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Topic: Need your input Brothers and Sisters! (Read 894 times) |
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mynm156
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hope life isn't a big joke, because I don't get it
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Need your input Brothers and Sisters!
« on: May 31st, 2006, 11:57pm » |
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I am Cluster Head x 13 years or so Chronic "OFFICIALLY" 2 years now. I am at my end as far as meds go my current regiment is Trex NS and Stadol NS as needed Verapimil 240mg twice a day, Lopressor50mg twice a day and 9mg melatonin @ night. I dont respond to O2 and have tried pretty much every other drug known to help us. I have used Cluster Buster Therapy still out to lunch on the results. I would like to know what you do to treat attacks and or help prevent. I have a pretty good PCP that will help me but I want to know what other meds or treatment regiments you use that maybe I have not tried. If you would prefer to IM me thats totally cool I am just looking for my families input as I continue to dance with the Devil.
Good Vibes and Pain Free Days Ahead For Us All!!
Your Brother in Pain
MYNM156
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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nani
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Got kudzu?
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Re: Need your input Brothers and Sisters!
« Reply #1 on: Jun 1st, 2006, 12:17am » |
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Frankly, Howard, Clusterbuster treatments are the only thing that has worked well for me. It took me awhile before I could say that with unwavering certainty, though. I had to stick with it, stay detoxed, and learn when to maintenance dose. I still battle regularly, as it isn't a cure. As a treatment, though, it's hard to beat. I average 40 days between doses. 40 days! As a 5 year (former) chronic and a 33 year sufferer, 40 days is well, to quote a friend "Bloody brilliant!".
Kudzu helped to take the edge off, but it didn't last, I'm afraid. I was also on a bucket of other meds everyday at that time as well.
If you want to reconsider busting, please let us know. Someone can help "walk you through it" and hopefully help the process along.
hugs and PF wishes, nani
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MJ
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Re: Need your input Brothers and Sisters!
« Reply #2 on: Jun 1st, 2006, 12:55am » |
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I'm with Nani
RC seeds are the only thing that has "ever" worked for me in 30 years.
I modified the treatment a bit untill it worked and have been taking a single redose about every 20 days or so when I feel CH symptoms coming back.
I take the seeds at night before bed and sleep like a baby
Though I am episodic, untill the seeds I never had a cycle last less than 4 or 5 months and a couple lasted 3 years.
The treatment that finally broke the cycle for me is here
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1138385923
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MJ
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Mr. Happy
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Re: Need your input Brothers and Sisters!
« Reply #3 on: Jun 1st, 2006, 1:40am » |
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When you get to the end of your rope, DETOX, then try LDN - Low Dose Naltrexone. About 5 mg/day. One chronic beta-tester is doing pretty good. O2 may even start doing it's thing.
I'm pulling for you. We're all in this together.
RJ
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Guiseppi
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Re: Need your input Brothers and Sisters!
« Reply #4 on: Jun 1st, 2006, 10:29am » |
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26 years of episodic battles. Lithium has been the most consistent preventative. I'm 46, male, about 190 lbs. I take 300mg capsules 4 times a day, 1200 mg daily. Takes a little over a week to get up in my system. I use a prednisone taper during that time.
For break thru's I use oxygen and oral cafergot. If I'm caught away from my oxygen I use imitrex. Wishing you luck, hurting sucks.
Guiseppi
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BobG
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Re: Need your input Brothers and Sisters!
« Reply #5 on: Jun 1st, 2006, 1:24pm » |
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Quote:| Verapimil 240mg twice a day |
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Many people are on higher, much higher doses. Have you talked to your doctor about ramping up?
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E-Double
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Re: Need your input Brothers and Sisters!
« Reply #6 on: Jun 1st, 2006, 1:33pm » |
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I'm with ya on the 2yrs chronic, however I detoxed completely in March and though I still have attacks life is so much easier.
Good luck
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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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unsolved1
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Re: Need your input Brothers and Sisters!
« Reply #7 on: Jun 1st, 2006, 1:38pm » |
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As with any drug, be careful if/when you increase the dose of Verap. I couldn't handle more than 400mg day. It slowed my heart rate down and lowered my BP too much 
Does the Trex NS stop the attacks quickly ? Have you tried the jabs ?
If you can, lose the Stadol ! It's going to bite you in the ass.
Goodluck,
UNsolved
PS. I abort the big hits with Imitrex jabs (4mg). To prevent, I use DHE and/or Solu Medrol IV. You gotta know what you're doing if you resort to these drugs to prevent though.
Just remember that there is always something different to try. Very few people have really tried everything
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Seed
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Re: Need your input Brothers and Sisters!
« Reply #8 on: Jun 1st, 2006, 10:15pm » |
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Nani,
I was hoping to take you up on your offer. I am in the position to try the clusterbuster treatments here very shortly and I have lots of questions. Is there anyone around who might be willing to answer some questions for me?
Thanks in advance!
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mynm156
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hope life isn't a big joke, because I don't get it
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Re: Need your input Brothers and Sisters!
« Reply #9 on: Jun 1st, 2006, 11:46pm » |
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We did ramp up my verap but it didnt seem to make a difference. Also with ther Lopressor I have to watch the usage of beta blockers and calcium channel blockers can cause me a little heart malfunction problem no body needs.
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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Pinkfloyd
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Re: Need your input Brothers and Sisters!
« Reply #10 on: Jun 2nd, 2006, 1:42am » |
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on Jun 1st, 2006, 10:15pm, Seed wrote: Is there anyone around who might be willing to answer some questions for me?
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There's always someone around to answer questions.
Ask away, but I would suggest starting a new thread instead of piggybacking and redirecting someone else's thread. Helps to keep things separated and with a thread properly named, it'll be more likely to attract the people that may have some answers.
Bobw
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| « Last Edit: Jun 2nd, 2006, 1:43am by Pinkfloyd » |
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"Nothing is so firmly believed as what we least know."
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rhino
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Re: Need your input Brothers and Sisters!
« Reply #11 on: Jun 7th, 2006, 11:46pm » |
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Has anybody ever tried a Cortisone injection in the Trigeminal Nerve aera?
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chewy
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Re: Need your input Brothers and Sisters!
« Reply #12 on: Jun 8th, 2006, 8:30am » |
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Have you tried IV DHE?
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Jasmyn
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Re: Need your input Brothers and Sisters!
« Reply #13 on: Jun 8th, 2006, 8:31am » |
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on Jun 7th, 2006, 11:46pm, rhino wrote:| Has anybody ever tried a Cortisone injection in the Trigeminal Nerve aera? |
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Yes, cortisone with an anti-inflammatory on a regular basis with my GP, over a four week period but unfortunately it did not stop the cycle or lessened the intensity of the next hit for me.
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Jazz 
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rhino
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Re: Need your input Brothers and Sisters!
« Reply #14 on: Jun 11th, 2006, 5:03pm » |
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I have got to find myself a new Doc. can anybody recomend a good Neuro or Headache clinic in Houston Texas
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smfaison
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Re: Need your input Brothers and Sisters!
« Reply #15 on: Jun 13th, 2006, 10:19pm » |
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I am 50 years old and have been an episodic all of my life. I usually get a 4 month spell every other year. I just started up a spell. I am trying Relpax with Topamax and Stadol. So far I think the Relpax is more effective than my old favorite, Imitrex because it lasts longer with no rebounds so far. But this spell is only a few weeks old! I will keep you posted. I used to do the prednisone, Sansert, Imitrex routine, with moderate success, but they took Sansert off the U.S. market. I thought I would have a panic attack!
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FramCire
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Re: Need your input Brothers and Sisters!
« Reply #16 on: Jun 14th, 2006, 6:36pm » |
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How about trying mygranol?
The IV DHE seems to also have good success.
Topomax (which I hate because of the side effects) has also had success.
Have you (and your doctor) read this? http://www.brightok.net/~mnjday/chtherapy.pdf
It details a ton of stuff. lots of suggestions.
Anyway. good luck. Here's to lots of PF days ahead for you!
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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