Was diagnosed with vestibular migraine Oct 23. Vertigo really bad. Tried doctors of no proper diagnosis. Tried the Optometrist as I was suffering visual disturbances. I was then referred to the Ophthalmologist who knew from his testing that I have Vestibular Migraine. He then referred me to a good Vertigo Physiotherapist. It was wonderful to finally be diagnosed properly and not feel like a freak. She put me through exercises which really helped. I have found that playing an instrument seems to help with the Vertigo and headache. I did try those meds through a neurologist to help with Vestibular Migraine but made me worse. Now I just take vitamins B2, Magnesium Glycinate, D3, CoQ10 and Ginko Biloba everyday. Walks really help as well. I live with it everyday and it is a battle. Blue light removal glasses have also helped me. Removing the LED light bulbs in my rooms calms my brain and doesn't cause the light sensitivity. That hurts.
Yes, the diagnosis is such a relief isnt it. I am so pleased to read you have made osme good progress. Yes, I hate certain lights too! Good move to get rid! Ps sorry for the late reply, this comment didnt show up on my timeline.
You have no idea how much your videos have helped me…since late 2022 I’ve experienced chronic migraines with almost zero pain - it’s mostly all strange sensory symptoms (anxiety, motion and light sensitivity and paralyzing derealization and exhaustion). I spent all of 2023 trying to find answers from different doctors and specialists. I finally got a diagnosis for migraines, but felt completely misunderstood by everyone around me until I found your videos. To hear you describe everything I couldn’t articulate (but relate to 100%) felt like someone just saved my life. Thank you! Keep up the good work and take care of yourself!
I have been dealing with a migraine for 3 months now. I have had dizziness, light headedness, brain fog, sound sensetivity, etc. There's also certain places where i feel more dizzy then others. I turn my head right or left or even up and down and feel more light headed depending on where i am. I even went to my regular doctor a few months ago and she seemed to underestimate my issue, said i should drink more water. I know water is important but i also knew that water wasn't gonna solve my problems.
@@thebluntyorkshireman5161 I can. Based on my symptoms though would you say this is vestibular migraine? And for these symptoms do you know what the typical treatments would be?
Hi Matt! Thank you for this video. I was diagnosed with VM in June 2022. Was doing better, but recently caught Covid again in Dec-23 and then another bad cold in Jan-23. One of my main symptoms is this specific sensation/uncomfortable feeling in my eyes when I try to focus on anything. It feels like wearing the wrong glasses (even though I don’t wear or need them!). As if my eyes are weighted. It makes reading almost impossible. Did you experience anything like that?
Thank you so much for responding! Yes that’s exactly it! Did you find anything that helped? I’m massively struggling at the moment with the worsening of symptoms😔
I hv VM and my vision is wierd like that too. I’ll be in my car, stopped and looking back to see when I can enter the lane and the things behind me feel like they are slowly moving and are not stable and I can’t stop it. Like a things I’m looking at are on a merry go round.
Vision difficulties are my first symptom that the VM is on its way. I’m learning to take my medication then and there, and not wait and see what happens . I only suffer more. Speech issues here as well, I’m with you guy. Scary isn’t it?
Fellow Sheffielder, thanks for the video. Did you wear sunglasses indoors when your photophobia was at its worst, I've read on the specsavers website that it can make things worse but everyday I'm existing with the blinds closed and no indoor lights on, during a mild headache sunglasses calm it down considerably, feel like I'm existing as a mole. Also you mentioned an ear test, did you pay for one of those yourself at Boots for example?
Hello fellow Sheffieldier! How nice to hear from someone in the same city! Yes, I did wear shades inside. I felt silly at first but whatever works! I doubt spec savers know much about VM. I paid for the hearing test, but a Boots one would be fine. Add me on Instagram? Cordelisssmile x
I know you mentioned about how it makes you upset when you connect with people and they stop talking. But I’m 10 months into this hell and need someone to talk to
Hi, really appreciating your videos! I’m so confused as to whether I have VM?! I definitely had a BPPV attack 14 weeks ago as I tested positive in the Dix Hallpike and the Epley did help. However I have lingering dizziness that occurs when I’m over stimulated, say at work or do too much movement. My physio said because I react to chocolate, caffeine and cheese that it’s probably VM. However I’m not light or sound sensitive. But when I’m having a spell I do get shocked by sound! Also my head feels like it’s thrumming with electricity, my vision gets worse and I get a headache over my eyes and a spot at the back of my head, always on the left! 🤷♀️ My left arm seems to go weak too but when I test my grip, it’s not! Seeing my GP next week to discuss VM and will asked for a private referral. Who best to ask for, an ENT or neurologist? My physio replied when I said I felt out of breath during my worse time, was that the vagus nerve is affecting by vestibular symptoms so that can cause fatigue and breathlessness. Apologies for the long post, as you can appreciate vestibular symptoms aren’t straight forward! 🤦♀️
Hi Louise. Firstly, sorry for a late reply. Your comment didnt show up on my notifications. Hmm - it sounds like you might have VM. You dont have to have all the classic symptoms - for example I never head any hearing related issues (many do). Really interesting on the breathing as I have experiened breathing problems too - and the vagus was mentioned to me once by a paramedic. I am on Insta under @cordeliassmile if you want to chat about it.
South Yorkshire lass here… so happy to have found your channel! I have been suffering from chronic dizziness and head pressure (and many other fun symptoms) for around 6 months now. I was referred to ENT at Hallamshire hospital in Sheffield 3 months ago who diagnosed Vestibular Migraines and put on a dose of 120mg of propranolol but it hasn’t helped. Finally got my follow up appointment this weekend and they are now trying me on a different medication and are referring me to neurology but essentially said ‘good luck with the waiting lists’ and they will call me in 3 months while I am waiting to see how I am ‘getting on’. Which tells me the waiting list for neurology will be longer than that. Did you go private at all? I don’t feel like I can just wait months and months to be seen (not because I think I should be seen above others I just mean because I can’t live like this!). I am also seeing two different physios privately - one is a vestibular specialist and the other is working on my neck and spine etc. Any tips would be appreciated! ❤
Hi Michelle. I have been on amitryptaline many years ago, but that was before I was diagnosed. Amis have helped a lot of others so they are one I'd recommend trying too.
You are a legend 🙌. The information I've got from your videos has been like a dose of sertrline. 7 weeks of hell so far, and I was misdiagnosed with labyrinthitis, but eventually, the docs got it right. Have a great new year, and thanks again 😊
@@sandrawood7710 yes I am on meds permanently. It happened because I was in an environment full of triggers. However i was fine after half an hour which I believe is down to my meds and other mitigations. 😊
So interesting to hear your VM triggers blood pressure issues too - I thought I was the only one! I also get the face twitching, breathing, and speech issues. Not fun. Glad you are managing well with medication. Thanks for the update, hope you have a happy new year! 😊
Hey Matt, curious to know if you ever dealt with new symptoms after your really bad go of it. I started getting just dizziness in March of 2023, which turned into balance issues too so we started Nortriptolyne 20mg. Dizziness got much more manageable and balance got pretty close to normal but then in September I started getting this dropping sensation. Doubled the dose and started propranolol and things started to look pretty good for about a month but on Christmas Day (supposed to be a good day lol) I started getting more extreme vertigo and motion sensitivity. Died down for about a week and yesterday and today seems like they have been the worst vertigo days iv ever had. Just wondering if the cyclical nature with more extreme symptoms after you seem to be healing was something you saw. You rule man. One of the first videos that really put me at easy when all this started.
Ah cheers Trent - glad to have helped. This hasn’t really happened to me bar the half hour relapse where I got a host of symptoms. Maybe you hit your threshold which you normally stay below? The excess of Christmas maybe?
Used to take prooanolol it was good but makes me so sleepy. Also it gives me breathing issues so had to get off if it after years of taking it. On nurtec now along with a triptan. Works great. Mine is very food induced so i have to be careful with my diet. Had this since i was a kid but diagnosed as an adult.
I went swimming today, with ear plugs, and it triggered severe vertigo symptoms for around one hour but I wasn't getting any anxiety and felt comfortable with it. Is that a good thing to do daily to treat what I think is vestibular migraines? Thanks 🙏
@@thebluntyorkshireman5161 I've been taking Sertraline and propranolol for around 6 weeks now and definitely the vestibular migraines are going away but I do feel far too relaxed. Do you eventually get used to it or will it always be the case?
Well the diagnosis is a good thing now as you can get on the road to treatment! I am sure some folks do get headaches with VM - mine was more of a pressured head. :)
@@thebluntyorkshireman5161 thanks, I am on my third week of Sertraline and propranolol now. I started the carnivore diet and feel so much better just like the last time I did it several months ago. I just don't want to stay on it though as I own a bar and eating meat only is incredibly boring and anti social
Thank you for replying, did your doctor raised the propranolol at some point? I'm currently at 40 mg/day but think I'll need more to feel better about the symptoms
Was diagnosed with vestibular migraine Oct 23. Vertigo really bad. Tried doctors of no proper diagnosis. Tried the Optometrist as I was suffering visual disturbances. I was then referred to the Ophthalmologist who knew from his testing that I have Vestibular Migraine. He then referred me to a good Vertigo Physiotherapist. It was wonderful to finally be diagnosed properly and not feel like a freak. She put me through exercises which really helped. I have found that playing an instrument seems to help with the Vertigo and headache. I did try those meds through a neurologist to help with Vestibular Migraine but made me worse. Now I just take vitamins B2, Magnesium Glycinate, D3, CoQ10 and Ginko Biloba everyday. Walks really help as well. I live with it everyday and it is a battle. Blue light removal glasses have also helped me. Removing the LED light bulbs in my rooms calms my brain and doesn't cause the light sensitivity. That hurts.
Yes, the diagnosis is such a relief isnt it. I am so pleased to read you have made osme good progress. Yes, I hate certain lights too! Good move to get rid! Ps sorry for the late reply, this comment didnt show up on my timeline.
You have no idea how much your videos have helped me…since late 2022 I’ve experienced chronic migraines with almost zero pain - it’s mostly all strange sensory symptoms (anxiety, motion and light sensitivity and paralyzing derealization and exhaustion).
I spent all of 2023 trying to find answers from different doctors and specialists.
I finally got a diagnosis for migraines, but felt completely misunderstood by everyone around me until I found your videos. To hear you describe everything I couldn’t articulate (but relate to 100%) felt like someone just saved my life.
Thank you! Keep up the good work and take care of yourself!
Ah bless you Paul. Thanks for your kind words. It means so much to be able to help. It’s great you have a diagnosis too! You’ll improve from here. 😊
I have been dealing with a migraine for 3 months now. I have had dizziness, light headedness, brain fog, sound sensetivity, etc. There's also certain places where i feel more dizzy then others. I turn my head right or left or even up and down and feel more light headed depending on where i am. I even went to my regular doctor a few months ago and she seemed to underestimate my issue, said i should drink more water. I know water is important but i also knew that water wasn't gonna solve my problems.
What a stupid suggestion from your doctor. Are you able to see a specialist?
@@thebluntyorkshireman5161 I can. Based on my symptoms though would you say this is vestibular migraine? And for these symptoms do you know what the typical treatments would be?
Hi Matt! Thank you for this video. I was diagnosed with VM in June 2022. Was doing better, but recently caught Covid again in Dec-23 and then another bad cold in Jan-23.
One of my main symptoms is this specific sensation/uncomfortable feeling in my eyes when I try to focus on anything. It feels like wearing the wrong glasses (even though I don’t wear or need them!). As if my eyes are weighted. It makes reading almost impossible.
Did you experience anything like that?
Hi Louise! Yes, I know what you mean. For me it seem to manifest like I couldnt properly lock onto what i was looking at?
Thank you so much for responding! Yes that’s exactly it!
Did you find anything that helped? I’m massively struggling at the moment with the worsening of symptoms😔
@@Louise0703FL 41 lenses! Check out my video on them. They dumb down the frequency-range in vision and helped me massively.
I hv VM and my vision is wierd like that too. I’ll be in my car, stopped and looking back to see when I can enter the lane and the things behind me feel like they are slowly moving and are not stable and I can’t stop it. Like a things I’m looking at are on a merry go round.
Vision difficulties are my first symptom that the VM is on its way. I’m learning to take my medication then and there, and not wait and see what happens . I only suffer more. Speech issues here as well, I’m with you guy. Scary isn’t it?
Fellow Sheffielder, thanks for the video. Did you wear sunglasses indoors when your photophobia was at its worst, I've read on the specsavers website that it can make things worse but everyday I'm existing with the blinds closed and no indoor lights on, during a mild headache sunglasses calm it down considerably, feel like I'm existing as a mole. Also you mentioned an ear test, did you pay for one of those yourself at Boots for example?
Hello fellow Sheffieldier! How nice to hear from someone in the same city! Yes, I did wear shades inside. I felt silly at first but whatever works! I doubt spec savers know much about VM. I paid for the hearing test, but a Boots one would be fine. Add me on Instagram? Cordelisssmile x
Thanks for the reply, I've deleted my chronic illness account but followed you as AmyClarkesinger@@thebluntyorkshireman5161
Derealization and photophobia 1 year ij
Awful symptoms 🙁
@@thebluntyorkshireman5161 do you have an instagram I could talk to you more at no one seems to understand the symptoms but me
I know you mentioned about how it makes you upset when you connect with people and they stop talking. But I’m 10 months into this hell and need someone to talk to
Hi, really appreciating your videos!
I’m so confused as to whether I have VM?!
I definitely had a BPPV attack 14 weeks ago as I tested positive in the Dix Hallpike and the Epley did help. However I have lingering dizziness that occurs when I’m over stimulated, say at work or do too much movement. My physio said because I react to chocolate, caffeine and cheese that it’s probably VM. However I’m not light or sound sensitive. But when I’m having a spell I do get shocked by sound!
Also my head feels like it’s thrumming with electricity, my vision gets worse and I get a headache over my eyes and a spot at the back of my head, always on the left! 🤷♀️ My left arm seems to go weak too but when I test my grip, it’s not!
Seeing my GP next week to discuss VM and will asked for a private referral. Who best to ask for, an ENT or neurologist?
My physio replied when I said I felt out of breath during my worse time, was that the vagus nerve is affecting by vestibular symptoms so that can cause fatigue and breathlessness.
Apologies for the long post, as you can appreciate vestibular symptoms aren’t straight forward! 🤦♀️
Hi Louise. Firstly, sorry for a late reply. Your comment didnt show up on my notifications. Hmm - it sounds like you might have VM. You dont have to have all the classic symptoms - for example I never head any hearing related issues (many do). Really interesting on the breathing as I have experiened breathing problems too - and the vagus was mentioned to me once by a paramedic. I am on Insta under @cordeliassmile if you want to chat about it.
When you started the Zoloft and propanolol did you find that you felt worse after starting them like the first few weeks/days before getting better?
Oh god yes - for about four weeks I felt terrible! Then when they moved the sertraline up a notch, things started to improve quickly. :)
South Yorkshire lass here… so happy to have found your channel! I have been suffering from chronic dizziness and head pressure (and many other fun symptoms) for around 6 months now. I was referred to ENT at Hallamshire hospital in Sheffield 3 months ago who diagnosed Vestibular Migraines and put on a dose of 120mg of propranolol but it hasn’t helped. Finally got my follow up appointment this weekend and they are now trying me on a different medication and are referring me to neurology but essentially said ‘good luck with the waiting lists’ and they will call me in 3 months while I am waiting to see how I am ‘getting on’. Which tells me the waiting list for neurology will be longer than that.
Did you go private at all? I don’t feel like I can just wait months and months to be seen (not because I think I should be seen above others I just mean because I can’t live like this!). I am also seeing two different physios privately - one is a vestibular specialist and the other is working on my neck and spine etc. Any tips would be appreciated! ❤
Hello fellow Yorkshire (lass)! I did go private. Do you want to message me on Insta? @cordeliassmile.
@@thebluntyorkshireman5161thank you - I’ve sent you a message (it said something about it becoming an invitation to chat) ◡̈
Hi! Did you try any other medications before Zoloft/Propranolol?
Hi Michelle. I have been on amitryptaline many years ago, but that was before I was diagnosed. Amis have helped a lot of others so they are one I'd recommend trying too.
How long did it take for the sertaline to make you feel some improvement
About four weeks. After four weeks they raised the dose from 50MG to 100MG and I noticed things started to improve quickly from that point.
You are a legend 🙌. The information I've got from your videos has been like a dose of sertrline. 7 weeks of hell so far, and I was misdiagnosed with labyrinthitis, but eventually, the docs got it right. Have a great new year, and thanks again 😊
Ah that is a lovely complement! If only! But very pleased the videos have helped and you have a diagnosis!
Are you on the medication permanently? Why did you have an episode this year, and what stopped it?
@@sandrawood7710 yes I am on meds permanently. It happened because I was in an environment full of triggers. However i was fine after half an hour which I believe is down to my meds and other mitigations. 😊
Do you have an instagram or somewhere in addition to YT to follow you?
Hi - yes I am on Insta at cordeliassmile
So interesting to hear your VM triggers blood pressure issues too - I thought I was the only one! I also get the face twitching, breathing, and speech issues. Not fun. Glad you are managing well with medication. Thanks for the update, hope you have a happy new year! 😊
Ah thanks Jen. Yeah, i know weird isnt it! I am glad to hear I am not the only one either!
propanolol gives me breathing issues a heavy heart beats so i stopped it...instead im taking topiramate and spinfree
Ippo engane und ?
@arjunramesh9631 Kozpla bro some days are good some days are not
Fair enough, Hari - meds work for some people but not for others unfortunately.
I am managing 70-90 percent most of my days. 3 years into this.
Brilliant! 90% is excellent!
Hey Matt, curious to know if you ever dealt with new symptoms after your really bad go of it. I started getting just dizziness in March of 2023, which turned into balance issues too so we started Nortriptolyne 20mg. Dizziness got much more manageable and balance got pretty close to normal but then in September I started getting this dropping sensation. Doubled the dose and started propranolol and things started to look pretty good for about a month but on Christmas Day (supposed to be a good day lol) I started getting more extreme vertigo and motion sensitivity. Died down for about a week and yesterday and today seems like they have been the worst vertigo days iv ever had. Just wondering if the cyclical nature with more extreme symptoms after you seem to be healing was something you saw.
You rule man. One of the first videos that really put me at easy when all this started.
Ah cheers Trent - glad to have helped. This hasn’t really happened to me bar the half hour relapse where I got a host of symptoms. Maybe you hit your threshold which you normally stay below? The excess of Christmas maybe?
What if I have derealization all the time even without the photophobia 24-7 is that normal
Yep - that’s what it was like for me too
Used to take prooanolol it was good but makes me so sleepy. Also it gives me breathing issues so had to get off if it after years of taking it. On nurtec now along with a triptan. Works great. Mine is very food induced so i have to be careful with my diet. Had this since i was a kid but diagnosed as an adult.
Understandable. I reduced my original dose of Prop as it was making me feel like an old man!
I went swimming today, with ear plugs, and it triggered severe vertigo symptoms for around one hour but I wasn't getting any anxiety and felt comfortable with it. Is that a good thing to do daily to treat what I think is vestibular migraines? Thanks 🙏
I think doing exercise is a great thing to do - esp if you can manage it OK. It will help with the anxiety too.
@@thebluntyorkshireman5161 I've been taking Sertraline and propranolol for around 6 weeks now and definitely the vestibular migraines are going away but I do feel far too relaxed. Do you eventually get used to it or will it always be the case?
Good to see you again, thanks for the update! 🎊 🎉Happy New Year!🎉 🎊
Ah thanks - HNY to you too x
Just got diagnosed today, but I do get severe head pain as well idk anymore 😢
Well the diagnosis is a good thing now as you can get on the road to treatment! I am sure some folks do get headaches with VM - mine was more of a pressured head. :)
Yeah, but sometimes I get doubts because the medication is only slightly working, and I feel like getting a CT scan just in case.
What are the two meds? Propranolol and what's the other? Thanks
Sertraline, Phil :)
@@thebluntyorkshireman5161 thanks, I am on my third week of Sertraline and propranolol now. I started the carnivore diet and feel so much better just like the last time I did it several months ago. I just don't want to stay on it though as I own a bar and eating meat only is incredibly boring and anti social
Thanks Matt for sharing this with us. I would like to know for how long did you take meds before noticing a change with the balance issues?
The meds took about 5 weeks to make an impact - the sertraline was once my body got used to the initial dose of 50MG and it was raised to 100MG.
Thank you for replying, did your doctor raised the propranolol at some point? I'm currently at 40 mg/day but think I'll need more to feel better about the symptoms
@@cristhianalmonte8694 no - after they lowered it I’ve stayed on 80 mg a day
How long does it take to get rid of floating or on the boat feeling. I only have on boat feeling. Rest I don't have any issues
Hello malayali?
With me - all of my symptoms bar fatigue I was better from after about four months
@@thebluntyorkshireman5161 was it after taking meds?
@@thebluntyorkshireman5161 Was it after taking meds?
@Hari-kk7my hi hari ...ippo engane und vestibular migraine ? Can I get your contact onnu detailed aayi samsaarikan because I'm also feeling the same
Not taking anything