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Title: Melatonine users please reply on this one Post by HannahFroukje on Nov 21st, 2003, 7:37am Hi guys, An update from us, still in cycle (hubby, not me). We have tried magnesium for some days, first together with homeopathics, then only magnesium. This didn't seem to work, it looked like it worked together with the homeopathic thing, so tried that again, unclear result this time. Tried other stuff, no luck so far. I am trying to find a new remedy that will work if only temporarily, and if only just a bit to buy us time inbetween injections, because .... NOW WE'RE FACING A WEEKEND WITH NOT ENOUGH INJECTIONS. Doctor is making more and more problems about how much Jos is using, so he cut us down. Horror, big horror. If I don't find something that will give us a few hours here and there there will be 9's and 10's we'll have to sit out, he will go mad, I will go upset, and he will nearly die from pain. I've checked the Dutch melatonine, and it only has 0,1 mg per tablet! Asked why that was, answer: if you need more, go to your doc. So we did (again). Unfortunately just a wee bit late, and doc wouldn't see him anymore. Big discussion, no use, got 16 injections (which probably will NOT be in stock, so we'll have to go to 4 pharmacies to get them together, will take us half a day, GRRRRRR). So on MONDAY we'll see the doc about prescribing melatonine. Which he probably will NOT know for clusterheadache, and I wonder if he will go along with it. So my question is: If you've tried melatonine and it helped you, PLEASE put it down here in really short, how much you used and WHAT IT DID. Don't forget to mention how bad it was before the melatonine. I can take it along to our doctor and try to convince him with it. Also if you had any side effects from it, I would like to know. Please help out. I really need the info. |
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Title: Re: Melatonine users please reply on this one Post by Paigelle on Nov 21st, 2003, 7:46am Melatonin didn't appear to work for me, I only took 6mg. But here we can buy Melatonin over the counter and in 3mg pills. You should speak with Thomas, he has had good results with the Melatonin and magnesium together. |
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Title: Re: Melatonine users please reply on this one Post by thomas on Nov 21st, 2003, 8:29am This is what worked for me; 20min very hot steamy shower 1hour before bed, 3mg of melatonin and 2mg of time release melatonin after the shower, 20mg of prozac and 250 mg of magnesium upon waking. Hope this helps. |
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Title: Re: Melatonine users please reply on this one Post by J.ten_Dam on Nov 21st, 2003, 10:04am Hi Froukje, how manny injections dose hubby use per day? A suggestion, when you ask for the next prescription also ask for a rezerve one in case of emergencies. I always have an extra prescription in my pers incase I nead more than I had anticipated. Wish you both a lot of strength. By the way there is a meeting in Neuwegijn tomorrow you can read about it at http://groups.msn.com/clusterhoofdpijn/general.msnw?action=get_threads under titel jaarvergadering Nieuegijn Keep us informed of how things go doi Joke |
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Title: Re: Melatonine users please reply on this one Post by HannahFroukje on Nov 21st, 2003, 10:10am Thanks for reactions so far. I'm hoping on some more. Jos uses sometimes up to 8 injections a day, when he's reallly bad. I understand that his doctor is being careful, but there's really not much else we can do. We tried everything we heard and knew off, like eating ginger, eating peppers, taking magnesium, ehm ... well, just about anything, and he's been prescribed a lot of medicines, but only imigran/imitrex works, and only injections. BUT, ... I just went to the pharmacy, all buckled up for a big discussion, and a new woman took my recipee and gave me a bag with 20 (20????) injections of imigran. We had struggled to get 16 with the docter, and he agreed to 8, and another 8 tomorrow. I think this woman didn't really know what it is about, but hey , I thought I might as well take'm. In the meantime I still hope I can find something that can relieve temporarily, if only to save some injections, which are not healthy at all ofcourse. Greetings, Froukje PS checked out the site but we are not able to go now. |
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Title: Re: Melatonine users please reply on this one Post by thomas on Nov 21st, 2003, 10:13am Hannah, check out the imitrex tip on the left - that might help get more bang for the buck. |
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Title: Re: Melatonine users please reply on this one Post by Jayne on Nov 21st, 2003, 5:47pm Yeah hannah You can make one injection last for three headaches!!!!!!!!!!!!! http://www.clusterheadaches.com/imitrex.html |
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Title: Re: Melatonine users please reply on this one Post by Opus on Nov 21st, 2003, 10:20pm I'm taking melatonon and it is a ballencing act for me, too little and it does nothing, to much and AI am so tired I can't move the next day. I have sleep apnea which doesn't help. I'm going up to 9mg tonight, I got 1 mg pills so I can figure out what my dose has to be. Today was my first three attack day in a while so it don't look good. E-mail me for a hollistic abortive that works for me. man I've got to get spell check on this puter. Opus/Paul |
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Title: Re: Melatonine users please reply on this one Post by Pinkfloyd on Nov 22nd, 2003, 1:26am I used 9mg at bedtime and it did help with the night time attacks. Some people don't see results until they reach 12mg. Adding dosages of between 200 and 400mg of magnesium and vitamin b2 also helped a little. These take longer to begin working (weeks) but can help. Be sure to add calcium to your diet if you add magnesium. "Melatonin And Cluster Headaches" In this study, 10 mg of melatonin was administered to half of 20 cluster-headache patients in a double-blind controlled study that lasted 14 days. Headache frequency was significantly reduced in the melatonin treatment group. Five of 10 people in the melatonin group reported that their attack frequency declined after only 30-35 days of treatment. No patient in the placebo group responded." Caphalalgia (Vol 16, Issue 7 1996) I don't know if Imitrex is available in vials in your country but you might want to ask. Much easier to lower the dose from what is considered a migraine dose (6mg) to a cluster dose which is 2-3 mg. If this doesn't work in getting your doc to help.....tell him you're considering the following..... www.clusterbusters.com and see what he says. good luck PF |
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Title: Re: Melatonine users please reply on this one Post by 12gagueblast on Nov 22nd, 2003, 2:03am Hanna, |
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Title: Re: Melatonine users please reply on this one Post by 12gagueblast on Nov 22nd, 2003, 2:09am sorry hanna im a moron i hit enter a bit too early. i think the key here is to try only one thing and give it time to work, and if you find it is working do not change anything else for a bit. then you can reduce other meds / homeopaths or what ever. i get in a hurry too but i usully go at least a week when i change one thing. then wait for the weekend when i dont have to work to add or subtract another. i think if the changes are more frequent or if you change more than one thing at once you cant tell what is doing what and can get things even more out of wack. im not trying to be critical i can imagine having to be in my wifes shoes and be a supporter it has to be terrible but i think the key is to go slow with one change at a time. hope this helps and good luck. |
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Title: Re: Melatonine users please reply on this one Post by BlueMeanie on Nov 22nd, 2003, 4:29am Wow. 8 injections a day ! My doc only allows me 8 injections a month. I open them up and divide them into 3 ch for each injection. The rest of the time a suffer. Never tried Melatonine. Post back if it works. ::) [smiley=laugh.gif] |
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Title: Re: Melatonine users please reply on this one Post by HannahFroukje on Nov 22nd, 2003, 8:13am Yes it's way too much, I know he knows, we both know. I've talked to him 4 times about cutting the injection in half, but he doesn't dare to alter the injection, he fears half a dose will not help (well, at least I tried talk to him about this .... [smiley=huh.gif]), with him it takes from 8 to sometimes 20 and seldom up to 40 minutes before it starts working (the imitrex) on a full dose. Stuff is getting pretty bad here ... don't really know what to do or what to try. He's beginning to talk about giving up and says he can't go on like this, he's been on straight scale 10's once every three hours day and night for about two days now and already he's so exhausted, he falls alsleep in his chair, sitting up. And he asks me if I could not come up with some other remedy that will buy him some time, but I'm clean out of good ideas. The last day we tried a few more remedies, but I already covered the likely ones ... and am reaching the point of "guessing" or you might say "trial and error" and we are having no results on the last ones. He's been on a few food-supplements too, including magnesium and a low dose of melatonine (the one you can still buy at the drugstore, which is 0,1 mg a tablet), but they don't seem to help either. Owfff this weekend is really bad so far ::) ::) ::) |
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Title: Re: Melatonine users please reply on this one Post by Opus on Nov 22nd, 2003, 8:37am Hannah, Have you tried these, No med treatments (http://www.clusterheadaches.org/resources/non_script_treat.htm) Opus/Paul |
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Title: Re: Melatonine users please reply on this one Post by HannahFroukje on Nov 22nd, 2003, 10:51am Here's what I tried (not myself, on him I mean). As I write it down, it's quite a bit, but hey, you have to do something when you've got nothing BETTER to do, right? * Diet: no sugar no starch no pepper no spices no nothin'. Didn't help, but we're still on it, just in case. * Ice, we do that during every attack, because while waiting for the imitrex to hit, it becomes unbearable on him, ice cools a little but just a LITTLE. * Oxygen: did help on the mild attacks, but increases the pain he has in one side of his nose, which makes the headache comes back. He stopped it when he got heavier attacks, then it started to work the wrong way, giving him terrible stitches in his head and nose. * Water, drinking water every half hour. Didn't help a bit, but still doing that. * Blue cheese & vinigar? Even I could not think off that, will try it. * Grape juice *& gingerale. We tried ginger which seems to help for some, didn't work for us. Grape juice we didn't try. * St Johnsworth, yes tried that. Didn't help. * Dramamine, not available in the NL, I think. I heard of it, but never seen it here. Jos does also have attacks during day, not only in REM-sleep. * Benadryl, I'm sure not available on the free market here. * Mushrooms: he's not so keen on this one. * Massage: yes, does relieve a BIT, but just 2% no more. * REflexology, did try, relieves sometimes 10% , most of the times 0% * Feverfew, tried it in last cycle, din't help. * Exercise: he's too feeble to walk now, it's more stumblin ' then walking he does now, it sound a bit harsh to suggest he should take a walk now. * Hot sauce: another one we didn't try, but we did try ginger. * Bio feedback, well he's become an expert on this, we're in this together, I am sitting beside of him telling him he's doing great, and he's telling himself he's doing great, that's the only way to endure it so it seems. But it won't take the attack itsself away, and this can go on for two or three hours (and then the next will hit, so .....). Now he's getting weaker by the pain and exhaustion it doesn't work anymore, he gets mad pretty soon and starts yelling and running around, so he uses imitrex every time now. He can't bear it no more. * Candida yes have thought of that, I am not sure if it plays a role in his case. I could look into that. He does have a lot of sinus trouble, but its been years since he took antibiotics of any kind or other medicine. But it's worth looking at. * phenergran, I'm not sure what this is? * The apple, will try that for sure. * Rubbing his spine (upper part) does relieve a little but it has to be a very HARD rythmic rub, you all should come down here and watch my biceps, they have become quite impressive these last 6 weeks! ;;D. I have to rub a specific part of his back and shoulder with all my power and even then it's not quite hard enough. I will drag myself to the supermarket and get some: BLUE CHEESE, VINEGAR, GINGER ALE, GRAPE JUICE ... and a couple of mushrooms. Hee hee, just kidding ... am I laughing? No I'm not laughing. I'm getting desperate. DAMN THIS, three days ago we were doing so good, and now it's all back to the bad stuff again I HAVE to find something to relieve, otherwise it will kill him or he will just get a heart attack of the imitrex. hey, thanks for the tips, will try those few I didn't try before. |
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Title: Re: Melatonine users please reply on this one Post by HannahFroukje on Nov 22nd, 2003, 12:01pm EDIT 1: .... did my "cluster shopping" just now, that was the strangest blend of shopping I ever had in my cart. Couldn't find ginger ale, guess they were out of it. So now it's waiting for the next one to arrive and then I'll start popping in blue cheese, vinegar, peppersauce, ginger ale, oh well, if I just throw it all in together would it help better? Am I laughing ? Nope ... I guess this is all making me pretty cynical. 0000000000000000000000000000000000000000 EDIT 2: it's 20.05 now, his last attack right on schedual. Tried the vinnegar and blue cheese, first one didn't help so tried it TWICE, until he said the taste was making him feel nauseaus, and attack still came through and FAST. He wanted to try without imitrex, and had asked me to try and keep him from injecting. So that;s what I did but it almost broke my heart to see him in such pain. He was still nauseaus so he had to through up a couple a' times. And that 's NOT what you want to do when you're having CH, to have to bend over and throw up. He nearly passed out and went into spasms, almost choked. It went on for more then TWO HOURS, I've been rubbing his back vigorously for the first hour, then pulled out some oil and tried to massage his back. It would just NOT subside, it went down slightly then came back again. I tried something else homeopathic, don't know if it did something, didn't really look like it though it seemed to help sooth it down (but could have been wishful thinking too). Ohmygod I do NOT know how to go on like this. Eventually he fell asleep while he was still in pain, I had brought him some pillows to sit up, but his head hurt so much he couldn't rest it agains the pillow at first . And now I'm sitting here in the dark wondering what to do next. If hes UNlucky, the next one will be knocking on the door within 45 minutes. So much for the vinnegar [smiley=huh.gif]. Thanks for the tip anyway, Imean it, I'll try anything, because this is hell, real hell. It could have helped you know but I feel as if this pain is too fast and too intense for something like this to work. Well, next thing we'll try is the peppersauce but if it don't work fast, he has to use imitrex. He can't do this without imitrex, either he will be nearly unconscious after the attack or he is having it, one of both. |
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Title: Got PubMed? Post by floridian on Nov 22nd, 2003, 9:17pm If you haven't already done this, go to: http://www.ncbi.nlm.nih.gov/PubMed/ type in "cluster headache melatonin" (dont need the quotes - just put it in the search box). Hit the enter key. 25 links to articles should appear. Print out the list of the articles, along with some of the article abstracts themselves to take to your doctor. Good Luck. |
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Title: Re: Melatonine users please reply on this one Post by BarbaraD on Nov 22nd, 2003, 11:40pm Started on the melatonin and magnesium tonight. My melatonin bottle says 300mcg and the magnesium is 400mg with 10mg of Zinc. Hope the stuff works. Seems like I did the melatonin once before and it helped. Don't remember the dosage tho. Sorry. MIX the grape juice and ginger ale 1/2 and 1/2. It's helped a few. Tastes pretty good too. Food has never been a trigger for me.. Only Beer (other alcohol is ok). You might try Valerian Root. It relaxes you to the point that you don't really care what happens. But it smells horrible (like dirty gym socks). It beats valium all together and you can get it at the health food store. Hope something starts working soon for you. Read the archives... there's some stuff on melatonin there - where it did work. This stuff is making me sleepy now, so I'm going to bed now. I'm OLD and need my rest (hopefully). BTW, I'm chronic, so any sleep I get is great. I cherish each night without a wake up call from Mr. Demon. Hugs BD |
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Title: Re: Melatonine users please reply on this one Post by Pinkfloyd on Nov 23rd, 2003, 1:06am on 11/22/03 at 12:01:23, HannahFroukje wrote:
1. I've been through cycles like this before. I survived, along with my family, but it wasn't easy. I'm very sorry you're all going through this. 2. How's the weather there this time of year? I'm not asking because I would like to visit (although I really would love to see your country, for several reasons), but because if it is getting cold....it does help quite a few people to walk around outside and breath in the cold air during the attack. The hell with the neighbors. 3. With a cycle this bad, I hate to say it but most of the non-pharmaceuticals won't have much of an effect, if any, at least in the short term. I do understand the necessity though, of not giving up hope of finding SOMETHING that will help. Even if its one of those things that works for a week and then stops working To not lose hope, the journey is as important as the destination. That said...as much as I hate the stuff, I would suggest asking the doc for a dosepack of prednisone if he hasn't already tried it or hasn't used it very recently. A cycle like this would probably require at least a dose of 40mg a day, minimum to start. 4. There is some early evidence that the Imitrex may be adding to the problem. I know that its pretty much "who cares if it takes away THIS pain" but it should be remembered and considered. 5. If *I* lived that close to Amsterdam.....I know exactly where I'd be heading right now. I don't know if the shrooms are legal in the entire country but.... It was a cycle exactly like this that finally convinced ME to try them. All that Imitrex in his system may be a problem, and the detoxing prior to and afterwards may be one reason he isn't too keen on the idea. 6. If he (or you) would like to discuss this, email me and/or send a phone number and I'd be happy to call. whatever you all decide, best of luck, PF NL isn't a toll call from Illinois is it? ;) |
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Title: Re: Melatonine users please reply on this one Post by HannahFroukje on Nov 23rd, 2003, 2:58am (for those who are not in favour of homeopathy, just skip this one or you'll be annoyed with me and my constant attempts to do something with it). Thanks for dropping a line ... God I really need that now, I'm sick with worries. PinkFloyd, the weather is fine here, a bit rainy and cloudy but that's "fine" here! Whenever you wanna visit, you're always welcome in our home, we live an hour from Amsterdam, the well-known "mushroom"-city or any other drug you might wanna buy to live on or die on. We just had a night from hell. Jos had some kind of attack that would not subside and left him with a pounding headache. The second attack never really arrive but he woke up though (he had fallen asleep still in pain). Tried hot showering, YES, tried walking outside for an hour which helped to take his focus from the pain but not for the rest. Then I began to see some similarities between the last times something homeopathic worked and now. He had the same "prolonged attack"-kind of thing, the same headache, vomiting (he usually never vomits, GOOD stomach this guy), and the fact that the second and third attack did never arrive but still a pounding headache. If it were so we would be in for a rough night, the first part is the hardest to get through, lots of pain and now not even the possibility to use imitrex (no use). To cut this story short: he had lots of pain from 17.30 when the attack started (and then I gave him the new homeopathic) untill 05.00 in the morning then he fell asleep, at 08.00 o'clock he woke up a little and the worse pain in his head had finally gone away. No attacks inbetween. This is a standard pattern when a remedy works, but believe me you are NOT glad these first 12 hours, totally NOT. He's still sleeping now. No use to hang out the flag, I've seen this before and usually the pattern is: * One really BAD BAD BAD night * A good day * A good night * Everything comes back, same remedy doesn't do shit and will only leave you frustrated even more. Pinkfloyd I agree with you he should be on med's now. I pleaded to him over and over again that doctors these days are NOT out to kill you, that I will go with him, but he does not want to be on med's, he doesn't trust it anymore since it nearly killed him twice (when he was in hospital). He wants to try the melatonine because it sounds reasonably safe, but even the paddo's (mushies) go to far for him. So that's why he chooses homeopathics, and I'm not happy to be the one who has to give them to him. Because when stuff gets bad like tonight, guess who takes the blame .... :-[ :-[ :-[, you can NEVER predict what happens with homeopathy. I am aware of the imitrex influencing the number of attacks and severity of them but thanks for warning. I'll email you and translate your email to Jos. Perhaps your story can convince him about the mushies. Did they help for you? BarbaraD good luck on the melatonine!!! EDIT !!! Still going strong. No attacks, it's been 27 hours without attacks now. OK, he has been pretty bad but he's feeling okay now. We hardly dare going into the night, scared that the beast will wake us up again..... Now we can't help hoping it will stay away, but we would almost say we know better then that by experience! EDIT 2: yep and it's back. 31 hours this time. Then BANG! |
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