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Piglett1969
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Alternative Treatments
« on: Dec 21st, 2003, 10:53pm »
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Huh   Has anyone here tried a more "natural" approach to dealing with their CH?  I've been thinking of trying massage, reflexology, or chiropractic.  I was on Verapamil off and on as needed for about 5 years, but have started having shortness of breath with it.  My neuro has since taken me off it and prescribed Topamax.  Luckily, I'm not in the middle of a cycle right now, so there isn't any rush about taking it.  However, I'd rather NOT have to take it at all (or any meds for that matter), as I'm worried about the side effects.
 
I was hoping that massage, reflexology, chiropractic, etc., might help to prevent the CH's as well as stop them if they get started.  I already practice yoga, and it seems to have helped with relaxation and stress relief.  Has anyone had any experience with this?  Thanks!
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Re: Alternative Treatments
« Reply #1 on: Dec 21st, 2003, 11:01pm »
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For Me:
 
Massage Therapy  - Didn't work.
Chiropractor - Didn't work. (wasted tons of cash)
Aroma Therapy - Didn't work.
Herbal Tea Mixtures - Didn't work.
 
Acupuncture - Not sure, I heard it didn't work.
 
Everyone's different though.
« Last Edit: Dec 21st, 2003, 11:02pm by YOSIMITE » IP Logged
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Re: Alternative Treatments
« Reply #2 on: Dec 22nd, 2003, 12:25am »
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Hi Piglett,
 
I just started acupuncture last week.  I haven't noticed any huge results yet, but I am noticing some things.  First of all, my attacks have started coming earlier in the evening, and I have been sleeping longer through the night without having an attack.  I honestly don't know for sure if that is from the acupuncture or not, but if it is...cool!  Also, it has seemed to slightly lessen the intensity of my 'chronic daily headache,' which hopefully means I will need less medication or a shorter hospital stay maybe when I go in next Monday.  Who knows!  I am sure it's not my preventives doing this because they haven't been working for months now!  I know people get varying results with acupuncture, and you really need to find someone who knows what they are doing.  A physician who does it appears to be better than just your average Joe, and if you can find someone trained in China, it's even better.  That's my 2 cents on it!
~Lizzie Smiley
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Re: Alternative Treatments
« Reply #3 on: Dec 22nd, 2003, 1:20am »
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IMHO, the "natural" approach you're talking about is NOT going to help one bit. But, I could be wrong.
 
Click on the blue line below, search and read the site and make up your own mind .
 
 http://www.quackwatch.com/
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Re: Alternative Treatments
« Reply #4 on: Dec 22nd, 2003, 1:25am »
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on Dec 21st, 2003, 10:53pm, Piglett1969 wrote:
Huh   Has anyone here tried a more "natural" approach to dealing with their CH?  I've been thinking of trying massage, reflexology, or chiropractic.  

 
Now is a perfect time to try:
  www.clusterbusters.com  
 
Might as well avoid the next cycle altogether and there isn't anything "more" natural than a mushroom.
 
Twisting and "cracking" your bones, sticking little needles into your body, or sitting with your feet behind your head for an hour just don't sound quite as natural to me. But then, I don't knock anything that helps an individual.
 
PF
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Re: Alternative Treatments
« Reply #5 on: Dec 22nd, 2003, 1:58am »
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Yes, my husband tried a lot of that:
 
*Acupuncture inbetween cycles: he felt really good with this treatment. In fact so good that he was almost expecting not to get his cycle back, because his head felt so clear and without any trouble. It didn't prevent it though, but it is a fact that the first 4 weeks were only half in intensity as in other times and that has never happened before (no proof ofcourse). We tried acupuncture in this cycle too, but that didn't help, it seemed to trigger attacks more then prevent them.
 
* Another CH-sufferer says he benefits from bio-feedback and tai-chi. But this too will not break the cycle. He claims though that his attacks are now half an hour and not 1,5 hours. There's also a little trick which I read here somewhere: improving the bloodflow to your arm. Which causes the bloodflow to your head to diminish. We tried that but he couldn't make it work. Perhaps you can?
 
* In addition to that you could try the exercise-thing. When you are running the moment an attack starts, it can really help, even abort it. There are quite a few people using that, if I read this forum. With others it works the opposite.
 
* We tried herbs, also Chinese herbs. Didn't work. I wonder if it's possible to do something with herbs, actually I don't really think so, at least not as an abortive.
 
* We tried aroma's (sniffing up as an abortive). Seems to help for some, but not for us. He finds the scent "stinging" and it makes it worse rather then making it better.  
 
* Last but not least we tried a lot of homeopathy. I study that myself. Came to the conclusion that it should be possible to find something, because I did manage about 7 times to stop the attacks for a shorter or longer while. Sometimes for up to 3 days. Big hurrays here but the problem was, the attacks came back again and again and again, it seemed to do only something palliative, not curative. Came to the final conclusion that IF you want a homeopathic treatment you have to be very careful (it can make it worse too!), and you have to be able to watch the person the greater part of the day, so that you're right "on top of it". I don't think you will get very far with just a regular homepathic treatment, because they will give you some globules send you home and have you return in a week. Before a regular homeopath finds out what the cure is, the cycle is over anyway.
 
* We tried one or two other things but those turned out to be completely BS, but hey, you never know do you?
 
And then the mushroom thing. That's a possibility so it's worth looking into that. We're doing that at the moment and it has helped us further then other treatments.
 
There's some more tips somewhere on this site. Look at water treatment and there's another section about "blue cheese and vinegar" (didn't help with us), eating peppers or ginger (didn't help with us), and other stuff that seems to help at least some people.
 
Good luck. If you want to know more about the homeopathic thing, better PM me, because I have noticed that a lot of people consider this crap and BS  (thanks) so why write about it here. Oh, and like I said, I'm not advicing on it either, because there are better ways (mushrooms for example). But it's still an interesting subject.
 
End of story  Grin
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Re: Alternative Treatments
« Reply #6 on: Dec 22nd, 2003, 2:17am »
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a few more thoughts on this subject from me Smiley
 
i was totally desperate when i turned to acupuncture as a form of treatment.  i have tried preventives in every category, and the only type of preventive left for me is low dose narcotics, which i really don't want to do because i don't think it will be effective.  also, i cannot try 'shrooms right now because i am on too many meds, and i'm just not ready to do it.
 
i tried chiropractic and massage, and they didn't help for me.  i cannot do aroma therapy because smells trigger migraines for me.  however, when i went to the acupuncturist, i was desperate for any type of relief.
 
i like acupuncture because it doesn't involve taking any type of chemical or medication, and the acupuncturist is actually going to help me get off as many of my meds as possible.  i will be able to stay on those meds that i feel help me.  he is willing to work with my neurologist on this.  i just do not want to add any more chemicals to my body because i already feel like i'm a toxic waste dump from the 25 or so pills i take a day, and acupuncture is a good form of treatment for me.
 
i feel that when you get desperate, at times you will be willing to try anything.  on another headache website, we refer to alternative therapies as "complementary treatments" as opposed to "alternative therapies" because in reality they should be complementary to your treatment instead of taking  the place of it.
 
it used to really bother me that an alternative treatment could really help a headache while western medicine could not, but then i came to think of it as, what matters is that the pain is reduced or less frequent...it doesn't matter where it comes from!  if acupuncture is going to be the thing that helps me, than wonderful!  so it's not the most traditional of approaches....that's ok!  all that matters is that i will feel better!
 
i just started it last week, so i don't know if it will be the answer for me, but i am very willing to give it a shot and look at it wholeheartely and with an open mind.  if it does happen to work, then wonderful.  if it doesn't, well then i will keep looking for help and relief in other places.  what matters is that i will never give up.  good luck to you!
 
~Lizzie Smiley
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Re: Alternative Treatments
« Reply #7 on: Dec 22nd, 2003, 10:13am »
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  Bodybuilding doesn't work. I started lifting weights 3 days/week, eating clean-6 protein heavy meals/day. I supplemented with whey protein shakes (which included tryptophan - a serotonin precursor), creatine, glutamine, multi-vitamin, amino acids, testosterone supplements, etc... Did not prevent the cycle.  
 However, prednisone and verapamil in the morning and amerge before bed stopped it cold.
 
PFDANs,
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Re: Alternative Treatments
« Reply #8 on: Dec 22nd, 2003, 6:06pm »
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Thanks for all the replies, everybody!  I hadn't thought of acupuncture, but I've heard good things about it, so that might be worth looking into.  I've also heard that applied kinesiology can be helpful too.   The basic idea is that every organ dysfunction is accompanied by a specific muscle weakness, which enables diseases to be diagnosed through muscle-testing.  Don't get me wrong, I'll definitely take the meds for my CH if I have to, but I'd really rather not if I can avoid it.  That includes mushrooms...I just can't get beyond the idea that they're so similar to LSD...an illegal drug.  To each his or her own.
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Re: Alternative Treatments
« Reply #9 on: Dec 22nd, 2003, 6:15pm »
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hi piglett,
that kinda is how i feel too about the shrooms.  my brother did LSD when we were in high school, and because of that, i kinda cringe when someone mentions mushrooms.  i know it is a form of treatment that works well for many people, but i am just not ready to do it yet.
 
i am also more of the opinion that i would like to have no meds or chemicals, if possible, but right now it's not for me.  however, my acupuncturist is willing to have me stay on some of them if i want, which makes me feel relieved.  ideally he would prefer it if i was off of the meds, but he isn't pushing me, which is helping me to feel more comfortable.
 
good luck! Smiley
~lizzie Smiley
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Re: Alternative Treatments
« Reply #10 on: Dec 23rd, 2003, 1:42am »
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I have tried everything under the sun for the last 27 years to battle the beast. Very few things have worked including most conventional medicine. The triptans work, oxygen works.....oh yeah, shrooms are the closest thing to a cure I have ever experienced in almost three decades of pain. Mushrooms work....period....at least for me. Stopped my cycle in its tracks and I am almost two months PF......miracles do happen. Unbelievable but true! Trust what Floyd says.....I did and I am PF today...thanks Floyd!
 
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Re: Alternative Treatments
« Reply #11 on: Dec 23rd, 2003, 1:52am »
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on Dec 22nd, 2003, 6:06pm, Piglett1969 wrote:
 Don't get me wrong, I'll definitely take the meds for my CH if I have to, but I'd really rather not if I can avoid it.  That includes mushrooms...I just can't get beyond the idea that they're so similar to LSD...an illegal drug.  To each his or her own.

 
Look I don't want to start up a discussion about shrooms and meds especially not when you're not comfortable with that, because you're right, everyone his own.
 
I just want to mention that in the search for something that could help my husband, I've done a few evenings of comparing molecules, like LSD, LSA (hallugenetic stuff), but also ergotamine and methysergide (sansert). It's striking how similar these molecules are. There have been experiments with LSD in earlier times, and researchers found that LSD DID work in migraine and cluster. They just didn't want the hallugenetic effect. Therefore other medications were developed, "inspired" by LSD. This is something I looked into myself, but I heard this from other CH-heads too who know lots more about it.  
 
The trouble with LSD is that it's illegal and yes, there can be side effects that you should think of before using.  
The trouble with other "LSD-inspired" meds is that the side-effects are even bigger, and it doesn't work as good as LSD.
 
Just thought I'd let you know. In a way every chemical can be used as a med ... LSD is a chemical. The stuff that is in the mushrooms is a thing that is found in nature as it is. Like St.Johnsworth is a herb that has definate healing effects and is found in nature.  
 
So it's with mushrooms just a matter of defining it as illegal (it's not in Holland where I live ...).
 
Just wanted to mention it, I do value how you think about it for yourself, because I'm sure you must have thought about it a lot. Just thought to give you a bit of background info.
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Re: Alternative Treatments
« Reply #12 on: Dec 23rd, 2003, 2:42am »
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A bit on the roots of the mushrooms, ergotamines, methergine, sansert, LSD, etc.  I haven't read through the mushroom posts, so it may all be there.  However, I'm a pre-nursing student, and through microbiology, we've spent a lot of time discussing all of these things combined and talking about their roots.
 
They all derive from the fungus Claviceps, which is a mushroom fungus.  There is a certain chemical formula from which they are all played around with to develop into their various forms.  What we discussed in great detail in our microbiology class was the fact that claviceps is found on moldy rye grain and moldy rye bread.  There are strong suspicions that the Salem Witch Trials may have been the results of ergot poisoning because the girls who went into spams and hallucinations accused women of the town of being witches.  The conditions in Salem at the time would have been just right for the grain to have grown claviceps, and they wouldn't have known what to look for.
 
There is along list of side effects for ergot poisoning, and one wouldn't want to acquire it.  Besides the muscle spasms and hallucinations, there is gangrene and eventual death as side effects of the poisoning.  My professor stated that it is not a good idea to eat moldy rye bread to get high!  Find another method!  LOL
 
At any rate, he discussed then how methysergide and LSD were derived from the original claviceps fungus (ergot).  There is a molecule that they have in common, but then methysergide builds off of that molecule to majorly alter it.
 
After hearing all of the effects of ergot poisoning and that methysergide shared the same basic molecule as LSD, I kinda freaked out a little bit.  So I asked my professor after class about the medication I was taking (methergine).  He said that the pharmaceutical companies have altered the shit out of claviceps so that it is not dangerous at all.  He stated that yes it does have the original molecule, but it is extremely altered and they also are taken at such small doses that it would not be possible to get ergot poisoning to take normal doses of methysergide and methergine.
 
DHE (DihydroERGOTamine) is a further derivative of claviceps which has been extremely altered beyond belief.
 
So yes, they are derived from claviceps (ergot), but it is a remote connection at best at this point.  The most natural way to get claviceps is by doing LSD or by mushrooms because these are the least chemically altered or not altered at all.
 
Personally, I have not been ready to take this step yet.  But I have done my fair share of looking into it because my interest was sparked by my microbiology class where we learned a great deal about claviceps and how formed into its various derivatives.  I would have to get out my microbio notebook and textbook if you want to know more specific details from my class, but I do have them available.  Just let me know! Smiley
 
~Lizzie Smiley
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Re: Alternative Treatments
« Reply #13 on: Dec 23rd, 2003, 3:12am »
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Yes in fact I would like very much to look into it, because this stuff interests me very much.
 
Like I said, I wasn´t aiming for a discussion, everyone should know for themselves what they want and do not want for a treatment. Jos doesn´t like taking meds at all, he had a lot of the imitrex, because he couldn´t do it on just oxygen, but for the rest he kinda swore off all meds and switched to natural treatments ... which is tougher sometimes but if you have results usually it´s with less side effects. We´ve been there ... trying and trying.
 
I am trying to keep an open mind myself to any opinion, positive or negative, so yes, if you would want to share your notes with me (that is ... if your remark included me at all, won´t be offended if you didn´t mean me ).
 
Greetings, and all the best to you all.
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Re: Alternative Treatments
« Reply #14 on: Dec 23rd, 2003, 3:20am »
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on Dec 23rd, 2003, 2:42am, chronic_chic wrote:
 He said that the pharmaceutical companies have altered the shit out of claviceps so that it is not dangerous at all.  He stated that yes it does have the original molecule, but it is extremely altered and they also are taken at such small doses that it would not be possible to get ergot poisoning to take normal doses of methysergide and methergine.
~Lizzie Smiley

 
I'm not looking to get into an argument here. To each his own, but...respectfully.....
It would seem closer to the truth to say the pharmaceutical companies altered it and left all the shit in methysergide. To say methysergide is not dangerous at all is a crock, IMHO. ( I know you didn't say that) It's so dangerous and so full of possible permanent and terrible side effects that most doctors wouldn't even prescribe it for clusters. If you do happen to get it, you had/have to take a series of tests and a 30 day holiday from it every 6 months to avoid the worst of the side effects. The tests are/were done to see if any permanent damage had been done to your organs. It was so seldom prescribed and had so many side effects that it is no longer financially viable as a prescribed medication and has been pulled from the US market.
 
As far as preventative medications available for clusters, I'd venture a guess that methysergide is possibly THE most effective for clusters. How many people here, percentage-wise are now, or were, on it when it was discontinued?  Not many. Why do you think that is? Since it's one of the oldest, it's not because doctors didn't know about it. Oh, they knew about it alright.
 
How many ergot poisoning cases have been reported over the last say, 50 years, from using LSD or psilocybin mushrooms?
 
We could argue (discuss) what is safer for years. Would you like to see numbers of deaths caused by acetaminophen each year? How about Imitrex?  
 
I hope you find complete relief in whatever you choose to help you. We're all in search of the same thing. We all make what we feel are the best choices we can, for us.
 
Merry Christmas and a Happy and Healthy New Year
PF
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Re: Alternative Treatments
« Reply #15 on: Dec 23rd, 2003, 3:21am »
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Hi Hannah Smiley
 
I will gladly share them with you!! Smiley  I just am planning on finally getting some sleep tonight so I will dig them out tomorrow sometime, ok?  I know they are in my bag in my closet because I just brought them home from school the other day...at least I better have!  Wink  Just give me until sometime tomorrow (well I guess it is today at some point now!), and I will find my notes and make another post.
 
I like sharing information I have found. Smiley  
 
~Lizzie Smiley
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Re: Alternative Treatments
« Reply #16 on: Dec 23rd, 2003, 3:30am »
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Pinkfloyd,
Do you know about methergine?  I take this...you must also take the 30 day holiday every 6 months.  There is a risk of retroperitoneal, cardiac, and pulmonary cavity scarring.  But the risk is EXTREMELY small.  I have been having flank pain (technical term for pain in the kidney area) for some time now, and every time I go to the doctor, I mention that I take methergine and could this be the cause???  Every time they say no that would not be the cause.
 
My headache neurologist did order blood tests the last time I went to see him just to make sure that all kidney and liver function was running properly.  And also, I will have an MRI of my lungs every year to make sure there is no scarring in the lungs.
 
I won't start an argument either because methergine HAS really helped me, and it is the new alternative to methysergide...as methysergide was pulled off the market...methergine was put on the market.  I will be happy to put all of the information I have up tomorrow.
 
However, if given the choice of being off of all meds and simply finding relief in acupuncture, which requires no meds or chemicals whatsoever...if this truly worked for me...honestly I would choose this.  To have no altering substances in my body whatsoever would be ideal for me.  If it is going to take some substances to keep the pain away, then so be it, but I will have to determine that somewhere down the line if the acupuncture fails me.  For now, I am trying it with an open mind...just as you are all trying your therapies with an open mind. Smiley  We should all keep an open mind to what works for one another because it really doesn't matter what takes away the pain does it?  So long as the pain is GONE! Smiley
 
~Lizzie Smiley
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Re: Alternative Treatments
« Reply #17 on: Dec 23rd, 2003, 3:33am »
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Just a PS  .....
 
We have been considering the use of LSD, because there are at least a few reports that LSD can break off a cycle without all the inpleasant first effects anyone might have on the use of mushrooms (which was very tough on us, though it did help us too). One or two doses of LSD can stop a cycle dead. Methysergide can´t do that for anyone although it resembles LSD.
 
So I have been asking around about LSD, because I don´t want to advice something to Jos that is perhaps dangerous. The guy in the mushroom shop and a lot of other people (who know really a LOT about biochemics) told us that LSD is not dangerous in itsself, though it might cause some after effects in some people (this is what was holding me back). It would be so that your body can only get it OUT again with the greatest difficulty, with other words: it will leave your body very slowly. Perhaps that very fact is the reason it helps so long and `clean` on clusterheadache.
 
So I´ve been not too keen on using it yet, but I would use it sooner then methysergide, because you need only one or two (quarter) doses of it, and you wouldn´t need to take it for the rest of your life, like methysergide.
 
Just some info to compare, not meant as critisism (but you guessed that , I think ....).
 
Hmmm, this was not very `natural` ofcourse, perhaps out of place in this thread, sorry.  
 
I´d be happy to give info on homeopathics ... there! Now I´ve pulled it back into place  Grin
 
Oh, and yess yess I would love to read your notes just from interest. If I can help you out with other humble info from my side please let me know. I found one or two things that are interesting
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Re: Alternative Treatments
« Reply #18 on: Dec 24th, 2003, 1:54am »
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Quote:
That includes mushrooms...I just can't get beyond the idea that they're so similar to LSD...an illegal drug.

 
Does knowing what penicillin is made from turn you away from it?
 
Please read the entire string titled 'Updates on Psilocybin Research???'
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Re: Alternative Treatments
« Reply #19 on: Dec 24th, 2003, 5:16am »
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The required dose of LSD is 1000x smaller than the required dose of methysergide 9or any other cluster med for that matter).  1000x smaller - think about it.  
 
The frequency of dose is 5-7days, thats at least 1/5th of the frequency of any other cluster med, so now we are at 1/5000th.  
 
A typical course is 1 - 6 doses.  So now we are at what 1/100000th.  How safe do you think that is.  Imagine dividing a methysergide (or any other cluster med) tablet into 5000 pieces and taking just 1 piece.  How much damage is that going to do to your body?  Even if the tablet were nerve agent you'd still be unaffected.
 
Alos to correct something from earlier, Ergotamine is the closest substance to Ergot, and also the most dangerous.  LSD is essentially just the nucleus component of Ergotamine.  Methysergide is modifed LSD... LSD with extra bits added on.
 
 
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