Hello, my name is Rex.
I was recently diagnosed (Dec 2014) with cluster headaches. It was a diagnosis given by the P.A. that  I see. I have not been to a specialist and the P.A. was giving her opinion on what she thought I was suffering through, so it is not an official diagnosis. From the research I have done and from what I have read on this site, I believe she got it right.

I initially started having problems about 10 years ago. My first attack came during the afternoon. I felt like my eye was being blown up like a balloon and could pop at any moment. I took ibuprofen and some eye drops. an hour later I was fine. I would experience this about 2 times a year, never paid attention to the timing, but looking back it always seemed to happen in the fall(the worse) and the spring. Usually I would just take some pain meds and suffer through. A few times I became nauseous and always attributed it to the pain. Since they were not chronic, I never mentioned them to the DR. Except for the occasional sinus infection I would have..

It wasnt until this past December that I ever saw a DR about it. I was absolutely crippled by the pain. It started just afternoon and slowly grew in intensity I took ibuprofen but it did not help after an hour or so the pain began to intensify and everytime I stood up I felt like vomiting. I managed to get an appointment with my Dr at 3:30 that day. I spent a little time by the toilet thinking that death would be a welcome comfort. On the way to the DR. I vomited. To my surprise I felt a bit better afterwards. The pain was still significant but it had dialed back a couple notches. I described everything to the PA and she asked very specific questions and then told me that she thought I had cluster headaches. I had never heard of it and didnt care what it was called. I just wanted it gone. Once more in her office I vomited again. She then gave me an anti nausea shot. Gave me some prescriptions and sent me home. The pain slowly dissipated. And later that night  I was exhausted.

Since then I have done research and discovered the possible pattern of having them during the solstice and equinox, right then it made since that, that is when I usually have them. It also made me dread the coming Spring Equinox. So far I have only noticed a pattern of what I have heard some describe as shadows. Perhaps just mild forms of the CH.

Also after reading through this site, I guess I would consider myself blessed. I usually only have one attack in a day and only about twice a year. (Except for the now learned of shadow) I have not taken the sumitriptan yet, because I havent felt the need. I have been tolerating the more severe shadows.


Just a little background.

I live in Rock Hill, SC
I have seasonal allergies
I take cholesterol medicine
I am low on vit D (this part of the site really interests me)
In 2009 I contracted MRSA deep under one of my ribs(medical mystery) It was the single most excruciating pain I had ever felt(the after surgery part).
I must say my most recent headache made that seem like a walk in the park.

Hi Rex and welcome,
Maybe take the cluster quiz. The link is to your left on
this page.

Hoppy.

Hi Rex
It does sound like CH, but you really should ask your doctor to refer you to a headache specialist. The reason, - there are many different headache types that mimic CH. They all feel the same but are caused by different reasons, and therefore require different meds. And meds that work for one condition will not work for the others. Trying out the meds to see which one works is often the only way a diagnosis can be made.

Pain meds will not touch clusters, not even morphine, so don't waste your money and risk your health taking unnecessary stuff.

What kind of Sumatriptan do you have. The pills take a long time to get into your system and often the CH has run it's course before they start working. The nasal spray is a little better, but the auto injections are fantastic, and will relieve the worst CH in less than 10 minutes.

Ask for some oxygen, but you must have a flow rate of at least 15 litres per minute with a non rebreather mask.If you get either of those wrong it won't work.

You also mention D3. Yes, it is interesting indeed. If you shoot off a PM to Batch (he developed the regime) he'll help you sort it out and tell you what you need.
Hope this helps
Maz.

Thanks for the replies.

Hoppy, I did take the quiz, the results were inconclusive.

Maz, Thanks for the advice. The next time I meet with my Dr I will discuss getting referred to a specialist. Unfortunately there are no headache specialists in my area but there are no shortages of Neurologists. I have the pill form of Sumatriptan. At the time I did not know if there was an alternative or have enough knowledge to question it. I will bring this up with my Dr next visit. I will PM Batch soon. I am having my bi-annual blood work done next week so I can see what my D3 levels are and get a baseline of where to start.

A few details I accidentally  left off from my initial post.
I am 36 years old.
Last year(oct) I began getting allergy shots. I saw on this site that Histamine can be a trigger. Is it possible that my recent allergy injections could have caused my latest attack to have been more severe?

Avoid neurologists unless they "certify" that they have had experience/training with headaches. As a group, they have meager training with complex headache disorders.
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Print the PDF file, below, and use as a discussion tool witwh any doc you see.

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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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Hi Rex,
I've never heard of allergy injections as being a trigger,
but pollen is a major CH trigger in some folk.

Hoppy.

So after a long delay I have an appointment with a neurologist. I tried finding a headache specialist, but there only appears to be one in my area and from what I am hearing, there is a long delay in getting appointments there. Plus they are outside of my insurance network. I tried a local "pain center" that advertises cluster headaches as one of their treatable conditions, but they require I go through a Neurologist.

What advice can you give me for dealing with a Neurologist? What kind of questions should I ask? If they have little to no training on CH is there a chance I still will not get a proper diagnoses, assuming it truly is CH?


Also, thanks to Batch for his willingness to help and answer all the questions I had.

Did you check the Charlotte area?

All you can do is ask him diectly about his training an experince with Cluster.

We have seen Neuros claim experience and then use treatments which are quite out of date/inappropriate. Prolem is that you have spend some money to find out if he has both experience and honesty.

I assume you used the earlier material abou how to search for a Headache doc....

Bob

Thanks for the reply. I did check the Charlotte area. Most of the "Headache clinics" where run by former dentist who are treating headaches with something called trudenta. The one specialist listed in the material given to me on here, is the one that has the long wait(Sara SAcco). If I need to I will persue that route, but as you said, after I have spent some money elsewhere.