Vestibular migraine: What symptoms do you experience?

Posted by klhe @klhe, Aug 12, 2018

good day members,

Johns Hopkins diagnosed me with vestibular migraine a little over one year ago. Prior to that no one knew what I had and I saw ENTs, neurologists, and many other Dr.s. MRI of close to two years ago shows all is normal. However, despite a respite of feeling almost normal for three months while taking a new medication (Effexor extended release at 75mg.) all of my symptoms came back full force for what I call episodes, at least once a week, and lasting up to three 3 days in bed. My symptoms for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue. I can feel like a pressure in my head at times. I have not lost cognitive functions: that only occurred when I took Topiamate. My internist wants me to see a specialist at the Mayo Clinic, but I wonder if anyone else has experienced what my Hopkins Dr. calls very atypical VM symptoms?

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@cmg

frobvt,
Is it against rules here to exchange phone numbers? I really would love to chat. Each day brings new surprises and i am losing faith in my neurologist..
I get it if you are not comfortable
cmg

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Hi cmg,

I'm not sure what the rules are here? Of course, I would love to give you my phone number so that we could talk.

And, I see that windyshores said we could share private info. As soon as I figure that out, I'll do that.

So sorry that you're having all these symptoms!

Hang in there, hopefully, we'll chat soon!

frobvt

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Weather change: temp went from 50's to 80's and going back down again in one day. Migraine starting, fingers swollen, and I will be dizzy probably. I need to move to a different climate!

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@frobvt

Hi cmg,

I'm not sure what the rules are here? Of course, I would love to give you my phone number so that we could talk.

And, I see that windyshores said we could share private info. As soon as I figure that out, I'll do that.

So sorry that you're having all these symptoms!

Hang in there, hopefully, we'll chat soon!

frobvt

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Thanks... Ill check out as well. I hope one of us fugures out how to do the private message.
Appreciate it
cmg

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@frobvt

Hi cmg,

Thank you, you're very welcome! When I was 6 months post-concussion, my head still felt like I had scrambled eggs for brains! Sorry to say that, but it's true. It took me most of a year before I started really feeling pretty strong physically, and more like myself. The dizziness did subside after awhile, now it's mostly under control. A slight bit of dizziness comes from the migraines. And I was told that I only had a mild concussion? I don't use prescriptive drugs from a doctor, I use small amounts of medical marijuana for this, and other challenges I have.
Please keep your chin up, things will get better!

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Hi frobvt,
At the top of this page, there's a way to send a private message. I just sent one to you with my phone number. I'll be around most of this weekend. When the time is good for you, if you want, you can call.

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@cmg

Hi frobvt,
At the top of this page, there's a way to send a private message. I just sent one to you with my phone number. I'll be around most of this weekend. When the time is good for you, if you want, you can call.

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Cmg, that's great! I'll take a look, and I definitely will call.

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Anyone suffering from vestibular migraines? Trying to confirm my diagnosis and share symptoms

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@terryjoe

Anyone suffering from vestibular migraines? Trying to confirm my diagnosis and share symptoms

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God Bless You! I have had migraines (not vestibular) all my life...since a child. I have to honestly say, I believe taking B2 daily has helped me greatly. I know, it sounds to good to be true. I started it 3 months ago and I have had the least amount of migraines this summer that I have had in a long time. Usually, the high humidity like this summe is brutal for me and migraines. I also take magnesium 200 mg daily which is supposed to help with migraines. Talk with your doctor about the supplements first. Praying for you. Migraines are miserable!

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@covidstinks2023

God Bless You! I have had migraines (not vestibular) all my life...since a child. I have to honestly say, I believe taking B2 daily has helped me greatly. I know, it sounds to good to be true. I started it 3 months ago and I have had the least amount of migraines this summer that I have had in a long time. Usually, the high humidity like this summe is brutal for me and migraines. I also take magnesium 200 mg daily which is supposed to help with migraines. Talk with your doctor about the supplements first. Praying for you. Migraines are miserable!

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Thank you so much for your input. I have just recently noticed that humidity and rain is worse for me!
Thanks for your prayers…

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@terryjoe

Anyone suffering from vestibular migraines? Trying to confirm my diagnosis and share symptoms

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Try physical therapy. They can help you with balance and stretch and massage your neck.

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@terryjoe

Anyone suffering from vestibular migraines? Trying to confirm my diagnosis and share symptoms

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Thanks. Starting tomorrow

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