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

WOW!!!  GREAT introduction!

I have a problem with a few of your treatments.  OXYCOTIN ... PLEASE stay away from that kerap!  It does little for clusters ... All it does is take the edge off ... And addiction is so easy to fall into!

Treximet is almost worthless for us.  Ask to get the prescription (and samples) for Imitrex injectables.  It works MUCH faster, and efficiently, for most people.

I am SO glad you have oxygen!  It is a life saver for most of us here.  It is the first choice for fighting the beast, when he comes to call.  It is safe, cheap, effective, and virtually no side effects!

Welcome to the nut house family!

Chuck

Ignore Chuck, the man is scary! ;D

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

Great Intro and welcome Gator. Most everyone of our insurance companies pay for our 02. I would be on the phone talking to someone or ask the Neuro if he would call. There is no sense in that not being covered.

Chuck has given good advise. Read all you can on the left and be armed with info when you go in to see him/her.

Good luck and keep us posted.

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.
-----------

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.  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.

Thanks for the advice and support guys. I am very cautious about the use of narcotics and I hate taking any type of pill  anyway. Also, thank you for over looking my many typo's. Laptops on laps in recliners at night
in the dark is not condusive to correctness. ;)

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

Also, thank you for over looking my many typo's.

Most of us have aced the course of typoese ....

LOL

Chuck

Good post.

     Kinder gent ler Potter

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

newhead1978 wrote on Apr 12^th, 2009 at 1:03am:

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

Maybe for YOU that happens.  Not everyone experiences that.

You say you would not recommend that to anyone.  Well, you are the minority, here.  Most of us DO recommend imitrex, or zomig, but with warnings for possible problems, and recommendations to only use it second to oxygen.  Oxygen should be the primary abortive.

Chuck

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

My insurance not only refuses to cover the oxygen (Aetna! - they only cover for breathing problems), when I called to ask about it they asked me if I had ever heard of aspirin!!  What can you say?  Why do we not have a program going on to force this issue with the insurance companies?  Is there any way to get this together, get the neuro's involved?

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

My insurance not only refuses to cover the oxygen (Aetna! - they only cover for breathing problems), when I called to ask about it they asked me if I had ever heard of aspirin!!  What can you say?  Why do we not have a program going on to force this issue with the insurance companies?  Is there any way to get this together, get the neuro's involved?

GRRRRRRR !!!!

I HATE hearing that almost as much as I HATE to hear that doctors will not prescribe it!

OK, You need to get you fighting hat on, and start the FIGHT!

First of all, ask your Neuro to write a NEW prescription, and write it as follows:


Quote:

Proper Wording for Prescription Oxygen @ flow rate of 12-15 liters/minute with a non-rebreather mask, as required. "AS NEEDED FOR CLUSTER HEADACHES."

(above taken from oxygen info tab on the left edge of your screen)

Then re-submit that to your insurance company.  If they refuse, ask for the number to the review board, of their company.  Talk to THEM about it.  If you still get a "NO", then ask to speak to that person's supervisor.  And if need be, keep speaking to higher and higher up people.

Keep calling them.  Make a pest of your calls, BUT, always be polite.

Ask your medical supply company if they can submit it to the insurance company under the code for "Medical Equipment" ... That is how I got my insurance company to start paying for it.

It really sucks that you have to jump through all their stumbling block hoops.  But it CAN be done!  It is a recognized treatment for cluster headaches.

Keep us posted on how you make out, and if you need more assistance.

Chuck

What Chuckles said!!!!

I had exactly the same experience with my insurance company...here's what I did after years of frustration:

Constant calls...up the ladder...get your name on their radar and get the name of everyone you talk to. Let them go on the record defying your physicians script.

Write them appeal letters to their denial...again puts them on the record.

The script as Chuck said.

PLUS, a letter from the neuro (who I got just as pissed as me).. stating you suffer from INTRACTABLE headaches (I think it is a key word) in a firm tone indicating O2 was required and this was not debatable. I'm sure it helped that the neuro was a specialist in a pain and headache clinic. She also told me to let her know if I had further problems. Of course, the key here is finding a doctor with cred willing to fight for you...it's hard to find one, I know, but keep looking...

PLUS, if your company buys health insurance through a broker...get 'em on your side (I did, with the help of the HR person in my company). They are the insurance company's customer, you AREN'T...they listen to them way more than you. Get that broker as pissed as you, it took the same kind of constant calls and letters from me to get it...but I was mad as hell and just not going to take it anymore...and I finally got their attention and HELP...

If your company buys direct, calls from your HR dept(or better yet, the CEO, he/she has vested interest is seeing that you get proper treatment from the company they are paying to) can't hurt and sure might help...same as above.

While I still have to meet a stupid "medical equipment" $500 yearly deductible...I go through nearly an e-tank a day...so I am saving THOUSANDS.

One of the benefits of all this effort, besides the obvious BLESSED
gas...was the satisfaction of having beaten another version of the beast...

Best,

Jon

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

hi to Holland Lottie. The last time I wrote something like you wrote, one of the guys in the forum told me to "move out of America!!!" lol. Easiest solution I guess. So beware hahahaha.