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Title: simple tricks and tips to endure Post by pike on Oct 2nd, 2006, 6:32pm Hi Clusterheads Very happy I found this site ! I hardly dare to say this here but I'm *not* a chronic with 5 KIP11 attacks every day. I feel very sorry for most of you. But there must be more people like me around, who have long PF periods, short cycles and attacks of appr. KIP 6 to 8. And I imagine us "softies" get diagnosed wrong more often... but as you may understand even a KIP8 is hard to explain to people .. I've been eating antibiotics for 15 years :-) During that time, I developed dosens of simple tricks and tips that make me endure an attack. In this forum here I read all about brain surgery and heavy medication, but very little about the practical things that keep you going during an attack. Cold showers, wet towels, black coffee, that kind of thing. Now that I know what this beast is most of my tricks even make medical sense. This is all so comforting! But some things I do still seem like superstition, and are not noted on owl-med et al. Wouldn't it be helpfull to make a list ? As a community effort ? I'll be adding if someone's interested... *-pike |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 2nd, 2006, 6:39pm Glad you found us, sorry you have to deal with the beast. I'm curious as to what you are taking so many antibiotics for? |
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Title: Re: simple tricks and tips to endure Post by Karla on Oct 2nd, 2006, 6:59pm check out http://www.clusterbusters.com/ |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 2nd, 2006, 7:28pm thanks, karla. i said "tip and tricks", not "trips and ticks" :-) very good site though. and yes may try. there's a good tea recipe on this site. in fact, one of my friends in need is Damiana. but I'm curious if that is superstition or science. it works for me - a bit. note Damiana is legal, even in the states. you can tea it or smoke it. http://www.erowid.org/herbs/damiana/ more tips and tricks ? *-pike |
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Title: Re: simple tricks and tips to endure Post by BB on Oct 2nd, 2006, 8:12pm Hello Pike, I am happy to hear that you have only short cycle, long remission and low kip hits! Great ! Enjoy ! and I pray that it will stay like that or get better for you. BTW, interesting plant , Damiana. Its not recommended for headaches though. How did you find out about it? and exactly how do you use it and what types of effects/side effects that you have personally experienced with it please? Thanks for the info. Take care and pf wishes to you. Annette |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 2nd, 2006, 11:10pm Hello Anette thanks for the kudos .. congratiulate me another time tho .. ouch I sometimes drink damiana as tea, or mix it in tea, for relaxation, which is how I found it. During an attack, I smoke it. No patience to make tea. I have a huge bag of pure damiana leaves here, very cheap. Don't buy it in a smart shop, that's heavily expensive and probably not pure. The taste is ok and its slightly relaxing. It also changes the quality of my sleep (and dream). Some people claim it has no effect at all but I can clearly sense it, so maybe you have to have -or develop- a sensitivity. Looking in my logs, a lot of my lesser attacks end with the word 'damiana'. not that they end the attack, but I take it at the end of an attack and it soothens. so .. science or superstition ? maybe the relaxing part has a positive effect on the pain; it takes off the agitation. but it also has some vascular effect -which is why it's classified as afrodisiac- which may have something to do with it. BTW, I never noticed anything erotic about it. sideeffects .. when testing it as a preventive, I drank damiana tea continuously. after a few days, I could feel my liver and stopped. I assume if you feel your liver you're *way* too far so that's a warning for all you expirimentals out there. *-pike |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 2nd, 2006, 11:22pm other tips ? simple ones please. I'll do one: rub tigerbalm in your neck, at the side of the attack use the heaviest balm you can find. and if you come across flying white peacock balm, send me a cradle :-) so .. superstition or science ? it may do something to the blood distribution to your head. it also opens your nose on that side, allowing for more oxygen. on the other hand some of these solubles (hydrocarbons?) might act as a trigger, says wikipedia. maybe you shouldn't just use any tigerbalm, but only the ones with good ingredients. plus if you climb into bed like that, it reminds you of being a little kid, and you fall asleep with the idea of your mum being around the corner :-) *-pike |
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Title: Re: simple tricks and tips to endure Post by kcopelin on Oct 3rd, 2006, 8:19am 1. A bag of frozen peas. That's simple enough. Problem: they get mushy after awhile then refreeze into one solid mass that is not helpful at all. 2. Prayer. Not necessarily in that order. PFDAN kathy |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 3rd, 2006, 9:51am Here: http://www.ouch-us.org/chgeneral/nonmed.htm There's lots of useful information contained in the buttons to the left. |
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Title: Re: simple tricks and tips to endure Post by clusternewbe on Oct 3rd, 2006, 10:08am Pike, I had been PF for exactly a year in August and I have only had one cycle in 2005. It only lasted 2 weeks and I experienced kip9 and 10'ds the entire time, now I'm having shadows and i'm not exactly sure if i'm in cycle because it seems like when i do have pain it's not like before, maybe a kip 2 or 3. I know theres different level of pain but I'm still new at this. So like you I have episodes and experience long periods of PF time. From what I've been reading we're lucky and I'm trying to love every moment of it. Good luck with your clusters and thanks for the post. I will find it helpful. Ash |
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Title: Re: simple tricks and tips to endure Post by BB on Oct 3rd, 2006, 10:26am on 10/02/06 at 23:10:32, pike wrote:
Hi Pike, Sorry but you got me all curious again :P , what do you mean by " feel the liver " ? How do you feel your liver and what does it feel like to you when you appears to have overdosed with the herbal tea ? Was there any warning of possible overdose on the products ? Bit concerned about the safety profile of this interesting plant , I must admit. Thank again for the info. Hope you dont mind me asking. Annette |
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Title: Re: simple tricks and tips to endure Post by wildhaus on Oct 3rd, 2006, 2:16pm Hi Pike I don’t know you and don’t know who you are…… I am very sorry you have to join us, But as a fellow newbie…… I would slow a bit….. We had a lot of “New comers” with (let me put it in a nice way) questionable ways or ideas I don’t know what is this thing you are promoting……Damiana….….. I would if I were you first look around and learn and gain from the vast amount of knowledge on this web site…… and only after realizing and understanding what was accumulated with time and pain I would hint that there might be something new! But to run and tell us you have the cure….. you must be joking……. Like I said I don’t know you, and I hope your intentions are genuine….. but if not…. damn your damania…… Michael |
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Title: Re: simple tricks and tips to endure Post by MJ on Oct 3rd, 2006, 10:13pm Quoted from Springboard, Nutrition notebook. "Damiana (Turnera Diffusa) "Description Damiana grows wild and is cultivated around the Gulf of Mexico, and in some South American countries. Damiana is heavily branched and reaches six and half feet in height. The stems are smooth, straight, and yellow or reddish-brown in color. Small, obovate leaves grow in clusters alternately along the stem; the upper surface of which are olive green with undersurfaces lightly covered with whitish hairs. The leaves have toothed margins, and small flowers grow in the upper leaf axils. The fruits are small capsules, slightly curved, with rough skin. The medicinal part is the leaves. CHEMICAL COMPOSITION Arbutin Cyanogenic Acid Glycosides Gonzalitosin-I Hexacosanol-I Hydrocyanic Acid Resins Sitosterol Tannic Acid Thymol Triacontane Volatile Oils * For definition of some of the above terms see the dictionary section of this book. NUTRIENT COMPOSITION Chloride Copper Potassium Sodium Sulfur PROPERTIES AND USES Aphrodisiac - any substance which arouses the sexual instinct. Diuretic - Diuretics form a class of drugs which increase the volume of urine produced by the kidneys. It can be used effectively to treat mild cases of edema when kidney function is good and when the underlying abnormality of cardiac function, capillary pressure, or salt retention is being corrected simultaneously. Diuretics are not an appropriate treatment for edema caused by inflammation of the kidneys, and are useless in cardiac edema associated with advanced kidney insufficiency. Emmenagogue - an agent which stimulate menstrual flow. Laxative - an agent which acts to loosen the bowels; it is therefore used to treat constipation. Laxatives may act by increasing peristalsis by irritating the intestinal mucosa, lubricating the intestinal walls, softening the bowel contents by increasing the amount of water in the intestines, and increasing the bulk of the bowel content. Stimulant - an agent that temporarily increases activity or physiological processes. Stimulants may be classified according to the organ upon which they act; for example, an intestinal stimulant is that which stimulates the intestines. Tonic - an agent which strengthens or tones. Damiana has stimulating properties and has been used for nervousness, weakness, and exhaustion. It has been recommended for increasing the sperm count in the male, strengthening the ovum in the female, and helping to balance hormones in women. Damiana is especially beneficial for revitalizing the system, and has been used as a mild tonic laxative for children. It has been said to one of the most popular and safest of plants claimed to restore the natural sexual capacities and functions. It was first used by the Mayans of Yucatan. They called it "mizib-coc," which means "plant for asthma." It was used for all pulmonary disorders, dizziness, vertigo, and as a general body cleanser. The active constituents in damiana are: 0.5 - 1.0% volatile oil from which thymol, a-copaene, o-cadinene, and calamene have been isolated; a brown amorphous substance; damianin; resins; and gum. TOXICITY FACTORS Damiana is low in toxicity factors, but because of irritant action on the genitourinary tract, it may aggravate preexisting urinary tract diseases. Caution needs to be taken in such cases. In the West Indies the tea is taken to discharge the placenta after childbirth. Therefore, it may be wise to restrict its use during pregnancy. DRUG PRECAUTIONS AND INTERACTIONS Known Interactions: None Possible Interactions: None Comments: In the absence of other hard data, it may still be assumed that observable interactions may occur between the many central nervous system drugs and the psychoactive principles in Damiana." ------------------------------------------------------------------------ |
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Title: Re: simple tricks and tips to endure Post by MJ on Oct 3rd, 2006, 10:28pm Damiani an even better site. http://www.rain-tree.com/damiana.htm Apparently the Damiani plant is used around the world for many different disorders, including nerve disorders and Headaches. Interesting plant Pike |
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Title: Re: simple tricks and tips to endure Post by BB on Oct 4th, 2006, 1:38am There are contraindications to the use of this plant in some people, for eg pregnant or breast feeding women and people with diabetes. It may interact with some medications. http://www.drugs.com/mtm/damiana.html Interesting plant with great potential, needs more studies and researches done to ascertain its effects and side effects though. Annette |
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Title: Re: simple tricks and tips to endure Post by Charlotte on Oct 4th, 2006, 9:47am A few years ago I used a blend of herbs that contained this, during menopause, and it did help with hot flashes, but not the cold sweats. I don't recall any headache relief from that blend, though. Charlotte |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 4th, 2006, 3:15pm Hi Guys pfew, lot of posts here about a single comment I made. Let me make 1 thing clear: I *know* from experience Damiana will *not* stop an attack. So much for promotion :) on 10/03/06 at 14:16:32, wildhaus wrote:
ho,ho, not promoting anything here. on 10/03/06 at 14:16:32, wildhaus wrote:
I have, and I'm happy I found it. but as I said I see too much heavy medications around and I'd like more simple tips. Tell me, wildhaus .. what do you *do* to bear the pain ? I really want to know. That's what I hoped this thread would be about. The frozen bag of beans sounds really good, thanks ! Quote:
i didnt deserve that ! please ... :'( *-pike |
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Title: Re: simple tricks and tips to endure Post by Charlotte on Oct 4th, 2006, 3:47pm I apologize, Pike. We tend to be protective. You're right, it was just a comment. Let's start over. :) Welcome aboard. Check out the tips to the left. Charlotte |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 4th, 2006, 5:12pm on 10/04/06 at 15:47:55, Charlotte wrote:
Thanks Charlotte. I had. ofcourse. Hey, I took the medication survey to my doctor :-) I found red bull on this forum and noticing it worked *instantly* - only the first time btw - decided to do the taurine, melatonin tour. And it has .. effect. My clock is all over the place now :-) But it least I have a handle and I owe it to this site. During years of ignorance, I found so many things to relieve myself .. I was wondering what other people had found. Ofcourse, they found meds. But apparently, they don't work 100% for everyone. So you still need relief. What do you do ? Headbanging is an option, but it's a victim-attitude, not a fighter-attitude, its an expression of helpless frustration. You need to endure the pain, not indulge in it. So ..anybody using a boxing ball ? What do you do ? *-pike |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 4th, 2006, 5:13pm Pike - did you read the link I posted above? There are lots of tips in there. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 4th, 2006, 5:17pm on 10/03/06 at 09:51:59, Margi wrote:
Great link ! Exactly what I was looking for. Blue cheese and vinegar ?? Grape juice and ginger ale ??? Great :-) Dont use Grape Juice with Verapimil, though. More tips ? I'll do one. Chew. Not chewing gum, thats too soft. An apple will do fine, for 5 minutes. Better chew on wood (like a stick of Liquorice) or even a piece of cloth. Dutch people can chew on DROP. Chewing just relieves the frustration, I guess... *-pike |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 4th, 2006, 5:18pm no, that's grapeFRUIT juice that interacts with verapamil. Grape juice is completely different. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 4th, 2006, 5:26pm on 10/04/06 at 17:18:02, Margi wrote:
oops, sorry. not a native speaker ( so what *is* grape juice ? oh, never mind, found it, .. ofcourse :-) ) *-pike |
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Title: Re: simple tricks and tips to endure Post by Jonny on Oct 4th, 2006, 6:28pm ::) |
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Title: Re: simple tricks and tips to endure Post by Karla on Oct 4th, 2006, 8:42pm Thanks BB for that info on Damiana. I have drug interaction according to that link you provided. I wont be trying that stuff any time soon. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 4th, 2006, 9:48pm Quote:
okay .. can confirm "a spoon full of peppersauce under the tongue" is an option. instant running nose. some relief. not a showstopper. how are you supposed to keep it there for 10 minutes while your eye is being torn out and you need to scream and run [smiley=huh.gif] I managed for 2 minutes. looking forward to the next expiriment :-/ *-pike |
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Title: Re: simple tricks and tips to endure Post by BB on Oct 5th, 2006, 2:30am Hello Pike, Its great that you have an open mind and like to try new, alternative things to help cope with a cluster attack. Personally I prefer to rely on reputable and reliable sources to make my informed decision on whether I would try something that can affect my health. JMHO. Best of luck to your quest and thank you so much for sharing your experience. Painfree wishes to you always. Annette |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 5th, 2006, 5:19am Hi Annette on 10/05/06 at 02:30:41, BB wrote:
Ofcourse you're completely right. Don't blink an eye without first speaking to your doctor. I made an appointment at the hospital .. in 3 weeks. It's ridiculous, I will call them again today, but I don't have much hope. When I made an appointment the last time, it was in 4 months. Long after my cycle. Welcome to holland. They know I'm a clusterhead .. they just don't realize. And after all, I only have 1 KIP 8 daily :-[ They prescribed verapamil the last time, and I have it now, but I dont want to take that because I think I have a heart issue (which they didn't check). And, I want them to prescribe an abortive *first*; I test it, if it works, we look for a preventive. In that order,as described here http://www.mhni.com/faqs_cluster.html#treatment Forgive me if I sound cynic, but I trust myself better then those doctors now. For the coming weeks, I have to rely on online sources, my own common sense, and speaking to my private doctor. Hence the open mind. med-owl is my main friend. Melatonin isn't really working like this, but I'm taking the dosage as described on the package, .3mg. The pills are .1 mg, so taking 1mg as med-owl describes is 10pills, and 9 mg would be 90 pills ! That is beyond my common sense, and I dont want to do it without talking to "reputable and reliable sources".. in 3 weeks .. for 20 minutes... *-pike PS. the damiana wasn't really a CH expiriment .. I had been using it already. |
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Title: sweatband hotwrap Post by pike on Oct 5th, 2006, 5:20am anyways, this thread is not about scary medication. it's about tips and tricks to endure, like a bag of frozen beans and prayer. I'm the hot water type, so I prefer to wear a sweatband, dump a handfull of cotton in hot water, put it in the temple, wrap the sweatband in front of it. This way I have a 'hot wrap' in front of one eye, and I still have both hands free. *-pike |
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Title: Re: simple tricks and tips to endure Post by BB on Oct 5th, 2006, 6:58am on 10/05/06 at 05:19:33, pike wrote:
Hi Pike, First of all, I am truly sorry to hear that you have so much problem with the doctors in Holland. I am surprised that they didnt prescribe you an abortive such as imitrex or oxgyen but gave you verapamil first, without checking your blood pressure and your heart. If you havent tried oxygen, please do. Its a very good abortive for so many and its very safe, good for your heart even. If you cant get medical grade oxygen, you can use welders oxygen, Jonny is an expert in it and he can help you with all the information you need. The clustermax mask can be ordered online. Oxygen is safe and cheap and is the first line abortive for cluster. Secondly you can try kudzu, there is a whole thread up the top about it. Then there is Taurine which is found in energy drink such as Red bull , you can buy taurine tablets from health food shop. Many people also find vitamins supplements helpful especially Magnesium. Another one to try is green tea, to be taken at the first sign of shadow can help also. Lastly please check the Melatonin bottle again. It should be 1 mg , not 0.1 mg. Most Melatonin tablets come in 1 mg or 3 mg. Therefore 9 mg is only 3 tablets of the 3mg or 9 tablets of the 1 mg, not 90 tablets. All of the above are not just old wives tales, they have been tried well and truly by many clusterheads and have found to be fairly effective. Obviously not all works the same for everyone, but you will have more chance of success with them than with tiger balms or peppersauce. Take care and let us know how you go please. Annette PS : and yes dont blink, you are speaking to one now ;) |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 5th, 2006, 7:44am Thanks Doc :-) just called the hospital again, but they will not make an exception in appointments except for - i dont know - she named a whole lot of 'serious' things. I am feeling very serious, but she literally said "just a headache" somewhere in her rant - excusez la mot - little frustrated here I am trying taurine already, again the official dose (2 tabs a day). the melatonine bottle really says .1mg, they are tinytiny tablets too; "Liberty, pure melatonine". http://www.liberty.nl/ ; http://www.melatonine.nl/ .. in dutch it reads "In holland dosages of 0.1mg are sold. it may be necessary to take more than 1 tablet .. ". But 90 seems a bit odd :-) There is an effect, but no real help. Will stop and try kudzu next. Stopping taurine means I can drink redbull again as an abortive, which helped, but I stopped, not wanting to od myself on taurine - it's a calciumblocker right ? I've been looking for an oxygenmask, actually praying the hospital would provide me one with the necessary instructions. I do need official prescription in holland which the private doctor can not give me. The dutch FDA claims it should only be sold by med. personal, but I know sportschools have them too. A friend of mine has welders gas, but my private doctor advised me not to try that. Your welders gas (in the states?) might be different than ours. If there is any polution in it, that would be very harmful, no ? Surely the fire dept has good o2, but I wouldn't make it there within the length of an attack. I've been to ER and they won't let me try anything unless the doctor has set out a therapy (or, unless I'm dying). I had a hard time finding the "clustermask" you all talk about. google doesnt do anything on that. please use the name clustermasx (if that is the one you mean): http://www.clustermasx.com . but it doesn't have the o2 itself, just the kit. Tell me, somebody, can I really really trust welders gas, out here, in europe, holland ? Should I ignore my private doctor ? In the meanwhile, things like a hot wraps and other old wives tales help ... thanks a ton! *pike |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 5th, 2006, 8:10am .1 mg? Dang I have a bottle of 5mg and take 3 a night in cycle. Might start scaling it back now that the cycle seems over...but I'll probably give it more time just to make sure. |
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Title: Re: simple tricks and tips to endure Post by kcopelin on Oct 5th, 2006, 8:20am Welding is welding no matter what side of the pond ya live on. Jonny can give a better answer than I, but here's my attempt. In order to get a flame with which to weld, you must have 100% O2. The O2 comes from the same source whether for welding or medical uses. The difference is in the tanks. Welding tanks are big and ugly and unglamorous ::) and the inside "could" be more yucky than the inside of a medical O2 tank. If you are worried about that-you can purchase a tank-on ebay for instance. Jonny can definitely tell ya how to adapt regulators, ect. You never answered why you have been eating antibiotics for 15 years. That really can't be good for you. Can you actually feel your liver? I mean, we really shouldn't be able to do that you know. Yikes! Melatonin-9 mg 30 minutes before bedtime-add in benadryl (antihistamine) if melatonin alone doesn't work. Both over the counter. Good sleep hygiene-same time to bed and rise each day-even the weekends. Uncooked rice in a nice soft flannel bag. you can heat it up in the microwave for a few seconds. Its warm and comforting for some. That's about all for now-gotta tell ya though, this community/family has been attacked at various times by folks demanding that they have a cure, or accusing us of not being helpful in spite of all attempts to understand and share information. One commonality is their vagueness in answering straight forward questions. Little red flags go up in some peoples mind (mine included) and we start wondering if this is a new troll (nasty beasts, those, just wanting to lie, create conflict and chaos). Non-trolls do not get defensive at statements like this. Trolls get really pissed off and usually start ranting and name-calling. Enjoy your pain free time! kathy |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 5th, 2006, 9:09am Thanks kathy .. uncooked rice in a flannel bag .. sounds good on 10/05/06 at 08:20:44, kcopelin wrote:
Might be. But I don't want to ignore my physician just because of some wwwboard. No offense intended, really, but if things go wrong, I can at least blow up his car :-) Quote:
Sorry, it seemed a bit offtopic. I've been diagnosed for sinusitus (and various *itus) for a long time. Even if there was no sign of infection, I got pills. Actually, I stopped eating them long ago, so it's less then 15 years, and as said, I have a huge pf cycle. The *itus diagnosis may not always have been wrong though. They where just not the source of the pain I was suffering, I know now. Quote:
Discussed that offlist (pm) with Anette. I'm not really sure, but it didn't feel good, no :-) nuff bout me now. Quote:
I've seen those. People claiming to have a continuous KIP 9 and stuff. On the other hand, I have to resist to exagarate too .. just out of frustration. And I am wondering what drives those trolls .. there must a problem, even if it's just psychic. I mean, what's the fun in that ? thanks for the tips ! any more ? *-pike |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 5th, 2006, 10:15am on 10/05/06 at 06:58:13, BB wrote:
While I agree that tiger balm isn't going to do much - the pepper sauce (or peppers themselves) do actually have some abortive properties because of the capascaicin (or however that's spelled). Mike's aborted a few attacks in early stages of cycle just by eating hot (jalapeno) peppers. Not necessarily a quack story, this one. Pike...it worries me that you've had so much antibiotic in your life - that can really mess you up. Many clusterheads here have also been diagnosed to have sinus infection. I'm glad you realize that's not the cause of your cluster, but antibiotics kill all the bacteria in your system, even the good stuff and you need that to maintain a healthy environment. Candida overgrowth can occur from overuse of antibiotic and, while this is a controversial theory here, there is some belief that this can launch a cluster cycle. A few years back, we did an online candida test (spit thread) and the sufferers here tested overwhelmingly to be positive for an overgrowth. A way to combat this overgrowth is by taking acidopholus pills to restore the friendly flora and fauna in your gut and to try to eat ....well, basically....nothing white (dairy, flour, sugar). Of course, that's nearly impossible to achieve, so the acidopholus supplements can really help to restore balance. If I were you, I'd maybe visit a naturopath and see if they will test you for candida overgrowth. No, it won't cure your cluster headaches, but you probably will feel a whole lot better if you can achieve a better balance. Just my two cents. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 5th, 2006, 10:55am on 10/05/06 at 10:15:40, Margi wrote:
Ouch .. you really hit the nail right on it's head there. I went to a medicinman (sorry about the pun) while I was waiting for the hospital the last cycle. She did some mysterious voodoo on me and concluded candida overgrowth, amongst others. I checked online and found it was like nearly incurable. I changed some habits - low on yeast, low on wheat, but I guessed that was all I could do. And besides, my cycle was over. That was already a surprise, because the only time an earinfection of mine was actually taken to the lab (nay, not in holland, in latvia) it appeared to be candida (up my ears, yes, not kidding. You can smell a yeast infection. It's not sour. Stinky ear. Yuk). Doctor said it might be from swimming water. Well, darn! Candida overgrowth is not something you can *heal*. You have to change your whole lifestyle. Thanks for the .. reminder .. darn .. will do some tests ... :o - pike PS. When I was looking into candida, I stopped drinking most alcohol except for wodka, because its made from potatoes. I remember seeing someone on this board saying the same .. alcohol was a trigger for his CH except for vodka. There may be some logic there ? |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 5th, 2006, 11:10am yeah, I'm not surprised, Pike about your overgrowth. I'm not sure about the vodka connection though. I do know, however, that sugar is a major culprit in encouraging candida growth so could it be that the other alcohols have a higher sugar content? Or yeast, maybe in the fermentation process? Dumb question I know but...isn't vodka fermented? Candida, even though it is very difficult to treat, isn't impossible. There are chemical meds you can take like Dilfulcan and Lamasil that will help to control it but, of course, they come with accompanying side effects. You do have to stay on them for a longer period but you really should supplement that treatment with a yeast free diet. There are lots of books written on this subject. I honestly don't know how candida overgrowth affects cluster headaches but I do find it startling about the high prevalence of it in this group. I still think there really is something to this theory. (although I do miss Ueli's wisdom around here, I'm glad he's not online right now to beat me up about this subject. :)) One of our psilocybin pioneers actually did the candida test here online and I think the phase was coined at the time "there's a fungus among us." Interesting how one type of fungus is detrimental (candida) yet another is so beneficial (mushroom), isn't it? Science is way cool. :) l |
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Title: Re: simple tricks and tips to endure Post by Linda_Howell on Oct 5th, 2006, 11:34am Pike, You said you don't trust Dr.s all that much and one of them has been giving you antibiotics for way too long when there was no sign of infection... Quote:
and then you say Quote:
in regards to the welders 02 question. Yes this is a www.board but the people here have spent a lot of time and research along with help from the medical community getting answers out for folks about things like this. I have small portable tanks for when I'm out AND I have a welders tank. There is no differance except the welders tank is cheaper to fill. Not trying to pick apart what you're saying, I just want you to be informed because 02 is a life-saver, it works, it's safe and it's cheap. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 5th, 2006, 11:55am Quote:
And I'm very very very grateful and trust you are right, i'm not even arguing against it .. but if my physician says no, and I do yes, where does that lead me ? then, I'm really on the loose. i'm trying to stay on track with my selfmedication here .. everyone is warning me, even on this forum, but I can't do nothing can i ... so I'm trying to get oxygen in a nice and legal way, like .. sportschools .. I dont know .. Quote:
yes, its my main goal too, but how to get there .. Margi, I remember seeing a link to the "results of the spit survey" - or something - on this site, but I cant find it anymore, do you have a link ? really curious thank you all for .. whatever .. the trouble .. the time :-) *-pike |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 5th, 2006, 1:06pm Yikes, Pike :) it would mean hours and hours of digging through the archives to find that thread .... I'm not even sure what year. I joined here on October 30, 1998 so it was....uh...after that. :-/ It was originated by Flash but I honestly can't remember the year, I'm sorry. Flash, if you're reading this thread, do you remember? Here's a link on how to do the spit test, though.... http://www.candidayeastinfection.com/spit_test.html yeast infection can be systemic and, before the naysayers get in on this - no, it's not only THERE that it happens. |
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Title: Re: simple tricks and tips to endure Post by seasonalboomer on Oct 5th, 2006, 1:10pm Here's all I could find on Candida...... Candida ( Tony Orlando and Dawn ) The stars won't come out if they know that you're about 'Cause they couldn't match the glow of your eyes And, oh, who am I ? Just an ordinary guy Tryin' hard to win me first prize Oh, my Candida We could make it together The further from here, girl, the better Where the air is fresh and clean Candida Just take my hand and I'll lead ya I promise life will be sweeter 'Cause it said so in my dreams The future looks bright, the gypsy told me so last night Said she saw our children playing in the sunshine And there were you and I ... in a house, Baby, no lie And all these things were yours, and they were mine Oh, my Candida We could make it together The further from here, girl, the better Where the air is fresh and clean Candida Just take my hand and I'll lead ya I promise life will be sweeter 'Cause it said so in my dreams Oh, my Candida We could make it together The further from here girl the better Where the air is fresh and clean Candida Just take my hand and I'll lead ya I promise life will be sweeter 'Cause it said so in my dreams ;) |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 5th, 2006, 1:17pm ::) Boys. Even though I'm MUCH too young to recognize that song, Scott - thanks a lot for implanting that ear worm. Now I have to go find a radio to listen to a new song. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 12:02am Hi So I took my KIP 8 to ER just now .. 04:00 in the morning. I know I can survive a KIP 8 , but it does hurt like hell, and I wanted to stress the urgency of the situation. It's 40 minutes walk from here, actually a nice brisk walk, enough to have the beast roar it's head and tuck in again before I arrive .. clenching my teeth and chuckling my fists along the way .. cant run around screaming at 4am can you. when I got there I was at .. say .. 6 .. I had to register, wait, show my passport, wait, confirm all my personal data .. wait .. be put in a waiting room and wait for 5 more minutes (clocked that). There was noone there. They had a coffee machine, thank grace. A nurse came out to ask what I needed. I explained the situation. She said 'but you're feeling better now' .. so theres nothing she could do for me. She asked if I needed any painkillers. I explained her about oxygen but she said she wouldnt be able to give that without a therapy set out by a neurologist .. never .. and no neurologist in the house ('not at this time of night' .. slightly amazed, as if i had bad timing). I told her I had this appointment in 3 weeks and these attacks twice a night. She said I should speak to the doctor about that. Then it was silent. I had tears in my eyes and said "can you help me please". Apparently, that was the password. She went to make some phonecalls. She wrote down my name. I can call them again tommorrow. No promises. pfff .. i'm ranting .. this thread wasn't supposed to be about me .. thank you for reading that, whoever you are ... [smiley=pokeeye.gif]-pike |
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Title: Re: simple tricks and tips to endure Post by georgej on Oct 6th, 2006, 2:03am on 10/06/06 at 00:02:36, pike wrote:
This seems very strange to me, but it's not the first time we've heard it here. Why is there such a willingness to dispense painkillers and such a resistance to supply oxygen--a gas that we breathe everyday from the atmosphere? Pike, I understand your unwillingness to medicate contrary to your doctor's wishes or without your physician's consent--but it's not as if you're trying to obtain arsenic here--it's air. You've shown a willingness to try alternative methods, including herbal supplements of questionable value. What penalties are you facing in Holland for the unauthorized use of oxygen? I can't imagine that they'd be particularly draconian. If you're going to take things into your own hands anyway, at least look seriously at something that may actually do you some good. Not a flame at all--please don't consider it one. But I'm puzzled, frankly. Medical treatment is fine, but sometimes you've got to do what you've got to do. Either that, or just suck it up and deal with it. Look--I'm episodic too, and my cycles and hits sound somewhat similar to your own. So I know where you're coming from. Best wishes for pain-free time ahead, George Edited to add: Jeez oh pete, Scott--out of all the songs in the world, why did you have to bring that one up? Ear-worm is right--that song is like a brain-virus that burns up your hard drive and sends dirty e-mails to all your friends. :P |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 5:50am on 10/06/06 at 02:03:18, georgej wrote:
You're completely right .. a friend of mine has found a company that sells medical o2, for use in boats actually. They want to know if I want E-vasion, Pi, or X-bla. I've been refered to medical companies, but they refuse to sell anything to consumers. But I can buy from this boatcompany if I know what I need. If that doesn't work, I'll do the welding gas. I will tell the hospital this, so if they still delay treatment it's sort-of-their-decision. Quote:
nay, none, I suppose. It's just not so easy to get afaik, not sold on a comsumer market. thanks! *-pike |
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Title: Re: simple tricks and tips to endure Post by Chillrmn1 on Oct 6th, 2006, 6:36am pike - These folks are steering you in the right direction about O2. I went 28 years without trying oxygen and then during my last cycle in 2004/2005 gave it a try. What a godsend! Finally found a way to abort a hit in 5 - 10 minutes without any side effects for me. I wish I had known about this sooner! Knowing what I know now I would source the O2 by any means I could. BTW - I learned about oxygen therapy from this site. Good luck, Bob |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 6:40am Hi Bob any idea what "brand" of oxygen(tank) you are using ? thanks! *-pike |
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Title: illegal meds Post by pike on Oct 6th, 2006, 9:31am FUN .. I just went to a pharmacy asking if they didn't have bigger than .1mg Melatonine tabs .. she said no .. dutch regulations .. I said they sell those in the US .. and then she whispered she actually *did* have those too .. import .. big 3mg tablets .. and with a sly move she took them from UNDER THE COUNTER, literally, she was not allowed to sell them, but if I really needed them .. she could .. [smiley=laugh.gif] hilarious ! *-pike |
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Title: Re: simple tricks and tips to endure Post by LeeS on Oct 6th, 2006, 9:34am They're banned over here too pike >:( Good tale though. I bet if you'd have pushed her a bit you probably could have got some of those funny mushrooms too ;) ;;D All the best with your battle. -Lee |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 6th, 2006, 9:49am They ban melatonin of all things? It's one of the safest things you can take, and almost completely non-toxic. |
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Title: Re: simple tricks and tips to endure Post by georgej on Oct 6th, 2006, 10:45am on 10/06/06 at 09:49:50, BigCoffinHunter wrote:
There's a whole thing in the EU about the supplements market--it's much more heavily regulated there than it is in the US. I don't know many of the specifics, but I gather that it is much more difficult to acquire many of the supplements we see over-the-counter here. I'm also told that the pharmaceutical companies would like to see the same sorts of regulations in place in the US. Which wouldn't surprise me. As brewcrew said in another post, Health Care isn't really about health at all. Why else would there be such a frantic effort to block our access to less-expensive Canadian drugs? Concerns about purity? Phooey, blah, and double-blah. Best, George Edited to add: Pike, if you now have access to 3 mg tablets of melatonin, try three tablets (9mg) taken 1/2 hour before bedtime. It may help to reduce the number of nighttime hits that you get. Don't take it during the day. Give it a few days to work--it may not work right away. It helps me. |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 6th, 2006, 10:56am Melatonin's only recently become "legal" here in Canada too (within the last 2 years). We used to have to wait to buy it at garage sales of folks who'd visited the states. ::) |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 11:54am The story continues though .. after being to ER last night I called the hospital this morning .. they insisted they could not help me in less then 3 weeks. note I have *no* medication whatsoever, which is why I started this thread about tips & tricks to endure the pain .. So I insulted her, saying I Thought She Was Not Capable Of Taking Such An Important Medical Decision Without Consulting The Neurologist, including the capitals. But it worked, she would talk to him and return my call. At 4pm I called them again, because they close for the weekend at 5. She said she had forgotten, but .. and so I finally talked to the neurologist ! He was really surprised I wasn't having any medication, but refused to give me oxygen .. I said it worked best .. he said not .. I said it was safer .. he said not .. I said it was quicker .. so he prescribed imitrex injections. Well whatever. I ran to the hospital to pick them up, and got this package *without any instructions*. So, .. ehr .. I guess I'll shoot them in the upper eyelid, no ? Right where it hurts ! And then we'll see ! Quote:
Well, I'm trying, Annette ! Triptanides ? Serotonine receptor ? Yay ! Maybe I should stick to tigerbalm and green tea, or what ? Strange they only gave me 2 doses too, just before they close over the weekend. Sooooooo .. shall we talk about more tips and tricks to endure the pain then ? duh! *-pike |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 6th, 2006, 11:56am I seriously don't understand the doctor's O2 reluctance. Any docs here know of why they would be so stubborn about O2 and not drugs? |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 6th, 2006, 12:05pm These stories really reinforce my absolute hatred for the ER. Unless I'm about to drop dead, I'm not going in. Even then I may give it some thought. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 12:07pm on 10/06/06 at 12:05:18, BigCoffinHunter wrote:
No, this was the hospital, daytime, well, closingtime. But just the plain hospital, nurses and sick people and bad coffee and all. *-pike |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 6th, 2006, 12:09pm Oh my mistake, sounds like the regular ER experience to me. Still I don't understand their reasoning. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 12:12pm on 10/06/06 at 10:45:58, georgej wrote:
OK .. Will try the triptans first, I need a hit now to see if it works. Tommorrow or sunday, I'm back to Taurine and Melatonin - and green tea, flanel bags of cooked rice and prayer. thanks for the advice! *-pike |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 6th, 2006, 12:15pm I'd start the melatonin right away. I could take some time to become effective anyway. |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 2:53pm on 10/06/06 at 11:56:46, BigCoffinHunter wrote:
Not a doc, but I have a guess, or well, 3, - its complicated .. equipment and stuff. this is actually the only argument the neurologist gave me when I asked him why he wouldn't let me try oxygen - if misused, you can kill yourself. fairly easy I suppose. and that's illegal here :-) - it's been a party drug for a while. i remember you can pass the roadpolice alcoholtest by using some pure oxygen. gets you sober too, no ? & doesnt it cure hangovers ? all in all, it might get too popular if they let people have it guessing, *-pike |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 6th, 2006, 3:05pm I've never heard that. AFAIK the only think that can 'get you sober' is your liver breaking down the alcohol. If O2 could get you actually sober, I'd think bars would offer it to you on your way out. |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 6th, 2006, 3:16pm it can definitely clear your head the morning after (because it makes your headache go away)but....as to making you sober? I wouldn't think so. We have oxygen bars here in Calgary where lots of folks visit Sunday mornings. $5 a minute of "flavoured" oxygen delivered through nose cannules. ::) I've never heard of anyone beating a breathalyzer test by huffing O2 though. Complicated? It's a tank, regulator, hose and a mask. what's complicated about that? And, how do you kill yourself with oxygen? Hit yourself over your head with the tank? :-/ |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 4:32pm on 10/06/06 at 15:16:24, Margi wrote:
Ow.. could be. wild guessing on my part. Hearsay. The breathalizer test .. the same. Excuse me for spreading out nonsense [smiley=bag.gif] .. Quote:
I havent seen the equipment, but with welders gas, you can blow your longs out if you put it on 40l/m, no ? Ai, here I go guessing again. apparently not, if you say so. No danger in it, apart from fire ? [smiley=huh.gif]-pike |
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Title: Re: simple tricks and tips to endure Post by Margi on Oct 6th, 2006, 5:05pm Pike, I apologize - I was directing my response more at your doctors' lack of knowledge of O2...I didn't mean to criticize YOU. Check out the Oxygen info in the buttons to the left here for the full setup. There is a flow regulator that you need to use and clusterheads don't need to go any higher than 15 litres per minute to get relief. sorry, in a rush here - hope you find some pain freedom this weekend!! Margi |
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Title: Re: simple tricks and tips to endure Post by BigCoffinHunter on Oct 6th, 2006, 5:43pm Yeah I guess you could blow your lungs or something, but hell if old folks who can barely function can use it, I think a normal person could with some simple instructions. My amazement is more the fact that docs seem so fixated on drugs (not that they don't work, we here would be a mess without them) and disregard something so simple, that is proven to work, and a hell of a lot cheaper. Is it something that's learned in school, just keep trying pills from the list until you find one that works? I'm not a believer in homeopathy or natural healing stuff, but O2 is so simple....I don't get it. |
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Title: Re: simple tricks and tips to endure Post by Sandy_C on Oct 6th, 2006, 6:11pm [quote author=pike l Sooooooo .. shall we talk about more tips and tricks to endure the pain then ? duh! *-pike [/quote] Ok Pike, back to tips and tricks. Water,water, water - and then, more water - all with ice, of course. I drink it continuously during cycle - at least 8 12oz glasses per day. You mentioned earlier in the thread about chewing - I chew the ice cubes. I hold the cubes in my mouth because the blood vessel that runs across the roof of my moutn (right side only), swells up huge, and holding an ice cube tightly against it helps. Ice packs - I have 6 gel packs in various freezers - at home and at work. Those come out and are pressed right above my right eye (I'm a right-handed Ch'er). Another gel pack goes to the back of my head - between my spinal column and my right ear. And a third one wherever else I need it. When in a situation where my ice paclks are not available, I will use anything out of my freezer, or anyone's freezer that is ice cold - vegetable bags (they mold nicely to the head), frozen chicken leg/thigh parts, popsicles - I've used everything. Melatonin- 9 mg per night plus one, sometimes two Benedryl. Red Bull - taken at very first sign of a hit - Chug - do not sip. I've taken two, back to back for the caffeine/taurine hit. Cold air - my body heats up during a hit - like running a fever - go anywhere that's cold - outside, under a ceiling fan - in a snowbank - cold shower. The best thing for me is to remove myself from any and all distractions. - Go to a room, any room, where you will not be bothered with things like "honey, can I get you anything?", TV, radio, no music, no nothing. My supporter, who is my husband of 37 years, knows to leave me completely alone, to handle my hit, work my way through my pain by myself. But, he's right there the minute my hit is over. These are my tips - these are my tricks. Wish you were pain free. Sandy |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 6th, 2006, 7:12pm Hi Sandy now we're getting somewhere ! I was starting to fear most of you clusterheads had no creativity left and were all suffering your way through hell like slaves on the beasts leash. Or maybe, I'm the only lucky son here with kip 8 attacks and some braincells left to deal with pain. Yes, water .. all the time .. not cups or glasses, full bottles, big gulps. It's just a habit I got into: have empty bottles everywhere in the house, always keep a few bottles in the fridge, carry a tiny bottle in my bag. For the other things - i'm a hot clusterhead apparently. I get very cold during an attack. I wear sweaters and even a cap (bonnet,woolen) and shawl, wrap my head in hot wet things, take hot showers. Very strange, these two types .. it's in the survey too. Quote:
cool sandy, thanks! How about humming. Instead of whining and growling, I hum nowadays. breath in through my mouth, breath out through my nose with a HMMMMMMM. It heats up my nose. If you're the cold type, you may want to do that the other way around probably :-) If you overdo it, you get dizzy, which may not be all good. Or maybe it is. Either way, you look like a shaman in trance. combines nicely with biofeedback ::) I think breathing in general is a tip. Breathing is the key to anger management. And humming just makes me breath more conscious. $2c, *-pike |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 8th, 2006, 6:26pm Hi just wanted to tell y'all my imigran (sumatriptan) works. I'm surprised on how this kind of completely changes my outlook on life, even if my attacks arent severe. It's amazing what pain can do to you, given a few weeks. Last week I was really loosing it. It's not just the pain that get's you depressed, it's the pain over time, the .. inevitability. Ah, a last one then. shakers. I have two shaking eggs here - they're like sambaballs without sticks. As I pace (cant sit still, cant run inside, so I walk in circles) I shake them. Utter frustration ofcourse, but it helps me focus too. I can hear it in the rythm when i'm indulging and pain takes control, and it reminds me to fight and stay on top of it. This is just an attack; I know it will pass. Shake. Survive. It also helps me to remove this earworm I usually wake up with when an attack starts .. often have some maddning little three-line-song circling in my head :-/ thanks,all! *-pike |
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Title: Re: simple tricks and tips to endure Post by andrewjb on Oct 8th, 2006, 8:13pm hello pike, good to meet you. a bit pissed its here. at this point try a realy strong coffee and settle to some yoga based exercise. andrew. |
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Title: Re: simple tricks and tips to endure Post by kcopelin on Oct 8th, 2006, 11:31pm on 10/06/06 at 19:12:53, pike wrote:
Um, Pike, perhaps this was intended to be funny-and usually I have a great sense of humor-but frankly the "most of you clusterheads had no creativity left" and "I'm the only son here with kip 8 attacks and some braincells left..." Well, just sounds somewhat insulting and inflamatory to me. People who have dealt with CH for a very long time have given you not only tips, tricks but also advice on O2 and meds. You certainly are not the only one with braincells left-I've got at least 4 or 5. 8) hoping you have some pain free time to enjoy your creative braincells. kathy ::) |
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Title: Re: simple tricks and tips to endure Post by Opus on Oct 9th, 2006, 1:19am Pike, Try the Imitrex tip in the buttons to the left. I get vials and needles to make it easier. I use 1/3 shots. O2 is not flammable or explosive, but because it is what makes things burn, any flame near O2 will burn with a greater intensity. There is already 20% O2 in the air. Sleep sitting up, a recliner is best. I hope this helps, Paul |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 9th, 2006, 3:21pm Quote:
ooops, bad phrasing, really [smiley=oops.gif] I ment to say I am lucky to only have light attacks; so I have some braincells not occupied by pain during an attack. when things are really severe, you dont go playing around anymore. I'm awfully greatfull for all the great brains spent on my personal situation by everyone here, also on medication. And I'm also very greatfull for the few tips & tricks people posted. Happy to see they're still coming in: Quote:
Good point, paul! I always wondered why napping in the train is not a trigger, while napping in bed is .. maybe, if I need, I can safely take a nap on a chair... hm .. will try that once .. when deadly tired ... thanks! *-pike |
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Title: Re: simple tricks and tips to endure Post by pike on Oct 9th, 2006, 3:35pm on 10/08/06 at 20:13:41, andrewjb wrote:
Sounds good, andrew. Very curious if you could add some detail what you do "yoga based". I'm not into yoga .. but there's lots of species. Some yoga's are very physical, some meditative. How do you deal with the pain during the exercise ? very curious. btw .. interesting thread here: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1149926369 *-pike |
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Title: Intermediate results Post by pike on Oct 9th, 2006, 4:37pm Hi let's sum it up a bit. I've left out all tips about medication and preventives. These are only tips and tricks *to endure the pain* sofar. Some of them also lessen the pain for some people. There is no medical explanation for anything, it's just what people do. It may not work for you. There's lots more on this site. This is just what came up in this thread. first, check this list. http://www.ouch-us.org/chgeneral/nonmed.htm
did I forget anything ? fun .. we should start a wiki on this :-) thanks! *-pike |
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Title: Re: simple tricks and tips to endure Post by andrewjb on Oct 9th, 2006, 7:20pm hello pike. yoga based, being "stay calm". start excercising by stretching sitting on the floor, no need to get more active-go with the flow, stay loose. |
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