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        Cluster Headache Help and Support >> Cluster Headache Specific >> How did it all start?
        
(Message started by: tool8162002 on Apr 5^th, 2007, 7:10pm)

Title: How did it all start?
Post by tool8162002 on Apr 5^th, 2007, 7:10pm

Hi everyone,
I'm sure some of you will remember me... About 5 years ago I was a regular here. My dad was going through a terrible cycle of cluster headaches.. With the help of PinkSharkMark, Monique , and everyone else.. My dad broke the cycle (shroom therapy)

Luckily for my father, he has never had a headache since then. Since then everything has been going fine for him... Not so the case for me.

Since jan. of this year, I've been experiencing head pain, and head pressure. I know this isn't a cluster headache, but I can't help but wonder if maybe its the start of clusters...

How did it all start for you guys?
Since jan, my life has sucked. Constant head pain, and alot of pressure. I've been in and out of the doc's with no answers... Blood tests, ct scans... All negative... No one knows whats wrong...

Later in the month, I have an appointment, with an ear specialist, and a nuerologist..... I'll keep you guys updated...

thanks for letting me vent

BOB BAKER

Title: Re: How did it all start?
Post by Yorky on Apr 5^th, 2007, 7:32pm

it started with 10 years of midiagnosis ,

then i got a name for it (lame sounding "cluster headache ")

then it seemed to help , having a name....
can get my head round life......knowing im not mental (/)
ps i dont want to call you by your name...(tool in england means "idiot")

lol (englands idiot) ;)

Title: Re: How did it all start?
Post by Linda_Howell on Apr 5^th, 2007, 10:12pm

Quote:

I know this isn't a cluster headache, but I can't help but wonder if maybe its the start of clusters...

Could you clarify that sentence for me Bob?

If you KNOW it isn't a cluster headache then why would you assume it's the start of one?

I am glad to hear about your Father and hope to hell it isn't CH you have to worry about. Maybe a deep sinus infection? I say that because I have never experienced pressure with CH....only unremitting, boring, bomb going off in my head searing pain.

PLEASE do keep us up to date on this, as I am curious.

Linda

Title: Re: How did it all start?
Post by BrianJ on Apr 6^th, 2007, 7:07am

Mine started just as quick as every cycle ive had i went from pain free to WTF is this pain am i gonna die 3 hours later it was gone but came back the next day same time , 6 weeks i thought i was going to die worst 6 weeks of my life mine are like clock work im lucky in that way i know when the band is about to start tuning up

Title: Re: How did it all start?
Post by Judge_Smails on Apr 6^th, 2007, 8:51am

Mine started as issolated CH's - I always assumed that they were migraines even though I never had the aura or other migraine symptoms. Then 1 lucky day my issolated headaches turned into a 4 week cycle.

So to answer your question - the "type" of pain or headache was the same the first time as it is now.

Title: Re: How did it all start?
Post by Guiseppi on Apr 6^th, 2007, 11:22am

My wife will verify I have no long term memory, good old what's her face knows everything about me! I vaguely remember these nasty piercing headaches in my teen years that would hit for a short time, days??weeks???, wasn't until I got married and my wife made me go to the doctor I finally got them figured out. From what I do recall it's like Judge said, the CH pain is very unique and I never confuse it with a stress, sinus infection, or hang over headache! Good luck and really glad to hear about your dad!

Guiseppi

Title: Re: How did it all start?
Post by tool8162002 on Apr 6^th, 2007, 5:52pm

on 04/05/07 at 22:12:36, Linda_Howell wrote:

There is just so much pressure in my head, something got to give. I wasn't sure if a CH was brewing.. It's a sucky feeling, and my god damn docter doesn't seem to give a damn. I've been on Nasal Sprays, Anti-Biotics, and last time I was in, he gave me a god damn anti depressant. That kind of pissed me off.

next week I'm going to a dr that specializes in Eyes and Ears.. And the week after that I got an appointment with a neurologist..

I hope we can get to the bottem of this.. I have so much pressure in my head right now, i feel like i could just drop dead... it's scarey.. and none of these docters have any urgency in helping me..

Im sure you guys could relate!!!!

Title: Re: How did it all start?
Post by Guiseppi on Apr 6^th, 2007, 6:14pm

It's a frustrating feeling going to an "expert" and not getting any help, Lord knows we hear you. Keep being pushy and take an active role in getting a diagnosis. As most people here will tell you, you are by far your best advocate! Good luck!

Guiseppi

Title: Re: How did it all start?
Post by burnt-toast on Apr 6^th, 2007, 6:36pm

On an airplane flight between Pittsburgh and Houston - Thought it had to be an Aneurism and that I would never live to see the plane land.

Hopefully you find that you have something more controllable or treatable than CH.

Best wishes,

Tom

Title: Re: How did it all start?
Post by Rockcoat on Apr 6^th, 2007, 7:38pm

It started out of the blue for me way back in the mid 80's. I was working in a factory and I thought I must have been exposed to some nasty kind of chemical or something. Damn things brought me to my knees 3 or 4 times a day for weeks. I too thought that I must be having a brain aneurism. Even after I was diagnosed I requested a CT scan to be sure.
I was fortunate to find an excellent Neurologist who knew straight away what I had because he suffered from them too.

Title: Re: How did it all start?
Post by ClusterChuck on Apr 6^th, 2007, 9:10pm

How did it all start?

Well, i thought you were old enought to already know this .. But, it starts out with an egg, in the uterus ...

OH .. That is not what you meant??

Me bad!!

Chuck

Title: Re: How did it all start?
Post by Linda_Howell on Apr 7^th, 2007, 1:11am

Quote:

I hope we can get to the bottem of this..

I hope you can also. PLEASE let us all know how this turns out. Every one one of us here cares that you get the treatment and diagnosis you deserve.

Pay no attention to Guiseppi when he say he has no short or long term memory. He lies. He has the memory of an elephant. ;;D

Title: Re: How did it all start?
Post by Charlie on Apr 7^th, 2007, 6:41pm

I was 23, sitting in front of a TV watching Johnny Carson and I had my first hit. Naturally, I thought I was doomed and at death's door. When it returned later that night, I made an appointment to see my doctor (he was a neurologist and I was familiar with them because of my epileptic seizures) and he diagnosed it right away. There wasn't a lot to do for it in 1969 and I just went through my cycles for several years until I met the one that showed me his technique. It worked most of the time:

Give it a shot.

Dr. Wright’s Circulatory Technique:

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.

Charlie

Title: Re: How did it all start?
Post by darkwalker on Apr 16^th, 2007, 10:34am

I thought I had a tumor and was about to bite it. It hit me so suddenly, with such force, I just knew I was dying. I expected to hear a pop or a squish and then nothing.

Sadly, I lived to experience the pain again and again. >:(

Title: Re: How did it all start?
Post by Shedz on Apr 16^th, 2007, 10:52am

My 1st hit happened in the middle of the night, I was married at the time to a migraine sufferer and she convinced me I was having a bad migraine attack so gave me some of her medication. didn't have another hit for a few months and then started getting random hits at random times. I was like this for about 18 months until one November I got hit several times a night all the way through till February. I was treated for migraine until two yrs ago when i changed Dr but still didn't get the correct meds until last year after i found this site!!!! Now my o2 and injections are my best friends ;) (along with this website of course :))

Title: Re: How did it all start?
Post by Maffumatt on Apr 16^th, 2007, 12:52pm

The first one I remember was in the late 90's I was a saw hand for a logging company...I thought it was the heat, but I was wrong.

Title: Re: How did it all start?
Post by Rosybabe on Apr 17^th, 2007, 8:12pm

my first hit was 23 years ago, I remember we were eating when I had this horrible headache, my family was very scared because only a year before we had lost my little brother of cancer, so everyone thought it was a tumor, very ugly feeling...had to go through a lot of test to rule that out...but after many years , I did not get diagnosed with clusters until about 12 years ago, but of course it was the spanish term for it (neuralgia de racimo o enfermedad de Horton), I was living in Mexico then. Since then I have tried different treatments, some work once some don't work the next.. and here I am...

Title: Re: How did it all start?
Post by BarbaraD on Apr 18^th, 2007, 9:35am

I woke up in the middle of the nght screaming with this pain in my head. Two months later (and a couple of trips to ER and a doctor who gave me demerol) my sister-in-law decided I had migraines and took me to Scott and White Hospital (a teaching hospital) and I was diagnosed with CH and given the right meds to stop that episode.

Was episodic until 97 when I went chronic and it's been a merry-go-round ever since.

Hope it's not CH, but you're in the right place if it is. Keep us informed.

Hugs BD

Title: Re: How did it all start?
Post by Kirk on Apr 21^st, 2007, 2:17am

For me it was May of 69. I was walking along heading for the mess hall when it hit. For the next hour I thought I was going to die. I was misdiagnosed until May of 92.
Now O2 is my best friend.

[smiley=smokin.gif]

Title: Re: How did it all start?
Post by Trooper on Apr 21^st, 2007, 9:31pm

I remember that day so well, it is hard to believe it has been 17 years!! I was 17 and was dozing in my science class when I shot straight out of my chair with the most sickening pain ever. Back then my ha's only lasted about 15 mins. and I would get maybe 3 or 4 over a week long period and then they would go away as suddenly as they came. I was so young and dumb back then I never realised how potentially serious these symptoms were. Then about 2yrs after they started I came across an article in a health magazine talking about cluster headaches, my symptoms were an exact match. I was relieved to know I was not dying of brain cancer but to my dismay the article said the only thing you could do to help clusters was to take heavy sedatives. Yes, I kid you not!! The article also said that if you quit smoking your headaches would go away within 7 years. (keep in mind the internet was not around in 1991 so finding info on CH was alot harder back then) Well, I did not give up smoking and taking drugs to make me sleep all day did not seem like a good idea either. I tried over the next 9 or so years using different otc headache meds and found some reliefe with sudafed and other antihistimines. In 2001 though, I had a cycle that lasted longer than usual. I had just gotten insurance for the first time in ages and I went to see a doctor about my CH to see if there was any new treatments that had come up in the last 10 yrs. The doctor refused to give me anything!! Did not even reccomend me for an MRI or CT scan. Told me to try Excedrine Migraine!! I would love to go back and kick that son of a b tch to this day!! The ha's got worse I was taking 3 sudafed's every 2 hours and living in rebound hell. This went on for another 2 weeks until I collapsed at work one day and they carted me off in an ambulance. Apparently I had taken so much sudafed it had caused my chest wall to become inflamed. The symptoms mimic a heartattack and the pain is just as agonizing as a cluster headache. It took me several days to recover and I vowed at that time I would get some real professional answers. My headaches ended with that day so it was another year before I started going into a cycle and subsequently found this board. I found a pcp who was a little familiar with clusters and was willing to try some treatments as well as have the MRIs done.

Over the last few years I have come to this site during my episodes and I have learned so much. I have never posted because I am not the most computer savy and I have to admit the when the cycle ends I like to forget I suffer from this. I can no longer live in denial because my cycles are growing longer and my remissions are growing shorter. I want to thank DJ for starting this and for all of you that post here offering your support and opinions.

Wishing you all PFDs.
Trooper