Hey all. I've come out of hiding once again because as always the beast will not kindly find his way out of my life. He really must have a thing for me because he just won't leave me alone.
Anywho, see that cute guy sitting with me on the left side of the page? The one over "The Angel of my Nightmare"? Yeah, that's my boyfriend James. He's a sweetheart and we've been together over eight months now. But the boy has got me scared and I'll tell you why.
Over the past few months I've noticed slight changes in that sweetheart of mine. We will be hanging out at the mall with friends or sitting around playing cards and I see him shake his head and rub his left eye. As time has progressed it's gotten worse. He started to complain of headaches behind the eye a lot but would always tell me it was nothing so, for what is probably too long, I let it go.
But this last month they really started to bother him and then a few weeks ago he lost all vision in his left eye. For me this sounds all too familiar. Since then he's been getting them about every other day and I'm not sure what to do.
He went to the doctor's and they say optical migraines. I've had migraines since I was 10 and these aren't anything like the typical sit-still-in-the-dark-quiet-leave-me-alone migraine. He can't sit still, blares music, tears at his eye, and holds me so tight I can't breathe and have to make him let me go because it hurts.
He has lost his vision at least 3 times today and it's so bad that he started to cry. This is a man who would rather die than to let anyone see him cry and there he was in front of me, our best friends, and his whole family, crying in pain. I know he's scared and I don't know how to help him. As much as I hate to admit it, I'm scared too. This isn't anything I've dealt with before.
I've tried to get him to start a headache journal but being the stubborn male he is, he doesn't want to admit that something is wrong. He really is my world and I hate to see him in so much pain. His little sisters are scared to even be near him because he swings out wildly, trying to smash at the demon in his head.
If anyone has any ideas, I could really use them. They could be optical migraines but it sure doesn’t seem like it. Someone tell me if I’m wrong. The very last thing I need in my life, (as much as I love all of you,) is yet another cluster head. Thanks.

~Felicia.

One word: Neurologist

I have never heard of someone going blind from a CH.

Paul

It could be optical migraines - it could also be basilar arterial migraine. I'm sorry but my "standard" advice holds here too. You need an expert opinion and that means HA specialist neuro as the wrong diagnosis could be very dangerous if the wrong meds are given.

I don't want to second guess - it could be any one of a number of ha variants - you DO need to get him to a proper specialist though asap please and if you need help with that I'll lend my size threes!!  :-*

I'm going to echo the everyone else Felicia. It may just be optical migrains, it may be CH, it may be something a lot more sinister. Being a young man, I suspect he downplayed all his syptoms when he went to the doctor. That's what I used to do. Hate to sound like some whiney little wimp who can't handle a little headache. I find it hard to believe they would have been so quick to make a diagnsosis if they had the information you just provided us.

Us men are great for lifting heavy objects and fixing cars, we're not always good at this "asking for help" stuff.....may take a little more forceful intervention on your part. Good luck.

Joe

From allaboutvision.com:

Ocular Migraine Symptoms

People with ocular migraines can have a variety of visual symptoms. Typically you will see a small, enlarging blind spot (scotoma) in your central vision with bright, flickering lights (scintillations) or a shimmering zig-zag line (metamorphopsia) inside the blind spot. The blind spot usually enlarges and may move across your field of vision. This entire migraine phenomenon may end in only a few minutes, but usually lasts as long as about 20-30 minutes.

Generally, ocular migraines are considered harmless. Usually they are painless, cause no permanent visual or brain damage and do not require treatment.

Still, always consult your eye doctor when you have unusual vision symptoms, because it's possible that you have another condition requiring treatment, such as a detached retina, which should be checked out immediately.

Thank you all so much, expecially the definition is helpful. I've asked him to describe it to me several times and it usually runs along these lines:
*hurts like a b*tch
*left eye goes completely dark for 20-30 minutes
*feels like the front of his head is going to explode
*always in the left eye
And this is my favorite of all. The doctor he went to told him that they will continue to get worse, he will have them his whole life, and said there is nothing they can do about it. Really? You're telling a 17 year old kid this? No wonder he's scared.
His parents are both on disability trying to raise 4 kids so getting them to take him to the doctor's is almost completely out of the question unless he's nearly dying. I hate that I can't help him. Last night after it finally subsided we were sitting outside and he asked me if I was going to leave him because of these damn things. At that point, seeing the fear and pain in his face, my heart broke.
Thanks again and if any one else has any ideas please let me know. Whatever it is that's in his head has got my heart in it's hand and is trying to crush it.

~Felicia.

If he's been to the doctor about it, and the doctor gave him a prognosis, then he must certainly have a diagnosis. See if you can find out what it is that he has and then bring the name of it back here. I'm sure we can find all sorts of stuff for you and him to read.

I know it is difficult for him to get to a Dr with both parents on disability, but that being the case Medicaid should pick up for him to see a specialist in this case.  The hard part may be in trying to find a Dr that will accept Medicaid.  I'm with the others on this.  He needs to be seen by someone who knows more than the average bear.

Jerry

At least he has someone who understands behind him.  thanks for being there!