that I'm in good hands and can get referred to some top doctors that deal with this. I guess it's never too late.

I also know now that I don't have to suffer silently anymore knowing that there are so many others out there that "feel my pain" so to speak.

Thanks again.

Title: Re: Hi... I'm a newbie in Ohio
Post by Charlie on Oct 20^th, 2004, 5:04pm

Welcome Katie.

Amongst all the nonsense here, this place is full of good ideas about handling this horror. Keep looking around. You have some reading to do.

About the hardest thing is to convince others that this is not what they think of when you say "headache." On this, here is a link to a letter and description of just what clusters are. It's worth printing:

http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/note_colleagues.cfm&added=04/01/04&code=CB

Charlie

Title: Re: Hi... I'm a newbie in Ohio
Post by Ronny on Oct 20^th, 2004, 5:39pm

Hi Katie,

It's important you have a good doc who knows his job and CH.

I 've read you're on verapamil, do u use any abortive like imitrex or oxygen?
Have you read all the info on the left side of this screen?

Ronny.

Title: Re: Hi... I'm a newbie in Ohio
Post by Valerie on Oct 20^th, 2004, 5:42pm

Hi Katie!

I'm in Ohio too - I'm in Dayton. Are you in Cleveland?

Sorry you have to deal with these, I've been dealing with them since I was 12 and I'm 36 now. This site is the best :) There is so much information here, almost more importantly is that we understand. A lot of doctors don't know anything about these, at least yours admits it and is hopefully willing to learn.

Oxygen has worked great for a lot of people, I have a neuro appt in November and I'll be asking for it.

Good luck!!

Valerie

Title: Re: Hi... I'm a newbie in Ohio
Post by kcorrigan on Oct 20^th, 2004, 6:06pm

I've been on Imitrex for years. Started with the pills and then went to the nasal sprays. My DR won't give me the shots - he thinks that I'll take them too much and doesn't even like me taking the spray anymore. I'll go through a box of them in 5-6 days and they don't even work that well for me anymore.

Today he put me on Prednisone and Indocin so we'll see how well that works.

Title: Re: Hi... I'm a newbie in Ohio
Post by Biker on Oct 20^th, 2004, 8:46pm

Howdy,
Sounds like your on the right track with your neruo. I was pretty lucky. My very first neruo hit the nail on the head the first time. I went to the headache clinic at the University of Cincinnati. When the insurance ran out, I went to another neruo at a hospital right next door to the headache clinic, and that quack tried all kinds of stuff that didnt work. The neuro at the headache clinic also suffers from Cluster Headaches, so he knew from my description what I had, yet still ran a series of tests, and tried different meds, and did a great job for me.
I still get quite a few headaches, but nothing like before I got treatment. They are just as painfull, but they dont come quite so often. Oxygen is a great way to abort (for me anyway) if I start inhaling it at the first sign of an attack or shadow.
Welcome to the board. I hope you find a cocktail that works for you.

Title: Re: Hi... I'm a newbie in Ohio
Post by nani on Oct 20^th, 2004, 9:00pm

Welcome Katie. Sorry you are here. We are all different as you will see. I also don't get hit at night, but don't sleep well during a bad cycle (I'm a chronic with more intense cycles). I also lay down with ice and the closest thing I do to a "dance" is rocking, or pacing. Hang in there. If you stick around you will find the most supportive, understanding and hilarious people you have ever known. :)

Title: Re: Hi... I'm a newbie in Ohio
Post by angel-ache on Oct 21^st, 2004, 12:07am

Hi Katie!

You will find that we both started about the same time, I was 14, and now am 27 years old. I too just found this site. (my getting to know ya is '13 years now'). I feel like I am getting a upper hand since last week, when I found out what I too have been suffering from.

I was said to have TMJ headaches and Migraines with a sinus infection. Now, I know! And the important thing is now I can prevent and abort.

My doctor wasn't too sure that it is CH's or not. So I did my own research. I printed out the 'oxygen infor' to the left, and http://www.postgradmed.com/issues/2001/01_01/dalessio.htm this site to give to my doctor. He was really understanding, and glad that I found this site for support. He took the info and it helped me get what I wanted, O2.

I live in small fishing town in Alaska, no neuroligists in my neck of the woods, and I hope your situation is much better.

Keep in touch Katie. Don't be afraid to post any q's or concerns. Or even just rant a bit, drop me a private message when ever you want. We are all here for each other....no one understands as much as we do.

Angela

Title: Re: Hi... I'm a newbie in Ohio
Post by vig on Oct 21^st, 2004, 8:53am

ahem, yes, Welcome!