Hello,

I'm new here but not new to CH's. I was diagnosed when I was 17. I normally get hit during through fall and spring but this time it came in the summer.

I have been episodic for years and afraid I may be turning chronic. This cycle is so different from others ( I don't even know if I can call it that) I started getting heavy shadows in late June around the 23-24th. I have had these shadows every day since then but never really full blown pain like my last cycles which never lasted more than 6 weeks.

I feel a crazy burning sensation on the left side which usually goes away when I lay in front of a fan or sit directly under my ceiling fan. I also get this tingling sensation like the beast about to appear but...nothing.

Has anyone had this happen before? Could I be a chronic CH sufferer now? I'm getting really worried because it's been almost three months and it happens every day throughout the day..never a week or so without it.

It's frustrating living with the mysteries of Cluster! Not ununusual for the various signs & symptoms to wander and change--in location, duration, intensity. But these chanes don't predict anything except that we will worry and speculate.

This is especially true if this is a new onset of Cluster. Changes can appear for months to a year or more before settling into some stability.

Are you using a preventive, such as Verapamil? Folks who are in/out of cycles, with only a brief interlude, find it helpful to stay on a preventive 100% of the time.

Hope you are seeing a headache specialist.
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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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Print the PDF file, below, and use it to discuss options with you doc.

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Hi and welcome

As Bob said, CH changes between cycles, so it isn't too unusual to experience something like what you're going through. This variation can be anything from cycle times, durations, side of head affected, what preventives / doses work and more.

I'd not spend too much time worrying about the episodic / chronic label as it is just that, an arbitrary line where a cycle 364 days long is episodic and one 365 days long is chronic. How you approach CH with the use of a good preventive plus abortives is unchanged. Worrying won't help.

What preventive do you use and which abortives?

Hi Texaslady,

Bob gives you excellent advice.

My husband has also experienced strange changes in his pattern. For 4 years he had a 3 week cycle in October, like clockwork. Then last year he had a long cycle for a few months in the fall that was basically only shadows, not all the time and not every day. Then this summer he had a cycle in the "wrong" time of year, and it was by far the worst he ever had. I too wondered if he was "going chronic".

My husband's headaches finally slowed down and stopped and we think it's because of the Regimen that he started (see my sig line). It took one month for him to get pain free (no shadows). I'm taking it myself - it's safe and has a very high rate of effectiveness.

Also, please get an oxygen prescription and inform yourself of the right way to do it (yellow "oxygen info" link to the left). It really helps with the pain.

The D3 regimen is working for about 80% of who stick with it. I swear by it (as does my neuro right now).. I've been chronic since 97 and since going on the D3, I've been PF since Oct 21st of last year.

My best advice is get on the D3 and see if that helps.

Where are you in Texas? And do you have a good neuro?  :-*