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Spot on, just how i feel with Vestibular migraine

Me too it’s bad!! Too much stress and not taking care of myself. Trying everything not to be on medication. Thank you and sorry it happened again for you. Feel better.

I have experienced episodes of diverticulitis over the past few years and this spring was diagnosed with VM. After watching this video, I’m now wondering if there is a connection, and that the former is causing the latter. I’m really suffering at the moment with VM despite being on Topomax and Qulipta. I’ve had 6 this week alone. I am planning on having surgery asap to correct my colon issue and if I see improvement in my VMs I will definitely report that here. Thank you for even giving me the idea.

You mentioned having an issue with breathing and you have an inhaler. Have you been diagnosed with Asthma? I have VM and I notice I struggle more with breathing issues when I'm out driving or in stores. I wonder if there is a connection? So far, you're the first person who has mentioned this.

Had balance problems since 2008 had loads of tests, ent clinic ect couldn't find anything wrong. Had it really bad beginning of the year the worst it had ever been, fear of meeting my friends in busy environments ect, finally had a appointment with a neurologist was told it vestibular migraine.I hope the medication helps and that I can feel normal again, it's been far too long.

This is one of the most videos I’ve seen on this topic. Thank you for taking the time to share it with us. Seriously

Thank you for sharing your story and journey. I also suffer from chronic migraines with 24/7 symptoms. I've suspected inflammation in myself and been looking into neural circuit dizziness that The Steady Coach on TH-cam talks about. How our brain form negative neural pathways. Have you researched or looked into that? I'm trying to keep an open mind and tackle at this condition at every angle. So far migraine medications haven’t worked for me :(

Hi Matt, thank you for sharing your story. I’ve just been diagnosed with VM after 3 years of incorrect diagnoses. I empathise so much as this is an absolutely horrible thing to deal with that has completely destroyed my life. I was a competitive fell runner and developed a sore neck, blurred vision and GI symptoms out of nowhere. I was sent down a track of acid reflux for 2 years, then I saw a chiropractor all last year as they then thought it was a cervical spine issue. Finally I saw a neurological physio this year who has ruled out everything else, and concluded it is a vestibular problem. A consultant confirmed this last week. My symptoms have slowly got worse but are now constant: tinnitus, blocked ears, fullness in the ears, twitching eyes, sore eyes, blurred vision, sore neck, sore throat, hoarseness, tingling hands and feet. I can’t do any exercise at all other than walking. Anything else brings on vertigo and I’m in bed for a week at least. The consultant gave me some hope in saying that most people get mostly better after finding their triggers. So I’m on magnesium and vitamin B2 supplements, cut out caffeine, alcohol and cheese and I’m practicing mindfulness. I’ve never been an anxious person and my diet has always been good so it’s all very confusing. So I really don’t know where to find my triggers, but we’ll see. I can’t really travel and flying is not an option. I wondered how others have managed with flying? It helps to finally have a firm diagnosis and I’ve found that reading self help books can be very motivating, eg How the mind can heal the body and Why Woo-Woo Works by David Hamilton. I’d really recommend reading self help books as retraining your brain is a significant part of recovery. I hope you are continuing to improve. Cheers

I have also a vestibular migraine. I used to have only an aura migraine, from 20 year old, with a mild headache, but this devilish thing joinef it 9 years ago. First dizzy spells and then the attacks started - they are preceded by fatigue, dizziness and an aura and bad sleep and then a really really bad vertigo that comes as a flash, I collapse to the floor and throw up, for three hours this world turning around and me feeling awful and throwing up, not being able to open my eyes, and then a crushing headache. 10 hours in all. And afterwards I am like having been run over by a truck. And dizzy spells for two weeks until the brain calms down. And photophobia yes. I wear dark glasses that protect from blue light. These artacks used to come more often but my neurologist -who luckily diagnosed me at once - found a medicine that I take to prevent the violent attacks (they are so wild that I have broken a rib vomiting) and they are now more mild and I have only a funny disoriented feeling and a mild headache if I succeed to take the med just before. These vestibular migraines are different in different people, I think. I suffer from motion sickness, too. They seem to be related.

My problem with propananol is i get sick and throw up everytime i take it for some reason

Hi matt im 10 months in and have just being diagnosed with vm. I was told by gp i had labyrinthitis, vestibular neuritis and then ear wax. 3 months for the gp to refer me to ent then a 7 month wait. Thanks for your videos

Hi I suffer from so called vm also awaiting a neurologist is there hope at the end of the tunnel had this since this time last year tried severel medicines and been unsuccessful and I am now house bound by it i cannot cope outside with it and do what i can indoors its so sad and debilitating thanks

Thank you! You have helped me understand this condition that I have a bit better. I hope you improve soon.

Having watched this I'm certain I have a vestibular migraine. A private ENT consultant also said she thinks it's a possibility but after hearing your symptoms, mine are identical. Fluctuations in blood pressure, weird voice, general dizziness 24/7. Thanks so much for sharing.

I’ve just had my first vestibular migraine but to be honest, I’ve probably had more than I think as I’ve had certain symptoms for many years. It’s been a week with this VM. Apparently B12 is very important with any type of dizziness/vertigo. It was either coincidence or has actually helped me as I started to improve a couple of days after taking it.

Could TMJ contribute to this condition as well??

Thank you for sharing valuable information. I am from India and I really appreciate your efforts in making this video.

Yes it crossed my mind all the time! I suffer migraines that sometimes last for weeks, this last bout was almost three weeks, and if you include the pre and post phases of the warm up and cool down, it would be a month long migraine! I also deal with fibromyalgia and rheumatoid arthritis, and they all play off each other so I 'm always trying to battle those thoughts and looking for reasons to live! I'm always forcing myself up, and forcing my self to get out! I try to tell myself that my life matters, and that I can't stab my mothers and my husband in the heart! My Mother lost my father to cancer and lost my brother before he was 40. So I couldn't hurt her that way! I couldn't harm my brothers children that way, they've been traumatized too much over losing their father! For me telling myself that pain changes, and things always shift and pass, and looking for reasons to live, and getting out, and always getting your basic needs, sleep, nutrition, meds, and some exercise, will help with the constant pain. Because sometimes you just have to suck it up. But no it's not selfish, it's normal. But also accepting the pain, making peace with it, also takes the edge off. And weed. Cannabis NOT SMOKING has helped me cope with the pain, and when it gets too intense, take something stronger! But don't end it. Life will get better. Ride it out. And if you need to say no, say no. Take time for yourself and rest listen to your body! I notice that no matter what you do, you will always feel pain. But you can control how you cope with it, and the condition your body will be in when that pain hits.

Hi matt, I'm male (20), do you have any advice for tapering off beta blocker meds for vestibular migraines? To give you a short summary of my story. I've been suffering with VM since I was 17 years old, and recently managed to finally find a dose of meds that worked. I was migraine free for 4 months, however I had suspicions that these meds we're lowering my testosterone levels, and causing me to feel tired and sweat more than the average person. So I went to see an endocrinologist and he agreed that the meds we're probably causing these issues. So I decided to begin tapering off the meds. Started at 20mg propranalol, and 50mg amitriptyline, and over the course of 8 weeks managed to get down to 10mg propranalol and 30/40mg alternating days of amitriptyline. However unfortunately as i switched to 30/40mg alternating days of amitriptyline I noticed my migraines to creep back in. And now they're back to the point where I'm getting them daily again. I have bumped the amitriptyline back up to 40mg (since I felt okay at that dose) and hoping my VM will go away again. However I feel a bit trapped,. I don't want to be on meds all my life because I don't want to feel low on energy all the time, but i also am struggling to want to taper off again due to the VM coming back. What would you do in my situation? Really would appreciate as many opinions as possible.

Interesting you mention IBS which is obviously an anxiety manifestation. And many anxiety symptoms are the same as vestibular ones.

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! ❤

MATE! I am also from sheffield!! Chronic vestibular migraine sufferer also. I feel your pain. Would be good to have a chat about our experiences because only us sufferers know about the diziness!!!

Mate. So glad o found your page! As a fellow Yorkshireman and after 10+ years of dizziness, just recently been diagnosed with vestibular migraines. Feels like such a relief that I'm not going crazy and its not just anxiety!! Gonna be watching all your videos. Big love ❤

Remember the oestrogen-mimic thing has not gone away in spite of decades of awareness, if anything it is worse now with all the deceit around "BPA-free" plastics. Best advice is to avoid ALL plastic, e.g. plastic-wrapped lettuce, spring water in plastic, plastic water filter jugs, wine in plastic (boxed), mild in plastic (bottles or cartons), beer in cans, coke in plastic, etc.. That can help somewhat, though environmental plastic is everywhere now, including in women/babies' placenta, men's semen, antarctic ice, penguin eggs etc.

Paraquat (banned pesticide used (shhhh) by farmers) wafting on the breeze. Dry cleaner's trichloroethylene fumes affecting nearby flats, pavements, shops.

IBS: cut out highly processed seed oils, some of the most inflammatory stuff we ingest.

the way i describe it to people is it comes out of no where (my attacks). it’s hard to explain but it’s not a dizzy sensation necessarily it’s more of a lightheadedness swaying sensation like the inside of my brain feels like it’s rolling around. and it comes super unexpectedly like you have no idea and then boom it hits like lightning and it’s an intense swaying sensation that makes me feel super disoriented and have a little derealization to the point where i feel like i need to sit down right away and grab onto something. and nothing ever triggers it commonly, it’s at the most random times. whether im in bed, whether im washing my face, whether im talking to someone or just walking its always different. i’ve had this for 8 months now and i haven’t been diagnosed but i have every single symptom you said in the video. these little episodes make me feel off balanced at times, affect my vision (i see microdots like tv static u said) and the violent swaying that comes like a bolt of lightning lasts for about 30 to 45 seconds and then it slows down and stops eventually but even after it stops, I just feel super off afterwards for a while. I always noticed I get this after I eat in restaurants and out at stores (not the episodes, but the feeling of just feeling disoriented and feeling like I’m gonna fall over) it’s so scary. And it’s so hard to explain to people. I fully convinced myself. It was a brain tumor for a little bit, but this sounds like exactly what I’m dealing with. it started in October and I had one episode, then the next month around the same time I had another one for the second time ever, then it was on and on like that once a month for a couple more months until it started happening more frequently around twice a month, to now once a week or once every couple days. it’s the weirdest thing ever.

Thanks Matt. I just discovered your channel and found this video quite helpful. Thanks for sharing! I look forward to watching more of your stuff in the future. - Willow

Very good comprehensive thesis. Thanks.

What percentage of recovery did you have?

This describes all my symptoms the anxiety when an attack comes on is the worst. I feel like my neck gets really stiff too. I get a lot of muscle twitches and breathlessness too and the de-realisation is next level in shopping centres. I also get chest pains sometimes. My head also feels like it's going to explode and I get the tingles down my head and my arm. It took me 9 months to get diagnosed its been horrible.

It is so refreshing to hear you talk about this Vestibular Migraine. You have really helped me understand that you aren't alone in this world with this condition where it is not known.

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.

Hi! Did you try any other medications before Zoloft/Propranolol?

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! 🤦‍♀️

Can you explain the medication you’re on and the mitigation measures you described in this video?

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.

Thank you for that “elucidation”. I have been following your posts for awhile and this really hit some “targets” for me.

Interesting, I have had ongoing (3 years) of pins & needles in my hands, with numb arms, strange breathing, headaches and dizzy symptoms with Tinnitus, this is usually triggered by strong smells (purfume, washing powder etc) which then send me into a 3 day cycle of hell! then after going private recently (NHS doctors kept fobing me off with Anxiety) I was sent for Audio vestibular tests, which I was then diagnosed with VM, its early days for me as Im also recovering from an Internal Corotid Aretry dissection that they found from a hospital visit in Feb (I think they found this due to the mixture of VM symptoms and having stroke like symptoms) which landed me in the stoke unit of AE, so im interested to know if anyone else has experienced the numbness and smells that trigger it?

Bro god bless you for this videos. Where i can get those glasses and what kind of medications you took. I live in usa

I started suffering with vertigo earlier this week, it got worse then I felt like my head was in cotton wool, dragged myself out to vote (may 2nd election UK) at the polling both I could hardly speak or understand what the woman was saying to me. When I got home I started seeing colourful zig zag flashing lines in one eye. This lasted about 20 minutes. 4 days on and Im still not better, spatial awareness is crap and I feel unsteady on my feet. Hope its not chronic, dont think I could stand it.

How long did it take for the sertaline to make you feel some improvement

Did you have any issues of dizziness ?

Your videos are so comforting to me. I was recently diagnose with VM's and I'm working on getting the right meds to help. I just want to say Thank you for making these videos, they're encouraging.

Have not watched all your videos, so I am suggesting that you get an MRI.

Just starting on the journey with Vistibular Migraine. Somedays it is 24/7. I feel better listening to you. Thanks

Very true i am facing these issues but the sad part is doctors r not knowledgable abt this i met one ENT specialist she used to tell it's all normal just do some exercise that's all she tells how did u overcome can u please adress me

My story is a bit crazy.. i had a rare stroke and brain bleed 7 months ago a friend found me 10 days after it happened i lived along..40 year old male.. healthy fit they dont no why it happened.. in hospital i complain about how dizzy i was like on a boat, they had not answers .. so i was dizzy everyday all day ..then i listen to a doctor on youtube taking about vestibular migraine and ive has migrains a few times a years for years.. and treats it with nortriptyline so i started 20 mg a week ago and its a miracle im maybe 50 percent better .. ps sorry if my spelling is bad still working on that

Thank you for sharing your experience; you're so pleasant to. We never know when we will help lots of people for so many years by speaking out. I was nodding my head with everything you said. I've been dizzy and All The Things for about 5 years and just last year a specialist neurologist (not my regular one) immediately diagnosed me with this and PPPD. I'm still looking for the answers - looks like more to this story - because i want to raise my son and need to work to have health care. I'm in the US, feel really stuck in an impossible situation. Anyway, thanks for your help today! I have a little more motivation again and that's what I needed. 😊

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?