Ocular Migraine

We saw the optometrist. She said Anna's vision is terrible, and she is legally blind. Anna's vision is 20/400. Her normal vision is 20/30.

The optometrist left the room and called the lead neuro-op at The University of Minnesota. Because Anna's optic nerves are normal, they said this is not an emergency.

They made an appointment to see the neuro-op on Tuesday morning. We saw this doc last November, and Anna had a perfectly normal eye exam with him.

The optometrist thinks it is ocular migraine, but she said it should not last this long and this is way out of her league.

If anyone has any advice or knowledge, I'd sure appreciate it.

Thanks!

Cheryl

Cheryl, you'll probably get the gist of this, but Bullscheiss!!!!

If Anna's vision has changed from normal 20/30 to this, it is an emergency.

That is a major change (sorry, I don't mean to be inflammatory, but this is obvious).

I'm wondering if MR, or MRA would help to see if this is a change.

Optic nerve analysis involves visual field analysis and fluorocein angiogram.

I don't know if this is a change, or a new symptom.

I'd get in touch with her big neuros asap.

And, I am very sorry that you guys have to go through this!!!!

-mgb

Cheryl, How scary and frustrating that must be for boh of you. I have had an episode of Ocular migraine, my Dr. blamed it on Lyme disease. Mine was very short, only a few hours where I could not see much. I did have a CT scan which showed nothing.

From what I have read though Anna's case should be of high importance since it was so sudden and has gone on so long. Why are Dr.'s so blase until something really bad happens? Doctors need to listen to their patients!!!!!!!!! Sorry, my head is quite bad today and I am grouchy because I have 6 petsits and no help.
Hugs,
Cindy

The current situation...she had a terrible night. Sobbing in pain off and on. I know the drops in the eyes and lights in the eyes from the exam have made things worse.

My husband and I decided I should take her to our local ER and ask them to call her neurosurgeon in WI. I'm sure he would say she needs an LP.

But I can't get her up. She was screaming at me (very unlike her). She won't cooperate. I'm letting her sleep some more, and then I'll tackle it again. My husband was out of town, but he is on his way home and will be here within two hours.

I could almost describe her as being combative, if this keeps up.

Ugh!

Cheryl

Oh, Cheryl, I'm sorry. Praying for you.

She won't go to the ER--she refuses. I give up.

She is adamant her vision is better. She was able to read the captions of a magazine five feet away, and I know she couldn't do that yesterday. So that proves to me it better, but to what degree?

It is very hard to be the mother of a sick adult. I wouldn't wish this on anyone.

Thanks for your concern.

Cheryl

big hug! i know migs do affect vision and my sis goes blind in one eye for 3 days! hope you get some help!!

She can do finger pressure on places # 1 and keep the artery closed to see if the vision became better or not. If this is ocular migraine I,m sure that the vision will be back to normal.
But be sure that both STA branches were closed.
If she still feel pulsation on the front during the pressure this mean that the pressure is wrong.
In this case she has to do the finger pressure lower to stop the pulsation in the front, or she has to do additional pressure in place # 2 (frontal branch of the STA).
see photo page of this web site to know where to do the pressure:
www.alisultaneh.8m.com

sorry to hear cheryl....if her behavior has changed, that could be a sentinal sign something has gone wrong.

She is back to her old self tonight, and she is apologizing for her stubborn behavior. She said she didn't know what happened to her today.

She can read pretty clearly. So I have calmed down some.

The pain is still awful behind her eyes.

This was the most scary thing yet, I do believe. And I suppose it can come back. I'm giving her more Imitrex right now.

Cheryl

Cheryl, That is so worrisome. When do you have another Neuro appt. scheduled? You have probably mentioned it, but my head is still not cooperating. I hope it is soon, and someone has some answers.
Hugs,
Cindy

Tuesday is an appointment with the neuro-ophthalmologist. And we'll go from there.

Cheryl

Saw him today. He said her vision is good, and there's no pappiledema (swollen optic nerves). It may never happen again. He had no idea it was, but he said it was not ocular migraine. How doctors can disagree with each other.

We are seeing her neurosurgeon on Thursday.

Cheryl

Ocular migraine (or whatever it was!) seems to have disappeared, hopefully for good!

After six appointments in three states (!) during the past three weeks, we have a plan of action.

We will do nothing much in September

In early October (God willing), Anna will be admitted "inpatient" to "a well known HA clinic" in Chicago

There she will wean off opioids plus try (hopefully without adverse reactions), whatever is being done IV for chronic HA these days. We have very little hope for anything oral working at this point. But the IV stuff is definitely worth trying. I'm taking her there with high hopes something is going to help

If there is anything that can help IV, we have infusion centers at home to go to. But we have to find something that helps first! Thus the challenge. But I'm thinking very positive thoughts here.

Then Anna will undergo ICP monitoring with her neurosurgeon in Madison to rule out an intracranial pressure issue, if we can't conquer her HA pain in the HA clinic.

God willing, this is the plan.

Anna is willing, and that is very important.

And I just want to say that we have THE MOST AWESOME neurologist in Chicago (though he not associated with the well known HA clinic). I can't tell you how much I love him and his wonderful nurse. He is the best ever, and I'm so blessed to have found him. Any contact we have with him or his office has been great. Wonderful support. And our other doctors right now--just awesome. How I respect them and what they are trying to do for us.

Cheryl

Cheryl,

I am very interested in the outcome. I have had migraine that causes severe pain in the back of my eyes, but never causing bad vision. However, the pain portion sounds similar. It always changes my attitude also. I really want to be left alone when I have this type of pain. It gets so bad that I do not even want to think. Trying to answer questions is really painful.

Hal

How long will you be at the "renown headache clinic"? I'd love to come up and meet you for lunch or dinner. Perhaps other Rondians could join us. I know you won't have time for a lengthy visit, but you do have to eat, right?

When the neuro-ophthalmologist said he didn't know what happened to her vision for eleven days, I figured there wasn't going to be much of an answer. Just one of those weird brain things, I guess.

I'm thinking she will be in the hospital for two weeks plus? But I just don't know.

Would love to have visitors while we are there. For sure! It helps so much to get through it. Please come!

Her neurosurgeon said he prefers to do the ICP monitoring without opioids influencing the results. And he wants to see how her brain responds to not being on opioids for a time.

He and I thought the headache clinic would be the good way to go at this time. One good thing about the HA clinic is that there is access to other specialists there. It would be nice to get a diagnosis/treatment for her burning pain and treatment for her dysautonomia. And who knows what else.

I hope you have a productive appointment tomorrow, Char.

Thanks!

Cheryl