Has anyone sought out the Mayo clinic for treatment and if so did you find a treatment that helped?

I’m a chronic CH’er and I would have to ask if I may, have you seen a neurologist for a diagnosis yet?

The mayo will probably try to talk you into a DBS (deep brain stimulator) or something else to their benefit without wires!

Try to get a good head ache neurologist with CH experience if possible before you waste your time on a leap of faith at the Mayo clinic.

The good neurologist are always 2-3 months out so tell them you want to be notified of cancel outs, and you may make a quicker appointment available to you.

PF wises to you flea, Roland. ;)

Hold the mayo. I like miracle whip. Beware of surgeons with implants.
thebb

Yes Ive had 4  neurologists. The Best being Jennifer Bickell @ KU med center. She transfered to Childrens Mercy when Obama threatened her Job with the National Health care crap. I have a somewhat adequate Neuro now, but he is merely following her reccommendations. I have responded well to Ocipital Nerve Blocks, but they last less than a couple weeks at best. I immediately revert back to KIP 7-10's , at 2-3 week intervals with less than 3 month cessation periods, when I cease my med regime and the cocktail Im taking is becoming less and less reliable and I am SICK of all the pills. I am interested in the original ONSI implant, not the miniaturized ONSI ll that is having so many issues in testing.

I am Classic CH, my pain is centered at my Ocipital nerve bundle.  Ice application and pressure points are all directed there for maximum relief.

Im looking for some advice and positive feedback from others who have achieved relief from this same procedure.

I am NOT interested in "Busting" so save the effort please.  I use O2 and am VERY good at it and have been doing it since Pete Bachelor taught me how in 2002. It has lost its effectiveness also if I dont get to my tank or awaken soon enough, even at 30LPM with my own regulator.

My main abortive is Ergotamine as Triptans cause wicked rebounds.

Verapamil,Lithium, Topomax, Melatonin,Magnesium

Flea,

I feel for you. What about the vitamin cocktail Batch recommends? Have you tried that?

Tate
:)

No, I havent.  I will find out tho.  Havent spoke to him in several years or been on here either.

Thanks.

I appreciate the suggestion.

Hi Flea,

As I am not currently in a cycle, it is amazing how the mind can allow one to "forget" how truly hellish this whole thing is...while in my last cycle though, I recall telling my dr that he may as well have told me that I was dying because I felt that I had no life and that if my present state were to remain then I couldn't bear it... I was depressed, in pain, couldn't care for my young twin sons, so awful. I did finally make it out of the cycle... But, I say these things to show that I can in some way understand your pain.

I know you have seen 4 drs. I have easily seen twice that as we moved around a lot over the years... And today, I saw a new one in hopes of new hope for my next cycle. He had do many ideas that I have never tried. Maybe you should check out another dr???

Another approach might be what you need. At least it would give you hope. :)

Here if you need an ear!

Tate :) :)

Welcome back Flea, do check out the "Batch Regimen." He's been putting a boatload of work into perfecting it and it's producing some pretty impressive results. Go to medications section, and read the posting "123 pain free days and I think I know why."

Wishing you some pain free time soon.

Joe