Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Jul-Sep 2003 >> Newbie to it all... HELP
        
(Message started by: mywhitecougar on Aug 2^nd, 2003, 7:21pm)

Title: Newbie to it all... HELP
Post by mywhitecougar on Aug 2^nd, 2003, 7:21pm

Hello Everyone. I am very new to this hell, and would appreciate lots of help. ??? I got my first attack Wed night and have been going through hell since. I am only 19 and lead an active life which involves working as an ice-skating instructor and autocrossing as well as bring a full-time pre-med student. Basically, i have a few questions now, and will have more as i learn more.

First, does anyone else experience a feeling like the whole side of their body (whichever is effected) "fell asleep," and by this i mean is kinda of tingly and numb? Each time before i get an attack of head pain, i get the body issue.

Also, does anyone suffer from paroxysmal hemicrania, either chronic or episodic. I personally believe, based on the rediculous amount of reading that i have done in the past few hours since my last string of attacks subsided, that this is a more accurate description of my condition.

Unfortunately for me, I cannot get an appointment with a neurologist for almost 3 months because the ones employed in the building for my health insurance are only there 2 days a week, one day apiece. >:(

I have had migraines since the age of 8, and would take one of those everyday for the rest of my life over what i am going through right now. :'( ANY help will be much appreciated.

Title: Re: Newbie to it all... HELP
Post by Mark C on Aug 2^nd, 2003, 7:27pm

Welcome to the board MWC,
Sorry you need us but glad you are here. We know all too well how you feel. I will attach a couple of my favorite links you may have missed here (http://www.clusterheadaches.org/comparison_table.htm), here (http://www.clusterheadaches.org/library/general/index.htm) and here. (http://www.headaches.org/consumer/educationalmodules/migraine_module/headache_diary.pdf)

Good Luck,
Mark

Title: Re: Newbie to it all... HELP
Post by Patrick_A on Aug 2^nd, 2003, 7:34pm

Sorry you had to suffer bro. Welcome to the CH site though!

I personally dont have any tingling in my body but that doesnt mean its not CH.
My 1st feeling is a pressure on my temple in front of my ear, then i start getting a stuffy feeling in my nose and my eye tends to run with tears. Then it just escalates till it is practically unbearable. Kind of feels like i have a fireball behind my eye that wants out!
Kind of like a Roman Candle going off behind my eye!!

Patrick

Title: Re: Newbie to it all... HELP
Post by Prense on Aug 2^nd, 2003, 9:58pm

Ditto to what Mark said...I am ignorant to how college kids (don't take that the wrong way, I am not a whole lot older than you) in school and health insurance works, but if it is CH, odds are your cycle will be long gone (hopefully) by the time you see the doc. Tingling? Nothing that was not induced by related meds. However, the last neuro I saw mentioned MS which can cause paralysis anywhere and for any duration at any time as well as some nasty HAs. For me, MS is not ruled out, but the signs point too strongly towards CH. I have yet to have a MRI or a spinal tap done which will help in ruling out MS. I just don't have the other signs for MS, so I am not worried about that, and I fired that neuro anyway. :P

If you want, you can describe your attack here and see what the opinions are. Just remember, they are opinions. They stopped letting me practice medicine when I did my first ancient and secretive dance...poor cat. ;D

Best wishes!
Chris

Title: Re: Newbie to it all... HELP
Post by Big_Dan on Aug 2^nd, 2003, 11:22pm

Man.. you couldn't find a better place to get information.... glad you found us... sorry you need us...

... try to let the Neuro know that it's an emergency, and you may be able to get in sooner than you think... I've gotten in same day a few times....

... and I've never experienced tingling or numbness... numbness would be nice though... ;)

-Big Dan

Title: Re: Newbie to it all... HELP
Post by OneEyeBlind on Aug 3^rd, 2003, 1:28pm

The tingling and numbness would have me worried. Try and get that appointment moved up. Just keep calling. And in the meantime keep reading. Take charge of your illness ...... somethimes the doctors are just too busy to do the analysis !

Title: Re: Newbie to it all... HELP
Post by Linda_Howell on Aug 3^rd, 2003, 1:47pm

If you're a pre-med student, then you will find you will only get a 5 hour classs on headaches in med school.

Sad, Huh. ? And that involves ALL kinds of headaches.

Never heard of the tingling on one side either and I am chronic. may want to check that out.

If you can't get an appointment for 3 months......try try again. with SOMEONE ELSE.

Now......go to the links here and educate yourself, a lot more than they're gonna give you in med school.

We wish you luck unbounded by pharmacies and Ins. Co's...........Linda

Title: Re: Newbie to it all... HELP
Post by cootie on Aug 3^rd, 2003, 1:52pm

Hi mywhitecougar......where'd ya come up with that screen name.....cats or cars ?) Sorry you have to have such pain.....can you try checking around for a regualr doc or internalist that may have some knowledge on CH to get you buy till you can get into the neuo ? We found a great doc that has a big interest in CH and we feel lucky....he seems to have alot of knowledge also and even knew about alot of the newer info to us we learned at the convention ! Good luck to you.......Pam that LOVES cats of all types

Title: Re: Newbie to it all... HELP
Post by mywhitecougar on Aug 3^rd, 2003, 4:05pm

Unfortunately, the only way i can get into a neurologoist any sooner is to go off my health insurance, which i cannot afford to do. I've been calling every day to see if there are any cancellations, but people tend to keep their appointments because they are so hard to get. My PCP is away on vacation, and the doctor i went to instead had some knowledge of these headaches and has heard of them coming with neurological side effects such as mine, which is at least a little comforting. I have had periodic MRI's because I also suffer from frequent regular migraines, and was working on trying to get to a neurologist again for that anyway. I NEED to be on some kind of preventative medications because I get headaches every 2 weeks lately, and thats when i NOT stessed with school. Thanks you guys for getting back to me.

Pam-- the SN is a reference to cars, but i am also a cat lover.

~*~Ginger ~*~

BTW--- I'm not a bro- All girl here ;D

Title: Re: Newbie to it all... HELP
Post by Kirk on Aug 3^rd, 2003, 4:31pm

I have probs with my right side, but that is from some physical trauma from last year. Other than that I do not recall anyone ever posting a symptom like that.
By the way avoid falling from a mast on a boat and missing the water.

sorry to see you here. Grab an oar.

TTFN

Title: Re: Newbie to it all... HELP
Post by Charlie on Aug 3^rd, 2003, 6:27pm

Very sorry that you may have this horror. Getting an appointment with a neurologist shouldn't take anywhere near so long. One suggestion is to say you aren't sure what you have. Many of them don't take "headaches" seriously. Just an idea. Meanwhile try a GP. Let him know what you think it is and the long wait for a specialist. You have nothing to lose

Here is my old neurologist's technique. It works for many. There's a followup in the next post.

Dr. Wright’s Circulatory Technique

This technique significantly helped to shorten my cluster headache attacks.

It involves concentrating on trying to redirect a little more circulation to the arms, hands, or legs. It can described as a kind of internal “flexing” or “push.” 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. If you do, it never will. Every now and then it can 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 this method. The doctor, while holding his arm at his side, 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 the same day. 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 dealing with this horror, I always gave it a try as I had nothing to lose but pain. I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly kills the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes real concentration.

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 beast. 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.

Give it your best shot and I wish you the best of luck fighting this demon.

Charlie Strand

Title: Re: Newbie to it all... HELP
Post by Charlie on Aug 3^rd, 2003, 6:29pm

Part 2

I’m asked now and then to add to my description. I’ll try but it it‘s a bit unpolished. Perhaps it will help even in this crude state. What I’ve written is probably five times what I got from Dr. Wright. Here is what he did: He stood up by his desk and held out his arm and asked me if I could make my hand warmer with circulation. He said it’s not strenuous but internal, but not some kind of psychic or meditation thing. It isn’t meditation, yoga, introspection or something you picture or imagine. It’s physical but not some kind of Popeye flexing thing. It is a concentration on circulation. I don’t really know how to describe it but let me try this:

This isn’t what’s happening but maybe if you think of it as an internal flexing or expanding of the artery into the arm while at the same time trying to literally push blood into or filling the arm as if it’s an empty vessel. I used to pretend I was pushing blood down my neck while looking at my shoulder and trying to feel my circulation and at the same time, pushing it over the shoulder and into the arm. It’s nuts, I know, and I’m dead sure that this isn’t what’s going on, but it seemed to help when I started. It’s second nature now and I can do it while typing. My left hand gets very red and very warm. You can do it with both arms and legs it you want. There is one man who wrote in the guest book long ago, that he stood barefoot on a concrete floor and it would often relieve the headache after a short time. My theory is that the body tries to keep the feet warm with increased circulation. I think this is also the idea behind the exercise theory. Oxygen is needed to work the muscles and there is just so much blood to go around. Maybe this draws just enough to other areas to ease the pressure in the head. This may also be why we get the funny posts that sex can sometimes seem to be helpful. This certainly does affect circulation. Anyway, to me, cold water, exercise, or anything requiring more circulation, seems to be worth trying. My experience is that my “pushing” blood is the most effective and easiest way.

Linda has tried this when not getting hit. It was something I never considered but it makes some sense. I try it now and then

just to make sure I can still do it. It’s easy when I don’t have to fight the pain at the same time. The other thing is you cannot let up. It will not work if you give up before the attack ends. It will never work if you stop. My attacks would average about 20 minutes, sometimes a bit longer. If I used the technique I could often halve them, sometimes knock them out in 5 or 10 minutes and now and then kill them in less than a minute. That was what I lived for. I never stopped trying as I knew it was possible and it worked for me, 7 or 8 times out of 10...it never occurred to me not to try. I would have to regroup a bit during this as it’s not possible to have that much concentration. It is possible not to completely slack off, however. I never gave up. When it works, it’s sudden. It seems to drain away in a few seconds. My suggestion is to not let up immediately when the pain goes. Wait a minute. It never comes back until the next attack though. Dr. Wright said that young people have the best luck because of better circulation. Maybe he was right. This is the best I can do for now but keep trying. The damn thing does work.

For me, this is something that I got almost immediately. I used it only a few hours later in a restaurant and it worked in less than 10 minutes the first time. What a thing it was. CH was still a horror but its grip on me was greatly lessened. I had a fighting chance, and I usually won the battle.

Good luck,

Charlie