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johncluster

does your pain start from the back of your eye?

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does your pain start from the back of your eye?

and then just spread around , and turns into a pounding headache?

I still cant believe even after 10y , that I have CH

It is just highly improbable ,

I never went to eye doctor for this,, anybody went to eye doctor and got healed?

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Hi John,

Always behind right eye for me but more on the upper side between the eyebrow and the eye. Some kind of crunching tension

However if it stays there it will most likely only be a shadow that can stay there for hours and hours. The real attack comes with fullness in the ear. Once I start to feel pressure in my right ear and become glowingly hot, I know its time ...

Why do you think you do not have CH ? Is there anything in your symptoms that go against it ?

Best Regards !

siegfried

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Quote

Why do you think you do not have CH ? Is there anything in your symptoms that go against it ?

My symptoms are all there, but it's just such rare dissiase , that I can't believe it.  Also the fact that there isn't a specific concrete test - like  a blood test,  it makes me wonder.

That pain around the eye combine with the headaches , is so weird, it feels like there is smt wrong with the back of my eye.

But it has been like that for over 10y.  So 99% symptoms of CH , but sometimes I wonder if I should go to an eye doctor

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On 3/29/2019 at 2:56 PM, doctorssuck said:

Mine starts in the neck and then move to the jaw and teeth before attacking the right eye. 

 

Exactly! I meant to say neck, jaw, eye. 

On 3/29/2019 at 5:47 AM, Siegfried said:

Hi John,

Always behind right eye for me but more on the upper side between the eyebrow and the eye. Some kind of crunching tension

However if it stays there it will most likely only be a shadow that can stay there for hours and hours. The real attack comes with fullness in the ear. Once I start to feel pressure in my right ear and become glowingly hot, I know its time ...

Why do you think you do not have CH ? Is there anything in your symptoms that go against it ?

Best Regards !

siegfried

The crunch is always in the neck for me. I even call it the crunch lol.

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Actually my first diagnosis in my teens was from an ophthalmologist and it was transient glaucoma episodes in my right eye. He prescribed diamox the typical glaucoma medication. So in the middle of a horrific cluster headache I am throwing down diamox like m&m’s with absolutely no impact. Huge overdoses of diamox. I was told later that I could have collapsed structures in my eyes. 

The ophthalmologist finally referred me to a med college ophthalmology department and a resident did my intake. I start going through my symptoms and he asks a few questions and his questions are extremely appropriate. He says I know what you have-cluster headaches. The ophthalmologist then concurred. This was in the 70’s. At least I knew what was happening then because the treatments in any event were ineffective  I went through the usual cafergot and sansert and propranolol but nothing helped.  I just had to ride them out and try to manage so not a big ongoing impact on my life.

Nothing like sitting at work trying to survive an attack with a droopy red tearing eye and half your face noticeably swollen. I always felt elation when I survived a headache and especially when a cluster wound down.  My clarity of thought was always outstanding after a cluster ended.  I usually had one full blown mfer in the afternoon during work hours and a less severe attack in the morning. I knew just needed to make it till the end of the work day without a complete collapse or a screaming episode and then could deal privately at home with the evening and night torment  

 

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