I’ve only recently joined the forums but have been battling with the ‘dizzies’ since 2001. In those 12 years I have had 7 very bad attacks and then managing to live relatively symptom free in between these attacks, but when they hit oh boy do they hit.
2012 I was finally diagnosed with what the specialist thinks is MAV and was given VRT exercises and have been on Propranalol and cinnarizine which has managed the symptoms ok.
3 weeks ago I rolled over in bed and span out big time and since then I have been off kilter.
Today I had to see a new doctor because mine is on holiday and he has basically said that an attack of MAV does not last for more than 3 or 4 days so I can possibly be experiencing that. I told him that the Propranalol is not working and could I possibly go back onto Pizotifen as I had success with that 3 years ago and he refused me. He said there are no treatments for MAV although Cinnarizine is helpful with the bleugh feeling that I always have, and that doing Cooksley/Cawthorne exercises are my best bet even though I said I do VRT but it doesn’t help me.
He said there is nothing he can do for me but that I should try some meditation from an American research place that he gave me the website for. He checked my bp,heart and also for nystagmus and proclaimed my vestibular system is working well and that I’m fine!
I have had rather a lot of doctor visits in the last 3 months due to some poor health and I get the feeling that they are frustrated and think I’m a hypochondriac suffering from anxiety. Yes I’m getting anxious now because he wont agree to put me back on my meds that I know work, I start a new job next week so wanted to be at the very least 50% more with it!
What I’m asking is are there any reputable research pages I can take back to the Gp next week to show that MAV is very treatable with different meds and that he needs to pull his head out of his bum and realise this(in a polite way!)
Oh and he told me to stop taking the Propranalol as that could be making my dizzies worse and causing the blackout type sensations… So as of now I only have cinnarizine in my drug arsenal against this awful illness
Hi Vickie Welcome! The first two posts under General discussion are a good place to start, the one titled 10 Commandments has links to papers that are very helpful. You can also use the search bar In the upper right and just type “PDF” to find presentations. Hope that helps!
GPs generally know NOTHING about MAV - don’t worry. I have had constant vertigo for over a year, that’s been diagnosed as MAV. To say it doesn’t last more than 3-4 days is crap!! You will get better just stay strong, it takes time. but we all get there x
can you see a neurologist or neurotologist? who diagnosed you with this in the first place and can you go back to them? if not can you find a different gp?
I have to be re referred if I want to see the specialist again. It was my own gp who prescribed me pizotifen not the specialist so its all there for this stupid doctor to read if he bothered to flick back through my notes, but he wouldn’t listen to me.
I came off the pizotifen because all my symptoms were almost gone and my gp suggested I wean off of it as I was gaining weight despite following a healthy diet and exercise programme. I was a almost symptom free for a year till last November when I had a month of constant dizzies.
Today I had to see a new doctor because mine is on holiday and he has basically said that an attack of MAV does not last for more than 3 or 4 days so I can possibly be experiencing that. I told him that the Propranalol is not working and could I possibly go back onto Pizotifen as I had success with that 3 years ago and he refused me. He said there are no treatments for MAV although Cinnarizine is helpful with the bleugh feeling that I always have, and that doing Cooksley/Cawthorne exercises are my best bet even though I said I do VRT but it doesn’t help me.
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Yeah, this pretty much proves this guy is clueless about MAV. The Science-Based Research tab has a lot of articles in there. What’s important to remember is MAV is a variant of MIGRAINE, and MIGRAINE treatments are important - both lifestyle and for many, medication too. I really hope you can get another referral and get to someone who knows how to treat this - you need someone who knows the meds and is willing to work through trials with you.
P.S. I’m not sure if it will make you feel any better, but many sufferers of oddball disorders like this have gone through doctors like this one - either they don’t believe you, write you off as a mental patient, or are clueless as to how to deal with you. Be your own advocate and do not give up until you get someone who will listen and work with you. If you are questioning their advice, you have the right to ask for clarification on the reasons behind their decisions. If you don’t feel you can advocate for yourself, bring someone with you to the appointment who can. Best of luck!
