Clusterheadaches.com Message Board


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

        New Message Board Archives >> 2003 Posts >> Another New Guy
        
(Message started by: BruceD on Jan 9^th, 2003, 12:28pm)

Title: Another New Guy
Post by BruceD on Jan 9^th, 2003, 12:28pm

Greetings all,

Well I finally had to post here. I just got through battling the rogue band of nail gun toting demons here at work. I really hate those guys and wish they’d stay out of my head. They keep coming back 1-3 times a day/night and hang around until their compressed air runs out (about 2 hours worth) This episode has been going on for about 3 1/2 months. I actually had a brief 2 week hiatus in which they actually switched sides from right to left.
Anyway, here’s my background:

I’m a 35 year old male who has been suffering from CH’s (undiagnosed) since I was about 23 (clinically diagnosed with CH’s about 5 years ago). Actually, like many of you, the early years had me assuming that nasty sinus infections & allergies were causing the problems. Back then, mine were seasonal and started in late Oct. or early Nov. and occurred sporadically until ending usually sometime in March or April. I suffered with these sporadic attacks and my wonderful wife (actually an ICU nurse) would try to help with meds, nasal sprays, almost anything to alleviate the nighttime terrors.

This unknowing approach actually lead me to a couple of personal treatments that worked for a while. The first one (water, water & more water) is already known to you guys, but the second one I haven’t seen anywhere. Normally I did not drink any caffeine but found if, instead of water, I slammed a couple of Mt. Dews whenever I felt like a headache was coming on it would help things out. Since caffeine is a vasoconstrictor, I think that it helps alleviate some of the CH driving forces.

This continued until about 7 years ago when suddenly they went away and didn’t bother me for about a year and a half. During that time I cut out the caffeine completely and thought that life was grand.

Then about 5 years ago things started up again particularly bad and I started having a noticeable drooping eyelid & uneven pupils. The headaches were getting worse so I went to my general physician and she was very astute and diagnosed me with CH. Yeah!

Anyway, since then I’ve tried ergotamine sublingual with limited (short term) success. I have been very hesitant to resort to Imitrex because I have a very good friend who suffers from migraines and she had some nasty cardiac side effects with it. However, in my current circumstances, I am actually reconsidering that option. My little caffeine trick seems to be wearing off and it only seems to slightly ameliorate the effects of the headaches.

These things are really wearing me down. My family (wife & 3 kids) are the absolute greatest a guy could ever want and help tremendously, but there’s little that they can do when dad quietly gets up in the middle of the night to go downstairs and drink Mt. Dew and bang his head. Then the caffeine keeps me awake and I get even less sleep and the cycle is perpetuated. Some days I get off easy and they don’t pound me too badly. Others, like today, are almost unbearable.

Anyway, thanks for listening and I’ll try not to be a stranger.

Title: Re: Another New Guy
Post by echo on Jan 9^th, 2003, 12:35pm

Welcome to our little, but growing, family of sufferers and supporters. Sorry to read of yet another person who needed to seach for a site such as this. Stick around, chime in, learn and teach.

Welcome again Bruce

Title: Re: Another New Guy
Post by cootie on Jan 9^th, 2003, 1:03pm

Hello nuther new guy Bruce........sorry ta hear of yer pain.....jus wanted ta say hi.......Pam

Title: Re: Another New Guy
Post by BruceD on Jan 9^th, 2003, 1:19pm

echo & cootie,

Thanks for the warm welcome. I visited this site several years ago, but didn't see the message board at that time. Oh well, I need it now and your input will be greatly appreciated. I sure wish nobody had a need for a site like this, but since we do I am thankful that it's here. :)

I think I need to get back to the doc & see what I can do. I've never tried O2 but am more open to that than other intensive meds. Has O2 been an arrestor for you guys, or does it simply lessen/postpone the pain? Although I'm not a doc, I'd assume that the elevated O2 levels in the bloodstream would result in clamping down & vasoconstriction, right? At this point, I'm up for almost anything. Just when I think that I'm catching up on sleep and feeling pretty good I get blasted with a mid-night CH.

Title: Re: Another New Guy
Post by catlind on Jan 9^th, 2003, 1:25pm

Welcome aboard Bruce! Sorry you had need to find us, but we are a great family to have around for support.

O2 is a CH'ers best friend. Jonny and Ueli are the residen guru's. You want O2 at 8-12lpm minimum with a NON rebreather mask.

It's been a life saver for me, and will abort 60% of my attacks. Most others on here have higher success rates, but I currently have no other abortive to use so the O2 is it for me.

Read read and read some more, you will find more on this site than most doctors know.

Grab an oar and start rowin :)

Cat

Title: Re: Another New Guy
Post by cootie on Jan 9^th, 2003, 1:33pm

Bruce....I've heard nothin but GOOD bout 02.....I'm a supporter tho so wanted ta clear that up with ya....Brad's had CH I keep sayin 15 yrs but is has been closer to 20 I'd say by now. We didn't do the 02 the past episode but he didn't exactly know how to use it when he had it before......now I found this place I know I can get the info I need for him to use it properly to work as it does others next time. Yer in good hands here dude........grab a branch and join the family tree.....Pam :)

Title: Re: Another New Guy
Post by Mr.Happy on Jan 9^th, 2003, 1:53pm

Howdy, Bruce! Welcome aboard. Since you've been at this for over 10 years, let's dispense with the pleasantries....

Quote:

I think I need to get back to the doc

Stop thinking. Call the Doc _Ten Minutes Ago_, drive to his office, and get that ruddy little piece of paper with his Sig on it saying "Oxygen for Cluster Headaches". Drive immediately to a Med Supply Shop, and get set up for under $75. Mess with insurance/long term usage later. Get the O2 NOW, and see if you're a lucky responder. Don't forget the non-rebreather mask. It's another one of those little details that's "kinda" important! :)

Sounds like you're well beyond coffee therapy and the occasional egot* to abort. Unless you already have a bad ticker, the Imitrex/Triptans are the way to go for a fast abortion. Just don't take the whole box at once.......

You didn't mention anything about Preventatives, like Verapamil, et.al. Time to look into them as well. You're going to be at this for a while. Might as well do your best to stop hemmoraging during the ride!

Quote:

At this point, I'm up for almost anything.

How about a nice game of chess?

Check,
RJ

Title: Re: Another New Guy
Post by woobie on Jan 9^th, 2003, 2:01pm

Hello - and Welcome!!
I just wanted to say that.. and DITTO what Pam and Catlind said! Get some O2.. was a Godsend in this house!! (i am supporter also.. )

I'm sure you'll find what you need here!! These people are AWESOME!!

Tina :)

Title: Re: Another New Guy
Post by Anja24BR on Jan 9^th, 2003, 2:10pm

Hello There!
Welcome to the board...
My name is Maria Rita, I'm from Brasil and I found out I have CH last friday.
I'm still a learner but I can tell you that O2 has made wonders for me, thanks to all the ppl from the chatroom that told me to use (thank you guys :-*).
It stops the pain as fast as a blink and i think you should try it.
I'm using 3 meds now, Verapamil, Meticorten and Indocid and they seem to work... Verapamil and Meticorten better than Indocid...
But i was told too that some meds work better than others, and it depends on the person.
Anyway... I hope you are OK now... PF and I invite you to chat with us at http://www.headachesupportgroups.com/echat43/public/index.html .
Hugs from Brasil
Maria Rita (Anja24BR)

Title: Re: Another New Guy
Post by ThisHurts on Jan 9^th, 2003, 2:42pm

I guess I'm not the only new guy, however I feel somewhat special. Here's my story:

First off, i'm 30 years old, and I started getting CH on Dec 14 of 2002. I was told at first that it was a sinus infection....ect. I didn't buy that, so I started bugging every doctor in my reach. My biggest problem with the docs was that I have FyberMyalgia as well. Tell that to a doc, and your labled drug seeking and told to leave. Finally, yesterday, Jan 8th 2003 during one of my episodes of intense death like pain in my right eye I drove to and opthomoligist and they saw me right away and noticed my right eye was doing weird sh&*! He then call a neuro doc who said Cluster Headaches! I guess I am one of the lucky one's who got to a doc who knew, and belived me. I know that had my eye been normal it would have never got that far, and I would be pulling my hair out and yelling at closed minded doctors. Keep the faith folks as our numbers grow more will be forced to address the problem!

Title: Re: Another New Guy
Post by Huff on Jan 9^th, 2003, 4:39pm

Bruce-

I won't say sorry you had to find this web site becuase if you have CH's it's like finding the pot of gold at the end of the rainbow, or atleast like finding a weponery before going into battle.

Mr Happy is a hundred % right. Get to the Docter/Nero w/o any excuses. Get the perscription for O2. If you use it at the very first signs of an attack it can be extremely helpful and no real side effects to speak of.

Don't forget the Imitrex! O2 doesn't work if I'm woken up by a CH, it's usually too late by then. This is where the Imitrex shots come in handy. More than likely your insurance Company won't cover very many per month so get your doctor to give you some free samples. If he/she resists then call their office every time you have a CH. Some people (doctors too) need to be reminded how horrible this illness can be. They'll eventually come around, and if you're any thing like me- you're not very plesent during a CH which should get their attention.

Verapamil & Depacote is what I take for my chronic CH's but usually twice a year (April & Nov-Jan) they make their way past the preventive meds and I'm back on abortives. Hint: Even when not having CH's, make sure you stock up on your Imitrex. You never know when that day will come that you need them again.

It sounds like you have a wonderful family that supports and understands you and CH's which is a life saver. Get you wife to jump on board as a supporter, information should never be put off to the side.

Be persistant in your research, knowledge and conversation of your illness it WILL make it easier.

wishing you PFDAN

Huff

Title: Re: Another New Guy
Post by domm on Jan 9^th, 2003, 4:48pm

Wow - three new post(ers) in one thread ! Bruce, Thishurts and Huff, welcome to clusterville. Pull up a chair and stick around. I hope all of you have joined OUCH. If not, hit the button on the left and join up. Its even free and will give you a voice as we try to find a cure for this damn horrid condition, rather than just treating it.
Hang tough guys
domm

Title: Re: Another New Guy
Post by Mark C on Jan 9^th, 2003, 5:29pm

Welcome to Bruce and Maria and This Hurts,
Sorry you need us but glad you are here. Bruce, good luck with the head. I have found Imitrex to be the nectar of the Gods, the first medicine to actually help my CH after suffering for over 15 years either mis-diagnosed or mis-medicated. If you have a good heart there should be not too much trouble in using either the injection or nasal spray. Also not enough good things can be said about properly used O2.
Welcome again to you new folks ;D
Mark
http://www.gifs.cc/aniwelcome4a.gif

Title: Re: Another New Guy
Post by suzy617 on Jan 9^th, 2003, 6:02pm

Welcome Bruce, Maria, This hurts.
Wow the beast must be out in full force lately. Stick around, I've learned more here in one day then I did in 21 years listening to the good ole Docs. Hope you all find pain free days soon....
suzy

Title: Re: Another New Guy
Post by cootie on Jan 9^th, 2003, 10:36pm

Thishurts and Huff.....hello.......wow Maria is from Brasil.....that jus sounds so cool.......I'm with Suzy on the deal bout learnin more on here in one day then thru many years previous. Pam :)

Title: Re: Another New Guy
Post by Roxy on Jan 9^th, 2003, 10:43pm

Welcome Bruce, Thishurts, and Huff,

Sorry you had to find this place, but I'm glad you did. Get your 02 as soon as possible. I've only had mine since New Years Eve, and believe me, it has really made this a better year. There is plenty of information on the site which will help you, so read up. Good luck with your doctors and meds.

PFDAN

Roxy

Title: Re: Another New Guy
Post by JDH on Jan 9^th, 2003, 11:12pm

Like Roxy, I had the o2 delivered new years eve and it has been a difference maker.
"the rogue band of nail gun toting demons"...I love that description.
Someday those guys are gonna get theirs and I wanna be there to see it.

Title: Re: Another New Guy
Post by Charlie on Jan 9^th, 2003, 11:28pm

Welcome Bruce, Thishurts, and Huff.

Glad you found us and if you stick around, you'll likely find things here that will help you manage this horror. It's a busy place and there is a ton of good info here.

Here is a technique that helped me and others:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: Another New Guy
Post by firebrix on Jan 10^th, 2003, 1:05am

Welcome to you all!
Pleased that you found this site but sad that you need it. You have already received some very good input, so I'll just say Hi and "pleased to meet you".
happy to help if I can - just IM or E mail
PFDAN to you all, BruceD, Anja24BR and This Hurts!
firebrix

Title: Re: Another New Guy
Post by StanTheMan on Jan 10^th, 2003, 8:51am

Big warm welcome to Bruce, ThisHurts, and other newbies...

READ! READ! Read this site! Lots 'n lots to learn!

Glad you found us, but sorry you're struggling with the beast. Hopefully the information you glean from here and talking to others will help you find some relief.

Blessings and best wishes for PFDAN!

StanTheMan :D

Title: Re: Another New Guy
Post by BruceD on Jan 10^th, 2003, 12:56pm

Thanks to all for the info & warm welcome. I just had to laugh at Mr. Happy's reply - you pegged me: I'm just a hard headed guy and I should get off my rear and get things done! Thanks.

I've got the doc apt. later today & I'll get things squared away with O2 & meds. Thankfully I'm now going on 24 hrs without any full-blown headaches. Went to bed last night with a nagging shadow & woke the same way this morning. I know it's coming sometime and I'm just tired of walking around on pins & needles.

Also, I showed my wife this board last night and she'll probably be adding to the mix sometime. I'm lucky, as an ICU nurse she's my in-house medical consultant.