I haven't noticed any difference between generic and Imitrex labeled injections.

There are some things that could be critically useful for your husband's treatment that you'll find out about here, stuff that no doctor will likely inform you of.

For instance:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
and
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Issues with doctors are extremely commonplace for CH people - doctors have generally dropped the ball big time regarding this condition.

The info and advice to be found here has saved me and many others, so please research here and keep asking the questions, while attempting to find a decent headache specialist neurologist.

.....that's just for being a supporter! You people rock. My lovely bride has stuck with me through 30 years of these dang things, even found this board for me!

Does your husband have oxygen yet? I have all but eliminated imitrex useage, oxygen works just as fast with no side effects. Do read the oxygen info tab on the left, it has to be used correctly or it's worthless.

Does he have an effective preventative medication? One he takes daily to reduce the number of hits? I use lithium. Topomax and verapamil are also popular prevents.

We're nosey around here,  when you get a chance give us a rundown of what he's using. Maybe we can help him not hurt so much. Thanks again for being a supporter!

Joe

Edited to add....YES  Bump that regulator up...he can't hurt himself with a higher flow...8 LPM is worthless....does he have a non re breather mask???

Oh I am so sorry. Verapamil and lithium is usually a fairly potent 1-2 punch when other stuff has failed. For me, prednisone provides a 100% block against attacks, but the problem is it has a lot of potential side effects if used for a long period of time.I've never used topomax....(often referred to as dopey-max for it's potential to make you forgetful!!!) but many on the board swear by it.

Finding the med or combo of meds that works is a frustrating endeavor, but well worth the effort. The basics behind 02 working, your lungs must get 100% 02, no outside air, no exhaled air. This is best accomplished using a non re breather mask, and a high flow regulator, at least 15 LPM. And you must start it at the first sign of an attack. A delay of 3-5 minutes can double my abort time. Does the regulator go up to 15 LPM?

Joe

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.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

Absolutely, no side effects to worry about.

Joe

Do you guys regulate the oxygen levels by doctors orders or as you find appropriate for yourselves?  I talked with the local clinic here and they were not happy about my husband using 15LPM.  They said that was all the higher he should go.  So if we find it necessary are we on our own to find the equipment and O2?

And yes.........you go online to Craigslist etc., and buy a higher flow regulator. We are trying so hard to educate the medical community, but we still run into this resistance. They'll give you highly addictive opiate pain killers like they're passing out candy, then say they're afraid of high flow oxygen.  Sigh....rant done..

Joe

The only "different equipment" you'd need would be the regulator.  I have two.  One for e-tanks that goes up to 25lpm and one on my m-tank that goes up to 15lpm.  There are some attacks that I just can't kill at 15lpm.  Small attacks and shadows are regularly shot down with 15lpm.

So my perscription reads 12lpm.  This is all my Neuro would prescribe because it's what the guidelines call for, for now...  But when I told my Neuro that I'd all but stopped taking Imitrex injections because 25lpm O2 was killing 99% of my attacks, he was very supportive.  He didn't change my prescription, but he was very supportive.

My Oxygen supplier has provided 2, 15lpm regulators.  They don't know about the 25lpm regulator and I'm not going to tell them about it either.

Sometimes in life you just have to do what you have to do and let the system catch up with you when it does.

-Dennis-

No one knows for sure! The most common theory is the vaso constricting effect on your blood vessels halts the pain mechanism. I lean towards that because people using nasal canulas, or re breather masks, don't get relief. But people using the non re breather or demand masks, at high flow, get relief. It seems the 100% oxygen is what makes the difference. (I qualify that with the disclaimer I have absolutley no medical training!)

As far as the return headaches, that is a problem for some, myself included. 10 minutes after turning off the 02, I'd get a re attack. For many years I was combining oral cafergot with the oxygen. I'd pop 1-2 cafergots as i strated the 02. 02 would beat it down in less then 10 minutes, the cafergot would buy me up to 12 hours pain free time.

At the suggestion of several people on the board, I'm now downing an energy drink as I start my 02. I'm almost 2 monthe into this cycle and so far it's working as well as the cafergot did.

Joe

Racer1_NC wrote on Feb 12^th, 2010 at 5:44pm:



According to my wife the nurse, the reasoning is usually that they want to make sure that there is no evidence of lung disease i.e. COPD as the high flow rates can exacerbate those types of lung issues and actually cause further lung damage.

DD

Thanks Joe!