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wornwhite

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Persistent eye pain?
Oct 16^th, 2012 at 10:31am

Does anyone here experience persistent eye pain?

Since getting on verapamil a week ago, I haven't experienced any huge attacks that are waking me up, though I'm suspicious I'm still getting hit while I'm asleep. I wake up with eye pain in the right eye, but it doesn't go away at all.

Went to the ophthalmologist and he didn't see anything out of the ordinary. Had a neck MRI last night and headed back to the neuro today. He thinks I may have Trigimenal Neuralgia going on as well as the CH.

Was just wondering if anyone else experienced lasting eye pain after an attack.

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Bob Johnson

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Re: Persistent eye pain?
Reply #1 - Oct 16^th, 2012 at 12:13pm

Perhaps, a touch of "shadow"--the residual irritation after an attack or a bit of breakthru because the Verap hasn't become fully effective yet OR, may need to increase the Verap dose a step. Continue to work with the doc on dosage adjustments and try and be patient until some stability emerges. Often takes a few weeks to get all the pieces working.

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Bob Johnson

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wornwhite CH.com Newbie Offline I Love CH.com! Posts: 8 austin Gender:	Re: Persistent eye pain? Reply #2 - Oct 16^th, 2012 at 12:35pm I'll talk with him about dosage today. I'm only on 240mg. I was surprised I saw such a decrease in pain after that small of dosage. My BP is already so low though, it makes me nervous. Thanks for the response.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Persistent eye pain? Reply #3 - Oct 16^th, 2012 at 6:40pm Have never had "eye" pain, my low level attacks and shadows are more the clawing feeling behind the eye.....I would describe it more the brain area behind the eye then I would the eye....if that makes sense! Bob's advice is spot on. Joe
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wornwhite CH.com Newbie Offline I Love CH.com! Posts: 8 austin Gender:	Re: Persistent eye pain? Reply #4 - Oct 16^th, 2012 at 8:53pm yesss. that makes more sense. feels like someone is pulling at the back of my eye from my brain.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Persistent eye pain? Reply #5 - Oct 16^th, 2012 at 10:30pm I call those shadows. You know beasty is there....he's trying to break in....but he can't quite get a toehold! Joe
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wimsey1

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Re: Persistent eye pain?
Reply #6 - Oct 17^th, 2012 at 8:33am

When I have several attacks in a short period of time, my eye is sore, like it's been punched repeatedly and even though the punching has stopped, the effects remain. This is different for me than a shadow. A shadow is definitely a CH that hasn't quite taken hold, persists, and is resistant to O2. I treat it with O2 but it comes back fairly easily and quickly. Eventually, if I get tired of it, I hit it with a Migranal or Trex. blessings. lance

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lydia nichole CH.com Veteran Offline I Love CH.com! Posts: 139 Manassas, Virginia Gender:	Re: Persistent eye pain? Reply #7 - Oct 17^th, 2012 at 4:05pm lidocaine nasal spray has saved me from the shadows that i have consistently all day ! i no its still there but i cannot feel it because the lidocaine numbs it ! if you haven't tried this talk to your doctor about it. try the spray tho not the gel. you have to get it from a compounding pharmacy.
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lydia nichole CH.com Veteran Offline I Love CH.com! Posts: 139 Manassas, Virginia Gender:	Re: Persistent eye pain? Reply #8 - Oct 17^th, 2012 at 4:06pm plus there pare no side effect really with the lidocaine (atleast for me) unless you are allergic to it.
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moneymaker

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Re: Persistent eye pain?
Reply #9 - Nov 1^st, 2012 at 7:23am

yes i get the eye pain and during a large scale hit i swear my eye will blow out of its socket,my clusters start either in the eye upper sinus area or in the ear jaw area,mine will go from eye to temple to jaw to ear then back of neck,,,,at times it feel like the worst headache one can think of along with the worst ear ache and tooth ache,,not had a bad attack since last week which lasted 5 1/2 hours but lastnight i had 1 small attack,,,,seems i am getting closer to being done with my cycle and i for one will be happy when its done,but yes my eye is still watery thru the day and feels scratchy.

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brian trudeau

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his arms are around me
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Re: Persistent eye pain?
Reply #10 - Nov 1^st, 2012 at 9:00pm

"feels like someone is pulling at the back of my eye from my brain. I call those shadows. You know beasty is there....he's trying to break in....but he can't quite get a toehold!"

No better description Joe.
I know when his grip is slipping the cycle will end soon. Hoping everyone including myself feel him lift away soon.
BriBri

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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...

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brian trudeau

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his arms are around me
and his tounge in my
eye

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Kinde, MI USA
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Re: Persistent eye pain?
Reply #11 - Nov 1^st, 2012 at 9:00pm

"feels like someone is pulling at the back of my eye from my brain. I call those shadows. You know beasty is there....he's trying to break in....but he can't quite get a toehold!"

No better description Joe.
I know when his grip is slipping the cycle will end soon. Hoping everyone including myself feel him lift away soon.
BriBri

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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...

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ClusterHK CH.com Junior Offline Ouch! Posts: 41 Now in Sydney, Australia! Gender:	Re: Persistent eye pain? Reply #12 - Nov 1^st, 2012 at 11:33pm I get the persistent eye pain shadows as well and they're very annoying. I think the beast is trolling us. Is a big one about to hit? Should I use my limited supply of O₂ and medication to abort it now? Or should I wait until it gets real bad and risk being unable to abort it? Grrrr....
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moneymaker CH.com Junior Offline I Love CH.com! Posts: 25	Re: Persistent eye pain? Reply #13 - Nov 2^nd, 2012 at 8:13pm try to deal with it as maybe the beast is going away for awhile,i get the red eye and pressure and tearing of the eye and feel small temple and ear pain,if i ride it out it goes away in about a 1 hour,,,just hope like i am doing that this monster is going to hibernate for the winter now.
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wornwhite CH.com Newbie Offline I Love CH.com! Posts: 8 austin Gender:	Re: Persistent eye pain? Reply #14 - Nov 4^th, 2012 at 12:33pm I recently started with my 5th neurologist and have now been diagnosed with hemicrania continua instead of cluster headaches. No wonder my pain was/is never subsiding.
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moneymaker CH.com Junior Offline I Love CH.com! Posts: 25	Re: Persistent eye pain? Reply #15 - Nov 4^th, 2012 at 7:58pm wornwhite wrote on Nov 4^th, 2012 at 12:33pm: I recently started with my 5th neurologist and have now been diagnosed with hemicrania continua instead of cluster headaches. No wonder my pain was/is never subsiding. Are they treating you with indomethacin
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wornwhite CH.com Newbie Offline I Love CH.com! Posts: 8 austin Gender:	Re: Persistent eye pain? Reply #16 - Nov 11^th, 2012 at 9:10am Yes but after 3 weeks on it, the pain isn't subsiding. I'll just keep on keeping on. Trying to find something that breaks this pain cycle.
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