Hi All,

I guess my story is much the same as many others. In all I've been pretty lucky. I was blessed with my first cluster headache about 12 years ago.  I went to my family gp and described the most horrible headache I've ever had. but not have had many headaches in my 46 years that couldn't be blamed on a good night out, I had nothing to compare to. I went to him 3 days in a row and on the 4rd day I told him that either he give me something that would or could render me totally unconscious or put me in the hospital where they could place me in a coma the next time I had one. That is the first time i ever heard the term "cluster headache"  I went through the gamut of pain killers and after suffering for about 5-6 weeks,  I demanded that my gp refer me to someone who knew more than he did or he would be responsible for my wife's unbearable loss. He gave me a vial of, If I remember correctly, lidocaine and a 20ml syringe and told me the next time the CH became so severe that I could not stand it to lay on my bed with my head tilted off and sqrt 20ml of lidocaine? into each nostril and hold it there as long as possible before turning over to let it drain out. He said it should basically freeze the ganglia of nerves at the back of the sinus cavity and possibly alleviate the headache temporarily until he could find a specialist that he could refer me to. By the grace of God that was the last CH I've had until 3 weeks ago.

They have returned with a vengeance! I had an ear infection back in December.  I was treated for that and he also examined me for a deviated septum of which I already knew I had from the 40+ years of increasingly worse mouth breathing and sleep appear. I think during the scoping of my sinuses with the lighted snake thinghy, he touched   something that triggered these CH's to reemerge.
I refused nasal surgery  to be able to breathe better for fear that this would do just what has happened. I am now on a combination of butalbital-caff-apap-cod-cawsw 1 every 4 hours, topiramate 2-100 mg p/day, oxycodone apap 10-325g tawat as needed . I was given samples of TREXIMET which is imitrex mixed with naproxen sodium. It works but is not covered by my insurance. Also you can only use 9 pills a month max or 2 per 24 hrs max. I then went to my new gp and ask for O2, I got an E cylinder non rebreathing mask and cart for $65.00. Not covered by my insurance. To my surprise 5 mins into my next attack it disappeared. Bam! it was gone.... It took about ten mins the next time at 8 ltrs ( the most my unit could give) and two more treatments and the tank was empty. $15.00 and two later got another tank and it was gone the same day. I started reading up on O2.

All O2 is the same. It all comes from the same place, from the same distributor, the same tank. Medical O2 is documented and controlled by the number on the bottle. They is supposed to be a vacuum drawn on the tank then filled to prevent contamination usually by water..There is a slim possibility that industrial O2 could be cross contaminated with another gas such as acetylene. The chance is about 1/1000000. A unlikely series of actions must happen in order with odds that would rival winning the lottery but in is possible. Can you detect it, You can't miss it. You can taste, smell almost see it. I bought a new Victor medical regulator with a 15ml ball valve on Ebay for $42.00 shipped , My 80 cu ft cutting torch tank was empty so I exchanged it for a full one at the local welding supply for $30.00. Now I have something that will last for a few weeks. It Works great and as good actually better than the med unit.

I now have an appointment with a neurologist to get his opinion but I hope in a week or two these will disappear as the others did 12 yrs ago for 30 yrs this time.... May God bless you all....

Gator1950

Ignore Chuck, the man is scary!

Great introduction! I got the lidocaine too in the early 80's. Gave me a bodacious tummy ache but never helped the CH. The butalbital actually helped a little, but the side effects make it risky at best.

Oxygen! That's what I'm talking about. If it worked at all at the lower levels, you'll be amazed at how fast the higher flow kills it!!

Welcome to the board.

Joe

While it's good that you are seeing a neurologist, do hope he has experience/training in headache. Our collective experience and medical studies show how many of them lack skill and training. If you have time to check him out, suggest calling his office and asking. Any evasion or mush mouth is a warning sign.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.

GATO1950 wrote on Apr 11^th, 2009 at 6:52am:

stay away from immitrex injections, it cuts the pain immediately but the pain comes back 3-4 times worse in 4-5 hours. i dont recommend those injections to anybody. plus they are so expensive

Gato,I dont agree either about the imitrex making the beast come back any stronger the next time.
I like to save the imitrex for the times when I havent had sleep for about a week, then take it.  Or save it for those few times I get slammed during the daytime, when dealing with kids, noise, light etc.

I dont think trex makes my headaches come back any worse than if I hadnt taken it.  I rely on O2, but it doesnt last any longer than about an hour, however, an injection will give me 4-5 hours of blissful sleep.

I also have had my nose packed with lidocaine,  but that was when I was going to a neurologist who had no idea about headache treatment, but his ego wouldnt allow him to say that I needed more help than he was capable of giving.  Do yourself a huge favor and try to find a headache specialist.  A good doctor would know the best and newest treatments to offer to you.

Good luck
Chris

sylverstar wrote on Apr 16^th, 2009 at 6:33pm:

I get so angry when I read about insurance companies denying people what they need.

I live in The Netherlands, and know I'm very fortunate my insurance company has covered dozens of Imitrex refills in only a few weeks. Now my neuro prescribed O2, and that hasn't been a problem as well.

I'm amazed that it is so much harder for Americans to get that prescription filled. I hope that changes soon.

Lottie