I am new here and new to MAV

Hi, I am new here and new to MAV. I have not been officially diagnosed, but symptoms seem to point to MAV. I have a great primary care doc and have seen an ENT doc. I did the full battery of vestibular tests at Mass Eye & Ear on 8/17, have an appt with a neurologist 8/24 and ophthalmologist 9/1.

This all started about 8 weeks ago on a Monday with what my PCP diagnosed as an enterovirus (gastrointestinal) that lasted 4 or 5 days and I felt well enough finally to return to work after the weekend. Monday came and I woke up with really bad vertigo and nausea. I couldn’t do much of anything for a week and a half. The vertigo finally started to decrease and then I started getting migraine symptoms in addition to the vertigo (auras, visual disturbances, light sensitivity, certain patterns made dizziness worse and some headsches). That has now been going on for 5 weeks. I am on 40mg Amitripryline amd Sumatriptan. Some days are better than others, but I always have vertigo at some level along with migraine symptoms. I haven’t been able to return to work and am not currently able to work. I am a project manager and sit at a computer all day at work. I can’t look at a computer screen longer than 20-30 minutes before I get more dizzy and the migraine headache starts.

I am slowly figuring out what my triggers are and trying to find coping mechanisms… I have only read through a few threads on this forum and have already found helpful info (the computer screen thread is great). I just wanted to introduce myself.

I am sorry to hear about your problems. You have come to the right place. I have found this site to be extremely supportive and helpful. You are getting good help quickly from your physicians which is lucky for you. It took me three years to find the right doctor. An important book to read is “Healing Your Headaches 1-2-3” by David Buchholz. Also, on this site, the article “Vestibular Migraine Survival Guide 2014” is a wonderful explanation and summary of the problem. I have come up with a food/marketing guide if you need one. Following the low tyramine headache diet is essential. Good luck to you.

Thank you. Diet is probably going to be a hard thing for me. I grew up in a household where meals consisted of meat, bread, and potatoes and it carried into my adult life. I guess I am going to have to find ways to eat better.

Hi Pandora-

I had very similar symptoms to yours and I also go to Mass Eye & Ear for treatment. Oddly, I’m a project manager, too! I have been dealing with motion intolerance my whole life but had a triggering event similar to yours about 5 years ago. I would also recommend seeing an Otoneurologist. They specialize in dizziness, disequilibrium, but also migraines.

Very sorry that you are dealing with this and it’s very scary and confusing, but I’ve found some great information on here already. I hope you do as well.

Hi there. Hang in there. You’re lucky. I’m an attorney & it took me almost 2 years to get properly diagnosed because I was seeing ENT’s. It sounds like you’re in good hands. I have MAV but have never had a migraine because I’m told mine are silent. My big problem is eye tracking abnormalities which were diagnosed by an ENT who did a VNG which is not a fun test. Basically I have issues with patterns too & the computer screen is really tough at times but I’m on Topomax now & it’s a million times better. Definitely sounds like what you have is neurological because it’s similar to my symptoms. One of my triggers is the fluorescent lighting in my office. It actually helped me to have some of the bulbs taken out of the fixtures in my office. Many of us MAV folks have super sensitive brains so that might be one of your triggers if you’re in an office. I’ve never adjusted my diet so hang in there. It will get better! (Hugs)

Sorry for the delayed response. It sounds like we have a lot in common. I still haven’t received the results of the vestibular testing, but I saw the neurologist and had an MRI done, for which I am still waiting on a report. The neurologist thinks this is viral still, since that is how it started. She had some blood tests done, all of which are normal, and said to avoid the things that are triggering me. Not very helpful.

I found out last Friday that they replaced me at my job, which doesn’t surprise me since I was a contractor. My short term disability was extended to September 17th and if I am ready to try and go back to work by then, I will be able to get unemployment until I find a new job. I just need to figure out health insurance, whether I fork out the ridiculous COBRA amount or try and find something else that is more affordable. Fun fun fun.

I had a fairly sensitive brain before this all started. I’m kind of surprised I haven’t had migraines prior to now. I had them when I was 19, but I had gotten married at 19 and when I got divorced a few years later, they went away. When I think back, I think I may have had a few between then and now, but nothing like what I am experiencing now. I guess I will need to learn how to deal with an even more sensitive brain.