good day all, my name is brian, i have been dealing with ch for about 10 years, im now 24.

i have tho o2, got the imitrex inj. best combo for aborting (for me) no doubt

been on verapamil 720 a day for 4-5 years i dont think its helping any more, i wanna stop it but im afraid

steroids were the best preventative, first predisone, then dexamethasone cuz pred was no longer effecdtive.

well let me tell you about dex. stretch marks all across my stomach under my arms, i gained 30 lbs, lost all the hair on my legs, acne on my back like you wouldnt believe, and to top it off AVN of the hips

i refuse to take any steroid for anything as it has destroyed my joints, im 24 and hip replacement is inevitable

needless to say the monster is back, and with the AVN my orthoipedic doctor gave me darvocet, i should have known better because hydrocodone triggers clusters for me and well come to find out so does darvocet, so now i have proxicam for tyhe pain from avn (its a n-said for osteo arthritis) it helps greatly i almost walk without a limp on good high pressure days

im lost in pain ive been gettin two attacks a day exactly 12 hrs apart from eachother, i look at the clock get my o2 ready a shot if the o2 doesnt work and i wait for it.

since all these drugs for ch alter blood vessels some how, and avn is cause by lack of blood to the bone, my fear for more problems from meds in tryin to treat control and abort my headaches is haunting me.

my neuro said he can no longer help me he has exausted his knowledge, he sent me to a nuero surgeon for a occiptal nuero stimulator but its not approved by fda and i been awaiting his push on the ins company but its been 5 months so i feel i been short changed, running out of options my friends

everyone says it gets better but it has only gotten worse

hopefully experiences by you can help me and hopefully i can provide help and knowledge as well

Hello and welcome

Sounds like your really going through it at the moment.
Being as I've not even been suffering this blight for a year yet I don't think i can help much . Have you had a look at the alternative methods on the cluster busters site ,link to the left, it has changed some peoples lives.

Any way wishing you all the best
Praying for you

Nigel

My first reaction is confused medical treatment! Rather than try to advise on treatment I'd suggest that you find a good headache specialist who can start a new treatment plan.
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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. 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. 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

well i found one doctor in the area using your search ideas.

no info was supplied for them and they specialise in ALS, Autism, Epilepsy, Huntington's Disease, Parkinson's Disease, nothin about headaches migraine let alone ch. the doctor i see is minsoo kang

i have been to many doctors been misdiagnosed and unfortunately this is the only doctor who has provided any help, and that help is perscribing me imitrex and o2. tried the lithium, tried the verapamil, i have had the access to the best meds and the all seem to work for a while then stop

i have had the access to the best meds and the all seem to work for a while then stop

That's what sucks about CH. What works for a while....can suddenly stop working.

My only suggestions are read the oxygen info link and make sure you're using it as efficiently as possible.

Then go to clusterbusters.com         Having an amazing number of success stories there....especially for people like you for which so many of the standard meds are failing you.

Hang in there......it can really suck but it DOES end and you're no longer alone.

Joe

headache boy - you can and are helping wether u think u can or not, just by u postin on my thread has helped, showing your concern and knowing what these headaches are like makes things easier to deal with

cluster busters.  . . check it out and registered, interesting fact on the shrooms, about 6 years ago me and the friends got a bag and well got a little crazy on em, needless to say i remeber that summer and winter being headache free, almost a year and a half,too bad i cant find them anymore perhaps ill need to cultivate thy own wont be the first time of something like this ;)

thanks for all the references bob johnson i will use your knowledge to my advantage

thank everyone for your posts

Hey Agent Orange,

Sorry to hear of this rotten bag o' CH you're being slammed with. >:(

I'm afraid the dangers of prolonged steroid use are not well enough recognized by both doctors and patients, and you're certainly not the only CH'er to have been seriously hit by the permanent side effects.

I do think you are getting some very good advice here, I'm not the slightest bit surprised that you experienced that extended relief in the past courtesy of the psylocybin, and if you haven't checked out the oxygen info link on the left of this page yet, I agree that it's a GREAT way to turbo charge your O2.

Oh yeah, hey are you stretching your imitex doses as outlined in the imitrex tip? (here's the link):
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

ive thought about splitting the imitrex doses but when i get a hit, i go to the o2 first if available, i have 6 etanks laying around and my old man asks every day even if 1 is empty he get it refilled if im worn from the headaches. thank god the 02 is working again for about a week it wouldnt touch the ch

im usually in such pain that i shake and fear hurting myself while manually giving my self the shot and tryin to get the q tip thing going. i tried modifying the pen but you cant it still injects all the solution

i have a better grasp on things the last few days the o2 is knockin them back within 5-10 mins on 8 liters as before it wasnt

thanks again for the posts i appreciate the concern and help you all provide

02 failed me once on this cycle...scared the crap outta me as it has never completely failed me before. Batch suggested the following to change my blood PH levels.

2-3 times a day, pop a magnesium pill, a zinc pill, a calcium with vitamin d pill, and wash all of it down with lemon juice.

Started doing that, the 02 worked like a charm again. Might be worth a shot should the 02 start to lose its effectiveness.

Joe