I everyone,

My first cluster headache was approxinately 4 years ago. I have not been diagnosed by a neurologist, though i have an initial appointment coming up, and am anticipating that getting correctly diagnosed will be difficult, but my symptoms all align with those of cluster headaches. In the past I have had very short, 3 days out of one year cluster periods, and even skipped a year at one point, so until recently they have not impacted my life very much... this year however I am currently on week four of once a night headaches...

I am really interested in the D3 option, that i have seen referenced in a few messages, as it seems like it would have less side effects compared to trying a range of medications, which I anticipate the  neurologist recommending. Does anyone have any information or could you point me into the right direction to learn more about this???

Thanks in advance, and I am so sorry that so many people suffer from such horrific pain... so hopeful that this cluster period is almost finished :(

Amy

Well after reading through some other messages I have found the D3 regime! Cannot wait to try this, I have been ineffectively using way too much tylenol....

Get diagnosed by a headache specialist.

             Potter

One trip to my gp, explained symptoms and history of the headaches and he called it right away. I had felt they were cluster headaches for a while, but kept thinking it was sinus, which was my last doctors thoughts. Been to neuro too, simple verbal exam, classic cluster headache. Been on Batches' d3reg, after testing quite low for vitD. My headaches are due in the next few weeks, I am really hoping they don't show or at least not as bad as the last episode. The headaches have geen going on for several years. I will report back reguardless.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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We have broad experience which says: neurologists have limitged training/experience with Cluster.
Unless you can confirm that he has traiinging/experience with complex headache disorders, the chances of good treatment is improved with a headache specialst.
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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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Glad that you are seein a doc for Cluster is a rather complex prolem to diagnose.  See:


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

I currently have an appointment with a neurologist next week when I called they say they deal with headaches a lot. Should I instead find a headache specialist?

Amy,
You have the appointment set up. I would suggest you go ahead with it next week and see how it goes.

You can always change . You would not be the first to change their neurologist because they are not satisfied.

Let us know how you get on and best of luck.

Peter.

I too strongly suggest you do not rely on a self diagnosis as there are multiple other causes of CH symptoms which make the diagnosis need skills and experience beyond what can be done with self diagnosis, GPs and even most neurologists.

But do keep your neuro appointment, it will be a step along in getting the diagnosis and ruling out potential other causes of the symptoms.

When someone "deals with headache a lot" this could be that they see a lot of people with tension headaches and migraines, or it could mean the full set of headache types of which there are many.

Whilst we may sound like a broken record in saying "go see a headache specialist", several times a year people who have posted here return and there is another cause of their CH, with some having an issue that could have killed them if they'd either self diagnosed or gone off the diagnosis of someone without sufficient training.

One you have the right diagnosis, this opens up what is the right treatment for you and your headaches.

After you're appt give us a report about his Dx, what treatments he is using. On the meds: drug, dose, frequency. This will give us a clue abou his knowledge of Cluster.

Hi! I wanted to give an unpdate..

I began the vitamin D3 regimen about 1.5 months ago, I believe it definitely prevented my headaches after about a week or two of taking the vitamins. I also believe that I am in a remission period right now, thank goodness! And so thankful for this group and the vitamin regimen as I'm sure it is helping with more than just the headaches.

I finally got into a neurologist, and was diagnosed with cluster headaches right away. She also stated that she will prescribe me oxygen in the future if/when I experience them again, which I took as a good sign after reading so many posts in this group!

Again, so happy I found this place and so happy to be pain free for now, with a plan!!!

-Amy