Hi I'm Mary and I'm new here. I had cluster headaches 2 years ago but didn't know what they were. I had headaches about every other day for about 3 months and finally got tired of them. They weren't too intense just bothersome, and they went away with Tylenol. After a while they got bad enough for me to go to a neurologist. He told me it was a migraine, gave me topomax, said if it went away that was good, if not come back and he'd do a CT scan. They went away and I was a happy camper. Last week they came back with a vengeance. I have had 9 in one day. They wake me up. They make me feel as though a truck is parked on my head. All I want to do is sleep, although I just read an article that says napping is not good when you have cluster headaches. I did some research and found the literature on cluster headaches. I saw my pcp and she gave me topomax and immediate release oxycodone.  I have been to a pain clinic and the doctor there increased the dosage of the topomax and had me see a chiropractor. I will not allow the chiro to manipulate me in any way, so soft tissue massage and stimulation is being done. I had an MRI of my brain and also a cervical MRI Wednesday. I am not asking for medical advice, but I would like to know if I am taking the right steps. I will be making an appointment with another neurologist next week after I get the results from the MRIs. An interesting thing happened while getting the brain MRI, the beast hit the left side of my head (same side as always). The technician allowed me to take the oxycodone when the headache began. Hopefully it will show what was happening in there. Thanks for reading my story.  :-/

Hi Mary and welcome. You've found somewhere where we all really understand the impacts of headaches, no matter what they are as all headaches can be horrible.

The most important thing which you are working on is to get an accurate diagnosis of what the headache type (or types as you can have more than one) is, this will lead to treatment which should include a preventive to cut down the number of headaches plus abortive(s) to kill off a headache if you get one.

Part of this process is to find a headache specialist as GPs and even most neurologists just don't have the skills and experience to work with complex headache types.

With CH it is simply not possible to sleep you just don't have a choice, however when CH first starts it can take a while, weeks or months, for it to settle down to the classical CH symptoms, so this might not rule out CH for you. But for some other headache types, like migraines, sleeping can be a great way to handle them (sleep is my best option for migraine).

Oxycodone is a narcotic pain killer and this is probably not helping you. If you use pain killers more than about 3 days a week or 9 days a month you're likely to be getting medication rebound headaches just from the medication itself. And it is quite possible that it isn't touching the pain (it won't if it is CH). You're also at risk of dependency issues too, which is all too easy even from just following a doctors instructions (been there myself so talking from personal experience).

Are you keeping a headache diary where you record details of each headache (when, where, duration, pain level, possible triggers, symptoms and anything else). This can help with the diagnosis.

I hope this helps. Good luck in getting your diagnosis.

Hi Mary,
Yes you are taking all the right steps. All the scans are necessary to rule out other nasties, such as tumours. I know when I first got CH I thought I must have a brain tumour because nothing else could hurt that much. It was a great relief to know I hadn't.

As Mike has said, keep a diary and include weather conditions, what you eat and drink, how active you were at the time and any smells you noticed, as well as all the things Mike suggested. All this may help you to identify a trigger that you can avoid in future, and may help your neuro with a diagnosis.

The headaches you had that went away with tylanol were not CH. Not even morphine will work for CH and sleep is not an option during an attack.

There are several headache conditions which are very similar, but they all respond to different types of drug, so a diagnosis often often relies on trial an error of those drugs. When you find the one that works you'll know what headache type you have.

Whatever it is, there is plenty that will help. Good luck with your diagnosis, and let us know how you get on.
Maz.

The problem with diagnosing Cluster vis-a-vis other headache like disorders is that it's a rare disorder. Means that very few doc, even neurologists, have adequate education/training in treating it.

If at all possible, seek a headache specialist. (Note the last sentence in the following.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

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Comes down to a trusthworthy diagnosis froma skilled doc before you get into the rat race of what treatments to use.

Thank you everyone. It took me a few times to find my post. I checked the National Headache Foundation  and found 3 certified headache specialists in Arizona and none of them take my insurance. I can go to Barrows but it's a process to get there. I will get there though. Thanks again. I will post when I get an appointment at Barrows. They are supposed to be the best in Arizona and they are headaches specialists, just not certified.

Mary M wrote on Jan 19^th, 2015 at 1:17am:

...They are supposed to be the best in Arizona and they are headaches specialists, just not certified.

In the words of a wonderful woman, we're not doctors here but we're expert patients.

Do what you must to get a true diagnosis and let us know each step of your journey.

We'll help in every way we can.

Hi Mary
When you make a post, there is a tick box just underneath which will notify you by email when you get any replies.

Thanks, Max. Problem is on the weekends I do not check that email. I found a doctor that takes my insurance though and I have an appointment.