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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I'm glad I found you!
        
(Message started by: peep_nugget on Mar 12^th, 2006, 9:32pm)

Title: I'm glad I found you!
Post by peep_nugget on Mar 12^th, 2006, 9:32pm

Hi,

My name is Leanne, I'm 32 years old and have had cluster head aches sine 1992.

Right now I'm heading into another episode of headaches and wondering how I'm going to hold on to my job through this bout.

In January 2002 I had a breakdown, and was in a terribly bad way... every year I worry that I'm heading down that same road.

Like many, if not all of you, I've been diagnosed with everything from sinus infections (i was taking antihistamines for several months before I figured out they werent working) to being accused of hypochondria.

Today I'm home from work, as my head aches increase in intensity and duration. Normally, I have approximately two months of "build up" where I experience small, barely noticable pain. This eventually leads to where I am today - experiencing one, on the verge of two per day, lasting approximately 5 minutes up to a few hours. This will build until I will experience 3 maybe 4 headaches per day, lasting a few hours each.

Today I'm sore from laying in bed, with a cloth over my eyes and an ice pack on the left portion of my face. I feel as though I'm on the verge of tears every time I think about what lies ahead, and that there is nothing to be done except wait it out.

One day, I'll wake up, and suddenly realize that I haven't had a head ache in several days. They will disappear suddenly and often without my noticing.

As all of you understand, this is not only phyiscally taxing, but also mentally fatiguing. Luckily, my spouse is incredibly supportive.

Sometimes I feel guilty - mood swings, incredible rage/frusteration, the pain and lethargy and to top it all off, the lack of information and treatment options.

I have filled out the several surveys on the site here, and hopefully some of my experience will help others along the line. To that end, I'm so glad to see that there are so many others for also for whom treatments fail to alleviate the pain.

I've read other's descriptions of their "beast" and have often thought of my own head aches as a giant worm. It attempts to crawl its way up my neck, through my eye and into the top of my skull. Of course I have the typical eye/nose leakage; eyes turn red; face turns red and I do have a sensitivity to everything - including someone bothering me with questions!

Irritability is a huge factor, when I'm experiencing a head ache, I simply do not want to be bothered. Nothing seems to work, and simply crawling into bed, putting my eye mask on, and holding an ice pack to my head seems to be the most comforting. I know that the ice pack probably does not help, but I do get some placebo comfort from simply knowing that it is there.

I've read that a number of other individuals experience physical aggitation - pacing, jiggling legs when recumbent, rubbing feet together, making fists, "banging head". My own little quirks include foot/leg jiggling and making a fist. Although I have never banged my head (on purpose) during this time, I can certainly understand why that may be an attractive idea.

Something else that I've noticed, but not read too much about is a feeling of being "cold" and shivering. I will often have a heating pad on my back, but still feel freezing cold - my feet get chilly, my arms feel chilled and it is all I do to curl up and try to stay warm.

I am going to read through the introductions of others, and I welcome any ideas/thoughts/comments that can help me get through this... I have come across that rather well written letter by a person involved with CHA and would like to give it to my co-workers. Although any information is good information, I worry that my employer may see that as an invitation into my personal medical health...

However, the option of being fired is also quite daunting.

We shall see.

In any regard, thank you to all who have been instrumental in the development of this site, it has already been a tremendous resource to me. I welcome your comments and suggestions.

-Leanne

Title: Re: I'm glad I found you!
Post by 5-string on Mar 12^th, 2006, 11:26pm

Hey Leanne,
My advise is to read all you can here. When I was finally diagnosed(about 2 years after they started) I found this sight. My worst cycle so far kept me out of work for 2 months. I printed out all kinds of info from this sight and showed it my employer. That's all I could do. Everybody here has found a slightly different combo of things to help with this. Verapamil (120mg,2x per day) Imetrex inhaler helps me.

Take care...
..Mark.

Title: Re: I'm glad I found you!
Post by marlinsfan on Mar 13^th, 2006, 9:09am

Hi Leanne, sorry you're hurting :-[

You didn't mention what treatments you take, so here's a good doc for your to read and learn, and take to your neuro to ensure you get ont he right treatment:

http://www.brightok.net/~mnjday/chtherapy.pdf

Hang in there...... you're not alone anymore.

Title: Re: I'm glad I found you!
Post by Richr8 on Mar 13^th, 2006, 5:33pm

...me too!

on 03/12/06 at 21:32:21, peep_nugget wrote:

have often thought of my own head aches as a giant worm. It attempts to crawl its way up my neck, through my eye and into the top of my skull.
That's how I describe mine, except in my description the worm is actually a strand of razor wire.

I have come across that rather well written letter by a person involved with CHA and would like to give it to my co-workers. Although any information is good information, I worry that my employer may see that as an invitation into my personal medical health...However, the option of being fired is also quite daunting. No doubt. I provided a copy of that letter to my employer and he has been nothing but cooperative and understanding since that time. It's worth a shot.

pf wishes.

Title: Re: I'm glad I found you!
Post by peep_nugget on Mar 13^th, 2006, 5:48pm

re-reading my original post, i realize that i made very little sense at times. my apologies.

treatments i have experienced include:

sumatriptans (imitrex, et al) - i've tried pill, nasal sprays and injections. none of which worked.

0xygen - works for a while, however as soon as the non-rebreather is removed, the headaches return almost instantly.

Zolmitriptan (Zomig) - head aches continued to break through.

Verapamil - had breakthroughs.

Narcotics - codeine and family - knock me out, to be sure, but do nothing to prevent/kill the head ache.

I'm back to using a very small dosage of Paxil (10mg) in conjunction with Wellbutrin (100mg - the smallest dose). That brought me out of my tailspin in 2002, but i just got the new prescription today, so it might be a while before I see results.

The use of anti-depressants in 2002 was key for me. I'm not sure if it was because i was in such bad shape to begin with (the HAs had really taken their toll mentally and emotionally) or if the drugs had a direct effect on the "cause" of the HAs to begin with.

Either way, I had success with them in 2002, although limited success with subsequent attacks.

All I can do is wait and see.

Thanks for your encouragement, guys!

-leanne

Title: Re: I'm glad I found you!
Post by Charlotte on Mar 13^th, 2006, 6:47pm

Welcome.

Good luck keeping the job. That is also my struggle, and it's better to have one. I just made it through a cycle, and the anger during the last stage is something I have to watch out for at work - I don't want to make someone else pay for my pain.

I'm sorry you had to look for us, but I'm glad you found us.

Charlotte