Posted by Ethan Solomita (18.104.22.168) on September 09, 2001 at 04:03:18:
Hi! I just discovered this site, and since the home page suggests that we share, here's my story of pain. My clusters can be bad, but not as bad as some. The catch is that I also have another kind of vascular headache variant, called a lower-half headache. Unfortunately the treatments for the two are separate, and I'd be very happy to find a single drug for the two.
So first, my cluster story. I've been having them since I was a little kid, but they weren't diagnosed at that time. They were very sporadic at that point, but somewhere around 19 years old they became much more common. My season (until last year) was always November. Notably, it always started very shortly after I first had to keep my bedroom window closed at night due to the cold outside.
Like many I'm sure, I went for years following the allergy and ENT paths to no avail. A couple years ago I went to a neurologist who said "Oh, it's cluster headaches, here take these Imitrex samples". To say that my in-season life changed after that point is an extreme understatement.
Last year my cluster bout was 6 weeks long in January, but previously it had always been 2 weeks in November. But I seem to have a larger pattern, as shown by my other headache, the "lower-half" headache. I have a 6-month-on / 6-month-off season, which fairly well follows the SF Bay Area's winter/summer seasonal pattern.
Sometime in April things get better, and I only get periodic mild lower-half headaches, and occasional 2-5 minute cluster "threats". This lasts until November, when the bad season hits. I then get a nearly perpetual lower-half headache for 6 months, plus the bonus cluster bout season.
During this entire 6-month period I become more susceptible to cluster attacks. 90% of the time I'll get one every time I fly, almost exactly 45-60 minutes after takeoff. (The Imitrex is now always kept on hand in a fanny pack) Also I sometimes get a cluster attack 45-60 minutes after walking into a building, typically a central-air office building, or a movie theater. A movie is about a 1-in-3 chance of headache. When I was 20, I worked in an office building that would always trigger the headache exactly 1 hour after entering.
I also have the alcohol trigger during this 6 month period, but not during the summer 6 months. So far, my treatment of the clusters has been Imitrex nasal, and Inderal for the lower-half headaches. I've not yet had prophylactic treatment for clusters, but after my last 6-week season, I'll be investigating that possibility rather than Imitrexing endlessly.
I've pre-bought 3 boxes of Imitrex to prepare for the season, using last year's refills. BTW, I actually got my insurace company last year to allow more than the 1-refill-per-month norm. I just had to request it.
What's a lower-half headache? Since you asked 8-), it's a much much milder pain than a cluster, but it is often enough to make it very hard to focus on either work or pleasure. The pain level can be very level for hours, varying gradually over the course of the day. Of course, the catch is that it doesn't go away at all. Maybe 1 day in 7 during the Winter.
The pain for me is along side the nose but behind the bone, ie. not on the skin, often extending to the back of the neck where it feels like I need a massive neckrub. The pain is just phantom, however, since a neckrub does nothing. Sometimes it even extends to a gnawing feeling along the upper teeth. Always, always, it is accompanied by a closing of the nasal passages, usually moreso on one side. Sometimes Afrin/Neosynephrine nasal spray can help with the pain in the nose from the swelling of the nasal passages -- ie. it causes the nasal passages to relax and reopen. But you can't use those sprays for very long before they rebound.
I only wish that the lower-half headaches were half as well researched as clusters. Unfortunately, since they are relatively less severe (although ultimately 6 months of distracting pain is more significant than 2 weeks of ridiculous pain), lower-halfs are barely researched. Mainly they find that migraine treatments help, although not the triptans.
I wish that I could find a unified treatment for the two, but I'm not aware of one. (Any lower-half experts out there? 8-) I've also had a crazy time getting treatment. Although the neurologist I went to found the cluster, when I described the symptoms of my other headache he just said that there was nothing he could do.
I finally went to the Stanford Pain Management Clinic, where I was diagnosed by the NP with the lower-halfs. She found it in a standard text on pain in the same chapter as clusters and migraines. After that, I've lost all faith in the first neurologist, who couldn't even open a standard text. When I told him the new diagnosis, he shrugged, and seemed more disturbed at the prospect that I was seeing a different neurologist.
So I ain't going back there. But the Stanford clinic isn't meant to be for ongoing treatment. Ah well!
I should stop rambling now anyway, since this has gotten ridiculously long. But this site encouraged people to share their pain, and so I have! If only the Winter weren't coming fast upon me...
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