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(Message started by: F1World on Oct 17^th, 2002, 2:10am)

Title: Hello.... this sucks.
Post by F1World on Oct 17^th, 2002, 2:10am

I came across this site today trying to find out some information about something called Cluster Headaches. My doctor diagonosed me with this "condition" about 2 years ago, after having perpetual headaches that lasted for about 2 months. I sort of forgot about the horrors and tried to put it all behind me... until about 4 days ago, when the nightmare returned. I am asking for an opinion if this REALLY is what they say it is...... please bear with me.

It started about 2 am... I was awakened from my sleep with this burning senstation in my ear and back of my neck, I tried to shift positions and return to my peaceful sleep, but it wasn't happening. Something in my mind told me immediately that I was dealing with the same crap I did a couple years ago, and even though I tried to convince myself that it wasn't the same, I KNEW it was. My right eye felt like I took a couple punches, and my right nostril was starting to leak, I could almost feel fluid running behind my back molars on the right side of my skull. I got out of bed, and went downstairs, all the while, this pressure in the right side of my brain kept building, and building, my right eyelid was beginning to swell shut. I was squinting and it was tearing. Maybe 2 minutes had elapsed when WHAM, the pressuse went from uncomfortable, to downright insane. The back and right side of my neck felt like it was on fire, my brain on the right side was numb, my teeth were aching.. and my eyeball felt like it was gonna explode..... my god, I was trying to sit in the chair, and for some reason, with my head resting on my right shoulder, it seemed I was getting a bit of relief, when this wave of pain ripped through my head... I kept looking at the tears coming out of my eyes, convinced there was blood pouring out... I dropped to the floor and pressed my hands so hard against my temples that I thought I was gonna crush my skull, it wasn't helping, I got up and well..... I went insane.... it's the only thing I think I can describe it.... stark raving lunatic insane.... I was pacing from room to room, crying, flinging myself to the floor, getting back up again... holding my head, squeezing my temples, I looked up to the MAN above and literally begged him, that I would do anything, ANYTHING, just make this madness stop.... he wasn't in that morning, and I suffered... I wanted to die, just simply that, I wanted death to take me as I just could not deal with this excruciating, horrible, horrible pain. I was chewing Tylenol like tic tacs.. screw swallowing, I was chewing them into a paste .... 10 minutes passed, then 20, then 30... I was back in the chair, I swear my brain was cooked... I mean, the entire right side was numb from forehead to behind my right ear was numb, I was rocking myself in this chair.. wimpering like a lost little boy, and then, as suddenly as it started... it was gone. I was SO freakin exhausted, I couldn't find the strength to climb back up the stairs... so I slept in the chair... for 2 whole hours, when this madness started all over again. I could not belive this shitty ordeal was starting once again... who the hell did I piss off to bring this upon myself? I would not wish this on MY WORST ENEMY, how the hell does one deal with this? By 6 am, I was wasted, I mean, I had nothing left in the tank, I just didn't give a rats ass anymore, and then, it was gone.... I just couldn't believe it was finally over, or was it? I was fine the entire day, a little worse for wear I will admit, but no headache... until about 2 am the next morning, and the morning after that... and here I sit at 1 in the morning on the fourth night... I am terrified to go to sleep.. I know what will happen, I can feel it coming on already... from the little I have read, is this what you guys mean by "shadowing"? It's a low pulse in the right side of my brain, and inbehind my right eye. I know I have to go to the doc tomorrow, to get something for this craziness... I cannot go another day without some kind of relief. Tylenol doesn't do it, no matter how many I chew, nor does motrin. I am terrified.... it's like a freakin Freddy Kruger movie.. where everyone is fighting to stay awake, cuz they know what's comin a knockin once you fall asleep. So, I ask you good people.... ARE THESE SYMTOMS OF CLUSTER HEADACHES??? Do they stay with you for life or what's the deal with them? Does it stem from some kind of tumor that I am totally unaware of? I live in a small city in central Canada where there just not a lot of information about this around here. My doc is at somewhat of a loss, so I have been doing my own footwork... any advice that anyone could give me would be of great help.... whomever said " You have nothing to fear, but fear itself" never had these kind of headaches... cuz I don't fear much.. but I tells ya... I sure the hell fear what's gonna happen in the next few hours. I am sorry for being so long winded... but I do appreciate the time you took in reading this, and hopefully someone can point me in some kind of direction that can help. Take care all.......................

Title: Re: Hello.... this sucks.
Post by marty on Oct 17^th, 2002, 2:57am

It's like you have been reading my CH log-book!!!

I recognize myself in all that you say except that I get attacks during the daytime to. I went for close to 5-years before I was diagnosed with CH. I had the same thoughts that you do - Do I have a brain tumor?, Am I having a stroke? etc.

The best thing that I have ever read or heard came from this web site: Pain will not kill you! Pain in itself is not dangerous! There is an ending to all attacks!

You need to see a Doctor as soon as possible - Bring print-outs from this site - get all the information that you can find and take it with you to your Doctor - A good advice that is given often is that you have to educate your Doctor.

Sorry that you ended up here - Read as much as you can on this web site - it will to a certain point set you at ease (I hope).

Start a "log" of your attacks - Duration, severity etc. And as I seem to come back to (some even agrees with me), what works very good for me is strong coffee - large 7-11 cups and I drink it very fast.

Stay strong

Marty

Title: Re: Hello.... this sucks.
Post by kim on Oct 17^th, 2002, 7:21am

Hi F1,

First I sorry you are here, but glad you found this place. That description was just too damn familiar.

I urge you to follow the links at the left - go through all the buttons. At ouch website there is a library and much more. You will be astounded. There is also a list of docs which can be very helpful in finding a knowleadgeable doc.

Good luck and well wishes. Kim

Title: Re: Hello.... this sucks.
Post by Margi on Oct 17^th, 2002, 10:00am

Wow, F1 - you just described EXACTLY what I've witnessed my hubby go through when he's in cycle. I'm so sorry you're getting hit, fellow Canadian (we're in Calgary).
There ARE some things you can try that dont' require a prescription, although you really should try to get into a cluster knowledgeable neuro a.s.a.p.
First of all - ice. We use those gel-filled things that never really quite freeze. Mike (my husband) lays one on the back of his neck at the onset of attack. It really helps him to stay as calm as possible and therefore keep that blood pressure down to a dull roar. If you don't have ice packs, use frozen peas or corn - you can also hold them right on your eye, where it hurts. Drink ice cold water also - both of those things fool your brain into thinking your body is cooling down, so your pulse rate automatically lowers.
You could also try the Water x 3 treatment - it has worked for some, especially if you're otherwise med free. If you can get your hands on some oxygen - it's a very popular abortive. Mike uses welder's oxygen, but most neuros will prescribe it now for clusters. If you can't get that - you might try a brisk walk in the cool air right now (I see you guys are getting snow today!) - this will get some oxygen into your system.
And, to get yourself thru the night - go to Shoppers Drug Mart and get yourself some Generic Gravol (they're called Travel Tabs) - take 2 before bed and it just might get you thru the night, attack free. It doesn't let you get into REM sleep which is when most attacks occur. You can only take it for a few days in a row because it does cause REM deprivation, but sometimes even just a couple of nights of consecutive hours of shut eye makes things a little easier.
To find a neuro near you - click the OUCH button on the left - then the first menu above the map has an item called Recommended Doctors, listed by country and then for Canada, by province. We found one here in Calgary that helped us immensely. If the receptionist gives you the runaround - or if your GP won't give you a referral, EMAIL them and tell them you are a clusterhead and need to be seen immediately! We did that and (because of our shortage of GP's here in Calgary), they brought us in that afternoon. If you need help writing a letter that will catch their attention (although, I doubt that you do - you're an awesome writer) email me at moxie_miss@hotmail.com. I'd be happy to help.
Hang in there, friend - you've found the best place on the web for support and advice.
Please keep talking, ok?

p.s. I've just re-read your post and, no, clusters aren't fatal. They don't, by themselves, cause any tumours - although you might have a 'cluster bump' on the back of your neck at the base of your skull. Lots of sufferers do and it's usually just a ganglion lump - nothing that will kill you. It sounds like you're episodic, meaning that you will go 'into cycle' as you are now, and then you will go into remission, like you have been for the last two years. I'm sorry to tell you that there hasn't been a cure found yet. Popular abortive drugs here are Imitrex, Zomig, Maxalt. Preventatives are verapamil, lithium, prednisone burst, etc. Talk to your neuro about these drugs. If he's worth his salt, he will know lots about them and what dosage will be best for you. Sorry, I know none of this is good news - cluster headaches SUCK, but at least we can help you battle them and reassure you that you're not alone with this.

Title: Re: Hello.... this sucks.
Post by Bob P on Oct 17^th, 2002, 12:03pm

Now if, in the middle of all this, you were inclined to go play on your computer, then you would definately have clusters. (just joking to make a point)

Sounds like so many nights that the clusterheads around here have spent. Don't let anyone tell you have a low pain threshold either. What you described is what real clusters do to you.

Here is what you need to do:

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

Print it out, take it to your doctor and tell him this is what you have and these are the treatments you want.

Oxygen and Imitrex injectable to abort attacks that are building.
Verapamil or prednisone to keep the attacks from starting (or the prednisone right now to stop the attacks and also start taking the verap so it will build up to useful levels when you have to stop taking the prednison)(btw - for me, prednisone will stop the attacks in 1 day).

If there is anything I can do to help let me know. You can get me at:

bob@pahlow.net
rpahlow@calpoly.edu
(805) 756-5223 - work
(805) 528-5151 - home

I've been doing what you describe for 32 years and I'll share with you whatever I can.

Bob

Title: Re: Hello.... this sucks.
Post by Drk^Angel on Oct 17^th, 2002, 12:11pm

Welcome to the board! Sorry that the beast is using your cranium for archery practice using those exploding arrowheads that Rambo used. Good luck!

PFDAN.............................. Drk^Angel

Title: Re: Hello.... this sucks.
Post by Mark C on Oct 17^th, 2002, 12:33pm

Welcome home F-1.

Welcome back D-A ! ;D

Later guys,

Mark

Title: Re: Hello.... this sucks.
Post by SteveY on Oct 17^th, 2002, 12:33pm

F1, you nearly have all the symptoms of CH except,

they're on the left ;)

Get to a neuro as soon as you can, I've been there, you know when you're begging the man to help and you get his answer machine.

Print out Bob's info and take it to your GP, and don't take you have sinus pain, migraine etc from them.

You have CH.

Best of luck,

Steve

Title: Re: Hello.... this sucks.
Post by suzy617 on Oct 17^th, 2002, 4:18pm

F1, God I got the chills reading your post. I have seen many of those nights (going thru them now) and to see someone else describe it like that does comfort me some, although not wanting you to be in pain. If only our friends and family who have never experienced this could just understand. Hope you don't mind but I emailed your story to a few of my friends, I just couldnt put it into words like you did. Hope you find some relief fast, let us know how your doing.

Title: Re: Hello.... this sucks.
Post by Margi on Oct 17^th, 2002, 4:36pm

I agree, Suzy - I think DJ should make F1's post one of the buttons at the left. That's probably the most chilling description of true clusters I've seen in a long time.
:( man, i hate this disease.

Title: Re: Hello.... this sucks.
Post by Ted on Oct 17^th, 2002, 4:40pm

I think last night's post by Ueli about what a real cluster headache is should have it's own button on the left. Or right... I'm not picky.

Title: Re: Hello.... this sucks.
Post by domm on Oct 17^th, 2002, 5:47pm

F1 - your description brought me back to my first cycle - when I didn't have a clue (leave it alone, boys....) it actually brought chills. You need to get thee to a doc who hopefully knows something about CH. If not, print out everything you can find here and on the OUCH site (buttons on the left) and educate them.
Oxygen, Imitrex and a preventative. For me - Verapamil, but there are many others out there that work.
Hang on - things do get better - and you found the right place for help.
good luck
domm

Title: Re: Hello.... this sucks.
Post by 9erfan on Oct 17^th, 2002, 6:40pm

F1 - Welcome and I'm sorry to say YES you are suffering from what we fondly refer to as the Beast. It sucks that he has decided to make nightly visits to your house. Hopefully, this cycle won't last too long.
You've come to the right place though! You will find more info & support about clusters than anywhere else you can go. Most of the people here know more than most Dr's when it comes to this mystery. If you have family & friends who find your current condition unbelievable, just send them here for an education.
Here's hoping your nights get better!
Virginia

Title: Re: Hello.... this sucks.
Post by 2late on Oct 17^th, 2002, 6:44pm

F1 welcome to the board! ...........2late

Title: Re: Hello.... this sucks.
Post by suzy617 on Oct 17^th, 2002, 7:45pm

My Dr. finally returned my phone call tonight, wanted to ask him for rx for oxygen. He is so unfamiliar with CH so he was reluctant to write it for me. I gave him this website and told him I learned more in 1 day here then I did in my 21 years of having this crap. He promised to come aboard and check it out. Better be soon before I decide to drive to his office when I'm having an attack and blow his brains out! Oh yea, silly me, I cant drive with my eyes closed using both hands to push my head in.

Title: Re: Hello.... this sucks.
Post by Ted on Oct 17^th, 2002, 8:32pm

Here Suzy. I usually post this for insurance problems and O2 but it should work for your doctor too. Click here:

http://www.clusterheadaches.com/wwwboard/messages/81233.html

Title: Re: Hello.... this sucks.
Post by paul_b on Oct 17^th, 2002, 9:36pm

Yikes! What a description. Read like my worst cycle. Not only the pain but the anxiety about their returning if you sleep. All the helpful data is here on "site" along with extermely knowledgeable members. To help with the anxiety of the sleep/pain syndrome, I always had things prepared before I went to bed: ice packs in refrig. coffee at the ready, imitrex and ox2 at the ready and of course standing in the shower. I sometimes was on my knees at the side of the bed moaning and rocking with my arms on my wife's back or legs. She hung in there with me until it passed. Having a good supporter is helpful. Even had a terrior I called Cluster. He would be my companion when I did not want human contact. A good buddy. Truely know what you are going through. Enjoy the pain free times until the Beast takes a hike. paul b

Title: Re: Hello.... this sucks.
Post by Charlie on Oct 17^th, 2002, 11:07pm

Welcome to the madhouse and that was quite a read. You pushed a lot of buttons. Everyone is right. Do the research and try to soak up as much info as you can.

Your MD would be unique if he knew a fraction of the CH material here.

Here is a vascular technique that helped me:

Dr. Wright's Circulatory Technique:

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand