HI ALL,
Finding this sight has been a blessing; A little about me my name is Ken, I am 53 live in Massachusetts USA and have been suffering from chronic headaches for the last 21 years.  My headaches started after a severe head / neck trauma.    .  Early on I would have a combination of headaches with migraine symptoms With bouts of Cluster headaches I have more days and night with headaches than without.   I also had severe neck pain in the C 1 area.  As of the last 7 years most of my headaches have classic cluster headache symptoms. I have not had good luck with the many Doctors I have seen.   This could be because I am not a clean cut case because of the head / neck trauma and the migraine symptoms thrown into the mix.  I have had good luck with prednisone breaking up a bad cycle although it is hard to get from the doctor as often as needed. I did well on verapermil with the headaches but it caused my legs to swell badly with fluid and I had to stop using it. I am currently on depacote but it is basically useless as far as I can tell. And use Maxalt ( like imatrex) when I can I have to use sparingly  more headachesa month than Maxalt   My current support is not very good this burden has been very taxing on my 30 year marriage I have put her through hell and back. I was very touched by all the posts and found it very comforting to know I was not alone.  That there are other that have been on the verge of total disappear and have learned to except and manage the beast and returned to a more normal life   Thank you maybe there is hope for me  MY current cycle is two headaches a day ranging from a level 5 to (10  Bang my head on the wall and want to kill myself to just stop the pain) The first starts early evening the second I wake from at around 3 am end around 5 in time for me to go to work this cycle has been going on every day for the last 4 week. The only sleep I get is weekends after 5 am and days I miss work   I am so tired  but can not go sleep cause I have my evening beast and know when I do go to sleep I will wake with my early morning beast
I am currently looking for a good Cluster headache doctor in the Massachusetts area not sure I have confidence in the one I have.  Anyone have any suggestions?
I have been reading about the 100% O2  and am very interested  ( My current Doc Not So )  I have welding oxygen readily available to me is there any serious down side to using this short term to see it works for me while I look for a new Doctor .
I found the link to the Medifocus Guidebook on Cluster Headache  on you web site is it worth the $30.00 it seems as most of the info is available on CH.com ( I have learned a lot in the last 24 hours on CH.com)

Thank You Ken

Hi there, Ken, and welcome from another MA resident clusterhead! In your post you wrote:


Quote:

I am currently looking for a good Cluster headache doctor in the Massachusetts area not sure I have confidence in the one I have.  Anyone have any suggestions? I have been reading about the 100% O2  and am very interested  ( My current Doc Not So )  I have welding oxygen readily available to me is there any serious down side to using this short term to see it works for me while I look for a new Doctor .

You do need a good headache specialist. Fortunately, we have several in the Boston area. Tufts, through Brigham and Women's, has a clinic with neuros who specialize in headaches. I see Dr Paul Rizzoli. There are others as well. His bedside manner is terrible, but I cried with relief when I didn't have to explain to him anything about what I was going through. He understood. They are aggressive and want to eliminate the pain.

O2 is da bomb, and welder's O2 will work just fine so long as it is 100% oxygen. You need a special regulator for it, details available if you search "welder's Oxygen" on this site. You also need a nonrebreather mask, no matter what tank or regulator you have. That's a mask without holes, and if it has vents, they are one way only-on the exhale. Check out the Optimask on this site.

If you have any questions just give me a shout, or a PM. I'll be happy to help in any way I can. God bless. lance

Welcome Ken,
I agree with Lance, read carefully the Oxygen Info link on the left, order the optimask, and get to it as quickly as possible. May change your life overnight. Welders O2 is safe (green tank, cutting torch pure O2).

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Thanks  all for the good advice and support  I am searching for a new Doctor  many of the top names want referrals and are not booking appointments until Nov/Dec  On a good note armed with all the O2 info I got from CH.com I convinced my current Doc to get me a O2 setup which just got delivered.  I am very optimistic and looking forward to a little relief  just  1/2 nights slept would be a blessing.

Thanks everyone I think you have made a big change in my life

If haven't read our "oxygen info" page, pls do. Knowing you have correct equipment is something we need to know.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Don

Ken, you might also want to stock up on some energy drinks with that 02--folks often use Red Bull, but the important ingredients are caffeine and taurine (I use "Ripped Fuel" because it's $1 per can at the Dollar Tree). Chug a can of the stuff right before you hit the 02 and you may achieve even quicker aborts. Good luck and remember, we're all counting on you!  ;)

Ken, what Applenutclusters advises concerning energy drinks is real and very helpful. Don't know why and we have various guesses, but for many of us, chugging one down and then hitting the O2 at the earliest sign of a headache reduces abort time a lot. And for me, reduces the chances of a return headache. blessings. lance