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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New member from Seattle area
        
(Message started by: John58 on Mar 3^rd, 2005, 2:42am)

Title: New member from Seattle area
Post by John58 on Mar 3^rd, 2005, 2:42am

My name is John and I have been a Cluster Headache sufferer since I was 14. I am now 47 and I live in the Seattle area.

I remember being sent home from Jr. High one day with the worst headache ever. When the pain went away, I felt euphoric. Never had another Cluster type headache again until I was in my 20s.

They always occur on the left side, behind the eye and usually are proceded by an aura in my left eye, what I can best describe as the "sparkly lines." The aura starts as a dot and expands outward in an arc shape of zigzaging "sparkly" lines until it leaves the field of view. It is then that the pain usually sets in.

Each headache lasts one to three hours and it is rare that they are shorter than one hour. They usually happen during sleep, right after going to sleep and/or just before awakening for the day. During the maximum peak of headaches, I can have them during waking hours, also.

Each episodic period lasts around 8 weeks. Needless to say, this is very frustrating and fatiguing.

When each headache ends, I have an incredible feeling of euphoria, something I attribute to a massive release of endorphins during the headache.

I am currently episode free, knock on wood. I have not had an episode for over 4 years now. The usual time between episodes is about 2.5 to 3 years, almost like clockwork. I have had episodes at all times of the year leaving me to believe that they are NOT a seasonal affective disorder.

I do, however, still occasionally get auras in my left eye but there are no headaches associated with these. I do notice that I become hypoglycemic after an aura episode. This leaves me to believe that Cluster Headaches may be triggered by something abnormal about my own body chemistry.

In reading descriptions of other sufferers, it is amazing how much similarity there is in how we experience this condition. Because of this, I really feel there has to be a simple solution and treatment of this condition that the medical field is overlooking.

Feel free to comment.

John M.

Title: Re: New member from Seattle area
Post by jokrs2 on Mar 3^rd, 2005, 3:08am

Hi John Welcome to the site, and glad to hear you're not in a cycle right now. I'm up here in Snohomish County so maybe we can organize or hear when the next get together in this area is. I am a chronic and am always in at least in shadow with pain level 2 -3 out of 10. New to the site myself. Lots of great people here. I've been checking out all the stuff on the left of the screen and spent alot of time in the "jokes" section. Laughed my butt off [smiley=laugh.gif] and it helped quite a bit. Hope you have many pain free day's. Joe

Title: Re: New member from Seattle area
Post by thudpucker on Mar 3^rd, 2005, 8:13pm

on 03/03/05 at 02:42:27, John58 wrote:

They always occur on the left side, behind the eye and usually are proceded by an aura in my left eye, what I can best describe as the "sparkly lines." The aura starts as a dot and expands outward in an arc shape of zigzaging "sparkly" lines until it leaves the field of view. It is then that the pain usually sets in.

That sounds like optical migraine syndrome. I get/suffer from optical migraine syndrome, too (mine is something like looking through a window blurred by rain), but the headache that may follow is minor and dull.

The cluster headaches are another critter entirely.

Title: Re: New member from Seattle area
Post by cey on Mar 8^th, 2005, 4:45am

hey neighbor im from tacoma area! I was just in seattle today to see my NERDALOGIST . She is one of the best around ! But still cant fix me! GOOD LUCK ! ive been a cronic sufferer for 21 years! just taken meds CEY

Title: New member from Seattle area
Post by Bob_Johnson on Mar 8^th, 2005, 8:58am

Curr Pain Headache Rep. 2001 Feb;5(1):67-70.

Migrainous features in cluster headache.

Peatfield R.

Charing Cross Hospital, Fulham Palace Road, London W6 8RF, UK. rpeatfield@ic.ac.uk

Migraine and cluster headache have been considered entirely separate clinical syndromes, both in routine clinical practice and in the 1988 International Headache Society classification. Neurologists seeing large numbers of patients soon realize, however, that there is a considerable overlap between the two conditions. Some patients have attacks with the cardinal features of cluster headache, but also have a few symptoms (especially a visual aura) usually attributed to migraine. In addition, it is not uncommon for a patient with a lifetime's history of migraine to experience a typical bout of cluster headache, although the reverse is less common. This article reviews the published series of such patients.

Publication Types:
Review

PMID: 11252140 [PubMed - indexed for MEDLINE]
---------
Cephalalgia. 2002 Nov;22(9):725-9.

Atypical presentations of cluster headache.

Rozen TD.

Department of Neurology, Cleveland Clinic Foundation, Cleveland, OH 44195, USA. RozenT@ccf.org

Recently, cluster headache has been shown to occur with aura, suggesting that as more cluster patients are seen by headache specialists new forms of this well-defined primary headache syndrome will be identified. This study presents three atypical presentations of cluster headache: persistent or unremitting cluster, periodic cluster, and reflex or event-related cluster. Case reports are presented with an explanation as to why these headaches should be considered cluster headache.

Publication Types:
Case Reports

PMID: 12421158 [PubMed - indexed for MEDLINE]
=====
Cluster with aura is rare but not hard to find a few references to it.

Your last question is the breaker! (Sorry) Virtually everything you will read here indicates that there is no single, simple solution to Cluster. We struggle with multiple and changing treatments: The Silver Bullet has yet to be found.

Start with this for an overview of current therapy:

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: New member from Seattle area
Post by Gator on Mar 9^th, 2005, 1:27am

Welcome to the website. Glad you were able to find us when not in cycle. Maybe you can find some new info that (hopefully you'll never need again) will help you when that next cycle hits.

I lived in Tacoma from July 1984 to October 1987 while in the Air Force stationed at Fort Lewis. Made many trips to and through Seattle. Beautiful country up there if you can stand the rain. Like the slogan says: Washingtonians don't tan - they rust!

Funny. Now that I think of it, some of the places I've lived may have been a hint at what was to come. Lived in Pierce County in Washington. Live in ~~Pain~~ Payne County now. Okay, not that funny.

Anyways, welcome again to our little corner of the web.