Thank you for making this video! Ive had chronic vestibular migraines since January this year and it's had a huge impact on my life. Everyone I speak to doesn't understand and its stopping me from doing so many things.
So amazing you posted this. I am brand new to the diagnosis and my head and ears are killing me and I had never heard of it. I have been in bed so long. Thank you so much. Diagnosed probably when you posted. I am thankful to you for the follow ups. Thank you so much. I can’t drive during the day. Only at night. And stores are awful. The lighting at the stores and my vision is awful. The vision the dots and my head hurts when I move my eyeballs. I am hoping to get it under control before the rocking starts. I have swirling. And falling.
Thank you for this video. This is how I feel too. I've been experiencing this on and off for around 6 years. I have blocked left ear feeling, pressure in left side of the head, tinnitus, crossed eyes occasionally, floaty feeling, feeling tipsy/like I have a hangover, knocked sideways, bright lights especially when driving at nights and long distances are horrible and makes my eyes and head feel like they are somewhere else! Over the 6 years I have had periods of remisson...i was in remission for 2 years once and it was amazing. There is hope. Now trying out medication topiramate which seems to be keeping symptoms low for now
Hi!! I haven’t watched all your videos but I’ve seen a couple... you caught my attention when you were talking about all the symptoms that I was feeling. I felt like “wow!! Someone else can relate!” I was so scared taking migraine medication and doing everything I can to get back to normal... the i my thing that helped me was going to the chiropractor! So crazy! Def check one out if you can cant hurt!!!
I completely agree. Migraine seems like a weird diagnosis when you are getting dizzy and don't have a headache at all after each episode. (I do get headaches tho) Tonight I threw up for the first time after a dizzy episode. (Been dealing with his 1 1/2 years now.) Thought I was doing so well as it was about 2 months since my last episode but I kinda pushed my luck in the last two days and ate foods that were triggers for me. Your videos have helped me not feel so alone in this :)
I am going through this right now I have 4 babies and it is so hard to deal with I get stuck in my head and feel detached. Today is day 78 for me I have "attacks" multiple times a day where my vision goes completely blurry muscles start feeling weak the room is completely spinning no one even my husband understand what's going on 😔 praying this let's up.
Going through the process at the Kansas University Medical Center. My Otolaryngologists has ruled out BPVVP and Ménière’s disease and nest stop neurology and MRI. My question is what to use for breakthrough Pain. The headaches are earth shattering and then I walk into walls lose my hearing and vomit. The have tries Hydorodone for years now but I feel I have hit the threshold. Should I have them move my up to stronger pain meds?
Hi Amy, I suffer the same visual and derealised/spacey stuff as you ( we spoke over FB). I recently emailed Dr.Goadsby at Kings College regarding this and he responded immediately with some studies to present to my Neuro to help define my diagnosis (ie do I also have Visual Snow Syndrome or is it definitely part of my migraine). He is a migraine specialist, might be worth dropping him a line. I am not trying to say you have VS but his work and guidance might be useful to you. I wanted to ask if you also suffer tinnitus?
Sara Clarke oh wow Sarah that’s amazing would you mind emailing me what he sent ? I’d love to read it ! I get so much visual snow it’s the worst everything is grainy ! I have heard of dr goadsby :)
I’ve only just seen your reply Amy. I’m happy to forward the paper he sent. There’s also a conference vid here on UA-cam where he talks about Visual Snow...just type in Prof Goadsby VS...there’s quite a few vids 👍🏻
I think I have this. I cannot afford not to work because I'm in debt. I used to be on Klonopin (2 years ago) and Amitriptyline (1 year ago) was fine and had occasional benzo symptoms but came down with a cold 5 weeks ago and started getting headaches, balance problems, light sensitivity, auras on and off, and occasional nausea. I think lack of sleep makes me worse every week. Usually I come home on a Friday tired and wake up the next day being worse. The severity varies from day to day and week to week. I'm wondering if I'm gonna have to go back on Amitriptyline. I'm totally against going back on benzos. Those things are terrible and not worth the awful withdrawal and extended and crazy side affects. Coming off amitriptyline was way way easier
Hey i have vestibular migraine and i have depersonalization through it, regardless of the vestibular migraine going away will this depersonalization go away or not? Its an absolute night mare am loosing hope 😔💔 do you know anything i can do etc? Have no support
There's always hope 🙏 I've had vestibular migraines for the past 3 yesrs and I've just come out of a 15 month remission period, which was incredible. Unfortunately, I have relapsed quite badly in the last couple of months as I think I've built up a tolerance to the Venlafaxine (started at 37.5mg, then upped to 75mg after first attack in March). I'm going to try a different medication to see if that helps and I think that experimenting with different meds is a bit part of what we have. Wish you the best of luck.
@@laurenbaldwin6068 I felt like I was totally back to normal until recently when I relapsed. I have severe dizzy/vertigo attacks to the point where I can't even walk, crawl or lift my head up. The vertigo brings on intense disorientation and vomiting that lasts for a number of hours. The Venlafaxine really helped me and seemed to stop the vestibular migraines almost overnight so I would definitely recommend it. Not sure what I'm going to do now as I seem to have built up a tolerance to it.
@@laurenbaldwin6068 no I've never had any kind of disassociative symptoms thankfully, but the acute vertigo and vomiting is enough! What symptoms do you suffer with?
feeling like my brain is being suffocated.. yes I describe my brain fog like that too, the head sensation is hard to describe in anotherway
Thank you for making this video! Ive had chronic vestibular migraines since January this year and it's had a huge impact on my life. Everyone I speak to doesn't understand and its stopping me from doing so many things.
Did it get better?
So amazing you posted this. I am brand new to the diagnosis and my head and ears are killing me and I had never heard of it. I have been in bed so long. Thank you so much. Diagnosed probably when you posted. I am thankful to you for the follow ups. Thank you so much.
I can’t drive during the day. Only at night. And stores are awful. The lighting at the stores and my vision is awful. The vision the dots and my head hurts when I move my eyeballs. I am hoping to get it under control before the rocking starts. I have swirling. And falling.
My condolences for your loss. And so happy you are training.
Your videos are helpful. Thx
Thank you for this video. This is how I feel too. I've been experiencing this on and off for around 6 years. I have blocked left ear feeling, pressure in left side of the head, tinnitus, crossed eyes occasionally, floaty feeling, feeling tipsy/like I have a hangover, knocked sideways, bright lights especially when driving at nights and long distances are horrible and makes my eyes and head feel like they are somewhere else! Over the 6 years I have had periods of remisson...i was in remission for 2 years once and it was amazing. There is hope. Now trying out medication topiramate which seems to be keeping symptoms low for now
Sounds like great progress.
Roshan Wright I truly hope so :)
Hi!! I haven’t watched all your videos but I’ve seen a couple... you caught my attention when you were talking about all the symptoms that I was feeling. I felt like “wow!! Someone else can relate!” I was so scared taking migraine medication and doing everything I can to get back to normal... the i my thing that helped me was going to the chiropractor! So crazy! Def check one out if you can cant hurt!!!
Boushy do you feel any better?
I completely agree. Migraine seems like a weird diagnosis when you are getting dizzy and don't have a headache at all after each episode. (I do get headaches tho) Tonight I threw up for the first time after a dizzy episode. (Been dealing with his 1 1/2 years now.) Thought I was doing so well as it was about 2 months since my last episode but I kinda pushed my luck in the last two days and ate foods that were triggers for me. Your videos have helped me not feel so alone in this :)
Chrissy P , do u feel better? Pls say yes , coz I’m loosing hope :( also were your symptoms 24/7?
I am going through this right now I have 4 babies and it is so hard to deal with I get stuck in my head and feel detached. Today is day 78 for me I have "attacks" multiple times a day where my vision goes completely blurry muscles start feeling weak the room is completely spinning no one even my husband understand what's going on 😔 praying this let's up.
So happy to watch your update!
Going through the process at the Kansas University Medical Center. My Otolaryngologists has ruled out BPVVP and
Ménière’s disease and nest stop neurology and MRI. My question is what to use for breakthrough Pain. The headaches are earth shattering and then I walk into walls lose my hearing and vomit. The have tries Hydorodone for years now but I feel I have hit the threshold. Should I have them move my up to stronger pain meds?
I recommend everyone a functional medicine neurologist. With neuroplasticity you can get better.
I feel exactly how you feel its aweful full of cotton and auras pain not so much....
Did you do vestibular rehab? It seems to really help to retrain the brain.
condoz2009 I tried it 3 times it didn’t do much and I got signed off each time
can u also explain your symptoms
and the steps u did to sort it :)
Ash Sp hi ash please look back at all my videos they explain it pretty well :)
Hi Amy, I suffer the same visual and derealised/spacey stuff as you ( we spoke over FB). I recently emailed Dr.Goadsby at Kings College regarding this and he responded immediately with some studies to present to my Neuro to help define my diagnosis (ie do I also have Visual Snow Syndrome or is it definitely part of my migraine). He is a migraine specialist, might be worth dropping him a line. I am not trying to say you have VS but his work and guidance might be useful to you. I wanted to ask if you also suffer tinnitus?
Sara Clarke oh wow Sarah that’s amazing would you mind emailing me what he sent ? I’d love to read it ! I get so much visual snow it’s the worst everything is grainy ! I have heard of dr goadsby :)
I’ve only just seen your reply Amy. I’m happy to forward the paper he sent. There’s also a conference vid here on UA-cam where he talks about Visual Snow...just type in Prof Goadsby VS...there’s quite a few vids 👍🏻
@@griggleyrock666 Hi Sara, any chance of including the references for these papers so I can look them up? Thanks!
I think I have this. I cannot afford not to work because I'm in debt. I used to be on Klonopin (2 years ago) and Amitriptyline (1 year ago) was fine and had occasional benzo symptoms but came down with a cold 5 weeks ago and started getting headaches, balance problems, light sensitivity, auras on and off, and occasional nausea.
I think lack of sleep makes me worse every week. Usually I come home on a Friday tired and wake up the next day being worse. The severity varies from day to day and week to week. I'm wondering if I'm gonna have to go back on Amitriptyline.
I'm totally against going back on benzos. Those things are terrible and not worth the awful withdrawal and extended and crazy side affects. Coming off amitriptyline was way way easier
Hey i have vestibular migraine and i have depersonalization through it, regardless of the vestibular migraine going away will this depersonalization go away or not? Its an absolute night mare am loosing hope 😔💔 do you know anything i can do etc? Have no support
There's always hope 🙏
I've had vestibular migraines for the past 3 yesrs and I've just come out of a 15 month remission period, which was incredible.
Unfortunately, I have relapsed quite badly in the last couple of months as I think I've built up a tolerance to the Venlafaxine (started at 37.5mg, then upped to 75mg after first attack in March).
I'm going to try a different medication to see if that helps and I think that experimenting with different meds is a bit part of what we have.
Wish you the best of luck.
@@chrisfitch6450 oh great, what we're ur symptoms? R u totally. Back t normal now x
@@laurenbaldwin6068 I felt like I was totally back to normal until recently when I relapsed.
I have severe dizzy/vertigo attacks to the point where I can't even walk, crawl or lift my head up. The vertigo brings on intense disorientation and vomiting that lasts for a number of hours.
The Venlafaxine really helped me and seemed to stop the vestibular migraines almost overnight so I would definitely recommend it.
Not sure what I'm going to do now as I seem to have built up a tolerance to it.
@@chrisfitch6450 yeah, did u feel like fake like you weren't real and stuff!
@@laurenbaldwin6068 no I've never had any kind of disassociative symptoms thankfully, but the acute vertigo and vomiting is enough!
What symptoms do you suffer with?
The 'top rated' doctors I've seen are the ones with the biggest egos, worst bedside manner, least caring.
Are MAV and Meniere same?
Can you say difference between them?
Can we heal from this ?
Jay Banks I pray to god we can. I’m 10 months in