I have been been diagnosed with MAV. I have been suffering since Dec 7 2012 and have seen about 6 different doctors. I woke up @ 1:30 a.m. spinning and sweating profusely. I was brought to the ER in an ambulance because I could not balance my self to stand up and walk down the stairs. I have been on nortriptyline for 5 weeks now, starting @ 10 mg and increasing by 10 each week. The light and vision is not a problem for me but rather I am very sensitive to sounds and loud speach. I am particularly sensitive the crumpling of paper and plastic, silverware on plates, and higher pictch sounds. I have been out of work since that terrible morning.
Are each of you out of work, disability, if not, how do you handle work? Do you drive? How have you alter your lifstyle. I used to bowl and play softball, work in the yard. I am 59 years old. I also cannot handle commotion and and confusion and a lot of noise. How do you socialize with your friends? Just trying figure all this out.
Hiya sorry to hear about your suffering it can be hard I don’t really have the sound thing but some people on here do apparently the ear plugs musicians wear are good, lifestyle does matter are you on the diet? Having enough sleep going to bed and getting up at the same time not pushing yourself hopefully the nortryptoline will help you I’m on a combo of nortryptoline and pregabolin, I have always worked until feb this year (I got made redundant) it was a very low stress job.
This forum is really good for information have a read through, and I don’t drive not because of this I just cant lol but a lot do.
So sorry you are dealing with this. it is a very miserable condition!
I work from home, thankfully. I used to work in a busy hair salon and it did not work out so well. During my MAV episodes I had to rearrange my clients schedules as the bending over sinks and trying to formulate color, ect was impossible. So now I manage our home business office. Still hard but I can go at my own pace. As for social life, I just don’t socialize much anymore. I would love to but during chronic cycles of MAV I just don’t plan anything. It’s very hard as it is an invisible illness. People don’t always understand. I used to be bothered by light but lately, like you, it is sound. Music in the car, tv too loud. Ugh. It’s like having the dial turned up on our central nervous systems and we become sensitive to everything.
Hi…I,too, have been recently diagnosed and have been housebound for five months, except for doctors’ appointments. I am lucky for I was and am a housewife, but not a very good one at that right now either. I miss being a better mom to my two little girls and that is what keeps me going to try and get better. I tried topamax and could not tolerate it. Does anyone else know of a mav specialist who is good in ne? Anyhow, I wish you well. Thanks, Leann :?
I am still waiting for ‘official’ diagnosis. I used to go to gym and shuffle/jog, found noise and smells too hard, changed to yoga, but dizzy lying down, and then one day just found i couldn’t do anything,
walking felt shaky and off-balance, had to regularly lie down, too stressful making dinner so did earlier in day. had to put home based business on hold, so hard to do anything.
wear ear protection when vacuuming etc. sometimes I get dizzy or head beat talking to people. fairly clear-headed at moment, trying to stick with low tyramine headache diet,
found noise brings on dizziness, I avoid lots of places, before I found this forum I thought I might be developing agoraphobia.
I have sensitivity to glare/sun/fluoros, don’t garden. Had six weeks at beginning of this year where I felt like a curse had been lifted off me, but it came back with some episodes of
vertigo, which I hadn’t understood the different types so didn’t recognise. I have to pace myself if i can, i gradually was able to go for gentle walks, take my earplugs/sunnies with me,
but find stressful environments will really wipe me out, take a small valium to help cope if i remember. It’s hard to plan anything though, because i never know how I’m going to be.
Thank you all for commenting on my post. Robert, thank you for the links, I will look over the powerpoint presentation.
I live in Rochester NY. It seems that many people live in Australia and UK.
How much does diet really effect MAV?
I am glad to see that others have the sound sensitive issues as well, it is nice to know I am not alone.
I wonder if anyone is on permanent disability because if MAV and if so how is justfied by the insurance companies. My current specialist is a Neurotologist, a specialist within the ENT (otolarygology field). The most recent test was CT scan to see if there was a dehiscense - a detrioration or hole in the temporal bone. When this was negative, along with all the other tests - MRI, EEG (brain scan) and VENG - it pointed to MAV. I find it surprising that most people on nortriptyline are on a very low dose, this past week I was on 50 mg. that will be increase to 70, starting tonight, and can’t tell any difference.
I’m sorry your going through all this. There are a lot of people on here from the UK but I am from California. I was dealing with vertigo in 2008 and it went away and came back this year and has not left. I am quit ill as I am always dizzy and light headed. I to am taking nori and have found that it has only made me sicker. I am getting ready to try a new medication. As far as working, I work a very demanding job that requires me to work sometimes more than 9 hours a day and I commute in the busy California traffic. It is tough having MAV and working but I have no choice. Once you learn how to cope with this illness and find the right medication to rid the dizziness, it Will get better. I am struggling with this illness and still trying find the right medications. I sure wish you the best of luck and hope you get better.
Jeff and other ‘newbies"
Sorry you have to be here on the forum but if you do have MAV then it really is one of the best places for you to find evidence-based information about this condition. There are many puzzling and weird symptoms that can show up and often be quite worrying when they occur so the forum is the best place to come for reassurance and help. We have all been where you are now and can assure you that you will get better, there are many meds you can trial that can help you get your lives back and you won’t be stuck in "MAV HELL’ for the rest of your lives.
In November 2010 I was where you are now - could not find any doctors who could diagnose me, give me any medications to help stop my daily migraine headaches and vertigo. After finding this forum - reading all the publications and getting enormous help and support I found a neurologist in Sydney who diagnosed me with Migrainous Vertigo and prescribed medications and am now getting my life back.
I live in Australia but had to fly 2,500 kms to see the specialist. Members of this forum come from around the globe and all willing to help support each other. Some are working full time, some have young families, some retired - all have their own difficulties to cope with. It is a hard illness to deal with, especially as we look pretty normal to our friends & family and most doctors don’t have a clue about it! Printing off some of the ‘evidence-based’ lit for your docs to read can also educate them! Also have a read of Dr Silver’s latest presentation - there’s an amazing about of interesting stuff in it.