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Cluster Headache Help and Support >> Cluster Headache Specific >> Persistent eye pain?
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Message started by wornwhite on Oct 16th, 2012 at 10:31am

Title: Persistent eye pain?
Post by wornwhite on Oct 16th, 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. 

Title: Re: Persistent eye pain?
Post by Bob Johnson on Oct 16th, 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.

Title: Re: Persistent eye pain?
Post by wornwhite on Oct 16th, 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.

Title: Re: Persistent eye pain?
Post by Guiseppi on Oct 16th, 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

Title: Re: Persistent eye pain?
Post by wornwhite on Oct 16th, 2012 at 8:53pm
yesss. that makes more sense. feels like someone is pulling at the back of my eye from my brain.

Title: Re: Persistent eye pain?
Post by Guiseppi on Oct 16th, 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

Title: Re: Persistent eye pain?
Post by wimsey1 on Oct 17th, 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

Title: Re: Persistent eye pain?
Post by lydia nichole on Oct 17th, 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.

Title: Re: Persistent eye pain?
Post by lydia nichole on Oct 17th, 2012 at 4:06pm
plus there pare no side effect really with the lidocaine (atleast for me) unless you are allergic to it.

Title: Re: Persistent eye pain?
Post by moneymaker on Nov 1st, 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.

Title: Re: Persistent eye pain?
Post by brian trudeau on Nov 1st, 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

Title: Re: Persistent eye pain?
Post by brian trudeau on Nov 1st, 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

Title: Re: Persistent eye pain?
Post by ClusterHK on Nov 1st, 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....

Title: Re: Persistent eye pain?
Post by moneymaker on Nov 2nd, 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.

Title: Re: Persistent eye pain?
Post by wornwhite on Nov 4th, 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.

Title: Re: Persistent eye pain?
Post by moneymaker on Nov 4th, 2012 at 7:58pm

wornwhite wrote on Nov 4th, 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

Title: Re: Persistent eye pain?
Post by wornwhite on Nov 11th, 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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