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Topic: How do your clusters end? (Read 575 times) |
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dave_in_nj
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How do your clusters end?
« on: Jul 20th, 2004, 11:27pm » |
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I went to a new neuro today, my third in three years. He did not have any breakthrough information for me and he gave me Zomig samples, Imitrex, pregnizone (sp?) and O2. I'm 36, episodic, and am 3 weeks into a pretty nasty cluster....it's very odd for me to suffer like this in July as it's been pretty much April/May and October for me the past three years.
Anyway, my question. For those who are episodic (I can't bear to think how hard it is to be chronic, my heart goes out to you) Do you find that the cluster goes away immediatley or does it taper away? The reason I ask is because the past few days, I have shaken off my afternoon HA and am now just (use the word just lightly) dealing with evening HA. Thanks.
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Fatcat
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Re: How do your clusters end?
« Reply #1 on: Jul 21st, 2004, 4:34am » |
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Do you mean bouts or single attacks? My actual attacks tend to taper away slowly over the space of perhaps 30 mins, if untreated.
My bouts normally reach a peak, with say 3 attacks each day. Then the number of attacks lessen, but the individual headaches can be just as severe. Often, I'll have several days without an attack so that I believe the bout's over and then suddenly I'll get hit with a kip 9 or 10 and then nothing more. Odd!
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don
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Re: How do your clusters end?
« Reply #2 on: Jul 21st, 2004, 7:02am » |
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Depends.
Are you doing a prednisone taper?
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dave_in_nj
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Re: How do your clusters end?
« Reply #3 on: Jul 21st, 2004, 1:39pm » |
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Don - I am on a prednisone taper...24mg today, 20mg tomorrow and so on
Fatcat - I am curious how bouts end for other people....does the sun come right out or does it stay cloudy for a few days...
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Superpain
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Re: How do your clusters end?
« Reply #4 on: Jul 21st, 2004, 5:33pm » |
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It's different for everyone.
Personally, my headaches "peak" and then just dissapear.
When I say "peak", I mean they build up in intensity and occur more often to the point that I suffer 15-20 K5-10's per day for at least 6 weeks.
In other words I get fucking drilled! Then I wake up one day and they're gone for a couple yrs...
Prednisone took me out of my last cycle a little early last time. Thank God, and the Doc...
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Chris
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Kris_in_SJ
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Re: How do your clusters end?
« Reply #5 on: Jul 21st, 2004, 8:23pm » |
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I think everyone is a little different.
A cycle for me starts with a HA at the same time at night, but at the beginning it isn't every night - maybe every third night. When I feel the first one, though, I call my doc and we start the Verapamil.
For the next couple weeks I'm like Superpain. HA's increase in intensity and frequency until I peak. for me that's 2-3 true HA's/day with constant shadows between.
I've found that even with Verapamil (ramped up to 480mg/day) and a Prednisone taper, I'm still going to have quite a few that require Imitrex injects.
They tend to fade away in the same way - gradually decreasing in intensity and frequency, and followed by shadows for a couple weeks more. Whether or not this is due to my "cocktail" I do not know - but I absolutely believe the cocktail shortens the cycle significantly. My first cycle without any meds at all lasted about 12 weeks. My last few have lasted no more than 4-5 weeks.
Is that what you wanted to know?
As for your meds - the Prednisone will probably help alot, but you might want to ask him/her about a preventative like Verapamil - many of us need both.
Also - is the Imitrex in injectible form? Pills are generally useless because they take so long to work, but nasal spray works for some, and injects work for many. 02 is great also. You'll also read alot on this board about mixing Tryptans - Zomig and Imitrex should probably not be used withing the same 24 hr. period.
Wow - I'm talkative tonight ! Hope some of this helps.
Hugs,
Kris
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Fatcat
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Re: How do your clusters end?
« Reply #6 on: Jul 22nd, 2004, 8:14am » |
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Dave -
Nope, it tends to stay cloudy for a bit. I have a real humdinger and then nothing, but my shadows remain for several weeks.
That said, things are different these days. I'm thinking of my untreated bouts, the last one being 5 years ago now. Since using verapamil, I can't tell when a bout ends and I've had shadows almost constantly for 2 years plus.
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Superpain
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Re: How do your clusters end?
« Reply #7 on: Jul 22nd, 2004, 6:02pm » |
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That's the one bad thing about meds... You're never sure if it's over or not. And it's a big scary decision to stop medicating and take the chance of getting your ass kicked.
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Chris
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johnd7
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Re: How do your clusters end?
« Reply #8 on: Jul 22nd, 2004, 7:03pm » |
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on Jul 22nd, 2004, 6:02pm, Superpain wrote:| That's the one bad thing about meds... You're never sure if it's over or not. And it's a big scary decision to stop medicating and take the chance of getting your ass kicked. |
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Tell me about it. I just realized that my Dr. forgot to prescibe enough Predisone to taper down. I think he just forgot or read what he did last time wrong. We have done this drill before so I just neglected to check the prescription. I just called his office so hopefully they will get me a refill so I don't have to go cold turkey. Prednisone sucks to be on and sucks to come off. 
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BlueMeanie
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Re: How do your clusters end?
« Reply #9 on: Jul 22nd, 2004, 7:14pm » |
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There is usually a peak during a cycle where you get hit many times for a couple of weeks then it tends to lesson (amount of hits per day) at the actual end of the cycle. I've had some that just end with a big bang and no more for 9 months. I've had others that end with a bang, then shadows and KIP 5 and below for a few weeks. They're always different and very unpredictable. The peak of the cycle for me is the only thing that is pretty constant.
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Fatcat
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Re: How do your clusters end?
« Reply #10 on: Jul 23rd, 2004, 8:14am » |
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on Jul 22nd, 2004, 6:02pm, Superpain wrote:| That's the one bad thing about meds... You're never sure if it's over or not. And it's a big scary decision to stop medicating and take the chance of getting your ass kicked. |
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Yeah true. My gripe however is that I'm on meds for 6 months a year, whereas when untreated, I was having short bouts every 2 - 3 years. Still, it could of course be much worse, so it's only a small gripe 
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don
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Re: How do your clusters end?
« Reply #11 on: Jul 23rd, 2004, 9:01am » |
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The tapers work pretty well but you need to be at a theraputic dose of a prventative towards the end of the taper or you tend to get whalloped again.
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TimJohnson
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Re: How do your clusters end?
« Reply #12 on: Jul 26th, 2004, 8:49pm » |
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I was just going to post this very same question!?!?!?!?! I am in the same nasty cycle. Mine are as regular as yours. Pretty regular for Spring and Fall and now.......BAM! I get hit in July! I take Verapamil and Topamax everyday and have for over a year and have been in remission for 14 months! I have been in this nasty cycle for almost three weeks. My headaches usually build in intensity until I get hit with a Kip 9 or 10 and then POOF! they are gone. I will have shadows for awhile....maybe a few 5 or less. This cycle has been wierd. I was having them at 2:00 PM like clockwork and then around 11:00 PM or 12:00 AM like clockwork - Kip 6 - 8. Last nigh had a Kip 9 with vomiting and today - nada - crapload of shadows! Started the Prednisone today! I hope it helps! Can anyone elaborate?
I am with you man!
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ex_pat_asia
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Re: How do your clusters end?
« Reply #13 on: Jul 26th, 2004, 11:36pm » |
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dave_in_nj
Many thanks for asking about how the attacks end. I found the replies fascinating both for the similarity to my own exprience and for the differences. In my case it is almost always a ramp down that occurs much quicker over time then does the slower ramp up. Usually it is about a week to ramp down and a 2 - 3 week ramp up to reach daily occurences at high severity.
I've not done well with medications like verapamil, lithium, or prednisone. (I realize these are entirely different and are mentioned as "representative of several that I have had prescribed in the past). It seemed to me that the "beast" always breeched these treatments. In addition, there was always the question of when to stop. I guess in my case it always seemed better to fight the fight on a skirmish basis though I will never rule anything out. It is possible that the cycle I am in now, at 2.5 months and still going, could have withered away were I on any of the possible combinations. That is one of the reasons I'm here.
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ex_pat_asia
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dave_in_nj
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Re: How do your clusters end?
« Reply #14 on: Jul 29th, 2004, 5:07am » |
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It's 5:02am here in NJ and I have been up for over an hour. The crazy thing is that I took 9mg of melatonin and went to bed at 11pm. When the beast woke me at 4am I was actually relieved I got 5 hours of sleep!
The Preg. taper ended last week and I am getting hit so hard again. I am 5 weeks into this cluster and I am all over the place, but mostly getting them at night.
My new doc started another preg. taper for me today, this one a little stronger. 60mg/day for 3 days and 40mg/day for 4 days and then he wants me to check back in.
The two things I keep thinking about with this cluster since it is at a very odd time of year for me is that I recently took myself off paxil...I hated the side effects. I remembered when my old doc perscribed it he said it could have the added benefit of being a preventative for the cluister headaches. The other thing is the weather. It's been stormy as hell here the past couple of weeks...
Getting back to the subject of this thread, I will post how my cluster ends. Let's see if they go out with a bang or a whimper. Thanks all.
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kimh
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Re: How do your clusters end?
« Reply #15 on: Jul 29th, 2004, 6:48am » |
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Hey Dave,
At almost precisely the same time I (Kim in NY) was going through the exact same experience. I took the Melatonin last nite as well. Hits have been coming throughout day and evening, but not usually so intense in the morning....until today.
Also, I know of another clusterhead who went into cycle after stopping paxil....
Well wishes
kim
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| « Last Edit: Jul 29th, 2004, 6:49am by kimh » |
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eyhavhedaches
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Re: How do your clusters end?
« Reply #16 on: Jul 31st, 2004, 4:59pm » |
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It is differant for everyone and usually differant for me each ha. Sometimes they will taper away in a 30 to 45 minute period if untreated. If i use an immitrex injection( my new leash on life!!!! thank you Immitrex!) than they taper in about 10 minutes. If I don't use an abortive than I usually suffer and suffer bad. I love the injections because they work however I usually get sick from the injections and vomit about 10 to 15 minutes after using them. However 3 minutes of puking my ass off is better than dealing with a ch for an hour and a half. 
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Kris_in_SJ
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Re: How do your clusters end?
« Reply #17 on: Jul 31st, 2004, 8:37pm » |
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Wow - Imitrex has never made me sick ... though it does make me feel like my hair is on fire. Personally, I love that feeling - it means my HA will be gone in a couple of minutes.
I can't even come close to imagining what it must feel like to throw up during a CH - death would probably be preferable.
Sorry ... I think I lost the thread of this thread ....
Kris
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StressFree
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Re: How do your clusters end?
« Reply #18 on: Aug 5th, 2004, 6:16pm » |
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My last bouts ended with multiple attacks daily and increasing severity, then stopped suddenly. This usually after giving up on all meds, as they weren't helping much anyway. Often I would have a near all-day cluster pain level before it finally stopped. Usually a six week cycle every couple of years during stressful times. Allergies often accompanying seasons prior to the cycle. Had been chronic as a teenager. Last cycle over 5 years ago at age 32. Try prayer - prayer should be our first resource, not our last resort. Rich Jr.
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saintslair
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Re: How do your clusters end?
« Reply #19 on: Aug 5th, 2004, 6:43pm » |
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Hi dave_in_nj,
I thought I had mine licked for this year when I didn't start my cycle (Normally in March or April for me). Then the end of May came along and sure enogh the beast reared his ugly head. I'm in South Jersey, I think it may have been the late start on the season this year and all this spring like rain we've been getting. That's just my two cents.
Here's hoping for Pain free nights and days for all.
Andy
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Superpain
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Re: How do your clusters end?
« Reply #20 on: Aug 5th, 2004, 7:40pm » |
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on Jul 31st, 2004, 8:37pm, Kris_in_SJ wrote:Wow - Imitrex has never made me sick ... though it does make me feel like my hair is on fire. Personally, I love that feeling - it means my HA will be gone in a couple of minutes.
I can't even come close to imagining what it must feel like to throw up during a CH - death would probably be preferable.
Sorry ... I think I lost the thread of this thread ....
Kris |
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You got that right. I've taken too much stadol before in the throes of a bad one (or two) and puked my guts up.
It increases the pain by about 3x. 
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Re: How do your clusters end?
« Reply #21 on: Aug 6th, 2004, 5:07am » |
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That stadol can be nasty. I was given a no vomit med (phenergan) to go with it.
Usually mine end with a giant kip 10, with the stadol ceremony, followed by a few days in bed.........or at least wanting to crawl into a hole.
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sturgida
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Re: How do your clusters end?
« Reply #22 on: Aug 6th, 2004, 5:20pm » |
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My cycles usually end like most of ya'lls with a gradual decrease with a few weeks of shadows. I don't use meds because I just discovered most of this information (and am going to my doctor next week with it) 
When I was in my teens and early 20s when I would have HAs daily for months on end I was a purist. I would never want to take anything in fear of getting addicted to something! I thought I was too strong and too cool. Suffering was sexy.
But now that I am older and have been on this road for almost thirty years I would sell an eye-tooth or inject myself with battery acid just to stop the pain. 
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motye51
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Re: How do your clusters end?
« Reply #23 on: Aug 8th, 2004, 5:50pm » |
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I would also like to know what to look for when an episode is going to end. I am a caregiver of a cluster headache sufferer and I don't think my husband is going to be able to stand this for much longer. When does it end? Do they start tappering off and get weaker? He just got diagnosed Friday, August 6th, and this episode has been going on now for 4 weeks. I can't stand this anymore. My husband is in so much pain I've never seen him like this before. Please someone tell me what to look for?
Melissa
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Redneck/Jimbo
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Re: How do your clusters end?
« Reply #24 on: Aug 8th, 2004, 6:24pm » |
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Melissa,
As everyone stated there is a lot of variation in how the cluster and each headache ends. Over the years mine has varied a great deal in length and intensity. One thing though is that we are in the same state. Lots of allergys, I only had one doctor in 22 years that thought there was a connection. I think there is. Don't give a damn what the docs say about that now.
The best doctors I have found (2 of them) had headaches themselves so they understood. Hope the cluster ends soon for your husband. Best of luck.
JImbo
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