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        New Message Board Archives >> Jan-Mar 2003 >> Chronics, I need help.  I think I'm misdiagnosed.
        
(Message started by: Phia on Feb 19^th, 2003, 2:46am)

Title: Chronics, I need help. I think I'm misdiagnosed.
Post by Phia on Feb 19^th, 2003, 2:46am

I've had headaches for as long as I can remember. But it wasn't until 4 years ago (when my headache wouldn't go away) that I sought medical help.

After various tests (including cat scans, an MRI, and a follow-up MRA), they discovered a small, but inoperable aneurysm on one side and a collapsed blood vessal on the other.

One neurologist attributed this endless headache to the blood flow (or lack of) in my brain. The other said it had nothing to do with the aneurism. The more I read, the more I believe that this is a cluster headache.

It feels like the temporary "brain freeze" you get when you eat ice cream too fast - only it lasts for hours on end. It's in my right temple only. Although the pain will sometimes extend as far as my jaw. My right eye droops and my nose runs. My vision get blurry.

I'm super-sensitive to sound, but have no trouble with light or nausea. If I lay down, it intensifies. I have no trouble eating, and I'm always thirsty.

During the "good" times, my h/a hovers around a two (on a scale of 1 - 10). But without any warning, it can shoot up to a 7 or 8 and stay there for hours. I had three days last year when I had no headache at all.

The biggest problem is what I call the bruising. My right temple feels like it had been beaten with a bat and it's very tender to the touch - so heat or ice is out of the question.

Does this sound familiar to anyone?

If so, please tell me what you're doing to get through this. My primary physician has pretty much given up on me. He sent me to a pain specialist who has me on morphine and muscle relaxants. But they only take the edge off. We tried a higher dosage, but it only made me sick.

Am I correct in assuming these are chronic clusters?

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by suzy617 on Feb 19^th, 2003, 2:58am

Hi Phia, sounds alot like CH to me. Have you taken the quiz in here? Have you asked your Dr. to send you to a Neuro? There may be better meds for you to take such as imitrex and 02 which many here have benefited from.

Good luck to you,

suzy

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by Phia on Feb 19^th, 2003, 3:14am

Thanks for reading my incredibly long message and replying. It feels so good to talk to someone who understands.

I took a quiz on a link from this site and it said that it couldnt be determined from the answers I gave.

Ive been to two neuros and a team of neurosurgeons. But they weren't interested in my headaches as much as trying to coil the aneurysm. They acted like the h/a was no big deal.

So far, it's cost me my job and my youth ministry. Luckily, my husband and son have been incredibly supportive. But they feel so helpless - and I feel sad that I can't be stronger for them. I used to have a high tolerence for pain - now I'm not so sure anymore.

We tried Imitrex with no results. The oxygen works if I can get to it before the h/a gets too bad (I have an H tank in my den).

Do you have the same symptoms? How do you cope?

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by Charlie on Feb 19^th, 2003, 4:22am

Welcome aboard and much of what I read in your post sounds like clusters. For me, one of the most reliable tests is: Do they wake you out of a cold sleep? They do most of us and once awake, you cannot sit still or lie down for comfort. You cannot sleep away a cluster.

Stick around and tell us more. You'll find lots of ideas here. You'll also find that things like Morphine are rarely used for CH.

By the way, my forehead seemed a little sensitive when I was in a cycle. I also wanted to sit in the dark in dead silence. It's a common thing with many of us

Charlie

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by Phia on Feb 19^th, 2003, 6:52am

Hi Charlie.

I'm not impressed with the ms contin (morphine sulphate), it's not much better than the oxycontin they prescribed last year. All oxycontin did was make me nervous and mean-tempered. It barely touched the pain.

The headache's there when I wake up, but I don't think that's what wakes me. It's no more intense than when I fell asleep.

I don't normally go to sleep until I'm totally exhausted. I find that when I lay down, the headache gets much worse. So by the time I do get some sleep, nothing can wake me for at least 3 hours.

The only thing that really works is O2 (if i get to it in time) and that suggestion came from an article on the net.

I'm lucky to have insurance that covers 40-80% depending on the treatment category. In the last four years, I've been through chiropractics, neurology, acupuncture, acupressure, alergy tests, dental, optical, biorythm, occpational therapy (that was a total waste of time) and even an attempt at a surgical proceedure to coil an aneurism - all were unsuccessful. Now I'm with a "pain specialist". If I had to pay the full cost of all those treatments, we'd be in a soup line by now! I've run out of options.

Thanks for letting me complain. I don't talk about it because I don't want to worry my family any more than I have already. They're so understanding and supportive, but I can see the frustration in their eyes because they feel helpless. I wish I could convince them that their love is the best medicine I've gotten thus far.

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by das on Feb 19^th, 2003, 9:00am

My best advice would be to post asking for someone to refer you to a qualified neuro in your area. Until you find the right neuro, one who REALLY knows what he or she is talking about, you won't get much help.

Good Luck.

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by brain_cramps on Feb 19^th, 2003, 9:31am

on 02/19/03 at 06:52:10, Phia wrote:

The headache's there when I wake up, but I don't think that's what wakes me. It's no more intense than when I fell asleep.

I'm not saying that you DON'T have clusters, but, to me, the feeling of being woken up by a cluster is UNMISTAKABLE! It really REDEFINES pain.

Stick around long enough to hear what others have to say. Hopefully, you'll end up being 'just a visitor'.

PFDAN,
Grant

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by hdbngr on Feb 20^th, 2003, 12:36pm

Phia:

Do you have a recliner you can try to sleep sitting up? Sometimes that takes the pressure off of your head and you can get more sleep. A Doctor once recommended a diuretic, because swelling sometimes causes head pain particularly if laying down makes it worse. You can take this daily as a preventative. It might help and is relatively inexpensive.

Good luck!

Title: allow me
Post by rumplestiltskin on Feb 20^th, 2003, 6:53pm

i don't belief i've ever heard of diuretics as preventatives for CH. Nope...never did till now.
Butt i've only been here 3 1/2 years.

Don't they get rid of water?

what about water water water on them left links?

love
den

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by Phia on Feb 20^th, 2003, 7:14pm

Hi Das!

I just got the name of a new nuero today. He's in Bangor Maine and his name is Rosario - I don't suppose anyone has heard the name? Anyway, thanks for the advice. I'll be seeing him in March.

Brain,

From your lips to God's ears. But even if I turn out to be just a visitor, I'm better off to have known there sre people who really support and care about each other. You are gifted with the ability to reach out to strangers with compassion and strength. Thank you for sharing that gift.

Hdbngr,

I don't have a recliner, but i do sleep in an oversized chair or on a small mountain of pillows on the couch.
I'll talk to my dr about the diuretic. Did it work for you?

Pax et bonum,
Phia

Title: Re: allow me
Post by jonny on Feb 20^th, 2003, 7:48pm

on 02/20/03 at 18:53:01, rumplestiltskin wrote:

Seems to me you was dissed, Den

Hmmmmmmm!!!

........................................jonny

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by catlind on Feb 20^th, 2003, 7:59pm

Actually, the more water you drink, the less water the body retains. Your body retains fluids when it thinks it isn't going to get enough, if you drink lots of water on a regular basis, you will not retain the fluid because your body knows it's going to get it. So the diuretic isn't all that far fetched in that respect.

First time I've heard of it though, and I believe, (check to be sure though - I'm too lazy right now) that diuretics and calcium channel blockers (verapamil) are a no no together.

Good that you are checking with your doc Phia. I hope you are a visitor, and you may want to have your sed rates tested, what you describe sounds very similar to temporal arteritis. If you are a family member, welcome to the fold, and you'll find lots of info here.

Cat

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by oringkid on Feb 20^th, 2003, 9:32pm

Diuretics do lower blood pressure, so I would not use them with verapamil without a doctors advice.

Sherry

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by cootie on Feb 20^th, 2003, 10:04pm

Jus wanted to say hi Phia and good luck to you with all this pain goin on.......Pam

Title: well hidee hoe
Post by rumplestiltskin on Feb 20^th, 2003, 11:59pm

Diuretics

If it's new info for CH and it's good...that's good.

If it's new info for CH an it's BS...that's bad.

If it's new info for CH an the jury's still out...then...as always.... we'll just need to hear from those who have tried it and more from the resident smart scientific folks around here.

Maybe all our beer and coffee guzzlin is our body's way of helpin us go with the flow.

Piddlin the sunshine
den

PS: I miss Gary G. and the old board's setup that made runnin a seperate thread off a post easier to follow.

Title: Re: Chronics, I need help. I think I'm misdiagnos
Post by hdbngr on Feb 21^st, 2003, 9:31am

It was prescribed in 1999 by the Houston Headache Clinic for those patients who had more pain when they laid down, and/or whose headaches were worse first thing when they woke up. The theory: laying on your back placed pressure on your head and brain stem. Since a large part of the brain is water, the diuretic actually shrinks the size of the brain (does not adversly affect intelligence, please resist, Jonny!) thereby reducing pressure inside the skull, and any that have that "head is going to explode" feeling.

There were patients there that said it did help. These patients had the cluster migraine diagnosis, rather than straight CH. Since it is prescription strength, I'm sure the Docs will take into consideration any existing meds before prescribing.