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miapet
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looking for ideas
« on: Mar 2nd, 2004, 11:22pm » |
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Hi. I've been posting on the treatment/medications/etc spot, and been getting some great help!! I've also read and read and read (thanks to everyone for their posts/sharing!!) and learned some great stuff. But, now I have another question . . . so far, everything we have tried has all been more for aborting a h/a . . .but I need to break the cycle . . .(doesn't anyone in a cycle?)
Anyway, some history: my clusterhead has been having h/a for 20 years. He has previously been diagnosed as chronic. This cycle has been going for almost 5 weeks . . .and has went from 1 per night, to 2 per day, etc, and now we are at 1 every hour. He hasn't used pharmacy for 15 years . . and this cycle is bad enough that he WANTED a doctor. We completed a round of prednisone . . .and the cycle has intensified. Does anyone have any ideas on how to break the cycle? If they continue this growth pattern there won't be any recovery time . . .
mia (special thanks to everyone who has been so helpful so far!! I posted here because I wasn't asking about a specific med . . .not because y'all weren't fabulous!)
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Bob_Johnson
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Re: looking for ideas
« Reply #1 on: Mar 3rd, 2004, 8:09am » |
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I wonder if you have a doc with sufficient experience in dealing with difficult headache??
Don't assume that one failed trial with Pred means it won't work. The initial dose of Pred ranges from 10mg to 100mg. One cycle at a low dose may not work. Then you do another cycle at a higher dose.
Has your doc considered Lithium?
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Re: looking for ideas
« Reply #2 on: Mar 3rd, 2004, 9:26am » |
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IV DHE is used to break a cycle. Might work, might not...but will probably give him some much needed relief.
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Karla
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Re: looking for ideas
« Reply #3 on: Mar 3rd, 2004, 9:28am » |
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lithium at 900mg or verapamil at up to 960mg or trying both of these meds together will sometimes produce desired results were when using them alone wont work. These 2 meds are the most popular with the best results. Try oxygen to abort it is the safest and easiest to use if it will work for ya. Some people have tried Frova which should give 12 hours of relief with one pill. It is a long acting abortive that can be used like a preventative. However, for me it only gave me 2 hours of pain free livin and then the beast was back knockin on my door again. But it is worth a try. Elavil and zyprexa have also been shown in studies to work great for chronic clusterheads. If you do a search on these two meds you should be able to find some dosages that people have tried and had sucess with.
I just wanted to add that after seeing unsolved post on DHE I wanted to say I over looked that and that would be a wonderful place to start for trying to actually break the cycle and get a handle on things.
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Karla
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miapet
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Re: looking for ideas
« Reply #4 on: Mar 3rd, 2004, 11:17am » |
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I'm sitting here at work . . .greatful it's a testing day . . and writing down EVERYTHING you have all advised, thank you so much!
As for the doc, he seemed great . . .I had to fight with insurance (hmo) and the doc (they are a HUGE group, and refuse to refer out, due to bonuses) . . .but was able to get him to a neurologist *yay* . . .unfortunately, the guy is having some health probs of his own, and is out for the next 6 weeks because of surgery. (We are in the process of changing insurance.) I don't have the pred info with me, so I'm not sure what the dose was, I do know that he slept the first 2 nights, for the first time in years *happy dance*. This neuro also wrote for 02, but it took more fighting to get it . . .we've had it 2 days now, and it does abort.
He tried Lithium about 15 years ago . . .and it turned him into a total zombie .. .I don't think I can get him to do THAT again, but I'll share everything with him.
I do have a DEA question . . .is it dangerous? I know that he had heard of it years before, and at that time, it was a little scairy. I know, danger versus breaking the cycle . . .it's so hard.
I will look up all the options you have all suggested, and I will work on getting D what he needs.
I appreciate everyone being so helpful and quick to respond!
*sending you all positive energy*
miapet
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Tiannia
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Re: looking for ideas
« Reply #5 on: Mar 3rd, 2004, 6:26pm » |
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Wish I could give you any advise but I have none. Just wanted to let you know that you are in my thoguths and the fact that you are there with him is a great blessing mia.
Tiannia
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miapet
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Re: looking for ideas
« Reply #6 on: Mar 3rd, 2004, 8:21pm » |
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thank you for thinking of us . . .I know it will get better . . .I have to believe that . . .and all the information and help we are getting on this site can only improve our fighting ability!
Oh, do you (or anyone else) know if O-2 can be used preemptive? For example, if not having a h/a, can we try it right before attempting to sleep/rest? Or, is it best to just use it at onset?
miapet
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JDH
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Re: looking for ideas
« Reply #7 on: Mar 3rd, 2004, 10:25pm » |
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on Mar 3rd, 2004, 8:21pm, miapet wrote:
Oh, do you (or anyone else) know if O-2 can be used preemptive? For example, if not having a h/a, can we try it right before attempting to sleep/rest? Or, is it best to just use it at onset?
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Mia,
As far as I know the o2 won't do much good as a preventative measure. Maybe there are some who it has helped that way but it has only helped me at the onset of a h/a's.
pfdan's
Jim
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miapet
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Re: looking for ideas
« Reply #8 on: Mar 4th, 2004, 1:27am » |
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okay, O-2 is for abortive, at onset . . .thanks . . .
and, as I looked back at all the posts . . .I realized that I asked about the DEA *hahaha* instead of DHE . . .soo same question, only right acronym . . .is IV DHE really dangerous? I know the Internest freaked just seeing the meds the Neurologist gave us . . .anyway, big thanks to all of you . . . I'm keeping you all in positive painless thoughts!
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thebbz
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Re: looking for ideas
« Reply #9 on: Mar 4th, 2004, 1:33am » |
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I hope all the best for ya DHE IV drip...had it twice aborted but did not prevent. One nurse administered the DHE first...then goes tooling around the ER looking for the hypo lollygagging around looking for the phenegren back up ....all the while I was gagging and convulsing from the DHE my wife went ballistic needless to say good doctors are hard to find. I dont mean to frighten, but the next time they decide to use that poison on me I will say phenegren first please !!!! and when the demon strikes Ill pretty much say give me whatever..... Best Wishes thebbz
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Giovanni
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Re: looking for ideas
« Reply #10 on: Mar 4th, 2004, 8:53am » |
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Hi Miapet,
I sorry to say I never had luck with aborting an active cycle having tried steriods several times, etc. I DID shorten one cycle about 3/4 way thru with a combination of an increase in verapamil from 240 to 360 and adding melatonin @9 mg + B-50 complex.
I know it is very difficult to stop cold a well established cycle. My best hope (and working so far) has been to prevent one by prior doses of the alternative treatment. I have read where some cycles were broken with this treatment, but never tried it myself during that time frame.
How long has his previous cycles lasted? This should give you some rough indication of how long this one should last. I know that I have gotten slammed during the apex of the cyles and towards the end. Verapamil should really help him, but will take a week or so to begin to work and be helpful. Also, B-Complex 50 vitamin several times a day might be beneficial.
Good luck...........hope he's pf soon.
John
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miapet
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Re: looking for ideas
« Reply #11 on: Mar 4th, 2004, 9:31am » |
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thanks for all of this!!
lemme see . . .his longest cycle lasted for a year . . .lets hope that isn't what this is, he's already so tired .. . anyway, today he is going to the internest (who knows NOTHING and is afraid of everything). I'm calling to tell him what I want (and verapamil will be on the list, DHE sounds a little too frightening?). if we can break this one . . .i'll keep all the alternatives going 24/7 . . . it has to end . .right?
i am SO glad i found this site and so many wonderful people!
Sunday, i have a very important phone call to make!
miapet
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Prense
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Re: looking for ideas
« Reply #12 on: Mar 4th, 2004, 11:52am » |
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on Mar 4th, 2004, 9:31am, miapet wrote:lemme see . . .his longest cycle lasted for a year . . .lets hope that isn't what this is, he's already so tired .. . anyway, today he is going to the internest (who knows NOTHING and is afraid of everything). I'm calling to tell him what I want (and verapamil will be on the list, DHE sounds a little too frightening?). if we can break this one . . .i'll keep all the alternatives going 24/7 . . . it has to end . .right?
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As a chronic, I'd suggest settling in for the long haul. I am hoping that you guys have at least found an abortive that works. Keep trying to abort the cycle, but do not stress out about it. That is easier said than done, I know.
Long term use of pred comes with its own set of problems. I have heard that many docs do not even like to prescribe a 2nd taper for the same cycle. Just be careful.
If he hasn't tried DHE, I'd say go for it. That is assuming there is nothing medically preventing him from doing so. The doc should be able to easily determine that.
Keep us posted!
Chris
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rbmb
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Re: looking for ideas
« Reply #13 on: Mar 4th, 2004, 1:20pm » |
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Regarding DHE, I've been using it as an abortive for the past few years (I'm episodic) and I find it quite effective. I inject a 1 ml solution in the large muscle in my thigh with a one inch,25g syringe and the pain subsides in about 10 minutes. I don't feel any side effects (drowziness, etc) and I just return to sleep. The patient directions say not to use it more than 6 days in a row, but I have since I get HAs every night when in cycle and the only thing I notice is that the shot seems to take longer to take effect.
It's not much fun sticking yourself with a needle, but compared with the pain of CHs, it's worth it in my book.
Rich
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miapet
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Re: looking for ideas
« Reply #14 on: Mar 4th, 2004, 10:49pm » |
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we have been using oxygen for the past 3 days now . . .keeps the h/a down to about 12 - 15 minutes, although it takes it to the top and then recedes . . .is that common? anyway, I'm glad the oxygen is working, the cafergot is dangerous, and the h/as were coming to often to follow the 'safe' dosage.
He had me cancel on the internest, the appt time would have had him out and about during one.
As for the pred, the internest wants nothing to do with that (but he would give a huge script of cafergot . . .go figure?), so I'm pretty sure he won't do DHE. I want to see who's covering for the neurologist . . .
Rich, you muscle DHE? I thought it was an IV drip, and had to be used only in a controlled environment . . .this is interesting. You use it to abort the h/a . . .I wonder if it shortens the cycle?
On a good note . . .the cycle moved to 2 hours apart today *YES* . .so there was a little more recovery time!!
Again, thanks for all the help and words of encouragement . . .I don't even want to think what it would be like if I couldn't come here and ask questions!!
*positive energy and light*
miapet
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Re: looking for ideas
« Reply #15 on: Mar 4th, 2004, 11:36pm » |
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DHE...you can get it to give to yourself at home (IM), but I find that most doctors don't like to do it that way. You can't take it everyday, more than once a day, or for long periods. It does have a tendancy to raise your BP. I believe most ppl get it thru an IV at the hospital where they will monitor your BP. You can't mix it with triptans. ALWAYS ask for Phenegren FIRST.
I've done this drug many, many times (both IM and IV) and it always gives me a break from the headaches. I'm sure I'll do it again. Having several headaches a day scares me more than DHE. If he's never done it, and he's tired of the pain, it's worth a try.
Goodluck
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miapet
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Re: looking for ideas
« Reply #16 on: Mar 5th, 2004, 9:12am » |
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thanks for sharing that it works/relieves both ways. i've talked to him about DHE . . .and he says: last resort . . .I don't know how close to that we are . . .yet . . .we're kinda banking on combining O2 with some alternative treatements. I'm originally from the PNW, and I like a holisitc approach to medicine. It has just taken him a few years to realize that what it means (for me) is combine traditional and non-traditional in ways that work for you.
btw, just for a side note, lemon-grass-ginger tea enhances circulation . . .and ginger is good for h/a, like tension and sinus etc, so it's a plus. Ginger steam was also soothing, at the beginning of this cycle, and seemed to abort the h/a, of course, it only worked for a while . . .like everything else.
*peace and positive energy*
miapet
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Mia - see my last post re: Sinus Buster. It's an absolute miracle and it costs 10 dollars. 
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alone5min
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Re: looking for ideas
« Reply #18 on: Mar 6th, 2004, 10:35pm » |
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Mia, u r 2 b honored for checking into this for your loved one. We aren't easy to put up with during the attacks. I haven't any expert advice on breaking cycles although I came through a chronic cycle with surgery and now am episodic. I too am a degreed naturopath and experienced with all holistic approaches and I haven't happened along the answer there either. Although the herbs you mentioned are good for relaxation. Alternatively niacin that causes flushing is known to keep headaches away and I use it. It has to be taken carefully and unfortunately, it provokes an attack during a cycle 
From personal experience I've found that keeping the onset intensity from becoming too intense (imitrex, other) is the trick and after a week or two, they start lessening on their own. In a chronic situation, nothing usually keeps them from being intense. Is there one attack lesser or more than another for him? There could be some gap there that can be worked with before going for the extreme routes.
Sorry, didn't mean to ramble. Good luck and thanks for caring.
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Mark C
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Re: looking for ideas
« Reply #19 on: Mar 6th, 2004, 11:23pm » |
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miapet
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Re: looking for ideas
« Reply #20 on: Mar 7th, 2004, 4:31am » |
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alone, I'm confused by what you meant about one attack being less than another?(sorry) so i don't know how to answer that . . .
Mark . .thanks for the link . . i'm such a tard . .at first i thought . . huh? a blank post! hahahaha, but i figured it out!
again, many many thanks for everyone's help!
miapet
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alone5min
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Re: looking for ideas
« Reply #21 on: Mar 7th, 2004, 10:23pm » |
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Sorry for the confusion. I was referring to pain intensity.
Is one episode more or less painful than another. Can an attack be limited in duration or lessened in pain level? Or are they all the same?
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David A
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Re: looking for ideas
« Reply #22 on: Mar 7th, 2004, 10:49pm » |
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IV DHE --- is my friend  I know it well and it kick bitt for at least a day or so --- has not broken my cycle but when you hit k10 as we all know it that or  .
Iam curious if he is not having another problem along with the CH for it to be that bad being hit every hour...???
thanks dave
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miapet
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oking for ideas
« Reply #23 on: Mar 8th, 2004, 1:53pm » |
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alone and dave (gonna respond to both y'all here *g*)
they were all intense and long . .which is why the frantic search for help
The round of prednisone gave us 2 days and nights of almost pure peace!! The cafergot (while fighting for the oxygen) would abort.
Oxygen shortens the h/a, although it brings it on full force before it backs it out.
As for othe health problems . . . he did have some health stuff that on anyone else probably wouldn't have been more than a pain in the fanny, and really was more an annoyance than anything, but it may have brought this on?
This isn't the first time he has h/a so close together. The worst was when as one would be ending, another would be starting. Just, as a rule, we don't have them this close together . . . just daily/nightly.
I know I would give ANYTHING for him to never have to watch a clock again . . .
thanks for all your help and kindness!
miapet
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alone5min
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Re: looking for ideas
« Reply #24 on: Mar 8th, 2004, 10:35pm » |
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The oxygen therapy did that to me too. When I was chronic there wasn't anything in this world that would come close to stopping them nor their frequency. I'm glad he got a 2 day rest. I'm sure it was disappointing on their return though. Been there (still am). Keep us posted on your next move. Take care.
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