My Vestibular Migraine Story - Part 1
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- čas přidán 7. 07. 2020
- This part 1 of my vestibular migraine/MAV story focuses on my journey 4 years ago to find a physician that understood my symptoms. I was misdiagnosed multiple times, was told I just had anxiety, and no one could explain my symptoms because I didn't have headaches.
This was my journey from the initial symptoms and how I felt to how I eventually got diagnosed. Stay tuned for part 2 about my treatment plan and how I got to dizzy free days. (PART TWO/Recovery HERE: • My Vestibular Migraine... )
My Story - thedizzycook.com/mystory/
you basically just described me. I get panic attacks from them, i get scared its a stroke, no one ever mentioned vestibular migraine to me until now! ive had it for 8 years
Wow!! So glad you finally got a diagnosis too. How can we not be panicked with symptoms like this?
Thank you for making this video. This has just come up for me. I have been having anxiety and panic attacks too because I just haven’t felt right and then everything started spinning I went to the ER on Tuesday and when they asked me what was wrong I said maybe an ear infection, maybe a stroke! I honestly thought a stroke at one point. The ER said
Meniers disease, but I have a wonderful OD who knows me and she said vestibular migraine. So now we are on the path to officially diagnose and treat. Just as a funny side note, we literally live across the street from the hospital, I was yelling at my husband because I felt like he was driving in reverse the entire way (1 block) there. Then I was vomiting 🤮 in the ER waiting room and they still made we wait... well that’s not the funny, the driving in reverse was funny. Thanks again for making this.
I finally got diagnose after 1 year and half almost
@@TheDizzyCook hi hun could u help me i have this n have had constant DPDR for five months, what do u recommend for me too get rid off this DPDR to feel nornal again it's really affecting my life
@@laurenbaldwin6068 Hey - I would recommend reviewing my website thedizzycook.com. Tons of free helpful tips.
I've had the symptoms you describe for 18 months, I've been diagnosed recently with vestibular migraine by a neurologist, before this i was so depressed i thought i was losing my mind, some days not getting out of bed, i have never felt so unwell in my entire life. And i was told by people its just stress you need a holiday, not understanding at all what i was feeling or going through. Now after diagnosis, i know what it is i hope to get help. Thanks for sharing your story It's good to know I'm not alone.
You're definitely not! Here for you!
How do you treat it
I don't know. I've been to a functional Doctor recently who's running some tests, a neurotransmitter test being one, and I'm Waiting to do specialist balance testing. The neurologist prescribed amitriptyline which is horrible! I had to stop after 2 weeks.
@@Ka-hl2je it’s really hard to see someone you love suffering so much, there needs to be more research
That's how I feel now and for the last 6 weeks. Start it off as vertigo but now it's non-stop migraines as well. Have seen different doctors but I think I need to see a neurologist. The last doctor I saw said that I should see a neurologist. I have no life and I'm in pain all the time. I'm going to try to get a referral to help get an appointment at the Mayo clinic. I live an hour from there. Right now I'm just laying here in misery. Thank you for sharing.
Both happy and saddened to know I'm not alone. 👥❤
Me too
Me also😢
15 years now... you've have described nearly EVERY symptom I have.
I think that's the most surprising thing to people who find me. But after the years I've realized it's very common!
I would just like to say that your channel completely changed my life. For five miserable years I felt utterly hopeless and was grappling with severe vestibular migraines to the point where I couldn't even walk. It had me teetering on the edge of suicide. Endless doctor visits left me frustrated and angry with no answers, but your approach and experiences resonated deeply with my struggles. For five grueling years, I was trapped in a cycle of despair, barely mobile, and lost in a haze of perpetual sleep. Then I stumbled upon your site. Your extensive knowledge and suggestions on supplements were what changed my life. -1000 mg of Riboflavin, 500 mg of magnesium, and 500 mg of CoQ10-became my daily lifeline.Over three months of taking them religiously, I gradually noticed my migraines were disappearing. It's been almost a year and I have not had a dizzy spell since.. Your recipes, though not followed religiously, added a delightful touch to my recovery journey. The impact may be hard to quantify, but your contribution to my well-being is immeasurable. I'm overflowing with gratitude for the profound difference you've made in my life.
Your message made my week!! Thank you so much for this!
I'm also thrilled you're doing much better now!
@@TheDizzyCook Well your channel made my life. LOL
I feel your pain. Your an inspiration
The worst for me is the dizziness the fullness in my ear and the faint feeling
i get the faint feeling too.do you also feel weak?
@@Withcare111 i do it’s like a whole body weakness right?
@@VeronicaGomez-ot1wg yes- like you are about to faint. But I also get a fatigue which a overall tiredness.
@@Withcare111 yeah i get that almost everyday, the feeling is horrible especially since laying down doesn’t help
I get weakness and tingling too, how are you all now?
Thanks for sharing. I was diagnosed with vestibular miragrains. For months, I could not figure out why I felt this bad sensation in my body. Just simply trying to focus on someone speaking was hard because I'd feel like I would pass out. I was extremely frustrated because I was not getting painful headaches most of the times, and yet they would call it migraines. I'm still trying to figure out the best way to cope with it. When I'm walking, it feels like I'm floating and of balance. This video was helpful.
Literally have had these symptoms for 5 years..... Every time they say its anxiety it's anxiety..... And I finally got refeerd to a neurogist and today finally they have told me they think it's vestibular migraines
Glad you're finally getting some answers. It's like, of course I have anxiety dummies....I feel like I'm losing my mind all the time. That would give anyone anxiety!
This is exactly what I have been going through for the last three years. And I have been through thousands of dollars of testing. I even just had an MRI to check for a Brain Tumor (which luckily I don't). I get attacks where everything spin so much that I can't even move from my spot. I even thought I was having a stroke at certain points.
Thank you for this. I now have something to push my doctor's to test.
I was just diagnosed with this today. After 2 years of different doctors I hope this is it. Every symptom you mentioned I have. I’m crying happy tears and also sad ones ❤️😢
How do u feel now? Hope is gone 🙏🏼
Thank you for posting this! I know it's a few years old, but I just heard this term today and I am looking for answers to my dizziness. I suffer from migraines, but this wasn't a migraine. I was just dizzy. Its amazing to now know that it is a migraine! They are sending me to vestibular therapy. Here's hoping 🎉
You helped me and I know your gonna help a lot of people! Thank you so much!
I was diagnosed with vestibular migraines in 2019 and lost my job. I had vertigo attack after vertigo attack terrible depression/anxiety. 3 years later, I still feel some fullness in my ear and slight dizziness at certain moments but for the most part, I've gotten my life back. Praying for anyone who has to go through this. It's a tough condition to handle. Thank you for sharing your story. It's comforting to hear from someone else who went through this too..
Its so hard😭 at times I feel im dying
Hi, what medication did you take? I'm on venlafaxine 75mg which has worked for over a year but now the attacks are back on a weekly basis 😔
Thanks for the your story, it really is the most depressing thing ever. Never in my life had dark thoughts untill this.
@@loretta5330 Remember, we did not come to this world because we have chosen but because the almighty creator wished. So, at the end he is the one who has the full power to heal and our return is to him alone. I am not referring to Jesus or any other messengers of God but the true and only creator, the ower of the Universe.
What did you do to get better? Medication, vestibular rehabilitation? Thank you.
Thank you for sharing your experience. It mirrors mine in so many ways.
Thank you for sharing and explaining this like you did. You put words to the dizziness that is often so hard to explain!
This could be my story! I'm so glad I found you. Thank you for sharing your story and all your resources. I have had every test under the sun, including at Mayo AZ. The crazy thing is that the "headache neurologist" only asked me abut "headache days" per month. I haven't had a severe (classic) migraine in several years so I don't have that characteristic symptom. She didn't recognize that all the symptoms I have, neurological and otherwise, were VM. One of my attacks was so scary, as if I was having a stroke. I was ready to give up on finding answers until I found you! Thank you so much!!
Unable to watch the video right now but it's lovely to see other people coming out with their stories ❤ keep it up and take care mate
thank you for sharing! I went from doctor to doctor with no answers for 7 yrs until I finally was able to go to Johns Hopkins in Baltimore and got my VM diagnosis. Just moved to FL and now searching again for a doctor with treatment plan. No headache pain either, just a heavy head dizzy feeling in the back of my head...lasts for a week at a time. Also get vertigo attacks. So tough to live this way but your reports give me hope! think my "trigger" is lack of sleep. Thank you!!!
Really helpful hearing this - helps me know what to notice in myself for my doctors appointment
Alicia, thank you SO MUCH for posting your videos part 1 & part 2. I was also newly married, age 31, and wanting to start a family when I got VM. Now a year on I'm soooo much better, but I'm still mildly dizzy 24/7 and just seeing you doing well reminds me that this will end. My husband has made some of your recipies for us and we have the HYH diet info pinned to our fridge. X
Thank you so much for uploading this. My entire family suffers from normal migraines, especially during puberty. I've recently had a couple of really bad episodes, but they came with this overwhelming dizziness and inability to really walk or move. I'd had spells of dizziness before, but I put it up to anxiety. I tried to learn to drive a few years ago, but I kept having this weird feeling that I was moving backwards when the car was stopped. It was very distracting and distressing. When you said you'd had a similar feeling, it blew my mind. It seems like I was having vestibular migraine symptoms before these recent spells, but I didn't recognise them as symptoms.
I know that hearing from first hand sufferers is always better that reading medical journals, because they don't really understand the entire picture. I was pretty sure that I have vestibular migraines, but after watching this video I'm even more convinced. Thank you so much. You've done me a great service :)
Thank you! After several neurologist telling me nothings wrong, I feel better knowing there are other people who understand what this is like.
Thank you for sharing. I really appreciate all of the information you put out there and encouraging us to keep healing. 🌸🌷🏵️
I'm so happy to hear that, Erin! I'll follow up with more later!
My 11 year is son is suffering from hemiplegic migraines and now VESTIBULAR migraines. Your s and others videos mailed down the diagnosis. He already feels like he gets on a dreamlike state.
Thank you for sharing this. I just had a horrific vertigo episode happen while driving 60MPH and thank goodness nobody else near me so I could float over to the shoulder. Your symptoms really resonate. I need to learn more about this b/c now I’m scared to drive my kiddo around, or drive at all. Thanks for all the detail!
You're welcome! I have another post here you might find helpful as well as my book. thedizzycook.com/vestibular-migraine-treatment-plan/
Really looking forward to part 2
It's finally posted!
Thank you for making this video !
I was diagnosed yesterday along with recommendation of your channel from my new doctor. THANK YOU 🙏 I feel so relieved and overwhelmed and relieved it’s wild and I’m ready to begin my recovery. I felt completely helpless when doctors were convincing me this was all in my head. I am blessed to have this information. Thank you
Wow so cool!!! Glad they recommended me. Make sure you check out the website...so much good info there!
just saw this. i'm 19 and i have seemingly pressure in my head and lightheadedness. i get dizzy a lot and it's especially bad when i quickly move my head. i want to get scanned to absolutely rule out anything serious. but i'm so glad i found this, thank you for making this. vestibular migraine has crossed my mind since i can be rather obsessive to research when it comes to health, but i'm glad that you gave such a detailed, yet concise video about your journey. wishing you the best!
How do you feel now?
That's me and the madness for the last 6 years thank you for sharing
The way my story is JUST like yours, down to the trip from Asia (Thailand for me), immediate travel right after returning, and all of the symptoms you mentioned. I ignored it for years until now. I just got back from the ENT today, after thinking this was vertigo. But after listening to my symptoms, he suggested it might be a migraine. Googling has brought me to your video, so thank you for sharing!
Mdds
Thank you so much for this video!! This sounds soooo much like me. I don’t know if this is what I have but now I can talk to my doctor about it.
Everything you said is exactly me. My neurologist has diagnosed me with possible vestibular migraines and I see the ENT tomorrow. I’m literally suffering with this dizziness and you just explained exactly what I am going through. The more I research the more I truly believe this is my diagnosis. I wouldn’t believe it before because I do not get terrible migraines just normal headaches
Hi,
I hope you are feeling better. Did you end up get diagnosed?
Your symptoms sound exactly like mine! Thank you for sharing! I have seen Doctor after Doctor trying to determine what is wrong with me! Meclizine made me violently ill! I will never take that again. I just saw another Doctor yesterday who suggested that this may be Vestibular Migraines. So, here I am watching CZcams videos. After months of tests and no answers, I thank you for sharing your story! I just bought your book and look forward to making some migraine healthy meals soon. Hopefully, I can find a Doctor who can help me with a proper diagnosis, whether it is finally determined that this is the appropriate diagnosis for me or something else is. While I have only had the vertigo/vestibular migraine issues since early April, I have had a whole lifetime of migraines. It's the new vertigo symptoms that threw me.
My doctor understood, because he actually had it himself. Lucky me I guess. :), good on you for keep going! Totally understand how you were feeling! Wishing you all the best. x
How did you cure them
Have just found you and it’s a relief to know that there is possibly a permanent light at the end of the dizzy tunnel. Feeling dizzy all the time is just horrid. I also don’t get headaches with VM just a tightness in my head on the left side with internal pressure and loud ringing tinnitus right before it get an attack. I don’t get the vertigo but am very light and sound sensitive and need to get out of the area I am in asap. I have been told this is my brain kicking into fight or flight mode. I have not panicked and am usually quiet practical about conditions so thought I was turning into a an anxious and worried person which is so not me. I was lucky to go private - UK based - and quickly saw ENT specialist who sent me onto a balance professional. I’ll watch your second video to see what treatment you were recommended
Omg!! I feel like I am you. Im so glad your sharing. I was just diagnosed. But have no clue how to treat it.
I hope my treatment plan and some of these videos can help you
Thank you for sharing. I get my attacks most often after stresses that pile on back to back. It’s horrible. I do hope you your bouts don’t last too long.
I'm thankfully feeling great most days now but I do have to manage stress as well.
I am so grateful for this story…. I am struggling with this same symptoms since 6 months ago…. Just this week a Dr told me that I may have vestibular migraine…. I am waiting on my MRI results to confirm something…. Wow …. Thanks so much
Thank YOU! I needed this!
Oh my goodness you described me. I came back from cruise 6 weeks ago and have been constantly dizzy. I’ve been to so many doctors. I’m watching part 2 now. Thank you for sharing this.
Hey! Make sure you don't miss MDDS too. Sometimes that can happen after a cruise or events with movement. It can have some overlap with VM symptoms too. A good doctor can help you navigate! thedizzycook.com/the-vestibular-migraine-guide-for-dummies/
@@TheDizzyCook thank you! finding a doctor has been so hard. My appointment with a neurologist is not until June. I will watch this video. Thank you so much.
It took my consultant about 2 years to diagnose this it’s a lot better now but it’s very stressful there is a constant worry it can get worse again. Thanks for sharing your experience
Hello from the Middle East now I know I’m not the only one 💕thank you for sharing
So glad I have found you. I have been suffering with ‘vertigo’ for 4 years now. I think the ENT people have misdiagnosed me. I’m going to watch the rest of your videos, buy your cook book and hope I’ve found a way out of this nightmare. Thank you, you must be helping so many people.
You have given so many like myself hope! I have been seeking help for 2 years now and will be seeing my 6th new Dr. the end of this month!
I really hope this one is the one. If you haven't gotten Dr. Beh's new book yet I highly encourage it!
His Book was just delivered!!! I am so happy to have this resource as well!
Wow! This video is very helpful. Haven’t got diagnosed yet but sounds very similar of what been happening to me for over a year now. At first it was me just getting dizzy twice a day to where now I get dizzy while I’m asleep or sitting down and it’ll happen like 4 times a day and to where I lose taste, body feels numb for couple of days and also have brain fog/confusion.
Thank you. My Mother has all these symptoms and she is scared. I sent her your video ❤
Hi Alicia! I have came to look at your videos to know what’s wrong with me it’s been a hard 6 month first the doctors though I had bppv, but I felt dizzy a lot when sitting in my lecture I felt like swaying or like sitting on a boat. Not to mention all the lines and patterns were moving and I couldn’t focus on my class. I would leave the lectures crying and I am on my senior year, I thought about dropping out a lot. After 6 doctor visits and blood work and MRI I finally got diagnosed today, I am happy that I finally know what’s going on, and to begin my treatment. The information that you put out is really helpful.
Do you know your diagnosis?
Do you still feel swaying sister??
I been dealing with similar symptoms and my family doctor just can’t seem help. I’m so glad I found this video! I get extreme dizziness, pain in my neck, migraine, sensitive hearing and brain fog
I have exactly the same symptoms, I read somewhere that neck issues can cause migraines but for me is otherwise, for example if I look at computer screen or bright lights i get dizzy and my neck tightens up and when I sit in very dark room my neck pain gets better, so i think is is symptom of migraine.
@@memetpajaziti3434 currently
temboral mandibular dysfunction can cause all these bro
Amen on keep pushing
I’m dealing with similar issues. I get so scared now for even trying to new meds because I’m afraid it’ll make it worse. I’ve had this for 2 plus years. Maybe this is something I need to look into. It’s hard so very hard to deal with because people see you and think your just fine. Or say your faking it. It’s almost like you feel alone dealing with this. Thanks for this video. I’m definitely going to look into this.
You're definitely not alone but I know the feeling!!
How are you ?
Your video came up after searching this. I just had a vertigo attack while playing with a dog in a field. Stumbled to the house and am battling with it. I feel horrible but gotta get through this. Thanks for the video!
I hope you were able to feel better soon. I have some tips here if it happens again.
thedizzycook.com/5-tips-to-relieve-a-migrainous-vertigo-attack/
I was diagnosed with Vestibular Migranes by Johns Hopkins in 2019 after suffering with bad vertigo for a year. Treatment prescribed was dancing and ping pong. I started taking Zumba regularly at my gym and it worked! Whenever I feel a flare up I take a zumba class and I feel much better. During the pandemic that has meant Zumba on CZcams in my house. It has been an absolute miracle. I hope my story helps other sufferers who might read this.
How are you doing now?
What was his reasoning for telling you to do Zumba and play ping pong.
That sounds incredible I can barely stand without falling let alone Zumba
Exercise triggers my migraines- I loved going to the gym so I am so sad it's now a knife edge for me
My story is similar.. I've always had migraines since I was a teen but a few years ago I started having ringing in my ears. I had a hearing test and saw an ENT, everything was normal. Then the vertigo hit and I saw neuro and they said it was BPPV I did the exercises, and it seemed to help for a little while but the dizziness comes back occasionally. Now I'm having visual lights flashes and achy numbness in my hands and arms has increased. I saw my doctor again and they continue to say everything is fine. They wanted to send me to physical therapy for carpal tunnel. I've done that before with no improvement. Im tired of feeling and being treated like a hypochondriac. Something is wrong but no one can fix it. This might be my hope.. Thank you.
I hope you can find some good resources to help on my site!
How are you now?
This is me also. Normal migraines until gradually over months started losing my balances and getting dizzy. Hands and sometimes feet start tingling. I’m so extremely sensitive to lights and sounds and I am so dizzy most of the time. I can’t read or think properly or retain information. My whole life has fallen apart. Worst part is I read comments and people just say they have been like this for years and haven’t been fixed. I just keep thinking I’m so so scared.
@@jadeyardentraining4165 me too 😢😢, I’m studying abroad in few days , but I am so terrified, because the dizziness is getting worse. I don’t know how I’ll manage things , leaving my family & staying all alone. I am having severe anxiety.
@@ayushighosh22how are you doing?
I have just been diagnoses and I am 3 weeks in. Again did not believe it. I am really impatient for this to go away and worry about my job. You symptoms are right on with mine. The movement issues, light sensitivity, etc. Scrolling tablet, etc. It is like you are moving but it take the rest of you to catch up!
Unfortunately it’s a life long disease, but follow her she is right your diet affects your symptoms. It can be manageable.
I read your blog and must say you look so beautiful in that last pic you say you took....
Thank you can totally relate and god willing will find a good doctor who can guide me:)🙏🙏
So sweet. Thank you so much
Hello from the UK! I’m liv and i work in a very fast paced pub while also doing 10hr placement twice a week in a hospital for my study’s (which has been very hard lately). I have been diagnosed with vestibular migraine today! It’s been A long time coming I think l, but definitely happy to just have a diagnosis after the doctor thinking I had POTS! I feel as you feel! When walking sometimes it feels like I have one high heel on and one off! Sitting in the car I feel like the car is moving forward or backwards when it’s stationary. I see flashes and dots in my vision or zigzags. I have to wear sunglasses most the day due to light sensitivity. Even watching the TV is hard. Brain fog is one of the scary parts as I feel I can just sit there for hours with someone talking to me and I wouldn’t be in the room. Plus feeling like you don’t know the name of simple things is scary! And the dizziness omg i wouldn’t wish it on my worst enemy! Sounds mad but I even get nervous to go to the toilet in the middle of the night cos I feel as if I’m going to fall off of it! After my ‘attacks’ I feel so lethargic dazed and exhausted it’s horrible! But it’s a different kind of exhaustion, I can’t move my arms or legs, it almost hurts to speak and I feel like I’m carrying 10 pints of milk on my back! I’m on tablets but they haven’t helped as of yet. I know it’s going to be a long healing process mentally and physically! I want to thank you for sharing your story helping others around the world! You are truly amazing and i wish you and your family the best health!💖
Any relief? Also in the UK had this for 7 years everyday
Oh my goodness. I was just diagnosed by the neurologist that I had this exact same condition. I had the quickest most comprehensive vocabulary and I totally have brain fog and forgot the word for ''salad and hiking stick!" Most of the times I cant even describe the thoughts I was going to say, its like someone wiped by mind blank, it was extremely frustrating.
With my balance issues, I have been walking more towards my left as if someone is pushing me forward and then left. I had to use a walking stick just to walk, I am just 34 and Im supposed to be in the fittest stage in my life. I also have experienced double vision for 6 days straight and would have an eye appointment to see if this symptom is associated with vestibular migraines.
I am very fortunate to see that Im not the only one experiencing this, and that others are also managing to cope with their symptoms. All the best!
I finally got in with Dr. Shin Beh! I was diagnosed with VM. thank you!
I was tired of my vertigo and migraine attacks then I saw czcams.com/video/6snFi_EJWFc/video.html i started following the remedies explained immediately within few days I could experience a lot of change in my symptoms I’ve done my panchakarma with Jyovis and then the medications which has permanently relieved me and I feel so much lighter since then
I was very sceptical that the neurologist I saw today would give any kind of diagnosis, thought he would just dismiss my symptoms.
He diagnosed me within minutes,,, had never heard of vastibular migraines till today. All my symptoms matched, I was so relieved to get a diagnosis that I actually cried!!
I know exactly how that feels!! Such a good feeling to be validated
My neurologist keeps telling me it's not vestibular migraines because I don't have headaches all the time he keeps telling me it's anxiety which is starting to really piss me off
@@lucascervantes1338 maybe you can show him some of the most recent posts from Migraine World Summit about it, but a new neurologist might be best - or a neurotologist. You should watch some of Dr. Beh's videos I have uploaded here for validation!
What were your symptoms and what was the treatment the doctors gave you
@@mistyrodriguez2476 ringing in the ears and I guess it's lightheadedness 24/7 for the past year-and-a-half, headaches come and go all around my head and I feel a lot of pressure in the back of my head to my neck. I get episodes of vertigo every once in awhile everything is completely spinning and I can't get out of bed. More recently I'm starting to see strobe lights at night and I get these earthquake feelings inside my head It gets very intense but only lasts a short time. O and my anxiety skyrocketed the past five months.
Anxiety can do a lot of damage, I really hope you will overcome this. Have a wonderful day:-)
I have! Thank you!
I have exactly the same stuff thanks so much for this video. I really want to see what you did to resolve this. I have been having horrible vertigo and migraine for close to 3 years now :(
Hi I’m Reagan and I’m not fully diagnosed yet but doctors tell me I have migraine.I have had dizziness for 8 months now and it hard.But you described the dizziness so well.Thank you
So sorry!!
After seeing other peoples stories, I feel fortunate to know that I was diagnosed with this at 3 weeks. My first episode I went to the ER because it was so bad where I vomited and was falling. I couldn’t get up without assistance or falling down. In there I got admitted and saw a neurologist that was at the hospital. The neurologist said he had Two suspicions and gave me anxiety medication, antibiotics and meclizine with some physical therapy sessions to see if the calcium crystal could be place back into my ears. After 14 days of not been able to drive, thousands of dollars from the hospital visit (MRIS, cat scans, multiples tests,) crying everyday, feeling helpless, not been able to work 50% of the time, the medicine not helping and the sessions not helping, I went to the same neurologist again and he told me he was sure I had vestibular migraines. He prescribed me topiramate and that has helped me soooo much. I can relate to so many of the comments here of “feeling like a stroke” or having a “panic attack” because I had a panic attack myself from loosing control of my body, loosing balance and feeling like I am drunk without the happy effect.
how are you now?
Man you gave me tears just watching your video. I’ve been the most healthiest guy since I was born never ever had any issues with any headaches or Migraines. Till 2 years ago and my life went south. Exactly everything you said. I lost 2 great careers and I can’t even play with my own son or can’t even enjoy life and hang out w friends cus of this stupid Vestibular migraine. I live in San Antonio Texas. I went all over San Antonio and Austin to every ENT and Neurologist and Vestibular therapist. And no help!!! 2 years in and still dealing with it as I’m writing this comment. Can you please share what helped you please. I need to live 😩😩😩
Iam also suffering with VM my life went in he'll
AMBIKA R I’m sorry to hear that. You definitely not alone. This is absolutely crazy disease and worse thing bout it is there are no cures or none I found yet. I’ve taken every pill out there every. I’ve tried every diet , cut out caffeine and alcohol and anything you can think of I’ve done. It helps lil bit but never taken it away. I’m on my 3rd year now. What do you do ? And have you found any help ?
I just shared my part two video but heres also what helped me. I really hope you find some relief soon. thedizzycook.com/vestibular-migraine-treatment-plan/
Folks watching this should also consider CSF Leak and look into Ian Carroll’s video on CZcams here. It’s uttterly frustrating to get a clear diagnosis for neurological symptoms. Don’t self-diagnose- start with intracranial hypotension if symptoms came on suddenly out of blue with no Hx of previous migraines.
@@jayhannon7422 im the same way😭 ive done everything I could and no help
Thank you from the bottom of my heart for making these videos Alicia. Can I ask, did your symptoms follow you to bed? Laying still in the dark is probably my most anxiety-provoking symptom because I feel as though I'm 'dropping' through the bed and this is accompanied by a wave of nausea making it impossible to sleep.
Yes I felt same .. falling through the bed , nausea n all. N finally I am diagnosed with this problem..
@@ektadahiya5535 Yes I'd get horribly nauseous in bed too. Thankfully the lying down symptoms abated and I'm sure they will for you too.
Nobody ever posts that they have fully recovered from VM. Why? Because it’s for life. Some may say today they are fully recovered but they are always one trigger away from another attack. It really doesn’t help to subscribe or follow a fellow sufferer. VM at the end of the day is a mental illness however it’s one that you can manage and manage it well. First step, avoid watching and reading about other people with VM. You are bringing it into your world when you should be learning to ignore it.
When the attacks come, tell yourself and your brain it’s only a sensation. Keep doing it, your brain will respond and it will always only ever be, a sensation.
Take peace from what I am saying. Ignorance can be bliss.
Just been diagnosed with this. I have been constantly dizzy for 3 years. Mine also started after a long flight from Melbourne to London. I had a throbbing pain in my ears for about 3 weeks after the flight and then once it stopped the dizziness started and hasnt stopped. My vision is sometimes temporarily impaired due to seeing bright white lights in my vision (aura). I feel like I'm constantly walking on a boat in rough seas however I have had physiotherapy for this and there has been a 99% improvement with my balance but the dizzyness/lightheadedness just wont subside.
Do you still feel boat like sensation??
I've been thru so many Dr.s and specialist and the all said the same thing. So much testing that all came back normal. Saying its stress and anxiety. try this, try that. It's been horrible. I've had this for 7 years. I've been thru urgent care, Primary Dr., 3 ENT's, 3 Neurologist, Dentist, eye dr, physical therapy. Finally the 4th ENT just "this year" told me what it was within a matter of seeing him for 15min. Its gets very debilitating sometimes. I hate the feeling like I'm walking across a trampoline when on solid ground.
Wow glad you finally got some answers. I hope you're on a good path to healing now that you have a diagnosis?
I’m in bed with dizziness, nausea, & ringing in my ears now. Sunday had someone call an ambulance because I was at Walmart and barely made it back to my car. The world was spinning so fast I had to keep shutting my eyes and thought I was going to pass out. Started throwing up and cold sweats. They diagnosed me with vertigo. I had a spell a week before that lasted a couple days but wasn’t as bad. I have tried the exercises on CZcams, but only helps a little. I have suffered from headaches daily for years & occasionally migraines. Lately started having dizzy spells when I’d stand, ringing in my ears, & brain fog. Idk how to deal with this trying to raise 5 grandchildren this is debilitating.
I had an episode of this about 4 years ago lasting about 6 months. 3 doctors dismissed me as being a malingerer. I could only safely walk with a wheely walker as I was falling all the time. Walking on sponges, turning and losing balance, all your symptoms. It was awful. I have recently had an MRI after insisting because of headaches for the last 3 years. I have been found to have periventricular white matter lesions. Probably causing my severe R sided head/neck migraines up to 10 days a month. I want to now visit a neurosurgeon. My GP is not very proactive. I feel like she hasn't believe me. The MRI has shown something but I I am not sure she knows what to do. Except wait and see. I want a plan if possible.
Thankyou for your video. The symptoms were so accurate to lots of mine. 🧸
I am 16 and have had this for over a year. It started after a plane ride and it feels like i’ve been on a roller coaster everyday since then. I never leave my house and some days can’t even walk into the next room. I’m scared for how it effects my school life, it seems like it’s never going to get better!
same :(
How are u doing now?
Prednisone was bad a idea. The ENT should have referred you to an otoneurologist right away. Vestibular migraine can be treated with Riboflavin, and GABA, Magnesium and regular sleep cycles. Also, stay away from chocolate and coffee. Stay hydrated.
My gosh. I could have written this whole thing. The last few months have been hell for me.
I'm going through exactly what you have said in this video. Unfortunately I'm still going though it. Just a couple days ago i made appointment with a neurologist. I'm hoping i can get some help.
I have a lot of tips on thedizzycook.com that can help too
Mine started with a migraine which lasted two weeks. Like nothing would cure it. Then it manifested in eye twitching ( which is constant!)
And then the dizziness attacks with what feels like full blown panic attacks. It's very scary and then the anxiety makes my overall nerves feel frayed and sensitive. 🥺
Did you find any thing that worked for you that’s exactly how mine started I’m so scared
I've had a few vertigo episodes in my lifetime, but over the past 2 years, the severity of them has increased. I am 36 years old, almost 37. Recently I had 2 non headache vertigo episodes that lasted hours and made me sick to my stomach. The last one I had a couple weeks ago left me in bed nearly all day. I have also been complaining of headaches, head pressure, and eye socket pain in the past few months to my PCP, in addition, this May I also developed a weird sensation in my right ear, like a pitch on the right side of my brain area, and now my left too. Everything has piled up. The ENT PA thinks it sounds like vestibular migraine. Considering how many have taken years to get diagnosed with VB I guess I should feel "lucky" to have a possible answer to my symptoms. I don't have a treatment plan (meaning no medications). I just got a referral to physical therapy and was told to take Excedrin for vertigo episodes ( I read that could be a bad idea) and then to follow up with PCP if these don't work. In short, the ENT PA is not taking me seriously. I really wish this could just be a temporary bad break in my life. My anxiety isn't helping and sometimes I am not sure if I am making up my symptoms or if they really are there.
I have had vestibular migraine for years now and is havjng it rifht now. Everything symptoms that you have said I have them all. The exact aame symptoms. I have had 4 episodes in the last 6 months.
OMG I have been going through the same thing. I know how you feel
No headaches for me either 😢 i have all the others, its so hard, i hope i can make a video like this one day and have my life back. 7 years and im holding on to hope
Oh YES! This is the first and BEST explanation of my vertigo I’ve ever seen! I’ve had mine for a full DECADE! June 2010!
No one could understand what it was when mine started, either! I’m not even sure if vestibular migraine had a name yet when mine started in 2010.
I began with a regular ENT doctor and moved on to same type of specialty center connected with Mayo Clinic and they didn’t connect it with Vestibular Migraine until I returned just a couple of weeks ago! I found your video because someone posted it to the Migraine group I joined on Facebook.
I already suffer from the mixed up brain because of a traumatic brain injury (TBI) and epilepsy. I couldn’t get the Government to recognize my vertigo as well. (They wouldn’t recognize my TBI, which gave me epilepsy. 🙄)
Thank you for sharing this with us! I’m sharing this with friends and family! Thank you! Thank you! Thank you!
So glad you found me through that!!
I discovered at my last appointment that they have known this is a “thing” since 2013, but I fell through the cracks. Thank you for posting these videos! I will probably share this one with my PT next time I go. I told her about your videos. She recommended ginger. My neurologist started me on the smallest dosage of “Topamax”. It’s a seizure med I’ve tried in the past, but it’s also for migraines. Doesn’t really help me with this. I’m already on 2 seizure meds and another for sleeping sometimes at night. (Noisy neighbors) I don’t want a fourth. Seems excessive.
THANK YOU!
Me too, 2010 😢
Hi! Geeetings from North Macedonia!
Firstly I wanna thank you from my heart for this video because I find myself in it, I had and still have the same symptoms, doctors did tons of medical tests including MRI and such but nothing was found ever and anxiety was blamed for it and I knew it that it was something else because for me it started with balance issues, I was at college and was studying hard for exams and I catched a cold then I had dizziness and balance issues for a week and then it resorved on its own which doctors thought it was labyrinthitis but 1 year after i had very stressful event and the dizziness hit me hard and it turned to daily dizziness, lights made my head feel heavy and when cars moved it made my dizziness a lot worse, as time passed i got new symptoms such as flashing lights and pain at base of skull which never got better despite I tried to stay calm and take some natural supplements and doctors couldn't figure what's going on with me. I read a blog of you for vestibular migraine and I thought probably i have also so I tried some diet changes like not eating cittus fruits and I felt better immediately, my vision and balance improved a lot, so probably I have vestibular migraine ? But the fact that I had a cold or flu at first makes me thini probably is not VM but labyrinthis which flares up from time to time. What do you think ?
Mine began after a cold as well. VM can be triggered by a lot of things, especially if you have migraine in your family history. I had never had migraine attacks in the past, but I do have family members that have it.
@@TheDizzyCook thank you for your kind replay, to be honest my father and grandmother always had a headache (probably a migraine), so it's kind of genetic and thus I have those symptoms.
Hello, I'm from Germany and I'm struggling with the same symptoms for months. It began in April after a cold, too. Thank you for the video. Wishing you both the very best and blessings
@@zweirabenaufabwegen reducing caffeine intake and milk products made big difference for me, so probably is vestibular migraine
On day 2 of a VM, had to call out of work yesterday, again. I work with screens for 12 hours a day, and I don't know how much longer I can do this job, which is something I love to do. How did you cope with that change and figuring out what to do?
I started to deal with migraine after a jet lag too
I had this constantly for months. Felt like I was on a turbulent boat. One day I got a really bad migraine and went to urgent care where they gave me a shot of imitrex and BAM, dizziness went away. After months of seeing different doctors I realized it was migraine related. Why don’t neurologists look into this as being the cause?! So frustrating!
Hi Dizzy Cook,
Did you ever feel motion sick even when you were just relaxing/staying still at home? I’ve had all the crazy symptoms everyone else has, but now I can’t even relax without feeling sick! Have been diagnosed with both vestibular neuritis and vestibular migraines.
Thanks for sharing this story. I'm only halfway through but I couldn't wait to comment. It BOGGLES my mind, I simply do not understand how a string of ENTs, neurologists, and vestibular doctors who have dedicated their lives to helping people with your exact symptoms are......unaware of vestibular migraine as a cause. I just don't understand. I'm saying this dispassionately. Can anyone explain that? It's not like it's an uncommon source of these symptoms, and these professionals should be in contact with people suffering from VM literally all of the time. Maybe I'm confused about how rare it is. Anyway I've been nauseas for a week and now I have my computer on 1% brightness while I'm wearing sunglasses in the middle of the night, also slight motion w e i r d n e s s. 2 years ago I had severe severe vertigo out of no where, just got out of bed and felt like I drank 20 beers, and ended up in the hospital throwing up every 90 minutes for about 10 hours. I went basically undiagnosed, my ENT said he thinks it was vestibular neuritis. But here I am in this moment feeling something sort of similar, much less severe, much more tame, but eerily similar. Zero history of migraines in myself or my family, but something is awry in my lil brain =(
Anyone get dizzy after they eat with the rest of these symptoms?
Every time I eat about 5 to 10 minutes after, I'm spinning. :(
Yeah I get dizzy almost every time I eat usually worse at night
I used to. The diet really helped with this.
Molly MCgee that's me. I always feel fainty and extremely dizzy after food.
Yes!
My mom went to a balance specialist and the A.D told her that she have this. I don’t like to see people suffering from such things specially my mom. Now, have to wait for the doctor to send some medications.
Have had regular migraines for years. Got back from long drive to Texas to see eclipse and had first vertigo attack that lasted hours and it was awful. Nausea, and some pressure in head but no real pain. Started topamax a couple of months ago--small dose--but neurologist relative over phone says that's probably not it--it's 2 weeks now and I still get profound vertigo if I move my head wrong. Haven't gone to doc yet--may next week. Last night I almost fell backwards doing nothing. Putting eye drops in makes me dizzy too. Thank you for your video--what makes it hard, besides being a woman, is that now I'm a senior citizen so I will have to cope with ageism and the "it's just old age". But I don't think it is.
Hey - FWIW I had a lot of followers who struggled after the eclipse. I live in Dallas and I even felt off for the rest of the day. And I've been feeling really good lately. A good rescue plan can help for the vertigo: thedizzycook.com/acute-treatments-for-vestibular-migraine/
My dtr couldn't drive or go inside shopping stores, restaurants etc. Suffered for 3 yrs. Multiple tests, meds. Gabapentin, klonopin etc which helped. But EFFEXOR was the game changer.
My ENT prescribed me this Medicine for my Vestibular Migraine. He said it would take 2 weeks for my Vertigo that I had had for 6 month's to go away. I took one pill at 10am. By Noon it was 80% gone. Cool......At 2am the next morning I woke up with a blinding headache. Since I don't suffer from Headaches I thought..I better check my Blood Pressure. Yeah 197/121. Off to the ER I went. Just a heads up if you don't want to stroke out.
Was diagnised with vestibular neuritis by ENT with no nystagmus. VNG caloric showed weakness on right, tho I don't understand if there is a normal baseline to compare left side to. Multiple hallpike tests by ENT and vestibular therpaist, who thinks its not VN. Daily dizziness(some days worse), hyperacsusis, tinnitus both sides/central for about 4 months. Head pressure headache for hours some days. Inner ear sensations both sides, tonal fluctuation right ear, with occasional sound distortion. Clear mri without contrast according to radiologist. Waiting on a CT scan. Some light sensitivity. Vestibular therapy has not helped so far. Dizziness increases when bending over or other positions. Less when lying down.
Brain fog and extreme fatigue for over a year straight, worsened since onset of dizziness, tinnitus, hyperacusis. Constant eye floaters started close to inner ear discomfort 14 months ago. Opthamologist sees no eye damage. Eyes tire as day progresses.
Jaw ache, discomfort that fluctuates. Crackling with movement.
Never have true vertigo that I know of.
Now suspected vestibular migraine. Does this show as a chronic state of symptoms daily? Was prescribed yesterday gabapentin 100mg 3x daily. Took a few and woke up feeling worse all day today. May be unrelated. Meclazine and sumatriptan as needed.
Been to so many doctors and practitioners for over a year with no clear diagnoses. Could be multiple things going on.
This is me to the T .. so I was diagnosed with chiari malformation 3 years ago and since then I've had what I call spells it's like all of a sudden I'm drunk feeling and vomiting and bad head pain .. which lead to cervical dystonia and vestibular migraines .. I'm so glad my neurologist figured it out for me! But my life is still spinning daily !! And now I'm fighting for disability 😭
How did you find out you had chiari malformation? I’ve been wondering about this. I’ve had 3 MRI & all doctor say I’m normal. But my occipital lymph nodes have been swollen almost a year now & painful to touch, but they say nothing is wrong.
@@alisonliljenberg892 I found out after I had a bad vertigo spell that ended me up in the ER and it lasted 2 weeks and so my neurologist sent me for a mri and that's when we found my chiari malformation!
I’m going to watch your other videos. I’ve been dealing with this for 5 years and the drs just said migraine and nothing they tried has helped . My world has gotten so small and I’m too scared to drive . Wow everything you said is what I deal with and I actually started crying .to hear that I’m not alone and that there might be help. I am 5 hrs from anywhere that might be able to help. I’m basically fighting dizzy spells all day. I can’t shop in stores without ear plugs, a hat and shades and even that isn’t enough for the light sensitivity . I am at a place where I’m feeling like I cannot live like this anymore. I am a pianist too but now when I sit down to play, I get dizzy and the confused . I think the confusion part of it’s awful . I didn’t realize that the confusion was related for a long time. I just thought something else was wrong with me. I’m at the end of my rope . Gonna listen to your videos and try to make a plan . Thank you hey I also struggle with bad blurry vision . Did that happen to you?
Yes definitely had all those things!
Hi, it's been 2 years, how are you?
@@girlgonewoof so the new shot “amovig” is helping a lot. It took a couple months . I give myself a shot once a month . It’s Botox but it’s absorbed into my cells . It’s a newer thing . I’m about 80% better with that and recognizing triggers . I’m going through chemo though… again. I have a cancer called multiple myeloma and they think it’s been damaging a bunch of my nerves . So the amovig helps with relaxing muscles and numbing nerves .
Thanks for asking
@@heatherscancerjourney I hope you will get better❤️
For over a year My past symptoms: dizzyness,(vertigo)strange vision almost like a white snake slithers into my vision start to see almost like a blur or white spotted hole with contusion,tierd alotmwant to always sleep.sometimes driving is scary.balance feels off.I will wake up dizzy almost feeling paralyzed in my head 🗣️ stuck! Lost in conversation.loss of fime.anxiety,feeling moving like the ground under me as if im falling when im standing.lour ear 👂 noises like a beep.pressure in my head nose area,ears will feel full.times id feel warm like im coming down with a flu or something.see things like ppl walking around shadow ppl i will call them ... praying for healing for everyone! Even Myself...
Thank you 🙏 I just got diagnosed with Vestibular Migraine too, after seeing ENTs, Gastroenterologists, and a Neurologist.
Mine came without a headache either, however with nighttime vomiting.
I’m on a Topomax dose now...
Has the topomax helped?
did you have symtoms every day?what does of topomax are you on?
This is my storyyyyyy
Hi from UK
Really hope your recovered or recovering!
I have had mild swaying and humming sound in ear for about 10 years, but recently a real spinning attack, and since then constant rocking, swaying, fog, light headed, eye strain, and the constant feeling of on the border line of going in to spinning dizzy. I think my anxiety has been way over. Had mri all clear, got nero appointment coming up, ent ok. These are main issues...My senses feel strange, feel slight numbness on one side near eyes, but mri clear, which is great news but can't explain these strange things, strong visuals of wavy/rocking and brain fog, sometimes this real strong feeling of having what feels like a brain fit, like my inside head is being shaken leaving me in a state of being disconnected - ringing in ears also and pressure feeling. my ent consultant believes I have PPPD, but a lot of people I seen online seem to describe it as dizzy spinning feeling and more so when head moved etc, but mine is less so spinning but feels like can be any minute, but mines constant swaying/rocking. Can anyone relate? thanks
Yes I have my recovery in another video on my page and here - thedizzycook.com/vestibular-migraine-treatment-plan/
I also didn't have many spinning attacks. Rocking and swaying is very common
@@TheDizzyCook hi, it's hard to tell if this is what I have. My ear derp inside feel like it vibrates, when I looking around 24/7 swaying and seems to be in line with this inner ear vibrations/fluttering feeling. Always feel like going to start true virtigo. Eyes feel weal, and lught numbness around eyes, temple on same side. So hard to get a true diagnose. Thanks for your help.
It was 2 yrs for me then I got an appointment with Dr Noe at Mayo Clinic Phoenix and gave her all my symptoms and she said " sounds like you're having a migraine" and she was right, all the other rural doctors didn't believe me which usually means they don't know and don't want to admit it.
its really sad it takes us so long to be diagnosed