Well, I'm new to the site and I'm glad that I found you all! I have only recently begun to experience these cluster headaches, and although I haven't been formally diagnosed (I'm waiting for my appointment) I have no doubt that the headaches I am having are cluster headaches.
Just a rundown of what I'm experiencing. I gte the "shadows" or tell-tell signs that I am going to get a cluster. These signs are burning, stabbing pain around my orbital area. Within a few minutes to 30 minutes I've got a full blown headache.
These headaches are ruining my me and my family when I get them. It started about 3 weeks ago when I woke up in the morning with an excrutiating eye burning, stabbing, near unbearable pain, unlike anything I've ever experienced before. I had no prescription medication and thus took edcedrin migrane, thinking it was a migrane. that was a joke, it didn't even make a dent in my pain.
My husband had to call in to work that day just to take care of our three children ages 6,3, and 4 months. I was incapacitated for nearly 3 hours. Since then it was like a wall of pain and headaches have plagued me. I got two more that day and have subsequently experienced 3-4 a day, often times having one wake me in the middle of the night.
Thus far, I have no recourse for these excrutiating day/night ruiners. I need help. I am waiting to see a neurologist in the meanwhile. Does anyone have any suggestions for controlling them or at the very least lessening the pain or duration.
I have three young children and have been suffering for the past 3 weeks with about 3 a day. I am beside myself in pain. Any suggestions for what i ought to say to the neurologist or family doctor? anything helps.
thank you so much!

Hi JK,

That sounds truly horrific - very sorry to hear what you're going through.  :(

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Have you confirmed that the neurologist you will be seeing has expertise in headache? Majority of general neuros. have little training/experience with Cluster and too often we get inferior care. Suggest you call his office and inquire from a staff person--don't have to talk to the doc.

If the infro is not comforting, consider:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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.

Welcome JK,

Read as much on this site as possible, get to an experienced Neurologist and properly diagnosed.

I remember all too well when mine started years ago, proper diagnosis is the first step towards proper treatment, as they will want to rule out possible other causes. Start there.

Not all physicians are familiar with CH, so be specific in your explanations.

I wish you well, and if you are a CH sufferer, know there is a lot of information on this site, and a lot of sympathetic sufferers and supporters to comfort, advise and sometimes, just to be here for you to vent.

Please feel free to PM me should you need anything.
Hopefully you will be pain free soon.

Baer

Hey JK, and welcome. You are getting hit hard and we understand. It can seem interminable waiting for a neuro appointment. I'm not sure what BJ sent you, but I would recommend you pay special attention to the links on the left. Take the CH quiz and print it out to bring with you. It may help your neuro assess the symptoms you are experiencing as they relate to CHs. Read the Imitrex tip and ask for injectables. Read the posts on Melatonin, Oxygen, energy drinks and the Vitamin D3 regimen. There are steps you can take while waiting and they help you feel more in control. If you have any questions do not hesitate to ask any one of us. Blessings. lance

Welcome to the board, I'm so glad you found us. We have a saying here that knowledge is your best ally in the battle with the beast. The more you know, the less you'll hurt. ;)

Joe