Ocular Migraines

Ocular migraines, ever heard of them? I hadn’t either. Until today.

I signed off of here earlier last night because I got a headache that just was not going away and I was starting to get dizzy from focusing on my laptop. I watched some TV (Biggest Loser), took a bath, and went to bed. I woke up this morning with a lesser version of the headache.

About an hour after waking up, I started getting these circles that would flash and stream across my vision and out into the periphery. I checked each eye to see if only one of them was doing it but they were both doing it.

Then, the flashes started getting worse and worse. At first I only got off my laptop, then I shut off the TV, closed the blinds and started at myself in the mirror trying to figure out what was going on. I didn’t have any eye trauma recently and my headache surely couldn’t be the cause of this. Or so I thought.

I started doubting my ability to care for Cakes and the implications of this vision thing so I called my husband and asked him to come home. He told me to schedule an appointment with our primary care doctor and he’d take me when he got home. From the time the flashes started and my vision started blurring until they ended it was between 15 and 20 minutes.

I went to the PCP who said she thought I was experiencing ocular migraines. She called me in a prescription of Imitrex and gave me orders to see have an ultrasound done of my carotid artery, an MRI to check for any vascular problems or tumors, and a referral for an ophthalmologist exam. Since my husband was already working from home for the day I decided to try and get everything scheduled for today if it was possible.

I managed to schedule the ultrasound and MRI appointments back to back for 45 minutes from when I called. On my way to the appointment, the scheduling office called to update me saying they hadn’t received a pre-authorization from my insurance yet for the MRI but they were still working on it and to keep my appointment. I made it to the office on time (they have you arrive 30 minutes early for paperwork that takes 5 minutes, but isn’t that how it always is?) and while filling out the paperwork someone from the billing department came over to tell me they hadn’t received the pre-auth yet and I’d need to reschedule the MRI. I told her about the call from scheduling on the way over and asked if there was anything I could do to speed up the process. She suggested calling my doctor’s office (the one requesting the exam) and following up with them. When I called, the receptionist said they were already working on it but the doctor was busy and they’d have to get back to me.

The ultrasound went very smoothly and the tech didn’t see any problems there. She also told me that she had two ocular migraines in the past as well and they scared her just as much. Before taking me back for the MRI, she checked to see if the pre-auth had been received yet and it hadn’t so I was asked to reschedule. I rescheduled for Friday evening when my husband would be off work but I’d still have to fight rush hour (the alternative was tomorrow night at 8:30 – no thanks) and then headed home.

On my way home I decided there was still a couple of business hours left in the day and I’d try scheduling my ophthalmologist appointment. I scheduled my appointment but when getting directions found out the doctor had not given me the number of the referral we talked about that was only 3 miles away, but instead gave me one that was 20-something miles away. I went ahead and made the appointment but was getting ready to call my doctor’s office again when the nurse called me. She said they had received the pre-auth and wanted to know when my appointment was and where to send it. I told her the appointment had to be rescheduled because it should have started 20 minutes ago and gave her the updated information. I also told her about the opthamologist office and asked for the referral that I was supposed to get.

When I got home I talked to my husband and decided that regardless of when the doctor’s office called back, I wasn’t going to go to the referral that was so far away. I called and canceled (to a not so thrilled receptionist, even though she knew I thought her office was located elsewhere) with the opthamologist’s office and as I was hanging up, the nurse called back again. She gave me the correct information and said she was faxing the referrals for the MRI then. Apparently this office does not have a sense of urgency (another reason we have considered switching PCPs). The ophthalmologist’s office asked me to come right over for the exam. Even though I had LASIK, since I’m getting older and have been pregnant there is the possibility that my eyesight has changed and I may need contacts or glasses again in the future. Although I was there for an hour (including vision and glaucoma testing, as well as pupil dilation) I got the all clear that my eyes were looking just fine and the opinion that I was having ocular migraines and did not need to be seen again (or in her opinion require an MRI).

The MRI. 

It took over a month to get my MRI. The day I went to the rescheduled MRI appointment, we had a light dusting of snow and their office shut down. Only they didn’t call and let me know they weren’t open. I got halfway there and thought to call to make sure they were open only to get their voicemail. My husband looked on their website and apparently all offices were closed because of the severe weather. The appointment was on a Friday and they never called again that Monday to reschedule.

That Wednesday, my doctor’s office called telling me that all of the other specialist’s reports and lab work was received and everything was indicating ocular migraines. She asked when my appointment was and I recounted the scheduling mishap. I asked if all indications were suggesting ocular migraines if the MRI was even necessary. The nurse started to say something about nothing hurting to just get the MRI done (meaning, I’m guessing she didn’t want to have to ask). I explained we’re on an HDHP (high deductible health plan) so we have to pay 100% up front up to a $5,000 family deductible before the insurance starts covering 100%. My carotid artery ultrasound was $450 so I’m guessing at least double that. At least.

A week later, I still hadn’t heard back. I called to follow up. I don’t want to blow off an MRI if it’s really necessary. I asked what the doctor said and she repeated everything I already knew. I asked if the doctor still thought the MRI was necessary and she goes I don’t see anything in your chart, it looks like I forgot to give her the message. (Seriously?!)  It took her until the following Monday to call me back saying I should still schedule the MRI. This was last week when my husband was out of town so I couldn’t do it right away. She reminded me that pre-auths are good for 30 days and I would need to go before then so she didn’t need to call in another one. I called my insurance and guess what? I don’t need a pre-auth for an MRI and could have gotten it done the day of my first appointment.

This past Tuesday, I finally went in for the MRI. I scheduled a 6:30a (ugh) appointment so my husband could get into work as soon as possible. I was somewhat prepared for what I’d experience since I watch Grey’s Anatomy and House but it’s still different when it’s you. I was sure what completely still meant so I was pretty crimped up (they had my legs elevated in some pillow device) by the end. The MRI was ordered be done with and without contrast. With contrast involves injecting a contrast agent that appears as different colors on the MRI (it gave me dizzy and gave me a headache). The tech couldn’t tell me anything but said I should hear from my doctor in a day or two. In my head I was thinking, no I won’t and not just based on this experience either. My husband had an ultrasound in October and I had to call the office a week later to find out the results (and then educate them on drug side effects, but that’s a whole other story). Surprisingly enough, the nurse called yesterday to say that the MRI was fine and my brain looked normal and she (again) let me know the diagnosis was ocular migraines. I have to tell you this was such a relief. I had built it up in my head that something was wrong but am so relieved I’m fine.

Update: I went back to the doctor Tuesday to be seen about my headaches. They’ve been recurring since the beginning of the year and for the life of me, I can’t figure out what’s triggering them. I don’t think I’ve had any other migraines aside from the occular one but when I took an Imitrex, it was ineffective.)  I ended up just going to the same family doctor I’ve been going through even though I have issues with her since she already had my MRI and if I went someplace new they might try to order a new one and I just don’t have the money for that. The results of my coronary artery ultrasound were normal (which I knew) and that based on that, the blood work they did, and the ophthalmologists report – I experienced an ocular migraine.

The doctor didn’t give me a diagnosis but said that headaches are caused by three things – stress, stress, and stress. Not exactly helpful. Since we’re trying to get pregnant she didn’t want to put me on anything that wasn’t safe in pregnancy and suggested I started magnesium oxide 500mg, twice a day. She said there were other things she could prescribe but none are safe in pregnancy (which is pretty much crap since my mom who has been an OB nurse for 35 years gave me some suggestions). So I’m going to try this for now. If the magnesium doesn’t work, she wants me to see a neurologist (who I’m sure would order another expensive battery of tests that will find nothing.)

I’ve also been wearing my mouth guard again at night. It’s only been two days, but each day gets a little better. I still feel sore at my temples (I think I suffer from chronic tension headaches) but overall things are much more bearable now than they were a few days ago.