I have been off work since October 2007. The doctors orignally diagnosed me with Mal de Disembarkment. I then saw many various doctors and neurologists, ENTs and finally was diagnosed with MAV in April. I am currently on 150mg Topamax and 60mg Prozac. My doctor has left the practice and now I am under the care of my primary care physician who has no idea what MAV is. He requested that I return to work 3 days a week, 4 hours a day and my job accepted it. I have migraines 4-5 times a week, light sensitive, sound sensative, you name it. I dont know how I am going to cope. We still haven’t found the right “recipe” to take these migraines away. Any advice?
Jo- If I were you (and this is just my opinion) I wouldn’t push it. I’d do whatever it takes not to return to work until you are good and ready, and feeling well. I only say this, because in the beginning, I was in the position where I had to work, and just kept pushing, pushing, pushing, and I think for me it ultimately made everything worse.
Sounds like you either need to educate your PCP on MAV (and everything that goes with it), or maybe find a new specialist?
I know, thats easier said than done huh? Sorry you are having a tough time, but welcome here.
Kim
Good question. Before I offer advice here, which I may very well have some, I need to get some perspective from those of you who used to work while having MAV but no longer do. I am still working full-time, although admittedly not to my full potential. I am considering a temporary medical leave of absence. However, I am wondering if that is really a wise idea. Has time away from work and the stress that comes with it helped anyone get better or is it more about the right mix of meds, diet, and environment? So, I guess I am coming at this from the opposite direction as jodizzy.
Also, jodizzy, how has your experience been with Topamax? I am currently taking 100 mg. I’ve been on it for 6 weeks and it helps with headaches but not my aura symptoms, which are much more bothersome than the headaches to me. I’m trying to give it 3 months. We’ll see…
Marci - I can only speak for myself, and I’m sure others will have something to say about it, but this was my experience:
I had no choice but to quit my job when I “crashed”. Stress has always played a major part in my MAV symptoms. I’m fortunate that I run my own business from home now. When I’m having a bad day, I only have myself to answer to. That alone has taken a HUGE load off me. I don’t believe I will ever be able to work for anyone else again. I was always the type that felt guilty as Hell calling in sick for any reason. For me, it was a terrible cycle, the stress only added to my problems.
Yes, I’m fortunate that I’m so much better now than I was, but I also know, for me, every day is different. Some days I feel fine, and some days I don’t.
Everyone is different, so what is good for one person, may not be good for another. In the beginning of all of this, I had no choice. I could barely get out of bed and walk to the bathroom. Like I said, for me, it wasn’t about options, it was what it was.
So, to answer your question - time away from work in the beginning was not an option for me. I had no choice. Getting away from the **stress **of 50 -60 hour work weeks was the best decision I ever made. But at the same time, I wouldn’t be as well as I am today without the meds and diet also.
I believe alot of us (not all) are hampered with this condition by stress. So, I guess it depends on how stressed out you think your job makes you, and how (if at all) you think it may be affecting your health.
(Just want to clarify - in my earlier post: I said I was in the position that I had to work. I was. I am a single parent, and when I got hit with this, my world turned upside down. Quitting my job wasn’t an option, however, very quickly, I truly didn’t have a choice… Hope that makes sense?? 
jodizzy,
No doubt, you need to find a specialist in MAV. You’re already on a decent amount of Topamax with any improvement?? Whereabouts do you live? (in general)
I also run a business from my home, did before my crash and still do. If I worked outside, there is no way i COULD, or WOULD, go back to work. I can’t imagine it would do anything but make things worse, at least where I am right now. A few months ago Kira was burdened with increased work stressors and after 5 years of being stable, had a relapse.
However, interestingly, I heard from a member of the forum the other day. She said she was feeling lousy, but the more she was up, the better she felt, so she was going to stay up until she exhausted herself, just to get rid of these symptoms (paraphrasing). I PMd her back to make sure I had understood her correctly. My God - the more I do, the more I’m up the worse i feel - BY A LOT! Is anybody else out there BETTER by doing more ?
Marci,
Like Kim, I was bedridden. I am still housebound due to motion intolerance. Before my crash, i engaged in as many of my normal activities as I could and I don’t think it hurt me to do so. It didn’t feel like anything I did was worsening my symptoms - if it did, i would have stopped doing them. Lying in bed didn’t make me better - in fact, i was on a steady, fast downhill course the entire time i was in bed for a year. the only thing that turned me around was the treatment I’ve received.
Julie
There is no clear answer for me. There are days where I am obviously too sick to work, so I take a sick day. Every other day, I feel lousy in the morning but I make myself go to work anyway. Some days, the more I do, the better I feel so I am glad I made myself get out in the world. Other days, I get to work and I feel worse than when I got up. Most days, I feel like I am on a rollercoaster. I feel okay for a while, then like a dizzy, tingling, zombie for a while, then back to okay and the cycle continues.
— Begin quote from “MarciM”
Also, jodizzy, how has your experience been with Topamax? I am currently taking 100 mg. I’ve been on it for 6 weeks and it helps with headaches but not my aura symptoms, which are much more bothersome than the headaches to me. I’m trying to give it 3 months. We’ll see…
— End quote
Im beginning to rethink what my doctor’s plans were for me. I was on Topamax for 1 1/2 mos at 100mg before he moved me to 125mg then 150 after another month. I’ve been reading other posts and people are saying it takes 3 months to see its effectiveness. Is this true?
I’m also taking Prozac 60mg due to the MAV bringing me down and making me fell less than a whole person. I have trouble tracking a normal conversation so I dont like social gatherings much anymore. My memory is worse than my mom’s (she’s 26 years older than me!). My confidence is not there. I feel so bad for my husband and my two young boys b/c they dont have the same Mom they used to just less than a year ago.
— Begin quote from “jodizzy”
Im beginning to rethink what my doctor’s plans were for me. I was on Topamax for 1 1/2 mos at 100mg before he moved me to 125mg then 150 after another month. I’ve been reading other posts and people are saying it takes 3 months to see its effectiveness. Is this true?
I’m also taking Prozac 60mg due to the MAV bringing me down and making me fell less than a whole person. I have trouble tracking a normal conversation so I dont like social gatherings much anymore. My memory is worse than my mom’s (she’s 26 years older than me!). My confidence is not there. I feel so bad for my husband and my two young boys b/c they dont have the same Mom they used to just less than a year ago.
— End quote
I know exactly how you feel. Hang in there. I’m sure your boys, husband included, know you love them and are doing your best.
Below is a link to an article about Topamax dosage and titration for migraine treatment. It might help answer your questions. I’m curious. Do you think your memory problems are from the MAV, the Topamax, or both?
http://www.healthcentral.com/migraine/medications/topamax-151847-5.html
MarciM - thank you so much for that link! I am new to this forum and new to MAV (just diagnosed in April). My doctor has had me taking all 150mg at night and it’s only July 1st! I think the memory problem is from MAV. Ive had this problem before taking Topamax but they also gave me Klonopin before this so it could have been that as well.
Julie - I have seen some improvement with the Topamax. I am not in bed every day in the dark like I was for 6 months but can come out for a few hours in the day (with sunglasses). I do more than I should b/c I have two young boys and feel guilty if I dont do this or that with them. My mom was that way and I turned out just like her. You cant sit still but then you feel awful and a huge migraine comes on and you have to lie down. Last year I trained to do an Olympic triathlon and it was one of the best experiences ever! I miss that. I want to do that again. I love to swim and ride (not much of a runner). But it is hard when the ground looks like it is moving as you are riding along.
I talk to my employer about returning part-time temporarily on Thursday. I’m worried just b/c I havent been there for so long and I still don’t have these migraines and dizziness under control. Im worried I will go back, work a few days then tell them I can’t work AGAIN and they fire me. Then I have no job, no income, and who is going to want to hire me when they say “she wasnt mentally capable of doing the job”.