I was at a family function today (my Aussie family) up in the Blue Mountains and one of the girls there had MAV. I found out about her last year, that she had been dizzy for a few years but that nobody knew what was wrong with her. It hit her when she was about 37. So I rang her up last year and asked her to list her symptoms to me. The first thing she said was that exercise set her off. I then asked her back then if she had ever had migraine headaches … and she had. At one stage in her twenties she’d had a solid year of head pain which suddenly stopped. Her mother was also a migraineur. So then I asked her what she was eating … she replied “cheese every day with lots of chocolate breaks”. It was pretty obvious so I told her she likely had MAV.
Today she was a new person. Not cured but TONS better. Since we talked she cleaned up her diet and eased off on the exercise keeping things much more moderate and consistent. She also makes sure she sleeps regularly etc. She has now gone from being dizzy and nauseated daily for 3 years to feeling dizzy no more than twice a week for a few hours. She’s unmedicated too. It’s all a balancing act for her and she wants better control so I told her to check things out with Halmagyi at RPA Hospital.
It was great to compare notes. When I was explaining the way I experienced this in daily life she would sometimes react with a big “YES”. We were definitely on the same page. I think her case is relatively mild really (lucky thing) and with a med she could probably easily shoot up to 100%. On the other hand she may opt to just stick with the lifestyle stuff.
She related to all the things we discuss here: sudden depression or anxiety at times. Symptoms ramping up when she was stressed, particularly in confrontational work meetings. Feeling “out of it” for a day or two and then suddenly snapping back again. She had a considerable amount of nausea with her MAV. But like all of us had her own slightly different set of symptoms.
Anyway, good to chat with someone else with this and know she was so much better.
Great story. Thanks for taking the time to share with us. If we don’t have hope and others that have beaten MAV to be our “heros” then what do we have?
It definitely is a sisterhood/brotherhood with us migraineurs isn’t it? Glad you had that talk with her Scott. Sometimes I wish mine were as easy as dropping a few foods and I would feel so much better…not the case though!!!
I know. I thought the same thing. If only simply removing cheese and chocolate from my diet was enough to drop my migraine threshold down to my ankles again. She’s quite lucky but still has to be very careful and does still get run over by the migraine freight train occasionally.
Thanks Lisa. I am in much better form the last few days and feel as though I’m back to my usual baseline. Since stopping the Ativan things changed dramatically. I’ve only needed one or two small doses of valium not long after I quit Ativan. Yesterday I broke the rules and had two thin slices of chocolate cake and two glasses of champagne. It gave me a mild headache last night and this morning I woke with my heart racing but I feel fine now.
To Scott
I have been reading through the Success Story letters, and I was so moved by them, that all these people have had my symptoms and after a long time of finding the correct medicaton they are in a form of remission, I wanted to cry. There is light at the end of the tunnel.
My first Vertigo was in September 2006, it was very minor and only lasted a few days. In 2007 I had the same mild form which I was able to cure by doing an excersise by lying with my head over the side of the bed and slowly rotating from left to right and back to upright, which was a miracle cure and I passed it on to a couple of my friends who had it also, we all decided we had caught a virus of some sort that was going the rounds, via our ears !!
In 2008 I had been preparing for nearly a year for my 70th birthday at the end of April, for me and my twin. Plans started in April 2007. All had come together perfectly. Four 4 weeks before my birthday I had what I now know as my first MAV episode. All symptoms as I have just read, Now I know to be one massive migraine attack with all the symptoms plus dizzyness and beds and rooms moving about, but NO headache.
I was ill, violently sick and unable to move, light and sound were terrible, neckache shoulder ache, I didnt want to be 70 if this was old age. This attack lasted 11 months, with the occassional few days of normality then back again the longest break I had in that 11 months was 3 weeks. My Doctor prescribes me seasick tablets !!! and when I was able to get to his office and beg for something to cure my head not my stomach, he laughed at me. I felt so miserable. My party came and went and the only memory I have of it are the many photographs that were taken.
In June 2008 My Granddaughter came over with my Great-grandson and photos were taken again, I was huge !! I looked like
a balloon even my face was swollen. And it went on and on with me wondering each break when would it be back again.
February 2009 I flew to South of France for a break. Could it be the air pressure, the going up or the coming down. VERTIGO? WHAT VERTIGO. IT WAS GONE. And I felt happy normal no worries, I was better.
Remember all this time I thought I had Vertigo and my Dr said I made him laugh when I managed to stagger into his office like a drunk. I didn’t even think it would come back, well it did, in June for 3 weeks and now September/ October its 5 weeks now and I went for a walk 2 days ago, I’m okay when I stand still or sit still. The bed isnt flying around the room and the Hallucinations stopped after the first 10 days, Oh yes the hallucinations before were horrendous, this time they were beautiful, artistic, pretty, and I could see them with my eyes open or shut , really quite miraculous, I cannot even draw a cat. I’m expecting to fly to the South of France again the end of this month if I can get to the airport. PLease let it be my cure again. I need to find a Doctor who will not accuse me of using the internet and knows about MAV.
My twin got vertigo 2 weeks ago and is not at all happy with me. we both had migraine for about 40 years and have been free for about 20 years.
Thankyou all for being there I will keep watching for your input .
Denise.
Welcome. I am glad you found this site. It has been such a support for me. I hope that you can now find a doctor familiar with MAV and move forward with appropriate treatment. Keep us posted.
Welcome! I can remember the sheer relief as well when I first realised that others suffered as I did and I wasn’t alone with the vertigo. I’d had migraines for many years but hadn’t been aware that vertigo could be part of the migraine spectrum. I too walk like a drunk sometimes! How unusual that flying seemed to provide you with a temporary cure, it’s often the other way round, exacerbating the problem. Just goes to show how MAV affects us all uniquely.
Good luck in finding a sympathetic and knowledgable doctor. That’s half the battle with MAV. And it really helps having the input and support of like minded sufferers.
Hello Brenda Lisa and Scott
Thankyou for your mail.
Denise here again,
Well I did it, I flew to the south of France on November 3rd. Prior to going I had a very bad sensation of my head about to explode, I got an emergency appointment with a Locum Doctor, and it helps to have someone new to listen. She prescribed Cinnarizinne 15mg 2 x 3 a day for 4 days. Since then I have been able to control the worst of the dizzy spells and the migraine symptoms faded, off came the dark glasses and my hearing wasn’t so intense, just left with lying down and getting up. I still need 3 pillows and sleep well usually waking up flat on my side with stiff neck and shoulders!.
My daughter saw me off at the airport as I hadn’t been out of the house for 8 weeks except 7 times to walk the dogs a very short stagger and back. I felt so drugged up days on end. The flight out was as expected, the awful thrust upwards with head thrown back and ears popping, on arrival at Nice my friend picked me up and from that day onward I was out every day. The easy walk down into the town then the struggle back up again, very tiring but I gained strength every day. I only had one bad turn in Church on Sunday I went madly to the left and was caught by a man on one side and my friend helped me back to my seat where I sat and cried. It was such a shock and so embarasssing. Apart from sleeping on pillows I was very well and so happy in myself (Normal). The only bad time I had was going round the roundabouts on the wrong side of the road and the wrong way; I had to hang onto my head until we got back on the straight. I flew home on November 12th and had my 2nd dose of flight therapy, it certainly seems to work for me .
I take daily 2 x 3 Betahistine Hydrochloride. When I am well I take one at night and morning. I did have 3 month well, July August and September, so they possibly work. This tablet is " a histamine agonist, thought to dilate blood vessels and smooth muscles"
I can’t say that my idea of flying is the cure of MAV , but I hope to get through Christmas and New year WELL . I have now dropped all Migraine triggers so heres hoping, Best wishes to everyone, Denise xx.
Well done! I think you were very brave doing what you did. I used to take cinnarazine and betahistine a long time ago. I’m still amazed at the success of your flight therapy! But if it works as they say … just a pity you can’t bottle it and take it daily! Hoping your relatively well period continues for you over Christmas and the New Year.
Great story about the fellow MAV sufferer. Also being new to this site it was greatly comforting to read:
“She related to all the things we discuss here: sudden depression or anxiety at times. Symptoms ramping up when she was stressed, particularly in confrontational work meetings. Feeling “out of it” for a day or two and then suddenly snapping back again. She had a considerable amount of nausea with her MAV. But like all of us had her own slightly different set of symptoms.”
and realize that I’m not alone with these crazy symptoms. Sudden depression, worse mental fog due to stressors, snapping back to feeling better then diving down worse again, also the continual nausea and dizziness. Just seeing it written that others experience such similar problems gives me a sense of relief. I’m not alone!
Welcome to the board. You’re definitely not alone. These crazy symptoms effect everyone here in one way or another. It’s really something else this migraine junk.
Hoping your relatively well period continues for you over Christmas and the New Year.