The Migraine Associated Vertigo Community
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Newbie with VM

Hello fellow sufferers! After eight long weeks I have been diagnosed with VM. What a crazy eight weeks it has been… but I guess it could always be worse (I was relieved to have a perfectly normal MRI of my brain this week). I have a very supportive husband and a six year old son. Thankfully our employment is flexible so I can be in bed if need be. And I have found a wonderful neurologist who is a good fit for me.

My symptoms began at the end of April 2019. Chronic dizziness/vertigo that eases up when I lie down. But recently it’s become worse: walking long distances (like corridors or grocery stores) is nearly impossible without assistance because my balance is so poor. And just this week the feeling of being shoved very hard that some of you have also described has begun. I do find relief on the rowing machine at my local gym and go as often as I can. I start on Topimirate tomorrow and would love to hear any advice anyone has. I’m so grateful to have found this community :heart:.

Rhea, welcome to the forum!
I know you already know by now reading through the forum how fortunate you are… eight weeks to find a doctor, get a real diagnosis and starting medication… incredible!
Couple that with the support of your dear husband and a flexible job… you are certainly blessed! :raised_hands:t2:
The first eight weeks: I think back to that point in time for me, it was the most terrifying time of my life. Absolutely dark, filled with fear and hopelessness. I’m so happy for you to have a path forward so early in your journey and find optimism that some of us wait months or years for. I feel confident that since your MAV was caught early, you will have a speedy recovery.
Never hesitate to reach out to any one of us for support, it’s what we do. Thank God I’ve had the support of my MAV friends here :purple_heart: Best wishes!

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Thank you so much! I first started having transient symptoms two years ago, but they were so mild compared to what’s been happening over the last two months. However, even those mild symptoms triggered me into anxiety. That anxiety was much worse than the dizziness. Im in a much better state now and I feel so fortunate to have found this forum. When I read about other people feeling like they were being pushed, or feeling better when they rode in a car, I realized I was not alone. That felt so good!!! Thank you for welcoming me :heart:.

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Hi Rhea, interesting that you had some symptoms before the crash. I did too, but never asked for medical help and quite honestly I really dreaded Drs! (That’s changed now :blush:) The symptoms were so strange that I couldn’t possibly explain them to my MD. Heavy head, heavy legs, sinus issues, lack of coordination, shimmy head, headache, jumbled words sometimes etc. We did a poll here with the question of onset of symptoms and it seems the majority are like you and I. So pleased you have a path forward! It’s a long, terrible journey but recovery is within sight! :sparkling_heart:
https://www.mvertigo.org/t/mav-symptom-onset/17855?u=naejohn

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Hello, welcome to the board Rhea. I hope our gang here can help you find relief!

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Hello and welcome. I have been on topiramate for over a year and it was a game changer. I started at 12.5 mg at night and stayed with that for a couple of weeks before going up to 12.5mg in the morning as well. My neurologist wanted me to go to 70mg a day but as I was so much better on a low dose I have stayed with that and she is pleased for me that it works so well. I also take 10mg nortriptyline and verapamil to prevent migraine headaches. I was a very entrenched case having been undiagnosed for 11 years so a lot of damage had been done. I am delighted for you that you found a switched on Neuro so quickly. I think it shows that VM is finally being recognized as a proper disease.

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Thank you all so much! Finding this community has been a game/life changer for me. In addition to the warm welcome and the wealth of knowledge, it’s absolutely put to rest any doubts I may have had about my diagnosis. I can’t believe how validating it’s been.

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