its been five years since i have had my first cycle and not many changes have occured until recently.i want to state first that since my first CH i have had no more than a 4 week remission and thats a good amount of time so i am used to being a chronic sufferer. the first change was the switch from my right to my left eye,just happened a month or two ago. along with that change came a jump in the intensity of the pain that honestly made me re-rate my pain scale,what i used to see as a kip 9,is now a 6 or 7. also ive never been woken from a dead sleep and jumped out of bed to realize it was the beast coming at me until these past 2 months. now, what is even more confusing is that instead of a few hours in between hits like i normally get,im now somtimes getting maybe 30-45 minutes and boom,out comes another.ive also developed a nice sized ganglion cyst on my neck that i noticed about a month ago. its all i can do to sit here and type but im just getting over my 4th hit in the past 7 hours and the shadows are lurking. i understand that changes will occur,but this is really fast and its starting to scare the hell out of me especially since right now im taking 12mg of decadron a day (been on it for a week and a half,about to taper). is this normal? i know that im young being only 26 and understand that changes are going to occur but this is seriously starting to get out of control. the treatment i am on admittedly(even by my doc) isnt the best one,but the only one i can afford at the moment. 55mgs of methadone daily(i know) along with 10mg oxycodone(almost useless) and 3 tabs of fioricet 50/325 on top of 800mgs of tegretol. i want to stop the oxy,it only causes rebounds and is useless other than for a thirty minute confidence booster. the meds are very cheap and i have no insurance and am waiting on medicaid. i have had no significant changes in meds,lifestyle,or diet that i can see that would cause this. im going to see my doc on monday to see about oxygen and its cost. ive tried so many meds and to tell you the truth NOTHING has worked as well as methadone and the only reason i can think of for that is the fact that it is that it has the longest half life of any opiate but i still plan to get off of it again as soon as i find a suitable treatment(i hope that i can get better results with oxygen than i have previously). im headed to the doc next week to up my methadone until i can sort things out. i want to state again that my doc has done more for me than most of my family members. i owe him thousands and he doesnt bother to ask for a payment,i just pay what i can. he admits that hes only treated 4 people with CH and has very limited knowledge. ive been to a neurologist after saving money and the guy spent 5 mins with me and wanted me to start another med i had tried previously for 3 months ,yet insisted i try again. im not a doctor, but that was my last trip to the neuro and i now realize i need to find one who specializes in CH. i can find one thanks to this site,affording it is another issue.its late and as im writing this post the shadows are calming but i know that if i go to sleep im going to wake up in a nightmare. have any of you had changes like this occur so rapidly?im interested in hearing your experiences on how your CH's have evolved so i can at least get an idea on where mine may be headed. thanks, and sorry for the long post

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Your story is all too common: working with a doc who has no skills in treating Cluster and yet you sticking with him because he is a known and the limits of $.

Two things jump out: all your treatment is centered around pain meds--the least effective treatment for Cluster; and the doctor issue.

Opening paragraph: read and do, please! Treatment available to you is a factor of your location. But, if at all possible, try and locate a headache specialist.
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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.
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Print out the PDF file, below, for two reasons. 1. it spells out the kinds of treatments which are standards for Cluster, the sort of stuff you should be using. IF your present doc is open to receiving such material, give him a copy. (Many of us have had to educate our doc in how to treat us. We can supply the medical materials but none of us can control whether your doc is open to receiving it. You'll have to make the call and decide whether continuing to work with your doc is worth your $ investment.)

You're asking for help in treating your pain. But it's, at this stage, more important that you have a doc who is able diagnose with skill & experience. There are a number of disorders which mimic Cluster and it's important that a sound understanding guides your treatment.

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I can't imagine what this rodeo would be like without insurance. It's a dilemma we hear so often in posts like yours. Still, Bob is right. It's important to get to a doc who can treat CHs, if that remains your diagnosis. Nothing you are taking currently (with the exception of Tegretol which I found useless) is going to halt the beast. In my experience, not attacking CHs head-on with effective meds only encourages the bugger, and the attack frequency and intensity ramps up much as you describe. O2 and Verapamil are quite cheap, or can be. Even without insurance. I would get that appointment and push for both. High doses of verapamil, under a doctor's care, can be very effective in reducing the frequency and duration of a hit. I know. Good luck and God bless. lance

It's been mentioned before but please visit:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It's helped many when nothing else seemed to work.

Joe

jake, ive been chronic for 14 years and never got hit after i layed down at night till 2 years ago, now im getting hit every night. Just when you think you've figured it out, something changes. All those meds you are taking will help with a broken arm, but not ch! lol get to a qualified neurologist, take ya 10,000 i u of vitamin d3 and pop 10 mg. of melatonin before bed and get on some good ol ch'er meds and much needed rest!

I'm no expert, but here is what I use when a cycle starts:

1. Prednisone- for most it won't completely halt the cycle, but it can buy time until other preventatives start to work and is pretty cheap, though can have side effects

2. Immigran- more expensive but I have never had it fail to knock an attack down in 10 minutes or less

3. Vitamin D3- 5000 IU a day for me seems to work, some do twice that amount

4. LOTS of water

I stay far away from caffeine as that tends to give me nasty rebound headaches when I'm in the middle of a cycle. Do what the others have suggested and get to a doctor who has experience with clusters. O2 may also be something worth looking into for you. Good luck and hang in there.

Guiseppi wrote on Feb 16^th, 2012 at 8:58am:

It's been mentioned before but please visit: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE It's helped many when nothing else seemed to work.

It's worth checking it out. It really is.