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colojd
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Accupuncture
« on: Aug 11th, 2004, 8:05am » |
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Hi: I am fairly new here. My husband has been a sufferer of clusters since last July.
He recently was prescribed oxygen. This helped stop his headaches within about 10 minutes. Only problem is that he has to lug around the oxygen whereever he goes. He has used Migranol but this seems to be having less effect. Doctor just prescribed a type of steriod yesterday because in addition to the clusters, he thinks that my husband is getting a tension headache on top of it.
Both of us want to see him out of pain but don't want him to be using strong medications endlessly. A friend suggested accupuncture. Anyone had relief with this method? We want to try something more natural, if possible!
Thanks
Joyce
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IndianaJohn
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Re: Accupuncture
« Reply #1 on: Aug 11th, 2004, 8:16am » |
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Hi Joyce,
I am not aware of any success with accupuncture. One thing to try is to switch from migranol to imitrex. It is one of the preferred abortive therapies after O2. I use the nasal sprays myself, other use the injectors. Also he might need to be on verapamil in addition to the steriod (I assume he's taking prednisone). Also, melatonin works for many as a sleep aid to get through the night without a CH attack.
Best wishes,
John
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alleyoop
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Re: Accupuncture
« Reply #2 on: Aug 11th, 2004, 8:53am » |
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Hi Joyce,
I'd like to pretty much just echo what John said. I have yet to hear of any verifyable success stories with acupuncture.
One note though! If your hubby has been prescribed prednisone, make sure his doc has got him on a taper. If not slowly tapered off of a steroid, there can be serious consequences down the road.
The best thing you can do for your husband is to educate yourself. Become armed with information. Read as much on these boards as you can. Read the info on the left. Follow links. Selectively print out info. Become more educated than his doc on clusters (not that hard to do). Educate his doctor! Take printed info with you to appts.
CH is a serious disease that has been medically documented as the most intense pain known to humankind! The best thing that the two of you can do is get proactive! And don't forget to visit the Supporter's Corner on this web site.
Wishing you all the best....................
................................................alley 
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Prense
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Re: Accupuncture
« Reply #3 on: Aug 11th, 2004, 9:41am » |
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on Aug 11th, 2004, 8:16am, IndianaJohn wrote:| One thing to try is to switch from migranol to imitrex. It is one of the preferred abortive therapies after O2. |
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Zomig is another one folks here swear by...
Chris
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don
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Effectiveness of acupuncture for CH.
Zip
Zero
Nada
Iksna
Waste of money.
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colojd
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Re: Accupuncture
« Reply #5 on: Aug 12th, 2004, 10:43am » |
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Hi everyone: Just wanted to follow up with you on this subject. I posted a few days ago because my husband had made an appointment for accupuncture. Here is what occured:
The day before yesterday, he had his worst attack. He was driving home from work and said he was either going to pull over and call 911 or call me to come take him to the ER. He was at the end of his rope (as you all know how that feels) and honestly said he didn't think he could cope with these much longer.
He got a delivery of oxygen late last week and these help abort the headaches, but what occured was that the headaches kept coming but he was able to stop them in about 10 min rather than for them to come on and then he suffered for an hour until they stopped. He spent most of last weekend just sitting around with the oxygen in case a headache started. He was pretty frustrated but willing to try anything to get back to norma.
A couple of days ago when he got his worst attack, he spoke to his regular MD. My husband had been taking the low dose morphine which helped but he often would take it as he felt an attack coming on, so still had to deal with the pain until it kicked in. The doctor this last time felt he was getting a combination of tension headaches and clusters, so you can imagine the pain. He was prescribed prednezone (sp).
He went to the accupunturist yesterday. This couple is from China and were MD's there. To make this long story short, he had his first full night's sleep last night, without being awakened by pain. My husband grew up in a plumbing family business and has worked with his back, neck and knees all his life. He works behind a desk these days, but has had past injuries to all of these spots. The accupunturists told him that they have found that clusters seemed to be caused by degenerative disc problems. He had circulation problems in one leg and said he felt circulation in that leg for the first time after the treatment. He had no twinge of an oncoming headache for the entire evening and was able to sleep soundly.
He did get up a couple of hours into the sleep to take the prednezone not because he was in pain but because he wanted to follow doctor's instructions on taking it. However he had been soundly asleep with no pain and was not in need to take it because of the pain.
Sorry for the long, long post here but wanted to pass this along for what it was worth. We are hoping that this will help end these headaches and if any of the information helps, others, I am glad to pass it along.
Thanks
Joyce
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don
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Thanks Joyce but
Quote:| The accupunturists told him that they have found that clusters seemed to be caused by degenerative disc problems. |
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The top CH research scientisits in the world will tell them that they are wrong. Completely wrong.
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colojd
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Re: Accupuncture
« Reply #7 on: Aug 12th, 2004, 12:43pm » |
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Don:
I perhaps overquoted them on this - they told them that they saw numerous people who had clear MRI's and CAT's but one common thing was that they had some type of nerve damage in other areas of the body. I guess the theory is that one area can be problematic and it actually manifests itself as pain in another area.
As I said, I am not an expert on this - merely a spouse of a beloved husband who has suffered a great deal with these. I am not into quack medicine - whether it is from conventional or alternative sources. I'm not an accupuncturist. I just wanted to share this information because it seems that this board does do a lot of sharing and somewhere along the lines, what is passed along may help another.
As it stands, he was blissfully painfree last night - did the accupuncture do the trick? It's not know at this point. Just like with conventional medicine, when multiple things are tried, it may be one solitary thing that did the trick. It is concidental that last year when he first began to experience the numbness in his leg, that the headaches also started approximately the same time.
I have passed along other info on this site to him - such as the water therapy idea. That may also seem far fetched to others and may not work for some, but it is on this board as a proven remedy for at least one person. My husband began drinking more water, too. We also read that one doctor who treats clusters found that some of his patients had excess of and deficiences of certain vitamins and minerals and responded well to taking these supplements. So he takes Vit C in the AM and a multi now in the PM. We are trying....
I appreciate your comments and know that there may be some people who have tried accupunture and did not have any immediate or long term solutions but just wanted to contribute.
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Re: Accupuncture
« Reply #8 on: Aug 12th, 2004, 2:11pm » |
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"accupunturists" / chiro's just want your $$. It's not going to help clusters.
If the 02 works within 10 minutes ... you have found a GOOD thing. Stay with it ! Now, just lood for a preventative that may work.
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colojd
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Re: Accupuncture
« Reply #9 on: Aug 12th, 2004, 10:35pm » |
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When he had his good night's sleep last night, he didn't have to use the oxygen and hadn't used it all day. He is going to keep it on hand for a while, just in case.
I am new to this forum but it appears that due to other people in the past coming on and trying to sell some sort of product, book or method, that there has been pretty strong negative comments and reactions. Not having been here before, I had no idea that the accupuncture information I posted would have so many negative comments. I fully understand that it is debilitating enough to have to deal with the headaches without feeling that some doctor or other practioner is taking advantage of your helpless situation.
I posted to this topic because it said basically "post here what your experiences were" with treatments, etc. Maybe the topic heading should be changed so that people understand what you want posted here - I certainly would never encourage anyone to try anything that hadn't worked or was unsafe but I sure got the impression that my comments were not welcome.
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Re: Accupuncture
« Reply #10 on: Aug 12th, 2004, 11:50pm » |
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on Aug 12th, 2004, 10:35pm, colojd wrote:| I certainly would never encourage anyone to try anything that hadn't worked |
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That's all we are trying to tell you. Accupuncture has not worked for clusterheads in the past.
The Prednisone may be what is helping. It does help alot of us, including me. What dose is he on ?
PF Wishes,
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Superpain
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Re: Accupuncture
« Reply #11 on: Aug 13th, 2004, 6:42am » |
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I'd agree... It's most likely the pred. That stuff kicks some headache ass for alot of us. The side effect suck pretty bad, but it knocked 90% of my headaches out within 24 hrs of starting it.
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Chris
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shani01
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Re: Accupuncture
« Reply #12 on: Aug 13th, 2004, 12:50pm » |
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Hi Joyce...
I understand where u are coming from. I am a sufferer myself and my husband always feels completely helpless, he has for 5 years now - I've been a sufferer for 12 but we've been married for 5.
I am interested in trying accupuncture. You never know. CH's or the beast as we refer to it, is very particular to what it allows to work on certain people and what it doesn't. You might find that accupuncture works great for a few times or more, and then doesn't work anymore.
Another option that I have found to work wonders for me, not for the really bad CH's, is Zomig nasal spray. It has worked great for me this time around. Relpax used to work for me so you might try that too.
You are welcome to email me anytime. I hope things get better. It is important to have your husband keep the O2 w/him at all times. It is the best defense against the beast.
Shani 
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Re: Accupuncture
« Reply #13 on: Aug 13th, 2004, 1:33pm » |
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on Aug 13th, 2004, 12:50pm, shani01 wrote:| I am interested in trying accupuncture. You never know. CH's or the beast as we refer to it, is very particular to what it allows to work on certain people and what it doesn't. You might find that accupuncture works great for a few times or more, and then doesn't work anymore. |
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You'd be the first if it worked. I've never heard of another (true) clusterhead getting relief from accupuncture.
Sorry, if thats not what you wanted to hear. 
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Gator
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Re: Accupuncture
« Reply #14 on: Aug 13th, 2004, 1:53pm » |
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Hi Joyce! Welcome to the website. I am sorry to hear about your husband's suffering.
I am glad to see the oxygen is working. It's relatively cheap with few side effects. Prednisone is a great med for stopping the pain temporarily while a preventative like verapamil, topamax or lithium takes effect, but should never be taken for long periods of time. We have a member here who is facing extreme physical degeneration and possibly worse due to the indiscriminate use of prednisone by his doc. Imitrex injection and Zomig Nasal Spray are probably the two quickest working and most effective abortives. Pills don't usually work fast enough to be effective abortives.
The best way you can help your husband is to educate yourself, not just on the condition, but on the meds used to treat it. You need to know enough to question a doc if s/he prescribes something in a manner that doesn't seem right.
I understand you are only reporting what has happened in your husband's case. You'll have to forgive our skepticism. There have been many here on this site that have tried acupuncture. For most it did nothing. For some it worked the first few couple times, then quit working. There has never been anything documented where it worked on a long term basis. Read the info to the left and on the OUCH website. It will take a while, but it is worth it. Print it out and take it to your doc.
While you're at it print this as well. It has information on preventative, transitional and abortive medications as well as surgical treatments. It is really good info.
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
Be careful about falling for some "Miracle Cure." There is currently no cure for cluster headaches. A lot of people have claimed to be cured by this or that only to have it turn out to be coincidental to a cycle ending. There are many out there who will take advantage of your desire to be pain free, either for profit or for fun. Yes, I said for fun. There are some who take a perverse pleasure in suggesting "treatments and cures" and then sit back and laugh as you post that it didn't work.
Again, I welcome you to the website. I hope things get better for you and your husband. Please don't forget to take care of yourself. Supporters need support sometimes, too. We are here for you as well.
Gator
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colojd
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Re: Accupuncture
« Reply #15 on: Aug 13th, 2004, 2:13pm » |
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Thanks Gator and Sherri for your replies. As you can see, the accupuncture gets pretty strong negative reactions on this forum. However I do think that there is a lot more to alternative medicine than we know about. For example, I heard an expert from Harvard say not long ago that in the near future, the use of things like radiation to cure cancer will be a thing of the past, and that we will know more about immunology and use it to help the body learn to combat disease. I think methods like accupuncture and accupressure certainly have been used for centuries with success for all types of ailments and that instead of saying it is all hogwash that it should be at least studied and considered.
My husband was headache free again last night. Last summer, it took him from July until at least mid-September until the clusters went away. The coincidentally went away with the first frost and returned again about the same time this past July. That was why some of the doctors felt it might be a severe allergic response. That may still be the case but in the meantime his primary doc is treating it as a cluster.
He did not use the pred last night and slept again without any interruption or pain. Yesterday his neck was feeling a bit achy as if one was starting so he did a quick dose of oxygen but other than that, no problems for rest of the evening and another night of rest.
I understand when people say "there is no cure" - but I think what it really means is that right now they have not pinpointed the cause and like other things, clusters could be the pain response for a number of different things and it varies from person to person. Just like when a woman gets hormone replacement therapy, what worked for another woman is totally wrong for the next. Conventional doctors don't always have the patience to work that closely to fine tune the needs of their patients.
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Re: Accupuncture
« Reply #16 on: Aug 13th, 2004, 3:07pm » |
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Just wanted to ask ... The dosage of Prednisone he is taking ?
Did you know that Prednisone should be tapered off of ? (unless you've only done a small amount for only a couple of days)
Abruptly stopping Prednisone can cause serious problems.
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Superpain
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Re: Accupuncture
« Reply #17 on: Aug 13th, 2004, 4:59pm » |
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Yep... If he is on prednisone, he needs to take it exactly as directed. DO NOT skip pills DO NOT abruptly stop taking it!
I still have a feeling it's the prednisone halting the headaches... If he's stopped taking it he can probably plan on a visit from a very angry beast in the near future.
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Chris
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shani01
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Re: Accupuncture
« Reply #18 on: Aug 14th, 2004, 12:33am » |
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I just have to give my two cents about the Prednisone...I too was told that it was a miracle worker and it did absolutely nothing for me.
I can't stand the fact that I need to count on so many drugs to just get through hours without pain. I understand your desire to seek other options. You go for it but please understand that true clusters do not usually respond to accupuncture. It's a horrible shame but a true one.
Enjoy the pain free nights and days but be ready if the beast does return. If you believe in accupuncture, then keep going. Do whatever you believe is best right now. That's all any of us can really do. We all have our own rituals and such.
Good luck to the two of you.
Shani
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Kevin_M
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Re: Accupuncture
« Reply #19 on: Aug 14th, 2004, 8:46am » |
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on Aug 13th, 2004, 2:13pm, colojd wrote:| He did not use the pred last night and slept again without any interruption or pain. Yesterday his neck was feeling a bit achy as if one was starting so he did a quick dose of oxygen |
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If the pred was stopped, consult the prescribing doctor and tell them of the chiropractic help. If the pain comes back and you return to the chiropractor instead of a doctor, you may get different results next time. Your husband had many bone ailments as a plumber which the chiro may have helped with, and relieved some pain temporarily, but chiros will not be successful with clusters. Limited very temporary pain relief has been reported by a very few, but I would not deviate from the doctor's help in favor of the chiropractor, unless you keep believing that will help, at some point it will become clear the pred has been the factor.
Quote:| I understand when people say "there is no cure" - but I think what it really means is that right now they have not pinpointed the cause and like other things, clusters could be the pain response for a number of different things and it varies from person to person. |
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There is much evidence it is brain oriented and essentially has to due with the hypothalamus in the brain, hence the reason for the cycles and timing. So your statement is not correct. Many people have ideas of what they "think" about causes and cures, but best evidence of research by professionals have proven this type of pain cannot be a response from a number of different things, especially from outside the head and brain. It is transmitted from the brain outward, not vise versa.
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adacie
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Re: Accupuncture
« Reply #20 on: Aug 14th, 2004, 8:39pm » |
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I am new to these boards too. My clusters started in May this year. My doc gave me prednisone. It worked immediately, within 24 hours. After about a week and a half, I stopped taking them because I thought the CH were gone for good. BIG mistake. Not only did the CH come right back, but I also got really sick from the abrupt stop. I was completely dizzy and I felt like I had been hit by a truck. Just awful.
I also tried Maxalt to abort for a while and felt the chest tightening and difficulty breathing. Don't want to try Imitrex- afraid of the same side affects.
So, I don't feel like taking the meds anymore. I have pretty much just been suffering through them as they come. I use EXTREMELY cold showers, HOT showers, cold air- car air conditioner, ice packs, etc. to cope.
I have tried the whole chiro/ accupuncture thing. It made everything much worse, at first. Then, after about the 3rd visit, things started getting a little better. The CH's were a little less intense and occured a little less often. I usually get about 3-4 a day, but they went down to just once, mostly at night.
I still have my clusters, going on almost 4 months now. I don't believe the chiro/ accup. thing is really working. But, it does help to relax and de-stress a little.
Hope it works better for your husband.
Stacey
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Virginia
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Re: Accupuncture
« Reply #21 on: Aug 14th, 2004, 10:21pm » |
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Joyce,
I would have to agree with the others (based on my extensive experience with BOTH accupuncture AND prednisone) that it was the prednisone helping him and not the accupuncture. Please tell me that he did not abrubtly stop taking it. BIG MISTAKE. Please consult the Dr.
By the way, I have nothing against alternative forms of medicine. I believe that accupuncture can help people with some ailments, just not cluster headaches. This is my personal belief. I've tried it myself 4 different times with 4 different Dr's over the past 19 years with these damn headaches. And I didn't just try once or twice and give up. At one point I went to a Chinese accupuncturist at Stanford once a week for 18 weeks. This was back in the days when I was still disilliusioned enough to belief that there was a cure out there for me!! What a fool I was! Didn't make 1 bit of difference, except he got a whole lot of money from my insurance company. I am still a chronic clusterhead. If it helps your husband, more power to him but we're skeptics here because no one here as had positive results from it.
Good luck.
Virginia
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vietvet2tours
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Re: Accupuncture
« Reply #22 on: Aug 17th, 2004, 3:56pm » |
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acupuncture worked for me.Eight years with no clusters.first one in eight years was at ten fifteen this morning my next is due at two fifteen this afternoon.i am goin for more puncture.
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Superpain
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Re: Accupuncture
« Reply #23 on: Aug 17th, 2004, 3:57pm » |
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Good luck. Let us know how it goes...
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Chris
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don
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Quote:| Eight years with no clusters |
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Mind describing the symptoms of your cluster attacks?
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