Hey guys I finally thought I would start documenting my journey with chronic vestibular migraine. If anyone has any advice or has suffered the same as me please do comment! X
Thank you for sharing your struggles with this terrible condition. I’m so sorry you are going through this but please know that by sharing your story you are helping others like me feel less alone. I admire your courage. My own rollercoaster journey with dizziness and vertigo started this past April. I was initially told by my ENT that I was probably dealing with Ménière’s disease but have since been told that it’s vestibular migraines. I’m experiencing photophobia right now and chronic dizziness 24/7 along with severe attacks of vertigo that can last anywhere from 10 minutes to 6 hours! Thankfully the vertigo attacks are less frequent than before but their randomness and unpredictable nature makes them really frightening! Compared to other illnesses I realize that VM is not a terminal condition but it is certainly life altering. I’m really struggling to stay positive right now but I haven’t given up hope that things can get better. 😔
Hey Amy! Awesome to actually listen to you describe all of “our” symptoms vs just reading them on our mutual platforms. I was diagnosed with VN mid 2020 and the Dr. (Otolaryngologist) added PPPD later that year. You are so spot on how this is always with us, it just varies in intensity on a daily or weekly basis. So many different symptoms, it’s just crazy! Based on what you have said Dr’s have told you about VM, that may be part of my situation as well. I, on fairly rare occasion will get Aura with wavy lines in my peripheral vision. I can usually tell when that is coming on because my vision changes where letters start missing when I’m trying to read. Usually lasts 30 to 40 minutes. My worst symptom has to be feeling “off” or dizzy just about 24/7. As you said, it varies in its intensity though. My other symptoms include: neck pain, ear fullness, balance issues (if I ever get pulled over by cops and they want me to do field sobriety test I will tell them forget it, let me blow instead. I would so fail field sobriety tesr🤣). ---- thank you again for sharing your story! Have you ever checked out PPPD and Life on FB? Take care! Wish you the best!
Everything you said I’m Experiencing this all day .. going on 2 months in..seen 16 doctors and no help.. I’m learning more from TH-cam then the doctors 🤦🏾♀️ thanks for sharing
You're not alone with your feelings and symptoms . Struggling with this chronically for about 5 years now 😢it created anxiety and depression as it's never ending.xx
Every single thing you said I have. I’m already diagnosed with VM but just knowing you have the same symptoms as someone else can help ease the anxiety
This video is still helping someone! Me! So thank you haha, it’s been a wild time lately. It’s good knowing I’m not alone or crazy. Thanks again. Best of luck to all of us.
Yes!!! I've been dealing with this for so many years. I'm finally being referred to a neurologist. I get what feels like ear migraines!!! Dizzy,floaty feeling. I feel like I'm in a daze and at times, the daze is so bad that my eyes cross. I've not been diagnosed yet. It's so stressful. I feel like I'm on an elevator sometimes and also like I'm going to fall. Thanks for the video! 💖
This is how I feel too. I've been experiencing this on and off for around 6 years. I have blocked left ear feeling, pressure in left side of the head, tinnitus, crossed eyes occasionally, floaty feeling, feeling tipsy/like I have a hangover, knocked sideways, bright lights especially when driving at nights are horrible and makes my eyes and head feel like they are somewhere else!
Amy i ve been speaking to you before on facebook but now came across your video while checking for vestibular migraine on youtube and its incredible how each one of our symptoms are exactly the same. And mine also started after a virus and a vaccine. hang in there sweetie :( i hope somehow we can go back to normal and live our life .
Sofia Domingues ahhh I hope this could reassure you that it isn’t just you . This may be an odd one but how old are u? My doctor said age and hormones play a part and I turn 30 this year. I pray our bodies calm down and we have to keep trying things untill they do 🙏🏼💖
im 36. That would make sense ,hormone related. I just cant get my head around this misterious illness. It's so depressing to want to do so much in life, and just like you said not even be able to go to the movies or anywhere, even at home i feel awful all the time and completely isolated. Life has totally stopped for me. And the fear is always there of what if i do not get better :( I hope you make more videos, im pretty sure it can help a lot of people like us. It sure did help me. But I hope the next one will be a video of how you are feeling so much better and found the perfect meds to finally beat this ! :* 🙏🏼
I really feel your pain lovely and often feel the same. I have made some baby steps in recovery from when all this started last October so I know we can all get there it’s just a hard road. I’m always here if u need to vent lovely xxx❤️
Maleine I can relate to you all of your symptoms. I have been having migraine for many years too. Most of the time I feel like it is taking over my life completely. I want to thank you for sharing and making an effort to make this video. You are not a lone.
Was diagnosed with VM after 2 years of hell.. this shit nearly cost my life. Luckily I had my wife& Kids by myside they keep me going threw this Bs .. only now I have gotten on medication . I hope everyone that has this condition get better soon. stay strong people .
How you doing now bud? If you're better what medications did you take? Also did you ever feel like you were almost going to faint if you got up from a chair or kneeling down?
I have told my wife numerous times that I wanted to cut my head off! I am happy I am not alone with that thought!!! Thank you for sharing your journey.
Oh Amy . I have everything you describe here . The vision is exactly like that 24/7 and I’ve never heard anybody else say they have it . I’m in absolute hell dizzy 24/7 too ears the sane as yours .. so horrendous
Thank you for sharing. I have the same EXACT symptoms. Been dealing with this for 6 years. Started after the birth of my son at 21 yrs old. till recently I was diagnosed.
I have this too for going on 2 years now. I went to an ent had an allergy test was told I'm allergic to nothing. I did pass a hearing test and passed the epleys maneuver test. I was sent to physical therapy for vestibular issues I went to one appointment and was shown stupid eye exercises that do nothing. I have been googling the heck out of my symptoms and finally found that it most likely is vestibular migraines. Thanks for the video I to have all these symptoms. Dizziness head eye ear forehead pressure. Sometimes feel foggy or wanna faint. I feel like everything else is totally still but I'm the one moving or rocking. It does it even when I am laying down or sitting or standing or walking. When I first got it it seemed a lot worse than what it is now. I had sore jello legs from trying to always overcompensate my balance trying to literally hold myself up and still... Driving makes it better for me being in constant motion seems to make it a lot better. I have always had bad health anxiety since a kid and still do so it exacerbates it. I can start to feel dizzy and I immediately start to have anxiety and panic attacks because of the dizziness. Trying to see if I should go back to the doctors and tell them I think I have diagnosed myself since the ent basically threw me under the bus.
Farrah Capps hi farrah I am so sorry ur suffering for so long! Did the ent test your Inner ears ?? As I had to have this to rule it out also I highly reccomend seeing a neuro otoligist not sure where ur from but I know a few good ones here in the uk xxx
Wow this sounds so similar to what I have. Been feeling dizzy and vibrating vision 24/7 the past 4 months. I think anxiety set it off, so I'm gonna try SSRI's
I 100% agree for me my worst symptoms right now are the dreamy feeling and things just not looking how they should if that makes sense ? Are you still on medication ? Can’t wait to watch your yoga videos such a positive thing to do especially with mav :) x
Amy Shockett I had the dreamy feeling for months before finally being diagnosed correctly. I take 75mg of Effexor and it’s helped. I’ve recently added magnesium citrate to my daily routine and I got even better until I ate a lot of dairy for a few days. Now I’m having a doozy of a migraine (off balance and mild vertigo). This condition is ridiculous.
I have the same problem with things just seem all wrong in my head instead of my head feeling the right way and I have the true occipital neuralgia it hurts so bad and when it's not hurting so bad my head is still killing me with a pressure pain my vision is so blurry it is scary this all scares me so bad. I go for a nerve stimulator next week am really praying it works!!!!
@@BridgetWeedon heyy did your depersonalization go fully away where u returned back too who you were and how you were before you got depersonalization, and did u have brain fog?
Hi Amy my symptoms are the same my head feels like a washing machine it's awful I've tried all the meds but like you not gave them a chance to work it's sending me insane thank you for your video they are very helpful
After being severely ill as you were.. I would go to a naturopath or holistic dr and get tested for mycoplasma and Lyme disease. Lyme disease doesn’t just come from ticks and a secondary infection like mycoplasma is an air borne illness as well. It can break the blood/ brain barrier and cause severe neurological illnesses. I am dealing with all of this now. Good luck my friend.
Will holistic drs test for those things?? I live in the united states, and drs seem to take a 31 year old with no medical history or issues like a joke. But ive been experiencing this since august! The more research i see, ive seen a lot about lyme disease!
Thanks for posting your video! I feel I've had this for a few years but not really bad until November. It hit me like a ton of bricks while shopping in a hardware store. Thank God my wife was with me, I could hardly walk, breath or function. I've seen my Doctor a few times and I think he thinks I'm crazy! I did manage to get an MRI appointment that is in two weeks. It wasn't until two days ago searching the internet for CBD oil relief info that I came across a Vestibular Migraine video! As they described the symptoms I was shocked, I'm not crazy... its real! Again, thank you for taking the time to post a video.
100% what I'm feeling. I feel so disconnected from my body and feel so spaced out and my anxiety is through the roof.. at first when I got it things were moving and colors were really bright for me and i was so sensitive to colors. My peripheral vision has gotten weak and it feels like i'm crazy and feels like i'm always floating.
Thank you for posting this it helps a lot, they told me in 2013 I vestibular neuritis, now they said I have PPPD,, I can’t drive at night because the light bothers me and also in the daytime I can’t go without sunglasses,, I mostly have the blinds call down in the daytime I live like Dracula..lol,, I know the weather sometimes makes it worse and sometimes I eat salt or sugar that makes it worse is anybody out there have anything to say about your eating habits it makes this worse then before?? Sometimes I can’t even think of what I’m saying and I can’t even look at my cell phone with the brightness because it bothers me so bad,, also the TV on loud noise,, it has been a real challenge, I went to therapy rehab it helped some for a while but it just comes back later on,, I have gotten better but they told me that it was the zoster virus that hit my vestibular,, shingles,, is anyone else out there had that happen to them?
Thanks Amy for the video. I have the derealisation and my eyes are not working well. It’s like looking through someone else’s lenses. I feel it affects my ability to process and read information on a huge level therefore I’m unable to work.
I started to get dizzy spells about 3 years ago.Many times it was brought on by my PC monitor.At my worst I was 12 hours on the floor after an hour of vomiting.I remember crawling on the floor ,eyes shut, to reach the bathroom.Once or twice I was out when I suffered attacks.Absolute nightmare.Eventually it all faded away but it took many months.I remember wondering if I could face it again...basically contemplating suicide.Anyway it is back again but not as acute as previously.Just had 10 days of fluctuating dizziness.I spend many hours lying down wondering if I will be able to get to the shop.I do have tinnitus and partial deafness in one ear but my attacks always seem to start with my vision.
I've been going through the same thing, 8 months now. ENT, neurologist, physical therapy and I'm still having daily episodes. Driving and things moving in my peripheral vision seem to set it off. Sometimes I get the rocking boat sensation, other times I feel like I'm experiencing Gs. I've had CT scans, MRIs of my entire spinal column and brain, spinal tap to test for meningitis, and tested for Lyme disease. Vestibular migraine or atypical vertigo were the only two diagnosis they weren't able to rule out. It was also brought to my attention that pinched nerves in the cervical spine due to stress, or anxiety could be a trigger. I went to a chiropractor 5 times over a 2 week period. After every session, I was worse. I mean, so dizzy I could barely stand up. But about a week after my last session, I went from being dizzy all day to having a couple episodes a day. It's far from gone, but now it's tolerable. Another thing I thought of while watching your video is Meneires Disease. The full ears is one of the biggest symptoms. I really hope you find answers. I hope we all do. This is such a frustrating ordeal.
April Wolfe hey April I’m so sorry to hear ur suffering too. I don’t get the full ears anymore only one at the beginning . I’ve had every test under the sun and been diagnosed with Vm had this since 13 so they’re pretty sure . I saw a cranial osteo and Chiro and neither helped tbh :/ so I’m hoping the meds I’m on kick in soon
Ugh I get awful vertigo in Tesco. I'm pretty sure it's the lighting. I had to leave my shopping basket in the middle of the floor and leave once! Didn't shop there for a while but now I'm ok there.
Your very spot on with the de realization, extreme depression, the vision issues and the full head feeling... have you had any visual snow? Have you been able to workout/go to work?
nick champeau yes get visual snow daily ! After a year I can workout and I do work and did the whole way through but I work for myself other wise there’s no way it would have happened . It seems recovery is very very slow with this illness
I have exactly the same thing and you are not crazy. EVERY SINGLE SYMPTOM. I have actually collapsed and been taken to the hospital in an ambulance. I know how you feel you are not alone. This is an isolating condition. Anti depressants have helped me.
this sounds very similar to my experience. I was recently diagnosed and the dreamy, derealization feeling is the worst. I also just have times where I feel like i'm not blind but my brain cannot process what I am looking at in front of me. Like if I open my refrigerator to look for something, I cannot scan the items well to find what I need. Medications have been so trial and error - I was a zombie on amitriptilyne. I am trying topomax next I think, but tried gabapentin as well (probably misspelled that). Each day is so hard. I definitely have days where I am probably having an actual migraine, and then days where the symptoms are just leftover from my vestibular system being out of wack. I never truly feel not dizzy. Thank you for your story!
Taylor Zaborski ah Taylor I get that all the time that’s a good way to describe it ! It’s crazy how many suffer with this awful illness ! I think it’s hard finding a med that works but there is one for all of us . I’m still trialling meds couldn’t hack ami now on nortrypryline . I hope topamax works ! Did gaba not do anything I’ve heard good things about it ? X
gaba made me feel more vertigo, and I stopped after one dose. Maybe if I tried it longer, it would work, but I am getting frustrated with side effects so my patience is not always there. best of luck to you on your medications!
Eddie Ross I’m so sorry you have this too Eddie . I have seen ent peter savundra at the Portland hospital and also neuro otologist dr surentherin in Harley street . Have you seen anyone yet ? Dr s is very good . Not sure where you’d based?
Amy Shockett I managed to convince my GP to prescribe Amitriptyline and she was very good at researching MAV with me. I plan on seeing Dr S I’ve heard big things! I’m in Manc so a bit of a mission to get there but 100% worth it!
I mean tbh if your gp is that good you may aswell save your money ! All he will do is prescribe Ami first anyway lol. Ur gp sounds very good! Has the Ami helped at all? Nort was good for me but my heart rate got stupidly high on it !🙄
Amy Shockett Yeah she was great. Saw NHS GP 5 times, A&E etc, no help. So went private GP and here we are! It’s only day 3 for me so we’ll see. Did you feel really fatigued on the meds or just heart rate? That must has freaked you out a bit!
@@eddross I did Amitriptyline about 7 years for migraines and it slightly helped but the side effects were too much. Dry mouth that was unbearable and difficulty urinating. Let me know if you had any problems with it and significant of relief you got. I say it reduced my migraines by about 1 day a week. I have 3 to 4 a week.
great description of vestibular migraine. I have the same condition and it sucks. But there is no reason why it won't get better. Have you had vestibular testing just to rule out inner ear conditions. There is also something called pppd that is similar to vestibular migraine and can coexist with each other. I would recommend having a proper vng test to rule out an inner ear condition. Trust the doctors and you will get better!
ed miles thanks Ed . It’s good to know I’m not going crazy! My symptoms do feel so not normal to me anyway! In the past when I had this I had all that testing came back clear I am due for Balance testing end of next month I’m hoping it comes back clear again . Do you have ur Vm under control? The dream feeling and visual stimuli stuff is my biggest issue atm x
I hope the tests come back normal as well. my vm is not under control yet i just got my balance testing done for the second time and it came back normal so now i am going to start medication soon. The visual symptoms you are describing are called oscillopsia. They can be a sign of bilateral vestibular loss. The vestibular testing will tell you the function of your inner ear. If you can you want to get a VNG test with water calorics instead of air calorics. Also you might want to look into rotational chair testing. It is the gold standard for bilateral issues. how has your vision been lately?
ed miles thanks Ed I am due to get all those tests however I had had most of the visual symptoms before and both my ears were fine then so I’m hoping for the same result 😬
Yes.. thank you for making this and tell me about this. I have had all those symptoms and drs are stumped. I have the constant dizziness and lightheadedness 24/7. Feels like my brain is vibrating most of the time. I have the pressure and the vision trouble and im depressed and very anxious
It’s a horrible condition. I was diagnosed about 4 years ago. Constant lightheadedness, head pressure, sometimes it felt like the ground would drop beneath me. I’m on a daily preventative which has helped tremendously and I’ve been really good. I’ve noticed that dairy triggers a bad migraine for me. I woke up with vertigo yesterday and it’s lingering into today. This really sucks.
Bridget Weedon hey Bridget thanks so much for the message so awesome ur better what’ preventative do you take ? I think dairy is a trigger for loads of people mine are hard to figure out as my Symptoms are still 247 x
You sound like me ! I also now go to a private gp nhs were useless!!! Just shows you! Yeah I’m a trainer so I’m super aware of my heart . I’m so high energy it takes a lot to make me tired but anything I had went after a few weeks you def have to give it a month :) do you also get the foggy head feeling ?
Hi Amy 👋🏻I was diagnosed beginning of 2016 with Vestibular migraine. I had all the symptoms you describe. Countless dr, nuro, mri etc. Eventually my Nuro put me on dosulepin (we call it dothep in Australia). After a month or so my symptoms started to go. I still suffered from the occasional dizzy spells or quick vertigo feeling but sooooo much better. Eventually I was able to drink alcohol again. I never could because I always felt horrid and “drunk” when first afflicted. I still get horrid pain migraine but I’m happy to deal with those alone and not the dizziness. 3 years later my dr recommend me try to come off the Dothep. I tried and everything seemed fine till recently.. all my symptoms came back. Living hell. It seems the dothep was still working well. I’m back on it now and 2 weeks in at my full dose I’m feeling maybe 30% better so I’m hoping I get back to 90% in the coming weeks. This condition really takes a toll on your sanity and anxiety/depression. You have to stay strong and know you’re not alone and through sharing information we all have a better chance of informing dr’s to diagnose people earlier. I must have spent thousands getting diagnosed. Anyway after living with this condition for 3 years I can tell you it can improve and don’t give up. If you want to talk more please don’t hesitate to connect.
A_maria S thanks so much for your message really means a lot just to hear others go through the same . It’s truly been a horrible few month I started nort but only at 40 mg it’s helped some but it’s only made maybe 30% difference in 3 months so going back to my neuro to see what to try next . I actually tried dosulepin for a week and saw loads more benefit than nort so may ask to swap back can I ask what dose got you to feeling more yourself ? I definatley have felt lost and depressed since this started its mentally very hard to deal with especially when the symptoms can make u feel like your going crazy I am happy to hear it worked for you but so sorry you couldn’t come off :( did your symptoms come back as bad as before ? It’s scary to think of not coming off meds . And yes I agree that’s why I made this video because I figured it can’t just be me suffering with this ! Xxx
Amy Shockett honestly I’d rather be on it and live a normal life.. maybe one day soon I’ll try again, perhaps when I want a baby but till then honestly I don’t see any benefit trying 1000 more drugs when one does the job. The only side effect is that I’m more aware of my heart, but I’m only 29 and try to get regular ecg to check my heart health. I started 3 years ago on dothep at 25 up to 50. Now I’m on 112 (1.5 of 75) a night and it seems to be my best dose so far. It’s taken about 3 weeks for me to see the effects again but even since I messaged you last I’ve improved to at least 60%. I’m not a dr (clearly) and I don’t like pushing drug options on anyone but honestly dothep saved my life. If your dr says you can go back on, and your side effects aren’t too bad I’d recommend trying it for at least a month if you can. Hopefully you get some relief soon. Again please don’t hesitate to ask anything, us dizzy folk need to stick together!
A_maria S thanks so much Maria :) I just turned 30 so I’m a similar age and like you I think the same about having kids ! Can I ask did you ever get the spaced out dream feeling and also visual shimmering heat kinda like when you look in to the distance it’s like looking through a gas fire ? These are my two symptoms that are prob the worst atm. You have def made me want to swap to dothep again and as I am on a tca I can make a swap so def think I will do this before giving up. I felt a dif in 5 days last time but I find it odd I’ve felt not much on nort considering it’s the same type of drug :/ I agree with you about coming off and so happy the dosulepin is working again. Could I ask did it make you totally back to normal last time ? This is def my biggest fear again thanks so much for ur kind message it means a lot and it’s so nice to talk to others who get it :)! Xxxx
Amy Shockett I get visual interference. It’s like a tv static over my vision, usually the brain will take some months to accomodate to this and will eventually see past it. I still get that the most I think...but when I was on the dothep for 3 years - yes the dizziness practically disappeared. Today I was able to drive to the shops and walk around in target with its horrid lighting and I seemed fine so I take that as a win. 2 weeks ago I couldn’t have done that at all. Let me know how you go on the dothep, I have a feeling it might help you ❤️
Taking magnesium and helping. With cardiac issues. Lights and noise. My ears are killing me. Just diagnosed yesterday. Headaches starting but bed ridden. Visual disturbance. Can’t focus. Can’t deal with the ears. Stores with lights are the worst.
just watched your video...our symptoms seem very similar, including even stuff i forgot to put in my video that you have mentioned .Everything you describe sounds so much like how i felt even the suicidal stuff. thanks for posting. Just curious did you go for any balance testing where they hook up the electrodes to your face and neck? etc etc...they thought i had migraines as well until i went for the balance testing although you can have both as you said. Hope you are feeling better soon xo just curious did you or do you have any motion sickness? just hang in there, im about 80 percent better, still have bad days but getting there.
meghan gaunt hey Megan I feel like Vn and Vm have so many similar symptoms doctors find it so hard to tell the difference ! I had dizzy spells as a kid although very minor but because of this Vm was a more likely diagnosis however I was very ill with a virus so the doctor said I had labs that triggerd my migraines so I got slammed with both :( not fun! I’m due to get Balance testing next month but if I did have damage I may have compensated by now so it will be interesting to see what they find. However you had total loss right? Usually you have nystagmus of the eyes and can’t walk with your eyes closed ?? I didn’t have either of these . So I may of had partial loss but again hard to tell! Did they just give you Vrt or were you given any medication? It’s awful how many suffer with this and great for people to post about it! And give others hope xx
meghan gaunt and yes I have terrible motion sickness ! Also couldn’t drive as the road looked so Off did you ever get that where everything looked like ur in a fun house it was so much worse outside !
Amy Shockett yes it was terrible, a fun house is a great description! i would go home and cry after walking to the shop mostly because in the beginning i was almost hopeful each time that maybe today it wont be so bad but it never seemed to be improving, i also felt very much detached from my head/body (but like you said its hard to explain that) it was just the sheer disappointment of it as well bc inside you feel like maybe your slightly better today and then you go outside and quickly realize that your not! I didn't have total loss, they weren't able to tell me what percentage i had lost on both sides but they did say that it was possible to have VM as well as VN as VM can affect the results of your balance testing. No nystagmus in my eyes and no spinning sensation because it was in both sides therefore it was counter balanced if that makes sense?? Im glad your doing the VRT, its the only thing really that has helped me, in total its been 6 months, it took 3 months to get a diagnosis, i had never been so depressed in my entire life...sounds like your on the right path, these disorders are soo tricky and mimic each other. Im so glad you posted so we can hopefully help more people xo
meghan gaunt honestly it’s been the most awful few months unless you’ve been through it u will never understand it’s like walking around in a dream 247 in ur own vertigo bubble ! That’s interesting about the rest so could you stand up in to beggining or did you fall? And yes that’s how I feel when I walk outside I wake up waiting to feel 100% hasn’t happened yet outside it awful it makes everything so much worse for me did it for you ? I’m 4.5 months in and although slightly improved I’m no where near 100% how long till you got to 80%? Yes def hope more people can raise awareness it’s way more common than people think! Xxx
Also forgot to mention I have the flu vaccination and got all this 4 days later. I also have a low blood count so my immune system is not the best. I was unaware of my blood count being low prior to this. My Dr told me it’s been like that for around 5 years. So interesting. I’m 8 months in now. On prop and Zoloft. Going to neuro in feb to ask for Ami.
I sorry for what you going through ..I know how you feel ... don't lose hope you will get bether.. give your body a rest.. it take time for for body to compensate... I'm not a doctor . . But I think you have labyrinthitis ... because that's exactly how I got sick 2 years ago I'm bether now ... not 100% yet but a lot bether... have you done the balanca test ?
monica pei thanks so much Monica ! They’ve diagnosed vestibular migraine and labs . But I’ve had migraine dizzyness in the past ! Can I ask what you did to improve and how long you were bad for ? Thanks so much for the message x
Hi Amy Shockett I was like you ... I went to see a therapist to help me with my anxity which was very bad... I use to go out for walk when I could. In the beginner I didn't went to store because it made me very uncomfortable... in my house I wasn't in bed I was always busy with my kids with cleaning, cooking etc... I thinks it that really help even do ... I was always disoriented... ex: went I was cooking I had to take small brakes just to be able to concentrate because it was too much for my brain and that helped me.... I never took medication since I think it could it delayed my recovery... just advil for headache, meditation help too the anxity. It been 2 year now ... and only now that I can say that I feel bether...I still dealing with headaches almost everyday but the other some of the other symptoms are gone.. months go by you will notice improvements.... I hope it doesn't take that long... everybody is different... went I see you videio.. I feel that's exactly like me your symptoms.. take care 😗
Thanks so much Monica , can I ask did you ever get the pressure in your head and detached kind of feeling like ur in a dream? I’m so happy to hear ur better however it sounds like you could have vestibular migraines too have a google of the symptoms it’s always misdiagnosed as labs as the symptoms are similar but the fact that you are getting headaches means it’s more likely VM :) either way I’m glad ur better xxxx
Amy Shockett Maybe it could be VM .. but I started having this symptoms after the flu virus... I was in bed with the flu very sick like you. After that think just got worts... I did the balanca test and my neurologist told me that I have ine ear damage that I would at least take a 1 year to recover but for me it took more time. Yes it did have the presura in my head... and also feeling that I wasn't real .. like I was in a dream.. my mind was so foggy..like my head had cotton insine it so hard to describe..sometimes I use to tell my husband that it like a feeling that my mind is like I was dumb.. do you understand what I mean.. that felling make me have panic attacks until I lear to deal with it.
monica pei I also had this after a virus however I’ve heard labs can trigger VM who knows tbh they’re so similar anyway! And yes that’s exactly what it felt it’s the hardest feeling to describe to people , did that eventually go away for you ? It’s honestly my worst symptoms ? :( I’m currently being put on medication to help as haven’t left my house much since this all started xx
I no the feeling i have had vestibular migraines and chronic daily headaches constantly for 3 years anxiety through the roof because of the dizziness nightmare so hard for people to understand its not just a migraine lol.
Amy Shockett yer i take propranolol it takes the edge off but still get really bad days i cant take many other meds as have bad reactions to them i dont have caffeine etc ive tried lots of things but no cure. I had migraines since i was around 3 years old but on and off my whole life when i hit my 30s thats when things got a lot worse and just diagnosed with fibromylgia aswell lol
Hi Amy i have the depersonalization and deralization terrible with this had it constant 3 months now, will the depersonalization and deralization go away or not im absolutely fed up, feel so disconnected from me own body and reality
For anyone whos on the last straw in terms of combating vestibular migrane. I would reccomend using ketamine in a sensible fashion. It got through the brick wall of the condition for me at least
Early this year I got a bad flu and after a month my vestibular migraine symptoms got bad😒 Yes I get that detached feeling like I’m not sure who I am🤔They can be very weird and changing symptoms. ie I lost my ability to taste most foods this last week🧁Really sucks! People lack empathy because they can’t understand what they haven’t experienced😆This often causes us to isolate and get on social media🤳
Did your depersonalization and deralization go away? Im super fed up three months constant now dunno how much longer i can go on, how long did u have it for is it totally gone
Lauren Baldwin Yes has improved now. But the symptoms come in unpredictable waves. I lost my taste for two months. When my immune system is low I seem to struggle. Mentally it can be a vicious cycle. Vestibular problems cause the brain the use so much extra energy to do basic tasks like balancing. This triggers anxiety which in turn causes even worse cognitive physiological and physical problems. All we can do is get as fit and strong as possible and hope we get some relief. Many people struggle with physical problems. My sister struggles with rheumatoid arthritis.
@@stephenireland3816 i dunno much longer of this i cn take i hav the disconnected thing from my body n everyone n terrible brain fog, i dunno what t do will it all defo go away or is there mo gaurentee
I have a history of very painful migraine, it also runs in my family. However the other day I was feeling faint with fever and a headache that lasted 48 hours and the next day I awoke to the horror of the room spinning and I literally couldn't even lift my head much less sit up or walk! I was terrified, so I lay still and as long as I was still it felt ok. I had to crawl like a turtle on hands and knees just to go to the loo. The next morning I awoke only slightly dizzy but the headache returned and fever gone. I think I had viral meningitis which attacked the vestibular nerve. So I am loading up on supplements and herbal remedies. I am so scared to drive, but at least today I can walk to my kitchen to get a drink.
I'm in the UK and I have exactly the same symptoms. Where are you in the UK? would you like to meet up to discuss? I've been suffering for 3 years now x
Thank you for sharing your struggles with this terrible condition. I’m so sorry you are going through this but please know that by sharing your story you are helping others like me feel less alone. I admire your courage. My own rollercoaster journey with dizziness and vertigo started this past April. I was initially told by my ENT that I was probably dealing with Ménière’s disease but have since been told that it’s vestibular migraines. I’m experiencing photophobia right now and chronic dizziness 24/7 along with severe attacks of vertigo that can last anywhere from 10 minutes to 6 hours! Thankfully the vertigo attacks are less frequent than before but their randomness and unpredictable nature makes them really frightening! Compared to other illnesses I realize that VM is not a terminal condition but it is certainly life altering. I’m really struggling to stay positive right now but I haven’t given up hope that things can get better. 😔
Hey Amy! Awesome to actually listen to you describe all of “our” symptoms vs just reading them on our mutual platforms. I was diagnosed with VN mid 2020 and the Dr. (Otolaryngologist) added PPPD later that year. You are so spot on how this is always with us, it just varies in intensity on a daily or weekly basis. So many different symptoms, it’s just crazy! Based on what you have said Dr’s have told you about VM, that may be part of my situation as well. I, on fairly rare occasion will get Aura with wavy lines in my peripheral vision. I can usually tell when that is coming on because my vision changes where letters start missing when I’m trying to read. Usually lasts 30 to 40 minutes. My worst symptom has to be feeling “off” or dizzy just about 24/7. As you said, it varies in its intensity though. My other symptoms include: neck pain, ear fullness, balance issues (if I ever get pulled over by cops and they want me to do field sobriety test I will tell them forget it, let me blow instead. I would so fail field sobriety tesr🤣). ---- thank you again for sharing your story! Have you ever checked out PPPD and Life on FB? Take care! Wish you the best!
Everything you said I’m Experiencing this all day .. going on 2 months in..seen 16 doctors and no help.. I’m learning more from TH-cam then the doctors 🤦🏾♀️ thanks for sharing
You're not alone with your feelings and symptoms . Struggling with this chronically for about 5 years now 😢it created anxiety and depression as it's never ending.xx
I’m so grateful for your videos as a fellow sufferer Amy!!
Every single thing you said I have. I’m already diagnosed with VM but just knowing you have the same symptoms as someone else can help ease the anxiety
This video is still helping someone! Me! So thank you haha, it’s been a wild time lately. It’s good knowing I’m not alone or crazy. Thanks again. Best of luck to all of us.
Yes!!! I've been dealing with this for so many years. I'm finally being referred to a neurologist. I get what feels like ear migraines!!! Dizzy,floaty feeling. I feel like I'm in a daze and at times, the daze is so bad that my eyes cross. I've not been diagnosed yet. It's so stressful. I feel like I'm on an elevator sometimes and also like I'm going to fall. Thanks for the video! 💖
This is how I feel too. I've been experiencing this on and off for around 6 years. I have blocked left ear feeling, pressure in left side of the head, tinnitus, crossed eyes occasionally, floaty feeling, feeling tipsy/like I have a hangover, knocked sideways, bright lights especially when driving at nights are horrible and makes my eyes and head feel like they are somewhere else!
@@misslynnemcc I feel the exact same stuff. Driving at night is horrible!!! I will keep you posted on what they find. I'm tired of this mess!
Lynne McClelland does it makes you feel weak? Head numb
Amy i ve been speaking to you before on facebook but now came across your video while checking for vestibular migraine on youtube and its incredible how each one of our symptoms are exactly the same. And mine also started after a virus and a vaccine. hang in there sweetie :( i hope somehow we can go back to normal and live our life .
Sofia Domingues ahhh I hope this could reassure you that it isn’t just you . This may be an odd one but how old are u? My doctor said age and hormones play a part and I turn 30 this year. I pray our bodies calm down and we have to keep trying things untill they do 🙏🏼💖
im 36. That would make sense ,hormone related. I just cant get my head around this misterious illness. It's so depressing to want to do so much in life, and just like you said not even be able to go to the movies or anywhere, even at home i feel awful all the time and completely isolated. Life has totally stopped for me. And the fear is always there of what if i do not get better :(
I hope you make more videos, im pretty sure it can help a lot of people like us. It sure did help me. But I hope the next one will be a video of how you are feeling so much better and found the perfect meds to finally beat this ! :* 🙏🏼
I really feel your pain lovely and often feel the same. I have made some baby steps in recovery from when all this started last October so I know we can all get there it’s just a hard road. I’m always here if u need to vent lovely xxx❤️
Maleine
I can relate to you all of your symptoms. I have been having migraine for many years too. Most of the time I feel like it is taking over my life completely. I want to thank you for sharing and making an effort to make this video. You are not a lone.
Was diagnosed with VM after 2 years of hell.. this shit nearly cost my life. Luckily I had my wife& Kids by myside they keep me going threw this Bs .. only now I have gotten on medication . I hope everyone that has this condition get better soon. stay strong people .
How you doing now bud? If you're better what medications did you take? Also did you ever feel like you were almost going to faint if you got up from a chair or kneeling down?
I have told my wife numerous times that I wanted to cut my head off! I am happy I am not alone with that thought!!! Thank you for sharing your journey.
Dellena Rice thank you sometimes knowing we’re not alone is such a comfort I hope you have better days
Thank you for sharing, so helpful 🙏🏼❤️ Dealing with vm and pppd 3 years now. It’s really sucks. But I’m sure soon I’ll be fully healed. ❤️
Oh Amy . I have everything you describe here . The vision is exactly like that 24/7 and I’ve never heard anybody else say they have it . I’m in absolute hell dizzy 24/7 too ears the sane as yours .. so horrendous
Thank you for sharing. I have the same EXACT symptoms. Been dealing with this for 6 years. Started after the birth of my son at 21 yrs old. till recently I was diagnosed.
I have this too for going on 2 years now. I went to an ent had an allergy test was told I'm allergic to nothing. I did pass a hearing test and passed the epleys maneuver test. I was sent to physical therapy for vestibular issues I went to one appointment and was shown stupid eye exercises that do nothing. I have been googling the heck out of my symptoms and finally found that it most likely is vestibular migraines. Thanks for the video I to have all these symptoms. Dizziness head eye ear forehead pressure. Sometimes feel foggy or wanna faint. I feel like everything else is totally still but I'm the one moving or rocking. It does it even when I am laying down or sitting or standing or walking. When I first got it it seemed a lot worse than what it is now. I had sore jello legs from trying to always overcompensate my balance trying to literally hold myself up and still... Driving makes it better for me being in constant motion seems to make it a lot better. I have always had bad health anxiety since a kid and still do so it exacerbates it. I can start to feel dizzy and I immediately start to have anxiety and panic attacks because of the dizziness. Trying to see if I should go back to the doctors and tell them I think I have diagnosed myself since the ent basically threw me under the bus.
Farrah Capps hi farrah I am so sorry ur suffering for so long! Did the ent test your Inner ears ?? As I had to have this to rule it out also I highly reccomend seeing a neuro otoligist not sure where ur from but I know a few good ones here in the uk xxx
Hi fc I ve same problem plz tell me the diet
It's horrible fc
F. C. : do you have these symptoms 24/7? Or it comes and goes?
Wow this sounds so similar to what I have. Been feeling dizzy and vibrating vision 24/7 the past 4 months. I think anxiety set it off, so I'm gonna try SSRI's
How are you feeling now?
I never got better 5 years in! just learnt to live with it on my own!
I 100% agree for me my worst symptoms right now are the dreamy feeling and things just not looking how they should if that makes sense ? Are you still on medication ? Can’t wait to watch your yoga videos such a positive thing to do especially with mav :) x
Amy Shockett I had the dreamy feeling for months before finally being diagnosed correctly. I take 75mg of Effexor and it’s helped. I’ve recently added magnesium citrate to my daily routine and I got even better until I ate a lot of dairy for a few days. Now I’m having a doozy of a migraine (off balance and mild vertigo). This condition is ridiculous.
I have the same problem with things just seem all wrong in my head instead of my head feeling the right way and I have the true occipital neuralgia it hurts so bad and when it's not hurting so bad my head is still killing me with a pressure pain my vision is so blurry it is scary this all scares me so bad. I go for a nerve stimulator next week am really praying it works!!!!
@@BridgetWeedon heyy did your depersonalization go fully away where u returned back too who you were and how you were before you got depersonalization, and did u have brain fog?
This is me exactly. I jope you are doing better. I'm not officially diagnosed yet, but working on it.
Hi Amy my symptoms are the same my head feels like a washing machine it's awful I've tried all the meds but like you not gave them a chance to work it's sending me insane thank you for your video they are very helpful
After being severely ill as you were.. I would go to a naturopath or holistic dr and get tested for mycoplasma and Lyme disease. Lyme disease doesn’t just come from ticks and a secondary infection like mycoplasma is an air borne illness as well. It can break the blood/ brain barrier and cause severe neurological illnesses. I am dealing with all of this now. Good luck my friend.
Will holistic drs test for those things?? I live in the united states, and drs seem to take a 31 year old with no medical history or issues like a joke. But ive been experiencing this since august! The more research i see, ive seen a lot about lyme disease!
Thanks for posting your video! I feel I've had this for a few years but not really bad until November. It hit me like a ton of bricks while shopping in a hardware store. Thank God my wife was with me, I could hardly walk, breath or function. I've seen my Doctor a few times and I think he thinks I'm crazy! I did manage to get an MRI appointment that is in two weeks. It wasn't until two days ago searching the internet for CBD oil relief info that I came across a Vestibular Migraine video! As they described the symptoms I was shocked, I'm not crazy... its real! Again, thank you for taking the time to post a video.
R G , do u feel any better?
100% what I'm feeling. I feel so disconnected from my body and feel so spaced out and my anxiety is through the roof.. at first when I got it things were moving and colors were really bright for me and i was so sensitive to colors. My peripheral vision has gotten weak and it feels like i'm crazy and feels like i'm always floating.
Isabella Lopez , do you feel any better?
Thank you for posting this it helps a lot, they told me in 2013 I vestibular neuritis, now they said I have PPPD,, I can’t drive at night because the light bothers me and also in the daytime I can’t go without sunglasses,, I mostly have the blinds call down in the daytime I live like Dracula..lol,, I know the weather sometimes makes it worse and sometimes I eat salt or sugar that makes it worse is anybody out there have anything to say about your eating habits it makes this worse then before?? Sometimes I can’t even think of what I’m saying and I can’t even look at my cell phone with the brightness because it bothers me so bad,, also the TV on loud noise,, it has been a real challenge, I went to therapy rehab it helped some for a while but it just comes back later on,, I have gotten better but they told me that it was the zoster virus that hit my vestibular,, shingles,, is anyone else out there had that happen to them?
Thanks Amy for the video. I have the derealisation and my eyes are not working well. It’s like looking through someone else’s lenses. I feel it affects my ability to process and read information on a huge level therefore I’m unable to work.
I’m going through the same :(
This is my experience, thank you for sharing
Thanks so much for sharing. This made me feel so much better,just knowing someone else had the same symptoms.
I started to get dizzy spells about 3 years ago.Many times it was brought on by my PC monitor.At my worst I was 12 hours on the floor after an hour of vomiting.I remember crawling on the floor ,eyes shut, to reach the bathroom.Once or twice I was out when I suffered attacks.Absolute nightmare.Eventually it all faded away but it took many months.I remember wondering if I could face it again...basically contemplating suicide.Anyway it is back again but not as acute as previously.Just had 10 days of fluctuating dizziness.I spend many hours lying down wondering if I will be able to get to the shop.I do have tinnitus and partial deafness in one ear but my attacks always seem to start with my vision.
I've been going through the same thing, 8 months now. ENT, neurologist, physical therapy and I'm still having daily episodes. Driving and things moving in my peripheral vision seem to set it off. Sometimes I get the rocking boat sensation, other times I feel like I'm experiencing Gs. I've had CT scans, MRIs of my entire spinal column and brain, spinal tap to test for meningitis, and tested for Lyme disease. Vestibular migraine or atypical vertigo were the only two diagnosis they weren't able to rule out. It was also brought to my attention that pinched nerves in the cervical spine due to stress, or anxiety could be a trigger. I went to a chiropractor 5 times over a 2 week period. After every session, I was worse. I mean, so dizzy I could barely stand up. But about a week after my last session, I went from being dizzy all day to having a couple episodes a day. It's far from gone, but now it's tolerable. Another thing I thought of while watching your video is Meneires Disease. The full ears is one of the biggest symptoms. I really hope you find answers. I hope we all do. This is such a frustrating ordeal.
April Wolfe hey April I’m so sorry to hear ur suffering too. I don’t get the full ears anymore only one at the beginning . I’ve had every test under the sun and been diagnosed with Vm had this since 13 so they’re pretty sure . I saw a cranial osteo and Chiro and neither helped tbh :/ so I’m hoping the meds I’m on kick in soon
OMG My ENT thinks that is what I may have. I have had all of those symptoms and then some.
You will get through this
Ugh I get awful vertigo in Tesco. I'm pretty sure it's the lighting. I had to leave my shopping basket in the middle of the floor and leave once! Didn't shop there for a while but now I'm ok there.
They said To me and it helped...when the dizziness starts Focus on a fixed point on the wall until you brain works out the horizon.
Your very spot on with the de realization, extreme depression, the vision issues and the full head feeling... have you had any visual snow? Have you been able to workout/go to work?
nick champeau yes get visual snow daily ! After a year I can workout and I do work and did the whole way through but I work for myself other wise there’s no way it would have happened . It seems recovery is very very slow with this illness
~*You are an Inspiration *~
I have exactly the same thing and you are not crazy. EVERY SINGLE SYMPTOM. I have actually collapsed and been taken to the hospital in an ambulance. I know how you feel you are not alone. This is an isolating condition. Anti depressants have helped me.
this sounds very similar to my experience. I was recently diagnosed and the dreamy, derealization feeling is the worst. I also just have times where I feel like i'm not blind but my brain cannot process what I am looking at in front of me. Like if I open my refrigerator to look for something, I cannot scan the items well to find what I need. Medications have been so trial and error - I was a zombie on amitriptilyne. I am trying topomax next I think, but tried gabapentin as well (probably misspelled that). Each day is so hard. I definitely have days where I am probably having an actual migraine, and then days where the symptoms are just leftover from my vestibular system being out of wack. I never truly feel not dizzy. Thank you for your story!
Taylor Zaborski ah Taylor I get that all the time that’s a good way to describe it ! It’s crazy how many suffer with this awful illness ! I think it’s hard finding a med that works but there is one for all of us . I’m still trialling meds couldn’t hack ami now on nortrypryline . I hope topamax works ! Did gaba not do anything I’ve heard good things about it ? X
gaba made me feel more vertigo, and I stopped after one dose. Maybe if I tried it longer, it would work, but I am getting frustrated with side effects so my patience is not always there. best of luck to you on your medications!
Taylor Zaborski ahh I’m sorry I promise you they all make you worse before better so try to push through 😘
Amy - we're very similar. Your symptoms are bang on mine, so frustrating. Do you mind telling me which ENT . Neurologist / VRT you saw?
Eddie Ross I’m so sorry you have this too Eddie . I have seen ent peter savundra at the Portland hospital and also neuro otologist dr surentherin in Harley street . Have you seen anyone yet ? Dr s is very good . Not sure where you’d based?
Amy Shockett I managed to convince my GP to prescribe Amitriptyline and she was very good at researching MAV with me. I plan on seeing Dr S I’ve heard big things! I’m in Manc so a bit of a mission to get there but 100% worth it!
I mean tbh if your gp is that good you may aswell save your money ! All he will do is prescribe Ami first anyway lol. Ur gp sounds very good! Has the Ami helped at all? Nort was good for me but my heart rate got stupidly high on it !🙄
Amy Shockett Yeah she was great. Saw NHS GP 5 times, A&E etc, no help. So went private GP and here we are! It’s only day 3 for me so we’ll see. Did you feel really fatigued on the meds or just heart rate? That must has freaked you out a bit!
@@eddross I did Amitriptyline about 7 years for migraines and it slightly helped but the side effects were too much. Dry mouth that was unbearable and difficulty urinating. Let me know if you had any problems with it and significant of relief you got. I say it reduced my migraines by about 1 day a week. I have 3 to 4 a week.
great description of vestibular migraine. I have the same condition and it sucks. But there is no reason why it won't get better. Have you had vestibular testing just to rule out inner ear conditions. There is also something called pppd that is similar to vestibular migraine and can coexist with each other. I would recommend having a proper vng test to rule out an inner ear condition. Trust the doctors and you will get better!
ed miles thanks Ed . It’s good to know I’m not going crazy! My symptoms do feel so not normal to me anyway! In the past when I had this I had all that testing came back clear I am due for Balance testing end of next month I’m hoping it comes back clear again . Do you have ur Vm under control? The dream feeling and visual stimuli stuff is my biggest issue atm x
I hope the tests come back normal as well. my vm is not under control yet i just got my balance testing done for the second time and it came back normal so now i am going to start medication soon. The visual symptoms you are describing are called oscillopsia. They can be a sign of bilateral vestibular loss. The vestibular testing will tell you the function of your inner ear. If you can you want to get a VNG test with water calorics instead of air calorics. Also you might want to look into rotational chair testing. It is the gold standard for bilateral issues. how has your vision been lately?
ed miles thanks Ed I am due to get all those tests however I had had most of the visual symptoms before and both my ears were fine then so I’m hoping for the same result 😬
Yes.. thank you for making this and tell me about this. I have had all those symptoms and drs are stumped. I have the constant dizziness and lightheadedness 24/7. Feels like my brain is vibrating most of the time. I have the pressure and the vision trouble and im depressed and very anxious
I’m so sorry your suffering Jenifer have you seen a neuro ? I get all those symptoms it can be such a scary thing to go through
You are my twin for symptoms I can’t believe how similar your symptoms are to mine
I know you probably know about this: Heal Your Headache by David Buchholz. Sometimes I just want to take a bottle of Ativan or something to stop this.
It’s a horrible condition. I was diagnosed about 4 years ago. Constant lightheadedness, head pressure, sometimes it felt like the ground would drop beneath me. I’m on a daily preventative which has helped tremendously and I’ve been really good. I’ve noticed that dairy triggers a bad migraine for me. I woke up with vertigo yesterday and it’s lingering into today. This really sucks.
Bridget Weedon hey Bridget thanks so much for the message so awesome ur better what’ preventative do you take ? I think dairy is a trigger for loads of people mine are hard to figure out as my Symptoms are still 247 x
You sound like me ! I also now go to a private gp nhs were useless!!! Just shows you! Yeah I’m a trainer so I’m super aware of my heart . I’m so high energy it takes a lot to make me tired but anything I had went after a few weeks you def have to give it a month :) do you also get the foggy head feeling ?
Hi Amy 👋🏻I was diagnosed beginning of 2016 with Vestibular migraine. I had all the symptoms you describe. Countless dr, nuro, mri etc. Eventually my Nuro put me on dosulepin (we call it dothep in Australia). After a month or so my symptoms started to go. I still suffered from the occasional dizzy spells or quick vertigo feeling but sooooo much better. Eventually I was able to drink alcohol again. I never could because I always felt horrid and “drunk” when first afflicted. I still get horrid pain migraine but I’m happy to deal with those alone and not the dizziness. 3 years later my dr recommend me try to come off the Dothep. I tried and everything seemed fine till recently.. all my symptoms came back. Living hell. It seems the dothep was still working well. I’m back on it now and 2 weeks in at my full dose I’m feeling maybe 30% better so I’m hoping I get back to 90% in the coming weeks. This condition really takes a toll on your sanity and anxiety/depression. You have to stay strong and know you’re not alone and through sharing information we all have a better chance of informing dr’s to diagnose people earlier. I must have spent thousands getting diagnosed. Anyway after living with this condition for 3 years I can tell you it can improve and don’t give up. If you want to talk more please don’t hesitate to connect.
A_maria S thanks so much for your message really means a lot just to hear others go through the same . It’s truly been a horrible few month I started nort but only at 40 mg it’s helped some but it’s only made maybe 30% difference in 3 months so going back to my neuro to see what to try next . I actually tried dosulepin for a week and saw loads more benefit than nort so may ask to swap back can I ask what dose got you to feeling more yourself ? I definatley have felt lost and depressed since this started its mentally very hard to deal with especially when the symptoms can make u feel like your going crazy I am happy to hear it worked for you but so sorry you couldn’t come off :( did your symptoms come back as bad as before ? It’s scary to think of not coming off meds . And yes I agree that’s why I made this video because I figured it can’t just be me suffering with this ! Xxx
Amy Shockett honestly I’d rather be on it and live a normal life.. maybe one day soon I’ll try again, perhaps when I want a baby but till then honestly I don’t see any benefit trying 1000 more drugs when one does the job. The only side effect is that I’m more aware of my heart, but I’m only 29 and try to get regular ecg to check my heart health. I started 3 years ago on dothep at 25 up to 50. Now I’m on 112 (1.5 of 75) a night and it seems to be my best dose so far. It’s taken about 3 weeks for me to see the effects again but even since I messaged you last I’ve improved to at least 60%. I’m not a dr (clearly) and I don’t like pushing drug options on anyone but honestly dothep saved my life. If your dr says you can go back on, and your side effects aren’t too bad I’d recommend trying it for at least a month if you can. Hopefully you get some relief soon. Again please don’t hesitate to ask anything, us dizzy folk need to stick together!
A_maria S thanks so much Maria :) I just turned 30 so I’m a similar age and like you I think the same about having kids ! Can I ask did you ever get the spaced out dream feeling and also visual shimmering heat kinda like when you look in to the distance it’s like looking through a gas fire ? These are my two symptoms that are prob the worst atm. You have def made me want to swap to dothep again and as I am on a tca I can make a swap so def think I will do this before giving up. I felt a dif in 5 days last time but I find it odd I’ve felt not much on nort considering it’s the same type of drug :/ I agree with you about coming off and so happy the dosulepin is working again. Could I ask did it make you totally back to normal last time ? This is def my biggest fear again thanks so much for ur kind message it means a lot and it’s so nice to talk to others who get it :)! Xxxx
Amy Shockett I get visual interference. It’s like a tv static over my vision, usually the brain will take some months to accomodate to this and will eventually see past it. I still get that the most I think...but when I was on the dothep for 3 years - yes the dizziness practically disappeared. Today I was able to drive to the shops and walk around in target with its horrid lighting and I seemed fine so I take that as a win. 2 weeks ago I couldn’t have done that at all. Let me know how you go on the dothep, I have a feeling it might help you ❤️
Amy Shockett also yes very spaced out feeling and disassociated. That’s calming down now too.
Have you tried magnesium at all? I take 500mg daily and it helps. I still have shaky vision though which sucks.
Riley R yes currently taking 400mg
400mg of what? oxide?
Cool Hand Luke Glycinate is the best
Ill try it :) thank you
Taking magnesium and helping. With cardiac issues. Lights and noise. My ears are killing me. Just diagnosed yesterday. Headaches starting but bed ridden. Visual disturbance. Can’t focus. Can’t deal with the ears. Stores with lights are the worst.
just watched your video...our symptoms seem very similar, including even stuff i forgot to put in my video that you have mentioned .Everything you describe sounds so much like how i felt even the suicidal stuff. thanks for posting. Just curious did you go for any balance testing where they hook up the electrodes to your face and neck? etc etc...they thought i had migraines as well until i went for the balance testing although you can have both as you said. Hope you are feeling better soon xo just curious did you or do you have any motion sickness? just hang in there, im about 80 percent better, still have bad days but getting there.
meghan gaunt hey Megan I feel like Vn and Vm have so many similar symptoms doctors find it so hard to tell the difference ! I had dizzy spells as a kid although very minor but because of this Vm was a more likely diagnosis however I was very ill with a virus so the doctor said I had labs that triggerd my migraines so I got slammed with both :( not fun! I’m due to get Balance testing next month but if I did have damage I may have compensated by now so it will be interesting to see what they find. However you had total loss right? Usually you have nystagmus of the eyes and can’t walk with your eyes closed ?? I didn’t have either of these . So I may of had partial loss but again hard to tell! Did they just give you Vrt or were you given any medication? It’s awful how many suffer with this and great for people to post about it! And give others hope xx
meghan gaunt and yes I have terrible motion sickness ! Also couldn’t drive as the road looked so Off did you ever get that where everything looked like ur in a fun house it was so much worse outside !
Amy Shockett yes it was terrible, a fun house is a great description! i would go home and cry after walking to the shop mostly because in the beginning i was almost hopeful each time that maybe today it wont be so bad but it never seemed to be improving, i also felt very much detached from my head/body (but like you said its hard to explain that) it was just the sheer disappointment of it as well bc inside you feel like maybe your slightly better today and then you go outside and quickly realize that your not!
I didn't have total loss, they weren't able to tell me what percentage i had lost on both sides but they did say that it was possible to have VM as well as VN as VM can affect the results of your balance testing. No nystagmus in my eyes and no spinning sensation because it was in both sides therefore it was counter balanced if that makes sense?? Im glad your doing the VRT, its the only thing really that has helped me, in total its been 6 months, it took 3 months to get a diagnosis, i had never been so depressed in my entire life...sounds like your on the right path, these disorders are soo tricky and mimic each other. Im so glad you posted so we can hopefully help more people xo
meghan gaunt honestly it’s been the most awful few months unless you’ve been through it u will never understand it’s like walking around in a dream 247 in ur own vertigo bubble ! That’s interesting about the rest so could you stand up in to beggining or did you fall? And yes that’s how I feel when I walk outside I wake up waiting to feel 100% hasn’t happened yet outside it awful it makes everything so much worse for me did it for you ? I’m 4.5 months in and although slightly improved I’m no where near 100% how long till you got to 80%? Yes def hope more people can raise awareness it’s way more common than people think! Xxx
Amy Shockett yes
Hi Amy I ve to vestibular migrane since last 2yr it's horrible plz tell me the exercise
Also forgot to mention I have the flu vaccination and got all this 4 days later. I also have a low blood count so my immune system is not the best. I was unaware of my blood count being low prior to this. My Dr told me it’s been like that for around 5 years. So interesting. I’m 8 months in now. On prop and Zoloft. Going to neuro in feb to ask for Ami.
I sorry for what you going through ..I know how you feel ... don't lose hope you will get bether.. give your body a rest.. it take time for for body to compensate... I'm not a doctor .
. But I think you have labyrinthitis ... because that's exactly how I got sick 2 years ago I'm bether now ... not 100% yet but a lot bether... have you done the balanca test ?
monica pei thanks so much Monica ! They’ve diagnosed vestibular migraine and labs . But I’ve had migraine dizzyness in the past ! Can I ask what you did to improve and how long you were bad for ? Thanks so much for the message x
Hi Amy Shockett
I was like you ... I went to see a therapist to help me with my anxity which was very bad... I use to go out for walk when I could. In the beginner I didn't went to store because it made me very uncomfortable... in my house I wasn't in bed I was always busy with my kids with cleaning, cooking etc... I thinks it that really help even do ... I was always disoriented... ex: went I was cooking I had to take small brakes just to be able to concentrate because it was too much for my brain and that helped me.... I never took medication since I think it could it delayed my recovery... just advil for headache, meditation help too the anxity. It been 2 year now ... and only now that I can say that I feel bether...I still dealing with headaches almost everyday but the other some of the other symptoms are gone.. months go by you will notice improvements.... I hope it doesn't take that long... everybody is different... went I see you videio.. I feel that's exactly like me your symptoms.. take care 😗
Thanks so much Monica , can I ask did you ever get the pressure in your head and detached kind of feeling like ur in a dream? I’m so happy to hear ur better however it sounds like you could have vestibular migraines too have a google of the symptoms it’s always misdiagnosed as labs as the symptoms are similar but the fact that you are getting headaches means it’s more likely VM :) either way I’m glad ur better xxxx
Amy Shockett
Maybe it could be VM .. but I started having this symptoms after the flu virus... I was in bed with the flu very sick like you. After that think just got worts... I did the balanca test and my neurologist told me that I have ine ear damage that I would at least take a 1 year to recover but for me it took more time. Yes it did have the presura in my head... and also feeling that I wasn't real .. like I was in a dream.. my mind was so foggy..like my head had cotton insine it so hard to describe..sometimes I use to tell my husband that it like a feeling that my mind is like I was dumb.. do you understand what I mean.. that felling make me have panic attacks until I lear to deal with it.
monica pei I also had this after a virus however I’ve heard labs can trigger VM who knows tbh they’re so similar anyway! And yes that’s exactly what it felt it’s the hardest feeling to describe to people , did that eventually go away for you ? It’s honestly my worst symptoms ? :( I’m currently being put on medication to help as haven’t left my house much since this all started xx
Just want to ask, does this migraine make one side head numb and gives face tingling, make body weak? One side specially?
I no the feeling i have had vestibular migraines and chronic daily headaches constantly for 3 years anxiety through the roof because of the dizziness nightmare so hard for people to understand its not just a migraine lol.
Nick2427 so sorry u digger too nick I hope you find some relief soon. Have you tried any meds / diet ? And yes people can be so ignorant !
Amy Shockett yer i take propranolol it takes the edge off but still get really bad days i cant take many other meds as have bad reactions to them i dont have caffeine etc ive tried lots of things but no cure. I had migraines since i was around 3 years old but on and off my whole life when i hit my 30s thats when things got a lot worse and just diagnosed with fibromylgia aswell lol
Hi Amy i have the depersonalization and deralization terrible with this had it constant 3 months now, will the depersonalization and deralization go away or not im absolutely fed up, feel so disconnected from me own body and reality
For anyone whos on the last straw in terms of combating vestibular migrane. I would reccomend using ketamine in a sensible fashion. It got through the brick wall of the condition for me at least
Early this year I got a bad flu and after a month my vestibular migraine symptoms got bad😒 Yes I get that detached feeling like I’m not sure who I am🤔They can be very weird and changing symptoms. ie I lost my ability to taste most foods this last week🧁Really sucks! People lack empathy because they can’t understand what they haven’t experienced😆This often causes us to isolate and get on social media🤳
Did your depersonalization and deralization go away? Im super fed up three months constant now dunno how much longer i can go on, how long did u have it for is it totally gone
Lauren Baldwin
Yes has improved now.
But the symptoms come in unpredictable waves.
I lost my taste for two months.
When my immune system is low I seem to struggle.
Mentally it can be a vicious cycle. Vestibular problems cause the brain the use so much extra energy to do basic tasks like balancing.
This triggers anxiety which in turn causes even worse cognitive physiological and physical problems.
All we can do is get as fit and strong as possible and hope we get some relief.
Many people struggle with physical problems.
My sister struggles with rheumatoid arthritis.
@@stephenireland3816 so has ur depersonalization the out of body thing gone away as well as the brain fog
@@stephenireland3816 i dunno much longer of this i cn take i hav the disconnected thing from my body n everyone n terrible brain fog, i dunno what t do will it all defo go away or is there mo gaurentee
@@stephenireland3816 could u help me out please am soo fed up because what if this detachment and brain fog doesn't go 😢😢
I have a history of very painful migraine, it also runs in my family. However the other day I was feeling faint with fever and a headache that lasted 48 hours and the next day I awoke to the horror of the room spinning and I literally couldn't even lift my head much less sit up or walk! I was terrified, so I lay still and as long as I was still it felt ok. I had to crawl like a turtle on hands and knees just to go to the loo. The next morning I awoke only slightly dizzy but the headache returned and fever gone. I think I had viral meningitis which attacked the vestibular nerve. So I am loading up on supplements and herbal remedies. I am so scared to drive, but at least today I can walk to my kitchen to get a drink.
And read the gospels and find your truth. The Holy Spirit will lead you there if you ask
I'm in the UK and I have exactly the same symptoms. Where are you in the UK? would you like to meet up to discuss? I've been suffering for 3 years now x