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(Message started by: HeadacheQueen on Apr 26^th, 2004, 6:40pm)

Title: Hello
Post by HeadacheQueen on Apr 26^th, 2004, 6:40pm

I tried to do this last night, and it said my message was too long and then deleted the whole thing, so I am trying again now.

My name is Alicia, and i am 25 years old and have suffered from clusters since I was 21. Its the usual, blinding stabbing pain that starts in the left temple and drives me mad, the only difference is mine isn't an ice pick, its a railroad spike. I was diagnosed 3 years ago, by my nuerologist and after my CAT scan. (I had told my other doctor that a bullet to the head would feel better than my headaches, I think I scared him). But I was diagnosed with severe tension headaches, migraines and cluster headaches. He was sure to stress the word SEVERE, like i couldn't figure that much out on my own. I get my tensions and migraines from my mother, and my clusters from my dad, altho his are very mild in comparision. He gets one and goes to sleep for 5 minutes and its gone. My longest stretch was 5 months... I get one headache and it triggers the others so I have this neverending cycle of headaches. Even when the clusters fade, I have a migraine anyway so I can't tell where one stops and the others begin. Its enough to drive a person mad.

So I was put on Topomax to try to control them all, and that worked great for the two months I was able to take it, minus the side effects. I went 2 years without any headaches too, but then things got a bit stressful in life and the tension headaches started. I suppose it was inevitable that the others would come back too. I had my first cluster in 3 years last night, and I've had one trying to sneak up on me today. I've been lucky, they are mild so far, but I know soon enough I will be in blinding pain. I'm just glad that I will be getting health insurance in the next few weeks.

So well, I guess that's the basics. I thought it might be nice to come here and get some help, as well as offer any help and suggestions i can for those who suffer as well. Thanks for listening!

Title: Re: Hello
Post by Melissa on Apr 26^th, 2004, 7:48pm

First off, let me say hello and welcome to ch.com HeadacheQueen. Secondly, I am very sorry to hear of all the pain you've been suffering from, it is very tragic to suffer from clusters to begin with, in addition to ofhter headaches on top. Have you researched the site yet? Click on all the buttons to the left of your screen, and do lots of reading to become more educated on clusters and related info. All in all, I hope that your neuro is reliable and educated, and helps you in anyway they can with your condition(s).

Thirdly,

Quote:

and my clusters from my dad, altho his are very mild in comparision. He gets one and goes to sleep for 5 minutes and its gone

I'm sorry, but this does not describe cluster headaches at all. There is no way I, or any other sufferer I can think of, can "go to sleep" while in the midst of a cluster attack. Perhaps he has something else...

Anyway, nice to meet you and good luck to you!

:)mel

Title: Re: Hello
Post by Redd715 on Apr 26^th, 2004, 9:17pm

Alicia,

Hi and welcome. I'm so sorry about your pain. But I just HAD to chuckle when you said they stressed the word "sever" when talking about your pain. The doctor that gave me my first shot of imitrex for what was then diagnosed migraine corrected my then husband when he asked.

Hubby: You sure this is a migraine?

Doc: Well I'd have to diagnose these as Massive Migraine...

I was believing that for 13 years....I'm sorry but it just made me chuckle

Title: Re: Hello
Post by UN_SOLVED on Apr 26^th, 2004, 10:10pm

on 04/26/04 at 18:40:56, HeadacheQueen wrote:

He gets one and goes to sleep for 5 minutes and its gone.

NOT CLUSTERS

on 04/26/04 at 18:40:56, HeadacheQueen wrote:

Even when the clusters fade, I have a migraine anyway so I can't tell where one stops and the others begin.

The rest of us can tell. Clusters are much different than a migraine !

Hope you find some answers and some relief !

Unsolved

Title: Re: Hello
Post by HeadacheQueen on Apr 27^th, 2004, 1:43am

Well, when you're head feels like its on fire and is going to explode out of your left temple all the time, its kinda hard to distinguish anything let alone one headache from another. I agree that my clusters are very different from a migraine, but who can tell what's what when your head hurts so much? They all blur together... all I feel is constant stabbing pain. They feed off each other until I just want to die.

Yes, my dad's are very mild, and also he has a sleeping disorder and can sleep thru anything. As for me, there is no way I can sleep with a cluster at all, no, I spend my nights crying and screaming, punching myself in the head, threatening to throw myself out a window unless someone or something makes it stop immediatly. I usually just sit or lay somewhere rocking myself violently and cry. Its sad when you welcome a migraine, as long as a cluster doesn't come with it.

Title: Re: Hello
Post by Charlie on Apr 28^th, 2004, 7:24pm

Welcome and I'm sorry you have do deal with such severe headaches. I sincerely hope what you have are not clusters. One sure way for me to tell is that clusters will wake you out of a sound sleep and when getting hit, you cannot sit still or rest. That just isn't in the cards.

Let us know how you are doing.

Charlie

Title: Re: Hello
Post by 9erfan on Apr 28^th, 2004, 7:41pm

Welcome to the board.

We're not trying to insult you but I agree with Unsolved, your Dad doesn't have clusters. There's no such thing as "mild clusters". If he's got "mild" headaches, they are some other kind of headache (there's SO many out there).

But please don't think we're trying to chase you away....some of us (including me) tend to be brutally to-the-point. What other meds have you tried?

Have you gotten some O2 for youself? That is a must-have!

Virginia

Title: Re: Hello
Post by TxBasslady on Apr 28^th, 2004, 10:33pm

Welcome to the board.

Tons of info here. You need to take the time and read..read..read.

Hope you get what you need to handle the beast.

PF vibes,

Jean

Title: Re: Hello
Post by Superpain on Apr 29^th, 2004, 5:10am

Hi Alicia! Welcome!

Tell us about your preventative and abortive meds and techniques and we might be able to steer you towards help.

Sorry, but I had to laugh at the "severe clusters" myself... [smiley=laugh.gif]
I suppose there are different degree's to which different people suffer. And maybe I'm biased because my last cycle went for about 2 yrs that peaked out at about 20 headaches a day that absolutely fucking KILLED me... But clusters by defintion are SEVERE!
Kinda like saying you have extremely red blood.

Does this doc deal with many ch cases?
I agree that your dad did not/does not have clusters... No way.

Ever tried xanax for the tension headaches? It's pretty hard to get tense with xanax... :D

Seriously, read up and arm yourself with all the knowledge of this site and you'll be much closer to relief.
And we're here for you! ;)

Title: Re: Hello
Post by eddie on Apr 30^th, 2004, 5:07am

yea my name is eddie im new to the site i know i
just found what the beast was but i have this crap
chronic a while now im reading this place like crazy yea
i went to the er the other night got 3 shots of tordal
or somthing it didnt work told them this was ch they
looked it up gave me some o2 / 20 mins i started to
smile 3 days later here i sit with it trying to sneak
back in next week i go to the neruo i have 3 xanax
and i still cant go to sleep for my head throbbing
have no tension right now but the demon is back
cant wait to get some o2 / i mean this has been
chonic for years / but im so glad i found this site
i am electrician of 21 yrs should get my neruo to
say im disabled right now cause working 277/480
live is not safe for me right now i know this my head
hurts so BAD i cant focus but after i get this to
ease off some i want to get back to work.
PLEASE REPLY ET

Title: Re: Hello
Post by Cathi04 on Apr 30^th, 2004, 9:13pm

aww, Eddie....the beast is really messsing with yer life! I really hate that!! And, yes, it is very important that you have a clear head when you are working with live elect....I'm sure you know.....ya gotta read, read, read, man!! There are plenty of tips there for you...and ask questions!!!! This is a great group with a LOT of info for you!! Most of all, here is where you will find support, encouragement, and the occasional laugh, jsut when ya need it most..
Sorry you need Clusterville, but glad you're here...get cozy...
Be PF, Eddie!
cathi

Title: Re: Hello
Post by Charlie on May 1^st, 2004, 7:02am

Welcome Eddie and I'm sorry you have to deal with this horror. You will find a lot of good ideas for dealing wiith clusters and support here. You might try very vigorous exercise when getting hit. It has worked for some. Also, if they wake you up, I found I had fewer nocturnal hits when I slept in a recliner.

Here is a link to a technique that worked for me:

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