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Topic: This is really getting ridiculous.... (Read 475 times) |
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dafreeman
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This is really getting ridiculous....
« on: Oct 22nd, 2004, 8:06am » |
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I've now officially entered the multi-CH/day arena  . I know that this is common for many here, but for me getting even just one day was more frequent than any past cluster. I can't help but think it's due to rebounding from imitrex. Ever since that treatment started, the frequency (and I'd almost swear the magnitude) of the HA's has increased exponentially. Seems like you just can't win. I've got O2 on the way, but probably not until next week. This just sucks! I think I'm going to only us the imitrex if I get an attack when I'm away from home. And until O2 arrives, I'm just going to battle though it. 
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E-Double
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Re: This is really getting ridiculous....
« Reply #1 on: Oct 22nd, 2004, 8:12am » |
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Hang in there and do whatya gotta do!
Wish i had answers for you and for me 
Be well,
E.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Bob_Johnson
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Alternative meds
« Reply #2 on: Oct 22nd, 2004, 8:17am » |
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Could be: We have seen a couple of medical reports to the effect that Imitrex appears to alter the frequency and pattern of clusters.
Might try another one of the triptans or try this med.
------
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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karma
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Re: This is really getting ridiculous....
« Reply #3 on: Oct 22nd, 2004, 8:37am » |
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I had a similar experience with Zomig. I stopped trying to abort with it after 4 days and within two days my hits were back to what was normal for me. That was my first and last attempt to use triptans.
For me it was way better to deal with what I knew than to risk an increase in hits, length and severity.
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Valerie
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Re: This is really getting ridiculous....
« Reply #4 on: Oct 22nd, 2004, 9:33am » |
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I've wondered the same thing - I use Zomig, but only when absolutely necessary. I think the predisone and verapamil have lengthened my cycle. I'm in week 6 now, and that's by far the longest cylce I've had. I'm getting off the verapamil now, having shadows etc. It's so confusing I don't know what to do. I have found that over the years my cycles and pain levels have changed. The good part is that the time between cycles has gotten longer. I'm hoping that since this cycle is dragging on, I'll have A LOT of pain free time coming my way. We can only hope and try to figure this thing out together.
Best of luck to you,
Valerie
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karma
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Re: This is really getting ridiculous....
« Reply #5 on: Oct 22nd, 2004, 10:25am » |
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Its not likely that the pred has affected the length of the cycle, at least not from what I've read.
I tried verapamil for the first time and only for a couple weeks. I'm sceptical on what it did for me. I started at 240 mg/day and went to 480 mg/day for about 5 days then was at 240 mg/day for about 7 days and still having twinges and shadows. These stopped completely about three days after I stopped the verap.
This was my first time on any meds. and what should have been 1-2 weeks at peak went to 4 weeks.
I'm glad I tried it but will probably not try it again.
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Bob_Johnson
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Re: This is really getting ridiculous....
« Reply #6 on: Oct 25th, 2004, 7:58am » |
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The eternal problem is this: Just because two things happen one after another does not mean the first thing caused the second.
In medicine, there are so many, many variables operating--our body, chemistry, drug interactions, etc., that we need to be cautious about jumping to conclusions. These medical decisions aboout starting/stopping meds really need to be run by the doc.
For example, many folks try Pred. to stop a cycle. One round doesn't work and they conclude it's a failure--not realizing that the range of starting doses runs from 10mg to 100mg. Point being, it often takes several trials, adjusting dosing and type of med before you can draw conclusions about effectiveness.
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Bob Johnson
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JohnM
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Re: This is really getting ridiculous....
« Reply #7 on: Oct 25th, 2004, 10:32am » |
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There have been many debates in the past on the issue of imitrex extending the cycle, increasing attack frequency and magnitude. Check the archives.
My opinion is yes - it probably does increase the attacks, but it is better to have a really good defense but get attacked more often, than to have no defense at all and get attacked less but suffer more pain.
Just my 2c
John
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ArCane
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Re: This is really getting ridiculous....
« Reply #8 on: Oct 25th, 2004, 1:02pm » |
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Sorry your getting hit multiple times a day. Hang in there. PF vibes heading your way.
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Ruth
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Re: This is really getting ridiculous....
« Reply #9 on: Oct 27th, 2004, 2:43pm » |
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Hi,
I have to agree with you, this is getting redamdiculous. I have been being hit sense August 18, tired pred twice, have imitrex shots, got o2 trying that. feeling defeated and down. Thinking about trying some new prevents, Depakote or nuerontin. Afraid they will make me feel really weird like the last prevent I tried.
Don't no what to do, I am like you, trying to hang in there and now wondering if they are ever going to leave. This is the longest episode I have ever had. I feel for you buddy as we all do.
Last night I used the o2 hits came back every hour, got up at 2:30 am fell down the stairs, what next.
I am still going to try to o2, we can't give into this beast.
But I am very tired.
Ruth
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EvertBoer
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Re: This is really getting ridiculous....
« Reply #10 on: Oct 27th, 2004, 6:54pm » |
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I have found as I get older (now 55, clusters since 19).
Longer periods between cycles (currently about 5 years).
The cycles seem to last longer (the last one was 7 Months).
The more successful I am at aborting, the longer the cycle lasts (my last 7 Month cycle, I managed to abort every single one).
At the peak of a cycle, with oxygen, I get about an hour or two between clusters at night. After about 2 oxygen aborts at night, when I get the 3rd one, I also use imitrex which then lasts for the rest of the night.
1/2 shot works for me just as well as a full shot.
I don't use any of the prevents, found most of them to do little or nothing with too many side effects.
With either oxygen or Imitrex shot, to be successful, I use at the first twinge. I have found that if I wait too long, nothing works and I go full blown.
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dafreeman
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Re: This is really getting ridiculous....
« Reply #11 on: Oct 27th, 2004, 8:53pm » |
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I just started prevents yesterday (prednisone taper & Verapamil). I've gone (and I know I'm going to jinx this) 28 hrs w/o a CH  .
I had the O2 delivered yesterday, but it's not the right equipment. It only goes to 5 lpm. I was going to try it anyway to see if it would still work before changing it out. When I told the guy who delivered it that I thought I needed 8-10 lpm, he said he'd never heard of anyone using that high a rate. I thought that was odd, so I re-checked it, but my memory served (for once).
Oddly though, I did have a headache after work, but it seemed more like a headache from my stiff neck. It definately wasn't like a knitting needle through the head. Does anyone else still get periods with a sore neck w/o a CH during their cluster?
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Ruth
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Re: This is really getting ridiculous....
« Reply #12 on: Oct 27th, 2004, 9:46pm » |
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I think the stiff neck is from the tension we experience from the CH's
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nani
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Re: This is really getting ridiculous....
« Reply #13 on: Oct 27th, 2004, 9:47pm » |
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Quote:| I know I'm going to jinx this |
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NO YOU WON'T! Use positive thinking... I know I'm afraid of jinxing, too but I try never to utter the words or write them.  I'm so glad you're getting a break!
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JohnM
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Re: This is really getting ridiculous....
« Reply #14 on: Oct 28th, 2004, 3:02am » |
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I'm with Ruth on this, I also get tension HAs during, and for a while after my CH cycle. I often have a really stiff and sore neck and shoulders for many weeks after the CH stops. Not suprising really due to all the stress and tension CH causes!
Hang in there mate. It will all pass.
John
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Gator
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Re: This is really getting ridiculous....
« Reply #15 on: Oct 28th, 2004, 3:33am » |
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After a year of 3 - 5 or more hits a day every damned day, with no preventatives found yet that work for me, I've come to the conclusion that I'd rather quickly abort several than suffer through one.
I use O2 and trex inject to abort. Am still looking for a preventative. Will keep playing the guinea pig until I find something that works or until it kills me. Either way I'm pain free and maybe someone else can benefit from the data collected.
Gator
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