I have had these head aches for such a long, long time. They did, however save my life. because of the headaches i got an MRI, which found 2 brain abnormalities hemreging into my brain. I had brain surgery on 04/15/2009 which was successful. But I still have the CHs. I'm a school teacher and we don't get disability ins. So, I've been trying to go to work, but I've been taken to the hospital twice by paramedics from school. I don't think anyone realizes how debilitating these headaches are. I'm not working and can do nothing except wait for the next bout. I've lost friends and my spouse tries to be supportive, but I can tell he's getting sick of my condition, can't blame him.

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

What medical treatment are you receiving for the headaches? Are you seeing a headache specialist?

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!!

Any other meds and have you tried oxygen?  Plus, if you're taking *pain* meds (as in narcotics), they don't really work with ch. and can cause rebound headaches.

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. 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.  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. 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.

What Bob said about headache specialist (good) vs. run of the mill neurologist (usually BAD).

Injections into nerves. Sorry, but not surprised that isn't working. There's not a particularly high success rate with that approach from reports I've seen.

For a good idea of what folks have found to work best here, I'd recommend looking at several of the posts in the Getting To Know Ya message board, you'll see a common thread running through them I think.

The newer method of administering O2 as an abortive is very effective. Check it out at the oxygen info link on the left of this page if you haven't already.

Have you tried self administered imitrex injections (or inhaler if you're in the midst of teaching a class) for aborting attacks? WAYYY better success rate than the doctor's office injections into nerves routine.

So you're trying the preventative drugs and they aren't working. Well maybe it'll come time at one point to just cut the BS, ingest a little bit of some medicinal plant with little to no side effect and potentially see some real results.You certainly won't be the first one. You can research the subject over at clusterbusters.com.

They're not launching clinical trials with promising results at Harvard Medical etc. in regard to this for nothing - meantime your options could range from the most illegal, and probably most effective, sub hallucinogeic doses of psylocybin, to the legal to mail order Rivea Corymbosa seeds.

Plenty of other herbs like Kudzu and stuff to explore, so slap on that researching cap, and take this beast by the horns (clearly just entrusting your care to doctors isn't working for you right now with the CH). You came to the right place, I bet you can get some relief.

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 am so sorry you are going through this. I have become quite familiar with late night TV myself. I am about 5 weeks into the most painful cycle I have ever experienced. I am headed to my docter today for further treatment.
I absolutely hate missing work. Like you, I feel that when people hear "headache" they dont see what the big deal is. I am a nurse and the majority of my coworkers have never heard of cluster headaches. I feel they will never understand what I go through without witnessing one. My boss did say that although he has had some pretty bad headaches, he couldn't imagine the pain of a CH. That made me feel like he did understand to a degree.

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

Here are lists of the most common medical treatments:

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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