It’s been almost half a year of my living with the symptoms of this awful illness. I keep getting sucked in to coming here and reading about others’ plight, hoping I’ll find some kind of answer. I think we all know how that feels, because we’re not getting the answers elsewhere. But every time I come on here, I walk away entirely hopeless and depressed. The few “success” stories are so varied and intermittent that it doesn’t seem like there’s much to take away from them. And the more I read the more I think that this is what my life, at 25 years old, is doomed to be. It makes me want to give up. There are days that I don’t let this get to me, and I laugh and I love, but then the physical restrictions become too much and I search again. I’m getting married in October and I almost don’t want it, don’t want the day to be marred by what my physical condition has turned me into. I guess I just wonder if I’m the only one who can’t handle the truth on these boards. I appreciate that it’s here and I’ve learned a lot from it, but I know what I know and continuing to read only seems to push me further down the rabbit hole.
Hi Adrir,
I think every single person who’s ever been on this forum understands exactly how you feel. It can seem hopeless at times. There are lots of success stories (I am one of them, touch wood) so don’t give up. I guess the thing to remember is that most people who get well don’t visit the forum very often as they no longer need to. Most people with MAV can and do get better, but it can take time.
Hang in there!
Vic
Thanks Victoria, I didn’t know what I was going to gain from posting this, but I think it was your reply!
Adrir,
Thanks for your post. I’m turning 25 in september. I have had this for 2 years. constant disequilibrium 24/7. my whole life has changed and it’s hard to remain positive i know because we are so young and it feels like we will have this forever. I’ve been with my partner for 6 years and one day when to get married when i finally get over this. I have only just started taking medication 6 weeks ago so i am hoping this will be my miracle. What are your symptoms exactly and have you started taking medication???
I stopped going on forums for a long time but have started again coz it’s reassuring knowing there is other ppl out there going through the same thing and who are making good progress.
When ppl overcome this, coming back to the forum is the last time on their mind, hence why there isn’t many success stories.
Hang in there.
Ella
Hi Adrir,
I agree with Victoria. We can all relate. Please don’t despair. Most of the folks who get better do move on with their lives and no longer visit. I imagine part of the reason they don’t visit is because they don’t want to remember when they were in the same depressing phase of their own lives.
I believe attitude is a KEY component to managing this miserable condition. I was where you are at one point in my recovery. I had been sick for 8-9 months or so when a very wise member of the forum advised me not to allow myself to get too caught in the “woe is me” trap that is so easy to fall into when you are feeling at your worst. Here is part of the message, with a few edits, that helped give me the kick in the pants I needed. Once I had the right attitude and refused to give into this condition I began my recovery. A positive attitude and a bit of tenacity will get you far in finding what will make you better. You have to be your own advocate and pay attention to your own instincts. Now on to the wise advice from a MAV friend who went from being VERY sick to successfully managing MAV with only a trace of residual symptoms:
**"Please remember that most people are posting here because they are NOT doing well. So we are getting a very one-sided situation here. If everyone with MAV was forced to post here, there would be a lot more positive stories than you would ever imagine. Good move with staying away from the forum just a little bit. I’m not saying don’t go, or don’t use it for support. But perhaps try once per week for a while, and try “living”, even though it’s a bit tough right now. I think before you know it, your brain will start realizing that you aren’t supposed to be this way, and will begin to make corrections. There are MANY mornings that I don’t even want to get out of bed. But here’s the thing Marci, and I think this is where a lot of people go wrong. You have to PUSH. If you let yourself sit back and do nothing, or do very little, your brain will become lax, and will be capable of less. That is one thing I’ve learned from the people who have gotten well. They got out into the world, and continued to drive, and continued to go out, even when it made their eyes hurt, and made them sick to their stomachs. They didn’t push themselves so hard that they made themselves worse as a result, but enough that they made their brains realize that “Hey, these are the things you are SUPPOSED to do. Now get out there and do them!” And by doing that day after day, regardless of the symptoms, and continuing the medication trials, eventually, they got well. Even the very sickest of people.
You mentioned reading the horror stories. We start to worry that we will become just like that, and in doing that, we continue to fuel the migraine, and we get worse. Part of getting better means that we are going to HAVE TO get control of our emotions. Whether that be with additional medications, or therapy, it’s a must. When I read that line in your PM to me about reading posting about being bedridden and worried you were going to become that way, trust me, I know exactly how that hit you. I felt the same way when I was new here, and it hurt me big time. I got MUCH WORSE as a result of that, and I actually started to believe that I was done for. Now I realize that it is the people who don’t get well who are the exceptions, not the other way around. Now I’ve changed my attitude around again to where it should be. I have found common traits among these people who have gotten significant relief, and all of them refused to let it stop them from doing what they had to do. That’s not to say that they didn’t suffer. Quite to the contrary. But they pushed, they went on, they gave medications a fair trial, discarded the ones that didn’t work properly and moved on when needed, and as a result, got well.
You asked me about my situation. I got hit HARD, and got it all at once. Just woke up like this one day with the dizziness, the rocking, objects appear to move around, insane light sensitivity, motion sensitivity, intolerance to head motions, exercise intolerance, intolerance to walking more than 20 feet without feeling like I am going to fall over, intense vibrating and buzzing in my head, and fullness in both ears. I’ve decided to do what the winners have done. Push through the symptoms, let my brain know loud and clear that these activities are EXPECTED of me, keep my emotions under control as best as possible (take anxiety meds when all else fails), and give preventatives FAIR trials, at maximum dosages (if needed) for at least 3 months before moving on. If one med works well, but not fully, go back to doc about ADDING to the existing med instead of replacing. That’s the winning strategy for this, as explained to me by the experts as well as many patients who have succeeded. And some of these people were FAR worse off than you or me. These people were in bed with their eyes shut because of bad motion intolerance."**
When this PM was written to me, the author was not yet well, but by using this strategy, 99% recovery was attained. I too have made great strides in my recovery by following this advice. Finding the right mix of lifestyle changes and often medications is critical, but a positive attitude with a healthy mix of tenacity/stubbornness may be the key ingredient.
Hang in there! I hope my friend’s advice helps you too!
Marci 
I totally get it. I’m turning 25 this month, so I’m young too. I got married in January 2009, and I was so horribly nervous that I would feel awful that day. But you know what, I was fine, and it was a beautiful day. This month marks my 4 year anniversary of having vertigo (I had my first attack just a few days after my 21st birthday). I went a very long time not knowing what was going on, not even able to work and having no hope. I am not on any meds for MAV (mine is headache-less, btw), but I have learned better what triggers me (being tired, hungry, overheated, stress, fluorescent lights, hormones (especially the birth control pill)). I get out of situations if I start to feel bad. I rest when I need to, and I forgive myself if I just don’t feel up to doing anything. And I do believe that my body has learned to somewhat compensate for my dizziness. Over the past 8 months or so, I have felt better. Not 100%, but a bit better, and more able to function out in the world. It’s an ongoing process, and who knows how I’ll feel tomorrow, but today, right now, I feel ok.
Thank you, thank you, thank you all.
This is just what I needed. And bless that kick in the pants you got, Marci, and for passing it on to me :lol: !
-Adrienne
Ella, my main symptoms are visual vertigo & difficulty with balance/distorted vision in areas with lots of stimuli. It started off with constant dizziness but seems to mostly be visual in nature now.
I saw one neuro-oto who put me on effexor xr, 37.5 mg. I took it for about 2 months with no significant change. I did try increasing the dosage for 2 days and felt really unwell so I went back to the 37.5. I really disliked the doctor who prescribed it to me (he made me feel very rushed, got angry with me when I called him to ask questions, and in general didn’t seem to want to be bothered with me), & I saw another neuro-oto and migraine specialist who have told me to stop the effexor, so that’s what I’m in the process of doing now – weaning off.
I’m going to go med-free for a couple weeks to clear out my system. The migraine specialist recommended that I start doing aerobic exercises at least 30 minutes a day 5x/week so I’ve started a workout regimen for the first time in my life. He also recommended that I begin taking CoQ10, vitamin B12 & D (both of which I was low in on my blood tests), and do neck exercises throughout the day. So that’s where I’m at right now.
The second neuro-oto I saw also put in a referral for me to be evaluated for vestibular rehabilitation therapy as I was VERY off-balance on a postural examination (Equitest); I know there are mixed reviews about whether this is helpful for MAV but I’m willing to give it a shot.
adrir, i can very much relate to a lot of what you are saying.
i’ve been to more specialists that i can remember and feel so though none of them actually care and always feel rushed. i even travelled interstate to see the best neuro-oto in australia and spent about 15 mins with him and didn’t really get anywhere.
as mentioned i’ve had this for 2 years and put off taking medication until i had exhausted ALL other options. i’ve tried neck excerices, physio, CoQ10, B12 + one million other things including 4 months of intense vestibular rehab. nothing worked for me (not to say it won’t for you). i was very anti-med - besides we are so young and the last thing i want to be doing is taking anti seizure medication.
however, enough was enough and i reached the point where i could no longer go on… i had to give it a shot - it’s been 6 weeks now and right now i feel great. I’m only on 37.5mg of Topamax per day but it seems to be making a difference. I’m not saying my symptoms are gone - but my head seems clear and the ground seems flatish - this is huge for me. I am hoping when i get up to between 50-100mg a day i will get over this once and for all. (topamax hasn’t given me any side effects yet)
try these recommendations that your doc has given you but if you’re not getting anywhere it might be worthwhile to get a different medication a try.
all the best,
ella
Just curious, Ella, did the vestibular rehab create any additional symptoms for you or did it make no difference one way or the other?
I’m pretty sure that I will end up having to try another medication, I’m just kind of lost as to who to turn to. I think I have to give these lifestyle changes a fair shot before I tell the migraine doc that I need something else. They’re good for me in general anyway, so I guess I’m TRYING to look at it that way (obviously the emotional stuff is a big struggle for me, WAY more than the physical symptoms. I have an anxiety disorder – have for years – so I’m not exactly surprised).
HI,
I personally believe my stuff comes from anxiety. I started out with a dizzy/lightheaded feeling several times through out the day, and it seemed to get worse in certain lighting (dim restaurants) or flourescent lighting at the grocery store/gym. When my vision goes off, it triggers anxiety…like what the heck is going on? The anxiety feeds itself and the worry kicks in about what’s wrong. Now that I have had all the work ups and realize what is wrong, and that it isn’g going to kill me,
I can get more comfortable with it. But for me, the huge thing that helped was medications…I am about 85% better now and I am taking Cymbalta (similar to Effexor, which I had a hard time with) and I added BuSpar, which is in addition to the
Cymbalta, and is specializing in anti-anxiety. I was taking Klonapin, but worried about addiction. WHen on the Klonapin, I felt more comfortable with my dizziness, and that let the dizziness subside a bit. So I asked my Doc if that was an indication that my symptoms were anxiety based…she agreed and recommended the BuSpar. It is supposed to take 1-2 months to show results, but I noticed it immediately, even on small doses. I stopped the Klonapin and the BuSpar is really
keeping the anxiety at bay. My sleeping is better and my dizziness got worse, but now getting better going into week 3. I take 10mg at night and 5mg inthe mornings. Still low doses…
I’ve considered posting in “success stories” but I’ve felt better and then got a little sideways and had to regroup a few times…but I’m hopeful that my brain chemicals are getting balanced out.
Best of luck to everyone!!!
Kelley
just thought id bring this post to the fore of the messaging boards… the post written by MarciM is quite inspiring
Richy
I agree - in fact I think Marci’s post on how attitude is a KEY component to managing MAV would be useful as a ‘sticky’ in docs to be read. I’ve just printed out a copy as a reminder of how I need to deal with this stuff to keep progressing.
Barb