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for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue.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

Hi frobvt

Just wondering... I have been doing better on the medication and supplements suggested. However, I can have 5 great days, then wake up completely dizzy with that floating experience. I have always exercised and now wondering if that could be a trigger. Do you experience that after exercise as well?
cmg

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Hi cmg,

I'm glad that you're having some better days! No, exercise doesn't do that to me at all. Have you gotten the earplugs yet, are they helping? Also, are you paying attention to the barometric pressure readings? I have more trouble when the pressure goes really low, or else very high. I forgot what medications you're taking. Could they be affecting your blood pressure?

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@frobvt

Hi cmg,

I'm glad that you're having some better days! No, exercise doesn't do that to me at all. Have you gotten the earplugs yet, are they helping? Also, are you paying attention to the barometric pressure readings? I have more trouble when the pressure goes really low, or else very high. I forgot what medications you're taking. Could they be affecting your blood pressure?

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Hi frobvt
I got the air plugs. My app tells me to wear them every day. I am taking an anti-depressant along with magnesium and B2 every night before bed. For the first time in my life, I am having trouble sleeping. Waking around 2 or 3am and not able to get back. I am exhausted at work. I am still very dizzy at night and sometimes for a couple hours during the day. I have to wonder if I will ever be the same again. Just putting one foot in front of the other and plugging along. How long have you had this and is there a promise of ever getting rid of it?

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Have you tried lumbar puncture from your spine? It's been almost 2 years I have similar symptoms, and they diagnosed me with intracranial hypertension, which is a collection of Csf fluid in the brain that causes pressure and nausea etc. No mri or Ct or any other testing were able to confirm it.

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@cmg

Hi frobvt
I got the air plugs. My app tells me to wear them every day. I am taking an anti-depressant along with magnesium and B2 every night before bed. For the first time in my life, I am having trouble sleeping. Waking around 2 or 3am and not able to get back. I am exhausted at work. I am still very dizzy at night and sometimes for a couple hours during the day. I have to wonder if I will ever be the same again. Just putting one foot in front of the other and plugging along. How long have you had this and is there a promise of ever getting rid of it?

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Hi cmg, glad you got the earplugs, are they helping? Because of where we live, the barometric pressure changes a lot.
I basically (sometimes) wear mine during the day, and also usually wear them to bed, 90 % of the time. Another consideration is, you're getting a lot of reminders to wear those earplugs, because your threshold is set to the lowest set point, which is 0.03. I believe WeatherX defaults to 0.08? At any rate, one needs to experiment to see what works best for them.
That's too bad that you're having trouble sleeping. Did you recently start taking this antidepressant? What are the side effects of that? Would one of them be insomnia?
Basically, I had trouble with the vestibular problems for a year or more after I had gotten my concussion, and it has eased off quite a bit.
Since we are all different with different health challenges, and sometimes autoimmune diseases and other issues plus medications, it's hard to say? No, there isn't a promise of getting rid of this per se, that I know of. Only your doctor can help you to fine-tune this, and it takes a bit of commitment such as keeping good logs/diary of all of the measures you are doing, and seeing what is helping, and what isn't? Does that make sense?
Things have mostly diminished for me to where I feel much better physically. But let the barometric pressure get wild and the weather become very changeable, and I will have a little bit of dizziness and trouble.
Please keep me posted, I'm hoping and praying you'll be feeling better as time passes!

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@frobvt

Hi cmg, glad you got the earplugs, are they helping? Because of where we live, the barometric pressure changes a lot.
I basically (sometimes) wear mine during the day, and also usually wear them to bed, 90 % of the time. Another consideration is, you're getting a lot of reminders to wear those earplugs, because your threshold is set to the lowest set point, which is 0.03. I believe WeatherX defaults to 0.08? At any rate, one needs to experiment to see what works best for them.
That's too bad that you're having trouble sleeping. Did you recently start taking this antidepressant? What are the side effects of that? Would one of them be insomnia?
Basically, I had trouble with the vestibular problems for a year or more after I had gotten my concussion, and it has eased off quite a bit.
Since we are all different with different health challenges, and sometimes autoimmune diseases and other issues plus medications, it's hard to say? No, there isn't a promise of getting rid of this per se, that I know of. Only your doctor can help you to fine-tune this, and it takes a bit of commitment such as keeping good logs/diary of all of the measures you are doing, and seeing what is helping, and what isn't? Does that make sense?
Things have mostly diminished for me to where I feel much better physically. But let the barometric pressure get wild and the weather become very changeable, and I will have a little bit of dizziness and trouble.
Please keep me posted, I'm hoping and praying you'll be feeling better as time passes!

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I just want you to know how much I appreciate you taking time to answer my questions in such length. I have benefited from all your information. I had my concussion in November of 22 and symptoms of this began in January. I will try to remain patient and encouraged thru this journey with hopes of being where you are now.
Thanks for always being so prompt in your replies. It helps to discuss with someone who has walked in these shoes.

Cmg

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@cmg

I just want you to know how much I appreciate you taking time to answer my questions in such length. I have benefited from all your information. I had my concussion in November of 22 and symptoms of this began in January. I will try to remain patient and encouraged thru this journey with hopes of being where you are now.
Thanks for always being so prompt in your replies. It helps to discuss with someone who has walked in these shoes.

Cmg

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@cmg have you done any BPPV exercises with a PT? You can do them yourself at home too. Soometimes a concussion knocks the crystals out of place in your ear.

At home, sit on the edge of the bed, looking straight ahead for 30 secons. Turn your head to the right and fall quickly on your left side (speed is important). Your face will be toward the ceiling. Stay there at least 30 seconds and basically until dizziness stop. Quickly return to sitting and looking straight ahead and again 30 seconds or until the dizziness stops. Repeat on the other side.

You can have BPPV on one or both sides and whatever side(s) cause dizziness in this maneuver is/are the side(s) where the crystals are dislodged.

If you have BPPV and do these exercises, you may feel worse for a bit but it works rapidly. Of course dizziness can be in the brain and this won't help. Going to a PT who can evaluate cause is the best course because they can train you on maneuvers but also let you know if they are appropriate.

REPLY
@windyshores

@cmg have you done any BPPV exercises with a PT? You can do them yourself at home too. Soometimes a concussion knocks the crystals out of place in your ear.

At home, sit on the edge of the bed, looking straight ahead for 30 secons. Turn your head to the right and fall quickly on your left side (speed is important). Your face will be toward the ceiling. Stay there at least 30 seconds and basically until dizziness stop. Quickly return to sitting and looking straight ahead and again 30 seconds or until the dizziness stops. Repeat on the other side.

You can have BPPV on one or both sides and whatever side(s) cause dizziness in this maneuver is/are the side(s) where the crystals are dislodged.

If you have BPPV and do these exercises, you may feel worse for a bit but it works rapidly. Of course dizziness can be in the brain and this won't help. Going to a PT who can evaluate cause is the best course because they can train you on maneuvers but also let you know if they are appropriate.

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Hi windyshores

Yes, I have had vertigo several times in the past, gone to PT, and have recovered. I have done those exercises many times at home. This is not vertigo. Its vestibular migraine which is a problem in the brain. It's not sending the correct signal to the inner ear which controls balance and dizziness. At least that's the way it was described to me. I was also told I may have this forever because there is no cure. I just need to learn how to manage it. That is what I am trying to do.

REPLY
@cmg

Hi windyshores

Yes, I have had vertigo several times in the past, gone to PT, and have recovered. I have done those exercises many times at home. This is not vertigo. Its vestibular migraine which is a problem in the brain. It's not sending the correct signal to the inner ear which controls balance and dizziness. At least that's the way it was described to me. I was also told I may have this forever because there is no cure. I just need to learn how to manage it. That is what I am trying to do.

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I also have vestibular migraine and understand. There is BPPV, labyrinthitis, vestibular neuritis, Meniere's and vestibular migraine. Phew a lot to sort out.

I have experienced dizziness w/out nausea, vertigo with continuous vomiting, and a feeling of total lack of balance (and being pulled to the left, strangely)...all very different. With different treatments. I suspect the "vestibular migraine" is a catch all. I have "central vertigo" and "vestibular migraine" on my record which indicate origin in the brain. But I also have some inner ear issues. I stopped worrying about labels!

REPLY
@windyshores

I also have vestibular migraine and understand. There is BPPV, labyrinthitis, vestibular neuritis, Meniere's and vestibular migraine. Phew a lot to sort out.

I have experienced dizziness w/out nausea, vertigo with continuous vomiting, and a feeling of total lack of balance (and being pulled to the left, strangely)...all very different. With different treatments. I suspect the "vestibular migraine" is a catch all. I have "central vertigo" and "vestibular migraine" on my record which indicate origin in the brain. But I also have some inner ear issues. I stopped worrying about labels!

Jump to this post

Are you taking any medication?

REPLY
@cmg

I just want you to know how much I appreciate you taking time to answer my questions in such length. I have benefited from all your information. I had my concussion in November of 22 and symptoms of this began in January. I will try to remain patient and encouraged thru this journey with hopes of being where you are now.
Thanks for always being so prompt in your replies. It helps to discuss with someone who has walked in these shoes.

Cmg

Jump to this post

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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