I’m Alice, and I have had MAV for a little over three years now.
It all started shortly after my 21st birthday. Before this, I was pretty much a healthy, normal college student. I was at my boyfriend’s (now husband) apartment one day, which was right next to my apartment, and I sat up quickly after laying down. After a couple minutes, I started to feel kinda funny, but I didn’t think much of it, and since he had an event to go to that afternoon, I went back to my apartment. All of my roommates were gone when I got back. I went into the bathroom, and really started feeling dizzy. I walked out to go back to his apartment for help, but I was literally slamming into the walls, I was so dizzy. I fell onto the floor and reached for the front door handle, but I couldn’t reach it, the room was spinning so fast. I was practically trying to grip onto the carpet, I thought I was going to fall off the earth. I was all alone, and I thought I was dying. It was the most scary experience of my entire life (I’m starting to cry a little now just thinking about it).
Finally I was able to reach the door and I pretty much crawled over to my boyfriend’s apartment. He took me to the ER where they gave me some medicine to calm me down (btw, the ER is where I met my future mother-in-law, who was at campus for his awards event…nice way to meet her, right?). Over the next couple of weeks I would get BPPV even from the slightest head movements. I couldn’t go to class, I had to delay my final exams. The doctors thought I might have had an inner ear infection, so I was put on some medications for that.
After a few weeks, I was feeling alright again for the most part, although I didn’t move my head around quickly. A few months later, though, is when the real daily dizziness started up. I have done many tests, and saw a specialist in Chicago (I used to live near there), who said I had MAV, but this diagnosis was very confusing to me, since I had never had what I thought to be a “traditional” migraine (headache, sound and light sensitivity, etc.). He wanted to put me on topamax, and I only took it once, since I was so scared about the side effects, and I didn’t really believe my diagnosis back then. The doctor never really explained to me what was going on in my head, or suggested a support group or anything. I really wish I had been given a better explanation back then (instead of just being put on a med without telling me what it could do for me), and shown that I am not alone in how I’ve been feeling.
For the past almost three years, I have felt sick pretty much every day. I do not do the physical therapy for my BPPV, but I don’t get up or lay down quickly, and I have been able to pretty much control it that way (I haven’t had the true spinning episode in a long time, thank goodness). I do, however, get the rocking sensation when I am still (for some reason it’s better when I am walking, but worse when I sit, stand still, or lie in bed); it is like I rock back and forth with every heart beat. I often feel like the floor is dropping beneath me, and that my body is very heavy. Everything seems like it is moving or floating. When I get out of a car after long trips, I feel like I am on a boat. I do not like to drive myself. I don’t like being in small or crowded space, and usually feel better outside in open spaces. My body is often in pain because of my lack of movement and exercise. Because my body has to work so hard at being balanced, I am very tired and sleep a lot at night, and I don’t have much energy to do things. Several months after my dizziness began, I was also diagnosed with an overactive thyroid, and have since had my thyroid almost fully killed off with a radioactive iodine pill (I am now on medication to control my hypothyroid). I have developed panic attacks which come out of nowhere (I even get them in my sleep, and woke up with one so bad once that I went to the ER, since my husband wasn’t home at the time to calm me down). I get depressed and very anxious about my health. Because I felt just a little funny before my first major vertigo attack happened, my body often freaks out whenever I feel just a little off, thinking that something horrible like that is going to happen to me again. I used to be active…traveling around the world, smart and driven….but now I feel like it’s so hard to do anything. The only job I’ve held since I finished college 2.5 years ago was a 3 week temp job this spring. I often hate making plans to do anything, because I don’t know how I’ll be feeling. Going out and doing something takes so much energy anyway, that sometimes I don’t feel like it’s worth it. I usually can’t even sit at a table in a restaurant without feeling horrible. Anyone else feel like this?
The only thing that has helped convince me lately that this is indeed MAV, is the fluorescent light sensitivity I have developed (I hate walking into most stores, or office buildings), and reading about other people’s experiences with MAV.
My saving grace through this experience has been my husband. We met only a few months before this started up, and he has stood by me through it all. We got married this January, and I am so thankful that I didn’t feel too bad on our wedding day. Without him in my life, I would probably be in a very dark place by now.
I’ve started the migraine diet this week, to see if it will help in the long run, but I’m a little unsure if it will. It’s very hard for me to pinpoint food triggers too, since I usually don’t have the headaches to go along with them (just the varying degrees of dizziness). Last week I was eating up all the foods in the house that are possible triggers, to get rid of them, and I felt better last week than I have for months, so I’m a bit skeptical. I developed a love for cooking after my vertigo began, since I am stuck inside all the time, and it just seems unfair that this migraine diet is going to take part of that away too!
I have a bunch of questions for you all:
Recently one of my doctors here suggested Zoloft and going to therapy for my panic attacks. Has anyone tried either of these, and have they been helpful at all? I am so wary about going on drugs (I always think I’ll get every side effect), which is why I am trying the migraine diet first.
Does anyone else had MAV without the headaches? I usually only get headaches that are weather-related, and I can sleep them off (thank goodness).
Does anyone know if there is a connection between either MAV and thyroid disease, or MAV and taking the birth control pill? As I said, I developed my thyroid disease around the same time the MAV occurred, but even though my thyroid has been fixed, I still feel dizzy. I also started the birth control pill a couple months before my very first vertigo attack. I went off it once for a little while, but I’ve still been on it for the past couple years (I went on it because I wasn’t getting my period without it). I plan to go off of it after being on the diet for a few months, if I am still not feeling better.
Has anyone else gotten pregnant after their MAV occurred? There are some days when I want to start a family, but on my bad days I worry so much about how sick I’d feel during a pregnancy, and if my body could handle it (or if I could handle raising a child).
Sorry for the length of this post!
Anyway, I look forward to getting to know you all, and hopefully getting better with you all!