Clusterheadaches.com Message Board


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

        New Message Board Archives >> Jan-Mar 2003 >> Seventeen years old and a four-year sufferer.
        
(Message started by: MidnightObsidian on Feb 10^th, 2003, 4:11am)

Title: Seventeen years old and a four-year sufferer.
Post by MidnightObsidian on Feb 10^th, 2003, 4:11am

Before I begin, let me say that I am very, very grateful to the webmasters for creating a site for sufferers of cluster headaches.

Ever since I was eight, I've had problems with severe headaches. Chronic sinusitis, tension headaches, mild migraines, a seemingly-constant case of strep throat, the works. One by one, the problems were eliminated through medication, and the medications were subsequently eliminated. Around the time that I turned fourteen, I started to get a low, constant headache behind my right eye that would flare up at least once a day for months at a time, and then take a month or two off (while maintaining the constant pain). Unfortunately, at that point in time I hadn't done any personal investigation of the matter, so when my doctor told me that it was just tension headaches caused by the mild depression associated with adolescence, I assumed that he was correct and followed through with his treatment.

Since then, I've been on most everything for these headaches... elavil, celexa, neurontin, trazodone, hydrocodone, diphenhydramine, zipraisadone, kava kava, tons of acetaminophen, etc. Nothing has really helped. Two things have come close (Neurontin and no less than 3/4 of a bottle of NyQuil), and neither of them did what I really wanted the medicine to do. The NyQuil was obviously absolutely horrible for mebecause each dose had 1000mg of acetaminophen in it, and I was taking around six doses at once. (The absolute maximum you can take in a 24-hour period before risking liver damage is 4000mg.) For all I know, it just made it so that I could sleep, and having uninterrupted and (what seemed to be) wholesome sleep made me feel much better than before. It'd wear off far too quickly, however, and I'd be back to where I started (except I would have a green tongue). The Neurontin helped get rid of my chronic headaches when I started taking it for about two weeks, and then died off. My neurologist upped the dose several times, and the pattern would continue. When I was up to something like 1800mg per day, he decided that I was just better off without it, and I had to agree.

I'm currently seventeen years old, and to this day not a single doctor had suggested that my problems may be a result of cluster headaches. I hadn't even heard of cluster headaches until about a year ago when my friend's grandmother suggested that I look into them. Whenever I brought them up to my doctor, they discounted the fact because either I didn't seem severe enough, or because of my age. Of course, none of them had ever seen me in the middle of an attack, and I've learned to deal with my constant headache to the point where there really are no outward symptoms. During the past two months, I've been doing some serious research on cluster headaches, and virtually everything that I've found points to exactly what I've been experiencing.

I've read through a pretty large portion of the posts on these forums (especially the medication forum), and have found a number of very promising remedies. I have an appointment with my doctor approaching quickly, and I think that I'm going to ask him for a prescription for some kind of a calcium-channel blocker. If he's opposed to those for whatever reason, then I'll ask for some of the Imitrex inhalers. From what I've read, they're just as effective as the injections, but the onset is just slower. After having these headaches for so long with no relief, I can deal with five more minutes of pain to avoid the needles (they're not a phobia per se, but more of something that I'd just like to avoid if it's at all possible. Other than that, I've noticed that almost everyone here who has tried the psilocybin/psilocilin therapy has had very positive results from it, and I've already taken steps to obtain some psilocybes of my own.

I'm sorry that I've been rambling; it's about 2AM on a Sunday night, and I've been wasting time that I couldn't use for sleep, while periodically taking breaks to beat my head with my biology textbook. (I've been at about a seven on the Kip scale this entire time.)

If anyone has any suggestions of comments to make, I'd really appreciate it if you'd post them; I'd be extremely thankful for any input at this point in time.

Thanks for putting up with this rant.

--Edward Hallman

Title: Re: Seventeen years old and a four-year sufferer.
Post by suzy617 on Feb 10^th, 2003, 6:45am

Hi Edward and welcome to the board.

I dont have much to offer you except that you read all you can in here and print out what you can to bring to a Neuro. Have you taken the cluster quiz? How did you rank?

So sorry you are so young and in pain. Please stick around and let us know how your doing.

suzy

Title: Re: Seventeen years old and a four-year sufferer.
Post by Karla on Feb 10^th, 2003, 7:58am

I suffer from cluster headaches chronically. My 17 year old son suffer from them eposodically. It is possible at your age to get ch! If your dr. wont listen to you or any of the literature you take in to him you will need to find another more knowlegeable and open minded dr. Show your parents this website and the quiz. Explain to them that this is you and how you feel. You need to get your parents behind you and believing in this so they can push the dr. also. Another good reason for showing your parents this website is so that they can better understand what you are feeling and how to support you through your pain.

Title: Re: Seventeen years old and a four-year sufferer.
Post by catlind on Feb 10^th, 2003, 8:37am

Hi there Edward. Love your handle :) You are not alone. Sounds like you are doing the right thing and checking into all the info here alread. Read read and read some more. Print out reams of paper and show them to your doctor and demand an appt with a neurologist. The 'gold standard' according to my neuro is verapamil, oxygen (non rebreather mask 8-12 lpm) and triptans or ergot compounds.

You aren't alone. We have at least one other member here that I know of, that is also a teen sufferer. Cassie, aka NightOwl is 16 and suffers terribly. Perhaps you and her could talk and find out some tips to help each other through school etc.

Welcome aboard.

Cat

Title: Re: Seventeen years old and a four-year sufferer.
Post by Roxy on Feb 10^th, 2003, 10:29am

Hi Edward, and welcome.

Sounds like you've already been doing the best thing you can do...research. Do what Cat says, and print everything you need and take it to the doc with you. Hope you get some good results. The 02 will be a great help to you.

Take care, and let us know.

Tracey

Title: Re: Seventeen years old and a four-year sufferer.
Post by ZAIRA on Feb 10^th, 2003, 3:23pm

Hi, Welcome home! :D ;)

You don’t disturb at all, Edward.

Reading your story I had a flash back of about 10 yr. when I had the first “eye-aches” (I called then so, really it was CH). After having be diagnosed by Doctors as an “imaginary ill”, an intelligent Doctor told to my parents that I had CH, and it started the difficult living with CH... :'( >:(

My suggestion is to try O2, for me it works and sometimes I don’t use Imitrex. This is to stop the attacks. Verapamil is also very helpful (talk to your Doctor).

Let’s know about the appaintement with your doctor and remain with us!

All the best for you.

Zaira, Italy :-*

P.S. I hope you understand what I meant because I practice English only with cluster/supporters friend!

Title: Re: Seventeen years old and a four-year sufferer.
Post by Mark C on Feb 11^th, 2003, 7:44am

Welcome aboard Edward,
Sorry you need us but glad you are here. I have attached a cool HA diary that can help track the beast. Knowledge is power. Good Luck,
Mark

http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf

Title: Re: Seventeen years old and a four-year sufferer.
Post by MidnightObsidian on Feb 11^th, 2003, 9:50pm

Thank you all for your support, I honestly appreciate it. This certainly is a great community, and I'm happy that I found it.

My doctor was out of town this week, but I have an appointment for a week from today, the 18th of February. He's a very nice guy, and he'll most likely ask me what I want to do. As several people have reccomended, I'm going to be as invasive as possible as soon as possible. From what I've read, the calcium-channel blockers would be a really good place to start as far as preventatives go, so I'm going to try to get some Verapamil. A couple people have reccomended that I get an O2 tank and a non-rebreathing mask to abort headaches when I can't deal with them, so I'll look into getting one of those, as well. I read a thread in the medication forum where Bob Johnson reccomended that someone look into Olanzapine (Zyprexa), so I might ask about that, as well.

Other than that, I have $30 worth of psilocybes coming to me one of these days, so I'm going to try therapy with them as soon as possible. A friend of mine offered to get them for me through a dealer that she knows, so I should have them soon. Of course, I did give her the money three weeks ago, and I have nothing to show for it yet, so I don't really know what "soon" means. That's a perfect example of my luck; I live in the Pacific Northwest for christ's sake, and it takes me four weeks to get some shrooms.

::sigh:: It's just frusterating to know that relief (however partial it may be) is so close, yet so far a the same time. I hate the way that I see 1:00PM and 9:00PM roll around and I know that an attack is on its way, and I REALLY hate waking up at 3:00AM and realizing what I'm in for right before the pain registers.

Oh well. Maybe something will work out for me and this will subside for a while.

(By the way, if you haven't done so yet, you should check out my rant on the mechanics of psilocybin/psilocilin and dextromethorphan, and their theoretical interactions with cluster headaches. (http://www.ocbasketball.com/host/files/dxm.htm))

Title: Re: Seventeen years old and a four-year sufferer.
Post by Ted on Feb 11^th, 2003, 10:14pm

Hi Edward. You're pretty well-spoken/written for a 17 year old. And well researched too. I just checked out your writings from the link you provided. I guess the educational system in this country's better than we thought. LOL.
Does the Oregon City high school girl's basketball team know your posting about shrooms on their website?

Title: Re: Seventeen years old and a four-year sufferer.
Post by cootie on Feb 11^th, 2003, 10:26pm

hello Edward .......hope things are goin ok for ya.....Pam

Title: Re: Seventeen years old and a four-year sufferer.
Post by west17m on Feb 11^th, 2003, 10:37pm

Edward, I'd like to say welcome. I'll ditto everyone else and then expand on your looking into Ca²⁺ blockers. I did the verapamil thing at 200mg for a whole year with no help. However, I realized at the beginning of my second cycle that most CH scripts for verapamil were 500-1000mg; consequently, I moved myself to 600mg and it stopped my second cycle cold in three days.

I'm not saying what happened for me would work for you, but you're on the right track reading as much as you can. Here's my only other piece of advice, make sure when you get a script that the dosage will actually last you. Many doctors are used to prescribing for migraines which might only occur weekly. I got a script of the immitrex pills and found about six ... and ONE refill. Needless to say, that wasn't going to do it.

I wish you the best of luck in battling the beast. Keep us posted on what's working for you.

-- Tag

Title: Re: Seventeen years old and a four-year sufferer.
Post by MidnightObsidian on Feb 11^th, 2003, 10:37pm

on 02/11/03 at 22:14:54, Ted wrote:

Oh god... lol... I'm in the middle of an attack and that post just made me start laughing out loud.

The American education system is absolutely horrible, and the Oregonian education system is only better than states like Arkansas and Alabama (and yes, I am basing that statement on actual statistics). Last year, I just got fed up with it all and simply stopped doing all of my work (except tests, all of which I aced).

The public schools are pretty bad anywhere in this country, and west coast schools are absolutely pathetic compared to east coast schools. I moved from Fredericksburg, Virginia to Oregon City, Oregon about two years ago, and I was disgusted with the state of their educational system. I'm in the most advanced classes available, and I'm still getting nothing but repeat information.

Then again, I've always been acedemically higher than the great majority of people my age. I took the SATs during my sophomore year and scored a 1530.

I suppose that there are benefits to having a horrible structured educational system, though; it allows me to study things that are actually important to me.

Bah. I'm ranting again. Thank you for the compliment.

PS: I perform maintenence to the webpage of my high school's basketball team, and have taken the liberty to mirror and store all sorts of files there. It's nice when you're the only technologically-knowledgable person at your workplace.

Title: Re: Seventeen years old and a four-year sufferer.
Post by Marc on Feb 11^th, 2003, 11:03pm

Edward,

Following your link, I spent some time reading your "old" diary - interesting evolution. Thank you for sharing it.

Keep doing the research and taking responsibility for finding what works for you.

Marc

Title: Re: Seventeen years old and a four-year sufferer.
Post by MidnightObsidian on Feb 11^th, 2003, 11:19pm

on 02/11/03 at 23:03:57, Marc wrote:

Following your link, I spent some time reading your "old" diary - interesting evolution. Thank you for sharing it.

Haha... god... I forgot about that thing. It's pretty cool (as well as extremely embarassing) to think about how much I've changed in the three years since I started it.

On a completely different note, I don't know what I'd do without my AP Biology II textbook. I haven't found anything better for beating my own head in yet!

Title: Re: Seventeen years old and a four-year sufferer.
Post by Charlie on Feb 13^th, 2003, 5:03am

Hi Edward and a late welcome to the fold. Lots of good stuff here and I hope you stick around. I think if you do, will will find ways to make this a horror little more bearable. It happens all the time.

Here is Dr. Wright's little technique:

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 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. Often, 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 but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on 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. Don’t let up until you are sure the attack has ended.

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