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Title: 8 weeks in hell Post by porkchop1 on Feb 29th, 2004, 7:41am 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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Title: Re: 8 weeks in hell Post by Jimmy_B on Feb 29th, 2004, 9:56am 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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Title: Re: 8 weeks in hell Post by Prense on Feb 29th, 2004, 10:13am on 02/29/04 at 09:56:38, Jimmy_B wrote:
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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Title: Re: 8 weeks in hell Post by porkchop1 on Feb 29th, 2004, 2:22pm 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! :P wish us luck. |
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Title: Re: 8 weeks in hell Post by 1MajorPain on Feb 29th, 2004, 2:26pm 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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Title: Re: 8 weeks in hell Post by bamjd on Feb 29th, 2004, 2:41pm 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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Title: Re: 8 weeks in hell Post by pubgirl on Feb 29th, 2004, 3:22pm 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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Title: Re: 8 weeks in hell Post by kissmyglass on Feb 29th, 2004, 4:40pm 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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Title: Re: 8 weeks in hell Post by Giovanni on Feb 29th, 2004, 4:43pm 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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Title: Re: 8 weeks in hell Post by Scooter on Feb 29th, 2004, 6:25pm 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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Title: Re: 8 weeks in hell Post by 9erfan on Feb 29th, 2004, 7:46pm CLUSTERBUSTERS!!!!!!!!!!!!!!! |
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Title: Re: 8 weeks in hell Post by FZfan on Feb 29th, 2004, 11:39pm 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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Title: Re: 8 weeks in hell Post by Prense on Mar 1st, 2004, 1:49am on 02/29/04 at 23:39:06, FZfan 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! 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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Title: Re: 8 weeks in hell Post by randal on Mar 1st, 2004, 9:04am 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. : :o :o |
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Title: Re: 8 weeks in hell Post by Charlie on Mar 1st, 2004, 6:11pm 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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Title: Re: 8 weeks in hell Post by Lizzie2 on Mar 1st, 2004, 6:17pm on 03/01/04 at 18:11:07, Charlie wrote:
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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Title: Re: 8 weeks in hell Post by FZfan on Mar 1st, 2004, 6:30pm on 03/01/04 at 01:49:12, Prense wrote:
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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Title: Re: 8 weeks in hell Post by Prense on Mar 1st, 2004, 6:40pm on 03/01/04 at 18:30:22, FZfan wrote:
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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Title: Re: 8 weeks in hell Post by FZfan on Mar 1st, 2004, 6:54pm 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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Title: Re: 8 weeks in hell Post by UN_SOLVED on Mar 1st, 2004, 7:12pm 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. UNSOLVED |
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Title: Re: 8 weeks in hell Post by Lizzie2 on Mar 1st, 2004, 7:38pm 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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Title: Re: 8 weeks in hell Post by BlueMeanie on Mar 1st, 2004, 9:42pm 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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Title: Re: 8 weeks in hell Post by Lizzie2 on Mar 1st, 2004, 9:53pm 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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Title: Re: 8 weeks in hell OVER!!! Post by porkchop1 on Mar 6th, 2004, 6:48am :D 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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Title: Re: 8 weeks in hell Post by miapet on Mar 6th, 2004, 12:57pm where did you order it? |
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Title: Re: 8 weeks in hell Post by t_h_b on Mar 6th, 2004, 1:43pm on 02/29/04 at 07:41:07, porkchop1 wrote:
Let's see, "Wayne" confuses clusters with migraines, too. Why does your sufferer need a doctor or any medication or treatment other than the pepper spray that's been 100% effective for seven days"? |
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Title: Re: 8 weeks in hell Post by porkchop1 on Mar 7th, 2004, 7:08am I actually found the link through this website, believe it or not! It's something like sinusbuster.org, or .com. I wish you luck my friend -I won't lie to you - it is uncomfortable the first few times, but a small trade off. we like this stuff because it has no side effects unlike all the other pharmaceuticals we have tried. Still in active cycle - okay, so the guy is a sleaze bag for the language in his advertisement (cures 100% of ch, etc., that everyone here is up in arms about - they have a point about that) it's not like we've never been lied to before! It may not do anything for you. But our experience is that it aborts and prevents the CH's. Still in the cycle. It's only been 8 days. I am hopeful. Probably deluded, but hopeful. Hey, I gotta cling to something! Also in this new book I got they discuss natural supplements - I am looking into same and will post our experiences with those. Godspeed! |
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Title: Re: 8 weeks in hell Post by porkchop1 on Mar 7th, 2004, 7:39am [i]Let's see, "Wayne" confuses clusters with migraines, too. Why does your sufferer need a doctor or any medication or treatment other than the pepper spray that's been 100% effective for seven days"? [/i]you misinterpret my message. I AM NOT CONFUSED ABOUT MIGRAINES V. CH - the quotes are used to show that OTHERS don't get it, okay? THEY call CH's migraines, NOT ME. And AT THIS MOMENT my ch sufferer does NOT need any other meds or treatment. AT THIS MOMENT. Instead of dismissing it because you are mad at the language of the advertising, try it! "wayne" or whoever the hell he is (if he even exists) is not the only person on the face of the planet who is using this treatment. SO DON'T USE HIS PRODUCT! You can mix it up yourself for virtually no cost. the ONLY reason for ordering it from his co. (or whereever) is that it's ready to go and MOST people who are actually in pain and actually WANT relief find it easier to just buy it premade. I am not at all interested in debating you about the fine points of language in this guy's advertisment - which I don't agree with either. IF you bothered to read my other posts, you will clearly see that we are open to ANYTHING that works. So far as WHY DOES MY CH SUFFERER NEED ANYTHING ELSE IF IT'S 100 % EFFECTIVE? How long have you had ch's my friend? Don't you realize that in 5 minutes this stuff could likewise quit working for him, just like EVERY OTHER THING WE HAVE TRIED? Although right now all I can tell you is that he's not taking anything else and the spray, alone, is working. You know, I'm tired of being attacked for simply relaying our experience with this particular product. I don't promise that it will work for you, or joe smith, or sally sue, so stop the nonsense already. I'm here for answers, not my dick is bigger than yours posts. Please. DO YOU HAVE ANY SOLUTIONS OR IDEAS THAT MAY HELP? THAT YOU WOULD LIKE TO SHARE? hmmmmnn no time for solutions...., just posting and RUNNING. |
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Title: Re: 8 weeks in hell Post by Kevin_M on Mar 7th, 2004, 7:40am on 03/07/04 at 07:08:12, porkchop1 wrote:
If you were to reiterate that claim, post it in bold type for us, making sure we are aware. Would that not make you complicit, and in complicity with that sleeze bag. Here is your quote from general message board: Since my CH sufferer began using this product 7 days ago it's the ONLY thing that has completely (YES, READ, 100% JUST LIKE IT SAYS ON THE AD) cured HIS headaches Would this not make you a sleezier bag? Are you saying you are lying to us too? Kevin M |
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Title: Re: 8 weeks in hell Post by porkchop1 on Mar 7th, 2004, 7:49am Kevin, the thing is... it has cured them 100%.. for now. you know, that name calling is just so.... 1st grade... That's right! It does work for him 100% ! so what's the problem? |
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Title: Re: 8 weeks in hell Post by Kevin_M on Mar 7th, 2004, 7:55am on 03/07/04 at 07:39:25, porkchop1 wrote:
And so here you are again pushing what you said was a sleezebag lie (again, in bold type). Are you going for sleeziest bag? Are you telling another lie? You are confirming your complicity. Kevin M |
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Title: Re: 8 weeks in hell Post by Kevin_M on Mar 7th, 2004, 8:01am on 03/07/04 at 07:49:22, porkchop1 wrote:
Oh, I am sorry. You were the one who used that term for the person who claimed it was 100% effective and was lying about it. I am only using your word for a person who would do such things. And here you are reiterating those very same claims TWICE more. You had a term for someone who made that claim once, it was sleezebag. I am only furthering your claim. A person who would make the same claim, after it is known the claim is a lie and the person who said it a (your term) sleezebag, would be sleezier. And a person who would do that again, sleeziest. Do you have more words I can learn? Kevin M |
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Title: Re: 8 weeks in hell Post by porkchop1 on Mar 7th, 2004, 8:08am yawn... again with the name calling. So pedestrian... If I am a sleaze bag for trying to help others, I GLADLY accept. Zippy banter aside, still, you offer NOTHING whatsoever in the way of assistance. So, what works for YOU? do you have any actual useful information or remedies that have helped you? Again, I ask: HAVE YOU ACTUALLY TRIED THIS REMEDY? How can you possibly speak of it with such authority otherwise? |
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Title: Re: 8 weeks in hell Post by Kevin_M on Mar 7th, 2004, 8:15am on 03/07/04 at 08:08:50, porkchop1 wrote:
I think you use appropriate words. yawn Kevin M |
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Title: Re: 8 weeks in hell Post by Kevin_M on Mar 7th, 2004, 8:28am on 03/07/04 at 08:08:50, porkchop1 wrote:
You are apparently not in any need of assistance, you are doing a good enough job at being a sleezebag. No, I will not assist you with that. getting sleepy...yawn. Kevin M |
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Title: Re: 8 weeks in hell Post by porkchop1 on Mar 7th, 2004, 8:57am Kevin, I wish you the best. You seem too angry or to closed off to be of any assistance. That's cool. We have all been there. As linguistically interesting as they are, it's too tedious to read thru the insults only to find, that again, you refuse to answer me. I can see that at least right now, you are unable or unwilling to do anything else. It's all very impressive, but....yawn...zzzz....see, at least we have something in common. If you would like at some point to share your experiences and your treatment ideas, I would still welcome them. Knowledge is power, as they say. Take care of yourself. |
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Title: Re: 8 weeks in hell Post by jonny on Mar 7th, 2004, 11:10am on 03/07/04 at 09:39:19, wsnyder wrote:
WOW....your first post and your buying....hello troll...LMMFAO You guys are way to easy to spot.....LOL ;;D...and you even link it in your post....WAY to easy!!! .............................jonny |
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Title: Re: 8 weeks in hell Post by wsnyder on Mar 7th, 2004, 11:40am I admit it, it is my first post. However I have been registered here for a couple, or more, years and, I think, just coming down from another bout ... and I might add a extremely bad one at that. (I am just ending week 14.) There isn't much discussed here that I haven't tried. I have no fresh iinsights. I do know one thing for sure about these CH's: I know everything about them and I know absolutely nothing. |
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Title: Re: 8 weeks in hell Post by wsnyder on Mar 7th, 2004, 11:48am Hey ... I'm NOT pushing the pepper stuff. NOT AT ALL! Somebody posted a message asking where to find it ... so I responded. Currently I use O2, Zomig, Verapamil, and when I have a really severe ramp-up I chill my body to redirect blood flow. |
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Title: Re: 8 weeks in hell Post by Kevin_M on Mar 7th, 2004, 6:13pm on 03/07/04 at 08:57:30, porkchop1 wrote:
If you wish to know of what assistance I may be, I've only got a little over 300 posts, please feel free to read through them. Again, you need no assistance at the folly you ply. We have nothing in common except for the word common. You are an admitted common sleezebag and common liar. I am a common CH sufferer. Shall I reprint your claims of 100% effective, which you have said are remarks made from a sleezebag and a person who is lying. Yes, and my knowledge of you is a power. The power to know the difference between person's who don't need assistance, going by your 100% effective claim, and those who do. So, if you wish for me to offer my assistance to you, you now know why you don't need MY input, you are one who needs no assistance, and why it will not be offered to you. I hope this was also linguistically interesting enough for you and I definitely hope it will not be too tedious for you to read because I above all, wish to make a message very clear to you. If you wish to continue with me, perhaps the message can be gotten across with more redundancy, or, I can be make this message clearer to you. I taught school at one time and am used to communicating with those grades K - 12. I do not feel the need to regrade your posts, your grade will still stand. I would suggest an alternative education elsewhere. The education I may give you here may be more challenging yet, should you wish to attend here. Or have you already been expelled from the migraine and sinus boards too. If you should choose to come-a-knocking at any school of hard knocks, don't be surprised at who is going to answer the door. Kevin M |
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Title: Re: 8 weeks in hell Post by pubgirl on Mar 7th, 2004, 6:21pm Mr Snyder You know everything about clusters? I envy your enyclopaedic understanding!. I thought I knew a lot, but went to a presentation today about clusters and learned more. Wendy |
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Title: hellweek Post by Mr.Happy on Mar 7th, 2004, 7:51pm Yo.....Brit..... If yer gonna quote and mock, do it in full. He said: Quote:
Made complete sense to me. It's spelled "encyclopaedic," too. Get it right. Get it? RJ |
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Title: Re: 8 weeks in hell Post by wsnyder on Mar 7th, 2004, 7:55pm Wendy, I said, "I know everything and I know nothing." It means that one minute I think that I am the guy in control and the next minute I know clearly that's foolishness. Sometimes I think I have a handle on what works best during a bout and then find, as usual, that it is all wishful thinking. I was just wording things differently. I don't know anymore than anyone else does for sure. I have learned a great deal from these message boards over the past few years and hope to continue to do so. I am trying to find a way to become a contributor - looks like I am not carrying that off very well. Bill (Snyder) |
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Title: Re: 8 weeks in hell Post by pubgirl on Mar 8th, 2004, 2:27am Sorry Bill It was late and I was v.tired. Missed the point you were making as you can tell! (and sorry about the spelling Randy, same reason for finger slipping) Bill, what is silly about my misunderstanding is I so agree with you! I was quite surprised that after all the reading I did, that a basic 3 hour presentation on CH for non-experts still throws up new info. Never too old or too arrogant to learn. W W |
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Title: Re: 8 weeks in hell Post by wsnyder on Mar 8th, 2004, 2:14pm W, Hey, no problem. I wasn't clear anyway. Bill |
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Title: Re: 8 weeks in hell Post by jonny on Mar 9th, 2004, 3:36pm on 03/07/04 at 11:40:35, wsnyder wrote:
Name: wsnyder Posts: 5 Position: New Board Newbie Date Registered: Feb 13th, 2004, 11:54pm |
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Title: Re: 8 weeks in hell Post by Tiannia on Mar 9th, 2004, 4:43pm Jonny? You are the one who absolutly has to have the last word right? I absolutly love reading your posts, because no matter how fucking shitty I feel (and today is pretty damn bad, my back is just really fucking killing me) you always make me smile and laugh. /huggs hun Hope you are doing good today. Tia |
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Title: Re: 8 weeks in hell Post by wsnyder on Mar 9th, 2004, 5:12pm I origionally registered with clusterheadaches.com in the Where We Live section in the summer of 2001. When I wrote my post the other day that was the timeline I had in mind not thnking that the date of my message board activation. I didn't understand that the message board was seen so separately. Please excuse my misunderstanding. |
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Title: Re: 8 weeks in hell Post by jonny on Mar 9th, 2004, 5:44pm Sounds reasonable to me...welcome aboard. ........................jonny |
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Title: Re: 8 weeks in hell Post by vig on Mar 15th, 2004, 10:55am 8 weeks in hell... hmmm look on the bright side. 44 weeks in heaven! |
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Title: Re: 8 weeks in hell Post by Tiannia on Mar 17th, 2004, 11:51pm on 03/15/04 at 10:55:05, vig wrote:
Now see Vig that is what I love about you. You always see things form a positive side. :-* Tiannia |
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Title: Re: 8 weeks in hell Post by Lizzie2 on Mar 18th, 2004, 12:09am on 03/15/04 at 10:55:05, vig wrote:
Love it, Vig!! haha :) Lizzie :) |
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