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Title: Looking for help in Buffalo NY Post by dodie on Aug 24th, 2005, 12:28pm Hello, Im back after almost a year of being CH free. I have tried it all throughout the years and I am wanting to get seriouse now. I have been on all the medications. Pred, Verap, ergostate, imatr, fovra, topamax. etc. Now I want to try something different. I am looking for a headache specialist in the Buffalo/Canada area. I am also looking for a good acupuncturist or reflexologist or homeopathic doctor. Please respond with any suggestions here or at my e mail dodiehow@hotmail.com thank you, |
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Title: Re: Looking for help in Buffalo NY Post by nani on Aug 24th, 2005, 12:33pm Quote:
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Hi dodie, There are 2 very effective "something differents": ;) Look here: (read it all- including the links) http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 And look here as well, www.clusterbusters.com Pain free wishes, nani |
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Title: Re: Looking for help in Buffalo NY Post by dodie on Aug 24th, 2005, 1:01pm Nani, Thank you for the information. I printed out the pages and will talk to my family Dr. today at my appointment about more homeopathic options. I hope he can recomend a good homeopathic doctor for me to see in the area. Anything is worth a shot. I will let you know how it goes. |
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Title: Re: Looking for help in Buffalo NY Post by cheNY on Aug 25th, 2005, 8:04pm Hey Dodie, I tried accupunture and did not work. My friend, which is an acupuncture and specializes in Chinese medicine recommends an old friend of his that he trained with and that has been in Chinese medicine for decades, he is in lower Manhattan. Anyway, he says that there is a procedure that few are trained in. Simply put, its accupunture literally in your eye, really right next to it, by the lacrimal gland. It was explained to me in simple terms, it resets your CSF (cerebral spinal fluid) rhythm or flow, which may have something to do with our 'biological clock' or headaches. I'm serioulsly considering it just have not had the time. He says its completely safe, and worst case scenario it doesn't help the headaches, but you feel great and are out about 100 bucks. I'm going on 3 months non-stop, longest one yet. Thats 3 months of broken 5 hrs sleep at best....... I'll do anything! Good luck & hope you find something. |
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Title: Re: Looking for help in Buffalo NY Post by dodie on Aug 26th, 2005, 11:29am I saw my family practice Dr. yesterday Dr. Martin Casey (great man) who reccomended two names for me in the Buffalo area. Dent Neurologic Institute 716-250-2000 DR. Lazlo Mechtler , MD Headache specialist www.dentinstitute.com (I cant get in with him till NOV. ! ) Sedona Holistic Medical Center 716-646-6075 Dr. Ron or Cheri Santasiero , MD's Accupuncturist and herbal health http://www.sedonaholistic.com/index.php3 (I cant get i with them till DEC. !) Dr. Casey really wanted to get me on Oxygen therepy but had no idea how to get it to me if i didnt have a repiratory disease? This I do not understand all of you other cluster heads have it why cant I get it? Well in any case he was hoping the headache specialist could get it for me? Hope this helps with any of you in Western NY. I am back on a pred. taper till I can get into these other doctors. Hope it works again this time. pain free hopes for you all. Thank you for your comments. Dodie |
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Title: Re: Looking for help in Buffalo NY Post by mcf69 on Aug 26th, 2005, 5:58pm Quote:
I'd check into that one, is it because of insurance problems?, or because the Doc won't precribe it becasue you don't have a respiratory condition? A little bit of quick research shows that most insurance companies will cover oxygen for cluster headaches as it is a valid treatment........ |
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Title: Re: Looking for help in Buffalo NY Post by yikes-another-one on Aug 27th, 2005, 10:24am :) it's not so expensive that you cannot pay for it yourself. Most insurance agencies won't cover it, but you still need the prescription from the docotor. Jonny and many others have great info on Oxygen. Please look in the left side of the page under oygen info.... you can get relief...at least 80% of the time. (Better than nuthing.) TJ |
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Title: Re: Looking for help in Buffalo NY Post by lionsound on Aug 27th, 2005, 8:39pm Hi dodie, Your regular doc should be able to write that O2 script for you. Perhaps he can consult with a neuro if he is unsure how to write the script. it has to specifically state clusterheadaches dx on it sometmes with the mask and regulator specs too. I'm guessing you've already read this... http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm print it out and bring it to your doc for his reference. It may also be helpful to call your insurance and o2 companies and ask specifically what they need for a written script to get you O2. I would also suggest calling back the HA specialist frequently because you never nkow when a cancellation might come up before November. (I got in to NECH within two weeks becuase I happend to call the day of a cancellation) Let us know how you make out.:) Be well and PF! -lionsound |
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Title: Re: Looking for help in Buffalo NY Post by Charlie on Aug 28th, 2005, 5:17pm Quote:
Sorry you have to deal with this horror. I'm down in Jamestown but my headaches have been gone for 13 years. That I'm 59 may have something to do with it. Take my advice and spend your time and money on more traditional serious medicine. You need good neurologists or perhaps headache specialists. Neurolgists are my choice though. It's been decades since I've seen Buffalo doctors though. Let us know how things work out. Here is my not so serious technique but the price is right and it's not invasive: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: Looking for help in Buffalo NY Post by dodie on Sep 7th, 2005, 11:03am Hello all, Thank you for all the tips and well wishes. I think this last coarse of pred. bought me some time to do some more research on the O2 and see if I can get into the Dr.'s offices earlier. I felt alittle CH around the camp fire in the Adirondack mountains this weekend but thank god for the fresh mountain air. Some cleansing breaths with in a half hour or so it was gone. Wish I could bottle that! thank you again, dodie |
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Title: Re: Looking for help in Buffalo NY Post by dodie on Sep 22nd, 2005, 1:27pm Well since my last post the prednisone wore off and I called my primary Dr. and tried to get some relief from the rebound CH's. She wanted to do an MRI.... Here we go again! So to apease her I do the MRI this time they found something... a cyst in my right nostral ..... strange my pain is on the right side.... so now she is convinced I do not have CH and the cyst is causing the headaches. Ok....... hold on >:( the cyst is the size of my fingernail. It has not been in my nose for 15 years causing this pain! These are two seperate events! She does not believe they are and gives me a huge dose of Augmentin 875 mg twice a day to shrink the infected cyst up my nose. (of which I have had no symptoms by the way) and some more Loritabs (thanx for those I will gladly take them any day whoo hoo) fojr the pain and because they wont cause any bleeding if the cyst decides to bust. But she is not understanding of treating the problem not the symptoms. The good news is that I got into the Sadona health place faster. I took your advice and checked for cancellations. Im going Oct 3 rd, and for the $130 dollars I have to pay because they dont accept Health Ins. I am going to sit there untill they realise it is two seperate events and they will treat my cluster by cracky! Thats right I said By cracky! Maybe thats the Loritab talking. any who I will let y'all know how things go. courtnay (dodie) |
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