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Topic: Another New guy (Read 292 times) |
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Scullyh2
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Another New guy
« on: Jul 2nd, 2005, 9:13am » |
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Well, just found this place. Interesting reading about other people with similar pain cycles. I have suffered from these CH's since 1982. Diagnosed in 86. Life sucks sometimes.
I gather from reading I am an episodic sufferer and my current cycle come every 2 years +/- 1 month. They used to be an annual event in spring. I always thought them to be spring fever. Strange but true.
I am 44, wife, 3 children Boy19/Girls16/15.
Currently I am 5 weeks in to this cycle, which should be ending soon. I peaked out at 7 clusters a day with no medications. pain scales from 3 to 8. If there is light at the end of the tunnel it is knowing the most they last is 2 hours and life will go on.
Actually got some sleep last night, only one episode, so I am feeling pretty good, except it's such a nice day and I volunteered to work a day off.
Nice meeting you all...
Just want to know, is there anyone else here that just fights the pain off ??
Steve
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| « Last Edit: Jul 2nd, 2005, 9:42am by Scullyh2 » |
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lionsound
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Re: Another New guy
« Reply #1 on: Jul 2nd, 2005, 10:28am » |
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Hi Steve,
I guess you could say I just fight the pain off. Right now I'm pregnant and I cannot take any meds-- prevents or abortives except one ...Oxygen!!!!
click here or the link to the left
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
have you ever tried Oxygen?
I also am fond of ice(or bag frozen peas) on my neck/head and I'm a regluar meditator so I try to use my breathing to help lower my anxiety during an attack.
The best weapon I've got against the beast is the support found here. 
Sorry you suffer too, but glad you'e found us.
Welcome!
Be well and Pain free,
lionsound
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E-Double
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Re: Another New guy
« Reply #2 on: Jul 2nd, 2005, 10:32am » |
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Hiya Steve,
Welcome aboard!!!!
I personally went nearly a decade being un/misdiagnosed prior to getting diagnosed properly a little over 1yr ago.
This place is a godesend and I recall as if it were yesterday the feeling of relief knowing that I was not as crazy as once thought  but also not alone.
My cycles were very similar 2 brief "cycles" yet only @ night in the spring and fall thus it was easy to chalk up to sinusitis due to allergies.....sound familiar?
Last March my cycle began with its usual build up and still I thought nothing of it but "here we go again"....they finally went heywire in MAy and were no longer just Wake up calls....they entered the day and went from 1-2 attacks to getting whacked 7-10 times daily...I knew something was wrong and sought out help!!!
Up until that point I had bare knuckled it like you.
Some tricks that I used to use and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.
Since being diagnosed I have been on preventative meds and abortives such as imitrex injections (which I try my damndest not to use) I also use Oxygen......MOST here will highly recommend this if nothing else...
If you do choose to attempt medications, This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of danger/side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Sean_C
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I went 10 years without meds, it wasn't pretty 
Sean............................
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KMT
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Re: Another New guy
« Reply #4 on: Jul 2nd, 2005, 11:44am » |
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Steve, Welcome to the sight but sorry you needed to seek us out.
Quote:| Just want to know, is there anyone else here that just fights the pain off ?? |
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I fight the pain off unless it gets to a kip 9/10 then I use O2 then Imitrex if that doesn't help. I baby the use of my Trex so as not to waste it.
Hope that your cycle ends for you really soon. Wanted to introduce myself...............KimY
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aka...................................................... KimY
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burnt-toast
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Re: Another New guy
« Reply #5 on: Jul 2nd, 2005, 1:57pm » |
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Delays in proper diagnosis seem to be fairly common - took two years for me to find a neurologist that diagnosed me in 15 minutes. Finding the right medical help can be difficult.
In any case welcome - you'll find good information and great support from folks that really understand.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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fat___pam
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Re: Another New guy
« Reply #6 on: Jul 2nd, 2005, 8:29pm » |
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Hi, and welcome. I am a supporter, my partner David suffers with CH. He isn't on any perscription medication at this point but he has been taking Kudzu and Melatonin. They both seem to be helping. Dave is episodic and have been having cycles for the past 20 years. He has tried many different medications and hasn't had any luck with them. This board has been terrific and has opened our eyes to a lot of different things. Dave also likes ice packs and caffiene.
There is a ton of support here and many many useful suggestions.
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Kirk
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Re: Another New guy
« Reply #7 on: Jul 3rd, 2005, 1:23pm » |
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I had no relief from medications or anything else May 69 to June 2000
It was not a good time. Having a sunny disposition or having good people skills are not required of a Commercial Fisherman. So it hasn't caused any bumps in my career track.
Since discovering Imitrex and O2, life is good.
I cannot stress enough how beneficial O2 is!
If worse comes to worse and I run out. I'll have the Chief run a line up from the engine room. That stuff is a life saver.
Please be well.
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