I have been going to an acupuncturist for a few weeks now, after having little success through the traditional health system.  I went specifically for the headaches, but she felt that what I described were not CH and has since been treating me for extreme muscle tightness in my upper back, shoulders, and neck.

Since having found this sight about 2 weeks ago, I am now sure that I am suffering from CH, and have reported that to my acupuncturist.  She has agreed to continue with hypothalamus/autonomic nervous system treatment for a few weeks to see what happens.

Has anyone tried acupuncture? Or any other holistic therapy, for that matter? I am a devout naturalist and strongly anti-pharmaceutical, and although I realize that the severity of the condition may well call for me to compromise, I am very interested in what kinds of alternative success other people have had, if any.

I think there are some on the board that have tried acupuncture, but I don't know of anyone here that has had any success with it.

A very, very dear friend of mine had clusters before I met her.  Hers (apparently) were the result of a terrible fall from a horse and being kicked in the head during that accident.  She feels the same way about holistic treatment vs. western meds and went for acupuncture.  She went 5x a week at first then 3x a week for six months.  She saw improvement in the level of cluster activity after 3 months and then saw improvement in the intensity of the attacks after 5 months.

It is almost 10 years later and she hasn't even ever had a headache since that time.

Personally, I believe she went into spontaneous remission.  Professor Goadsby has found that sufferers of cluster headaches actually have a structural difference in the hypothalamus, so I also believe that she suffered from "functional" cluster headaches - if they even were actually cluster headaches - and that's why they went into spontaneous remission and have never reappeared.

There are other alternative treatments - quite a few, in fact.

You can look into treating the CH with Kudzu (search the medications section of the old message board).  You can look into using melatonin, doing things to boost your serotonin production (through diet), you can look into using other supplements, including magnesium - other herbs - ginger, rhodiola.

There have been posts by various people about teas that worked - one I remember in particular was a Chinese herbal mixture.  

QUITE a few people now have turned to using psychedelics as treatment for both episodic and chronic cluster headaches.  There is information out there on their use.  LSA (seeds) are easy to try - especially if you have no other meds already in your system.  Psilocybin and LSD both show even greater efficacy in success of treatments.  ALL of these tend to be at VERY low dose (most are sub-hallucinogenic).  If you want to learn more, check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.   Here is the theory behind it:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Knowledge is your friend - and there is a wealth of information on alternative treatments people have tried on themselves.

Are you already familiar with the use of oxygen as an abortive?  Treatment in CH is divided into preventatives and abortives.  Obviously the goal is to find a preventative that works.  But in the meantime, 02 is is the best, first line of defense.  It can be prescribed for you and provided by a medical supply company OR obtained on your own if necessary (explained in various threads here).

But it must be used properly to work:

1) It MUST be used at the first sign of an attack.  Wait too long into the attack, it doesn't work.

2) you MUST use a NON-rebreather mask with the oxygen delivered at a minimum of 15 litres per minute.  Many docs aren't up on current research and still recommend 7 or 8 lpm.

3) The non-rebreather masks have a bag attached to them.  They work even better if that bag is a 3 litre bag.  The "oxygen info" link on the left takes you to a site where you can order something called an opt2mask, which is ideal for 02 delivery for CH.

4)  You MUST stay on the 02 long enough, or you will experience a "rebound."  Most recommend staying on for 10 - 15 minutes after the headache has been aborted.  You can also try slowly lowering the 02 flow rate so that you are not just abruptly stopping its delivery.

Most importantly - spend time searching these forums (and the forums of the old message board  - link on left).  Wanting to help yourself without the western meds may work for you, and there is quite a bit you can try before compromising.

Laurie

I have contacted three acupucturists in my area, and when I mention CH and answered their questions re. my history with CH, they all declined to provide treatment.

Paul

MITYRARE wrote on Nov 30^th, 2008 at 5:19pm:

I have contacted three acupucturists in my area, and when I mention CH and answered their questions re. my history with CH, they all declined to provide treatment. Paul

"A man (or woman) has GOT to know their limitations" Clint Eastwood.

Refreshing to hear that you have found three who know their treatment is NOT appropriate for CH. I have found one who has successfully treated my lower back problem (far better than traditional medicine).

Best,

Jon

I tried traditional acupuncture about 20 years ago.  Although the sensations were interesting, there was NO EFFECT on the frequency or intensity of my headaches.  I was treated over the course of months before I gave up hope of a "cure".

Laurie,

You did a good job covering the other alternatives that I can recall.  Some cautions I have with "natural" and "herbal" remedies:

1)  In the US, these are NOT regulated by the Food and Drug Administration (FDA), therefore may vary considerably in potency and efficiency (and contents?).

2)  There are "natural" and "herbal" toxins, extract of peach pits contains cyanide.

3)  There may be interactions between these "natural" and "herbal" remedies and prescription medication.  Please check with your doctor or pharmacist before beginning or changing "herbal" supplements.

Wishing you all well,

Ray

I didn't mention the simplest of all:  caffeine.  ;)   Most here recommend energy drinks with taurine supplement (like Red Bull).  When Gary used caffeine as an abortive, he stuck with just espresso.  Didn't like the energy drinks.  Often good to have handy in an "emergency," though with 1 - 2 attacks/day, I'm thinking (hoping) you don't have those "emergencies" that happen at inconvenient times.  

Laurie

   Didn't work for me.
[smiley=smokin.gif]

I have been receiving acupuncture for about a year now and it is a little too soon to see if there are any real effects.  My wife works for a chiropractic office and acupunture is offered as a treatment.  At first, I rec'd about 4 treatments and the headaches stopped for about 6-7 months (which I now view as a semi-spontaneous remission).  It does seem to lessen them a little although they started back up a couple weeks ago.  I had really hoped that this would do the trick but it is looking less and less likely as time goes on.  I have tried the water treatment (and they are right when they say that is hard to keep up over time!) Imitrex is of no value to me in that it does nothing but a bad taste in my mouth.  Doctor had me try Propanalol.  Tried that for a year or so, no real benefits so I stopped.  Hope others have had better luck.

Welcome to the board Brian!

I have a Polaroid somewhere of me with 52 acupuncture needles in my head and it did nothing at the time I tried it 6 years ago before I became chronic. (tried 7 days in a row)

I would be conservative on spending a lot of green on a guy you don’t know personally already. My current chiropractor that I had seen for over 2 years was also a licensed acupuncturist and gave me the treatments for free after my adjustment just to see if it would help.

I am very glad he is such a great guy that he would do that for me because he has personally seen me “spin” and genuinely wanted to help as a person (not as a doc).

Add; For that act of kindness, he got a sound system with stereo speakers in every room with wall volume controls for cost and he helped me install it! I really miss him now that he is retired. :(

Roland. ;)

brian wrote on Nov 30^th, 2008 at 4:27pm:

I have been going to an acupuncturist for a few weeks now, after having little success through the traditional health system.  I went specifically for the headaches, but she felt that what I described were not CH and has since been treating me for extreme muscle tightness in my upper back, shoulders, and neck.

I'm a big fan of acupuncture, although it's generally NOT easy to find a *good* one.  My acupuncturist does poke me for CH as I see him weekly anyway.  Twice I got hit by a CH while I was there with needles in, in various spots  :-?.  Of course acupuncture does not provide any direct and immediate relief.  My CH attacks are more frequent and worse when my shoulders and neck are extra tight.  I describe it a traffic congestion, which he tries to correct (I'm a tough case with muscles and tendons, and he calls me a 'world class champion').


Quote:

Since having found this sight about 2 weeks ago, I am now sure that I am suffering from CH, and have reported that to my acupuncturist.  She has agreed to continue with hypothalamus/autonomic nervous system treatment for a few weeks to see what happens.

I wonder though, why your acupuncturist feels you don't have CH?  Acupuncturists are not into diagnostics, and I tend to doubt yours knows about CH any more than mine because CH is so rare, and even neurologists and such still don't know exactly what's involved to cause CH........my acupuncturist, trained in Japan "old fashion" way, has been practicing 40+ years helping many "medically impossible" cases, and I'm his first CH patient.  And I honestly feel that if acupuncturists could somehow treat CH successfully, mine can do it but hasn't been able to.  And yes, there's definitely a limitation to what acupuncture or anything can do.  I feel malfunctioning hypothalamus may be a "hardware problem" while western and eastern medicine can help sort of *tame* it to lessen and prevent CH activities.


Quote:

I am a devout naturalist and strongly anti-pharmaceutical, and although I realize that the severity of the condition may well call for me to compromise, I am very interested in what kinds of alternative success other people have had, if any.

I feel the same way although not as strongly as you do and make no apologies for use of synthetic chemicals, and "natural" herbal remedies could be just as poisonous and deadly as well.  I do strongly believe in our bodies' natural healing system and try to use both western and eastern medicine as "tools" to manage my own health.  As for CH.......again, I feel it's mainly a hardware problem that science cannot yet figure out the cause or how to fix it any more than regenerating cells in the diabetic pancreas.

Back to your question.....besides clusterbusting, there are many dietary supplements and herbs you may want to experiment.  Remember that non-pharmaceutical doesn't mean "all safe and natural", and we need to try to understand our own bodies and phenotype.  For example, it's recommended to supplement magnesium in cycle.  But my diet is high in magnesium to begin with and perhaps because of the way my system works, anything excess of extra 250 mg can give me a bad GI reaction.  Too much of anything "good" can do bad things.

Somebody has posted a breathing technique a few times.......sorry I don't remember who (please somebody follow up...).  It is a usual qigong (chi-gong) breathing, to relax the body especially the head and breath deeply into the stomach, namely the small intestine, to send energy (blood, 'chi') throughout the body.  Blood=life.  Blood=oxygen.  It is said that if we spread the creases and wrinkles of the small intestine, it can cover a tennis court.  I think it's a real good thing to learn for our overall health.

The thing is though.......I put an equal weight on eastern medicine as western medicine toward the holistic approach starting with food, but CH attacks are so acute that something has got to work immediately to abort each hit.  There is no cure for this (yet).  So say, even if my acupuncturist found the meridian that works like triptans, I couldn't drive to his office to get treated at 4 AM.  O2 and other abortive methods are needed while we treat our bodies holistically.  My long winded [smiley=twocents.gif] ....forgive me if I typed what you already know.

Thanks guys.  Sorry to hear it's not likely to be very successful but I am feeling optimistic about some other options I've discovered since coming here.  I guess I'll keep up the acupuncture a couple weeks just to see and drop it if no success.  Anyway, I like it, it makes me feel all light and airy!

No one said not to try it Brian, just be prudent in your decision and cautious of a acupuncturist that does not have your wellbeing in their interest.. caveat emptor !

It may help, but don’t sell the farm before the chickens have a chance to lay some eggs.. I would say if it doesn’t work, don’t play the hand over and over!

I wish you to be pain free, but if that’s not in the cards, it's time to move to a more lucrative table..

Best, Rolo.. ;)

My eyes already on the door and the light's on in the next room  ;)

I first saw a licensed acupuncturist in 1987. I had been in episode for just under a year, had had clusters just under twenty years, resistant to every drug, sometimes responding to O2, sometimes hot showers, sometimes nothing. He actually used acupressure and laser acupuncture, but I had a small precursor leaving his office, and that was the end of the cluster, not even a twinge from there on. He used acupressure after diagnosing me using kinseology, ergo finding pathways, meridians et al out of sync. Since then, my occurance has dropped in half, once every two years, individual headaches are 2-6's, down from 6-10's, and he will stop an episode in anywhere from 2-8 weeks. I realize every ch is different, and
that I am only one person, but my experience is incredible.
Also, as with any profession, there are good and not so good practitioners. CAVEOT EMPTOR!!!
Conversely, if one practitioner does not work, don't neccessarily give up on the field, big mistake!  Its not like the first standard MD you see will cure you dead on, flat out, every single time. Keep trying.
Last, if you do go to an acupuncturist or kinesiologist, nothing says to cut out any treatment or therapy you are using with efficacy. I stay with O2 and showers, and lately have some success with Relpax, and very lately Zomig.    
Last for real this time, I do not recommend this avenue of treatment for anyone. I'm not a doctor, and would not take the responsibility. All I really can say is for 21 years, it has worked incredibly well for me, and I doubt that it is coincidence after all these years. If you are between the ch wall and the ch hard place, I do suggest you try most anything, and keep trying until something works. If anyone is in upstate NY, like hour north of Albany region, if you want I can give you his name and number offline, the rest is up to you.

I tried acupuncture for the first time 5 years ago.  After 3 treatments in a row, my cycle stopped completely and I was PF for 2 years.  I went back again with the new cycle and it was broken immediately with the first treatment.  I am now in a new cycle but the treatments are only lowering the severity of the headaches, not breaking the cycle.  The doctor did say that you can become sensitized to acupuncture so it may not work as well after repeated treatments.

The archieves are full of alternative treatment threads.  You can find discussions from over the years on almost any question you can present.

There has been very extensive research conducted by Dr. Goadsby, (over many years and still today) which verifies that the hypothalamus is directly involved in the effects of clusterheadache.  The hypothalamus of a cluster headache patient is slightly larger than normal.  There is much info on this in the archieves and numerous links provided. Also, information on the OUCH site.......look at the menu to the left.

If you look around through the items on our menu, you fill find an unbelieable amount of extensive information.

Do some homework....you'll be surprised at the amount of knowledge you'll gain.

8-)

fly gas:  When you say that you had been in "episode" for just under a year, did you mean in a "cycle" for just under a year or do you mean you think you are chronic?

One of the few things I know almost for sure with CH.

When you pick a GP or Neurologist or an alternative healer for the first time as a first time cluster sufferer, or to change docs. SHOP!!!

Maybe CH makes us stupid? It did me for a lot of years. I read so many posts where people choose their doctors with less methodology than they choose a damned automobile, then tell us they chose a Ford, and by gum, it didn't match their expectations, so all Fords stink.

Ask any practitioner if they have patients they work with who have CH, ask what their approach is, if they feel comfortable with working on CH.

If they don't have CH patients they are currently or have recently worked on, as CH is an "orphan disease", you can be pretty sure that they are not up on CH, or on the newest treatments. The average person, using 2000 numbers, goes to 4 doctors before they get a proper diagnosis.

Use the same standards if you choose to try alternative medicines, there seem to be enough anecdotal reports out there where it is probably worth a look, especially if you are not finding relief with whatever else you are doing.

It is frustrating to read "I tried "(whatever)'', it didn't work for me, doesn't work for anyone". That's like going to an MD and when he doesn't "cure" the CH first time, saying "I tried a doctor, it didn't work, so I'm never going to try another doctor ever, and no one else should".

Standard and alternative medicine alike, reading the hundreds of threads all we see is that some treatments work for some people, not for others, individual treatments work for some headaches or cycles, but will stop working for others, even headache to headache. Keep trying things, if you read a literate sounding post where something has worked, like the Pepsi, Red Bull, hot or cold showers, acupuncture, maybe don't stop what you are doing, but keep trying new things, telling your practitioner all the way.

Do we really expect every acupuncturist, MD, neurologist, chiropractor, herbalist, medicine man, massage therapist and Docinabox to be totally expert in every aspect of CH? I think not!
Be fair, be proactive, use your head.

Standard medicine is like the new car guy, good and bad ones out there, but some good laws and things that protect you, still, CAVEAT EMPTOR! Alternative medicine is like the used car guy, some protection, some good and bad ones out there, but my god, shop, do homework, hit Consumer Reports, take the used car to a good mechanic, run it around the block and out on the interstate.

And who says you can't have a nice shiny new car in the garage, with a good used one right next to it. Standard medicine does not contraindicate alternative medicine, nor vice versa. Just keep both sides in the loop.

Remember, none of this stuff works 100%, even the gold standard O2. Some is only dreamed to help 5-10% of Ch sufferers, maybe even less, maybe acupuncture is one of the treatments that only will help a few of us, but with posts like Nan's and Brians, maybe we can get a few people in there to try it, hopefully to try the right practitioner, and to try it with realistic goals and expectations.

BTW, when you read of something that has helped someone on this site, and the practitioner you call says they don't think they can help, BELIEVE THEM. Just keep calling around, get mad at your cluster, fight it with any tool you feel may work for you, and if one doesn't work, never give up, keep trying.

PF guys, its out there somewhere.

Chris

When you say that you had been in "episode" for just under a year, did you mean in a "cycle" for just under a year or do you mean you think you are chronic?

Donna:

I had been episodic from about 1972-1987,
but when I finally went in to see the acupuncturist, I had been going through an 11 month "episode", don't know if I was morphing into chronic, or just was in a particularly bitchy cycle.
Other than being utterly desperate, I probably never would have tried alternative medicine of any sort.

In hind sight, I wish I had had a bit more open mind, like in 1972. Still  , I read all the reports I could find, and as a certainty back then, none of this stuff we are talking about today worked, I remember my Neurologist telling me that Oxygen didn't work and he wouldn't give me a script.

I believed him.

Cheers,

Chris