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Jaime
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Newbie Introduction
« on: Aug 16th, 2004, 10:13pm »
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Hi everyone,
 
I'm Jaime. 43 years old, self-employed, living in Palmer Alaska.
 
I have had occasional migraine headaches all my life. One or two a year.
 
I am in the midst of my first attack of what I suspect is a cluster headache. At first I thought I was getting a lot of sinus headaches brought on by a particularly bad hay-fever year, but recently - the headaches changed. I suspect some attributes of a rebound headache from taking over the counter remedies like alkaseltzer cold plus, aspirin, acetominophen, and ibuprofen. However, the headache that started 3 weeks ago is like clockwork, 9 p.m.,  11 p.m.,  2 a.m., 6 a.m., 10 a.m., 2 p.m. All day and night every day and night. I'm exhausted.  At first I thought the relief between aches was from the pills, but after two weeks of this, I stopped taking the meds and the pattern remains the same.  I have been off all the over the counter stuff for 72 hours, and the pattern continues. 20-45 minutes of attention getting pain, followed by 1-3 hours of dull awareness that something is there that could come back at any moment. It never really goes away completely.
 
There are some similarities and some differences from the migraines. The location just above and behind my left eye is the same. The tenderness of my left temple is the same. The migraine is accompanied by light sensitivity and smell sensitivity and nausea. This has none of those.
 
If I weren't self-employed (read uninsured) I would be checking out a doctor.  I can't afford health care, so I must rely on what I learn here.
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IndianaJohn
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Re: Newbie Introduction
« Reply #1 on: Aug 16th, 2004, 10:55pm »
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Hi Jaime,
 
Sorry to hear that you're in such pain, but it sounds like your in the right place.  There is a cluster quiz on the links to the left which may help determine if you indeed have clusters.  There are also other HA that have similar traits that can be easily treated.  
 
As for treatments, most of us are under a doctors care.  There are reasources for people without insurance. This link may help.
 http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1092257340
 
I stongly urge you to check this out.  Most of us clusterheads have to have medications to deal with CH.  Another alternative is to use Oxygen.  Check out the info in the links too.
 
Your really going to need a doc's help with this, there's just no way of getting around it.
 
 
Best of Luck!
 
John
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Jaime
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Re: Newbie Introduction
« Reply #2 on: Aug 16th, 2004, 11:23pm »
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Thanks John.
 
I took the quiz, and got a clear indication that I am probably suffering from CH. I answered yes to all the relevant questions.  I did answer yes to 2 questions that suggest some rebound headache complicating the pain.
 
I like the KIP scale, but don't know it well enough to refer to it. Not every wave is the same. Some are tolerable, and some leave me sitting on the ground rocking, or pacing.  There is some comfort in knowing I am not alone, and I have been reading all the links here for the past two days.
 
It would be nice to get an MRI to rule out an aneurysm or tumor. My gut tells me it's probably garden variety CH.
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AnthonyT
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Re: Newbie Introduction
« Reply #3 on: Aug 16th, 2004, 11:32pm »
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Actually, you can get around having a doc's help. It mostly comes down to whether you find need for the prescription drugs. And if you want to rule out (or generally check for) other conditions.
 
I was in a similar situation -- self employed and having no health care (in Canada even Smiley). Being self-employed allowed me to suffer the attacks freely (yay). It sucked, and I didn't get much work done during the episode... but my responsibilities were flexible, so I was able to whimper through it.
 
It sounds like you're getting hit pretty heavy though. Sleep deprivation becomes a concern. And if you do have responsibilities throughout the day... you'll probably need to get your preventatives and abortives.
 
You can find a lot of alternatives here which might work well enough for you. You just have to hunt between all the junkie talk. Wink Kidding guys! But if I didn't know what you're going through, it can look pretty bad. Tongue
 
Oh yeah... padding up your walls might be a good idea if you want to fight the beast unarmed...
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thebbz
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Re: Newbie Introduction
« Reply #4 on: Aug 16th, 2004, 11:57pm »
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No worky No eaty. Spend the money, go to the doc. Put it on the bill. If you have CH putting off proper medical care will catch up with you, (relentless). All the best to ya. I have lost up to 25lbs. in one cluster, with proper meds. You have to keep strong to fight these things. Until then you only can do your best.    
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miapet
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Re: Newbie Introduction
« Reply #5 on: Aug 17th, 2004, 12:30am »
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Sorry you're getting whacked . . .and sorry you don't have insurance.
If you have (or can get) access to o2, even welders, that may abort individual h/as . .. It worked for D's ch, and it worked for the migraine I tried it for, sot it's worth a shot.  
*positive light and energy*
miapet
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Re: Newbie Introduction
« Reply #6 on: Aug 17th, 2004, 8:38am »
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If you are getting rebound headaches from all the OTC pain meds it will take from several weeks to a few months for them to stop. Only at that point will it be possible to discriminate between rebounds and a true primary headache (i.e., headache not caused by some other problem).  
 
If you can spring $15 for it, I'd very much recommend this book:
 
HEADACHE HELP, rev. ed, Au: Lawrence Robbins, M.D. It will give you a good overview of the major types of headache and treatments. It's not a substitute for a good doc--but better than you present complete absence of medical care.
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Re: Newbie Introduction
« Reply #7 on: Aug 17th, 2004, 10:32am »
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Heres a few things that might help.
 
 
http://www.clusterheadaches.org/resources/non_script_treat.htm
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Kris_in_SJ
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Re: Newbie Introduction
« Reply #8 on: Aug 17th, 2004, 9:04pm »
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Hi,
 
So sorry you're suffering, but it sounds like you're in the right place.
 
Here's a little thought ... You've been give some great links.  There's a wealth of info in some of these articles.  Print it out.  Start a headache diary - note times, durations, intensity, etc.  Then, take it to the doc at the nearest free clinic or public health department.  Perhaps you could be educating him/her while still receiving decent medical care.
 
DON'T let not having insurance stop you from getting care!  This is a syndrome that, if left untreated, causes despair and can lead to the "ultimate" way out of it.
 
I'm sending you hugs and many PF vibes!
 
Kris
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Jaime
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Re: Newbie Introduction
« Reply #9 on: Aug 20th, 2004, 4:20am »
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I sure appreciate the support! Smiley When I first showed up here, I was going crazy,  and the attacks were peaking. When I introduced myself I was at a KIP level 6, and it went up to 8 for a day.
 
I had some melatonin I used in the past when traveling across time zones, and I've used it the past 3 nights and actually got some decent sleep. The demon seems to have retreated a bit, with only mild shadows the past couple days, and only one or two very light attacks each day.  Sort of maintaining at KIP level 2 & 3, which is so much better than last week I could cry from the relief.
 
I've been reading, and reading, and reading.... I now know more about headaches than I ever wanted to! LOL. laugh
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Jaime
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Re: Newbie Introduction
« Reply #10 on: Aug 20th, 2004, 9:37am »
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It is 5 am Alaska Time, and I just got woken up by the worst attack in 4 days.  Hovering between 7 and 8 in the Kip scale.  When it stabs, it makes my teeth ache.  
 
There are no neurologists listed in the yellow pages. Grrrr.  I found an AMA site that listed 5 active neurologists in Anchorage (about 45 miles away). I'll start calling them later today.  Maybe at least I can get some free samples to try.
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Prense
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Re: Newbie Introduction
« Reply #11 on: Aug 20th, 2004, 9:42am »
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on Aug 20th, 2004, 9:37am, Jaime wrote:
There are no neurologists listed in the yellow pages. Grrrr.  I found an AMA site that listed 5 active neurologists in Anchorage (about 45 miles away). I'll start calling them later today.  Maybe at least I can get some free samples to try.

 
Unless you are going to follow up with the neuro, I'd say stick with a GP.  It would be a heck of alot cheaper, and you should still be able to get plenty of samples.
 
Chris
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Kris_in_SJ
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Re: Newbie Introduction
« Reply #12 on: Aug 20th, 2004, 8:23pm »
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Ditto to Prense.  
 
Besides, with all the great knowledge you now have regarding your condition and the meds that might help, you might be making some Alaskan GP famous for his ability to treat Cluster Headaches.  
 
I've found my own GP to be far superior to any neuro.  He listens, empathizes and is willing to try the ideas I bring him.  He also goes to the websites and reads the articles I recommend.  I am his ONLY patient with this syndrome - small town in Michigan - but in fact, he's making a presentation on clusters at the next hospital medical meeting.  
 
Also ... he gives me many free samples.  The Imitrex rep leaves lots, and I'm the only patient who needs them!!
 
Kris
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Jaime
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Re: Newbie Introduction
« Reply #13 on: Aug 21st, 2004, 12:31am »
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Thanks for the tips. I was thinking a neurologist was necessary to get the MRI or CT scans to rule out other causes. I just got a part-time temp job as a receptionist for an Internal Medicine Specialist M.D.  I'll be working for him Sept. 7 - 16,  and should be able to get some samples from him. I'll talk to him about it, anyway.
 
I made it through the day. Whew! The shadow came on about 6:30 a.m., and has continued all day with only one pain spike just after noon.  I did canel a social event in Anchorage tonight.  I just couldn't face the 100 mile round-trip drive on so little sleep, with the possibility of getting nailed while driving.  
 
The idea that high pressure affects CH got a little refutation over night. It started raining just after midnight, and rained all night long. Evidently air pressure was not the trigger this time.
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Prense
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Re: Newbie Introduction
« Reply #14 on: Aug 21st, 2004, 11:06am »
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on Aug 21st, 2004, 12:31am, Jaime wrote:
Thanks for the tips. I was thinking a neurologist was necessary to get the MRI or CT scans to rule out other causes.

 
GP can order those tests...
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