This is My Truth - Vestibular Migraine - Update & My Story Summarised
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- čas přidán 28. 08. 2024
- Matt provides a summary of his experience and treatment and an update on where he is at three years on.
Disclaimer: I am not a Doctor and cannot offer medical advice. If you require professional advice please consult with your Doctor.
Thanks for this! I've been chasing rainbows for months - Opthal, ENT, Cardio, Neuro, Psyche, Sleep doctor, even a witch doctor! Everyone can't tell me what's wrong and that I'm CLEAR (ENT-wise, Opthal-wise, etc). They'll say it might just be anxiety vertigo. I Googled it yesterday and I got "Vestibular Migraine" thanks to the Lord who lead me to that Google search, which let me to CZcams, and led me here! :)
Ah excellent! Thanks indeed and I hope you now find the answers - and solutions you are looking for!
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
Glad you are doing well! I totally agree with going private/paying for treatment. After 6 months of being passed around by the NHS who had no clue what was wrong me, I paid to go private and had my vestibular migraine diagnosis instantly. I’m on venlafaxine now and it’s been two years. I was at about 95% recovery when I caught covid, it has put me back a bit but I know I’ll get there in the end!
Ah fab you got much better. Yes, the covid will be a little setback only, and you will get back to the 95%.
Thank you for sharing valuable information.
I am from India and I really appreciate your efforts in making this video.
Youre very welcome and I am sending my best wishes to you in India!
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.
Youre welcome. Sounds like you have the VM my friend. Hopefully you can now get treated!
@@thebluntyorkshireman5161 Did you have tinnitus with your VM? I had a couple of attacks, things have settled down since but it feels like I'm permanently on a boat - lightheaded, dizzy.
@@CUTSUK luckily no - but many people do 🙁
Glad to hear something positive. I have epilepsy and recently diagnosed as having lateral migraines, after that and meds I have started and still got vertigo. So still on my search for answers. Thanks SO much for your info. I now live in Spain so the system is different and I may have to save up to go private for somethings in other areas. Thanks again.
No worries, and I hope you get the answers you need!
I have this with Wegener's Disease. Thank you for sharing your journey. Stay strong mate. 💪 Hope you're doing better now ( 1 year on). 😊
Ah bless you. I am going fine, ta. I hope you are managing your conditions OK too :)
You are like a mirror to me at times. It is a relief, I’m not alone.
Ah bless you. No you are not alone! x
I too am on my second vestibular episode. The first was about 12 years ago. The second started beginning of June this year and is still active. I now have a diagnosis. Finding your channel is helpful and I really resonate with what you are sharing. So sorry to hear about your Mum. 💗
Let's hope your second episode - will be your last now that you have a diagnosis. I am delighted my videos have helped!
Wow. The feeling when you got off the bus was me last year
I’m here in the United States, it took almost three years (of hell) to get this diagnosis yesterday. Thank you for sharing your story, the more research I do, the more stories I hear, the less alone I feel. Thank you 🙏✨🤍✨
Do you sinus infection inner ear verigo dizzy
@@kimsanghothi6418 yes. I’ve had sinus surgery that didn’t work. I had brain surgery for what we thought was trigeminal neuralgia, that did not work. I’m currently reading “Heal your Headache “ by David Buchholz MD and detoxing from all food and medication triggers to heal this condition naturally as my “sensitive brain” and sensitive body works best with Mother Nature. I was diagnosed with chronic sinusitis but never had many sinus symptoms just pain and pressure mostly with vertigo, chronic fatigue also blood vessel issues in my limbs , hair loss , unexplained weight loss of 70 pounds and an entire nightmare of other symptoms.
Really glad you now have your diagnosis. The road to recovery begins now! Ps Where did you get your diagnosis done btw?
If you have migraines in the US, don’t even bother going to a doctor. They are literally clueless. Absolutely worthless.
Christ almighty Matt thank you so much! I've been suffering with this for a few years it's bloody terrible and of course the doctor keeps telling me it's anxiety and my blood pressure is high. I'm 26! The doctor in the hospital put me on SERC not sert and propanolol and my gp took me back off them! But they were helping definitely. If you don't mind I'll try show my GP this video. You've described exactly what I'm suffering with
Yes of course, feel free to show them! I am glad it has helped.
@@thebluntyorkshireman5161 thanks mate. Hopefully this is the end of it anyway
Thanks for this summary of your experience with VM. It's really helpful to know which meds helped you along with the other aids...I was diagnosed with VM this May. It took 2.5 years. My VM hell started in Mar 2020 following a virus...initially I heard an engine noise, and had the sensation of motion..I felt like I was on a rocking boat some days, but most of the time I felt like the floor was vibrating. Then, I started having balance problems. Long story short, after ruling out serious stuff like a brain tumor, I was diagnosed with VM..My ENT suggested I read the book "Heal Your Headache" which I did (it's an excellent book) and he referred me to a neurologist. The neuro put me on Ajovy which was approved by the FDA (I live in the U.S.) in 2018 for migraine. It's a monoclonal antibody 30 day injection that inhibits CGRP. It's done nothing for me, but for some people it's a miracle med (It's actually a biologic). Since Ajovy is not working I'm going to do the elimination diet in Heal Your Headache to see if I have any food triggers...if that doesn't help, I'm going to try some meds. My vm's are chronic..I have 2 sometimes 3 days a week where I'm almost normal. The other days the symptoms range from not too bad to awful. On the worst days everything sounds louder than normal, and brighter, and the intensity of the vibrations correlates accordingly as do the balance issues. I don't let it stop me from going out. I'm afraid if I give in to the fear of walking into someone or falling etc, I'll get worse. It gives me hope to know that you have found help with the meds and special glasses. Thank you for taking the time and giving your effort to help people like me who are struggling...Having hope that things can/will get better makes all the difference in the world.
Thanks for sharing your story too. The book sounds good - I have heard of it, but I havent got a copy. I logged all my diet and was able to identify and remove things that were causing my IBS - which I generally think could be the original trigger of inflammation in my body, which eventually led to VM.
@@thebluntyorkshireman5161 I've been diagnosed with IBS too, back in the 80's...now I'm wondering if it's abdominal migraine...yes, that is a real thing. The same migrainous action that causes migraine in the head can cause abdominal migraine.. I became aware of abdominal migraine at the same time I became aware of vestibular migraine through Dr. Teixido here on youtube..he is a world class expert in vestibular migraine....he is an ENT/neuro-otologist here in ithe U.S...and a professor at Thomas Jefferson University. . He is an advocate and educator for VM and speaks often at the Migraine World Summit. This video podcast where he is interviewed at the Migraine World Summit helped me in the early stages..he addresses the question "what is vestibular migraine" czcams.com/video/HINKrGbTzmM/video.html If it were not for him I'd still be in the dark b/c my primary care doc blew me off, told me I had tinnitus and I was treated like the my symptoms were due to anxiety, iow 'all in my head'...Dr. Teixido saved my life so to speak.
Try to itemize life stressors.i.e unresolved work, financial, or relationship issues. They can be a chronic trigger. Sometimes it's as straight forward as controlling those and implementing a migraine diet. Journaling is a great help to get you out of it. You can do it! 👌
@@stefanbernhard2710 Good tips if any of those things are an issue.
@@thebluntyorkshireman5161 yep. That's why I said sometimes :)
Hey Matt nice to see you sharing positivity and knowledge . Glad to hear you are doing better everyday ! Find your CHAPPINESS
Hello mate! Same to you - glad to see your interviews are thriving!
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.
Thank you for sharing. I have the same condition in a different form which has been diagnosed. I live in New York. I cannot have any alcohol or caffeine. Your use of the word derealization as well as your story about irregular breathing is consistent with my experience. They don’t tell you that. I so appreciate everything you’ve said. Good luck.
Ah thanks, Dani. Yes, the breathing thing is so weird isn’t it. I’m glad you appreciated the video!
Big help! Thank you. My f instructor episode was 25 years ago. This time is worse. But thank you for your insight, a huge boost!
Thanks Michael. All the best as you begin to tackle this latest episode.
Thank you very much for doing this. It sounds precisely like me, and I have also been fobbed off with "anxiety", which of course arises as a result of our despair.
You’re welcome. Don’t let them keep fobbing you off!
Thanks so much for the positive update! It gives me hope 🤗
Ah glad it gave you hope. There is much to be hopeful for!
I have a complicated ent past. I had bilateral ear surgery for otosclerosis. I had balance function test which showed i had no balance on my right side, then i had a brain scan and found out i had vestibular migraines. I got diagnosed with fibromyalgia and chronic fatigue a yr ago. I was suffering so bad i couldnt get out of bed for wks. Ent dr wanted me on beta blockers but i have mild asthma and instead have been on amitriptyline for 4mths, it doesnt stop it but it does lessen the symptoms alot. Thanks for talking about this, ive often felt so alone. I was having one long migraine that could last days, even up to 2wks.
I am sorry you have suffered, Selina but glad you are getting some relief now x
I appreciate your positive outlook. Some yt videos on any vestibular disorders are downright toxic and should be banned
Glad you like the positivety, mate.
Hi Matt. Glad you’re still doing the videos. I will listen over the weekend mate to the last two videos. Hope you can get around to the gym/exercise video soon. 👍 Really excited for this gym exercise video mate as you know. Tc
Iv just been listening to you.lightbulb momentvyou have just discribed me .like going in the shops.thought i was starting with panic attacks but knew inside of me they wernt iv had these migrains now for 3 months .off to drs again now with all this .thank you
Excellent! I’m glad it helped!
Really enjoyed this havnt had a diagnosis yet but pretty sure I’m having VM. Had many scans and was initially told I had an eustation tube dysfunction but my symptoms I believe were far too powerful. Spent three months house bound but getting there now, reluctant to take meds until diagnosis but do occasionally take amytriptyline which helps. I get very severe ear pressure and tinnitus when I have a bad attack. Got appointment end of this month so will let everyone know how I get on 👍
Hi Anne. Ah I am glad it helped. And yes, tinnitus is reported as a symptom by quite a few sufferers. I hope you now have your diagnosis and are getting those meds! x
I have had vestibular migraine 9 years now after a bad concussion im actually worse now than when it began! I have tried so many meds which either give me some relief not much or not at all, lamotrogine is the only one that helped Thanks for the positive post
Ah sorry to hear that, Gem. It does sound like the concussion has stirred it up. Maybe it will settle as you recover from the concussion?
@@thebluntyorkshireman5161 Ye I hope so but 9 years in and im worse than when it started! Im on propanolol now going up to 80 mg so hoping it helps soon
@@dolphin92gl it’s awful isn’t it.
Thanks for the videos - comforting to know there is a path to mostly normal
No worries. There sure is, Jeff.
I'm still on my road to recovery I get to feeling about 90% normal but I'm stuggling to get that last 10% I find your mental attitude towards the illness can have a big impact on you. My biggest problems are still computer screens, rapid movement(driving) bright light and loud noise, FL-41's definately help as dow ear plugs in noisy places. The best advice I could give anyone especially if you consume a lot of diet soft drinks is cut Caffiene and Aspartame out of you diet and see if that helps.
Hello Frog. I couldnt agree more. Sugar and sugar free drinks are very bad for you (including your liver). It's good you are at 90% - that 10% will probably just take time. You are almost there, though!
It just seems like the more you do particular things the less problems you have. Unfortunately it takes so much repetition. I play video games for 3 hours or so and have no problems. When it first happened I couldn't even look at a screen. Driving is still a problem though I live in town and don't drive a lot. It's been about 2 years for me
@@sevn8757 Sounds like there are some improvements there, though Sevn, playing your games for longer sounds positive!
Hi Matt, don’t know how I missed this, thank you for the update and I’m glad how well you’re doing, we first spoke in 2019.. my first episode being in the September so I’m 3 years in now.. approx 90% better with the occasional glitch… agree totally you need
The Right medication combination.
Great stuff, mate. Slowly but surely!
What med combination are you on?
Hi Kerry, I take 85mg of Nortriptyline every evening. It took a while for me to adjust to the Meds but once working they did the job and have carried on working. You need to give the meds a chance… initially you won’t feel great but you have to persist.
I was just diagnosed with VM and POTS I’ve been having symptoms for 4 months straight . I’ve fainted , brain fog , problems concentrating, off balance , dizziness, shortness of breath , head pressure that’s insane, anxiety, problems with vision especially when playing Xbox it’s been horrible. They just prescribed me the meds you shown in this video I pray it helps because I can’t take it .
I am sure it will, give the meds a bit of time to bed in. :)
I've just started getting symptoms for the last 6 weeks and im hateing life. I feel like im dying 😪. Thanks so much for making these videos its helped so much
Ah bless, I know but your life will get back on track. Hang in there.
@@thebluntyorkshireman5161 ❤️
I'm 6 weeks too
Headache/lightheaded/feels asif I'm in a lift changing floors/ears pressure and head feels heavy
@victoriapriestman3686 it's literally life changing. Stick in there
@@victoriapriestman3686 are you diagnosed now? X
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 hv migraine evey days for so many years and affect my ears too. Waiting for the MRI , hope everything will be fine. Although the specialist given me the medication but I don't really take it. I am worried about the side effects!! Thanks for your video. Take care. Love from Singapore 🇸🇬
Hello to Singapore! Well, I would think about trying the meds. Remember side effects may not occur (some of them are very rare).
@@thebluntyorkshireman5161 thank you 😊
Thanks for taking the time to summarize. I hear you about meds. And I’m scared, almost all make me feel worse. I have a Dr. Appt this Friday, and he’s gonna fuss again because I bailed on the meds. Again. I’m about 70% improved since getting diagnosed a year ago. Meds set me back to 50% or less. ( expect beta blocker eye drops) anyway sorry for my going on and on. Thanks again and wishing your mom well.
Getting 70% is really good though - especially without meds ! 😊
@@thebluntyorkshireman5161 I’m going tell my doctor that!! Thanks
Can you share how you did this without meds? I cant take ssri meds, or bb
@@jennissw i have VM and MdDS so I don’t know if that has anything to do with it. It’s multiple things and even the “small” things are vital. Plenty of water, supplements (magnesium, b2, coq10 specifically ubiquinol, vitamin d,) timolol eye drops. These are beta blockers but somehow they are different than oral. Also move even and especially if I don’t feel well. Walk, light seated yoga. Etc. At first someone told me that and it just made me angry. But it helps. And intentional rest. Ginger, like turmeric helps too. Too much to say here and everyone is different. Try looking at the dizzy cook Alicia Wolf. She has loads of information and a lot of what I learned is from her website. Sometimes I feel bad and I have to go through my list, ok what do I need and try different things. At times I have to give up and lie down but not often anymore. I’m sorry if this is too long. 💕
@@juliekling8598 thank you. I was told it's vm or tmj.
Thank you for sharing, and giving hope this can be managed. ❤
Bro god bless you for this videos. Where i can get those glasses and what kind of medications you took. I live in usa
Thanks Angel, your'e welcome. In the states, try Axon Optics. I am on sertraline and propranalol.
Thank you for the video
Thank you for this. I’m only a few weeks in to this, it started 5 weeks ago. I pretty much self diagnosed VM after a morning of sudden dizziness and vertigo while exercising on the floor ( the floor felt like it dropped from beneath me), followed by a weird migraine with visual aura many hours later. I already suffer from occasional regular migraines so that’s how I put 2 and 2 together along with Dr. Google. The GP here in Chicago sent me Meclizine for vertigo and Zofran for nausea. They did nothing. A headache specialist diagnosed VM and gave me Ubrelvy. That works very after onset, but does not prevent. So I’m happy to have your video describing preventative measures and meds, thank you.
What is your experience with trying physio for this? Epley maneuver for example.
I’m having vertigo migraine also for quite long , gp told me was bppv but vestibular therapist an uncologist said that was vertigo migraine, felling rough most days , don’t go out much and for about a week I’ve lost apetite having nausea and dry hearch , felling very depressed crying all day and scared that won’t go away 😢😢😢
I am sorry you are struggling, Jose and totally understand your pain. It will go away. If you have the diagnosis now, then that is a big step towards recovery!
Did urs go away?
So helpful, thanks
You are welcome.
Thank you
Hi Matt, I recently tried the FL-41 lenses from the company you mentioned but they didn’t seem to help me much when looking at pc screens etc. i was really hoping they’d work but unfortunately didn’t seem to do much in the couple of weeks I had them. I’m currently on amitriptyline and have just increased to 40mg. Have seen some improvements since taking this medication, so praying that it can get me back to normal as I miss feeling like myself. Wishing you and all your family the best, thank you for the informational content🙂
Hey Lewis, how long did it take to get used to the amitriptyline? I just started 20mg nortriptyline and am feeling pretty awful but they say that should settle after a month?
@@PrinceStudiosFX so I tried nortriptyline and it made me feel worse too. I’ve been on the amitriptyline for 3 months now I think. Started off on 20mg and added 10mg each month. The first day after adding an extra tablet I usually feel pretty drowsy and tired and then after a couple of days I’m used to it. I have felt slightly better since taking amitriptyline but still get attacks basically every day. I’m in my second episode of the migraines currently with my first one being from February 2021 to July 2021. That was solved through propranolol which didn’t work this time for some reason. It’s a long process unfortunately, you’ve just got to stay strong and the good times will come eventually. Wishing you all the best.
@@lewismountstephens7620
Hey Lewis, thank you so much for your reply. I am sorry that the propranolol stopped working and that you are having to go through this condition again! I will continue with the nortriptyline for now and if I find it's still intolerable, I may make the switch to amitriptyline. I really hope it works for you and that you get well soon
@@PrinceStudiosFX you too! Let me know if you have any questions and hopefully I may be able to help since I’ve had this condition on and off for over 2 years now despite only being 19 lol.
Hi Lewis. I am sorry to hear that. Maybe try some cheap computer gaming specs? They are yellow lenses. They might be better for you....I am glad you are seeing some improvements now. :)
Hi , very happy your doing better, and appreciate very much that you are doing this type of video. I have been dealing with this beast of symptoms such as boat/swaying sensation, and trampoline walking since last April and was just diagnosed with Vestibular Migraine. Had you tried to do vestibular therapy to help with treating your symptoms?
Hi Caroline. I am sorry you have been suffering, but it is great you have a diagnosis. Having a diagnosis is a major step on the road to recovery!. Yes, I did some vestibular physio. She was really good and knowledgeable about everything to do with VM. Her advice was to begin the physio once the meds have started to bed in. Her logic is that you have to stop the migraine firing (via meds) before you then fix the brain (so to speak) via the physio.
@@thebluntyorkshireman5161 hi, that is great, thanks for your feedback. I haven't been prescribed any meds as of yet, i do take supplements that help tame the symptoms such as magnesium at night. I am still learning so much about this, was wondering if your condition was chronic 24/7 ? Mine goes down a level yet is always present.
@@carolinevillamar9230 yes it was chronic, with constant symptoms 24/7. Really awful experience.
Hi great video i to suffer with VM first attck was way back in 1997 it then vanished it returned in 2019 same as you my GP assumed it was a virus. I was ref to ENT and was seen by a fantastic Vestibular Consultant iam about to start Flunarizine after not getting on with several other medications. My attcks are always associated with Baromatric air pressure changes , head movements , Visual stimulation , Fragrances and tend to last for 3 days at a time and im knackered for a bout a week after each attack
Ah yes, the visual stimulation. That is one of my tiggers too.
Your video is excellent and I can't tell you how much is help me this morning because my symptoms only started coming on a couple of weeks ago I can relate to the anxiety one feels not really knowing what's going on. I have suffered from migraines for years but never had these symptoms until recently. I went for a diagnosis I was told I had vertigo, but I feel I was wrongly diagnosed. Just before the symptoms of derealization and visual issues came on I'd had a migraine for several days. I'm going to take the advice that you've given of getting a proper diagnosis. However, I just wanted to ask what the name of those glasses is, because I can't seem to catch it in your video. Very very helpful video. Thank you so much for shedding some light on what I'm going through. I feel better already. Very grateful, Linda from Kelowna, BC, Canada time I'm watching this on September 24th, 2023 at 9 a.m.
Hey Linda. I’m glad you found me! It sounds like you might have VM - so defo seek that diagnosis. The glasses are FL -41 lenses. X
@@thebluntyorkshireman5161
🫶🏻watching you from Los Angeles 🇺🇸
4/25/2024. Ty for info on eye😎glasses.
@@mimiv8766 Hello to LA ! Lovely to know, I love the US!
I live with this and seems be when biometric weather change does cause an affect for me and pc screens can. But weather pressure gets me dunno if does you. I have sumatriptan for acute migraine and epillim chrono daily. Working out even when ill helps me and sounds stupid playing video games now youd think it make it worse but motion in games like fiffa and focus seems make me feel more at ease unless its my focus on something else. I had channel blocker injections which helped with acute attakcs for about a week. Glad you feel better as such it does seem a viscious cycle.
Yeah, I think changes in the weather do have an influence. Ive done a video on it before. FIFA doesnt sound stupid at all. I remember moving in a car seemed to make things more normal. Almost like being in motion was a counter to the inbalance while being stationary. Maybe have a think about botox if you are going down the injection route. I know it has worked for some folks.
@@thebluntyorkshireman5161 cheers for the reply
Hi thank you for this great informations .My question is did you have pressure in your ears and tinnitus ? I hope you doing well at the moment THANKS.
No worries. No, I didnt het pressure or tinnitus in the ear but many people do, unfortunately.
@@thebluntyorkshireman5161 THANKS again
Thanks for positing. I hope you are still doing well. This video was suggested to me as I was looking at a condition call PPPD, the symptoms sound very similar, have you heard of it and is it the same thing? I’ve only just started with this but very concerned!
Hi mate. I am ok thanks. Yes I know of pppd - I’ve done a video on it as well. Have a look at my video list 😊 no imo it’s different - an illness which I think VM can lead to for some folks.
I live in Thailand and can buy propranolol and Sertraline over the counter and got some this morning. How long did it take to start working? Some other videos I've watched said it can take 2 months or even longer. Thanks
Wow! Different over there I guess. It took about 4-6 weeks for them to have an impact.
@@thebluntyorkshireman5161 ha, can buy all medicine over the counter. I'm about 7 weeks in now and they are definitely working very well.
Ty kindly
My husband had his 2nd episode of vertigo, while all along he had lightheadedness. His ENT just diagnosed VM. Waiting for a referral to a neurologist who deals with VM. All the ones I have found don’t list VM as their specialty.
For him, we think it was a food trigger, 1 hour before his extreme vertigo, he had a Vietnamese meal with Lemongrass. He winded up in the ER 12 hours later due to dehydration from vomiting.
He is on Meclizine 25 mg, made him sleepy, but works 95%. Unfortunately, he must stay on it or vertigo returns. I have eliminated some foods like nuts, avocado, sleeping earlier, spices.
Good luck to everyone experiencing this, it’s truly awful.
We are in NYC, if anyone knows of a specialist please let us know.
Thanks for this video. I have recently been diagnosed with VM and relate to so much of what you went through. I’ve been prescribed sertraline also. Are there plans to eventually taper off the meds at some stage?
Hi there glad your doing better. Did you actually have migraines and headaches ?
Hey. Thanks! I didnt have a conventional headache. I had head pressure.
Did u try magnesium 400-500 mg as well for 6 weeks? Did u try b2 400 mg as well? John hopkins paper “Migraine-More than a headache” and British association for study in headache mention these supplements as having good evidence for some patients.
I love you mate , oil up and get your curry out. the amount of times you got the meds and fl-41 lens out lol
I believe I have pppd caused from vm. So I had covid this year symptoms all began. VNG test showed 33percent damage two months later got another one they say they saw nothing which I thought was weird because therapist had always told me the existing damage should always appear just looking for more
I had horrible migraines for two months. Do t get them much anymore. I for sure think I have pppd. Been 7 months total maybe two months with pppd.
Eyes for sure are off feels like they skip in the sun everything is much worse balance. Head pressure. Sway. And just feel off. Boating sensation is gone. Don’t wear a hat or glasses anymore. Laying down ok. I always have that fuzz in the head but noticing it’s fading. Hope these are good songs. Bobble head the worst.
Will get better that I know. Takes time. Everyone is different
Thanks
I heard some people experience this with binocular vision dysfunction
Really. Ugh, horrible for them.
Not sure what that is, but I have monovision. One eye is near sighted and the other far… together they work well, but separated, I am blind, need graduated lenses with a magnifier. Sometimes, I see rainbows, like I’m looking into kaleidoscope.
Hi Matt
Thank you for the videos - really interesting. I was diagnosed with vestibular migraine a few months ago - such a horrible illness. After some months of Amitriptyline l felt well enough today to try to get back on my bike for a tiny weeny bike-ride. Well l was fine whilst l was on it, but once l came off l have been incredibly dizzy all afternoon. Any ideas? Also how long did it take for your propranolol to work please - l’m going on it soon. Many thanks.
Hi Beverley. Ah bummer, but it is good the amit is starting to work. I suspect the bike thing is probably because you still have symptoms so it stirred them up a bit. The combo of meds took about 4-6 weeks to really make an impact. x
I also had an attack 5 years ago but I got better when I was diagnosed with hypothyroidism. Once.I got my levothyroxine medication the vestibular migranes were gone. I got another attack 12 weeks ago. I automatically thought it was hypothyroidism again. I got some labs and my thyroid was fine. This time I had ear pressure, ear pain, tinnitus, and laryngitis, and a sinus infection. Just got a diagnosis of VM this Tuesday. I got prescribed verapamil. I hope it helps because I have been suffering for 12 weeks. I also lost my balance as well.
Hi Ruby how are you doing with the medication? Did the medication help with the symptoms you experienced?
Verapmil was prescribed but monitor your blood pressure because it can drop it dangerously low
Hi, just been diagnosed with VM after dealing with it for a month, also been prescribed propranolol and been taking it for about 3 weeks now, with very slight improvements. How long did it take for you to see a great improvement or change in symptoms? Thank you
Hi Viktoria. I am sorry you are suffering but it is good news you have a diagnosis - it is the first step to getting better. It took about 3 months for me to feel a lot better. Meds-wise they took about a month to kick in.
I’m 3 years in and finally at the end, I’m probably 90%. I still struggle with Photo Phobia/Light Sensitivity. You’ve mentioned you also had it. Did your’s go away?
Fantastic. Almost there! Yes it did.
@@thebluntyorkshireman5161 Thanks for the response and videos, they were very helpful. -Be Well
@@CoinKing13 Thank you!
Food people! Food! No foods with tyramine, nitrates, nitrites, caffeine, alcohol. It sucks but it’s worth it.
My 41 yo daughter has been plagued by this for past 2+ yrs. She is a recovering alcoholic with 7yrs sobriety. But she still has addiction of 2 pks cigarettes per day and minimum of 12 pk diet coke per day. Uses sweet and low in coffee. Does eat too much junk. Does any of this factor into the VM dx. I tried to tell her for yrs aspartame eats the brain
Hi Chris. Sorry to hear she is suffering but massive kudos to her for overcoming the alcohol addiction. I dont think the smokes would be impacting but something like diet coke, which will probably have caffine in, is something that can upset the body from a migraine point of view.
Matt thanks for sharing your experiences. I'm in the middle of my diagnostic journey and now waiting for my Neurologist appointment - I was referred by my ENT who said I probably have Vestibular Migraine but she wasn't sure. My confusion however is everything I read suggests vestibular migraines only last up to 72 hours. I've been dealing with this for 3 months now and clearly you've been dealing with it far longer. What's your doctors telling you about this notion that VM is limited to hours or days?
Hi WSH! They defo dont last a mere 72 hours! They last month at a time! Nobody has actually ever told me they are limited to 72 hours. I think that assumption is an incorrect one (probably because that's how long regular migraines tend to last). My guess is slightly ill informed doctors!
@@thebluntyorkshireman5161 100% agree. Fortunately I found a great neurologist and she confirmed vestibular migraines and that they do indeed last months. She is awesome and we're on the journey now. Based on what I've heard and read I'm really lucky to have figured this out in only 3 months. Fortunately my symptoms have improved and I start vestibular therapy on Monday next week.
I want to THANK YOU for taking the time to post your video's. I can't tell you how helpful they've been to me and I'm sure to others.
@@wellseasonedhiker great news, hiker. She sounds brilliant! And you’re welcome re the videos 😊
No idea if I have this but I have bad headaches and feel sick and can't walk without feeling like I am a bouncy castle pressure in ears head and neck. Doctors are laughing at me saying I'm making it up. I can't afford to go private as I am on universal credit. I don't know what to do I am scared I'll get no help and have to suffer I have no support et all
Hi Anne. I am sorry to hear you are suffering. It does sound like you might have VM. I am annoyed and horrified to hear that doctors are laughing at you. That is disgusting. Can you take a small loan out to use to see a specalist who will treat you? x
So I have had migraines for 34 years but the past few years they have become much worse and I’m 51
Now I have the blasted vestibule migraine and have two Hemiplegic migraines that sent me to ER!
I think the worse part of all the VMs is the aura. I have the silent migraine and vertigo leading up to the pain but it may take it a good 24 hrs before pain hits but the silent portion never goes away. I have at least 20 a month and that’s not an exaggeration! I use maxalt to help and it does help but as soon as the meds wear off I’m sick again!
No treatment has worked yet!
None! PT or meds, cbd or medial mare! Nothin helps! Only maxalt as a rescue medication! No preventative!
I just survive each day by Gods grace!
I’m sorry to hear you have suffered at length with this awful condition. I wonder if it’s worsened recently due to hormones?
@@thebluntyorkshireman5161
Well I’ve been on hormone replacement since 96 due to surgery. Nothing has changed as far as dose. Not sure why the increased misery!
@@okiecrow7160 Hmm no, unless your dose needs changing?!
Thanks for sharing. Do you intend to stay on the meds lifelong?
Absolutely yes. I see them as the same as blood pressure tablets. You wouldnt come off BP tablets otherwise your BP will get poorly again. For me there is no difference when it comes to your vestibular system not working properly...why stop the treatment...
Hi! Are you still taking your meds even tho you’re now 100%? I’m a year into my diagnosis and I’m on Pizotifen, after a few months I noticed some improvement and got to probably about 60/70% but I got ill in December and it’s set me back and my symptoms are worse again. So not sure what to do now, as I just thought the longer I was on the meds the better I’d get.. I’m only 27 and live in Bham UK and I just hope I get to 100% as I want to start a family soon.
Hi Kerry. Yes I have remained on the meds as IMO they are one of the reasons I have remained 100% better. Ah, well getting ill with something like a virus will cause a bit of a releapse. Even today if I get a cold, I can get pangs of VM symtoms. I think this is because the cold, bug or viris causes inflammation in the body - and inflammation is at the root of what is wrong with us. You will get 100% better, you are young and with the right treatment and mitigation you will get there. x
@@thebluntyorkshireman5161 thank you! I just don’t know how to get 100% better, I just want my life to be back to normal but I just feel like I’m kinda stuck feeling like this ☹️
@@kerrycoogan2337 Aww - have a look at my videos, they will hopefully help you get the knowledge to get well again. You wont be stuck - that was my constant fear, but it is just a fear, not reality x
Did you have head pains with your derealization. Mine is terrible. 24-7 never stops every second of the day
No, I never really had head pain. It was more like this horrible pressure in my head.
ago
? Have felt really good last three weeks with minor issues. Last couple days little flare up with being dizzy comes and goes. Would still say I feel about 85 percent. This common? I assume it is and will just continue to get better? Thanks.
Excellent that you are hitting 85%, Tim. Yeah, sounds very much like what a lot of people progressing towards 100% experience.
Hey.. For me when I walk in buildings or shopping centers everything seems a little crooked. Like the floor and walls. Then it starts getting tricky to balance and walk on what looks like crooked floors. Mostly happens in busy areas with lights. Does that sound like VM? It's like my brain has issues seeing things as straight. Things are off and tilted. Also been fatigued.
Thanks for all you do!
Ah thanks for the kind words, Aaron, much appreciated. Yes, that sounds like VM. Sounds like you are getting sensory overload (which I got from shopping centres too during my chronic phases!). Yeah, IMO your brain is tripping out due to the visual overload - which is being brought on by the VM.
@@thebluntyorkshireman5161 33 days after the attack and I'm feeling so much better man! On an SSRI and a beta blocker too and FL-41s thanks to you! Keep posting man. You helped me a lot when I was feeling low.. this condition really messes with your head. Especially as a man with work, gym, family and all these responsibilities.
Thinking to try the fl41 . Don’t you think makes you more sensitive if you wearing them a lot. I don’t want to get used to them wearing them all the time.
No I don’t agree with that. And even if you got used to them so what if it stops you being really poorly with VM 🤷🏼♂️
Did you have vertigo? What’s interesting about this condition is doctors will say the most bizarre stuff like you need a spinal tap cause they don’t now
No, I didnt have vertigo. Not everybody does. I'd be really cautious letting them do invasive things like a spinal tap. Im afriad a lot of doctors know nothing about VM - hence suggesting stupid treatment options.
@thebluntyorkshireman5161 I’m so glad you didn’t have vertigo! That’s great to hear. I had vertigo with your other symptoms such as derealization with the breathing problems. For 3 months I also could hardly see out of my eyes
Did you have any issues of dizziness ?
Not so much. It was more a feeling of being off balance.
What was the most helpful thing
The right meds and the FL 41 lenses.
Did you have derealization
This condition is crazy cause if you don’t accept your condition they’ll keep going with it
@@exlandscaper1933 Oh yes. Check out my video 'drunk without the fun bit'.
What’s your instagram would like to talk more about
Hi mat .. I too had one episode undiagnosed with minor symptoms.. But after 3 years( now ) I have vertigo imbalance and severe headache for 3 months.. This time also doctors are telling ur stressed and also googling will worse ur symptoms.. How I can tell them this is vm and start medication
Hi Muruga. I would tell them that you think it is VM and present the evidence - the inbalance etc. feel free to show them one of my videos if it helps?
Hi Matt, I hope you feel well. May I know did you have the feeling of walking on the boat sensation? When I walk I feel like the floor is moving under my feet.
And also when did you start taking medication in your journey?
Your help would be really appreciated
Hi Esh. Yes, I had that sensation. I also used to get the sensation of being rocked, esp when in bed. I started taking my meds about three weeks after being unwell (I think)....
@@thebluntyorkshireman5161 thanks for your answer. May I ask how long did you have the feeling of walking on the boat? And what do you suggest for that?
@@eshghedelameshghedelam1727 hmm I think it lasted for as long as I was in the chronic period. So around four months. It then would occasionally occur for the next year or so but it doesn’t at all now.
Mine is like the floor is sponge or rubber, an extra bounce or pulsation in every step? And at night it’s like my bed is moving.
Did amitriptyline help you then ?
It was hard to tell, as the dose was very small. I stopped having any symptoms, so I would say yes.
From India under vestibular migraine , balance problem since 2019
Can i use sertraline and propanalol for vestibular migraines for long term..
Without doctor prescription..
I tried many medicines still not worked for me. .
Please advice?
Hello Asif - all the way from India! I dont know how the system works in India but you shouldnt get meds without a prescription from a Doctor- it could be dangerous.
What was the glasses again and size?
They are FL-41 lenses, mate. Size depends on...how big your head is!
Did you get any tingling sensations eg in the head, feet and hands?
I sure did. In my head and in my hands when I had my major ( initial) attack.
@@thebluntyorkshireman5161 Thanks for the quick response and for your video.
I have pretty much the same symptoms and have done over the past 4 months. I actually thought I was starting with a severe mental illness due to the derealisation issues and your video means I'm not crazy.
I totally agree with your NHS comments. I'm very, very lucky that I have PMI through work and have managed to have vestibular tests which are pointing to VMs (it's how I found this video). I'm due to see an ENT Consultant in a few weeks to discuss them.
I actually saw a Neurologist privately in Sheffield too and got the same response as you once my MRIs were clear. That it's anxiety and I need to see a psychiatrist! He didn't want to know about my migraines and the fact that I had insomnia because they woke me up during the night. I've never suffered from anxiety and had a very relaxed outlook on life.
I'm so glad you mentioned the weird breathing too lol!! Such a strange sensation.
Can I ask a couple of other questions:
I like to go to the football and have a few beers - how do you find drinking as I find it triggers symptoms after 1 or 2 pints?
Same with exercising? Weight lifting is okay ish but doing cardio, like running, sets it off. Exercise is everything to me and I've gone from working out 6 days a week to being unable to do more than 15 mins now.
How are u now ??
I am really well, thanks. Better!
Do you still get head pressure? I’m 2 and a half years in, still no diagnosis, I have an upcoming appointment with a neurologist though, I still get head pressure and eye pressure a lot
I use epsom salts in the bath, soak for ten minutes using no bath oils etc or soap to start....
Osmosis for magnesium is best, absolutely helps no side effects except clean the bath!
Yes, on occasions. It's probably the most common symptom I feel now and then. Fingers crossed for the neuro appointment x
I had a brain haemorrhage 12 years ago but only recently the vistbular diagnosis. I wish I had know sooner because the heqd pressure from the vestibular always made me worry i was gong to have another SAH . Now I know what it is its easier but i would prefer not to have it. I also found taking pyrodixine helped . I try not to have meds as the side effects for me are worse. Psychological work helps too.
I really hope your appointments go well. My gp who is fairly clueless diagnosed this immediately and taking buccal for nausea is great and sumatriptans as soon as i feel it building up.
I also had great albeit private phsyio exercises to do and although they seem really odd were fantastic.
This is a good channel🙂
@@pebblesmiller9026 Thanks for the kind compliment, Pebbles and I am glad you have found some treatments that give some relief.
I'm confused. So you suffer from VM all day and all night, 24/7?
It never goes away or comes in spurts?
Yes, I suffered from VM all day and all night, 24/7. It never went away until I got better after about four months.
@@thebluntyorkshireman5161 what are you taking i had this since 2019 no so called doctor knows anything they all say it must be anxiety or stress been to ENT can't find anything been to a so called ear specialist had steroid shots in ears ,had a cat scan all they said was they saw unspecified white matter I asked what is that they said I don't know! WTF this was at the Emergency hospital No clue I can't take it much longer 😫
hallo matt i have to suggest. since no doctors still noclue vestibular migraine visual snow, tinnitus. how about the open pettion? hope scientist doctor and biochemistry working together open issue with vestibular migraine. 😂
Hi there. An open petition might be a good idea. Why dont you set one up!?
Sir I am suffering form vertiginous migraine..
Is it from brain or inner ear?
That is a very good question, my friend. Have a look at my videos called 'Theory of Everything'. It can depend - sometimes it is the ear, if for example you've had a virus and it impacted on your inner ear. In other cases, there are no issues with the vestibular nerves, which suggests to me it is a wider central nervous system issue.
@@thebluntyorkshireman5161 vestibular migraine and vertiginous migraine is same?
@@Avinash37952 I dont know my friend, I havent heard of the vertiginous migraine.
@@thebluntyorkshireman5161 can u write the symptoms of vestibular migraine plz?
I had watched your videos, can you please write it?? Please
@@Avinash37952 Light sensitivity, motion sensitivity, head pressure, derealisation/depersonalisation, anxiety/depression, feeling off balance, face twitching, breathing issues were the main symtoms I suffered from.
Please link the lady you saw
See my other reply.
Also been dealing with the derealization for 3 months
It sucks doesnt it @@exlandscaper1933
Terrible
@@thebluntyorkshireman5161 well considering it makes me stress drink yes. It is terrible. I’m on no medication or SSRI. What is your insta?
Do you have any issues while driving?
No. I actually felt more comfortable in a car even at my worst. The motion seemed to help.
@Gretchen K. It's strange isnt it!
It didn't bother me for a while. But I started having derealization on the freeways. Would go into a crazy panic
Did you feel unsteadyness,bouncing?
Yes I felt both of those things. And rocking (like my head was being gently rocked).
Women suffer so much more it seems..I'm on yr 7 of this still trying meds ugh
Great sense of humour as always x
Can I drop you a quick msg on Insta mate?
Thanks Ricardo!