Vision trouble with headaches?

I have always had very blurred vision when I get a migraine, my mom and my grandfather get that too, though theirs are far worse than mine, we all have some kind of genetic, substance triggered migraines. My grandfather's triggers include cultured dairy and cheese, and I know my moms are triggered by artificial sweetener and also certain herbs. I've only just had my first one about four years ago, and have only had five since, so mine aren't frequent enough yet to see a neurologist and I don't know what my triggers are, but my diet is already very limited from gastric bypass, so I'm not sure if I will get them as frequently as my mom or grandfather.

I know the frequency and atuff is progressive, and they think they've linked part of the genetic problem with keretakonis (I think I spelled that right) which is an eye problem that we all have, and will eventually require me to wear hard contact lenses like they do.

I.guess that was a bit more than an answer lol, but yes, every migraine I've had, it's like trying to look through a not so clear shower curtain. And the pain is intense, I have had to lock myself in a dark room for a week with three of them. Each one is worse than the last.

I hope it's just a migraine and not something more serious like you implied, that's had to be awful what you have gone through already, I hope you don't have to go through more. Take care, and let us know what the doctor says.

Thanks so much, Matt. You always give such good detailed answerers.
Sorry for what you have to go thru as well. I guess you could call it a migraine but since mine is triggered by the brain tumors I don't know what else to call it- a migraine, headache, ect....

Anyways, you described it perfectly when you said its like looking thru a not so clear shower curtain. Because Of all the nerve damage in my face, my eyes get dry a lot. But when this happens they get blurry. My glasses and eye drops will help and it always clears up in a few days. What I am experiencing right now is different.

Hopefully Tina will see this post. Thanks again Matt you have been very helpful like always.

Tina I am so glad the Actiq is working for you. I am glad I was able to help and I was all prepared to send you some vouchers for the Fentora if you had to go that route.

My dad is driving me to the PMD office right now to get my script so I don't have to go tomorrow. My mom called them this morning and they were so nice like always said let us ask the doctor and we will call you back. They never called back but my mom called back at 1pm and they said it was ready to come get it. I am deaf from my brain tumors and thank God everyday for wonderful parents. No way I could drive right now with my vision like this.

Oliver is 2 1/2 and he must be friends with your twins because he also thinks everytime I get on the computer it means mess with mommy time! Haha

Maryann

Hey Suzane.

I am 29 will be 30 in September. I guess I made myself sound pretty young when I said "my mom and dad" haha but they are wonderful parents and help me a lot. Me and my mom live together. My mom and dad are divorced but they are like best friends. We eat out together and spend holidays together.

I was born with Neurofibromatosis type 2. But wasn't diagnosed till age 9 when a huge tumor literally grew out the side of my right temple. I almost died. The tumor ate my skull on the right side so thy had to take bone out from the left side to replace on the right. And pretty much pulled my skin and face off. And I was only 9 years old. The worst I went thru was when I was 16 I had two tumors on my brain stem (left and right side) and 8th nerve which is the hearing nerve. That surgery was so risky they had to preform each a year apart. Each one was 18 hours long. I lost my hearing because of those.
I recently had surgery im March and May to remove more brain tumors. Those were easier surgeries because of the location. But my doctor did have to shave all my long blonde hair off. Ugh!

NF tumors are very rarely ever cancer. They can be, but almost always never cancer and they are very slow growing.

My spine is also covered in tumors but those don't cause me much pain. The pain is mainly in my head and skull bone.

Feel free to ask me anything you like. Most people have never even heard of NF so I enjoy talking about it. Doctors use to think NF and the Elephant's Man disease were related because NF type 1 can causes tumors to grow on the outside of the skin. But I don't think they think that anymore but they use to think the two were related.

Maryann

Thank you for sharing your story Maryann. That's quite a lot to deal with but you seem to be a strong person and doing quite fine. No more what age we are, there is nothing like the love and support from our parents. I am glad you have that help. Sorry if you have to repeat, i have memory problems, but do you have a child? can't remember if you said that. Do you lip read or use signing. I have a friend I've met while camping who is deaf and boy oh boy can she leap read. It's amazing.
I hope your tumours will slow down in growth and that you don't need too many more surgeries. Hope the ones on your spine don't become a concern for you.
It's great chatting with you.
Hope you keep posting with us.

Take care
Suzane