Well crazy things are going on in Mr Muffins world...let me explain.My most recent trip to the ER ended up with me being diagnosed with Trigeminal Neuralgia to go along with my CH!!!As if it wasn't enough to have the #1 most painful condition now I've got the 2nd most painful at the same time.Im still trying to find out all the details about TM but I know its bad and I got this three weeks into my cluster cycle.Having CH is almost to much to take but having both of these is going to require a lot of hoping and praying.I would like to know if anyone else has had both or if they might be connected somehow and how you deal with the level of pain with both.I know I'm asking a lot but I'm very desperate at this point.It will be a little while before I will get to see my doc so all help,advice and prayers will be greatly appreciated.Also I'm taking sumatriptan for the ch,prednisone and hydrocodon for the TM.I'm still in the process of trying to get O2.Thank you for your help and support.

               Adam.

Print out the link below about O2 and take it to your Doctors. Unfortunately, CH is so rare that most Dr's know little and only you can help get what you need, by learning what the best treatments are from this website.

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

Too many Dr's have outdated info about CH. We can suffer or become pro-active in our best interest.

Don

Mr Muffin wrote on Jan 5^th, 2013 at 2:02am:


There is also an option, used by many, of using welding oxygen. This is just as pure as medical oxygen as otherwise welds would fail. Others who use it will be able to give you targetted advice on how to get it.

What Lance said! I'm fortunate enough to "only" have CH! (Never thought I'd say that, life is so relative!!) Oxygen has completely changed my outlook on CH.

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Joe

Well I finally have a update for everyone.I went to Dynamic health and pain management center in charlotte and after a consultation they took some x-rays of my neck and it showed that my spine is growing into my brain/stem.There pretty sure thats what is causing the TN but they don't know about the ch.I will be sure to keep everyone posted on here.My treatment so far is shots in my neck/spine and decompressing it trying to relieve the pressure on my brain.Praying this fixes all my problems.

The unresolved issue is that when you go to a specialist they will look for problems within the range of their training. ER is poor source of treatment for headache because they are not focusing on the deep diagnostic work which headache problems need. Pain management, ditto. It's simply a by-product of the extensive specialization which defines modern medicine.

If you are in the Charlotte market, seek out a headache specialist. Understand that Cluster (and related disorders) are referred to as "orphan" disorders reflecting the very small % of the pouplation with such problems. In tern, even neurologists, who we would expect to be the experts in headache, receive remarkably little education in headache disorders and so we hear so many complaints about care received from this group.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

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

5. 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.