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        Cluster Headache Help and Support >> Cluster Headache Specific >> Help I'm not sure
        
(Message started by: carrilynn on Apr 27^th, 2007, 5:59pm)

Title: Help I'm not sure
Post by carrilynn on Apr 27^th, 2007, 5:59pm

Hi my name is carri and I have been having head pain/headaches for a year and 2 months now. It started last feb 1oth to be exact. I had this dull ache that continued to worsen as the days passed. I went to every doc under the sun and have litterally had every single test I can imagine. I was put on steriods for two weeks and the pain seem to subside. I would periodically get minimal pain from time to time but again the past month it has come on full force again. The pain is in my left temple area. My symptoms include constant runny nose, wierd sneezes or even blocked sneezes, ear feels plugged constantly and sometime eye movement produces sharp drastic pains. It had been the strangest year of my life. I literally thought I was going to die do to a tumor or some sort of cancer. I am now on anti-depressants and am doing much better but it is sooo annoying. (It more than annoying at times) I do not get woken up though in the middle of the night. it is my only saving grace. I have been diagnosed with trygeminal neurolgia but I'm not sure if thats what I have and what the difference is. any help would be apprciated

Title: Re: Help I'm not sure
Post by Guiseppi on Apr 27^th, 2007, 6:23pm

You can take the cluster quiz on the left but what you've described doesn't sound to me like cluster head ache.

I don't know anything about what you've been diagnosed with, but I've seen that term on the board here, hopefully someone else will come along with a little more useful information for you. Sorry you're hurting, hoping you get some relief soon.

Guiseppi

Title: Re: Help I'm not sure
Post by burnt-toast on Apr 28^th, 2007, 5:28am

Many of us have experienced your apparent frustration. It doesn't sound like clusters but no one here can accurately diagnose your condition.

I recommend keeping an accurate headache journal. Use it to record times, frequencies, severity, durations, activities, foods, even weather that may have triggered headaches, medications taken/when, etc., etc. Basically anything that may help establish potenital patterns/basic understanding of your condition.

If your test have come back negative so far, locate a doc. willing to treat your headaches as a specific disorder - not just as an unexpainable side effect of something else. Seek Neurological help from headache specialists. In my experience Neurologists practicing out of headache clinics have proven to have experience treating a variety of headache disorders. The journal will come in handy when reviewing your condition and getting a grasp of a docs. knowledge/willingness to work with you to establish a diagnosis.

Do research on the diagnosis you receive. Make sure it fits with your condition and if you're not comfortable with it don't accept it.

Lastly understand all medications being prescribed - why and what their potential side effects are. Wrong treatments for the wrong reasons are not going to improve your condition. If a doc. precribes something, don't be afraid to ask why and then do some research. Here are two good links that can be helpful and your Pharmacist is also a great source of information.

http://www.drugs.com/

http://www.nlm.nih.gov/medlineplus/druginformation.html

Unfortuantely many of us have had to put in a lot of leg work and time to get an accurate diagnosis. Hang in there - don't stop looking for answers. Let us know how things are going.

Best wishes,

Tom

Title: Re: Help I'm not sure
Post by pieface_49 on Apr 28^th, 2007, 9:55am

Hello Carri,
I know what you are going through. "What the hell is wrong with me?" For 4 years I went from specialist to specialist, never finding out what was wrong. Everyone was stumped. It is a long story. In 2003 the diagnosis was Trigeminal Neuralgia. In 2007, the same Neuro still had the diagnosis as Trigeminal Neuralgia. I could not take it any more and had to find out what was wrong. I scoured the net and started purchasing books concerning Trigeminal Neuralgia. One book in particular, "Striking Back, The Trigeminal Neuralgia and Face Pain Handbook" helped me understand why it is so difficult to diagnose facial pains. Most importantly, the book helped me narrow down the possibilities to 4 possible afflictions and Trigeminal Neuralgia was not one of them. When I read "most trigeminal neuralgia patients do not touch their faces during an episode", I was the opposite. I use excess force (temple, upper jaw, bottom of my upper gums, behind my ear) during an episode. Then I read about Trigeminal Neuralgia triggers. I had no triggers to speak of besides alcohol. Upon talking to a Health Coach through my medical insurance, stating the closest diagnosis I could find was sphenopalatine neuralgia, she brought up "Cluster Headaches". Two days after that conversation, I was here. I read the opening testimonies and what was stated was exactly what I was experiencing.
http://www.clusterheadaches.com

There is one more item that is important. Anyone with cluster headache will say it is a misnomer to call it a headache. I wish I had a headache and cold take a couple aspirin to make it go away.

Striking Back Table of Contents:
http://www.tna-support.org/newlook/educational_files/Striking_Back%20new/TOC.htm

Some different types of facial pains explained:
http://www.emedicine.com/neuro/topic25.htm

Specific types of headaches from Mayo Clinic:
http://www.mayoclinic.com/health/headache-types/HE00007

Hope you find out what is wrong and get the help you need.

Donnie