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Title: accupuncture Post by inyoureye on Nov 9th, 2007, 8:03am any one tried it? |
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Title: Re: accupuncture Post by jackieg on Nov 9th, 2007, 8:28am Yup. Made it worse. Never again! |
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Title: Re: accupuncture Post by annar on Nov 9th, 2007, 6:41pm any other advice on this one? I was going to make an appointment for sometime in the next two weeks? [smiley=huh.gif] |
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Title: Re: accupuncture Post by thebbz on Nov 9th, 2007, 7:29pm Money spent.....no results. thebb ;;D |
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Title: Re: accupuncture Post by rolo65 on Nov 9th, 2007, 8:18pm on 11/09/07 at 08:03:00, inyoureye wrote:
And you’re afraid to stick yourself with a insulin needle? ;;D Save you're money, accupuncture did nothing for me. ;) |
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Title: Re: accupuncture Post by Linda_Howell on Nov 9th, 2007, 8:48pm 103 posts and you haven't read where it has been said over and over and over again that it has not ever worked for CH???? ::) |
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Title: Re: accupuncture Post by inyoureye on Nov 9th, 2007, 9:32pm on 11/09/07 at 20:48:13, Linda_Howell wrote:
Geez, sorry |
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Title: Re: accupuncture Post by slacker032 on Nov 10th, 2007, 2:35pm Made my cycle worse as well. |
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Title: Re: accupuncture Post by Jill on Nov 11th, 2007, 3:51am Hey.. I have only heard of a select few that have had any good results from acupuncture and even then, it was not long term. I have tried it and each time, it triggered a massive, long, intense hit and, yes, I tried it more than once. ::) And don't apologize for asking a question - you have no need to. I have been chronic for five years and I still do not know everything, no one does. Ask any question and someone will always be here to answer it or put you in the right direction.;) Good luck in whatever decision you make. Jill |
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Title: Re: accupuncture Post by black on Nov 11th, 2007, 9:41am i went 2 times.each time includes 15 sessions.the first time i thought it helped me a little bit.the pain in the eyebrown was tolerable.less tears even though the eye still red and i could breath easier from right nose strill.the second time nothing worked.it was pointless so i skipped the last two sessions.i really cant advise u what to do.it might give u some relief but in my case i cant say if it was this that helped even a little bit or another trick from the demon |
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Title: Re: accupuncture Post by mike on Nov 13th, 2007, 12:19pm I WAS a CH sufferer for 9 years. Often using up to 7 imitrex injections a day, even with the use of verapamil. The last CH I suffered from was the hour before having accupuncture, which was 5 months ago. PLEASE TRY IT. If you have tried it with no results I suggest trying a different accupuncturist. I'm curious about the methods all you nay sayers recieved. Can you tell me more about your treatment (needle placement, technique, length of time) |
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Title: Re: accupuncture Post by Guiseppi on Nov 13th, 2007, 12:57pm Well Mike you'll be the first to have posted that degree of success with accupuncture. The other hundred plus posters received no benefit. I know there's a lot I don't know about accupuncture, pressure points and relaxation techniques, but I won't use accupuncture for a compound fracture and I won't use it for a defective hypothalumus. Neither makes much sense to me. That being said, I hope (if you really had CH) that your remission lasts forever. These things suck. But be on guard, being the cynical pessimist I am, I'm afraid I believe your remission was typical CH morphing and NOT a result of the needles. Please stay up on the current meds and treatment options so you'll be ready if he decides to come back. Wishing you pain free peace... Guiseppi |
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Title: Re: accupuncture Post by mike on Nov 13th, 2007, 1:10pm Do you really suffer from CH? If so, you should understand that there really is no mistaking it for something else. Of the 9 years, only 4 of them was there a remission peroid, always landing between November and March. It would be quite the coincidence that in May (start of my typical cycle) they went away. I'm only trying to help others the way I have been helped. Instead of being so "cynical", as you put it, why don't you give me details about your treatment like I asked (or have you not recieved acupuncture?). I would hate to hear of someone NOT trying it because of your disbelief. |
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Title: Re: accupuncture Post by seasonalboomer on Nov 13th, 2007, 1:12pm on 11/13/07 at 12:19:24, mike wrote:
Mike, Welcome to the site. It isn't the first time that someone on their first post has claimed to be cured - albeit from a method that has rarely everbeen cited as having had any success in the past. As for the naysayers... You will have to excuse us, we actually do have the interest of sufferers in mind. Spend enough time here and you will see that there a lot of alternative treatments tried -- most of them unsuccessfully - thereby wasting a sufferer's time and potentially forcing that sufferer to ignore methods that have a broader level of success. There are a lot that are successful, and the great thing is that they stand up to scrutiny. For example - Kudzu. Who'd a thunk it? But several people tried it and success was duplicated repeatedly. Not always for everyone but enough that it makes it a viable alternative for some. Another example, Energy Drinks. Who'd a thunk it? But, several people tried them and some got results. More examples abound...seeds...shrooms.... But, never has acupuncture stood up to the scrutiny of having repeated success. The example cited in this thread was from a guy who it took 5 years to get the "method" to work. Knowing what many of us know about CH, 5 years is too long and CH changes on its own over a 5 year period. If it worked for you after once, wow! that's amazing. But for the many others who have tried it, including a practitioner on this thread, no one claims it works. So, sorry, hope your PF times continue. Scott |
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Title: Re: accupuncture Post by black on Nov 13th, 2007, 1:16pm as far as i can remember the accupuncturist put on me about 7 needles.one at the top of the head.another above the ear.one at the center of the forehead,one at hand at the base of the thumb.one over the upper lip and towards the right side of the head.another down from the right eye(ch on right side) and towards the nose and the last one between eye and ear(not familar with the word).i lied down about 25 minutes and then puled them off.the second way was about the same with the difference that the needles where attached to an electrical battery. could u be more specific?were u 9 years chronic or episodic?what was ur treatment with accupuncture?did u have any side effects when u took 7 injection in 24 hours?in a few words u became free so tell us more |
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Title: Re: accupuncture Post by mike on Nov 13th, 2007, 1:43pm My firts 3 treatments included electrical stimulation in two points on the top of my head along with 4 additional needles, 2 in my neck on the CH side, and two more on the side of my head near my ear, also CH side. Then he gently twisted them for stimulation, this only lasted about 20-30 seconds per needle. I was in and out in about 10 mins max. He also had a chart showing the different points, and was able to tell me there was watering of the eye, and runny nose without my saying so. Pretty good guess work... I doubt it! |
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Title: Re: accupuncture Post by black on Nov 13th, 2007, 1:51pm 3 treatments?u mean 3 sessions?what about the rest? |
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Title: Re: accupuncture Post by mike on Nov 13th, 2007, 2:17pm Sorry about that. The first 3 sessions were 2 needles in the neck, and 2 in the side of my head, both on the CH side. In addition to that, he put 2 needles in the top of my head that were electrically stimulated, slowly increasing the level of electricity until I said stop. There were 3 more sessions to follow, they were the same but he didn't use the electrical needles. Again, there was no waiting in any of the sessions. All he did was "twist" each of the 4 needles in my neck and head to stimulate the muscles in that area for about 20-30 seconds each. This he told me is the eastern way of doing it, which he thought to be more effective. As for the 7 needles a day, I wouldn't recomend it. I found it tiring and hard on the heart - it restricts blood flow , that's not good! |
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Title: Re: accupuncture Post by black on Nov 13th, 2007, 2:48pm i really hope mike this is ur solution and not another remission period.either way u are free from pain.hope it keeps that way |
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Title: Re: accupuncture Post by mike on Nov 13th, 2007, 3:01pm There is no doubt that acupuncture cured me. I could litterally feel the tension go away as he "twisted" the needles (although it hurt like hell for a few seconds). You have nothing to lose by looking into it further. It sounds as though the person that treated you stuck needles everywhere but where they were needed. The way I see it is there is cause and effect in everything. All the medication in the world will only treat the symptoms, not the cause of the problem. I wish you luck in finding your cause! |
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Title: Re: accupuncture Post by Guiseppi on Nov 13th, 2007, 3:06pm I certainly wasn't looking for a brawl. I don not have the gift of eloquence others possess, Boomer did a far better job of saying what I was trying to say. We work on a percentage basis here. With over a hundred posts on accupuncture, (using numbers provided by someone else I didn't do the search on this but that sounded about right), you are the only one to have had significant relief. I understand your fear that others would view my cynicism as a reason to not try something that would prove effective. My fear is they won't try the high percentage routes first. If accupuncture continues to work for you it'd be foolish to abandon it. I cling to my lithium and oxygen like a 2 year old and his teddy bear. I'll keep sqeezing the stuffing out of it as long as it continues to work. Sincerely wishing you many more years of pain free time. Guiseppi |
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Title: Re: accupuncture Post by black on Nov 13th, 2007, 4:01pm sorry mike but how did u jump right now at the conclusion that with accupuncture u found the cause of the problem??????what my accupucturist told me was that he tried to ease the trigeminal nerve.he never promised any cure.just relief and in case that happened i had to repeat it twice a year every 6 months.he was honest i can tell.u found the cure with 5 sessions?????as for medications cant treat the cause yet.and after this i really nedd to ask u.what makes u think its not a remission period but surely a cure??pls be specific |
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Title: Re: accupuncture Post by mike on Nov 13th, 2007, 10:08pm Black, After 9 years of them, there was never a year I didn't have them in May (the month I first tried acupuncture). If I'm not mistaken I had 3 that day already, maybe 4, before going to see the acupuncturist. I think the odds of going into remission at that point are astronomical given my history with CH. As for the cure, maybe that was a bad choice of words. I suppose my way of looking at it is this. If you break your leg you can either get a cast to heal it, or take enough drugs to kill the pain. That doesn't mean that you can't break your leg again though. For me, the acupuncture was the cast. I am curious though, what signs (if any) do you get when a headache is first coming on. |
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Title: Re: accupuncture Post by atcevik on Nov 15th, 2007, 5:25am 2 years ago, the attacks started, it was nothing like I knew and seemed like nothing nobody knew. I was going crazy, I thought of nothing but just felt the fear of the ache coming back. I went to a doctor and he told me the medicine required to ease the pain, which were mostly related to blood pressure and I didnt want to take these, even the inhaler, as I thought and still think that these medicine will be a sacrifice of health, and will be encountering different problems after some time, if I used them. I then started to have acupuncture sessions. The first session was during an attack, although I didnt think it would be useful, even the pain from the needless was distracting the headache, so it was not a problem. After this session, the ache just went. Maybe attack was just expired, or maybe was the needles. Anyway, I went on with acupuncure, as I had nothing more to do. After a few sessions, the ache started to lose its strength and faded after some time. After two years, previous month the attacks started again. The first one was very strong, and the second day I started to have the acupuncture sessions again. And I continued on having the sessions. I have been having this ache for 5 weeks now. But it is nothing like the one that occured 2 years ago. The strength is weak, I can even wait for the pain to pass sitting on my desk at the office, I can bear it, I can attend meetings during the ache, and yes it is cluster for sure. What I think is acupuncture helped me very much, the attacks didnt go away, but were really weak comparing to my previous experience. During 5 weeks, I only woke up once, though on my previous attack period, I do not remember sleeping at all. So, please, please give it a chance. It worked for me. Do not expect immediate results after one session. You should experience a few sessions before seeing any effect. You must be careful choosing about the practitioner, it would be good to find someone specialized on migraine headaches if not cluster headaches because acupuncture practice is not an easy to learn practice, someone specialized on losing weight may not be the one that knows the real mechanisms. Please try it. |
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Title: Re: accupuncture Post by seasonalboomer on Nov 15th, 2007, 6:31am okay that's three. two of the three making us aware of this on their first post. scott |
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Title: Re: accupuncture Post by atcevik on Nov 15th, 2007, 7:02am The reason for this being my first post is, if I can explain it correctly, While in the remission period, I do not want to think anything about that nightmare. While the aches are active, I dont want to think about the attacks until it hits me. And during the attacks, you know. I guess that you are cynical because you suspect me of being a member of the chinese acupuncturists advertisement organization or something :), which I cannot prove otherwise, but what if I have experienced this and am experiencing the situation I ve told you ? I havent tried the medicine my doctor told me to, so it is your choice to try or not to try the acupuncture. I am not trying to sell you anything, please do not act like I am. I do not think that you have the right to criticize me because this is my first post to the board, I just wanted to share some information that has done quite good for me. |
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Title: Re: accupuncture Post by inyoureye on Nov 15th, 2007, 8:06am And that's all we ask. Everyone is different, all we can do is share our experiences and let the person asking the question decide for themselves. Case and point- Through this thread I have learned that although this may work foe a few, there are far more folks that it not only did not help but made it worse. With that, I thank everyone for their input and time but I am going to stay with my Trex/Oxy routine. Thanks again everyone. |
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Title: Re: accupuncture Post by black on Nov 15th, 2007, 9:09am Quote:
i just share my experience scott on this thread.i dont know about the others.is it ok with u? |
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Title: Re: accupuncture Post by seasonalboomer on Nov 15th, 2007, 10:28am on 11/15/07 at 05:25:21, atcevik wrote:
You're free to state your experience. Understand there are those of us who have contributed to this forum for a long time. And while that alone doesn't qualify us as resident "cynics" there are certain patterns of behavior that repeat themselves over and over. A post like yours that suddenly pops up and criticizes treatments that are commonly accepted as first line treatments (in your case you indicate that you have not even tried them prior to dismissing them) and then go on to trumpet the incredible value of a treatment that has (in many cases) been repeatedly discussed in this forum. And, prior to this thread, never been identified as being of enough value for a sufferer to spent valuable resources and expose themselves to almost certain continued CH pain. Your post has all the usual elements that put the radar up. Not as a "salesman" but as someone who is to watched. You see, credibility is important everywhere on the planet - even the internet. On your first post you've chosen to put something out there without having built any credibility whatsoever. And the structure of your post matches those with little to offer who want immediate credibility just because the happened by. So, my apologies if you feel offended that I have impugned you in some way. But I do that sometimes. The question will be if you stick around and tell us how it continues to be successful, or learn more from others, and become a contributor to the community and not a drive-by poster. Scott |
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Title: Re: accupuncture Post by atcevik on Nov 15th, 2007, 4:28pm Scott, No offense taken. I understand that you have been contributing the community for quite some time, and I have not. I am not a doctor, so I am in no place to criticize any treatment. I tried to explain my situation. When my doctor told me to use medicine related to blood pressure, I was horrified, that is my approach towards even antibiotics, and do believe that every drug has its side effect and what I was told was these were serious drugs, used by heart related cases. I will try to explain it more thorougly, in order to clarify the issue, and I would like to do that not to raise my credibility, as I do not need any credibility, because my goals for posting here did not include trying to establish a long term relationship, but just telling people that this might be one of the solutions, and this thing has turned a complete miserable period of my life to a tolerable one. I ve posted to the forum to share my experience, in order to make people think that this may be working for them, as it had for me, or at least I believe it had. After I was prescribed the medicine mentioned, I started to think about it seriously, but really felt uncomfortable with taking this medicine, although the pain was unbearable, I did not buy them, at least postponed to buy, until I have talked to one of my close relatives, who by my chance also is a medical professor who is specialized in acupuncture and who has published a book about acupuncture. After discussing the issue, he also told me to try the other alternatives before considering taking such strong drugs. During an attack, I called him and tried acupuncture, and the story went on like my previous post. In my case, I was fortunate enough not to pay for the treatment. I was not a strong believer of alternative medicine until I have experienced the changes in the attack strength, so I do not think that this has anything to do with placebo effect. During the attacks I ve described that had happened 2 years ago, somebody sent me the link of this community, I entered the site and read the home page stories, and I was really depressed, as the sentences represented my situation better than I could even tell myself, then I just closed the browser. After experiencing my second period, I just browsed to the site again, and what I read, was far more stronger from what I have been feeling on this second period, that I felt that I did not belong, but felt sorry for the group, the group that I was once in and pray that will not be in again. I thought about telling people, telling suffering people about my case, which has also not been believed by my previous doctor. These are the reasons I ve posted, and if what I just have been telling you is not enough to make you think that at least my case turned out to be like this, I can do nothing more, but am relieved as I ve done my duty to express my freedom, at least from one period of attacks. This cure may be just for 1/10th of CH patients, or it may be just for me, but it has worked, and you believing or not does not change anything for me, but may change for you or anybody who is reading this post. Another thing I ve been doing, during this period, was going to sleep early and praying to god for not giving me a pain that I cannot handle, and breathing o2 from time to time, but I think acupuncture is the one that had the influence. This illness, for me, is not just a painful thing, but also a professional threat, as I am a manager under time constraints who has to have continuous meetings with people I know and people I do not. Not only do I need to appear normal, but also I need to think during working hours. I guess this applies to most of you. So, aside from wanting to get rid of this attacks because of the suffering, it also is a threat for my career. So, Scott, I am a normal person, who has experienced the horror and thinks that he has seen the light at the end of the tunnel, trying to show the residents of this tunnel his light. If it is your light too, I do not know. Just wanted to share. Listen to my words if you would like, or question my credibility, my goal, which may include raising the popularity of acupuncture in Turkey that may benefit my close relative by posting it here (if it makes sense to you), is up to you. |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 4:45pm I have been reading this thread but refrained myself from posting because I didnt want to create an argument although I am an acupuncturist . I practice it everyday as part of my medical practice in my surgery and I have had a lot of success with it treating various conditions. However, I know for a fact that it would not work for CH and this is based on scientific understanding of acupuncture itself. I have read here that a few found some benefits therefore I didnt want to speak negatively to dash their hope, I know what it is like to believe that one has found the magic cure ... However, I believe I should share my knowledge here so that others thinking about it can make an informed decision whether to invest money and time into this treatment. Acupuncture is a treatment based on stimulation of different nerve points. By accident, ancient Chinese found that pressure applied on certain points in the body will cause a "force" to be transmitted along some nerves to another point and cause certain effects there. One easy example is the " funny bone " in the elbow, hit that and you will feel numbness and tingling down the arm into the little finger although you havent touched the little finger. This sensation will continue for a couple of minute then it will stop and everything returns to normal, no harm done. Another example very commonly known by all the Chinese people is the ears and the earlobes. If you live with Chinese at all, you will see them pinching the ear/earlobes whenever they feel pain, most commonly when they burn their fingers cooking! It actually reduces the pain sensation. Try this trick next time you scorche yourself . One more nerve point is the thumb and the middle finger, press/squeeze them together and it will reduce the feeling of stress and anxiety. In fact, this is the pose one often seen Buddhists practice because it calms them down. Take a closer look next time at a statue of Buddha, you will see he often sits meditating with his finger/thumb pressed together. This is what acupuncture is like in the Chinese culture. Its entertwined into their lives. Everybody practices it without knowing, but most do not have the knowledge of how they work. They intrinsically know it works and believe that it will work for anything and everything. Ah yes, placebo effect can be very powerful in some cases. Acupuncture works by nerve conduction from one organ/point to another, by direct stimulation of the nerve points, as explained above. The practitioner stimulates a nerve point and sends physical signals along to another part of the body, indirectly stimulating this too. Its like flipping a switch on the wall and turning on the light globe on the ceiling. Nerve point can be stimulated by many different mean, by pressure ( acupressure ), by heat ( with a burning incense ) , and by pain ( with a needles ). Nerve pain travels the quickest and is the strongest and longest lasting stimulation therefore most acupuncturists use needles. However, the effect doesnt last that long. Once the needle is inserted, it gives out an immediate strong impulse but this lasts only a few seconds, at best a couple of minutes. This is why the acupuncturist needs to sit there and uses his fingers to gently twist or flick the needles, to send continuous waves of impulses to make the effects last a bit longer. However, once the needles are removed, the effect slowly wanes after a couple of hours. This is why acupuncture never works with one session. It needs to be repeated again and again to maintain the effect. The light globe stays on only as long as the switch is pressed down, as soon as its off, the light globe will turn itself off. Some might give a glowing haze and remains hot for a while after being turned off, but this wont last long. The same thing happens in acupunture. So why wouldnt it work with CH? CH is caused by a malfunctioning hypothalamus. This body clock for some unknown reason goes "crazy" and produces abnormal signals to different organs in the body. It causes an abnomal amount of serotonin, melatonin, dopamine, testosterone etc to be released. These hormones and neurotransmitters in turn cause an effect on the blood vessels and autonomic nerve stimulation leading to what we all know as a CH hit. The hypothalamus will malfunction for a while then manages to "reset" itself back to normal. Its not yet known why and what can set it on and off. In the chronics, the hypothalamus is perpetually malfunctioning. There are nerve points that can affect the hypothalamus, the trigeminal nerve and the autonomic nervous system. In theory stimulating these nerve points can have some effects. However, no one knows what sort of effect it will have. This explains why in some people it actually made CH worse for them. Furthermore, as explained above, the effects achieved by direct and physical stimulation can not be sustained. At best it may reduce the immediate pain, at worse it can aggravate the whole system. As soon as the needles are removed, any effect on the hypothalamus or trigeminal nerve will fade and the whole thing will revert to its current abnormal state again. What I have found interesting though is that many so called acupuncturists dont know how it works , why it works and what sorts of implication it has. I would love for these people who say their acupuncturist cured their CH to invite them to come here to have a debate with me as to why and how they believe that it would work and what is their experience treating CH. I really dont want to dash someones hope that they might have found a cure but I challenge any acupuncturist to a formal public debate here as to how well they understand CH and whether they could explain how it works for CH. Until then, anyone coming here trying to tell me that acupuncture can stop CH hits or abort the cycle or cure them, I would say its a fluke and its more likely just the cycle finishing itself. Invite your practitioner here for a debate then we will talk. |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 4:59pm Mike and Atcevik Please understand that I dont doubt you at all, I am accept that you both strongly believe that acupuncture cured you both of CH. I doubt your practitioners though. Would either of you be able to invite him here to debate publically with me as to their knowledge of CH and how acupuncture would work? If they can demonstrate to me and the others here through the debate that they have extensive understanding of CH and give scientific explaination as to how they make it work, I will publically apologise for my ignorance and will chant for acupuncture as first line treatment for CH from now on. Edited to add: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1190428280;start=0#16 Read this thread and understand why I would like to talk to the practitioners. No acupuncturist has ever come here and talked about how the therapy works for CH, if they claim that it works. |
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Title: Re: accupuncture Post by seasonalboomer on Nov 15th, 2007, 5:19pm Atcevik, Thank you for your explanation. If you feel that acupuncture has worked for you then I'm fine with that. The fact that you also use O2 and have attempted to make sure your sleep patterns are consistent have probably been a contributor to your relative improvement in CH. I do have issues with regard to those that freely criticize conventional meds (without trying them) yet easily accept various alternative treatments. If you have pre-existing conditions (as many do) that do not allow you to use them then that is one thing. But many of us experience incredible improvements in our CH management as a result of these meds. Yes there is the potential of side effects. But there are also potential side effects from long term use of diet sodas. So, like you and your defensiveness regarding your claims regarding acupuncture, I'm equally defensive regarding the matter-of-fact dismissing (and dissing) of standard meds and treatments that help so many of us - with powerful statistics to support our claims. Scott |
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Title: Re: accupuncture Post by mike on Nov 15th, 2007, 8:28pm For anyone listening to the crazy Canadian. This is a description taken from this site, it can be found under the "cluster traits" section. During a cluster attack, blood pressure elevates, heart rate increases, the body overheats, a ganglion lump on the back of the neck is quite common which becomes inflamed during an attack and diminishes when the attack subsides. It is this lump that seems to be the cause of the pain. What causes the lump.... I can't say. However, what I can say is that for me, this lump was still present all through my CH cycle, just not nearly as noticeable until an actual attack. It is right there that my acupuncturist put one of the needles. Along with this lump on the back of the neck, if you pay attention next time you get a CH you may also notice a much smaller lump on the side of your head, it may also be very sensitive to preassure. That is where another needle was placed. I believe these 2 locations to be the most important when having acupuncture done. I am not an acupuncturist, but I see there are a couple out there talking now. Perhaps some insight to these 2 locations could help us all out here. Please note, the spot on the back of the neck is also directly related to the runny nose, and tearing eye. As I mentioned earlier, my acupuncturist showed me a chart of this before I had a chance to tell him of all my symptoms. I would just like to add, for Annette, the acupuncturist I seen was also a chiropractor, although he only treated me with acupuncture. He gave me an examination prior to treating me, and he took notice of the bump and tension in my neck, and followed that up to the side of my head. He actually had never heard of CH before. He treated me based on the symptoms of the headaches, and most likely wouldn't even remember the name of them. There was also no claim that he could in fact help me, but help me he did. |
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Title: Re: accupuncture Post by Kevin_M on Nov 15th, 2007, 8:47pm on 11/15/07 at 20:28:57, mike wrote:
There is still pain, runny nose, and teary eyes without any lumps to be the cause or direct relation. Cause and effect seem backwards. |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 9:02pm Mike, That cluster lump is one of the ganglions of the cervical (sympathetic nervous system) chain. There is a whole thread on it, if you read the thread properly and take a closer look at the diagram posted you will see there are several of these ganglions, each sitting at a different anatomical position. Not all CHers have those lumps and those who do have them at different spots. They become painful during a hit because the autonomic nervous sytem is activated. These nerve bundles start to fire and the ganglions get hot and swollen causing nerve pain. However, they are not the cause of CH, they are merely one of the many things that get affected during a CH hit. Its the hypothalamus that starts the whole thing going. During a hit, one gets massive vasodilatation and this itself can also cause pain. On top of that if you get your trigeminal nerve squashed enough you get pain there too. When your acupuncturist puts needles into these lumps, he is essentially doing the same thing as many of us already do to reduce the pain, such as applying ice there or putting pressure there. This does reduce the pain, but it is by no mean curing or treating cluster headache. I know that you are not an acupuncturist and I dont blame you for believing in it. I can tell though that as a doctor and an acupuncturist myself I honest do not see how stimulating these gangliong will cure CH. I ask you please next time you see practitioner to ask him to come here and discuss with me as to how much he understand CH and how his treatment works as a cure. Maybe then we will be able to see more clearly who is right and who is wrong in saying that acupuncture doesnt work for CH, much less being a cure. I am very open to new ideas and I certainly dont know it all, but I do know my stuff and I need concrete proof prior to placing my belief somewhere. |
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Title: Re: accupuncture Post by mike on Nov 15th, 2007, 9:22pm I could ask him the specifics about why he thinks it works. I don't know enough about the terminology and the whole process of the headache in general to give an accurate reply to your last post. In your opinion though, is it not possible that the lumps are some sort of "malfunction" caused by something else, but that the lumps themselves put the preassure on the nerves which then trigger the pain. While he was doing the acupuncture I could feel the lumps and tension going away. By the third treatment the lump was non existent, and continues to be, along with the pain. If anyone has the same symptoms in their neck I would strongly reccomend looking into acupuncture. This may be just one form of cluster headache... who really knows. |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 9:22pm Mike, I am sorry to say but you have been contradicting yourself. First you said this on 11/13/07 at 13:43:39, mike wrote:
You were saying here that your acupuncturist knew exactly what he was doing and how it would work. Then you said on 11/13/07 at 15:01:24, mike wrote:
You claimed very strongly here that acupuncture done by that particular practitioner cured you and that others just didnt know what they were doing. You also claimed that he treated the cause of CH, not just symptoms. However, now you are saying on 11/15/07 at 20:28:57, mike wrote:
So now you are saying that he doesnt know CH at all, he just noticed the lumps and guessed that maybe putting a needle in there would help. He was basically treating you by guessing based on the symptoms you told him and even he couldnt claim that it would help, you walked around shoving down peoples throat that it cured you ? ::) As I said, interesting to see what eventually comes out when such claim gets challenged! |
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Title: Re: accupuncture Post by Kevin_M on Nov 15th, 2007, 9:30pm on 11/15/07 at 21:22:30, mike wrote:
Not sure the trigeminal(sp?) nerve is related to the back of the neck. How would one get clusters with no lumps? |
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Title: Re: accupuncture Post by Jonny on Nov 15th, 2007, 9:32pm on 11/15/07 at 16:28:27, atcevik wrote:
Dude, If you dont plan on rowing the fucking boat then leave now.....we have no use for you! |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 9:34pm on 11/15/07 at 21:22:30, mike wrote:
By all means please ask him how he thinks that would work but I fail to see how he will be able to explain given the fact that he knows nothing about CH. Better still though, please invite him to come here so that I can ask him directly myself. Thank you very much for doing it. Its much appreciated. As to your second question, no I dont think so. As I explained above, the ganglions get activated but they are not the cause. These ganglions dont press on any other nerves because they are nerve bundles themselves. Next time you get hit, put ice on the same lumps and you will feel the pain and the tension going away just the same, many here are already doing that for themselves. However, I hate to tell you that it is not a cure, when your hypothalamus gets out of whack again the whole thing will restart. There are medical treatments where doctors inject these ganglions with local anaesthetics ( google sphenopalatial injection if you want to know more ) and for some it worked by reducing the pain for a little while, but they all still have CH and after some time the hits restarted just as bad. Its not a cure. As to why since you had the last acupuncture you havent got hit, I would say its likly to be coincidental. Many people here can suddenly stop getting CH for a while then it may return just as suddenly as when it left. For your sake, I pray that yours go away for good but in the mean time, please do not walk around telling people that acupuncture cured you for sure, because its not accurate. |
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Title: Re: accupuncture Post by mike on Nov 15th, 2007, 9:42pm Nice way of twisting things, are you an acupuncturist or a journalist? Not trying to start anything here, but you really took what I said out of context. Please allow me to explain a bit better. He did his examination, finding the lumps and feeling the tension he thought this to be the point of origin. He then proceeded to do the acupunctre. Afterwards showing me the chart that showed the other symptoms of the CH, by this I mean the runny nose and tearing of the eye. At no point in an earlier post did I say that I went in, told him what I have, and him say "I CAN CURE THAT". There was no contradiction in anything I said. As for others not knowing what they're doing...well, I suppose the results speak for themselves. |
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Title: Re: accupuncture Post by rolo65 on Nov 15th, 2007, 9:46pm on Today at 3:28pm, atcevik wrote:I do not need any credibility, because my goals for posting here did not include trying to establish a long term relationship on 11/15/07 at 21:32:26, Jonny wrote:
Well if not quite eloquently said. If you come here for support form fellow sufferers you might well be expected to give a little of your self for the help and camaraderie of the people you expect to give so freely of themselves. Everyone expects a little gratitude, and the experience of corresponding with people in the same boat as you will help keep you afloat. Rolo... |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 9:58pm on 11/15/07 at 21:42:01, mike wrote:
Mike I am not here to argue with you. I simply pointed out that first you came here telling people that acupuncture cured your CH, you claimed that your acupuncturist is very knowledgable and he treated the cause of CH, not just symptoms, and that acupuncture works for Ch for sure, if others didnt get good result it would be because their acupuncturists didnt know what they were doing. Yet when I asked you to invite him here to discuss acupuncture as a cure for CH, you then said he knew nothing about it, that he was just treating symptoms, that in effect he didnt really know what he was doing either. All acupuncturists learn where the nerve points are and what they are connected to. Therefore when he saw those lumps and found that they were painful to touch to you he tried by putting needles into them to see if it would work, he wouldnt know why or even if it would work at all, it was simply trials and errors he was working on. Afterwards you told him that you felt the pain fading so he took your words that it seemed to work. He knew from learning about nerve points what these nerves are and what they would be linked to and that they could cause tearing in the eyes. This knowledge has nothing to do with understanding how CH works. |
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Title: Re: accupuncture Post by rolo65 on Nov 15th, 2007, 10:12pm If you think an acupuncturist will cure you of CH your crazy. It may lower your stress or relax tension but by no means will it prove to be a cure. I have had over 50 needles at a time and no effect. I would also wager that over 50% of us chronics have tried it without success…Rolo. |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 10:20pm on 11/15/07 at 21:22:30, mike wrote:
If you spend more time reading the Board you will know that applying ice or heat or hard pressure on the ganglion lumps ease the pain and the tension too. Many people here dont get the ganglion lump but they have CH none the less. The ones who do often experience the same thing with their lumps that its there during the cycle and becomes painful during a hit, yet it slowly fades away and disappears when the cycle ends. This happens without any treatment whatsoever. Lastly, there is only one form of clusterheadaches. Its a very complex condition and it involves many systems in the body so it can manifest differently as well as it can morph in its presentation at times, but still there is only one form. |
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Title: Re: accupuncture Post by mike on Nov 15th, 2007, 10:26pm I never once said he knew how it worked. Nor did I say that he said he claimed he could cure CH. I am the one that said he cured it, then later wrote that that was perhaps a bad way of putting it, but wrather he healed it much in the way a cast works to heal a broken leg. That doesn't mean you can't break your leg again though. I am also not saying that it wasn't guess work. Maybe it was, but it was still an educated guess. I just find it much more than coincidence that in the middle of my worst time for headaches he "stumbles" upon the lumps, treats that area - which also affects the nerves connected to the nose and eye - and voila, my headaches go from 7 to 0. I can drink alcohol, I smoke, I do everything the way I used to before these things hit me, and not once have I had any sign of a CH. I'm just trying to bring some insight into this. You have no idea how many times I would take my injection and wait for the pain to stop. Every time it did I would think about the people out there that don't have access to such medicine and my heart went out to them. I can't imagine what life would be like for constant sufferers that have no way out. I felt in some way guilty for not suffering anymore, and not telling people of what worked for me. Instead of having people say "thanks, maybe I'll try that" , it's been nothing but bickering the whole time (not just from you). If I have in any way offended you, or anybody else, I sincerely appologize. I am under the impression that I am causing more frustration than anything now, so I am going to gracefully bow out of this message board. I wish you all luck with the terrible beast you have been cursed with called CH. |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 10:39pm Thank you very much Mike for honestly sharing with us what you thought cured you. However, had you initially posted saying what you just said now, that you tried acupuncture and although the practitioner had never heard of CH before, he made some intelligent guess work and tried anyway and it seemed to have helped, but you are in no way sure that it actually worked and wasnt just a fluke, you would not have received any negative reactions. I dont want people to say " thanks I will try it" because it costs a lot of money and time. I wouldnt recommend people spending money on things I know for a fact wont work. Its unethical to do so. I dont think what I posted would be classed as bickering nor was it frustration. I was honestly hoping for an intelligent discussion with you or with your practitioner. I was rather disappointed to find out that it was based only on guess work and assumptions. I do not wish to see you leaving as I can see that there is a lot you can learn by staying and reading some more. Knowledge is the best weapon against this ailment. |
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Title: Re: accupuncture Post by mike on Nov 15th, 2007, 11:00pm When you think about it, most great discoveries are made by accident. I'm not saying that the methods used by my acupuncturist will work for everyone. I do find it interesting however that nobody else on this board has said they recieved the same treatment as me (in the same areas) with no success. As for the waste of time and money, I don't know what others are paying around the globe, but 6 sessions of acupuncture cost me less than what I used in imitrex most days. I figure that (if done correctly) no real harm can come from trying acupuncture, and that if it works, the cost will take care of itself in no time. I realize that others have claimed acupuncture to make it worse, but really, how much worse can it get when you have headaches that have been nicknamed "suicide headaches". |
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Title: Re: accupuncture Post by Annette on Nov 15th, 2007, 11:23pm Mike Its very different when you say to someone : I tried acupuncture and it seemed to work for me although I am not sure, you can try it too if you want bearing in mind that it most likely wont work at all and it might even make it worse; to saying to someone : Acupuncture cured my CH and no one could tell me otherwise and if it didnt work for you its because your practitioners didnt know what he/she was doing. Thats the difference between being informed and being misled. |
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Title: Re: accupuncture Post by mike on Nov 15th, 2007, 11:35pm People, even doctors, are often times wrong. When I hear people say they tried it but they put the needles in my lip, between the eyes, etc. what am I to think when for me 4 needles in completely different spots worked. A cast is a cast even if it's on the wrong leg, but it won't work. It sounds as though everyones experience with acupuncture was different than my own, but the placement of the needles was also different. What should I believe, that the other acupuncturist are treating the right area and that I just got lucky, or it was crazy coincidence??? |
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Title: Re: accupuncture Post by Kevin_M on Nov 15th, 2007, 11:49pm It is difficult Mike. Others have claimed their acupuncturist knew it correctly by hitting the right spot in their ear. Another by small electrical shocks to the needles. Different stories of how it happened with acupuncture make it hard. It is tough to relate to say what is happening. |
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Title: Re: accupuncture Post by mike on Nov 15th, 2007, 11:57pm Kevin, While I haven't read of that, I'm sure it's true. Isn't that part of the beauty of living in this day and age when we can share such ideas with people all over the world in minutes. The problem is when people trash talk others, cut and paste previous statements-only to twist the meaning, and as far as I'm concerned just plain argue. There may be 100 different spots on the body that can eliminate CH...who knows. But as long as people are critisized for stating which ones work and which don't, how's anyone to ever know. I'll bet if everyone who's ever tried it gave details instead of just saying "it doesn't work, don't do it" you would start to find similarities that could benefit many. |
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Title: Re: accupuncture Post by Annette on Nov 16th, 2007, 12:04am Mike What your acupuncturist achieved by putting needles into the ganglion you can do yourself by applying ice to it, and its free, ice doesnt cost anything. Now its your turn to be skeptical and I can fully understand that. The only way you can tell for yourself whether it was the greatest cure on earth that you discovered or was it a crazy coincidence is for you to wait until the next cycle, then you can return to the same acupuncturist, get him to put needles in the same spots 3 times and see whether it will work again. In the mean time, please dont tell people " you should try acupuncture, it cured me for sure, if you try it and it doesnt work its because your acupuncturist doesnt know what to do so keep going to different ones until it works ". That is very misleding advice and it can cost people a lot of money for nothing. |
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Title: Re: accupuncture Post by Annette on Nov 16th, 2007, 12:10am on 11/15/07 at 23:57:17, mike wrote:
If you believe what I posted to you is "trash talk" and that I cut and pasted your previous statements with only the intention to twist your meaning then I have nothing more to say to you. Good luck and goodbye. |
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Title: Re: accupuncture Post by atcevik on Nov 16th, 2007, 3:37am Anette, I will try to get my practitioner to respond, though I cannot promise. I am not familiar with mechanism of acupuncture, so I am not able to reply to you in anyway. If you are right and acupuncture is not the thing that made the pain bearable, then either tt is placebo, or there is something else I have been doing, will try to find out, but do not think this is the case, so although it may be hazardous for me to find out that the one helping was not acupuncture if it was placebo, I will try to learn about this. As for the nice person who told me to get off the boat, I would recommend him to read my post again, this time more carefully. What Ive written was not that I would not want to have any relationship. I was explaining why I ve posted the first message, the goal of the first message, not my goal, which post was not for establishing a long term relationship, which was a sentence to reply to Scott who said that I needed to establish some credibility. I was thinking that I would be misunderstood from that sentence while I wrote it, |
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Title: Re: accupuncture Post by Annette on Nov 16th, 2007, 4:34am Atcevik Thank you very much for asking your acupuncturist to join the board so that we can all learn how his treatment may work for CH. I understand that he might say no but I thank you for trying. I have no intention of driving anyone off nor putting anyone down. I simply shared my knowledge and experience as a doctor who has a post grad degree in acupuncture who practices it daily and my understanding of CH and why I dont believe acupuncture can cure it. I would love to have a discussion/debate with someone who is formally trained in acupuncture who has tried to treat Ch with some success to learn about what they know and how they do it. I believe such an opportunity will be beneficial to us all. |
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Title: acupuncture Post by cluster on Nov 23rd, 2007, 4:48am Thank you very much Annette and everybody else! I think this is a very good and interesting discussion. I have no experience with acupuncture nor do I have any opinion about acupuncture. Here are some links with some more information about cluster headache and acupuncture and generally speaking I don't trust any information I find on the internet. :) => Low CSF met-enkephalin levels in cluster headache are elevated by acupuncture. (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=2529227&ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum) => Acupuncture For The Management Of Cluster Headaches (http://www.medicalacupuncture.org/aama_marf/journal/vol14_1/case1.html) => PubMed search results acupuncture + cluster headache (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=DetailsSearch&Term=(%22acupuncture%22%5BMeSH+Terms%5D+OR+(%22acupuncture+therapy%22%5BTIAB%5D+NOT+Medline%5BSB%5D)+OR+%22acupuncture+therapy%22%5BMeSH+Terms%5D+OR+acupuncture%5BText+Word%5D)+AND+(%22cluster+headache%22%5BMeSH+Terms%5D+OR+cluster+headache%5BText+Word%5D)&WebEnv=0ECJJtYvUdhQg3X2HerY29fIMojyNdd8JW4rNH6qnItGKZOVTvO5B0ZeU2wJtNbmXFtlJqPRS7DCsrp%4026455D5D6FCC4DA0_0111SID&WebEnvRq=1) pf wishes! Friedrich Edit for grammar mistake. Sorry, I hope I got it correct now. |
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