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agmcbee

Just diagnosed, but I'm not so sure...

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After multiple trips to the doctor and ER for headaches and a clean CT scan, my neurologist diagnosed CH. She said that my eye swelling and pain were indicative of CH (actually, she said Horton's Syndrome). My eyes hurt 100% of the time, and the headaches come and go (2-3 times per weeks) but always leave their shadow. 

 

I haven't seen any posts where someone refers to this eye pain. I have large swellings under both eyes that are bruised, red and raw, and my eyelids are extremely swollen, but not red and raw. 

 

So, I guess I have two questions. Is this eye condition related to CH? And, if so, has anyone found something to relieve the pain?

 

Thank you in advance. It is so nice to have a place to go to ask my questions. 

 

Angie

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Hi Angie

Welcome to the community!

It is typical for the eyelid on the affected side to swell and/or droop....unusual that it would affect both eyes. The lingering pain could be what we refer to as shadows.

What has your doc prescribed in the way of treatment?

Dallas Denny

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Thank you for your responses.

 

My doctor prescribed Imitrex, Dallas. 

 

For the longest time, only one eye was affected, and then about a week ago the other eye "caught up," and now they are both a mess. 

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You don't describe what your attacks (the "headaches") are like.  Can you describe them?

Is it injectable Imitrex, or a nasal spray or pill?  I assume the Trex is just for treating the attacks -- no preventive?

A lot of people find that ginger, particularly as a strong tea, helps with shadows.  You can stir powdered ginger into hot water (it doesn't mix well, but you can get it good enough), or boil slices of raw ginger, or buy a good-quality ginger tea, or even try a strong ginger candy.  Tea is preferred.

I guess I should add that, like you, I am not convinced that what you're experiencing is CH. 

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The attacks are sudden and severe like an ax going through the middle of my face, and then the pain spreads from temple to neck--the whole right side of my head. They last several hours. During those hours, I feel absolutely insane with the pain. The act of breathing hurts. If I had a choice of going through equal hours of labor and birth--I'd choose that (but without the baby to raise...)

 

While the headaches are exclusively on the right side, the "shadow" headaches in between are centered equally, seemingly, in my eyes. 

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Hi, sorry to hear about your eye troubles. I get horrifying pain in my eye during an attack, and usually experience copious tearing and temporary eye "paralysis," and lots of eyelid twitching (throughout the cluster), but only on my CH side. Maybe consult an eye specialist, just to make sure it isn't a separate problem happening coincidentally at the same time as your CH. The problem is, as many of us have experienced, that doctors have a hard time diagnosing and treating CH.

 

I'm not a huge fan of Imitrex, but some people have good results. High flow oxygen works really well for me during an attack. In any case, I hope you find relief soon...

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