Hi, I'm new here. I have been searching for a diagnosis for years and still don't have one. So frustrating! I've had headaches since I was a child, I'm now 37 and still no relief. The headaches have been getting much much worse over past few years. Been to several Drs with no results. I have a constant headache which varies in intensity but is always there. It can get very debilitatingly painful. Pain is never in same spot and can change during the headache itself. Sometimes it feels like there is a man inside my head pushing against my forehead or temples trying to get out. Sometimes, it's a pulsating headache behind my eyes. It changes locations, usually in forehead or in back of head and neck. This recent episode started on March 31st and hasn't stopped. The start of the headache was extremely painful in right forehead going down to my neck. It made me feel hot and sweaty. Pain was so severe I could barely walk. I couldn't move my head without feeling more pain or nausea. It was the scariest medical situation I have been in and I honestly should have gone to the hospital. I wish I did so I could have had tests done while in that state. I've had several ct scans, MRIs, etc, with everything coming back mostly normal. I've done PT for my neck but that has short lived results. Been on several medications with no help. The only thing that seems to help when I'm in extreme pain is laying down flat on the floor. It seems to relieve the pain or pressure. Not sure why but thankful I discovered something to help. I'm at my wits end. I'm having trouble living, working, being happy. Terrified of a headache coming on at any moment. One minute I'm fine, the next I'm in extreme pain with no warning or cause. I can't figure out the trigger. I know I am not diagnosed with cluster headaches but I'm hoping someone here can help. Thanks!

All headaches are horrible, AJ, and we empathise completely. Tell us whereabouts you live and perhaps we can steer you towards a headache specialist.

Doctors try to help, certainly, but it really does take an expert to get you started on a road to recovery.

We're here to help,

B.

Hi Alison, and welcome,
The way you explain your headaches don't sound like CH's your suffering from. So, it's best to check in with a Headache Specialist for a proper diagnosis! Their are many headache types that mimic CH's, but aren't CH disease.

Hoppy

Hi Alison and another welcome to a place where everyone understands just what impact headaches can have on your life.

What we can't do is to give you a diagnosis, instead as Brian and Hoppy have suggested, the recommendation that you see a headache specialist to give you an accurate diagnosis and get you started on whatever treatment you need for whatever it is.

Are you keeping a headache diary?

Hey AlisonJoy,

Welcome to CH.com.  You've come to the right place.  Lots of great information here from hundreds of long time headache sufferers.

I've sent you a pm with some information on other types of trigeminal autonomic cephalalgias (TACs) you should discuss with your neurologist.

Take care and please keep us posted.

V/R, Batch

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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There are many disorders which appear to be Cluster but which are not headache problems. After so many years of suffering it's time to find a headache specialist, if at all possible. (Be cautious about neurologists for, as a group, they have limited training/experience with headached.)
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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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And please don't start and self-help treatments which you see here. Without a good diagnosis, the chances are that you keep wandering without effective help.

Hi,

Thanks for all the help, information and most of all support.  I live in New Jersey.  Looking for a headache specialist...mostly afraid of not seeing a good one and getting even more discouraged.  I have seen many many doctors in many different specialties trying to track down the cause and treatment of these headaches.  It is so frustrating, discouraging and depressing.  I know it may not be cluster headaches that I am suffering from but it is good to know that there are supporters here who understand how horrible an impact any kind of head pain can be on ones life.  Thank you all for your kindness and support. 

I think I understand that you have not seen a headache specialist--and so you are doubtful about trying the real thing. That doesn't make much sense.

Too many people tell us stories of wandering around for years trying a variety of "fixes".

alisonjoy79 wrote on Apr 20^th, 2016 at 3:38pm:

Hi, Thanks for all the help, information and most of all support.  I live in New Jersey.  Looking for a headache specialist...mostly afraid of not seeing a good one and getting even more discouraged.

Hi Alison, NJ is a big state, so not sure if this will help. I see Dr. Naik at the Summit Medical Group in Berkeley Heights. Off exit 42 from I-78.

NAIK, KOMAL D., DO
Neurology
Summit Medical Group
Berkeley Heights Campus
Wittmann Pavilion, 2nd floor
1 Diamond Hill Road
Berkeley Heights, NJ
Phone number:
908-277-8639

Good luck finding some relief.

Welcome to the site. If you haven't taken our "cluster quiz", click on the link below. This will help you decide if CH is what is causing your pain

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

Don

To Marlins Fan,

Thank you so much.  I live in Randolph, so Berkeley Heights is a perfect location.  Thank you so much for the information. 

Alison