My son is 11 yrs. old and he has had CH since he was a baby but was  officially diagnosed in the last few years. He gets them mostly in his left eye and it is the most horrifying thing I have ever gone through. He went to the doctor today and they said he had vision loss in his left eye. Does anyone know if this may be related to his CH.

I am so sorry to hear that your little child suffers CH. It must be just horrible to see this little child go through this.  My son started with migraine in the 6th grade and progressed to CH at age 17.

What meds is your doctor treating with?  Is this a neurologist?

In my 9 years on this board, I have never heard of vision loss related to CH.

Well  he has had  CH since he was an  infant  but he sees a Neuro and a headache clinic at Texas Children's that specializes in CH but he is only 1 of like 4 children  in the clinic that have CH being that it is so unusual in kids his age well at least that have been diagnosed correctly. I have fought for years telling the doctor it was not migranes these were way worse and only lasted for 10 to 30 min. His only attack pattern has been in his left eye and never varied so we are going to TCH to see and Opthamologist to find out for sure.  Thank You for responding it is so nice to have someone to talk to that sees the real trauma behind this horrible thing CH. Many people do not understand why he can't just rin and bear it when it comes on. It really stinks.

He is being treated with Imitrex acute spray right now we tried Zomig but no results.

Have you tried oxygen with your son?  I think it's wonderful that you were able to find a doctor.  Would you mind sharing who his treating physician is?  I think there is a list on the OUCH site (or this site) where they try to list doctors and where they are located.

LeLimey (Helen) has a little boy who has clusters.  She's been a bit under the weather lately, so she hasn't felt like posting.

Carolyn~aka~deltadarlin

Yes, My vision gets greatly reduced during an attack.  I was in my eye drs chair during a ch for an annual exam and no matter what he did to try to correct my vision with the different lenses he could not and my vision was greatly affected.  He sent me to a specialist who determined that during my non ch times my vision was a ok.  But during my ch attacks there was nothing that could be done to correct the lousy vision I was temporarily experiencing.

It is common to lose sight in your eye during a Migraine.  I don't know about during a Cluster. I lose sight in my eye while little prizms flash.  Its kind of scarey and I can't go anywhere when it happens.  I have been trapped at the store once, and in my car another time... I could not drive until it passed...

I think you should definately tell his doctor about this problem and follow up with an eye doctor.

Ree

I am so lucky to have ocular migraines, along with CH and migraine.  The ocular migraine totally affects the retinal nerves.  I can go partially blind for about 20-30 minutes, see lightning streaks or flashing lights.  The main cause for the ocular stuff is pure, raw stress.  So, I believe (and it is just an opinion) that yes, temporary blindness can happen with CH just due to the stress of the headache.  Especially in a child!  I have had them since I was 10 and I remember firmly believing I was going to die.  The stress is causes a child is a helluva lot worse than it causes us as adults.  Talk to the doctor about the ocular issues and make sure nothing else is going on. Then mention other things to him.

6Kidcazy......are you still there?

Man, theres nothing more to hate then when someone shows up for help for a kid and then never returns.......I hate that! >:(

wrote on Jul 11^th, 2008 at 11:22pm:

Man, theres nothing more to hate then when someone shows up for help for a kid and then never returns.......I hate that! >:(

 Yep.  Makes a feller wonder bout posers.

   Potter

come on, guys.  Many people just pop in on us for a short time.  
some sincere people only post once and then forget all about us. That doesn't make them posers.  I did email 6kids recently but haven't heard back.  I am hoping that means all is going better and their family has gotten the help it needs.

Charlotte

6kidcrazy wrote on May 1^st, 2008 at 1:33pm:

My son is 11 yrs. old and he has had CH since he was a baby but was  officially diagnosed in the last few years. He gets them mostly in his left eye and it is the most horrifying thing I have ever gone through. He went to the doctor today and they said he had vision loss in his left eye. Does anyone know if this may be related to his CH.

i started to have ch when i was about 11. i am episodic. to this day according to the department of transportation i still have 20/20 vision. i wish i had this website back then, or even the internet for that matter. mom, still to this day keeps a pretty good poker face on when i am having those attacks. i don't know if i could play it off that cool. i still get a little teary eyed when i see tony's youtube video. :'(

Hi, I'm a fifteen year old girl. I have chronic ch. When I get a headache, it hurts behind my left eye, but I do lose vision in my right eye.