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Topic: Constant clusters? (Read 1527 times) |
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donforsberg
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Constant clusters?
« on: Mar 11th, 2004, 10:41am » |
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Hi folks, new poster here but I've been lurking for a bit. I'm into my third week of a cycle after over a year of no pain. The first week was ok, with gradual increases in pain levels this last week. But yesterday was different. I got a kip 7 yesterday afternoon and a kip 8 last night about an hour befor I went to bed. After the CH passed, I still felt a persistent shadow of the kip 1-2 variety. I was able to sleep through the night, but I've had a kip 1-2 ever since waking up at 6 to go to work. So here I am at work with an annoying constant cluster headache. the worst part is the anxiety of wondering when it will crank up to a full blown attack. I've never had anything like this before. Usually I feel a shadow for a few minutes followed by 45 minutes of hell, then it slips away to no pain at all until the next one. Now I'm wondering if I'm gearing up for some major change in my CH cycle. Thanks for listening, and while I'm sorry that we're all here for such a horrible reason, I'm glad to know I'm not alone.
P.S. I'm not on any meds. I don't like to take them if I don't have to, but now I'm starting to consider going back to my neuro for something. I'd like to try O2 instead of any real meds.
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miapet
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Re: Constant clusters?
« Reply #1 on: Mar 11th, 2004, 11:12am » |
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O2 rocks for us! . . . sorry I can't give more specific about the possible changes of the beast . . .I do know that D is 'sore' in between the attacks right now . . . if that's any help?
miapet
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Giovanni
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Re: Constant clusters?
« Reply #2 on: Mar 11th, 2004, 11:38am » |
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Hey don,
Sorry about the headaches. I do not know what advice to give you since you're avoiding prescription meds. A lot us use verapamil >240 mg a day--it seems to help.
Some herbal medication might be helpful; melatonin, B-Complex, 5-HTP, fish oil. O2 is certainly worth investigating.
Good luck and wishes for quick relief,
John
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Virginia
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Re: Constant clusters?
« Reply #3 on: Mar 11th, 2004, 11:51am » |
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Don,
Welcome to the board. I never use to get "shadows" in the early days of my clusters but they appeared a few years ago. It wasn't enough to just get the full-blown clusters now I had to periodically get the shadows in between? GEEZ!
I take 3 Excedrin Migraines to knock a shadow out and about 99% of the time it works.
Good luck
Virginia
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The Clusterhead formerly known as 9erfan.
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Karla
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Re: Constant clusters?
« Reply #4 on: Mar 11th, 2004, 1:47pm » |
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I would get hit with 8 ha a day kip 10 and inbetween everyone I get shadow ha kip 1-3. The shadows last forever until the next ha kicks in. My ha occur like clockwork meaning I can set my watch to them because they occur at the same time every day. I don't bother to medicate the shadows. They can be annoing but I can easily work through them or do what ever it is that I want to do. At the time I am just grateful that the kip10 has ended and that I am getting a break.
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Karla
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flavin
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Re: Constant clusters?
« Reply #5 on: Mar 11th, 2004, 1:58pm » |
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Every few HA's i get will have a shadow last for the rest of the day or when i wake up after a night of pain. I once took exedrine migraine just to see it it took care of the shadow and it worked. I am learning to try different things now to try to help the pain.
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FZfan
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Re: Constant clusters?
« Reply #6 on: Mar 11th, 2004, 2:45pm » |
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I would echo others sentiments here in that I also experience the occassional all day shadow. Sort of a constant k2-k3. When it abates, I can usually count on an attack within a few hours. Had four attacks during the night, followed by an all day shadow yesterday. Three attacks last night.
The only med I am taking is Lexpro, as a preventative, and I don't think it's doing anything as I'm into third week now. But for aborting them I am using O2 only for the first time.
I have a narcotic available to me, it's within arm's reach right now, to kill the pain, but I've decided to stick with just O2 during this episode. The o2 is working at eliminating the pain better than I expected. The real trick to it is getting to it as soon as the attack begins. The longer you wait, the harder it is to abort it.
I also learned at this web site that I had been using o2 incorrectly in the past. I would highly recommend reading the oxygen info button on the left and giving o2 with no meds a try. So far in this episode, I have only had three h/a's I couldn't abort with it and it was always because I didn't get to the o2 soon enough.
Thanks to the strength I found in reading other posts on this board, I fought through the three h/a's o2 didn't help instead of reaching for the narcotic.
Besides, if o2 without meds doesn't help, you can then start trying meds.
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Samantha_Smith
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Re: Constant clusters?
« Reply #7 on: Mar 11th, 2004, 3:40pm » |
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Yes, I used to have a "constant ch" when the attacks first began in 2000. Oftentimes it felt like someone had dropped a burning lump of coal deep in my ear and lodged it in there. The pain was about a KIP 3 or so almost around the clock. Sometimes the pain was indicative of a cycle ramping up and sometimes it wasn't. I asked my neuro about the ear pain and he said that it was a "reference point" for the ch (in other words the ch had decided to reside in my ear for a while.) The beast is elusive and unpredictable. Make no assumpions. Hang in there!
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BobG
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Re: Constant clusters?
« Reply #8 on: Mar 11th, 2004, 4:02pm » |
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Quote:| I'm not on any meds. I don't like to take them if I don't have to, but now I'm starting to consider going back to my neuro for something. |
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Don't know your insurance/money situation but making the neuro appointment might best at this time. It may takes weeks to get an appointment and that would be weeks of un-necessary pain. The sooner you can see the neuro and get prescriptions the better you'll be able to fight back.
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KarynG
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Re: Constant clusters?
« Reply #9 on: Mar 11th, 2004, 10:47pm » |
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I'm a baby these days; I take 1/3 shot of imitrex for shadows.
I didn't have a single shadow the first five cycles (years), but have had lots of shadows the last two cycles (years).
Hope it eases up for you soon. Hang in there.
K
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t_h_b
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Re: Constant clusters?
« Reply #10 on: Mar 12th, 2004, 5:55pm » |
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Yeah, I take Imitrex if I have shadows and the O2 doesn't work because they can last for days. They're not as intense but they sure can wear you out. The first time I took the shot for shadows I felt like a wimp, but why suffer unecessarily.
I'll try the Excedrin migraine and see if that works.
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| « Last Edit: Mar 12th, 2004, 5:56pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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BlueMeanie
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Constant shadows are pretty common between attacks. Some days I have them, some days I don't. Ya never know with the Beast what's in store for you each day i guess.
PFDAN
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Flsunshine
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Re: Constant clusters?
« Reply #12 on: Mar 13th, 2004, 3:12pm » |
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I definately recommend O2. I waited six excruciating weeks before i got it. It works 100% of time for me (knocking on wood). I too had kip 3 ha constantly. O2 has taken care of that too. Verapamil has always worked for me in the past but had no success with it this time. One thing you see on this message board is how different we all react to different treatments/abortives.
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donforsberg
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Re: Constant clusters?
« Reply #13 on: Mar 15th, 2004, 1:49pm » |
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Thanks for all the great replies, guys. I think I'll see if I can score some O2 and give that a try. The constant shadow finally went away after I went home early and crashed for a few hours. Thanks for the support.
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