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for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue.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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@frobvt

For cmg:

I accidentally hit the reply button and it got sent out without me finishing my reply, so I do apologize.

The WeatherX earplugs helped to lessen the severity of them; and now, I only get a bit of dizziness from time to time. (I still get one or two small migraines a week, and occasionally have gone a couple weeks or more without one). I'm a bit older than you, I'm 71 years old.

Basically, I ordered the ones that have the flat tabs, and I wear them to bed, almost every night.

Using those daily, in conjunction with the app that is free to download from the Play Store, helps me to keep track of the barometric pressure changes, and that's what works for me. That, and being strict with avoiding my known triggers. Staying well-hydrated with water too.

I have faith you will be able to work with your doctors, track what you are eating, and also the barometric pressure.

I'll be hoping and praying that you'll find some good solutions to help you live your life as you wish!

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Wondering where to get those earplugs.

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You can order them at weatherx.com, or else at amazon.com.

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@windyshores

@fluffy56 I get those ( and other types of migraines). Part of my visual field goes missing and then the electric wave patterns. I don't worry about them too much but if they are frequent- like once a week or more- there are medications that can help. Do you have a neurologist?

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windy shores . Thank you. Yes, I have a neurologist. He told me to go live my life when I pressed him about additional medication. Do you take a med that helps you prevent them?

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@fluffy56

windy shores . Thank you. Yes, I have a neurologist. He told me to go live my life when I pressed him about additional medication. Do you take a med that helps you prevent them?

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No but mine are not that frequent. My daughter had them all the time and tried Topamax, Depakote and she finally ended up with Lamictal.

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@fluffy56

windy shores . Thank you. Yes, I have a neurologist. He told me to go live my life when I pressed him about additional medication. Do you take a med that helps you prevent them?

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My neurologist prescribed 10 mg of desipramine at bedtime. It has not prevented them. It has slightly decreased the dizziness. She mentioned there were others we could try. If she ever told me to go live my life, I'd be looking for a different doctor.

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@cmg

frobvt,
So grateful for your reply. Yes, I have been keeping a journal of food and drink intake and trying to eliminate one thing at a time. I have had no alcohol since January, no chocolate for a week, no caffeine for 5 days. I don't know how long these things typically take to get completely out of your system. I am on 7 days of the medication. I have not seen a tremendous difference. My neurologist wants me to go two weeks before we judge if it's working for me.
I had a concussion in November of 2022 and all this started in January. I am not sure it is related but I can't rule it out.
I wondered if there was a pill you could take on the onset. There are mornings I wake up clear headed, however by 11 am my ears are ringing, and the dizziness begins. I remain unbalanced for the rest of the day. On a good day with just slight symptoms, nighttime always brings on the symptoms. I find myself in bed by 8pm most of the time. I did PT , learned exercises to force myself to get dizzy, and did not see much of a difference.

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Hi cmg,

I still eat chocolate, only in modern amounts- but keeping a food diary may help you discover what your triggers are? I don't consume alcohol because it causes migraines, and I can't digest it well. It does take a couple of weeks of eliminating foods to see any countable differences, if there are any. If I start to get ringing in my ears, I look to the Weatherx migraine app; and surely enough, the barometric pressure is either rising or dropping. That's when I insert the earplugs for two to four hours, depending on my symptoms.
Taking a pill? Instead, I reach for the WeatherX earplugs, that help to moderate the barometric pressure changes slowly. Also, it makes sense that it could be possible and probably is due to your concussion.

It took me about a year to fully recover from mine. I did notice that I had the vertigo problems after my concussion, and that's when I discovered the WeatherX earplugs. If you could track the barometric pressure, there might be a correlation between that and your vertigo? If and when you decide to get the earplugs, they also have a free app and an alert system that will let you know when to put the earplugs in. These earplugs are good in helping to alleviate migraines, (for me), or else greatly reduced them, and it has helped me tremendously with vertigo. If I should feel any type of vertigo, I will put the earplugs in for 3 hours . They are under $20, it's worth a try! I rarely get vertigo at this point and manage it by also drinking a little extra water.

Hoping for the best for you, please keep in touch!

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@frobvt

Hi cmg,

I still eat chocolate, only in modern amounts- but keeping a food diary may help you discover what your triggers are? I don't consume alcohol because it causes migraines, and I can't digest it well. It does take a couple of weeks of eliminating foods to see any countable differences, if there are any. If I start to get ringing in my ears, I look to the Weatherx migraine app; and surely enough, the barometric pressure is either rising or dropping. That's when I insert the earplugs for two to four hours, depending on my symptoms.
Taking a pill? Instead, I reach for the WeatherX earplugs, that help to moderate the barometric pressure changes slowly. Also, it makes sense that it could be possible and probably is due to your concussion.

It took me about a year to fully recover from mine. I did notice that I had the vertigo problems after my concussion, and that's when I discovered the WeatherX earplugs. If you could track the barometric pressure, there might be a correlation between that and your vertigo? If and when you decide to get the earplugs, they also have a free app and an alert system that will let you know when to put the earplugs in. These earplugs are good in helping to alleviate migraines, (for me), or else greatly reduced them, and it has helped me tremendously with vertigo. If I should feel any type of vertigo, I will put the earplugs in for 3 hours . They are under $20, it's worth a try! I rarely get vertigo at this point and manage it by also drinking a little extra water.

Hoping for the best for you, please keep in touch!

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Thank You very much for this information. I have been tracking food intake now for 3 weeks. It may sound crazy, but the day after I had indian food, I was so clear in the head. I know incorporate cumin, tumeric, and ginger into my prepared mails at home. I also have made curry. It's not as good as the restaurant but not too bad. I take ginger, magnesium, B2, turmeric and other supplements. I am going to look into those ear plugs because my ears constantly ring.
Thank You for your help.

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@cmg

Thank You very much for this information. I have been tracking food intake now for 3 weeks. It may sound crazy, but the day after I had indian food, I was so clear in the head. I know incorporate cumin, tumeric, and ginger into my prepared mails at home. I also have made curry. It's not as good as the restaurant but not too bad. I take ginger, magnesium, B2, turmeric and other supplements. I am going to look into those ear plugs because my ears constantly ring.
Thank You for your help.

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Hi cmg,

Isn't that something? I also take Meriva Turmeric, Ginger, Vitamin B2, Magnesium, as well as some other common supplements, daily. I take the supplements, (capsules), Ginger and turmeric and vitamin B2. My Magnesium is in pill form. I don't believe I will get full benefits of the aforementioned unless taken by capsule or pill. Of course, I love spices, and still eat those in dishes that I make.

Please do get the earplugs and try them- they may help you more than you know! As I've mentioned before, they won't stop every migraine. When my ears start ringing, I check the WeatherX app on my phone, and that will let me know exactly what is going on with the barometric pressure. It's then I insert the earplugs, anywhere from 2 to 4 hours, depending upon the pressure change. However, if you suffer from barometric pressure changes and you have increased sensitivity in your brain from getting a concussion, it makes sense to try the WeatherX earplugs. Also, I don't wear those earplugs just five times and buy another pair as they suggest on their website. Too expensive. I take a moistened Q-tip and wipe them down, and have worn them for 2 to 3 months before I buy another pair. Oh, I always keep an extra pair on hand! I don't do well with traditional medicine, so Gabapentin didn't work for me, and Topamax nearly wrecked me! I'm so happy that I found these earplugs, they have really helped me tremendously!

You're entirely welcome, glad that I can be of help!

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Cmg,

One more thing:

I have found that I can still hear things going on around me and people speaking, etc. The WeatherX plugs only reduce hearing by 20 decibels so that's not much.

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@frobvt

Cmg,

One more thing:

I have found that I can still hear things going on around me and people speaking, etc. The WeatherX plugs only reduce hearing by 20 decibels so that's not much.

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I was wondering that! Glad I can wear at work if I need to. I ordered the plugs this morning. I'll do ANYTHING to get my life back. So, I put them in on the onset of my ears ringing? That happens every day sometimes all day sometimes just a few. I cannot wait to try them. Do I have to remove them slowly as to not blow my mind! haha
Thanks so much frobvt.

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