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Topic: So, what's your story? (Read 714 times) |
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samsara
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So, what's your story?
« on: Apr 12th, 2005, 4:36pm » |
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So, I'm new here and I am very curious to hear stories from other cluster heads. I have spent many hours over the last few days on this forum... reading and reading and reading... I have realized this reading could go on for years!! 
I am sure most of you have told your stories before, but I am not seeing a thread dedicated just to that. So I figure, maybe it is time for one!!
I'll start...
I'm 31 years old and have been suffering from clusters for five years.
I suffered thru my first couple of cycles just thinking I had stress or other issues... never really paid enough specific attention to time, duration and frequency. My pain was usually a 6-7 on the Kip scale, probably why I just worked thru it for so long.
After a while this got old, so I went to my doc. He said "hmmm... headaches at certain times of day... works full time, two small kids... sounds like tension to me, have some muscle relaxers".
Looking for an alternative to pills that make me feel funky (an not in a good way... ha ha) I then went to a chiropractor who said "oh yes, this is because your neck is mis-aligned, we can fix this." Well I swear, that chiropractor did wonders. The first couple of weeks of visits, I actually sometimes felt WORSE after my adjustment but then one day they just vanished. Looking back I see it was the end of a cycle, but at that time I thought that chiropractor was a miracle worker.
A few months later... December of 2002... on they came again. Well jeez, it's the holidays, must be stress again. Time to see that chiropractor. I went, with no relief, no help... sometimes I would feel better for a few minutes but within ten I was just as bad and sometimes worse. Sometimes I went in with no headache and came out with one. Note, my appointments were usually on my lunch break, which is without fail when these bad boys come on. noon, like clockwork I get a shadow, and then around 12:30 "hello, I'm here!!"
Then in January I signed up for a meditation class. Two weeks into the class my headaches dissappeared. I thought "jeez, it is stress and this meditation stuff works great!!" A connection I did not make at that time is that incidentally I had started to supplement my life journey with a natural alternative therapy that I have noticed in my reading here has uses with the beast...
So months went by pf, and I would have a cycle start from time to time, but I was healing myself fairly regularly using this therapy, I just didn't know it. I thought it was just my life taking a turn for the better in general.
Then last spring I had a whopper of a cycle and went in to see my doc. He was unavaliable, but I was seen by a wonderful PA... who asked me a few key questions... "do these happen at the same time every day? Do they wake you from sleep?" and so on. She nailed it. Gave me a bunch of literature, a scrip for pred and verap, and an order for an MRI "just in case".
I ran home, spent the next few days on line and just could not believe it!! All the way down to the odd things... like how I pace when I get these headaches. My sister once teased me that I am the only person she knows who gets a headache and gets almost hyperactive...
Anyway, I found this forum a couple months later, registered and never posted. But then last Friday I had my first Kip 9... I sincerely hope this isn't the start of a new level of pain for me. Luckily I had an alt. therapy avaliable, and was able to use that... and I have only had shadows since, and those are only on the level of a Kip 1-2.
All I can say is my Kip9 gave me a whole new realization of what real pain is. I have given birth to two children, and I honestly can say this was worse. It just does not relent!! My husband was scared to death I was having a stroke or something, he is used to my clusters but like I said, they have always been a 7. Funny how that scale is like the richter scale.... definitley logorhythmic and not linear!! the difference between 7 and 8, or 8 and 9... cataclysmic.
So that is my story. Funny how when I look back over the last couple of years tho, I can see how my personal use of alt. has coincided with pf weeks and months. Only when I go without for a while do I get hit with a cycle. Now I know!! Whoda thunk a spiritual quest would have such physical benifits???
I do intend, however, to follow up with my MD after this last attack. I definitley need to find out about having some imitrex or another abortive handy in case another tsunami from hell hits me. And I think I will check out the kudzu, much to my Georgian husband's amusement....
PF wishes to my new and future friends. Lets hear about you!!!! 
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Jonny
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Re: So, what's your story?
« Reply #1 on: Apr 12th, 2005, 4:39pm » |
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Please!...either warn us about the length of your post or put it on tape and mail it to all of us.....LMAO
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| « Last Edit: Apr 12th, 2005, 4:40pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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samsara
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Re: So, what's your story?
« Reply #2 on: Apr 12th, 2005, 4:43pm » |
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Oh, I'm sorry!! sometimes I forget.. some folks might have dial up...
Here, I will summarize for you.
31
female
episodic clusters x 5 years
glad to be here
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Jonny
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Re: So, what's your story?
« Reply #3 on: Apr 12th, 2005, 4:44pm » |
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on Apr 12th, 2005, 4:43pm, samsara wrote:Oh, I'm sorry!! sometimes I forget.. some folks might have dial up...
Here, I will summarize for you.
31
female
episodic clusters x 5 years
glad to be here
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LMMFAO....Now THATS FUNNY.....LMAO
Edit to add....30 years chronic
14 with no diagnosis or meds
Washed up here close to six years ago and they all hate me....Fuck'em
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| « Last Edit: Apr 12th, 2005, 4:46pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Ghost
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Re: So, what's your story?
« Reply #4 on: Apr 12th, 2005, 4:47pm » |
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on Apr 12th, 2005, 4:43pm, samsara wrote:Oh, I'm sorry!! sometimes I forget.. some folks might have dial up...
Here, I will summarize for you.
31
female
episodic clusters x 5 years
glad to be here
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We love ya johnny !
Oh wait they hate me too.
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| « Last Edit: Apr 12th, 2005, 4:48pm by Ghost » |
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Illigitimus Non Tatum Carborundum
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samsara
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Re: So, what's your story?
« Reply #5 on: Apr 12th, 2005, 4:49pm » |
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Oh my god... chronic and 14 years no meds... there must be many bodies lying in your wake...
Glad to make your aquantence J. 
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clarence
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Re: So, what's your story?
« Reply #6 on: Apr 12th, 2005, 4:49pm » |
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Welcome, and glad you found us. (though, as everybody says, and will be said again, and with all sincerity I might add, sorry you had to...)
Thanks for sharing your story. You have a good way of telling it, and it made me laugh. Thanks, I needed it.
I started getting Clusters about 4 years ago. Was first diagnosed with shingles. Even thoguh I didn't get the blisters. When the pain returned a few weeks later, they said that it couldn't be Shingles, and that it had to be Lupus. Actually, the nurse practitioner called me at home on a Friday afternoon and told me that my test results came back as Lupus, and that the doc would call me Monday. I had no idea wht Lupus was so I got online and freaked out. Monday the doc told me that I didn't have Lupus, and that he was pissed at the nurse for telling me that, on a Friday afternoon without consulting hiom first no less. One hell of a weekend.
I was sent for an MRI. The Neuro told me straight out that he had no idea what was wrong with me. At this time I happened to see my wife's doc when I went in one time, and she mentioned that it sounded to her like clusters. I said, headache, this is no headache...
Well, she was right. I was relieved when they told me what it was, if only because then I had a name to put with the pain. It was about a year before I got the diagnosis.
I didn't find this family until last Summer though. Worst cycle for me to date. And I sure am glad that I have this family. I really don't think I could make it through without them!
Glad to meet ya!
Casey
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Langa
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Re: So, what's your story?
« Reply #7 on: Apr 12th, 2005, 4:51pm » |
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Welcome Samsara…
36 yo female
27 year sufferer
26 years episodic
cycle in June for 2 months every year
until June 04, the cycle that hasn’t ended yet…I say yet because I can hope right?
Langa
P.S. Jonny is full of it…we love him to death here…
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Ghost
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Re: So, what's your story?
« Reply #8 on: Apr 12th, 2005, 4:52pm » |
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lets see episodic x 27
no meds still
wife hates me
dog broke his tool
fight'n beast hand to hand
wife hates me
2 kids
did I mention wife hates me?
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Illigitimus Non Tatum Carborundum
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***WARNING*** Oxygen will rust your pipes!
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BlueMeanie
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Re: So, what's your story?
« Reply #9 on: Apr 12th, 2005, 7:15pm » |
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on Apr 12th, 2005, 4:44pm, Jonny wrote:Washed up here close to six years ago and they all hate me....Fuck'em
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Once upon a time, many many years ago. Got CH's and still get them. That's my story and I'm stickin' to it. 
And jonny can be rude, crude and obnoxious, but we still luv em'
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yikes-another-one
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Re: So, what's your story?
« Reply #10 on: Apr 12th, 2005, 7:41pm » |
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caught ch 6 years ago,
wuz episodic until sept 04...now still in pain...
sometimes zomig, othertimes, just dance around.
Greatful for this web place....
It cured my anxiety...
and my superstitous naivity...
In otherwords, it educated my arse...
and saved my life... so thanks you guys!!!!!!!!!
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nani
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Re: So, what's your story?
« Reply #11 on: Apr 12th, 2005, 7:54pm » |
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What a great idea this thread is!
My story:
My first CH episode was at age 16 (1973) , 2 weeks after childbirth. Misdiagnosed as an effect from anesthesia. Episodic until 7/99. My episodes were not "regular" during all those years.
Chronic since 7/99. 
Was not diagnosed until 7/99
Have been finding a great deal of relief since 2/4/05 using kudzu. Still chronic, but 98% PF.
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PerryGR
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Re: So, what's your story?
« Reply #13 on: Apr 12th, 2005, 8:46pm » |
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Welcome samsara.
My story:
22 y.o. male
sufferer for 3 years
chronic for 3 years
got diagnosed with CCH last June ('04)
came here right after my diagnosis for more info and found alot more than just that.
PFDAN to you,
Perry.
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Haven't posted in a while so let me re-introduce myself... Male, 25y.o., CCH sufferer for a little bit more than 5 years. Verapamil and Lithium seem to work well at the moment.
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Charlie
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Re: So, what's your story?
« Reply #14 on: Apr 12th, 2005, 8:57pm » |
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Welcome to the madhouse and stick around. You'll find lots of ideas and ways to deal with this horror.
I'm a lucky one. Got my episodics in 1969 when I was 23. I had two and sometimes three cycles per year. Spring and fall were assured in any event. Back then there weren't a lot of drugs but Inderal worked for me after a week or ten days. It didn't kill them but it made me sane for the most part.
In 1991 when I was 45, they disappeared. I don't know why other than that there is some evidence of an age factor.
Here is the technique that worked well for me:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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Kris_in_SJ
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Re: So, what's your story?
« Reply #15 on: Apr 12th, 2005, 9:21pm » |
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Hi Samsara,
50 yr. old female
Episodic clusters since the age of 41.
3-5 year apart episodes lasting about 10 weeks each.
First episode diagnosed as Shingles (sound familiar Clarence?) One long chronic shadow pain that lasted about 8 weeks. Many tests, many narcotics, nothing helped ... it went away.
Four years later, HA every night at exactly 8 PM. Icepick into my eye and temple lasting from 1 - 2 hrs. Shadows during the day. More tests, Imitrex injects (thank God!) and Prednisone Pack. Diagnosis confirmed. Verapamil started, but cycle almost over anyway.
Last year - much reading and research later - High dose Verapamil started immediately, Imitrex injects (split appropriately) and Prednisone Pack - cycle of pain kept to 5 weeks maximum.
Am now off all meds. Don't know when my next cycle will happen, but am knowledgeable about medical and alternative treatments, and and ready when it happens.
I thank this family every day (even Jonny)!
Kris
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E-Double
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Re: So, what's your story?
« Reply #16 on: Apr 12th, 2005, 9:36pm » |
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31yr old freak.....
episodic since Fall 1994 (2x a yr brief cycles for about 1 month ONLY AT NIGHT)
Last yr's cycle started full blown in May yet wife and I agree that the forewarning signs were occuring in March so I guess I've reached that certain word
Went undiagnosed/misdiagnosed/untreated.....BARE KNUCKLED IT (19 cycles without any treatment WOW!) until last June when my wife found this place....
I cried as I read the stories and realized it was me!!!
Had attacks going heywire day and night finally got to a neuro and had a HIT during my exam.....
Was quick to diagnose......finally I knew what was occuring.......
Cycle still has not broken but I am a lot more positive and do not live in fear since probably mid July of last year.....Worn out but not scared or anxious!
Stopped really questioning when it will end or when it will strike....an inner peace occured.
Love this place and like many here have a damn addicitive personality....addicted to the comfort of this place!!!!
Hugs to all!
Eric
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I can't believe that I have to bang my
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don
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Re: So, what's your story?
« Reply #17 on: Apr 12th, 2005, 9:40pm » |
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27 years old
incredibly handsome male
sinus headaches
since age 26
blow up doll deflated
I need a motrin
Edited to add:
Buff
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| « Last Edit: Apr 12th, 2005, 9:48pm by don » |
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TonyG1
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Re: So, what's your story?
« Reply #18 on: Apr 12th, 2005, 9:50pm » |
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39 y/o male
18 years episodic, sometime 2 cycles in a year, sometimes 2 years between cycles
Just diagnosed with this cycle ... so every cycle up to this
past one was no treatment ...  THANK whatever higher power you believe in for finding this site ... I do !!
The ppl here are gr8 !!!
BTW - I like your "... logorhythmic and not linear ..." analysis of the pain scale !!!
Don -- Got that motrin for you ...
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| « Last Edit: Apr 12th, 2005, 9:51pm by Tony3901 » |
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cootie
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Re: So, what's your story?
« Reply #19 on: Apr 12th, 2005, 9:52pm » |
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welcome !
Neurotic supporter
Whineing champion
lives up to blonde jokes
loves tatoo's and cats
gets off topic alot.............
implanted Pam
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Gator
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Re: So, what's your story?
« Reply #20 on: Apr 12th, 2005, 11:51pm » |
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"I didn't do it, nobody saw me do it, there's no way you can prove anything!"
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samsara
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Re: So, what's your story?
« Reply #21 on: Apr 13th, 2005, 1:15am » |
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Wow, thank you all so much for sharing. It is nice to get to know you all...
Eric...
Quote:Stopped really questioning when it will end or when it will strike....an inner peace occured.
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I really like that.. so true, not just about this either!
I find it interesting that more than one of you were at some point mis-diagnosed with shingles. And lupis too...
I guess a lot of stories have also re-affirmed that while the doctors are "experts", we are the experts of ourselves. They may have the ability to diagnose, but we have the advantage of knowing ourselves far better than we can express to the experts in a short 15 minute appointment.
It is a little disappointing that so many have had to teach their doctors, but think of the other CH sufferers you may be helping in the future by being a teacher.
Charlie, thanks for sharing that technique. I have self-taught a similair technique, I guess as a by-product of meditation... sometimes when I am in the throes I will close my eyes and breathe deeply, imagining that with each deep in-breath the oxygen is rushing to my head, grabbing the hurt and when I exhale, the CO2 carries some of the pain out with it. I actually visualize this, I think you have to for it to have a chance. It never stops it, but it can tame it a bit if you really give it a chance. It is hard to stay centered and concentrate during these things tho, discipline for sure.
keep the stories coming folks!
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sandie99
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Re: So, what's your story?
« Reply #22 on: Apr 13th, 2005, 1:26am » |
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My story:
female
nearly 25 (tomorrow! )
first ch has in fall 2001
first full cycle in fall 2002
diagnosis in january 2003
chronic since fall 2003
currently on verpamil
painkiller maxalt rabitab
Here I am, countless meds and six docs ago...
Glad to be here!
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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samsara
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Re: So, what's your story?
« Reply #23 on: Apr 13th, 2005, 1:37am » |
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Let me be the first to say happy birthday Sandie!!!
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ccbiggsoo7
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Re: So, what's your story?
« Reply #24 on: Apr 13th, 2005, 1:38am » |
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Happy 25th Sandie!
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chris
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