Welcome,

Wow..! Never thought these HA's would have a positive effect on anything but you just proved me wrong. Glad the MRI caught it in time. Can you tell us a little more about yourself i.e. about your cycle and what is your current medication regieme.

BTW... try not to blame yourself for these HA's hopefully we can help you get a better understanding of this condition and make the whole experience a little less Intimidating .




Lefty

Hi,
I have my primary care physician, my neurologist and a pain management specialist working on these headaches. I take Lithium, which isn't working, was taking topomax and I am taking Neurontin. I have just started injections into the nerves the specialists think might be causing the problem, so far no luck.
Went to bed at 3:30 a.m., when a headache ended and now I just took more pain meds because one is starting, UUGGHH. I just can't stand it any longer!!

If you have the option, your chances of getting effective treament would increase by working with a headache specialist.

Two issues: Both our experience and medical reports show that many neurologists, etc. have little or no effective training in treating headache. There are many, many dozens of headache types and many disosrders which APPEAR to be cluster but which are, in fact, not. Having someone with deep experience and training is most important. (We have medical surveys which show that it takes many people from 2 to 6 years to find a good doc and get the correct diagnosis. So we advise starting on the right foot.)

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.

Well, up again, after my 3rd C/H of the day. They are lasting for so long. None of the preventative meds are working, so I'm going to talk to the medical team about unloading those meds, (Lithium and Neurontin), what's the point if they don't work? I want to go back to work, but after the paramedics having to take me from school to the ER twice in the past two weeks, the district wants the doctors to release me before they let me back. I don't know that I'm physically ready to return, but as a teacher I don't receive disability and the district takes $120.00/day out of my check for my sub, and I still have a mortgage the bank doesn't care that I am so ill.
It's terrible that the word headache is part of these Clusters. When I tell people what is wrong and the word Headache comes up, I feel like they think, Oh, just take an aspirin and call me in the morning...if they only knew the level of pain these C/H headaches bring with them and they are so relentless. I'm so tired. I keep researching, talking to the doctors, eating well, exercising, and having procedures done, but to no avail. I am just thankful for the Golden Girls and late episodes of Law and Order.

I hate to be repetitive, but you still didn't say what other prevents that you have tried.  What abortives have you tried?  Any O2?

Carolyn