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        Cluster Headache Help and Support >> Cluster Headache Specific >> brand new here
        
(Message started by: di on Apr 26^th, 2006, 1:16pm)

Title: brand new here
Post by di on Apr 26^th, 2006, 1:16pm

Hello, everyone,

I am seeking information on what may be going on with my headaches. For about 5 years now I have been struggling with daily headaches. They started when I began the menopausal transition, and for a while I thought they were of the migraine-type. Since I learned that many women have those kinds of headaches at that time of life, I kept waiting for mine to end. They never did but they became different. While they had been in the upper forehead area, they began being anywhere in the left side of my head. They could be in the mid-back all the way to the forehead. Often, right behind my left ear would hurt. The pain would vary...it could just be tingly, kind of a pins-and-needles or it could be a boring, deep pain. Often, my left ear would be red...sometimes with pain and sometimes without. The headaches could come on suddenly, too. That has been very hard because I have had to cancel many social times with family and friends, and I am only able to work part-time. My getting this job was contingent on my boss' understanding about the unpredictableness of these headaches, and he has been great about it.

I finally went to a neurologist 9/04. He wasn't very thorough and quickly diagnosed them as migraines and prescribed Pamelor daily and Fioricet for severe ones. He also said that the red ear was not headache-related. (I have learned since that he was wrong.) Ayway, the Pamelor was not very effective, and he never explained why I should only use the Fioricet for severe HAs so I was afraid to use it at all.

Fast-forward to now...I saw a new neuro 1/06, and he has been very helpful. He had an MRI and doppler of the arteries in the head done, and both were normal. He said it seems that I have chronic paroxysmal hemicrania, which is in the cluster family, and I also have migraines. The uncontrolled CPH causes migraines for me. So he prescribed Indocin, 75 mg. daily in 3 doses, and after a week on it, my head felt almost normal! The tingly-sensation and red ear were practically gone. This lasted for about a month, but now I am having those sensations pretty regularly. I raised my dosage to 100 mg. daily, but it didn't do much. I still get pretty nasty headaches that put me in bed, and now the part of my head behind my ear often is painful, red, and hot during those.

I see my dr. in two weeks, and I am wondering where we go from here. I obviously need a preventative med that is effective long-term. I have found that I can abort a headache sometime if I take a Fioricet, two Aleve, and a caffeinated drink. This doesn't always work so I also need a more effective abortive. Right now I am living day-in and day-out with the possibility of a headache that will send me to bed. This whole thing has become very discouraging. I am blessed to have a very supportive husband, but it has gotten to be a long road for both of us. He has recently begun having some medical problems that we are also chasing down answers to.

Any help would be appreciated! Thanks!
di

Title: Re: brand new here
Post by Charlotte on Apr 26^th, 2006, 1:40pm

Welcome aboard.

Is it possible for your dr to change the medicine before you see him? I'm not experienced with chp but sometimes our bodies get used to med & a switch will help.

My ch was bad during menopause and perimenopause - my worst.

Good luck, and welcome aboard.

Charlotte

Title: Re: brand new here
Post by di on Apr 26^th, 2006, 2:17pm

Thanks, Charlotte, for your nice welcome.

My dr. is very busy so I don't think he would even call to chat about changing the med, especially in light of the fact that I will see him in two weeks. And I would really prefer to wait so we can talk face-to-face.

A question for you and other cluster sufferers...does your brain seem to vary in its ability to perform? It seems that I either feel very alert and mentally sharp or in a fog? I don't seem to function in the middle so much.

Also, I live in Phoenix. Does anyone know of doctors here who are well-versed on clusters? My dr. is very smart and may be super-knowledgeable. We haven't spent enough time discussing this to know.

di

Title: Re: brand new here
Post by di on Apr 26^th, 2006, 3:16pm

I just wanted to add something else...Indocin is supposed to be a miracle drug for people with CHP. All symptoms should disappear. So I am wondering if I need to try some of the ones that seem to work for some of you with chronic or episodic clusters. That's what I plan to discuss with my dr.

I would love to hear from anyone who has had a similar experience or can just offer advice.

di

Title: Re: brand new here
Post by unsolved1 on Apr 26^th, 2006, 5:49pm

Headaches that send you to bed do NOT sound like cluster headaches. Maybe you need a new doc.

BTW, if we are chronic, we obviously don't have an effective preventative med.

PF Wishes
UNsolved

Title: Re: brand new here
Post by Charlotte on Apr 26^th, 2006, 8:37pm

LOL. It's true some of us who are chronic can't give advice on a preventative.

It's also hard when you have other kinds of headaches added to the mix, and other physical problems.

The nasty headaches that put you in bed, are they a hybrid of the migraines, or chp, or from exhaustion. Do they come at a certain time of day, or after several bad days, or in any other pattern?

Good luck with your husbands health, also.

Charlotte

Title: Re: brand new here
Post by Opus on Apr 28^th, 2006, 2:03pm

on 04/26/06 at 17:49:01, unsolved1 wrote:

...Headaches that send you to bed do NOT sound like cluster headaches. Maybe you need a new doc....

She says she has CPH which triggers migraines, so after the short pain of CPH she would have to go to bed to deal with the migraine.

on 04/26/06 at 13:16:33, di wrote:

... He said it seems that I have chronic paroxysmal hemicrania, which is in the cluster family, and I also have migraines. The uncontrolled CPH causes migraines for me. So he prescribed Indocin, 75 mg. daily in 3 doses, and after a week on it, my head felt almost normal!...

Opus/Paul

Title: Re: brand new here
Post by Charlotte on Apr 28^th, 2006, 6:58pm

Plus during high cycle, I often get daily multiple migraines, and at the end end of high cycle, I often (but not always) get a 3 - 5 day migraine.

Charlotte

Title: Re: brand new here
Post by di on Apr 30^th, 2006, 12:27am

Thank you, Opus, for explaining what I meant. Yes, the ones that send me to bed are migraine in nature.

I have no idea if I have an accurate diagnosis yet. Today I had another headache, and it was mostly behind my left ear. It became hot feeling and a deep, boring pain. At some point my whole outer ear became red. I've been reading about occipital neuralgia and wondering if that is what it is. I guess the tingly, burning sensation may be more indicative of nerve pain, according to my reading. Who knows?! It sure gets to be frustrating to get answers.

I know that the kind of pain I have is not like what true cluster headaches are like. You guys seem to suffer with severe pain. I'm sorry for what all go through.

Thanks for your help.
di