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Maybe you should tell your doc about CH and ask what doc think about it? i have migraine, and from what you describe, i can`t say it sounds like migraine to me. But you need to get a proper diagnose from a neuro.

I guess most of us in here are told migraine in the beginning. Because it`s more common or i don`t know why. But i always kept thinking "why do migraine hurt me this bad, when others can take the pain?" So i kept my mouth shut, i didn`t want to rant or be a whimp. And again, i think this is a common thing among the people in here. we get isolated with the pain, because in the end we feel as what can we do....

Don`t give up on that one, keep searching until you get taken seriously!!

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Happy is good!!!!

I have some of my medical records dating back to before I was diagnosed with migraines and CH's. It took a long time to figure out what was wrong with me because the symptoms of migraine intertwined with the symptoms of CH.  For example, I described my head/eye feeling like it had a tent stake driven through it while rocking back and forth, pacing, screaming and at the same time I was also  sound/light/smell sensitive with nausea.  Sudden, sharp pain behind my eye along with my head throbbing and feeling squeezed.   It's no wonder it took forever to get diagnosed.  Charting every pain/time/frequency helped my doctor make the proper diagnoses. 

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Mhm! I havent tasted happiness like this forever! Missed it! :D

I got a chart from my doc to take notes on pains, when, where, frequency etc. to bring to the neuro she referred me to! She said she thought it might not be (just) migraine.

She gave me some sumatriptan tabs. Hmmm.. sceptic..

The ball seems to be rolling!!

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First time i talked to another CH`er, i started to cry...

I was standing in my kitchen, banging my head on the bench. LOL, seems unreal now. "It`s just so horrible" i told him, he said "I know, it really is". That was all i needed, i never been so relieved by words. Because i knew it was true.

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  • 1 month later...

Hey, people!

Last day of the year!

These last months have been so good! Minimal pain compared to my normal state. Have dosed once or twice pr month to keep the pain away. After two weeks I usually feel it coming back.

The positive effects have not been limited to the HA's but also my neck, back, muscle and joint pains have been so much better! And my inner energy and light has gotten fueled up. I've been a happy lad :D I am sooo happy I chose to try shrooms out. They're a real blessing from mother earth.

2011 will certainly be my best year in these past 15 years. Life is progressing positively and I'm looking forward to what it has to give.

Happy new year, everybody! :D

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I would go see a specialist. It sounds to me like you have some cluster activity. Does it happen at random times or is it more of a consistent thing. Clusters seem to come on in a hurry and go away just as fast. You may have one once a week or 4 a day or more.

Can you explain your symptoms more?


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Yes, it does sound like CH to me too. But unsure, If i have CH I also think I have migraines. And some other headache thing.

I rarely get attacks out of the blue, it has happened, but mostly I can feel them coming on. I'll paint a picture.

Weeks 1-2: HA sits in front, forehead, behind and above eyes and at the top of my head. The pain is annoying and destracting.

Weeks 3-6: Left side pain. Eyesocket, jaws, neck, shoulder, nose, teeth, palate. Kind of like kip 3-6. Restless. Munchies. Sometimes a bit queasy. Easily tired. Getting difficult to stand up right. Throbbing pain if I move around. Light and noise must be kept down. My face starts to feel drowsy, tender. Feels like my eye and muscle around is loosing power. Dry mouth at times.

Weeks 7: As above, but worse. Wake up at night with intense pain. Often 03.20 at night. but usually only 1-3 nights. Cant sleep. Restless. Cant stand up. Want to tear my head of and die. Heavy breathing, feels like my head dont get enough air. Massaging and "hitting" my head. I dont make much noise, screaming in silence.

Week 8: Getting down for up to a week. Pain decreasing. Much like weeks 3-6. Then some days or maybe weeks with not much pain, then back to start.

Sometimes the process is longer, sometimes shorter. Its such a mess that I havent seen any clear pattern until lately. Before I came here I thought it was regular migraines, but after reading and talking to people it seems like it more than just migraines.

BTW, one can see it in my face, that the left side is kind of sagging.

Going to a neurologist in 2 months. :) Hope he can give me a diagnosis, annoying not knowing whats up.. :)

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