The future of someone with MAV

I’ve been having a real hard time dealing with all of this and I know I’ve only had this a month now, but I was wondering if anyone can tell me about the future of someone with MAV. If I can get this under control with my diet, strict sleep cycle, and and hopefully (fingers crossed) the Topamax I just started taking and get my life back or most of what was my life back then in the future can I have another baby? I only have one child and it was my dream to have at least two, but preferably three or four. I know I will have to ween off my meds, but will the migraines come back and the horrible diequilibrium? Does anyone know of people that have had this and weened off the medicine and MAV never came back? And did these women have children after having MAV and were they ok?

Also, has anyone flown on long airflights while having this condition? Once I feel well I would love to take a vacation with my husband and we want to go to Europe so will a long air plane ride cause decompensation? Hopefully I will get well in the future (hopefully before this year is over) and I don’t want to chance an air flight and cause me to be back to square one like where I am now (constant disequilibrium, feel like I’m walking on a sponge constantly, etc.). Thanks

I’ve been dealing with this now since May of 2008 and I am truly hopeful that I will get it under control and lead a “normal” life again. I think it’s a matter of time (…which I think is big), lifestyle changes, stress management (a big one for me) and medication if necessary. I think once I find something that “works” for me, I won’t live in fear that this will come back and haunt me throughout my life, because I’ll know how to deal with it. I think that is the scariest thing about this condition…the loss of control.

I too would like to have a bigger family. I have a 3 year old and I’m 31, so I don’t want to wait too long. I’ve actually heard that migraines get better during pregnancy…a nine month break from this would be nice! But, I don’t want to start adding to my family until I find something that works for me. But, I’m sure it will start to ease up. I know that I feel better now that I did even three months ago. Slowly but surely it seems to be letting up.

On the positive side for you…you were really lucky to have gotten a diagnosis and on some medication as quick as you did! That’s great. I didn’t find this website until October (after 5 months of being dizzy) and in the meantime, my doctors had me all over the place. I have my first appointment with a “dizzy doctor” on Tuesday…10 months later!! So you definitely have a head start in the getting better department.

I really hope things start to get better for you very soon!!

BTW, I’ve been in an airplane since this all started and I was fine. It was only a two hour flight, but it was okay.

Hi Colleen,

Are you currently on any medicine? I started taking Topamax the other day and it has increased my disequilibrium and dizziness. I don’t know if its the right medicine for me. Do you have any balance/equilibrium problems still? Or have they gotten extremely better over time. I’m trying to consider just taking a natural approach to getting better, with supplements and diet, and sleep. I know I need time to get better as well.

I’m 31 too and I I’m so sorry that you’re dealing with this as well. I hope one day all of us will be free of this.

Dizzyinaz,

Right now I am not taking any medications. In the summer I tried Nadolol, which is a beta blocker. It seemed to help my dizziness a little bit but at the time I was still having pretty bad headaches so I stopped. But for me, the only side effect I had with it was that I was a little tired, which was okay. I also tried Vivactil (a tri-cyclic anti-depressent) for like 3 days, but it made me REALLY dizzy. I also tried Verapamil for a week and I felt like garbarge on it (looking back though, I think the dose I started on, 120 mg, was a little too high for me), so I’d give it another try maybe. I have also gone to physical therapy for about two months (Nov-Jan) and for me, it actually made me feel a little worse. It was not vestibular therapy but manual therapy on my neck and like I said, usually I felt worse after. The first five months (May-Oct) were definitely the worst for me. I was SO anxious and this was seriously all I thought about. As time has gone on, it seems to have let up a little and I can live with it…although I will keep trying anything to help :slight_smile: I have been following the migraine diet for about a month and it does seem to help me a little. I notice at night that I’m not as dizzy, which was typically the worst time of day for me.

Two weeks ago, an neuro-opthalmologist told me he believed I had vestibular migraines, but before two weeks ago, I really didn’t have a definitive diagnosis. On Tuesday, I am going to see a neuro-otologist and hopefully he’ll be good and help me figure out a plan/medication that will be a good fit for me.

The future is certainly uncertain, but I can only speak from experience. So here is what i can say from MY experience. The more time with MAV USUALLY brings more and more compensation, which means an easier time dealing with it. My first 10 months with MAV was intractable. I thought I was going to die. I could barely function. 4 months after starting topamax, which I started 4 months into my horrific nightmare, I started to get better. Now, a little more than a year later, I am at 90-95% virtually all the time. A couple weeks ago, I had a nice stretch of virtually 100% for the first time EVER since my ordeal. I honestly expect this to continue, and as more time goes by, my brain will make more and more compensation until I am finally 100% over this. I do believe that. Some here have suffered for decades. It’s all very individual. But I honestly believe that life gets better, and even back to normal or near normal. My MAV was so bad that I could barely go out. I was bedridden for the first month of my illnesss and housebound for a month or so after. I started to venture out for no more than 1 hour a day a little here and there. Now I’m back to taking trips, basically doing what i want. I know it’s impossible not to dispair. But you will be typing your success story here IF you don’t give up. Just keep fighting, keep doing medication trials (The correct way), and it’s hard work. You suffer through the side-effects and dealing with feeling INSTANTLY worse due to the effects, but eventually, things turn around. As I said, I suffered on topamax for 4 months before it worked. And now I am doing great! Hang in there

Rich

HI,
I’ve been officially diagnosed with MAV since August last year although I believe I’ve had it along with labyrinthitis since the end of 2004. I’ve been learning how to deal with it better through all of that time, and although there are many things that I still suffer with I truly believe that my future is with me being ‘normal’. I can truly sympathise with all of the posts I read and when you are newly diagnosed it’s very hard to deal with, but it gets easier, and you learn to not panic so much. I’m very new to the medication side of things however, finding the right medication could be make or break and investing a lot of time and energy into getting used to new medications might be a struggle for us I feel. But really - I think to start with, dealing with MAV is very difficult, but it does get easier, and it does get better - this is what the drs I have seen have told me and I believe that they aren’t just saying this to provide false reassurance.

I really wanted to comment on the flying also. I was very nervous before my first flight and took cinnarizine (also known as sturgeon in the UK). It’s available over the counter in the UK and is a vestibular suppressant which is really helpful for labrynthitis sufferers (maybe MAV???). It really helped calm me and gave me confidence, but I’ve done many flights since then (I have to fly every couple of months with work) and I’ve always been absolutely fine. I hope that provides some reassurance.

Best wishes
Tess

Thanks Rich, Tess, Colleen

Rich,

I’ve read some of your past posts and a lot of your symptoms sound similar to mine. Did you have the sponge walking feeling at all? I feel like I’m walking on a sponge all the times and its way worse on carpet and uneven surfaces. I’m also wobbily when I walk. Did watching tv, being on the computer, set the vertigo off?
Did you know right away that Topamax was helping you a little bit, or did you just decide to give it a four month trial and wait it out.

I swear when I get well I will never take life for granted again. I used to complain about really stupid little things before this happened and this has really opened up my eyes and I’m going to appreciate life to the fullest when I get better!

Also, congratulations Rich on getting to 100%, that’s awesome! I can’t wait to get there!