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My dr prescribed Sibelium 5mg and has so far relieved all my symptoms.

I am chronic as well; however, my symptoms are mild compared to yours. Have you suffered from migraine with aura (without headache) during your lifetime?

That last thing you’ve said about vestibular groups - this has put my mind at ease. I’ve been so worried I’m not going to get better. I’ve been suffering for three months now, slightly improving but waiting on a more refined treatment plan after more balance testing from a great ent I’ve started seeing. I feel like it’ll never go away. It’s really good for morale to see you CAN get better from it. So many groups I’ve seen people suffering for years with no improvement. It’s scary. Thank you.

Thankyou

Thank you for your video! I was wondering if anyone else is experiencing intrusive thoughts as part of their attack. I use to take medication for vm for almost two years I use to have slight intrusive thought nothing crazy. But I have stopped taking the medication for almost a year now and I can see my vm symptoms coming back to due to stress and weather changes. This time I am having a lot of intrusive thoughts constantly all day I wasn’t sure it was my migraine I’m thinking about going back to my med.

Sorry about your break up, that stinks. A little good news: 2 months ago I started a new medication available here in the US ( not sure where else it is available.) It’s called Ajovy, and you self-inject once a month, in the stomach, thigh, or buttocks. I am now having ZERO VMs a month. Zero. I have my life back. If you do not have good insurance, the cost is prohibitive because it is new. I pay about $ 80/ month with good insurance. Still a lot I know. This past year since I was diagnosed, I have tried beta blockers, Topomax, Qlipta, and nothing has worked for me. Abortive drugs like Nurtec and Ubrelvy stopped working altogether. I was suffering everyday. Now, I can even have a few glasses of wine and no issues the next day. I’m no longer triggered by neon lights, strong odors, etc. i have no,vertigo or nausea. I hope this helps anyone who is suffering.😊

sorry about the breakup. It's sucks but I hope you find someone better for you soon.

are you still on medications?

are you sill taking medication

i am going back to the neurologist . thank you for your help. it's back. I think it is the central nervous system.

Steady coach is really helpful in you tube. I have a brain tumour and theb diagnosed with vm this year. ❤

Have you checked for mold? I had VM for a year and recently made the connection with a mold outbreak in my house.

Anyone with a horrible sour / metallic taste in their moth? (no, I don't have deficiencies or diabetes) For me it's more persistent than any other symptoms and some days it just disappears.

Does your VM trigger from motion. Like from driving a car or any kind of travel. Thanks

I’m 18 and have felt endless frustration with very similar symptoms. I’m at uni and I want to get stuck in with a load of sports society’s but just physically can’t due to this. I have been prescribed a few months ago amitriptyline but am worried to take it due to the side affects. Would love to be able to talk to you directly and some specific questions. Is there a cure for conditions like this, should I start taking the medication too. This is really bothering me and I need to get is sorted so soon because it’s effecting my uni education and life in general.

ive suffered with anxiety panic for decades but never had headaches or vertigo but i do have neurocardiogenic syncope where i faint during anxiety etc.....im also a marathon runner and was never dizzy etc.....then i lost my parents last year and fell into depression/anxiety and no treatments helped and then oddly a few months ago started to feel motion sickness biking or walking.......had a million tests and mris and vestibular tests......and decided to run a few times last week(stopped running last year) - running made it worse....my motion sickness feeling is constant all day every day - can this be a vestibular migraine if the symptoms are nonstop instead of occassional? i also never had headaches....i thought VM are attacks that last 1-3 days but not constant..

You have described my symptoms in this video, thanks for the diagnosis man finally!

I been doing countless dr visits they are saying nothing is wrong! this is driving me crazy what the fuck is this??

Thanks for the update - it's good to hear how you're getting on. I just wanted to say I've found your videos really helpful because of the positivity and belief that we can all be better again and it's great to see you able to just get on with your life (albeit with some stress and upset - sorry to hear about the break up). I had daily dizziness for over a year due to VM but it's started to fade away now - I still get some dizziness but often have several weeks now without any which is great. I've found medication, quitting caffeine and lifestyle modifications have helped. Anyway I just wanted to mention that I think your heart palpitations will probably be due to reducing the propranolol - I came off propranolol and changed to a different medication and as I came off it, I had heart palpitations and felt quite ill for a few days as my body adjusted to being without it. I think it's just a normal part of weaning off it that some people experience. I am not a medical professional though so don't take my word for it!

I'm 6 months in now living with daily dizziness. Have good moments and bad moments but can't feel much improvement. Still trying to get a diagnosis. Did you have dizzy spells each day for over 6 months? Just wondering if that's a symptom of chronic VM?

Hey thanks for sharing. Did they do any hearing test like wearing glasses and checking your eyes. Can you please tell me about your glasses ? I could not find glasses you mentioned

Great to see you posting again. I agree that vestibular symptoms (as well as others) are part of a much wider, central nervous system deregulation related issue. I wholeheartedly believe they are a stress response and the brain's way of "distracting us" due to being locked into fight or flight and thinking we are in danger. After 3 years of derealisation, heart palpitations and some other fun stuff lol am now recovering via a couple of very helpful mind-body channels, one being "Pain Free You" and another which is "The DP Manual" - hope that helps anyone ;-)

Hey, just curious, did you get a brain mri? I can't remember.

Good to see you! <3 Sorry about the Break-up. UGH! it's the worst!

Welcome back! I'm glad you're posting again.

FYI, I recently started a new drug called Ajovy and am having really good success so far. Only 2 VMs this month. It's self- injected with a pre-loaded pen, like an epi. I don't know where else it is available, but I'm in the US. It's a newer drug, so unless you have good insurance, which I do, fortunately- It's $900 a month. Ridiculous. Anyway, thought I'd share in the hope that it may help others suffering.

Going on four years now, 24/7. Some days better but NEVER normal. Officially diagnosed at Stanford University, finally, in Dec. 2023. Been working a year now on alleviating symptoms but it’s still wait-and-see because I couldn’t tolerate the medication. Began a new one in early Sept. It’s a depressing and disabling disorder.

Did you hVe oscilopsia too?

Hey mate I’m about to go on some ssri, did this help with the dizziness and photophobia at all, and how long did it take to work, I’m also on propranolol

I have PPPD and think of suicide as soon as I wake up any person that has ever recovered from any vastibular disorder has my respect. I don't know how long I will keep on living tho life like this is no life at all.

Thanks for your videos. It’s good to see and hear from others who have these same issues. VM symptoms started for me 10 months ago, and although I have finally seen a Neurologist I’m really struggling mentally with everything this entails. I’m hopeful to eventually find a medication combination that will make this more manageable, but so far I’m not happy with the results of anything I’ve been prescribed. I make sure to do some form of exercise every day and I’m grateful that I’m still able to do so, but everything else is so difficult and it’s hard to explain to people who just don’t understand it. I can be fine at home or in a place with only a few people, but going to large events, going on dates, trying to have fun with friends at some places,and work some days is just so difficult when the dizziness and a headache that won’t go away start. It has been helpful to see that I’m not alone with this, even though that in itself is a terrible thought because I wouldn’t wish this on my worst enemy. Finding things that do help, like eat plugs and certain glasses, was good but even those aren’t enough some days. Thanks again for your channel. I’ll definitely continue following along.

I have suffered from this for 4 years now and didn’t know what it was until a little while ago. I went to pt for it and it didn’t solve anything for me. What are the steps to treating this? I’m really struggling right now and would appreciate any advice.

Can it be chronic?

I’m in my third year of vestibular migraine 😢 chronic I wish it would end x 😊

Firstly your humor is top notch, thanks for giving me some laughs whilst also anxiously listening in. You have a great way of speaking and wording it all. Im one month into my vestibular disorder , or should i be more positive and say 'journey'. Orginal diagnosis of labrythitis after having dizziness and vertigo every day but after not getting better started thinking it could be something else. Had some visual disturbances which i thought could point to VM, also facial numbness and arm. had a ct scan, that came back fine fortunately. Will ask for an MRI as next and am awaiting appts with neurology and ENT. I really have sympathy for anyone going on through a vestibular condition and can i say thank you for being so open to share the mental impact, that is something that has affected me greatly. You stop feeling like yourself over night and it is for sure a process to get back there, mentally and physically. I wish you all the best Yorkshire man! (I was once a Sheffielder too) I hope you're doing better now?? As i realise this is an old video that just popped up on my YT!

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.

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??