Hi fellow CH sufferers, I have been suffering with CH for as long as I can remember, as a teenager, people always told me I was faking it or it wasn't that bad, or I was a big baby, but at age 15 I was diagnosed with ECH (Episodic Cluster Headache) and I have cycles about 3 times a year for about a month and a half to 2 months.  It usually hits about 6-8 times a day when I'm in a cycle, but for the past 8 years, it hasn't really been following this path, it's just been coming when it wants to, starts at the left side behind my eye and radiates all through the side of my head to my throat, jaw and back.  I have heard that there are no OTC meds, only a few Rx meds and the only other possibility is illegal substances, which I can't do because I am subject to random tests at work, but I have heard that the illicit LSD and Marijuana tend to help symptoms. 

I am so glad that I am not alone, and at the same time, I really feel horrible for everyone out there that has to endure the same I do or worse and have no hope because I understand how debilitating this is.  I have lost a few jobs because of my clusters, people that don't have it don't understand how cruel the pain really is.  If anyone has any remedies or ANY advice for pain on this, please, I am more than open to any suggestion.  Thankyou to everyone, if I can help anyone in any way, I will, please let me know. :)

Hi Damiana, and welcome,
You have come to the right place. It's true there are no OTC meds which will touch CH. Many prescribed drugs won't either, but doctors are not well educated in cluster headaches, and keep prescribing them. Not even morphine does any good.

Here is what does work - there are a few preventative drugs, Verapamil seems to be fave.

Then there are abortives. Again, the best by far is Sumatriptan (may be called imigran or imitrex where you live) in auto injectable form. The tablets and nasal spray don't work well as they take too long to get in your system, but the injections are fantastic, are easy to carry and easy to use - expensive though. Oxygen is also brilliant as long as it's used correctly. You must have a high flow of at least 15 litres per minute (25 is better) and a non-rebreather mask. If you get the flow or the mask wrong it won't work. Both of these will abort a big one in a few minutes.

Go to the medications tharapies and treatments section of this site and find posts about vitamin D3. It's a regime of vitamins that has been a life saver for many people. If you send a PM to Batch, who devised the regime and tell him your symptoms/story he'll tell you what you need to know.

Also, buy some Redbull. At the very first sign of pain (don't wait till it ramps up) gulp it down as fast as you can. It's the combination of caffiene and taurine in a sudden hit which does the trick, so any energy drink with those ingredients will do. It doesn't work for every one but many people have had relief with it.

Finally, never feel alone. Come back here to ask questions, chat, or just rant and rave if you need to.We all go there from time to time, and we're always here to listen.

Hope this helps
Maz.

If you are planning to stay around:

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.
===============
If you are working with a headacle specialist, would urge you to find one (NOT neurologists).

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.
============
You will hear from folks who have their favorite treatments but print out the PDF file, below. These are the most commonly used meds and the article is a good tool to guide discussion with any doc you see.
====

These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
-------
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.

---