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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> hi im new here
        
(Message started by: jordant071 on Jun 16^th, 2004, 1:28am)

Title: hi im new here
Post by jordant071 on Jun 16^th, 2004, 1:28am

hi all,
Wow, a site that truly speaks to my needs.
my name is jordan and i have been suffering cluster-like headaches for years. The first one that i can certainly call a cluster happened when i was 12, moving from hot sun to very cold AC environment, but it was only the one, and i did not think much of it at the time. When i was 26 ( in '97) i started having them regularly, generally in sets lasting 3 months long, with a 6 month or more reprieve between, and never more than 2 individual headaches in a week (until recently, more later).
i have never had actual physical pain associated with these clusters (until recently), they are closer in spirit to partial siezures; with feelings of deja-vu, strange visions, vertigo, audio hallucinations, and sometimes tunnel vision. quite discombobulating to say the least. each individual headache comes on like a comet out of the blue, no warning, and only last 8 seconds max! but those 8 seconds can be very noisy, and i can find myself groping for the nearest wall to keep from falling down , but i have never had to call off from work, or been so incapacitated that i could not do my job (until recently).
Because of the manner in which these CH's come on, and because i had never lost work because of them, i never had any treatment for them (until recently, read on...).
This past week, i have had my most severe cluster ever, it started when i was helping my wife put together some baby furniture (this child will be our first) . then we went to dinner at a friends house where we had brats (nitrates), a beer and a shot, and then i went to work ( after resting for a few hours, i was being good!) Over the course of the night my clusters steadily got more insistent, more pervasive, until i was having 2-8 per hour. the whole day following i had a few more. But then, again while at work, my clusters came on in such a rush that i could not pay attention to my job (i work alone, overnights, around a rather large mixer and hot ovens, rather dangerous). I only put in about 2 hours worth of work before (carefully) riding home. Monday morning i went into acute care at my hmo clinic where the doc prescribed ketoprophen, it takes the edge off, but i can still feel my brain spasming. i have been off coffee for two days, and seriously limiting alcohol (i dont need to destroy my liver twice as fast, do i), but i can still feel 'em happening ((see my blog at livejournal.com Username "col_crapola" for more detail)) just not as strong.
a very strange week indeed, i must make another appointment with neuro to see if we can catch one in the act.
please comment freely, im just glad to know that im not the only one in the world who feels this way.
Happy Thoughts
Jordan

Title: Re: hi im new here
Post by BobG on Jun 16^th, 2004, 1:54am

Hello Jordan,
Sorry to hear you're hurting.
I'm not a doctor and this is only my opinion.
From your description it sounds more like you suffer from CPH (Chronic Paroxysmal Hemicrania). On the left side of your screen is a button 'cluster quiz'. Take the quiz and see what answers you get.

CPH is usually relieved with Indomethacin. Please talk to your doctor about it.

And click below for a comparison list of headache types.
http://www.clusterheadaches.org/comparison_table.htm

Let us know what your cluster quiz results are.

Title: Re: hi im new here
Post by pubgirl on Jun 16^th, 2004, 6:12am

Hello Jordan

I'm with Bob here. Cluster headache attacks are not that short or frequent.

There are several shorter-lived headache types (same pain levels but briefer and more frequent) and ALL are responsive to the correct dosages of Indomethacin. Most good neuros will try a diagnostic trial of this drug in any case as it can be 100% effective.

In addition to Bob's recommendation you may want to read this link which is about the shorter lived headache types which includes CPH, SUNCT, Idiopathic stabbing etc or have a dig around in the OUCh Library via the OUCH Link on your left as there is loads of information there:

http://www.upstate.edu/neurology/haas/hpstab.htm

Wendy

Title: Re: hi im new here
Post by Superpain on Jun 16^th, 2004, 3:02pm

I'm not sure it even sounds like cph, but it definitely doesn't sound like clusters....

One question... Do you experience pain that you never imagined could exist?
If no, it's not clusters.

What you describe sounds more like this. My wife has it and it is pretty bothersome.
http://www.emedicine.com/ent/topic727.htm

Have you taken the cluster quiz on the left?

Title: Re: hi im new here
Post by eyes_afire on Jun 16^th, 2004, 6:06pm

Hi Jordan,

Please check out some of my favorite head pain links below. You may discover that your pain can be very effectively treated with indomethacin. But, you should still see a neurologist.

Here are my favorite links describing some of the trigeminal autonomic cephalalgias and other unrelated headache types:

cluster headache:
http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature

chronic paroxysmal hemicrania
http://www.upstate.edu/neurology/haas/hpcldx.htm#cph

SUNCT syndrome
http://www.upstate.edu/neurology/haas/hpstab.htm#sunct

idiopathic stabbing headache
http://www.upstate.edu/neurology/haas/hpstab.htm

hemicrania continua
http://www.upstate.edu/neurology/haas/hphemi.htm

trigeminal neuralgia
http://www.ninds.nih.gov/health_and_medical/disorders/trigemin_doc.htm

hypnic headache
http://www.mhni.com/faqs_unique.htm#hypnic

exploding noise
http://www.mhni.com/faqs_unique.htm#exploding_noises

DISCLAIMER: This is no substitute for a diagnosis. See the neurologist for a diagnosis. This is only to point people in the right direction

--- Steve

Title: Re: hi im new here
Post by jordant071 on Jun 16^th, 2004, 6:39pm

hi all, and thanks for the info and links.
just wanted to say, well, i may not have been clear enough about my specific condition. i dont really have any pain associated with these spasms, just really wonky hallucinations, vertigo, etc. no nausea or vomiting, no icepicks. so i still dont have any easy terminology for what i am experiencing! i came up with "siezure-like headaches" but that still only goes halfway in describing these "things".
doing my homework
Happy Thoughts
Jordan

Title: Re: hi im new here
Post by Superpain on Jun 16^th, 2004, 6:48pm

Sounds like migrain associated vertigo....
Read my link above and see if that describes it.

Title: Re: hi im new here
Post by jordant071 on Jun 17^th, 2004, 8:18am

man that hits it right on the nose. Thanks Super. i will be having a long session eeg very soon and i will bring it up to the techie to see whats what. i will also be seeing the neuro doc very soon for some follow up.
a big thank you to all who responded, i am now armed with terminology i can live with and use to my advantage. may all of you find peaceful places and pleasant people.
Happy Thoughts
Jordan

Title: Re: hi im new here
Post by pubgirl on Jun 17^th, 2004, 3:05pm

Good luck with getting treatment Jordan, and thanks for the well wishes

Wendy

Title: Re: hi im new here
Post by Superpain on Jun 17^th, 2004, 5:15pm

on 06/17/04 at 08:18:30, jordant071 wrote:

If that's it, unfortunately there's not really anything you can do about it.... Unless it's happening all the time, which it sounds like it may be... If it's happening regularly and effecting your life, your best option is to undertake the standard ch/migrain preventatives like verapamil. If it is bothering you that much, hopefully that will take care of it...
Good luck.