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        New Message Board Archives >> 2002 Posts >> Am I an Imposter? (long)
        
(Message started by: sueellen83 on Oct 27^th, 2002, 1:18am)

Title: Am I an Imposter? (long)
Post by sueellen83 on Oct 27^th, 2002, 1:18am

When I first found ch.com I was so excited. I couldn't believe I had actually found others who knew what I was going through with the beast. I was so anxious to talk to you all I just jumped right in and started posting.
I feel I didn't say enough about myself and my CH history in my first post and some of my later posts were misunderstood.

If you will indulge me, I would like to start over and give you a complete look at my credintails to be part of this craziness. LOL

I had my first bout with the beast when I was 7 years old ( didn't know what it was at that age, just knew my head hurt). I would call my mom in tears from school at 10:00 every morning. She would come and get me at school and about 15 minutes after we got home the headache was gone. Mom decided I just needed to eat earlier and had the school let me go to lunch early. After about 2 weeks the headaches vanished.

The beast left me alone for 6 years, then he returned. He stayed for about 4 weeks. I would go in my room and bang my head on the wall trying to get rid of the pain. Then he left again.

At 16 , he returned. This time he didn't just wake me up early in the morning, he also hit me 3 to 4 times a day ( in school, at work, where ever). After about the second week of this and eating 100 Maximum Strenght Excerin in 2 days, I told mom I would pay for it if she took me to the Dr. We went the next day. I was put in the hospital for tests. (this was in the time before HMOs). I had EEG's and a CAT scan (the top of the line at that time), all normal. I was diagnosed with Trigiminal Neuralgia, put on Bellergal S and sent home. The Bellergal stopped the headaches and I went about being a teenager.

At 19 I had a short bout with the beast. Then at 22 the Bellergal stopped working. I was sent to a neurologist to start me on Tergretal (the next step for Trig. neuralgia). The first visit to the neuro. I had a CH in his office. That's when I got the diagnosis. He put me on Inderal, Bellergal and gave me an ergotimine inhaler. The Inderal helped a little but, the inhaler saved my life.

I have been struggling since they quit making the inhaler to find something to control the beast. I have had CH's every 2-3 years. The cycle lasts 12 to 16 weeks. This time I had a different neuro. who is willing to try different meds. and O2 (had read about O2 but, old Dr. wouldn't even discuss it), Verapamil 480mg a day is controlling the beast.

A while back I answered a post about foods that trigger CH's and said that MSG and raw onions, trigger my CH"s. What I should've said was they seem to make the HA's more intense. I also said in reply to another post that I had an CH that lasted 6 hours. Don't know what to say except it started at 8:30 PM and at 2:30 Am it was still there.

Thanks, for your patients and understanding. I hope you will forgive me for such a long post.

Title: Re: Am I an Imposter? (long)
Post by Mark C on Oct 27^th, 2002, 2:17am

Thanks for your post Sueellen,
I too was am still am a little intimidated about this MB but I aint gonna let anyone run me off. Dont you either. You sure sound qualified to me, but I have only had CH since I was 14. I will be 41 in November. According to most of what I have read we were a little young to have CH, but tell that to our heads. There is a lot of controversy on this MB over certain terms but I believe the bottom line is I have never really been able to make anyone, not even my DR's understand just how bad this shit hurts.
You know.
And it ain't that long :)

Thanks,
Mark

Title: Re: Am I an Imposter? (long)
Post by Charlie on Oct 27^th, 2002, 4:40am

Welcome back and maybe we all can do better.

No need for you to tell me about the pain. I do know what it's like. All of us do. By the way, Inderal worked very well for my episodic attacks. I didn't take the stuff all the time but when I began my cycle. I paid a price for that as it took nearly a week before it began knock down the frequency. The thing is, with all the anti-convulsants I was using; I didn't need to add another drug. With the circulatory technique, I had a fighting chance most of the time anyway.

A six-hour attack makes be wonder. Was this full-blown for all that time? I'd have played in traffic with that level of agony. I assume it fluctuated somewhat and may have been more than one. Surely there must have been some kind of break. If not, and you are unique, you're tougher than I. ???

I realize this place gets pretty bouncy but most of it isn't as serious as it sounds. Some of it is to elicit information. The watchdogs can be abrupt but often it boils down to communication problems. I'll listen for awhile and long posts aren't unique and the detailed information is welcome. 8)

You'll get answers soon enough :)

Charlie

Title: Re: Am I an Imposter? (long)
Post by Ree on Oct 27^th, 2002, 10:43am

Hey Sue ellen ... Never had a doubt in my mind that you had CH... just feel sorry and sympathetic that you had to deal with this in your childhood... Also everyone here that has CH has THEIR pattern and THEIR pain and if everyone else doesnt cut to the terms of THEIR cycle they DON'T have CH... for all I know I DO HAVE CH... I get sick of the BS... Some sufferers also suffer from Migraine along with CH so dont discount yourself for one 6 hour attack... some shadow for days... I consider that shadow a Migraine although Im no one to listen to just a MEEgrainer... God Bless you Su hope you find the silver bullet that will make your life as normal as possible... love to you and all those that support you Ree (ps some people do have triggers some don't)

Title: Re: Am I an Imposter? (long)
Post by Margi on Oct 27^th, 2002, 11:57am

Hi Sueellen

Yes, you sure show signs of clusters. I echo Charlie's thoughts here. It sounds like your six hour attack may have been two or three attacks, back to back. I've seen that happen for Mike - rare, but it's happened. I also think I remember Elaine having a night like that too, 3 attacks one right after the other. :(

For Mike, the pain spiked, and then receded (one night, at the peak of a cycle), and he wasn't getting more than 20 minutes between attacks. I'm sure he hit Kip 9 about 3 times in the space of a night, but he would always go back down to a 1 or 2 in between thos peaks. It did seem to go on for hours and hours, but we know now that particular night was just a series of attacks, repeatedly nailing him.

I'm sure, to some folks that time span can seem like one long attack, when it really isn't. I dunno.

Title: Re: Am I an Imposter? (long)
Post by StanTheMan on Oct 27^th, 2002, 1:57pm

For what it's worth (my opinion isn't worth anymore than the next guy's) you sound like a legit clusterhead to me!!

Hang in there and God bless!

Stan

Title: Re: Am I an Imposter? (long)
Post by sueellen83 on Oct 27^th, 2002, 4:45pm

Thanks Everybody, I feel better now, (if that's possible with this beast on my back). I just hated to think I was going to have to start at square 1, ya know, trying to find out what was going on.

Charlie and Margi, you maybe right and that 6 hours was aseries of attacks. Can't seem to figuire out when 1 stopped and another started though. It truely was a night of hell. Begged my husband to shot me. He must love me 'cause I'm still here!!! LOL

Thanks again for letting me vent. Love you guys!!!

Title: Re: Am I an Imposter? (long)
Post by pjbgravely on Oct 27^th, 2002, 5:06pm

Sue Ellen, It doesn't sound like you have classic clusters but you probably have something called Cluster/migraine syndrome. It combines the pain of clusters with the leanth and triggers of migraines. I to have 6 hour ch's and I could never survive a 6 hour 10 without a er trip for imitrex. Most docs have never heard of this becouse it is rarer than clusters. The one intresting thing about this is that beta blockers can work as a preventative. I have sunlight as a trigger and my eyes hurt outside without sunglasses for my whole cycle. I have some information but I am not sure where I got it. DRK Angel has the links but he is not here any more. DRK if you are lurking out there can you send Sue Ellan the links. I Don't think she will expose you. Sue let me know what happens, I can look for you when I get time. PJB

Title: Re: Am I an Imposter? (long)
Post by captdshea on Oct 27^th, 2002, 6:21pm

;D
Hi sue ellen,
My bouts began at a young age ( 15 )..
I remember my mom thinking I had took a shower with
my clothes on, as I was in the bathroom for a 30min.
battle with the beast, Mom could not understand
what else I be doing in the bathroom for 30 mins. and leaveing there soaken wet. I hid my CH for years and
never to this day did meds.
You seem to be haveing a compo.. of problems going on.
One thing you should know is the Beast is a she.... ;D :-/

Title: Re: Am I an Imposter? (long)
Post by 2E2D on Oct 27^th, 2002, 6:49pm

Info on Cluster-Migraine Syndrome and other HAs can be found on the OUCH site at the following address:

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

Title: Re: Am I an Imposter? (long)
Post by Mark C on Oct 27^th, 2002, 7:55pm

Margi, Charlie PB and crew, thanks for the dope again on this. I think in the my longest HA, some 6 hours or more they were back to back now that I think about it. I have only had one of those in the last two or three years though. I swear I have had a couple of Monster Blasts that were K-10's that lasted more than an hour.
Hide the gun.
In my 20's it was much worse, more frequent and severe, with less meds that were less effective.
I have had severe pain, shadow, ghosting or whatever you want to call it between the massive strokes of pain to the point it it got real bad. Maybe go for several days, or weeks, or maybe even a month, or more of heavy ghosting etc with usually 2 or 3 really bad hits in 24 hours. Damn hard now matter how you slice it.
Felt pretty good today guys, thanks.
Bye,
Mark

Title: Re: Am I an Imposter? (long)
Post by sueellen83 on Oct 28^th, 2002, 1:05pm

Hey Marc, glad to hear you are feeling better. :)

PJB and 2E2D thanks for the info. on cluster/migraine syndrome.