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mick_k
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New here, just joined
« on: Jun 24th, 2004, 12:05am » |
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Hi all, I can’t believe I’ve found this site, reading the FAQs and posts they seem to describe my symptoms in a way I have not found anywhere else. Any this is what I have, which I usually describe to other people as migraines, although there are a lot of migraine symptoms I don’t experience, e.g. no vision distortion (apart from squinting from light sensitivity), no flashing lights/dots, etc.
General symptoms:
It just started happening, about 12 years ago (I’m almost 42 now). Headaches are ‘seasonal,’ i.e. nothing for months, then attacks every day for two/three weeks, then nothing for months. Always occur on one side of face; although can switch from season to season. I think it’s usually left side though. One attack per day, usually at the same time. Sudden onset (15 mins). Can last about 3-4 hours; can feel completely drained afterwards.
Early symptoms:
I know when it’s coming. Dry/scratchy throat, weird ozoney taste/smell at back of throat, scratchy feeling in eye, all on one side. Pain/cramping/tension in muscles at back of neck leading to base of skull. Pinpricks of pain around the eye.
Full blown symptoms (all on one side):
Intense pain radiating out from eye socket, down in direction of sinuses, over top of scalp to back of head. Scalp very sensitive. Feels like nails or red hot wires being hammered into my skull. I think the 'Being smashed in the eye with a brick' analogy works well! Sinuses feel like they’re exploding. Teeth in upper jaw ache badly, lower jaw not so bad. Cheekbone very sensitive. Eye closes a bit. Some nausea, although no vomiting. Intestinal bloat; next day after an attack I can be constipated.
Triggers (not all the time, not consistently, and only ‘in season’):
Spicy food. Carbon monoxide? (e.g. in the back of badly ventilated cars; badly ventilated stand-alone propane gas fires). Bad posture/ergonomics, hunched over the keyboard all day. Slumping on couch or in bed, propped up with cushions/pillows, while watching tv.
Remedies early on (do not always work):
Caffeine in any form. ‘Neti,’ that is nasal washing, e.g. inhaling water up the nose until it runs down the back of the throat:
http://www.healthandyoga.com/html/product/neti.html Lying down and resting in dark.
Remedies during attack:
None really. Although walking slowly around can help. Light is bad. I can’t lie down, but sometimes try to, but then keep switching from front to back to sitting up. At night, I leave the bedroom to avoid disturbing my partner. Sometimes going outside into the night air can help. In general during an attack I’m useless and moaning in pain. Sometimes curled up in a ball, but not for long.
Remedies, general:
Chiropracty. I see from other messages that opinion is split over this, but it has definitely reduced although not entirely eliminated the frequency of ‘seasons’ for me. Previously, I’ve had all sorts of meds, probably nothing fancy, and nothing really worked. I’m not using any meds at the moment, although have some codeine left over from various root canals I take at night. I tend not to take meds in general anyway.
Anyway from reading the boards it seems I have this relatively lightly – and it’s bad enough! I can’t imagine it being worse, e.g. having this for months. Also not sure what I can do to help. I’m really busy, but I *will* be checking in on these boards, to see what’s going on.
So, saying hi, and wishing you all the best. Great site, very useful, thanks to all concerned!
Mick.
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alleyoop
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Re: New here, just joined
« Reply #1 on: Jun 24th, 2004, 12:45am » |
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Hi Mick,
To echo others, "Sorry you had to come looking, but glad you found us." Although not all, most of your symptoms do sound like clusters. The triggers are very interesting, as are your remedies. One things for sure, you're definitely episodic. As I am chronic and not near as knowledgeable as some of the others on this board, I'll leave it to them to advise as to medications, therapies, etc. As I'm sure you have already noted, there is a wealth of knowledge here. Use it.
Wishing you PFNAD!
Alley
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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Kris_in_SJ
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There's no place like home.
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Re: New here, just joined
« Reply #2 on: Jun 24th, 2004, 12:07pm » |
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Hi Mick,
Like Alley, I'm not nearly as knowledgeable as many on the board, but I've sure become more so since I found this wonderful site. There's a wealth of info here, though it's sure a bitch that we need it.
Your symptoms sure sound like they could be episodic clusters. I'm episodic too - always in the spring - but thankfully only every 3-4 years (so far). Cycles last 4-6 weeks for me.
I would recommend that you run, don't walk, to either a cluster savvy GP or neurologist. As I'm sure you've seen on this board, the right medicines can help, and with the abortives available there's absolutely no need to suffer through 3 hours of agony. Imitrex knocks mine out every time in under 3 minutes.
Wishing you luck and many PF days!
Kris
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Superpain
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GOT O2!?
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Re: New here, just joined
« Reply #3 on: Jun 24th, 2004, 3:40pm » |
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Welcome.
There is help available.
Seek out a neuro that specializes in headaches and get some medications.
Imitrex is wonderful for killing headaches...
But O2 is cheaper and with no side effects.
If you're in a hurry and can't get to a doc, goto a welding supply and get a tank of welders O2.
You will be amazed at what simple oxygen can do to a cluster! Imagine being able to stop a headache in 5-10 min's....
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Chris
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don
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Re: New here, just joined
« Reply #4 on: Jun 25th, 2004, 6:04am » |
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Quote:| Anyway from reading the boards it seems I have this relatively lightly – and it’s bad enough! |
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Identify .........dont compare.
Being relative doen't make your pain any less. You'll find a lot of treatment suggestions and support here.
Grab an oar and start rowing. It's a big boat. Lots of empty seats.
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| « Last Edit: Jun 25th, 2004, 6:05am by don » |
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mick_k
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Re: New here, just joined
« Reply #5 on: Jun 26th, 2004, 12:43pm » |
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Hi there again, and thanks all  Well, I'm starting a new (temporary) position in September that has good benefits, so one of the first things I'll do is see the GP and ask about neurologists and also Imitrex. Meantime, time for some research, especially Imitrex vs. generics, and also taking Imitrex with high cholesterol (FYI I have *very* high genetic (rather than dietary) cholesterol levels, about 400 combined, 80mg Lipitor/day and basically a vegan diet brings it down to 210-240).
So I just wanted to say again, this is the first place I have found in 12 years where my own, self-diagnosed symptoms seem to make any kind of coherent sense, especially the weird yearly and daily periodicities; so good to have found you all!
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alleyoop
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Re: New here, just joined
« Reply #6 on: Jun 26th, 2004, 1:45pm » |
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on Jun 24th, 2004, 3:40pm, Superpain wrote:Welcome.
There is help available.
Seek out a neuro that specializes in headaches and get some medications.
Imitrex is wonderful for killing headaches...
But O2 is cheaper and with no side effects.
If you're in a hurry and can't get to a doc, goto a welding supply and get a tank of welders O2.
You will be amazed at what simple oxygen can do to a cluster! Imagine being able to stop a headache in 5-10 min's.... |
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Follow the link on the left. Get some o2. It's pretty inexpensive. You won't have to wait until Sept. or beyond for some relief. 
Good Luck!
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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rtporter
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Re: New here, just joined
« Reply #7 on: Jun 26th, 2004, 3:18pm » |
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I suffered from cluster headaches from about the age of 25 to 55. These headaches were correctly diagnosed by a Navy flight surgeon back in the 70's. They were unilateral. Each series would commence with a headache of relatively small intensity which lasted for only 20-30 minutes or so. A week or so later another episode would occur, and the period between headaches would shorten over a period of several months with headaches of increasing severity and shortening periodicity until I was getting 2 severely painful headaches a day. I could set my watch by them. The period between headaches would then gradually lengthen again, and the pain intensity would decrease, until the episodes would disappear entirely for up to one year. The whole headache cycle would last for perhaps 4-5 months.
I was able to get some relief from 100% oxygen, which was readily available to me as a Naval Flight Officer. The use of epinephrine in aerosol form was also beneficial if I could use it in time.
The last cluster headache I suffered was while I was in a research camp out on the Arctic ice pack, believe it or not. The outside temperature was about 40 below zero. When the headache hit, I walked outside, threw back my parka hood, removed my balaclava, and walked around bare-headed for about 20 minutes in the numbing cold. Although I suffered mild frostbite of the ears, this extreme cold killed the headache, and I have never had another one since.
I was a moderate to heavy smoker during those years, so perhaps tobacco-related byproducts had something to do with triggering these episodes. I quit smoking about the time the episodes stopped.
So, in the for-what-it's-worth department, perhaps this extreme cold therapy could help someone else.
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alleyoop
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Re: New here, just joined
« Reply #8 on: Jun 26th, 2004, 3:47pm » |
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Thanks RT,
Definitely very interesting. I sometimes successfully abort a Ch by sticking my head in front of an AC outlet. Even when it doesn't abort, it seems to allieviate the pain somewhat.
PFNAD,
Alley
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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