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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Steve75's story
        
(Message started by: Steve75 on Dec 7^th, 2006, 9:27pm)

Title: Steve75's story
Post by Steve75 on Dec 7^th, 2006, 9:27pm

Wow, first of all, let me just tell you how impressive this site is to me. This seems to be an amazing community of really good people, and I think this space will be very therapeutic for me. That said, let me spill my story, it may be a bit of a read, but I need to get it off of my chest.
I was just this past Tuesday, 12/5 identified as most likely suffering from cluster headaches. I have an appointment on 12/18 with a neurologist to confirm, but from everything I've read that I've been able to find on the topic, I have no doubt that this is an accurate diagnosis.
So, about three weeks ago, I started to get the headaches again. Very odd, I thought to myself, to be getting these headaches in the fall. You see, every single year since 1995 I've gotten these headaches in the spring, this is the first time I've EVER gotten them in the fall. When this first started for me, in the mid-90s, and I went to the doctor and explained my symptoms...sudden, VERY painful headaches, accompanied by a running and irritated nose, watery and irritated eye...every doctor I went to told me I was having "spring pollen allergies," gave me a perscription for claritin and sent me on my way. The claritin seems to have made things a little better, but never totally helped (and now I know why!). So, a few weeks ago, when I started to get the headaches again, how very odd it was to me to be getting these in the fall! So, back to the doctor I went (fortunately a different doc this time). This time, the doctor I saw apparently actually knew what she was talking about. I'd never even heard of Cluster Headaches before Tuesday, and when I explained my symptoms to her, she gasped and said, "oh my God, you've got all of the classic symptoms of cluster headaches! I studied about this a little bit in school, but it's such a rare condition, I've never actually had someone come in with them! We need to set you up with neuro." Of course, having never head of this condition before, I thought to myself that this lady is totally full of $h*t, has no clue what she's talking about, and I'm going to have to go find another doctor. When I got home, I started to do some research, found a few sites on the topic, started reading, and realized OMG, THIS IS TOTALLY ME!!!!! I DO HAVE THIS!!! Then I realized that I probably do NOT have spring allergies, I'm getting these clusters every spring! It explains so much of the last 11 years of my life. So, on the one hand, I'm depressed to learn that I will be living with this for the rest of my life, but am also relieved that I now know what's going on. So, what's next? What's the neuro guy going to tell me? What are other folks doing to cope with this? OK, enough for now, have another attack starting. Oh, btw, I saw the pain rating scale on this site....I'm usually between 7-9, and mine last for 1-2 hours. Most of them come when I'm sleeping, and occasionally at random times throughout the day.
:'(

Title: Re: Steve75's story
Post by thebbz on Dec 7^th, 2006, 9:49pm

You are sooooo lucky. You may not know it but your condition often goes misdiagnosed for up to and over 10 years.
Neuro will do a check up, Q and A...then more than likely will order an MRI to eliminate other causes.
Welcome and the best thing right now is study this website. Put on the coffee and read. Ask lots of questions.
First abortives: Imitrex injections,O2
First line transitional prevent:prednisone,frova,lithium
other prevents such as topomax, lots of combinations.
They usually start off with cafergot,02, beta blockers, and other less invasive drug therapies,,then progress to the bad stuff.
read read read
all the best
jb
http://www.miqel.com/clusterheadaches/clusterheadaches.html
http://www.calouch.org/cgi-bin/yabb2/YaBB.pl?catselect=calouch

Title: Re: Steve75's story
Post by georgej on Dec 7^th, 2006, 11:29pm

Welcome, Steve.

Read, read, read. Pay particular attention to the "oxygen info" link at the left side of your screen. Oxygen, properly administered, is a safe, effective, and affordable abortive for many of us.

Sounds as if you're a seasonal episodic, as I am. As far as getting hit at night goes, correct me if I'm wrong, but I'm willing to bet you get hit approximately ninety minutes after falling asleep--in the first REM cycle of sleep. That's very typical. REM sleep is a strong trigger for many of us. If you haven't seen this advice before, try to stay away from alcohol during a cycle. It's an inevitable trigger for lots of us, including me.

Try melatonin, 6-9 mg. taken 1/2 hour before bedtime. It can help to reduce the number of hits at night. Give it a week or two before giving up on it--it may take a while to have an effect.

Let us know how your visit with the neuro goes--and remember: most of us are not doctors, so follow your doctor's advice-- but we are expert patients. ;)

Again, welcome, and best wishes,

George

Title: Re: Steve75's story - new info
Post by Steve75 on Dec 8^th, 2006, 12:59pm

Thanks for the welcome and words of encouragement. Question for you and anyone else who sees this post...Oxygen...from what I've read on this site, in posts, and many other places, it appears to be the "wonder drug" for many of us. I am very curious to know, however....do any of you travel regularly (airlines). I travel quite often and am curious to know what sort of considerations/arrangements need to be made when traveling with O2. Any thoughts?

Additionally, is it typical for the schedule to change for no apparent reason? The last two nights have been pain free, but i've been getting one or two fairly minor headaches during the day...one mid-morning, and one late afternoon. The more i think about it, i can say that this sometimes happens during the spring cycles as well.

And i will be sure to let you all know what the Neuro says after i see him....unfortunately it's not going to be until 12/18, that's just the soonest they could see me.

Title: Re: Steve75's story
Post by Jonny on Dec 8^th, 2006, 10:17pm

on 12/08/06 at 12:59:16, Steve75 wrote:

I travel quite often and am curious to know what sort of considerations/arrangements need to be made when traveling with O2. Any thoughts?

You cant bring 02 tanks on a plane and airline 02 is not 100%.....so, there you are fucked.

on 12/08/06 at 12:59:16, Steve75 wrote:

Additionally, is it typical for the schedule to change for no apparent reason?

This beast will do whatever he wants, this you have no control over!

Good luck!

Title: Re: Steve75's story
Post by Steve75 on Dec 9^th, 2006, 6:20am

well, i guess the beast really will do whatever it wants. had a PFD, then had two attacks tonight. one from 1230-2AM, and then again from 445-6AM. it's been a really bad night, and now i'm probably going to sleep most of the day.

thanks for the comment on bringing O2 on a plane, jonny. I figured that was the case, you know, given all the insanely tight security these days.

This really sucks. Any good tips for improving quality of life? lack of sleep is going to kill me. Ironically, in terms of annoyance, the headaches don't bother me as much as the lack of sleep does, and lately my headaches have been the worst they've ever been :'(

Title: Re: Steve75's story
Post by Guiseppi on Dec 9^th, 2006, 9:42pm

Keep trying to find a good preventative, I use lithium when on cycle, I'm 46, male, weigh about 190 and take 1200 mg. of lithium a day when on cycle. It makes me sleep much better, some times too much better! The only other side effects are a slight tremor to my hands and you pea a lot at first! It blocks like 90% of the headaches for me. Oxygen, cafergot and occasional shots of imitrex handle most break thrus.

Welcome to the house, I hope you find some relief, these things suck.

Guiseppi

Title: Re: Steve75's story
Post by writer on Dec 11^th, 2006, 8:47pm

A caution: Be aware, though, that if you take lithium for any extended period of time, you will need blood tests from time to time.

Good luck--Barbara

Title: Re: Steve75's story
Post by Steve75 on Dec 12^th, 2006, 10:49am

Thanks for all of the great advice, everybody. Again, my appointment with Neuro is next Monday, the 18th. I'll post in the general message board and let you know how it goes.

In other news, I've actually slept the last 2 nights in a row!!!!!!!! ;;D

Have really only had shadows the last couple of days and it feels GREAT! This, after Friday night/Saturday morning when i had four consecutive massive attacks, didn't sleep a minute, and for the first time, really thought I was going to die. With a little luck and a lot of prayer, maybe i'm cycling off and going into remission until spring (with my sincerest appologies to the Chronics, this possibility makes me very excited!)

BTW, Ya'll are welcome to e-mail me anytime, or request to be added to my MySpace page and keep in touch there.

Ok, I'll check in later, back to work for me. ;)

Title: Re: Steve75's story
Post by Steve75 on Dec 26^th, 2006, 6:39pm

Sorry, I'm about a week overdue in telling you guys this. Went to the neurologist last week. At that point, I'd had nothing but a shadow here and there for about a week. He and I agreed that this cycle of clusters is finally breaking. with my apologies to the chronics, I couldn't be happier that I appear to be in remission....until spring, anyway. And with that, he gave me a perscription for imitrex incase I get one or two more really bad ones, and he said that there's really nothing we can do until I have another outbreak (most likely in the spring), at which time he wants me to come back to him as soon as they start, and he said he wants to start me on an injectible steriod therapy. Does that sound about right to any of you?