Update on my condition

Hi everyone. Thought I would share a bit of an update on where I am with everything right now, and how I mysteriously got here. As some of you know, and as many probably don’t, I had my MAV crash back in December '07, out of the blue, during a stressful time in my life, but not a very busy one. I have since found out that when my mind has too much time to wander, and I am not busy enough for my day, I get myself into some trouble mentally by creating myself anxiety, stress, and other problems that actually don’t exist.

For the first several months, things just went from bad to worse. I started out with just the 24/7 dizziness and with mine, not only did I feel like I was moving back and forth, but the environment was constantly moving around as well. The light sensitivity hit 24/7 and a variety of other 24/7 symptoms. However, the motion sickness hit a few months later, and so did the visual sensitivity until it was getting to the point where I was in danger of not being able to drive. I was starting to get sick while driving. I was going to downhill fast. I had every test imaginable, all to no avail, and every day was just a daily battle to get out of bed. In fact, for the first 2 months of this, I barely got out of bed at all. I became agoraphobic, I became even more fearful and worrisome than I already was, and things just got worse. I tried all sorts of medications that mostly made me worse. I would get attacks on top of my 24/7 dizziness that would send me right to the floor. I would get these pretty much daily. All the while, I suspected the worst, my world was shutting down, and while others were talking about what seemed like unimportant daily events, I was struggling to survive it seemed.

The interesting thing is, I was diagnosed with MAV pretty quickly into all this, but it didn’t seem possible that this was the cause so I pretty much ignored the diagnoses. But after several months of getting worse, I was given topamax and decided to give it a try. I had my first breakthough at 12.5mg. All the feelings of rocking stopped for the first time in months. However, that is the only benefit I noted upfront. After this, the medication didn’t seem to have any noticeable effect. I believe that the topamax has worked, but it took an additional 4 months to work. Only in the past month or so has it given me its full power. Still, up until this point, and all through the summer, I had no idea that the medication was going to work, so I tried a different approach along side the topamax. I decided to give in, and let the condition go. I came to the conclusion, after speaking to some of the wonderful people on this board, as well as many many doctors, that once this condition hits, there is a good chance that you are dealing with it to some capacity for life. However, it can be controlled. I felt that since my crash was related to anxiety, that I would try letting that go as best as I could. So I started leaving the house again. Even though I was agoraphobic, I went on a vacation a few hours away, without knowing where the local hospital was. I didn’t bring my blood pressure cuff, or my blood sugar monitor. I stopped checking my heart rate every hour lol. One day I was out, looking at printers in a store, and for the first time in 9 months, I forgot I had MAV. It was strange. Of course it dawned on me again that I had it, but for the first time, I could actually forget, and I felt pretty “ok”. So I kept up this pattern through the summer. I went out the mall, the movies, out with friends, etc. However, I also got to bed by 11pm every night and got my full 10 hours in. I stayed on the migraine diet. I took my topamax faithfully. In other words, I went on with my life, but followed the great adivce of what is known about MAV at the same time, but without obsessing about it. Perhaps some of you are able to do this without obsessing, but I was incapable. After 2 months of not obsessing, I was up to 80-90% improvement. I was out doing manual labor, building things, running around again, and I wasn’t suffering for it the next day. I think the topamax was kicking in at the same time.

Today, 9 months later, I am operating at 80-90% pretty much every day, and I haven’t had any of the extra dizziness “attacks” in 4 months. June was the last time. my only residual symptoms are:

  1. the world is still slightly shifting and moving but I can forget
  2. I have some residual light sensitivity but not every day
  3. I have some residual visual sensitivity but not every day

I think that’s about it. I am far more functional than I was. I don’t know what the future may bring. However, I DO know that it is possible to live with MAV and live a semi-normal to normal life. I am doing it. I watch what I eat every single day, I never eat a migraine trigger food, I get my sleep every night, and I always stay on my meds. I am even considering one more med to get me to 100% but I am really doing exceedingly well. And I remember a time when I could barely get out of bed, or if I DID get out of bed, I would feel like someone is shoving me to the floor. It’s amazing. I got frustrated reading success stories from other people because I never thought I would be one of them. Now I have mine. Even if I relapse, I know it will never be to the degree at which I started. I have actually had small relapses throughout this period, but for a few extra days I rest up, and I am back to normal. I can live with that. Thanks to everyone for their support. I am not going anywhere and I still read the board every day. Oh, I can actually read!!! lol. Some of you know that I don’t read the board much because the words jump. They don’t jump anymore! I am thrilled to be alive, and I am glad to be where I am. Still hoping for that additional 10-20% but I honestly cannot complain. Thanks to all, and for those who are still suffering, I am living proof that it gets better, and so are the wonderful people here who have also recovered or who have gained significant improvement. Thanks to all!

Boslee

That’s great!!! :smiley:
What’s your current Topa dosage?

Interestingly enough, my current dosage is only half of the recommended dosage. It’s 50mg. And believe me, I feel it, because I am not at 100%. If I could go to the 100mg, I believe I would be at 100%. But it induces insane fatigue and asthma. But 50mg has done wonders for me after 4 1/2 months, and I am holding strong on this. I really pray the topamax holds. I certainly could be doing even better, but if a doctor said to me, “look, this is the best you can expect”, well, I can live this way. Really, I can do it. But I do not want to go back to where I was. That was horrible. The topamax has brought me to a new level. Either that, or time. Maybe both. Certainly I’m not perfect, and there are days (mostly where I don’t have as much to do) where I think about it more, but those obsessive days are largely behind me now. As long as the Topamax continues to hold me where I am, I can live my life as it currently stands and put MAV behind me, treating it like any other long-standing medical condition like arthritis, osteoporosis, or heart disease. You live your life, but you do what you must to keep it at bay, instead of being controlled by it on a daily basis. I WAS controlled on a daily basis. Now IT is mostly under control. I feel so much better :slight_smile:

Boslee

That’s good news Bosley. I hope to keep hearing from you on the board. :slight_smile:

Brian

I’m so happy for you Bos :mrgreen: Good for you kiddo!

Heather

Thanks for the comments everyone. I also find that sleeping 10 hours every night has also made a huge difference. I just got over a head cold, and even the head cold had absolutely no effect on the condition this time around. First time in 9 months. Usually, the MAV either gets much worse, or much much better oddly enough. This time around, it had no effect. It was nice to have no change.

Boslee

Bos,

Great to hear that you’re finally getting somewhere with all of this and that you might have found a “sweet spot” for Topamax. I wish I could have handled that stuff but then maybe this migraine program I’m about to embark on will do the job. Have you noticed a drop in anxiety?

Scott 8)

Thanks Scott. In fact, yes, I have noticed a big drop in anxiety. I have always felt that anxiety was a big part of MAV, at least for me, and since “letting go”, my symptoms have gone down a lot. Also, by just getting out there and pushing through the symptoms, things have further improved as well. Almost like building up a tolerance to the condition somewhat. But don’t get me wrong, the topamax was VERY HARD at for a long time. Finally, it seems to have kicked in, and has me in a semi-decent place. I hope this continues :slight_smile:

Boslee