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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Howdy!
        
(Message started by: J.S.Mallory on Jul 5^th, 2005, 10:42am)

Title: Howdy!
Post by J.S.Mallory on Jul 5^th, 2005, 10:42am

Hi, my name is Jason and I suffer from episodic cluster headaches.

I had my first bout when I was 23 (five years ago), when it was misdiagnosed as migraines (which lasted three bloody months...)

When I had my most recent bout earlier this year, it was finally diagnosed for what they really are and I am once again in remission.

I just wanted to come in and make my presence known, since I've lurked here in the past, when I was learning about my affliction, but I figured I should just sign up and join my fellow clusterheads in one big happy support group. :)

So, hi there!

J.

Title: Re: Howdy!
Post by Margi on Jul 5^th, 2005, 11:00am

Hi Jason, welcome.

So, how do you treat your cluster? Do you use abortive meds? Preventatives? Oxygen? Tell us more. Nice to see you get long remissions! Most folks aren't as lucky as you!

We also have a Canadian site with a message board just like this one - quite a few sufferers in your area. We're having a get together this summer in Canmore, Alberta the weekend after the August long weekend.

Come and check us out - we're at http://www.clusterheadaches.ca - message board link is at the bottom right of our home page.

Title: Re: Howdy!
Post by marlinsfan on Jul 5^th, 2005, 12:26pm

Welcome and congrats on your PF time. Like you, I was also misdiagnosed with migraines for about 9 or 10 years!

Margi asks some good questions, tell us how you deal with the beast.

Jose

Title: Re: Howdy!
Post by cazman on Jul 5^th, 2005, 1:00pm

welcome jason to the madhouse sorry your here but glad to hear your pain free , im jealouse now ! im in cycle here its been almost two months now and no end in site yet, stick around share you treatments with others or just help in anyway you can pf or not , its important to some here that being pf can be achieved for some of us and we always like to here how ya got there you never know it may set someelse free from the beast and when its your turn again not that i hope it ever comes back but if it does the favor will be returned ten fold by your fellow clusterheads cause thats how it works here .

hope you stay pf forever
ERIC T

Title: Re: Howdy!
Post by J.S.Mallory on Jul 5^th, 2005, 1:50pm

After reading some of the accounts here, I do consider myself lucky (amongst CH sufferers), since I only have bouts once every few years. Those bouts still feel like forever when they come... :(

As for my treatment, I was given Prednisone, Calcium Blockers and Imitrex injectors for emergencies. I hate having to choke down all those pills, but it made the pain slightly more bearable until they did what they were supposed to do.

I've also adjusted my diet to cut out refined sugars and trans fats, which has gone a long way toward eliminating duration of the headaches and frequency. About the same time as I was suffering with my first bout of CH, I was also pegged has having a very high triglyceride count (liquid fat in the blood). Bad for a man twice my age, never mind a 23 year old...

By cutting out unnecessary crap from my diet, it made a noticable difference. My first attack lasted three months like clockwork...couldn't work or think and being given the wrong meds (migraine meds instead of CH meds), it only dulled the senses.

When I got put on the right meds the second time around and had a corrected diet for a few years, it was more bearable. The attacks only lasted for one month and even from the onset and I had a little more warning they were coming.

Help me shed a few pounds too. :)

So, if these things hit with semi-regular frequency, I should be PF for a while, since my last attack was only a few months ago.

J.

Title: Re: Howdy!
Post by marlinsfan on Jul 5^th, 2005, 2:23pm

Hi Jason,

One thing missing from your arsenal is Oxygen. Check out the link on the left. It works wonders for most of us.

Everyone: check out the link at the bottom of Jason's post. It will take you to another site where he wrote a great story about his demon. The demon sucks, but the story is great!

Excellent write up, Jason! You should write for a living! Describes what we go through very well.

For me the difference is that I get my headaches at night while I sleep, hardly ever at work. Also, ibuprofren does not help me.

And get rid of that gun. I got rid of mine after I held it in my hands much like you describe.

Nice job.
PF wishes,
Jose

Title: Re: Howdy!
Post by Margi on Jul 5^th, 2005, 3:06pm

Very well written, Jason! You're very talented.

I gotta ask though - how long do your headaches last? From your description, it sounds like they are lasting the better part of a day?

Title: Re: Howdy!
Post by J.S.Mallory on Jul 5^th, 2005, 5:01pm

marlinsfan: I'm glad you enjoyed my woven tale. I find that personification of my headaches helped me reflect on it with a slight dose of humour...

I'll definitely look into the oxygen when my next attack comes.

Ibuprofen is the borderline indicator for me. If I pop a few Advil and the headache diminishes, I know it's a false alarm. If the pain continues to escalate, then it's time to crack open the meds.

I'd love to make my living as a writer. It's been an aspiration of mine for a while... still striving. Until then, I'm stuck hammering out code in a non-appreciating company... <sigh>

Margi: If I get a "good one", it can last upwards of eight to ten hours. Especially nasty ones can last a whole day. Those are usually the ones that wake me in the middle of the night and make me pace around the apartment, trying to bite back a scream, so I don't wake the family...

J.

Title: Re: Howdy!
Post by Margi on Jul 5^th, 2005, 5:11pm

on 07/05/05 at 17:01:31, J.S.Mallory wrote:

Margi: If I get a "good one", it can last upwards of eight to ten hours. Especially nasty ones can last a whole day. Those are usually the ones that wake me in the middle of the night and make me pace around the apartment, trying to bite back a scream, so I don't wake the family...

J.

Hmmm, Jason, that sure isn't typical of cluster. Reading about your photo and phono sensitivity makes me wonder if you maybe are suffering from migraine. Migraine sucks, trust me - I'm a migrainer, my hubby is a clusterhead. VERY different headaches. Light and sound aren't big issues for him at all and his attacks rarely last longer than an hour. Me, I become horribly sensitive to light and sound and I'm out for 10 - 24 hours. I can't always sleep with a migraine, sometimes laying down just makes it worse. Migraines wake me from a dead sleep too. As well, different times of the year are worse for me than others, and I will be pain free for months but then will go into a cycle of migraines again. Cyclic behaviour doesn't make it cluster though.
I see you mention that you wait to take your meds. If you're using imitrex, you should take it at first sign of headache. Also, you really should check into oxygen - it helps for both cluster and migraine.
There's a cluster quiz on the left, here, have a look and see what you think. We're not doctors here and certainly not qualified to diagnose but most of us have decades of watching/partipating/recognizing cluster behaviour and see so many folks who are sadly misdiagnosed by a well-meaning doctor. I sure hope you don't have cluster - I wouldn't wish it on anyone.

Title: Re: Howdy!
Post by burnt-toast on Jul 5^th, 2005, 5:39pm

Another former lurker - We're all alike, hang around in the shadows for a while and then spring on em'

Sorry to hear you had to join in - here's to finding some answers.

Tom

Title: Re: Howdy!
Post by J.S.Mallory on Jul 6^th, 2005, 12:45pm

on 07/05/05 at 17:11:49, Margi wrote:

I always take my meds at the same time of the day (or try to)... which during my last attack was mid afternoon after I got off work. <shrug> Worked with my timetable.

I did take the quiz and I had 1 yes from 1-8 and 1 no from 9-16. My brain doc said the same thing, actually... he thought it might have been chronic migraines at first due to the onset and duration, but after going through the list of symptoms and everything he did think they were clusters. Plus, when I was put on Zomig my first time out (being misdiagnosed), the pills dulled the pain, but did nothing to shorten the bout. The Prednisone and calcium blockers did fix the problem.

I'm not sure that I'd say I am light or sound sensitive per se... but the slightest little thing becomes a huge annoyance when I'm in pain (like that incessant freaking hum of fluorescent lighting). As to why my attacks last so long, I never did get an explanation on that, but I guess I get all my daily attacks in one shot...

It really sucks, that much I know for sure.

J.

Title: Re: Howdy!
Post by Margi on Jul 6^th, 2005, 1:02pm

yes, Jason - it really does suck, whatever it is. I still don't think it's cluster thouh - simply because of duration. A 9 or 10 hour cluster and, frankly, you'd be dead. OK, I'm exagerating but....cluster simply doesn't last that long. Migraine does.

You can't diagnose by reaction to meds, either, because triptans (zomig, imitrex, etc), pred, calcium channel blockers are all prescribed for both afflictions.

It's so sadly common for folks to get diagnosed as a clusterhead when a neuro/doc finds otherwise unidentifiable head pain. I'd sure advise you to get another opinion/diagnosis. Not that it makes a whole lot of difference though - your head still hurts and no one can figure out how to stop the pain. Whether this is migraine or cluster, we still don't know how to cure either one. Sounds like you're on the right meds though - but I still urge you to push for oxygen.

Title: Re: Howdy!
Post by E-Double on Jul 6^th, 2005, 1:09pm

If you want to learn about any and all identified HA read through this......the International Headache Society's Frameset:

http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pdf