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(Message started by: Darkmatter on Feb 18^th, 2005, 1:02pm)

Title: Hello
Post by Darkmatter on Feb 18^th, 2005, 1:02pm

Hello,

As I sit here in pain I'm also happy to have found this site, but not entirely sure it applies to me. I'm 35 and I've been suffering from headaches probably since I was a teenager, but over the last few years they've been getting worse.

Here are some of my symptoms.

Headaches mostly start when I wake up in the morning, sometimes as early as 5am, but as late as 7:30am depending on how late I went to bed the night before. I wake up and I feel something there, ususally on one side, but not debilitating. Within 5 minutes I realize that it's gonna be bad so I usually go for the Excedrin right away. The pain is generally localized behind an eye, usually on the left side but sometimes on the right. Reegardless, the pain then irradiates from the eye to the entire side of the head all teh way to the neck, stiffening it . My ear is also affected and I feel trememndous pressure behind the eye and temple... I could take a drill to it and pinpoint the exact spots needing relief. My neck is weak and moving around like on a bobblehead, my eye lid is droopy and the pain, although affecting the entire side, likes to throw in some extra doses like lightining strikes in certain spots, every few seconds.

This morning I woke up at 7:15am with the headache and took Excedrin, but it did nothing. Sometimes though Excedrin works wonders and fast, but other times it doesn't do squat. I always go to work regardless, I've never stayed home from a headache. I feel that my heartrate increases overall and my breathing intensifies as well, having to take deep breathes often. I've had a cold the last couple of days so I can't attribute any stuffyness to the problem. I don't pace, I only feel the need to sit there and deal with it. Sometimes I get a little nauseous but it is brief and could be attributed to only having Excedrin and coffee in my stomach, that can't be good LOL.

I'll go two to three weeks without headaches and then BAM, everyday or every other day for a week or two.

It is truly debilitating in the sense that I cannot concentrate sometimes and it destroys your day completely. Usually by early afternoon the headache is gone, as if lunch helped it, but I'm not sure. I have had it happen where they start right around 10am or 11am and through lunch only to dissipate in the late afternoon.

Hopefully one of you can tell me if indeed I've got cluster headaches. I've been procrastinating going to the doctor about it, but I can't wait any longer and I ned to take care of this.

Any feedback is greatly appreciated.

Thank you.

Vince

Title: Re: Hello
Post by nani on Feb 18^th, 2005, 1:08pm

Welcome Vince...sorry you're in pain. Yes...you should go to the dr. and get a definive diagnosis. You need to know what the problem is before you can get the help you need. None of us are drs so we can't tell you what you have. I'm sure others will be along with their opinions, though. While you are here, print info that applies to you and other info that may help you and your dr figure things out. Pain free wishes, nani

Title: Re: Hello
Post by sandie99 on Feb 18^th, 2005, 2:10pm

Hi Vince,
I am so sorry to hear about your pain... :(
It's a good idea to see a neuro to find out for sure whether you have ch or not. But in the meantime, do this quiz:
http://www.clusterheadaches.com/quiz.html
it can give you more info about the HA you've got.

Best wishes,
Sandie

Title: Re: Hello
Post by RichardN on Feb 20^th, 2005, 12:28am

Ditto the above Vince . . . you really need a correct diagnosis.

You mentioned you tend to sit and deal with it and that you don't pace. For most clusterheads, that's not possible past a KIP 4-6 (see KIP scale - six down on the left). It's not a choice, you have to "dance".

Other symtoms you mention do sound like CH . . . or possible other vascular type headache. Very possible someone here has experience with a similar type headache that could help point you and your doctor in the right direction. Most here try not to comment on something they don't have personal experience with.

Do take the quiz . . . and let us know how you do.

PFDANs,

Richard

Title: Re: Hello
Post by Kris_in_SJ on Feb 20^th, 2005, 8:43pm

Ditto to Richard. You really need a proper diagnosis. All of us are different, and we aren't doctors. Take the quiz to the left. Read the medical info also and print it out for the doc you are going to make an appointment with tomorrow!

The fact is that caffiene is often helpful for low-level clusters, which sufferers often call "shadows." Excedrin has caffiene. When combined with a strong coffee, it probably does help if your headaches are vascular.

Also - start a headache diary or journal. Note the time, duration, intensity, what helps or doesn't, etc., and take that to the doc as well.

Until you're properly diagnosed, you can't receive proper treatment.

Many Hugs,

Kris

Title: Re: Hello
Post by cat14 on Feb 21^st, 2005, 6:56am

Vince,
Everyone is different, I don't bang my head or dance. I just sit and rock. So you don't have to pace the floors, like I said everyone is different. 02 works great for most people but not I either, I have to use trex.

So see your Doctor and make sure he understands cluster because alot for Doctors don't.

Then come here and see what we have to help and what works for YOU.

Title: Re: Hello
Post by TonyG1 on Feb 21^st, 2005, 9:40pm

on 02/18/05 at 13:02:53, Darkmatter wrote:

Hopefully one of you can tell me if indeed I've got cluster headaches. I've been procrastinating going to the doctor about it, but I can't wait any longer and I ned to take care of this.

Any feedback is greatly appreciated.

Thank you.

Vince

Vince - First, I'm sorry you're in pain!! I'll echo what many others have said here. You should first go to a doctor and get a definative diagnosis. I, like you, procrasinated about 18 years with the CH condition before finally biting the bullet and going to a doctor. I used the excedrine and Mt. Dew or Coffee thing as well. I was "officially" diagnosed about a month ago and have since been given some Prescription meds to help with the problem -- I only wish I had went to the doctor before I did [smiley=confused.gif]as I have seen a marked improvement !!

Take Care and I wish you many PF Days and Nights!

Tony

Title: Re: Hello
Post by Darkmatter on Mar 25^th, 2005, 10:55pm

on 02/20/05 at 00:28:17, RichardN wrote:

I took the quiz and 1-8 were all No, 9-16 I got 3 No (9, 15, 16). The whole KIP scale is too vague but I don't think I'm getting past 4. The only thing I do repeatedly is rub on the area of my head that hurts, pressing on it constantly, definitely can't be totally still, but never "pace." It always feels like the pain "moves" from one area to another, yet is constant in one specific place, usually behind/above an eye. Who knows, could just be a perpetual sinus infection, for which I'd be greatful. Yes, I know I need to see a doctor and a full physical is past due in my case so I'll definitely be asking.

An aquaintance of mine is very involved in headache research through UCLA's Neurology dept. Once I've got a diagnosis I'll ask him to tell me more about cluster headaches and if they've studied them specifically. Perhaps there's useful info there.

I haven't had an episode since a couple of days since my first post so I'm kieeping my fingers crossed, yet I know they will be back.

Thanks for your insight and advice.

Title: Re: Hello
Post by Darkmatter on Mar 26^th, 2005, 3:08pm

Spoke too soon damnit... :( Feel like a bobblehead! Do some of you experience "holding of breath" when you are in pain? I find myself not breathing right at all and catching myself having to take deep breaths all the time.

Title: Re: Hello
Post by jokrs2 on Mar 27^th, 2005, 4:47pm

Hey Darkmatter BTW does your ID name have anything to do with the prog band I.Q.? As for the remembering to breathe. I have a big problem with it, but along with being a clusterhead I am also a complete basketcase because of a severe brain trauma injury as a child. Wishing you the best. Now take a big deep breath. ;)
Blessings, Joe

Title: Re: Hello
Post by pubgirl on Mar 27^th, 2005, 7:28pm

Darkmatter

Suggest you go to the OUCH website and have a read around about the different headache types in the research section (OUCh website drop down menu, far left) which have strong similarities with CH as your symptoms seem on the face of it to suggest other headache culprits as being as, if not more, likely.
This may give you some more ideas of what to ask your doctor when they progress the diagnosis.

A good start is:

http://www.clusterheadaches.org/library/general/ch_general.htm

Wendy

Title: Re: Hello
Post by ninaperdida on Mar 29^th, 2005, 11:14am

HI, just wanted to let you know I hold my breath too.Thank God for my oxygen.I have got to the point of passing out. My doc also let me know not to fall asleep with it on because I use the highest dose.I guess you could really stop breathing if your body thinks it has enough oxygen.I have fallen asleep plenty of times accidentally and I am still here.although it feels as if my heart has weakend over the years.oxygen really helps me out in soothing me and keeping me somewhat calm.As hard as it is just rememer to breath slowly and try to stay as calm as you can.Hopefully you are not diagnosed with CH.I will pray for you. ;) P.S Welcome to the family anyway.I thank God every day that I found this place. ;;D ;;D ;;D

Title: Re: Hello
Post by Darkmatter on Jun 26^th, 2005, 1:19pm

on 03/27/05 at 16:47:27, jokrs2 wrote:

Hey jokr,

No, not related to that band, but coincidentally I am in a prog metal band called Prototype. Check us out at www.prototypeonline.com

Haven't posted here in a while and since my last post, I've been to the doctor for a full checkup and they prescribed Nasonex and Midrin for the headaches. I really can't tell if the the Mirdrin works or if the pain just goes away on its own... I'll have to pay closer attention to the time spans.

Title: Re: Hello
Post by yikes-another-one on Jun 26^th, 2005, 5:05pm

:)
Just keep that journal, and it will help ya.

best of luck!

TJ

Title: Re: Hello
Post by Kiwiinoz58 on Jun 26^th, 2005, 6:39pm

When I first went to the doc I was given doses of antibiotics cos it was assumed I had sinus infections. Now of course I know that it is part of CH for me. Each time I get a CH I'd swear my sinuses are on fire and I appear to have a very bad cold. This is just to show you that differebt parts of the face can be affected.
Cheers,
Jacqs(Kiwi)