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        New Message Board Archives >> Oct-Dec 2003 >> So I'm not alone
        
(Message started by: Ozuser on Oct 5^th, 2003, 8:47am)

Title: So I'm not alone
Post by Ozuser on Oct 5^th, 2003, 8:47am

Hello all,

You have no idea how good it felt to find you guys here. I have been SUFFERING with these headaches for 21 years now. I first got them at 16. They were chronic for the first year, which was pretty devastating at that period in my life as I was mad on sport, then for 5 years or so they came and went. Chronic again around age 22-24 and off/on since then.

I was diagnosed as having sinus problems the first couple of times and medicated for that. Eventually I was diagnosed as having migraines and have lived with that theory ever since. Until today. The letters from the people on the homepage were so real to me. So I suffer from Cluster Headaches....mmhhhh.

Since no one has ever really given that much of a toss about MY headaches, and because I feel at least you guys here can understand me, I'm going to vent, GO ME!!

I am in a phase at the moment that has so far lasted 2 months and is still building. I haven't had the 'completely unbearable' ones that rate 9-10 on the 'kip' scale yet, but I'm sure they aren't too far away. I'm scared to go to sleep tonight because I know what's going to happen. I've had 4 already today (one for 4 hours) and there's one sitting way back there snickering at me now, just waiting for me to fall asleep, if it waits that long lol.

I, as I'm sure you all do, often battle with it in my head and have always thought of it as it's own entity that laughs and pokes at me trying to make me snap, level 10. 21 years of crying, head banging, running, push uping, tying things around my head, burning my head with hot water or hair dryers, stretching, bending, mood swings, embarassment, depression and momentary fucking insanity!!. When they're not around it's good, really good, but when they come my life gets turned upside down. I am married with 3 kids, manage a telecommunications company and live a fairly hectic lifestyle. And then it all turns to shit....for a while.

I studied massage therapy for a few years and was quite amazed to find that most of the pain from my headaches was actually coming from a group of muscles around my neck and shoulders, along with the temporalis on my head. If anyone is interested in muscular reffered pain type 'myofascial trigger points' into google and you should find plenty of info on it. Mind you, I still can't get rid of them lol, but it's interesting. I can replicate all of my headache on anyone to show them what it's like by manipulating different muscles. Try it, find a spot on your trapezius near the base of the neck and about 1-2 inches towards the shoulder. Find a spot that is tender to squeeze. Now pinch the muscle between your thumb and finger as hard as you can on the sore spot. Where does it hurt? Behind the eye on that side. Why do these 5-6 muscles from the trap to the small occipital muscles at the base of skull all choose to reffer their pain pattern at the same time for the same duration has got me stumped. But I am convinced that it is relevant, somehow. The way they come on so suddenly and go just as quick is weird. We all know when the grip is let go don't we? I know the instant that the h/a is finished.

I could rant for ages still but won't lol. Sorry for the long post but it's been 21 years in the making and believe me, this is the very short version lol.

Cyas
Joe

Title: Re: So I'm not alone
Post by BarbaraD on Oct 5^th, 2003, 9:06am

Joe,
Boy, you've been keeping that bottled up haven't you? LOL!!!! Welcome to Clusterville.... And yes, we DO know how you FEEL to find us... We ALL felt that way when we found US.... Finding someone who KNOWS how you feel... it not something that can be explained but it's there....

Have tried the "reflexology". Had an aunt that was in that and several times she stopped a hit on me by doing my "feet". Didn't work all the time, but a few times. I've tried the pinching between the fingers and stuff, but never got that to work right. Don't think I'm doing it right. Hurts like the devil, but never stopped the pain for me. May have been too far gone at the time.

go to the left and read our archives. I think between the 1000+ of us, we've tried about EVERYTHING there is to try. Some of the things worked for some - some worked for others and some were "snake oil" for all.

We have a theory here -- if it works -- DO IT!!!

Glad you finally found us. Wishing you lots of PF days.

Hugs BD

Title: Re: So I'm not alone
Post by Chia on Oct 5^th, 2003, 9:24am

Hi Joe....WELCOME ;) I am the wife of Charlie M. (there are 2 Charlies on here ;D) and we are also NEW to this site (about 2 weeks) and yes My Husband has been suffering for years with this condition that at the time to us had no name...Through the information & the support of the wonderful people on this site Charlie & I have learned so much and are now persuing the different types of treatments that are mentioned throughout the site. AND LET ME TELL YOU....They work!!! Especially the 02!!! 8) Check it out...I don't mind having that big ugly tank in my bedroom as long as Charlie gets some sort of relief..and he does...The oxygen has not gotten rid of the CH but it has lessoned the pain from 3 hours to 20 minutes....Check it out...hope you have a PF day...Take care...Chia

Title: Re: So I'm not alone
Post by brain_cramps on Oct 5^th, 2003, 9:26am

on 10/05/03 at 08:47:49, Ozuser wrote:

...I can replicate all of my headache on anyone to show them what it's like by manipulating different muscles. Try it, find a spot on your trapezius near the base of the neck and about 1-2 inches towards the shoulder. Find a spot that is tender to squeeze. Now pinch the muscle between your thumb and finger as hard as you can on the sore spot. Where does it hurt? Behind the eye on that side...

Hmmmmmmm... Interesting. I have a few people I'd like to try that on. (ER docs, ex-employers, etc...) ;)

Welcome aboard. Sorry it took 21 years to find someone that can relate. (took me about 18 ) Pull up a chair and read, read, read... then read some more. You won't find a more informative site on the web when it comes to dealing with this "hell". Also, the people are GREAT.

grant 8)

Title: Re: So I'm not alone
Post by Miss_Deleny on Oct 5^th, 2003, 9:35am

Welcome Joe! Sorry you had to look us up but sure glad you found us!

I am the supporter for Christopher (Prense). And we DO know how you feel about finding "US"! This site has been a blessing to us both! There is so much information here and plenty of people to support not only Christopher but myself as well!

Like Grant said ... read, read, read, and read some more from the links to the left! If need be, print out as much info as you can to bring to your doc/nero to help find the right combination of meds for you.

~April~

Title: Re: So I'm not alone
Post by Zonie on Oct 5^th, 2003, 9:47pm

Welcome aboard, but sorry that it has taken so long and so much pain.....something that most of us can relate to. Take the advice of those posts before me and read, read, read and ask questions whenever you need to. I am being referred to "another" neurologist tomorrow and I already have my little red file folder full of information ready to accompany me to his office. I have been treated by no less than 7 neuros and about the time I get one trained, they leave or my group insurance forces me to change (different providers). I think that you and Charlie are good examples of just how much we suffer and how difficult it is to find competent "professional" help. That's just one of the reason that this site is so valuable....it arms us with the ammo that we need to educate our doctors as to just how we are suffering and what they can do to help (should they be willing to accept the assignment). I have had many, many neuros refuse to treat me because they didn't know enough about headaches.

Again, welcome and hopefully we will be able to help in some way because we all know what you're going through.

Here's to better days ahead,
Zonie

Title: Re: So I'm not alone
Post by tsayswhy on Oct 5^th, 2003, 10:11pm

Welcome Joe

Sorry you have to be here but glad you found us so no
you are not alone. We all feel your pain :'( You did not
say what you were taking for the pain have you tried
imitrex or O2 it works well.

Have not tried the muscle thing but I will next time around ;) stick around we need all the support we can
get and give when needed.

Title: Re: So I'm not alone
Post by Charlie on Oct 5^th, 2003, 10:20pm

Welcome aboard. We all went through much the same thing of feeling we were alone. If you keep reading and looking around, you'll find good ideas and some good ways to deal with this horror.

Here are two, I hope helpful, links:

The first is to a description of this disorder that is the best we have at explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others.

http://www.ouch-uk.org/ch/note_colleagues.cfm

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

Stick around and let us know how you're doing.

Charlie

Title: Re: So I'm not alone
Post by Ozuser on Oct 6^th, 2003, 7:45am

Thanx everyone for the welcome to clusterville :)

I've actually never been to a Neuro, or a specialist for that matter about my headaches. I tried finding out what it was at the beginning and was told that I had migraines by a GP at age 16-17. Probably too naive at that age to question it so I believed it. Other than put up with the headaches I had the option of medication. I had then/have now and aunt that suffers from migraine who gets herself knocked out for a couple of days by the locum as soon as one starts. I, again naively, thought those were my options and decided to fight it out.

21 years later I'm still doing that. I never take anything for it. Paracetamol only makes them angry lol and I didn't/don't want to end up doped up. From what I've read on this site though there are numerous effective drugs that can be used to control 'them' and of course O2.

Can anyone please tell me if the drugs change their personality dramatically? Not that there is much normality to be had when they come :'( but still some.

Do the people on this message board still suffer the full cycle out, even though they are medicated? I get the impression from reading the posts that they do? From what I can gather the drugs take a bit of the pain away, or can catch it before it takes hold. I guess I am most scared of being doped up and becoming reliant to the point of addiction. 'Mothers little helper' so to speak.

You guys are the gurus of the CH meds. I have read the Neuro report on CHs and found it fascinating. The explanation of available meds was over my head I'm afraid. I would need a medical dictionary and a week to work it all out lol. If a kind veteran of this board could take the time to post suggestions of effective, current meds to go to a doctor with I would much appreciate your gift of time spent ;D

I'd be interested in proving, disproving a theory I have on CHs. I might post the question on the board as it's own topic.

Thanks again
Joe

Title: Re: So I'm not alone
Post by Carl_D on Oct 6^th, 2003, 9:30am

If you want to try attacking your CH's head on with a prophylaxtic, see a neuro and ask about the combination of Verapamil with Lithium. Next try Imitrex injections or nasal spray to abort an attack once your in it. You can also get o2, which helps some to abort attacks as well. There are also pain management options, but be sure to discuss all treatments with your doctor, as some primary physical characteristics will be a benefactor as to what meds you can take.
Sorry you have CH, but at least now you know what afflicts you. Once you know what you have, you can begin treating it.

Peace,
Carl D

Title: Re: So I'm not alone
Post by Surf on Oct 7^th, 2003, 10:25pm

:) Hay Joe. You know as everyone has stated or knows. I have been right were you are and was also enlighted by the site. As when I found it , it could not have came at a better time for me. Joe you know now that your not alone and we hope this can take some of the burden off your shoulders. That is interesting about the muscle thing you got goin on. Glad it helps you. Their is so much work to be done in educating not only ourself in the subject of (Hortons Syndrome)....(I sure hope i got that right or I will catch flack this time...Again...)but also each other and the Doctors as well. Not that I am a teacher or implying anything. If we could all tell just one other person who can use this info and save just 1 person from having just 1 attack that would make the world a better place, who knows you may just find youself helping that 1 person and you know what, you allready did...Surf...aka...Surfshi...Keith H...ya I know problems again.... :)