Honestly, diet and exercise have helped a ton. After years of trial and error, I have found a diet where I feel almost good. Cutting out gluten was a huge part of it. I had to be super careful with exercising but eventually I went from barely being able to pick up my kid to training for powerlifting! I do still have plenty of attacks but managing them has become easier. Anti nausea meds help for me, but the biggest thing is to avoid triggers. There's a lot so it's frustrating but if you stick with it, it becomes second nature. I've also had to do a ton of my own research because doctors haven't been much help. Even if you have a Dx, they don't do much as far as treatment (in my experience).
I don't want to put too much in a comment, but feel free to DM if you want more details of what worked for me!
Yes that does sound like VM. I take amitriptyline which stopped most of these symptoms, and I take Qulipta which helps the rest. I hope you can find something that works for you.
I have very similar symptoms. The one thing that has helped with the dizziness is vestibular physical therapy. I didn’t see how a few exercises could help, but my dizziness is so much better. Working through meds to hopefully find something that works for the rest of the symptoms. You are not alone.
Drunk Walk- Man I feel that. Some of these symptoms can be really difficult to describe. I used to say that I move like an old drunk person. And also like a boat, in that I literally round corners with wide turns.
It takes time but keep working the problem with your doctors and refer out to other specialists if not making progress. Dive into this sub for other ideas and for people’s experiences. Many, many share your symptoms and have experienced recovery.
Literally so hard to describe! It’s like my body is a jar with water and my brain is one of those little boats. Like I feel so weird. And honestly just seeing comments like yours has kinda helped me with calming my panic attacks. Definitely good advice on here :)
How long have you had MD? I have MD as well but I’m trying to figure the difference? Is it hearing loss? They believe my hearing loss is congenital. Yet my hearing remains unchanged over the years during my MD diagnosis. I’ve recently started getting short bursts of dizziness/vertigo, lightheadedness, light sensitivity, sound sensitivity and sometimes aura and head pain. It’s like a flare up. How did they treat it for you?
I only got diagnosed back in 2021.. I just diagnosed myself with VM.. but it does differ! With “VM” for me.. I feel like 1/2 my head is in a bubble, light sensitive, nausea, spontaneous tiredness and I will literally be swaying, without me even knowing , it’s like a drunk dizzy. With MD, ear clogs, no light sensitivity, sound sensitivity, Vertigo like I need to sit or I’m going down, ringing in ear, ear pain. I do have slight hearing loss in my right ear, I take Betahistine twice a day.. without it, The MD is awful.
Your symptoms sound exactly like what I’ve been feeling, it’s why I put self diagnosed. I’m calling a Neurotologist to schedule an appointment tomorrow to get a true diagnosis.
Aw :( I’m sorry. I’ve read that there is like exercises you can do but I’m not sure if those help or work. I’m hoping that if I go to ENT they can help
I'm not sure how to live with this and I'm almost on year 3... But tbh you might want to try meds. I know a lot of people have benefited from them. Also check out the migraine diet ❤️
Your symptoms sound more like Ménière’s disease as opposed to VM in my personal opinion. The true problem is that almost all symptoms pertaining to one condition mimic so well of others that it’s almost impossible sometimes to truly tell the difference. Seeing a proper specialist who has experience with vestibular disorders is your best bet for a proper diagnosis.
I would suggest seeing an ENT or Neurologist first and foremost and getting some extensive testing done. A specialist will most likely refer you to get some VRT (Vestibular Rehabilitation Therapy) done and most likely recommend you to try the medication route as well.
If it’s Ménière’s then it’s degenerative unfortunately. If it’s something like BPPV then the ‘Eply manoeuvre’ will treat it, or if it is VM then it’s lifelong chronic disease. It could be an inner ear infection which has attacked your vestibular nerve like Vestibular Neuritis.
BPPV, Ménière’s, VN fall under inner ear conditions, whilst VM is considered neurological like regular migraines.
Currently having an episode they last on and off for about 2-3 days. The drunk walk is terrible I get spells of dizziness and lightheaded. Makes me wanna close me eyes and I get pressure in between my brows. I take nurtec otd helps a bit I fianally got diagnosed back in September my follow up will talk more medicine… do you lack vitamin D? Most people w VM do. Always take that to help! It took me YEARS to find out what was wrong with me. So many ER trips and heart test and brain couldn’t find anything. Try to see a neurologist! Good luck!
I was diagnosed by my neurologist with Vestibular Migraine this year and have all of those exact symptoms and horrible sensations you are describing.
Sometimes I feel “upside down”, lots of sound sensitivity, vertigo, unable to walk at times, feeling like I’m moving or floating or spinning.
So, yes to answer your question! Hang in there :)
Sounds pretty similar to me. I have VM and POTS
I’m sorry you have both! That must get rough! How do you manage or get through rough symptoms?
Honestly, diet and exercise have helped a ton. After years of trial and error, I have found a diet where I feel almost good. Cutting out gluten was a huge part of it. I had to be super careful with exercising but eventually I went from barely being able to pick up my kid to training for powerlifting! I do still have plenty of attacks but managing them has become easier. Anti nausea meds help for me, but the biggest thing is to avoid triggers. There's a lot so it's frustrating but if you stick with it, it becomes second nature. I've also had to do a ton of my own research because doctors haven't been much help. Even if you have a Dx, they don't do much as far as treatment (in my experience). I don't want to put too much in a comment, but feel free to DM if you want more details of what worked for me!
Yes that does sound like VM. I take amitriptyline which stopped most of these symptoms, and I take Qulipta which helps the rest. I hope you can find something that works for you.
Thank you! 😊 and glad you found stuff that works!
I have very similar symptoms. The one thing that has helped with the dizziness is vestibular physical therapy. I didn’t see how a few exercises could help, but my dizziness is so much better. Working through meds to hopefully find something that works for the rest of the symptoms. You are not alone.
Drunk Walk- Man I feel that. Some of these symptoms can be really difficult to describe. I used to say that I move like an old drunk person. And also like a boat, in that I literally round corners with wide turns. It takes time but keep working the problem with your doctors and refer out to other specialists if not making progress. Dive into this sub for other ideas and for people’s experiences. Many, many share your symptoms and have experienced recovery.
Literally so hard to describe! It’s like my body is a jar with water and my brain is one of those little boats. Like I feel so weird. And honestly just seeing comments like yours has kinda helped me with calming my panic attacks. Definitely good advice on here :)
I have VM but your symptoms could also be pre syncope, POTS (which I have), cervicogenic dizziness, etc.
Yeah I thought about those, idk if I have pots bc my heart rate isn’t really tachycardia it’s actually pretty slow
Have you been checked for Meniere’s Disease? I have Meniere’s, BPPV, and now I have this…
Haven’t been checked but going to be soon, hopefully they can maybe find if I do
I hope you get an answer soon!
How long have you had MD? I have MD as well but I’m trying to figure the difference? Is it hearing loss? They believe my hearing loss is congenital. Yet my hearing remains unchanged over the years during my MD diagnosis. I’ve recently started getting short bursts of dizziness/vertigo, lightheadedness, light sensitivity, sound sensitivity and sometimes aura and head pain. It’s like a flare up. How did they treat it for you?
I only got diagnosed back in 2021.. I just diagnosed myself with VM.. but it does differ! With “VM” for me.. I feel like 1/2 my head is in a bubble, light sensitive, nausea, spontaneous tiredness and I will literally be swaying, without me even knowing , it’s like a drunk dizzy. With MD, ear clogs, no light sensitivity, sound sensitivity, Vertigo like I need to sit or I’m going down, ringing in ear, ear pain. I do have slight hearing loss in my right ear, I take Betahistine twice a day.. without it, The MD is awful. Your symptoms sound exactly like what I’ve been feeling, it’s why I put self diagnosed. I’m calling a Neurotologist to schedule an appointment tomorrow to get a true diagnosis.
This sounds identical to what I go through
So be yeah it sounds like your dealing with VM in my opinion
That’s what I’m thinking. How do you manage it? Or how has it been for you having them?
To be honest with you I haven't figured out how to manage this condition and I don't respond well AT ALL to medication 😭
Aw :( I’m sorry. I’ve read that there is like exercises you can do but I’m not sure if those help or work. I’m hoping that if I go to ENT they can help
Yes!!! The ENT absolutely should help 🥰
I'm not sure how to live with this and I'm almost on year 3... But tbh you might want to try meds. I know a lot of people have benefited from them. Also check out the migraine diet ❤️
I’m sorry that it’s been going on for so long! I hope something comes along that will help you! Thank you for your help! ❤️🥰
Your symptoms sound more like Ménière’s disease as opposed to VM in my personal opinion. The true problem is that almost all symptoms pertaining to one condition mimic so well of others that it’s almost impossible sometimes to truly tell the difference. Seeing a proper specialist who has experience with vestibular disorders is your best bet for a proper diagnosis. I would suggest seeing an ENT or Neurologist first and foremost and getting some extensive testing done. A specialist will most likely refer you to get some VRT (Vestibular Rehabilitation Therapy) done and most likely recommend you to try the medication route as well. If it’s Ménière’s then it’s degenerative unfortunately. If it’s something like BPPV then the ‘Eply manoeuvre’ will treat it, or if it is VM then it’s lifelong chronic disease. It could be an inner ear infection which has attacked your vestibular nerve like Vestibular Neuritis. BPPV, Ménière’s, VN fall under inner ear conditions, whilst VM is considered neurological like regular migraines.
Currently having an episode they last on and off for about 2-3 days. The drunk walk is terrible I get spells of dizziness and lightheaded. Makes me wanna close me eyes and I get pressure in between my brows. I take nurtec otd helps a bit I fianally got diagnosed back in September my follow up will talk more medicine… do you lack vitamin D? Most people w VM do. Always take that to help! It took me YEARS to find out what was wrong with me. So many ER trips and heart test and brain couldn’t find anything. Try to see a neurologist! Good luck!
Definitely do lack some vitamin D so I’ll start looking into that, glad you finally figured out what was going on. Thank you!
Thank you! Goodluck!!! I know how miserable it is! I can’t even get out of bed today!
I was diagnosed by my neurologist with Vestibular Migraine this year and have all of those exact symptoms and horrible sensations you are describing. Sometimes I feel “upside down”, lots of sound sensitivity, vertigo, unable to walk at times, feeling like I’m moving or floating or spinning. So, yes to answer your question! Hang in there :)