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So how did it start for you (Read 2858 times)
Kilroy 2.0
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Re: So how did it start for you
Reply #25 - Dec 14th, 2009 at 1:12pm
 
I had my first ch attack after giving birth to my first son. I had to have an emergency c-section. They gave me an epidural. I started having them as soon as I got home from the hospital. I was sure that the anesthesiologist mess up and nicked something in my spine and that was why I was getting them. I went through almost 12 years of misdiagnosis before I was told I had clusters.  Tongue
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jon019
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Re: So how did it start for you
Reply #26 - Dec 14th, 2009 at 10:10pm
 
"known" trigger is an interesting concept....depends who you ask....for me...yup
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The LARGE print giveth....and the small print taketh away.    Tom Waits
 
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Skyhawk5
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Re: So how did it start for you
Reply #27 - Dec 15th, 2009 at 12:09am
 
June, 1988 while excavating a spot to build my garage, I started getting bad headaches on one side. I thought maybe I was exposed to something from the ground.

Dr. thought it was sinus then dental and then a tumor. Then March, 1989 while having one in front of a Neuro, I was Dx'd. I was chronic the first 2.5 yrs. After starting verap, O2 then lithium I became eposodic and have been since.

At the beginning I thought this must be something deadly with so much pain on one side. Little did I know that those first K-7-8's could & did get worse....

I can say I do have better control over the hits now than ever before. High flow O2 and DHE-45 shots for  backup. Imitrex doesn't work for me.

PFDN's, Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Anchor Yanker
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Re: So how did it start for you
Reply #28 - Dec 15th, 2009 at 5:10am
 
The first attack that I remember, I was about 18.  Sitting in my best friend's basement, playing Nintendo, working on my third or fourth beer with a big 'ol chew in my lip.  I had had the pain before, but that was the first one where I thought "This isn't right.  This is more than a bad headache."  That was the first time I remember my nose running uncontrollably and tears just streaming down my right cheek.  I immediately associated the attack with the chewing tobacco, as I was an infrequent user of that.  But I smoked and drank for another 7 rotten years.
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Emma_s
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Re: So how did it start for you
Reply #29 - Dec 23rd, 2009 at 9:01am
 
July this year I caught Swine Flu and then had Tamiflu tablets - ever since I took one of those tablets I have had these headaches.

Still have them now, but thankfully O2 gets rid of a CH in 5 minutes which is wonderful Smiley

PFDAN x
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« Last Edit: Dec 23rd, 2009 at 9:06am by Emma_s »  
 
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WileyP
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Re: So how did it start for you
Reply #30 - Dec 24th, 2009 at 12:59pm
 
Mine started in '89...woke me up from a normal night's sleep with a K7-8 in the left sinus area. Since I did have sinus problems from time to time, I took an Afrin and a couple Tylanols and it was gone in 25 minutes (duh!).

Of course, it came back the next night. Same time. Same pills. Same results.

After a week or so, they started getting worse, affecting the cheek and upper teeth on the left side, then spreading to the tear ducts and ocular nerves. I went to see my dentist and GP about them. The GP had x-rays done and declared that he could correct the problem with surgery. The dentist suggested removal of teeth. While I was mulling those options over during the next week or so, the headaches quite, so I decided against the knife.

About a year later, they came back. This time I mentioned it to my father, who was a physician and had had some strange night-time headaches for many years. He asked me to describe them and declared them to be cluster headaches...the same as he had had. He gave me his old portable oxygen tank (he no longer suffered), showed me how to use it and a prescription to have it filled for a year and sent me on my way.

The next set of ch's came on shortly thereafter, and I used the O2 as prescribed, and it helped very much...for about a week. Then the oxygen, which I administered as soon as I woke up with a headache, simply stopped the increase in intensity, but left me with a K4-5 shadow that lasted hours and hours.

Due to my profession, seeing a neurologist about episodic headaches was out of the question. The headaches always occurred during a sleep cycle and never affected my professional abilities or capabilities, so I just suffered through the episodes. They normally came on once a year, lasting 2-3 months with one headache per night. I simply went to bed a little earlier to make up for the lost sleep time.

I was about a year or two short of retirement when they started affecting my work. I had been working 12-hour shifts for about 12 years, half of them day-shift and half of them night-shift. Up until then, the headache cycles worked right along with my work shift, headaches coming on at night when I was on day shift and during the day when I was on night shift. That year, however, they started turning a blind eye to the clock, and one morning I went into a full-blown K9 headache while briefing my day shift replacement. Rather than go on disability, I retired a month later.

After that episode, 2 years passed before the beast reared its ugly head again, and that episode was relatively "normal". Then came the cancer, along with a few related surgical procedures and chemotherapy. Between late October 2007 and mid-January 8, I was hit by over 300 double-sided K8-10 headaches, each lasting from 1- to 2 hours. I went to a neurologist right away and he put me on Topomax, which cut out the night-time headaches...but did it exacerbate the frequency and intensity during the day? I don't know.

Now, 2 years later, they started up again in early November. This time about 80% of them are one-sided again and about the same percentage have an intensity holding at K8-9. I am averaging 4-5 per day, each lasting 45 minutes to 1 hour. Some days there are only 2 or 3 of them, but some days (like yesterday), there are as many as 8. Most nights give me 1-3 headaches...then there are glorious, wonderful nights like last night, when I got 11 (count 'em - 11!) hours of blissful, uninterrupted sleep.

I am encouraged by people like my father, our member here, Charlie, and others who, after 20-25 years have been relieved of the beast. My relationship with that bstrd has been going on for 20 years, now, and it is comforting to know that there may not be very many episodes left before he is forever relegated to hell where he belongs!

My sincerest best wishes to all clusterheads and their supporters, especially during this holiday season!
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