CH: The Devil's Disorder

[proseros]

I won't get into a long winded testimony as to what this is about. It pretty much goes like this...


You:"Hey! What was THAT!"
CH :"Oh I'm just here to let you know you're not going to work today. In fact-you're not doing anything today.
You:"Pfft! Wutever.Yes, I am. I'm about to leave now.
CH :"No. You're NOT!"
You:"Okay, okay.I'm not.
CH :"And don't contradict me again."

And that's pretty much the way it goes.
It's been that way for me now 19 years.
If you know anyone with this condition-or anything like it-give them a hug.

I post this so others will might become educated.
It's not just a "headache".

http://www.clusterheadaches.com/traits.html

[HighEnergy]

Oh Proseros, I do understand. I had headaches my entire life (They are some of my earliest memories of childhood.) until I had my youngest daughter. That's when my spine became quasi-functional. I started having accupuncture and then I met my massage therapist and he changed my life and is the reason I can still walk. Anyway, the headaches stopped when I started these treatments. It was not the point of the treatments, but it's a WONDERFUL side effect. My therapist works on keeping my pelvis aligned and that works up my spine. He also does a lot of myofascial release with me. If you can, try it. It's worth it.

[csrakate]

Oh Proseros, I do understand. I had headaches my entire life (They are some of my earliest memories of childhood.) until I had my youngest daughter. That's when my spine became quasi-functional. I started having accupuncture and then I met my massage therapist and he changed my life and is the reason I can still walk. Anyway, the headaches stopped when I started these treatments. It was not the point of the treatments, but it's a WONDERFUL side effect. My therapist works on keeping my pelvis aligned and that works up my spine. He also does a lot of myofascial release with me. If you can, try it. It's worth it.

I never saw a connection between cluster headaches ceasing once the individual started massage therapy until your post. My husband suffered for years with cluster headaches....excruciating, debilitating pain that he used every known remedy to cure....Imitrex, oxygen....but nothing would work. Since then he has begun regular massage therapy that he started for other reasons and, knock on wood, has not suffered from an attack since then.

Perhaps you should try this route, Proseros....it's worth a shot....Believe me...I know your pain and how you suffer. I wish you well!

Hugs,
Kate

[shameless agitator]

Oh man, I feel ya. Several years ago I wen through a period where I got one every day for a little over a month. Since then I've only had four or five in the last 12 years.

[12voltman59]

I used to suffer from very bad sinuses---I finally had to undergo a major sinus surgery and in that time before the surgery--would get these sinus headaches that were debilitating---they were every bit as bad as any migraine--and they symptoms were along similar lines except the pain centered in the area behind an around my nose and forehead.

I would get them and I could not do anything but suffer them---thank God the surgery helped to not only relieve that pain--but other things that a set of badly infected and polyp filled sinuses caused.

[nothings5d]

I never really looked into Cluster Headaches before. That sounds more like my mom's headaches than Migraines do, and I might have an early form of it because the symptoms of my Migraines vary greatly sometimes and when I get the nausea-less Migraines they have a tendency to be more painful and occur more often. Can't be sure though, might have to mention that to my doctor.

[shameless agitator]

I never really looked into Cluster Headaches before. That sounds more like my mom's headaches than Migraines do, and I might have an early form of it because the symptoms of my Migraines vary greatly sometimes and when I get the nausea-less Migraines they have a tendency to be more painful and occur more often. Can't be sure though, might have to mention that to my doctor.You may be getting them, but I would be very surprised if your mom was. Cluster headaches are incrediblyrare in women. We don't know why, but women just don't seem to get them.

[proseros]

When my CH began in 1989, there was no general knowledge in the medical community about clusterheadache. It's rarity played more like an urban legend, worse, some foul (if you'll pardon the term used here) reverse-cheuvanistic myth; For one thing, young men are not supposed to have headaches. And if they did, who would know that they were as bad or how to treat that kind of real pain? I at times have had to "fake" any other kind of distress just to convince people I wasn't lying on the sidewalk waiting for change to be thrown at me.

In October of 1991 I visited the local ER 10 times before I was officially diagnosed, and the neurologist that did had to pull an old volume of his shelf to confirm that the symptoms couldn't match anything else that could've been the problem. By then I had been treated by ENT for sinusitis with a three inch pipe in my left nostril that blasted antihystimine into my face (yeah you bet that did th trick didn't it?), had several teeth pulled, and was 10 minutes away from having my lacrimal glands cut out by an incompetent eye doctor who was willing to perform an entirely unnecessary and unheard of procedure as long as I was complaining about it-before a head surgeon stepped in and stopped it. THANK GOD THAT DIDN'T HAPPEN. If it had, today I'd have damaged or non-existent tear ducts in my left eye, which is probably the thing CH patients rely on MOST-To be able to produce enough tears to cool the eye because it becomes so HOT. It feels like someone it tapping the back of your eye with a blowtorch.

Of course who could imagine what that might feel like? Well-All I can say is that it feels exactly like what it sounds like.

Well of course this diligently brilliant neurologist only had as much information as was available at the time what to do about my condition, and needless to say I became a walking chemistry set. Notriplaline, Calan, Prednisone, Sansert, Vaconase, Beconase, Fiorocet, Ultracet, Percocet, Vicodin, Erythromycin (sic). I took whatever I thought would stop the pain and either wound up worse, of half crazy. Sansert is some kind of cousin to LSD;I don't know what Nortriptaline is, but as far as I'm concerned, according to someone I knew who would know, you may as well swallow a few teaspoons of Clorox.

"I tried to kill myself. I drank bleach."
"So what's that like?"
"Green."

The same year I received a CAT scan which detected nothng unusual besides some edema somewhere in my brain (And there be careful you are not misdiagnosed with Encephalitis-Oh yes, I was offered a spinal tap. "No Thank You." As a matter of fact- "Fuck you, I'm outta here!").

I remember chewing about 4000mgs of Tylenol as if it were bubblegum one night.

Today if you into an ER and say "clusterheadache" you are literally treated as though you were medical royalty, insurance or not. You even get a free psychiatric evaluation the third time around [Just to be sure you are not considering killing yourself since after all, they are not called "suicideheadaches" for nothing], and a consolation walk-in ticket, no questions asked if the attacks persist. I believe this is partly-if not very much-due to the valiant public awareness campaigns heralded by the above linked site, and I am certain is much to do with the increased recognition, advertisement, and approval of imitrex for migraine-and other kinds of-headaches during the mid 1990's.

Between Monday afternoon and Tuesday morning this week I've had 6 attacks, a pattern that is very close to what it was when this all started, one attack every four hours. The longest bought I've had lasted a full 8 days, in November 1996. So far I've had 2 pain free days and don't particularly expect to (another way of saying "I hope I don't" ) have any more severe attacks after this long without anything.

The relapse of the condition ocurred on December 27, two days after news of my sister's death.

I haven't decided yet to tear up my latest prescriptions, which include $900 worth of
Imitrex, at $25 a dose.

[shameless agitator]

Damn dude, that really sucks. Hang on to the Imitrex at least. Triple doses seem to work pretty well. Yes, I did get approval from a neurologist to do that, though I'll admit I started doing it before I asked him about it.

[nothings5d]

The way you guys are describing the pain I don't think I've had anything nearly that bad. Though I do have an incredibly high tolerance for pain. All I take for my Migraines are two naproxen-sodium a.k.a. Aleve, the generic over the counter stuff at 220mg per pill. That reduces my worst Migraine pain and other symptoms to a point where I can stand being in an 80 bulb florescent lit classroom and still be able to function normally. But still, the way you guys are describing the pain from Cluster Headaches sounds like I wouldn't be able to withstand the pain below visible outer symptoms even with pain killers.

My mom however, when she gets what she calls Migraines they last for days or even weeks and cause her more pain than she can stand, and I know she also has a very high pain tolerance. For a while 2 or 3 times a month my dad practically had to carry her to the car to get her to the emergency room where she would get pain killers that were so strong she would always end up unconscious from them. And she can take this one muscle relaxant that knocks me out for 12 hours and still be able to drive. Thinking about it now I don't see how she survived like that, the looks of pain on her face were so bad sometimes that I thought she looked like she'd rather be dead than experience that kind of pain.