As so many of you asked I decided to do another update video of my journey with mav I truly hope these videos help anyone suffering with this condition. :)
I’m 3 years into this condition tomorrow and I’m completely off medication and my symptoms are minimal and infrequent. I agree with what you say about self care. It’s so important. No 2 cases of VM are identical and what works for 1 person won’t necessarily work for another, it’s so important that we keep trying solutions until something works for us. For me I had to change my diet and I take electrolytes and vit D daily. I eat plenty of healthy fats as the brain is made up of 60% fat and I’m not sure what’s working but I am living again. So anyone out there feeling disheartened don’t give up. As always Amy, much love to you, God bless you ❤️❤️❤️
Zandra Woodward that’s amazing zandra! That’s def my dream goal I do believe we can all get there in time . I guess we all have to almost figure out our own bodies I always remember you giving me comfort with the spaced out symptoms so it gives me hope one day I can be off meds not have that bloody symptoms and be able to deal with residual symptoms here and there :) so happy ur doing so well xxx
I’m so glad that you’re sharing!! I think showing the mind and body experience realities is so important 💗 I said the same line of I’d rather lose an arm... glad you’re feeling improvement!
Vestibular Warrior thanks lovely you inspired me you do so much and it helps so many , I am happy to feel improvement here’s hoping my glass window breaks soon :)
Thanks for sharing. I’m 8 months into this condition. It’s life changing, very depressing and it has certainly changed me as a person. The anxiety and my head feeling strange has been difficult. I’ve not taken any meds for this. Just riding it out. Started running after a year. Thanks
Tasneem Akhtar ah it really is life changing I don’t Remeber the person I was before this but I am a better person now . I’m so glad my videos could help and please know it gets better with time x
Thank you so much for posting this video! This has been SO helpful, and it's so nice to have more people out there talking about their journey with rare neurological issues like VM. I wish you the best as you continue to recover!
Thanks for this video. I was initially diagnosed about 11 years ago. First 2 years were terrible. Then I titrated up on Noritriptyline from 10-120mgs...now I have been titrating down. Great until I went from 20mgs to 10 mgs...symptoms have come back. Not atypical and not all symptoms just the whirry head, headache, motion intolerance and almost like my eyes can't process what they are looking at. That aside, I have lived a very normal life for years now. Without many symptoms at all. Thank you for your story.
91...what are you doing to get this far...I've been "playing" with it not having a clue what "it" was and now that I do know, how to I start recovery. Today is Feb 2nd...
@@carikshawn6955 There are tons ive tried & 50% i still use to keep it at bay. My dailys are 50mg Amitriptyline, stretching & deep breathing every night, peppermint oil for temples & back of neck, massages on neck & back, magnesium daily, regular chiropractic sessions, kjowing when to stop & rest, & slowly pushing myself to see what I can do, like baby baby steps, i used to not be able to do supermarkets so i started woth cornerstores & worked my way up to bigger & bigger stores xx
You all appear to be really young while I'm old enough to be your great grandma...so I can't take meds...and this only started 4 years ago...I can't remember ever having any of these symptoms before. I decided I was going to live my life though, but it would be nice not to be "lightheaded/dizzy" every day or walk as though I'm drunk when I don't do that either. GLAD for those of you who are recovering...any info how to do that without meds, that, would be great...happy week.
I'm older too...mine started 18 months ago. I find that if I keep moving and work through the imbalance it helps me..I think of it as training my brain to respond and adjust accordingly. Apparently the brain can be re-trained due to neuroplasticity. There have been a couple of times when I thought I was going to fall over when I was standing still, but I managed to stay upright. The severity balance/gait/rocking dizziness waxes and wanes for me. For some reason Tuesdays are always good days, symtpoms are almost imperceptable. It makes no sense to me..there are other days of the week, Sundays, when I know it will be worse. Once in awhile I'll have 2 'normal' days in a row...
Hey Amy, you look great and I am very happy for you that you finally feel better.I can’t even imagine how you did it , but I can tell you I’ve had about half of your symptoms and it was hell on earth and the same question crossed my mind, what kind of life was it 🙁I ve been diagnosed with vestibular migraine and bppv ( i ve had this bppv in the past but never associated with vm, but now it really makes sense how this happens) after 8 months of suffering ( I did have some weeks when I felt not so bad).I had to identify myself the triggers and mine were work related stress event, too much caffeine & hormones, it really happens every month every mid cycle...I’ve been on nortriptyline 20 mg + beta hystine 16 mg , and this works for now, but I do feel every month that I am getting a very mild attack which goes away in a couple of days, but I can function, work from home etc; I can even go to the gym, do some machines, but not sure what class I should go to because my dr told me no jumping and bending, anyways, I think I ll find something . Thanks for the update ,I ve watched all your videos and I find you do have great information you shared with us, this helped me a lot . Cheers from Canada 🤗🤗⛄️
Anonymus x thanks so much for the kind words and I’m also so glad you’ve found something that works for you ! :) I think hormones are a huge trigger for us ! It’s all about finding what works for each of us altho I do think time does help :) x
I'm doing the carnivore diet, taking 80mg propanolol a day and 50mg sertraline for 3 weeks and attacks have practically stopped completely. I have had ibs for 19 years now and can't eat fruit or much vegetables but I also don't want to stay on the carnivore diet for long as it's incredibly boring and anti social and I don't know what foods I can live on and not trigger migraines but I do want to figure it out soon because I own a busy bar and have a good social life.
It reason is because unless you hit all the axis’s that your body has learned before you had this it hard for the brain to relearn 360 degrees of rotation north south east and west and everything in between
What have you done to recover? I feel the exact same way as you describe! But I have it 24/7 for the past 18 months... it's like I'm on a bad acid trip... my visual snow is TERRIBLE! I'm a single mum to a 4 year old and feel like I'm going to die most days! It's so great to hear that you are feeling better, but did it just happen?
Bayda Faulkner hi bayda god no it didn’t just happen I was very ill for a long time it took time and trying different medication alternative treatments . Have you tried any meds ?
Did your depersonalization n deralization go away im absolutely fed up 😢 so disconnected from me own body and reality, this is unbelievable feel like im giving up
I use to feel the same all the time.400mg of Magnesium religiously every day has made my symptoms disappear. It takes about two months for the effects if the magnesium to take effect. Good luck
I’m 3 years into this condition tomorrow and I’m completely off medication and my symptoms are minimal and infrequent.
I agree with what you say about self care. It’s so important. No 2 cases of VM are identical and what works for 1 person won’t necessarily work for another, it’s so important that we keep trying solutions until something works for us. For me I had to change my diet and I take electrolytes and vit D daily. I eat plenty of healthy fats as the brain is made up of 60% fat and I’m not sure what’s working but I am living again. So anyone out there feeling disheartened don’t give up.
As always Amy, much love to you, God bless you ❤️❤️❤️
Zandra Woodward that’s amazing zandra! That’s def my dream goal I do believe we can all get there in time . I guess we all have to almost figure out our own bodies I always remember you giving me comfort with the spaced out symptoms so it gives me hope one day I can be off meds not have that bloody symptoms and be able to deal with residual symptoms here and there :) so happy ur doing so well xxx
Zandra it sounds like you are on the Stanton Protocol, did you go that route?
I’m so glad that you’re sharing!! I think showing the mind and body experience realities is so important 💗 I said the same line of I’d rather lose an arm... glad you’re feeling improvement!
Vestibular Warrior thanks lovely you inspired me you do so much and it helps so many , I am happy to feel improvement here’s hoping my glass window breaks soon :)
Thanks for sharing. I’m 8 months into this condition. It’s life changing, very depressing and it has certainly changed me as a person. The anxiety and my head feeling strange has been difficult. I’ve not taken any meds for this. Just riding it out. Started running after a year. Thanks
Tasneem Akhtar ah it really is life changing I don’t Remeber the person I was before this but I am a better person now . I’m so glad my videos could help and please know it gets better with time x
Amy Shockett ❤️
@@tasneemakhtar166 How are you now?
Thank you so much for posting this video! This has been SO helpful, and it's so nice to have more people out there talking about their journey with rare neurological issues like VM. I wish you the best as you continue to recover!
Thanks for this video. I was initially diagnosed about 11 years ago. First 2 years were terrible. Then I titrated up on Noritriptyline from 10-120mgs...now I have been titrating down. Great until I went from 20mgs to 10 mgs...symptoms have come back. Not atypical and not all symptoms just the whirry head, headache, motion intolerance and almost like my eyes can't process what they are looking at. That aside, I have lived a very normal life for years now. Without many symptoms at all. Thank you for your story.
Amy you explained this so well!
Can relate to so much of this, im going into my 5th year & im finally about 90% give & take good & bad days xx
91...what are you doing to get this far...I've been "playing" with it not having a clue what "it" was and now that I do know, how to I start recovery. Today is Feb 2nd...
@@carikshawn6955 There are tons ive tried & 50% i still use to keep it at bay.
My dailys are 50mg Amitriptyline, stretching & deep breathing every night, peppermint oil for temples & back of neck, massages on neck & back, magnesium daily, regular chiropractic sessions, kjowing when to stop & rest, & slowly pushing myself to see what I can do, like baby baby steps, i used to not be able to do supermarkets so i started woth cornerstores & worked my way up to bigger & bigger stores xx
You all appear to be really young while I'm old enough to be your great grandma...so I can't take meds...and this only started 4 years ago...I can't remember ever having any of these symptoms before. I decided I was going to live my life though, but it would be nice not to be "lightheaded/dizzy" every day or walk as though I'm drunk when I don't do that either. GLAD for those of you who are recovering...any info how to do that without meds, that, would be great...happy week.
I'm older too...mine started 18 months ago. I find that if I keep moving and work through the imbalance it helps me..I think of it as training my brain to respond and adjust accordingly. Apparently the brain can be re-trained due to neuroplasticity. There have been a couple of times when I thought I was going to fall over when I was standing still, but I managed to stay upright. The severity balance/gait/rocking dizziness waxes and wanes for me. For some reason Tuesdays are always good days, symtpoms are almost imperceptable. It makes no sense to me..there are other days of the week, Sundays, when I know it will be worse. Once in awhile I'll have 2 'normal' days in a row...
Hey Amy, you look great and I am very happy for you that you finally feel better.I can’t even imagine how you did it , but I can tell you I’ve had about half of your symptoms and it was hell on earth and the same question crossed my mind, what kind of life was it 🙁I ve been diagnosed with vestibular migraine and bppv ( i ve had this bppv in the past but never associated with vm, but now it really makes sense how this happens) after 8 months of suffering ( I did have some weeks when I felt not so bad).I had to identify myself the triggers and mine were work related stress event, too much caffeine & hormones, it really happens every month every mid cycle...I’ve been on nortriptyline 20 mg + beta hystine 16 mg , and this works for now, but I do feel every month that I am getting a very mild attack which goes away in a couple of days, but I can function, work from home etc; I can even go to the gym, do some machines, but not sure what class I should go to because my dr told me no jumping and bending, anyways, I think I ll find something .
Thanks for the update ,I ve watched all your videos and I find you do have great information you shared with us, this helped me a lot . Cheers from Canada 🤗🤗⛄️
Anonymus x thanks so much for the kind words and I’m also so glad you’ve found something that works for you ! :) I think hormones are a huge trigger for us ! It’s all about finding what works for each of us altho I do think time does help :) x
I'm doing the carnivore diet, taking 80mg propanolol a day and 50mg sertraline for 3 weeks and attacks have practically stopped completely. I have had ibs for 19 years now and can't eat fruit or much vegetables but I also don't want to stay on the carnivore diet for long as it's incredibly boring and anti social and I don't know what foods I can live on and not trigger migraines but I do want to figure it out soon because I own a busy bar and have a good social life.
It reason is because unless you hit all the axis’s that your body has learned before you had this it hard for the brain to relearn 360 degrees of rotation north south east and west and everything in between
What have you done to recover? I feel the exact same way as you describe! But I have it 24/7 for the past 18 months... it's like I'm on a bad acid trip... my visual snow is TERRIBLE! I'm a single mum to a 4 year old and feel like I'm going to die most days! It's so great to hear that you are feeling better, but did it just happen?
Bayda Faulkner hi bayda god no it didn’t just happen I was very ill for a long time it took time and trying different medication alternative treatments . Have you tried any meds ?
Use CBD oil and stick to the recommended diet. Get the book "heal your headache"
@@amyshockett1662 no i havent tried any meds... well, years ago when my anxiety first started i tried a few but the side effects were unbearable :(
Did your depersonalization n deralization go away im absolutely fed up 😢 so disconnected from me own body and reality, this is unbelievable feel like im giving up
Lovely bushy eyebrows !
dm9542 thanks :)
Vm how many year stay?
I just feel I’m off balance.. what i can do with this feeling?
I use to feel the same all the time.400mg of Magnesium religiously every day has made my symptoms disappear. It takes about two months for the effects if the magnesium to take effect. Good luck
@Dark Dream I'm sorry to hear that.