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Topic: 8 weeks in hell (Read 2032 times) |
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porkchop1
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where to begin? the never ending sleepless nights that translate into strung out days? the well meaning, but uneducated friends and co workers who tell me that they are sorry about my husband's "migraines"? the caring and wonderful general physician and staff, who want to help but cannot keep up the pace with the fucker? (fucker=ch) how bout the pharmacist, who could now make a career out of mixing his rx's alone? (yes, first name basis for she and I now) I have had it with these fuckers now. It's been 8 weeks exactly. Referred to neuro, this guy better be ready for me, because these days it takes more than advanced medical degrees to impress me. Imitrex? hahahahah! the devil laughs at it and carries on. Zoloft? repeat prior line. Lithium? repeat. O2? tee hee! verapimal(sp?) zip. Prednisone? been there, done that. the only thing we can do now is shoot Migranal and pray for daylight. And that, as you all well know, is not only expensive at $25.00 per sniff, but does not PREVENT the fuckers. Anyone, anyone anyone that has any ideas for drug cocktails, natural remedies, anything. please reply. also anyone knowing of any decent neuros in sarasota...it's been a long 8 weeks[font=Verdana][/font]
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Jimmy_B
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I'm surprised the Imitrex didn't help! Usually it kills a cluster very well. The problem we usually have with it is not being able to get enough for a Cluster bout.
You may also be using the O2 wrong...there's a certain way it needs to be used...non-rebreather mask, certain LPM's.
I don;t have any suggestions other then ask your neuro to try another triptan, (As long as triptan's are safe for ya.) or go a more non-traditional approach. i.e.
www.clusterbusters.com
Good luck
Jimmy
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Prense
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Re: 8 weeks in hell
« Reply #2 on: Feb 29th, 2004, 10:13am » |
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on Feb 29th, 2004, 9:56am, Jimmy_B wrote:| You may also be using the O2 wrong...there's a certain way it needs to be used...non-rebreather mask, certain LPM's. |
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Click the oxygen info link on the left...it will break down the correct usage.
Also, most people who don't use imitrex, do so because of side effects or they found something else that works. I too am surprised that imitrex did not do anything. For me, the injections are about 80% effective at aborting and about 99% effective at reducing the intensity.
Other than that, alot of folks are having success with Zomig NS for aborting, and there has been a few having luck with topamax as a preventative.
Best wishes!
Chris
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porkchop1
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thanks for your suggestions, we will revisit those doses. I should have told you that imitrex DID work wonderfully at first - but then it just starting pissing the CH off and stopped working at all. That was last cycle (1 1/2 years ago, when it reappeared out of nowhere from a 10 year remission). Well, I'm thinkin that maybe we have just reached bottom ;; because, yes, we did just use capascin(sp) cream (meant for arthritis!) on a qtip, into the nostril. but you know what, he says it hurts alot less than the CH's! Read about this about 4 am this morning... have you ever tried it? something about sp receptors or something... but I ramble... thanks for your response, we may have to again get with the o2!  wish us luck.
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1MajorPain
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Re: 8 weeks in hell
« Reply #4 on: Feb 29th, 2004, 2:26pm » |
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are you taking the imitrex pills or shots? The pills were way to slow to do me any good when I used to take them. O2 at high flow?
Hope things do get better!
Major
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| « Last Edit: Feb 29th, 2004, 2:30pm by 1MajorPain » |
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bamjd
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the cluster head from HELL
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Re: 8 weeks in hell
« Reply #5 on: Feb 29th, 2004, 2:41pm » |
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Have you tried Inderal? My Dr. put me on Inderal and it seem to cut down on the severity. When they get bad I still use the imitrex nasal spray also. good luck 
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May the best day of your past be the worst day of your future.
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pubgirl
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Pork Chop
Please don't be offended by this question, but if the usual CH drugs don't work, are you sure that the diagnosis of CH is correct?
Some of the other TAC's are quite similar to CH, but have different treatments entirely.
Wendy
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kissmyglass
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Re: 8 weeks in hell
« Reply #7 on: Feb 29th, 2004, 4:40pm » |
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Did you try Verapamil & Lithium together? Also, like everyons said already, make sure you are using the Oxygen correctly.
Wish I had some full proof advice for you...just read as much here as possible & hopefully you'll be able to find something that works.
Try to stay hard
Kev
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Giovanni
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Re: 8 weeks in hell
« Reply #8 on: Feb 29th, 2004, 4:43pm » |
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Hi Porkchop,
A lot of us had luck with melatonin (follow the old links from a couple months back). Also, B complex 50 seems to help me along with a good multi vitamin.
Right now I'm on the alternative treatment and doing great so far. Take a look here if you are interested:
www.clusterbusters.com
Good luck,
John
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Scooter
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Re: 8 weeks in hell
« Reply #9 on: Feb 29th, 2004, 6:25pm » |
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Four years ago I was chronic except with me the imitrix stoped the pain but they kept returning day after day. O2 would stop the pain 95% of the time but most of the time they would return with in 15 or 20 min. I had tried all of the usual stuff and was takeing Verapamil 240 time release and my Dr. wanted to try one more thing before getting me to a specialist, he added inderal 20 mg. three times a day and the headaches stoped for four years. Hope this helps.
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Virginia
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Re: 8 weeks in hell
« Reply #10 on: Feb 29th, 2004, 7:46pm » |
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CLUSTERBUSTERS!!!!!!!!!!!!!!!
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The Clusterhead formerly known as 9erfan.
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FZfan
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Re: 8 weeks in hell
« Reply #11 on: Feb 29th, 2004, 11:39pm » |
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I also got no help at all from Imitrex, Zoloft, or anything else i ever tried. O2 worked about half the time.
Then tried the following treatment, which i described in more detail in my welcome post.
Drink two ounces of Diamond Headache Elixer - you can only get this from a compound pharmacist and it's pretty expensive.
Take a tab of oxycontin.
Suck oxygen at flow rate 8 for 15 - 20 minutes.
I always get relief around 10-12 minutes into the o2 breathing using this treatment.
This treatment was over 90% effective for me. The theory behind it is the elixer is supposed to enhance the effects of the oxygen and the pain relievers.
Again, I say this worked for me and is the only treatment I have tried that has ever knocked down one of mine.
Down side is I'm zombied out for the next several hours. Which is, of course, preferable to the alternative. Good luck in your quest to find something that works and I sure hope you find it soon.
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Prense
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Re: 8 weeks in hell
« Reply #12 on: Mar 1st, 2004, 1:49am » |
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on Feb 29th, 2004, 11:39pm, FZfan wrote:| Down side is I'm zombied out for the next several hours. Which is, of course, preferable to the alternative. |
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I have to disagree. I would prefer to ride out the CH for 3 hours, then to be a "zombie" for half the day!
I'm glad you found something that is working for you, but I have yet to find a painkiller that touches my attacks. Not to mention, I couldn't imagine taking painkillers 4+ times a day.
Like I said though, I am glad you found something that is working for you.
Chris
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randal
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Re: 8 weeks in hell
« Reply #13 on: Mar 1st, 2004, 9:04am » |
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I am going to get shit for this remark also but what the hell. I have been in cycle for 5 weeks and cant slepp or do anything really.Imitrex does work well but if you need that 6 hour once a week sleep-This is what I do. My doctor gives me 150 cc demerol 50cc vestoril and even though you can still get the cluster while on this it goes away quick and you get sleep.I dont care if its a opiant or not it beats the fucker down and lets me slepp once a week and thats beats my demon. It's your call but man what a relief. : 
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Charlie
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Re: 8 weeks in hell
« Reply #14 on: Mar 1st, 2004, 6:11pm » |
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After about 5 days, Inderal would begin to slow down the attacks and lessen the severity. Not everyone has this kind of success and Inderal isn't on many peoples list of great drugs.
Pay attention to these posts though and retry some things. You never know.
Good luck and keep posting.
Charlie
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Lizzie2
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Re: 8 weeks in hell
« Reply #15 on: Mar 1st, 2004, 6:17pm » |
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on Mar 1st, 2004, 6:11pm, Charlie wrote:
Pay attention to these posts though and retry some things. You never know.
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Really agree with this! I'm willing to retry some of the meds that have failed me in the past because there's always the chance it could work this time. Just take each new thing with an open mind that it might work, and give a try to the suggestions and other things that work for people here! Good luck and hang in there!!!
Lizzie 
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FZfan
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Re: 8 weeks in hell
« Reply #16 on: Mar 1st, 2004, 6:30pm » |
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on Mar 1st, 2004, 1:49am, Prense wrote:
I have to disagree. I would prefer to ride out the CH for 3 hours, then to be a "zombie" for half the day!
Chris |
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Oh, I agree completely. And most of the time I don't take the oxycontin. That's what puts your dick in the dirt for about 12 hours. But if it's the weekend, and I've been suffering with them all week, sometimes being a zombie is the only way to get some rest.
Besides, the original poster was asking for anything people are doing to knock one down, and if the oxycontin can knock one down for someone who hasn't experienced the joy of feeling one melt away, well, you never know if you don't try.
Sometimes the need to knock one down (k10) overides the need to stay focused the next day. The risk is, of course, becoming addicted to using these kind of meds for every headache.
And it is a significant risk. Ask Rush.
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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Prense
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Re: 8 weeks in hell
« Reply #17 on: Mar 1st, 2004, 6:40pm » |
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on Mar 1st, 2004, 6:30pm, FZfan wrote:Sometimes the need to knock one down (k10) overides the need to stay focused the next day. The risk is, of course, becoming addicted to using these kind of meds for every headache.
And it is a significant risk. Ask Rush.
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I completely understand where you are coming from. I guess when I read these posts, I try to relate to my situation. Currently, I am fighting to keep my job in the Air Force. There is no way in hell I can further jeopardize that with medications. Meds like oxy scare the hell out of me.
Man, CH sucks ass!
Chris
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FZfan
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Re: 8 weeks in hell
« Reply #18 on: Mar 1st, 2004, 6:54pm » |
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I hear ya. I have a great job that is not worth any amount of pain to risk losing. So I've learned to make it through work (as I'm sure you have) the next day with no sleep/energy, and if necessary, take vacation days to avoid calling in sick.
Suffering through one of these while you're at work, though, that has got to be the worst. I would much rather have 'em all night long than have just one at work.
CH really blows!
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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UN_SOLVED
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Re: 8 weeks in hell
« Reply #19 on: Mar 1st, 2004, 7:12pm » |
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I too am surprised the Imitrex didn't work. The pills and nasal spray doesn't do a thing for me, ONLY the injections work.
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I'm STILL alive ?
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Lizzie2
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Re: 8 weeks in hell
« Reply #20 on: Mar 1st, 2004, 7:38pm » |
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If you need to zonk out, there may be some safer alternatives to oxy. Zyprexa, thorazine, compazine, and promethazine are all pretty good knock out drugs, and zyprexa IS sometimes used as an abortive for CH. Never know...you might stop the beast in its tracks and get a good night's sleep! A decent dose of melatonin also helps many people here get a little rest. I'm sure there are more things, but if you are looking to really zonk out, I'd look into some alternatives to oxy. Just because of how dangerous it can be. A hefty dose of ativan or klonopin can do it, but they can be addicting, so you have to be careful with that.
Keep on fighting!
Lizzie
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BlueMeanie
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Porkchop,
There are hardly any of us Clusterheads that CH meds works for all the time. The Beast figures you out and somehow gets around your abortive. I find you need a few different choices. I usually use one abortive for around 4 days before going to something else. You gotta stay ahead of the Beast. Of course with doctors recomendations and your health condition makes a difference. Those DRUGS you're taking are NOT for Clusters. I see TOO many people posting about being Zombies. CH's sucks YES, but a Zombie is NO better. Just my opinion.
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Lizzie2
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Re: 8 weeks in hell
« Reply #22 on: Mar 1st, 2004, 9:53pm » |
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Something I've discussed with a few people:
Zombie's don't have headaches...but then, Zombie's don't have jobs, graduate from college, have functional relationships either!!!
Lizzie
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porkchop1
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Re: 8 weeks in hell OVER!!!
« Reply #23 on: Mar 6th, 2004, 6:48am » |
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 Well, just wanted to thank everyone for your varied and informative replies. Only CH folks can really understand. So true about the beast taking the back door around whichever drug/treatment we find. Here's the BIG NEWS: the nasal spray/red pepper treatment works for us. I want to shout it from rooftops: USE SINUSBUSTER! I only ordered it out of sheer desparation, thinking that okay, we've already spent 1500 since 1/1/04 on pharmaceuticals, why not? At least this stuff has a money back guaranty! The beast has been subdued. Still definetly in the cycle though - he scratches at the door, but can't get thru. a Bonus, I tried it yesterday for my migraine and it works on that too! In seconds. A tip: it does burn just like chinese hot mustard but only for 2 seconds. Don't fight the burn, keep breathing thru your nose. Keep calm. Your body wants to freak out when it feels the initial bite but just keep breathing. Can't convey how great it feels! You guys are the best, thanks again for sharing your experiences and thoughts. It means so much during these cycles. Okay gotta go!
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miapet
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Re: 8 weeks in hell
« Reply #24 on: Mar 6th, 2004, 12:57pm » |
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where did you order it?
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