I went to see my doctor today with a letter that I got from the hospital a year ago sayin I suffer with CH...... As I haven't had a ding dong head for almost a year I never took the letter presuming the hospital would send notes to the doctor,, so when I told her today that thay have started again 2 days ago and that I haven sleeped or eaten or moved in 2day pain is too much she had me out as quick as you can say cluster, with some tablets I've never heard of, but since reading up on them I'm not even sure there what I should take I'm a little scared!!!! There called carbagen, 100mg ( carbamazepine) 2 a day???? Please help I'm so worried now about next ch comin and have nothing to take feel to cry!

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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First step: get a new doc! The complexity of headache, of all types, is such that you need skill/experience. So, if at all possible:

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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Skill is also needed because there are many disorders which mimic Cluster but which are not headache disorders. Some are raher serious so gettin a solid diagnosis is essential BEFORE giving any thought to treatment.

Print the PDF file, behow. ASSUMING you have Cluster, these are the most widely used meds to treat. Both infor for you and a nice tool to use indiscussing you options with any doc you see.
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Finallly, remove your post in the medication section. Duplicating a message will confuse readers who can't follow one line of interaction when the same content is posted in two locations.

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Hi,
Carbemazapine's primary usage is for epilepsy but it is also good for some headache conditions as it quietens down the head/facial nerves - but not CH. It was the first drug I tried and apart from making me vomit several times a day it had no effect what so ever.  Then I tried Gabapentin, also an epilepsy drug and equally useless. They won't do you any harm as epileptics take them for life, and it may well be worth giving them a try as you may have been misdiagnosed which is VERY common, as the different headache conditions are so similar.

It's vital to get a correct diagnosis from a headache neurologist, as the different conditions all respond to different drugs. If it turns out that your diagnosis is correct and you do have CH then the drug you need is Sumatriptan ( may be called imigran or imitrex depending on where in the world you live). It comes in pills, nasal spray and auto injections. The pills take too long to get into your system to be of much help, the nasal spray is a little better, but the injections are brilliant and will abort a big one in a few minutes. There are also several preventative drugs that work well.

As I said the different conditions all respond to different drugs so if sumatriptan works for you, then you have CH. But the diagnosis is VITAL, so ask your doctor to refer you to a neurologist.

In the meantime get some redbull energy drinks. At the very first sign of pain (don't wait till it ramps up) drink it down really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick so any energy drink with those ingredients will do. It doesn't work for every one, it didn't for me, but lots of people on these boards say it helps to abort CH. It's easy to get hold of, so worth a try.

Please get that neuro appointment. It's the first step toward getting your life back.
Maz.

Akeroid,

Follow Bob's suggestions... particularly in finding a physician experienced in the treatment of patients suffering from cluster headache and other trigeminal autonomic cephalgias. He's spot on!

While you're looking for a good headache specialist, see your PCP for a lab test of your 25(OH)D.  This is a metabolite of vitamin D3 that's used to measure its status. 

The normal reference range for 25(OH)D is 30 to 100 ng/mL.  From the data we've collected from hundreds of CH'ers here at CH.com over the last three years, nearly all were vitamin D3 deficient...  i.e., a 25(OH)D serum concentration less than 30 ng/mL.

If your labs come back indicating a vitamin D3 deficiency, see the following links for an effective course of action in treating that deficiency:

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Regarding Carbamazepine... it's an anti-epileptic/anti-seizure medication with off label use in treating facial nerve pain (trigeminal neuralgia).  It has limited efficacy in preventing CH and it carries the following warning:

"SERIOUS AND SOMETIMES FATAL DERMATOLOGIC REACTIONS, INCLUDING TOXIC EPIDERMAL NECROLYSIS (TEN) AND STEVENS-JOHNSON SYNDROME (SJS), HAVE BEEN REPORTED DURING TREATMENT WITH TEGRETOL. THESE REACTIONS ARE ESTIMATED TO OCCUR IN 1 TO 6 PER 10,000 NEW USERS IN COUNTRIES WITH MAINLY CAUCASIAN POPULATIONS, BUT THE RISK IN SOME ASIAN COUNTRIES IS ESTIMATED TO BE ABOUT 10 TIMES HIGHER. "

See the following links for more details:

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There is a Standards of Care set of recommended treatments for CH developed by a international team of neurologists from the European Federation of Neurological Societies.  These neurologists are recognized for their expertise in treating patients with CH.  Their recommended treatments are illustrated in the following chart:

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You can find more about these treatments at following link: 

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I've had the opportunity to meet one-on-one with three of these neurlogists. Dr. Arne May, Dr. Peter Sandor and Dr. Peter Goadsby. 

All three prescribe oxygen therapy as their first abortive of choice along with a triptan-based nasal spray or SC injection as a bailout/escape abortive.  Abortives are used to stop/abort an attack.

They also prescribe a short duration prednisone taper while titrating up on verapamil as a preventative course of treatment.  All three suggest an ECG before and after starting verapamil to ensure you don't have bradycardia as a result of taking it.

All the above isn't going to do you much good in the mean time.  So here are a few things to try that many of us have done. 

Ice packs to the side of the face or top of the head on the hit side can help dull an an attack. 

I prefer a single ice cube wrapped in a wet paper towel on top of the head just off center on a line even with the front of the ear.  There's usually a tender spot that's not too difficult to locate. The skin will sting a bit for a few minutes but as the cold sensation deepens, you're experience a numbing effect on the CH pain.  If you're worried about your hair, wrap the paper towel and ice cube in some stretch wrap.

Drinking a cold Red Bull at the first indication of an attack works for many CH'ers.  Hyperventilating with room air can also help with CH attacks at the lower pain levels but isn't much help with heavy hitters.

Taking melatonin before bed buys some CH'ers additional pain free sleep.

Check your PM inbox at the upper left of this window.  I've left you some additional information.

Take care and please keep us posted.

V/R, Batch
 

It's helpful that we know you are from England for you have some excellent services at your front door.

We received regular comments about the poor care from local docs in England: apparentlly limied education/training re. headache.

And we have been told that you have the right to by-pass local docs and be referred directly to speciaity headache clinics.

So, work with your excellent support group. They will advise you on making such a move along with providing  the full range of assistnace that you will find at CH.Com.

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