She just described me. I developed migraines with visual aura at 16 yrs old, then at 54 they morphed into vestibular migraine. For several years previous to that, there were warning signs -- every time I would get a migraine I would feel like I was walking slightly crooked or leaning to the left side, but it was mild and wouldn't last. It was much worse when it first came on. The first 6 months were intense but over the next 3 years it slowly became a once in a while thing. My bad episodes are triggered mostly by barometric pressure changes and heavy wind storms.
I’m glad I came across this video! I have been diagnosed with BPPV about 5 years ago but my symptoms are getting worse. I now have bouts of head pressure, blurred vision, seeing spots, nausea, and of course dizziness. I’ve been treated for BPPV with Eply Maneuver. I also had “abnormal vestibular balance” issues after having a VSG test. I still have symptoms and doctors dismiss me. I’ve had MRIs and a spinal tap. I have a history of migraines from the age of 10. They went away in my late 20s. So now, I sit here dizzy and nauseous with zero answers.
I suffer from some of the same symptoms as you do. My headaches started over 40 years ago. Back then, research was so abysmal in Migraines. It tooks years to find a good neurologist. And even more time to create the proper management, medical regime and path forward. But research has finally been funded to the degree that patients like you and I are heard and respected. Keep the faith. It's better now than in the early 80s.
@@zoyabattol754 I do, I had a radical hysterectomy & bilateral oophorectomy 18 months ago, I was diagnosed with vestibular migraines (hormone related) and I've been on a boat all this time. Its really really getting to me now.
Do you have auras and or hallucinations or feelings of huge ears etc...called Alice in wonderland syndrome? There can be help, discuss calcium blocker with your doctor...
I am so glad I viewed this video! I have the exact history of aura migraines from my late teens/early 20's that are described. I remember going to a doctor when these started for me when I was 20 years old and was diagnosed with 'Classic Migraines'. I was very relieved that it wasn't serious, and I only got a few a year. When the visual aura hits me (zigzag light show) I would take 2 ibuprofen and that would take away the headache that followed. Through the years I never needed to see a specialist for this migraine and as I got older, I was only getting 1-2 a year. Overall, I was very happy that my migraines had very little effect on my life. This video describes how the visual aura migraines change for people in menopause which is exactly what happened to me. On 11/12/21 when I was hit with a 1st time panic attack at work followed by imbalance, vertigo, dizziness, visual disturbance (very different from the zigzag aura from my classic migraine) .... While I had always been so healthy, I was now seeing all these doctors to figure out what was wrong with me. I was riddled in fear that I had some very serious underlying condition. I finally landed with a Hopkins neurologist on 2/28/22 who diagnosed with vestibular migraines. After that appointment I started the migraine diet, took ALL suggested supplements, some medications and continued my research of my own on VM and found Alicia Wolf and Dr. Beh. I have purchased their books. While I have come such a long way since 2021 and can go several days feeling well, I am still hit with VM symptoms of dizziness/imbalance that continues to remind me that I have this chronic neurological condition. After being super strict on the migraine diet I did start adding most foods back into my diet except for caffeine. My journey always continues to figure out triggers that cause my symptoms to come out.
Wow! I’m having a lot more of these vestibular migraine occurrences now that I am post menopause…….curious….. my own mother never had this BUT my dad and his mother had dizziness……..this is a fascinating condition….. Their doctors only checked for sinus, infections, incorrect medications, etc. . No talk about hormones, or dietary factors. Thank you for your work 💜
Thnx so much 4 saying medicine is key to the PT. I was Dx w/ Pos semi-Canal Hypofunction + Vestibular Migraine. I did PT for 2 mo but it made symptoms so much worse. I'd come home from PT unable to get off couch. I felt like I failed treatment. I only had zofran to stop throwing up all night. I wish even now I was offered dizziness meds!!
I suffered migraines in pubescence, now 62 and when Menopause hit and now post menopause my vestibular migraines have gone crazy… not so pain, but dizziness and nondescript changing symptoms auras, anxiety, panic, neck and hip pain, barometric pressures etc. massively cleaned up diet, but still ongoing. Wine a big no no!! 😢😓😞 I’m on beta blockers. Both my parents also suffered.
This is also my experience, I'm peri menopausal and my hormone changes have amped up my symptoms greatly, not sure if hrt is helping or hindering, I've bearly left the house for 4yrs.
Yes! I e had pain while younger. I alway said it changed to aura after having children. So it was insane with the aura which got dismissed bc I didn’t have pain! Thank you for addressing it! I thought maybe it was now my tolerance to pain. Doctors have said well if you don’t have paint then it can’t be a migraine 😢. I ve been in limbo for YEARS!!!
Good talk. However, it it important to make people aware that migraine of any kind is a threshold disease. Which means that each trigger raises you up the ladder to having an episode. This explains why you can have, say, red wine one day and have a migraine, and have it another and not have one. Trying to eliminate all the food triggers is ridiculous. It is important to track what triggers (stress, food, hormones, weather, etc) you are experiencing. We can only control certain things so when other outside things are affecting you like weather or stress, really watch the diet, the sleep, the hydration etc. Hope this helps someone.
I am UK based and have recently been diagnosed with VM and PPPD. No headache but constant dizziness and nausea. No history of traditional migraine, have had occular migraine twice in past six years but am just post menopause and had just stopped taking HRT in October with headaches up left side of head and severe symptoms in January. Our NHS service is very stretched and trying to see a doctor is hard enough let alone a specialist. My husband did some research and found me a private ENT specialist who then sent me on to a balance specialist who works with vestibular physio. So so glad to have find them - despite the cost. And also now to discover so much info here - found the Dizzy Cook first. We have as far as I know nothing like this in the UK. Thank you for making this clear that it such a variable condition and I feel lucky to have got a quick diagnosis
@@zoyabattol754 it’s now towards the end of July and I have very few dizzy days now. I have been recommended supplements to take, no meds as I don’t get headache, I do exercises each day twice a day as recommended by a vestibular physio and have excluded food and drink triggers and have been testing a few items over the past two weeks and improvements have been really good. So far so good. I find that barometric pressure is a huge trigger for me as are supermarkets.
@balancing act resources I have lots of trouble with screens of all kinds, the bigger the brighter the worse. They seem to be a trigger for VMs that last more than a week many times. I can’t work because everything requires computer work. I am wondering about purchasing a “gaming”monitor. They have options to increase the rate of refresh which helps to reduce that “undetectable” flicker. Any thoughts? When I was younger (I’m 58) I usd to get period migraines and they were made worse by fluorescent lights. Thanks
After a miscarriage I’m my 40’s and covid they started prior to that only regular migraines. Dizzy 24/7 and sometimes I get used to it but then after a few months these other ones happen that just cause a stronger dizziness out of nowhere and I feel like pressure in my head or like my sinuses and cranium are taking turns Causing pressure and making me feel anxiety rocking swaying numbness agh I absolutely hate it. I no longer enjoy so many things.
Having dealt with vestibular migraines for a decade, I only found out that this has been vestibular migraines this entire time about three months ago. It's gotten so bad to the point where I'm blacking out, losing vision in my left eye, and vomiting every day. I feel no hope. I'm also only 33 and I've survived two heart attacks this year and have asked about vestibular migraine medications and have been denied as I'm at heart risk. So I have 0 hope and purpose to live anymore and am at the end of the road as I've tried everything. I don't want to die, but it if this doesn't work, I may just have to put myself out of my misery
@@Guitariac So your symptoms are rocking? I'm currently rocking forward and back and occasionally side to side. I think it is either vm or mdds, but haven't been diagnosed yet.
@@Guitariac Hi! Thankyou for your detailed reply. That was very kind of you and its appreciated. I'm so sorry you have been dealing with this for so long. How do you cope day to day? Are your symptoms usually at a high level? Has anything helped reduced symptoms slightly? What triggered your symptoms? I have been dealing with this for 9 months now. I have had bloodwork done, a few ekgs to check my heart, and also checked for bppv and other possible ear issues. The only thing I haven't done really is an MRI. But last week I met with a vestibular physio and she did several balance tests and looked at my eyes and checked for bppv. She was 100% confident that I am dealing with pppd as well as a possible migrane component (as I get fluctuating ear pressure at times, although not many headaches but I do get occasional migranes). So I am going to start Vestibular physical therapy to see if that helps some. My symptoms are mainly just a slow rocking forward and back and occasionally to the left. The frequency and exaggeration has calmed down over the last few months but is still present the whole day and in every position. I dont feel the swaying when walking but I do feel a bit off in my head. Sometimes in the morning it is slow enough that I think it might be gone, but it usually ramps up more the more I do and as the day goes on. Stress definitely makes it worse! And my hormones!
@@Guitariac Hi again, Thanks for your detailed response! I totally agree with you about trying/learning to accept the swaying/rocking in order to get better. It is so difficult at times, but has gotten a bit easier as the intensity has calmed down some. But there are days where I break down and am so frustrated by it. I worked out alot before this all started, but now I've been trying to walk daily (1 to 2 miles) along with all the Vestibular exercises. I eat super clean now. Drink no alcohol or caffeine. Only water. I sleep pretty good, except during the week before my cycle begins I have some trouble sleeping. I know for me anxiety, stress, and a week before my menstrual cycle things get worse. I experience more symptoms during that time. (More anxiety, fatigue, ear pressure or fullness, occasionally hearing my heartbeat or a whooshing sound in left ear for a few seconds randomly along with a bit of tinnitus, and occasionally nausea or motion sick type feeling). I did notice that I need to eat frequently to feel better and certain foods made those symptoms better or worse (gluten , dairy). As a result I have not been eating gluten and very little dairy (similar to migrane diet). But once I start my cycle the only symptom I have is the swaying/rocking. Ive always had fatigue and a bit of anxiety during pms week, but not the ear symptoms (so perhaps those are VM related?). And when I do get a headache its usually during this time as well. Back in August when this first started I had a horrible headache(migrane) at the start of my cycle. Looking back I believe it was a vestibular migrane but just didn't know it. I felt dizzy and the floor felt like it was shifting, making it difficult to walk. My vestibular physio believes that's what started everything and got my brain "stuck" into pppd mode. During that month the symptoms were off and on. But because they weren't leaving it sent me into a horrible panick attack at the end of August. The swaying/rocking have been all day/everyday since that panick attack. It's funny you mention the MRI. I believe if I could get one done, it might help calm more of the anxiety I feel around all this. I have been scared of the worst. My regular doctor said he needed a really good reason to order one and he didn't think I needed one based on his neurological physical exam and just my swaying symptom (plus all my bloodwork and everything was super healthy). I do have an appointment with a neurologist in July though( been waiting for months) to see what he thinks and maybe he will order one. In the meantime I'm working with a vestibular physio. She said she didnt think I needed an MRI either based on all the tests she did with me. But still there have been days where I'm so close to going to the ER to see if they can just scan my head for me lol (but I do think this is my anxiety/fear more than perhaps really needing one at this point). My symptoms have gotten better though and its reduced to just this slow swaying/rocking. I figure if it was something super serious I would progressively be getting worse and worse, right? But still, a clean MRI would provide me with some relief and rule out many scary things that I believe keep my anxiety going in the first place. Are you able to drive or work at all? Thankyou again for your replies. It is nice talking with someone who is going through something similar. The weird head feeling while I'm walking is hard to describe. It doesn't happen all the time, but just a feeling of being off a bit. I'm not sure if its because I'm walking on top of the rocking, and that's creating this weird sensation. I used to feel like I was walking on a swaying suspension bridge, but that has gotten better the more I walk and reduce my fear/anxiety of walking. I do feel worse after driving and getting out of the car trying to walk. Like I'm getting off a rollercoaster type of feeling. I'm fine while driving. No cognitive symptoms or eye issues. If I rock in a rocking chair I feel totally normal, but as soon as I stop the rocking intensifies within me. I thought for sure it is mdds, but my vestibular physio said I'm a classic case of pppd. She said she has been seeing alot of pppd patients recently and that almost half of her patients daily are dealing with pppd. I thought that was interesting and also a bit comforting to know I'm not the only one dealing with this, although sad for us all that are struggling too. I'm going to definitely work on the acceptance part and trying not to be so anxious. Thanks again for all your advise and I hope your symptoms will get better in time as well!
@@Guitariac I appreciate your reassurance about the MRI! My vestibular physio reassured me last week as well that if she had saw anything alarming in her tests she would have already told me to go get an MRI. But anxiety is such an evil thing. Once it takes ahold of a fearful thought, it runs with it and foresees every worst case scenario. But I so appreciate the reassurance about it. I need to remember to listen to myself when I'm most logical and at my lowest anxiety level, not when I feel at my worst. In regards to your questions: No I did not get the VNG done. But I did have the maneuver done to check for bppv and showed no nystagmus. She also performed alot of tests (not sure the name) where she had to quickly move my head in both directions to make sure my eyes could remain focused on one spot. Many balance tests, etc. She did not think I needed any further vestibular testing based on her results from those things. So I am trying to trust her expertise and stop all the googling, lol. You are so right about it being difficult to accept this diagnosis, when you are feeling so horrible. When this first started I really thought I was dying. I actually went to the ER initially, bc I didnt understand why I was feeling the way I was. They told me I had anxiety. But who wouldn't be anxious when your rocking and swaying? It made me loose faith in the medical system. (I live in the United States). I feel like I have to jump through so many hoops to get the help I need. To your other questions: No hot flashes. And I have never really ever experienced vertigo before this all started. Maybe once after drinking too much in my early twenties, but it only lasted until the following morning. I dont feel any spinning or anything now, but did not realize that rocking and swaying are both considered to be vertigo as well. When I was a kid I had about 2 to 3 times where I can remember jumping on a trampoline at friends houses and everytime I got off, my vision would get all blurry (aura) and I'd get a massive migrane headache after. I was probably between the ages of (10 to 13 when each occurred). Through my teens I never experienced any migranes that I can remember. Through my twenties I maybe had a few, but not many migranes. But once I hit my 30s I started getting migranes about once a year. Usually triggered by bright lights I believe. Then last year I turned 37 and I feel like perhaps my hormones changed a bit and I had that headache last August but with accompanying vertigo feelings. I had no clue what was going on with me, as it was not the typical aura/migrane I had been accustomed to throughout my life. I think my hormones have shifted since I am getting into more middle age now. The only other thing I did different was rollerblade last summer several times during the month of July. I started feeling weird shortly after. I hadn't rollerbladed for about a decade prior to that, and sometimes I wonder if that motion messed me up somehow (mdds?). I did mention this to my vestibular physio but she believes it is more migrane related that triggered the pppd. It also makes more sense for it to be vm and pppd because of my ear symptoms and certain foods triggering me. I distinctly remember eating a yogurt last August and felt horrible right after. I'm still trying to figure out what triggers me. Just recently discovered onions are a trigger as well. As a result I've lost alot of weight as I've cut so many different things out and have had to relearn how to eat so to speak. I eat primarily plant based, with a little meat, very little sugar. I just want to feel healthy again, and will do whatever it takes. I used to run, play basketball, tennis. I want to do those things again and not feel these sensations. I did run a little on my walk today, so that is progress. I wish you well on your journey with this as well, as I know you have been traveling on this road far longer than I have! But I believe it will get better in time, day by day. This takes alot of mental strength to deal with something like this. There will be nothing you cant handle, once you make it to the other side! Thanks again for the conversation and discussion as well as answering all my questions!
@@Guitariac I will definitely try what you suggested next time my rocking intensifies and will let you know if I feel any different. I actually do think I tried doing that before and nothing changed. As at that time I was feeling alot of pressure in one of my ears, like it needed to pop. Just the same rocking forward and back, with an occasional pull to the left. I must confess, last week I got very anxious about my symptoms once again and decided to go to the hospital and ask for a CT scan. They did, and all came back clear. They couldn't do an MRI, but I figure a CT scan still rules out many things. I know MRIs are more detailed, but it did give me a bit of reassurance knowing everything looked okay on that. I could tell they felt bad for me...that I have been rocking/swaying for so long. They said , "we dont know how to fix your rocking". I told them I knew that, but that I need to keep trying to rule out things. It has been an anxious filled week for me. I really think my anxiety is causing a large portion of this now. Or at least perpetuating my symptoms. I've also had the weirdest symptoms come and go. Eye twitching, waves of nausea, a quick pain in my head that only lasts a few seconds, really cold hands and feet and shaking when I'm on the verge of a panick attack. I know it has to be my anxiety as the symptoms arent consistent and totally all over the place (except for the rocking). I will keep experimenting with foods as well though to see if that makes any more differences. I will definitely be in touch with you and feel free to ask/talk/discuss anything further as well. Thanks again for your support, experience, and knowledge about all of this!
The cocktail that has worked best for me has been Naratriptan + Meclizine + low-dose Clonazepam. But this combo is for immediate relief and not prevention. the migraine still lasts up to two weeks and there is a prodrome of a few days with neck stiffness and fatigue. Vestibular therapy only seems to help me once I've put out the fire of the main attack otherwise it seems to aggravate my symptoms. The hormones at the end of my cycle seem to bring it on. I've had Aura migraines since age 14 that affected my speech and made me numb on one side of my body and they became more severe when I was on birth control. I also have POTS and an unspecified episodic movement disorder.
The numbness on one side always throws me into a panic, also the fatigue. I swear I feel like I’m gonna die. I’m taking b1 and just seen that it can help for POTS and b1 crazy deficiency symptoms
She just described me. I developed migraines with visual aura at 16 yrs old, then at 54 they morphed into vestibular migraine. For several years previous to that, there were warning signs -- every time I would get a migraine I would feel like I was walking slightly crooked or leaning to the left side, but it was mild and wouldn't last. It was much worse when it first came on. The first 6 months were intense but over the next 3 years it slowly became a once in a while thing. My bad episodes are triggered mostly by barometric pressure changes and heavy wind storms.
I’m glad I came across this video! I have been diagnosed with BPPV about 5 years ago but my symptoms are getting worse. I now have bouts of head pressure, blurred vision, seeing spots, nausea, and of course dizziness. I’ve been treated for BPPV with Eply Maneuver. I also had “abnormal vestibular balance” issues after having a VSG test. I still have symptoms and doctors dismiss me. I’ve had MRIs and a spinal tap. I have a history of migraines from the age of 10. They went away in my late 20s. So now, I sit here dizzy and nauseous with zero answers.
I suffer from some of the same symptoms as you do. My headaches started over 40 years ago. Back then, research was so abysmal in Migraines. It tooks years to find a good neurologist. And even more time to create the proper management, medical regime and path forward. But research has finally been funded to the degree that patients like you and I are heard and respected. Keep the faith. It's better now than in the early 80s.
Are u feeling dizziness and nauseous constantly for 24/7?😩i've this feeling for 24/7everyday😩
@@zoyabattol754 I do, I had a radical hysterectomy & bilateral oophorectomy 18 months ago, I was diagnosed with vestibular migraines (hormone related) and I've been on a boat all this time. Its really really getting to me now.
Do you have auras and or hallucinations or feelings of huge ears etc...called Alice in wonderland syndrome? There can be help, discuss calcium blocker with your doctor...
I am so glad I viewed this video! I have the exact history of aura migraines from my late teens/early 20's that are described. I remember going to a doctor when these started for me when I was 20 years old and was diagnosed with 'Classic Migraines'. I was very relieved that it wasn't serious, and I only got a few a year. When the visual aura hits me (zigzag light show) I would take 2 ibuprofen and that would take away the headache that followed. Through the years I never needed to see a specialist for this migraine and as I got older, I was only getting 1-2 a year. Overall, I was very happy that my migraines had very little effect on my life. This video describes how the visual aura migraines change for people in menopause which is exactly what happened to me. On 11/12/21 when I was hit with a 1st time panic attack at work followed by imbalance, vertigo, dizziness, visual disturbance (very different from the zigzag aura from my classic migraine) .... While I had always been so healthy, I was now seeing all these doctors to figure out what was wrong with me. I was riddled in fear that I had some very serious underlying condition. I finally landed with a Hopkins neurologist on 2/28/22 who diagnosed with vestibular migraines. After that appointment I started the migraine diet, took ALL suggested supplements, some medications and continued my research of my own on VM and found Alicia Wolf and Dr. Beh. I have purchased their books. While I have come such a long way since 2021 and can go several days feeling well, I am still hit with VM symptoms of dizziness/imbalance that continues to remind me that I have this chronic neurological condition. After being super strict on the migraine diet I did start adding most foods back into my diet except for caffeine. My journey always continues to figure out triggers that cause my symptoms to come out.
What supplements have you taken?
Wow! I’m having a lot more of these vestibular migraine occurrences now that I am post menopause…….curious….. my own mother never had this BUT my dad and his mother had dizziness……..this is a fascinating condition….. Their doctors only checked for sinus, infections, incorrect medications, etc. . No talk about hormones, or dietary factors. Thank you for your work 💜
Ive had migraines since childhood. The vertigo just started about 2 years ago. I’m glad I know what it is. Thank you!
Thnx so much 4 saying medicine is key to the PT. I was Dx w/ Pos semi-Canal Hypofunction + Vestibular Migraine. I did PT for 2 mo but it made symptoms so much worse. I'd come home from PT unable to get off couch. I felt like I failed treatment. I only had zofran to stop throwing up all night. I wish even now I was offered dizziness meds!!
Brilliant! Thank you 🥰🙏
Oh my goodness. Yes! I’m either so used to the pain and now don’t feel it but the triggers are still the same. Flashing lights, noise, etc…
I suffered migraines in pubescence, now 62 and when Menopause hit and now post menopause my vestibular migraines have gone crazy… not so pain, but dizziness and nondescript changing symptoms auras, anxiety, panic, neck and hip pain, barometric pressures etc. massively cleaned up diet, but still ongoing. Wine a big no no!! 😢😓😞 I’m on beta blockers. Both my parents also suffered.
This is also my experience, I'm peri menopausal and my hormone changes have amped up my symptoms greatly, not sure if hrt is helping or hindering, I've bearly left the house for 4yrs.
Yes! I e had pain while younger. I alway said it changed to aura after having children. So it was insane with the aura which got dismissed bc I didn’t have pain! Thank you for addressing it! I thought maybe it was now my tolerance to pain. Doctors have said well if you don’t have paint then it can’t be a migraine 😢. I ve been in limbo for YEARS!!!
Good talk. However, it it important to make people aware that migraine of any kind is a threshold disease. Which means that each trigger raises you up the ladder to having an episode. This explains why you can have, say, red wine one day and have a migraine, and have it another and not have one. Trying to eliminate all the food triggers is ridiculous. It is important to track what triggers (stress, food, hormones, weather, etc) you are experiencing. We can only control certain things so when other outside things are affecting you like weather or stress, really watch the diet, the sleep, the hydration etc. Hope this helps someone.
Thanks for this wonderful info. I recently was diagnosed with VM and will be seeing Dr. Ross soon :)
I am UK based and have recently been diagnosed with VM and PPPD. No headache but constant dizziness and nausea. No history of traditional migraine, have had occular migraine twice in past six years but am just post menopause and had just stopped taking HRT in October with headaches up left side of head and severe symptoms in January.
Our NHS service is very stretched and trying to see a doctor is hard enough let alone a specialist. My husband did some research and found me a private ENT specialist who then sent me on to a balance specialist who works with vestibular physio. So so glad to have find them - despite the cost. And also now to discover so much info here - found the Dizzy Cook first. We have as far as I know nothing like this in the UK. Thank you for making this clear that it such a variable condition and I feel lucky to have got a quick diagnosis
How long did your symptoms lasted for? And did I felt nauseous and dizzy all the time?
@@zoyabattol754 it’s now towards the end of July and I have very few dizzy days now. I have been recommended supplements to take, no meds as I don’t get headache, I do exercises each day twice a day as recommended by a vestibular physio and have excluded food and drink triggers and have been testing a few items over the past two weeks and improvements have been really good. So far so good.
I find that barometric pressure is a huge trigger for me as are supermarkets.
@@ThumperKai did u feel nauseous everytime?
@@ThumperKai and when did u diagnosed that u've pppd? And when did you consult to the doctor? 👀please lemme know
@@zoyabattol754 yes for the first few months. Low level daily nausea. Drank ginger tea to help
@balancing act resources I have lots of trouble with screens of all kinds, the bigger the brighter the worse. They seem to be a trigger for VMs that last more than a week many times. I can’t work because everything requires computer work. I am wondering about purchasing a “gaming”monitor. They have options to increase the rate of refresh which helps to reduce that “undetectable” flicker. Any thoughts? When I was younger (I’m 58) I usd to get period migraines and they were made worse by fluorescent lights. Thanks
After a miscarriage I’m my 40’s and covid they started prior to that only regular migraines. Dizzy 24/7 and sometimes I get used to it but then after a few months these other ones happen that just cause a stronger dizziness out of nowhere and I feel like pressure in my head or like my sinuses and cranium are taking turns
Causing pressure and making me feel anxiety rocking swaying numbness agh I absolutely hate it. I no longer enjoy so many things.
Is tinnitus or ringging in one ear..can be a sign of vestibular migraine? Mam .tnx for the info.
Can a TBI to the vestibular system cause vestibular migraines, when no issues were present before injury?
Www
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Is calcium a problem. As in the body placing calcium in the inner ear where it should not?
I thought that’s why Dr Berg said to take d3 but with K2. I have to look that up
Having dealt with vestibular migraines for a decade, I only found out that this has been vestibular migraines this entire time about three months ago. It's gotten so bad to the point where I'm blacking out, losing vision in my left eye, and vomiting every day. I feel no hope. I'm also only 33 and I've survived two heart attacks this year and have asked about vestibular migraine medications and have been denied as I'm at heart risk. So I have 0 hope and purpose to live anymore and am at the end of the road as I've tried everything. I don't want to die, but it if this doesn't work, I may just have to put myself out of my misery
@@Guitariac So your symptoms are rocking? I'm currently rocking forward and back and occasionally side to side. I think it is either vm or mdds, but haven't been diagnosed yet.
@@Guitariac Hi! Thankyou for your detailed reply. That was very kind of you and its appreciated. I'm so sorry you have been dealing with this for so long. How do you cope day to day? Are your symptoms usually at a high level? Has anything helped reduced symptoms slightly? What triggered your symptoms?
I have been dealing with this for 9 months now. I have had bloodwork done, a few ekgs to check my heart, and also checked for bppv and other possible ear issues. The only thing I haven't done really is an MRI. But last week I met with a vestibular physio and she did several balance tests and looked at my eyes and checked for bppv. She was 100% confident that I am dealing with pppd as well as a possible migrane component (as I get fluctuating ear pressure at times, although not many headaches but I do get occasional migranes). So I am going to start Vestibular physical therapy to see if that helps some.
My symptoms are mainly just a slow rocking forward and back and occasionally to the left. The frequency and exaggeration has calmed down over the last few months but is still present the whole day and in every position. I dont feel the swaying when walking but I do feel a bit off in my head. Sometimes in the morning it is slow enough that I think it might be gone, but it usually ramps up more the more I do and as the day goes on. Stress definitely makes it worse! And my hormones!
@@Guitariac Hi again, Thanks for your detailed response!
I totally agree with you about trying/learning to accept the swaying/rocking in order to get better. It is so difficult at times, but has gotten a bit easier as the intensity has calmed down some. But there are days where I break down and am so frustrated by it. I worked out alot before this all started, but now I've been trying to walk daily (1 to 2 miles) along with all the Vestibular exercises. I eat super clean now. Drink no alcohol or caffeine. Only water. I sleep pretty good, except during the week before my cycle begins I have some trouble sleeping.
I know for me anxiety, stress, and a week before my menstrual cycle things get worse. I experience more symptoms during that time. (More anxiety, fatigue, ear pressure or fullness, occasionally hearing my heartbeat or a whooshing sound in left ear for a few seconds randomly along with a bit of tinnitus, and occasionally nausea or motion sick type feeling). I did notice that I need to eat frequently to feel better and certain foods made those symptoms better or worse (gluten , dairy). As a result I have not been eating gluten and very little dairy (similar to migrane diet). But once I start my cycle the only symptom I have is the swaying/rocking. Ive always had fatigue and a bit of anxiety during pms week, but not the ear symptoms (so perhaps those are VM related?). And when I do get a headache its usually during this time as well. Back in August when this first started I had a horrible headache(migrane) at the start of my cycle. Looking back I believe it was a vestibular migrane but just didn't know it. I felt dizzy and the floor felt like it was shifting, making it difficult to walk. My vestibular physio believes that's what started everything and got my brain "stuck" into pppd mode. During that month the symptoms were off and on. But because they weren't leaving it sent me into a horrible panick attack at the end of August. The swaying/rocking have been all day/everyday since that panick attack.
It's funny you mention the MRI. I believe if I could get one done, it might help calm more of the anxiety I feel around all this. I have been scared of the worst. My regular doctor said he needed a really good reason to order one and he didn't think I needed one based on his neurological physical exam and just my swaying symptom (plus all my bloodwork and everything was super healthy). I do have an appointment with a neurologist in July though( been waiting for months) to see what he thinks and maybe he will order one. In the meantime I'm working with a vestibular physio. She said she didnt think I needed an MRI either based on all the tests she did with me. But still there have been days where I'm so close to going to the ER to see if they can just scan my head for me lol (but I do think this is my anxiety/fear more than perhaps really needing one at this point). My symptoms have gotten better though and its reduced to just this slow swaying/rocking. I figure if it was something super serious I would progressively be getting worse and worse, right? But still, a clean MRI would provide me with some relief and rule out many scary things that I believe keep my anxiety going in the first place.
Are you able to drive or work at all? Thankyou again for your replies. It is nice talking with someone who is going through something similar.
The weird head feeling while I'm walking is hard to describe. It doesn't happen all the time, but just a feeling of being off a bit. I'm not sure if its because I'm walking on top of the rocking, and that's creating this weird sensation. I used to feel like I was walking on a swaying suspension bridge, but that has gotten better the more I walk and reduce my fear/anxiety of walking. I do feel worse after driving and getting out of the car trying to walk. Like I'm getting off a rollercoaster type of feeling. I'm fine while driving. No cognitive symptoms or eye issues. If I rock in a rocking chair I feel totally normal, but as soon as I stop the rocking intensifies within me. I thought for sure it is mdds, but my vestibular physio said I'm a classic case of pppd. She said she has been seeing alot of pppd patients recently and that almost half of her patients daily are dealing with pppd. I thought that was interesting and also a bit comforting to know I'm not the only one dealing with this, although sad for us all that are struggling too.
I'm going to definitely work on the acceptance part and trying not to be so anxious. Thanks again for all your advise and I hope your symptoms will get better in time as well!
@@Guitariac I appreciate your reassurance about the MRI! My vestibular physio reassured me last week as well that if she had saw anything alarming in her tests she would have already told me to go get an MRI. But anxiety is such an evil thing. Once it takes ahold of a fearful thought, it runs with it and foresees every worst case scenario. But I so appreciate the reassurance about it. I need to remember to listen to myself when I'm most logical and at my lowest anxiety level, not when I feel at my worst.
In regards to your questions: No I did not get the VNG done. But I did have the maneuver done to check for bppv and showed no nystagmus. She also performed alot of tests (not sure the name) where she had to quickly move my head in both directions to make sure my eyes could remain focused on one spot. Many balance tests, etc. She did not think I needed any further vestibular testing based on her results from those things. So I am trying to trust her expertise and stop all the googling, lol. You are so right about it being difficult to accept this diagnosis, when you are feeling so horrible. When this first started I really thought I was dying. I actually went to the ER initially, bc I didnt understand why I was feeling the way I was. They told me I had anxiety. But who wouldn't be anxious when your rocking and swaying? It made me loose faith in the medical system. (I live in the United States). I feel like I have to jump through so many hoops to get the help I need.
To your other questions: No hot flashes. And I have never really ever experienced vertigo before this all started. Maybe once after drinking too much in my early twenties, but it only lasted until the following morning. I dont feel any spinning or anything now, but did not realize that rocking and swaying are both considered to be vertigo as well.
When I was a kid I had about 2 to 3 times where I can remember jumping on a trampoline at friends houses and everytime I got off, my vision would get all blurry (aura) and I'd get a massive migrane headache after. I was probably between the ages of (10 to 13 when each occurred). Through my teens I never experienced any migranes that I can remember. Through my twenties I maybe had a few, but not many migranes. But once I hit my 30s I started getting migranes about once a year. Usually triggered by bright lights I believe. Then last year I turned 37 and I feel like perhaps my hormones changed a bit and I had that headache last August but with accompanying vertigo feelings. I had no clue what was going on with me, as it was not the typical aura/migrane I had been accustomed to throughout my life. I think my hormones have shifted since I am getting into more middle age now.
The only other thing I did different was rollerblade last summer several times during the month of July. I started feeling weird shortly after. I hadn't rollerbladed for about a decade prior to that, and sometimes I wonder if that motion messed me up somehow (mdds?). I did mention this to my vestibular physio but she believes it is more migrane related that triggered the pppd. It also makes more sense for it to be vm and pppd because of my ear symptoms and certain foods triggering me. I distinctly remember eating a yogurt last August and felt horrible right after. I'm still trying to figure out what triggers me. Just recently discovered onions are a trigger as well. As a result I've lost alot of weight as I've cut so many different things out and have had to relearn how to eat so to speak. I eat primarily plant based, with a little meat, very little sugar. I just want to feel healthy again, and will do whatever it takes. I used to run, play basketball, tennis. I want to do those things again and not feel these sensations. I did run a little on my walk today, so that is progress.
I wish you well on your journey with this as well, as I know you have been traveling on this road far longer than I have! But I believe it will get better in time, day by day. This takes alot of mental strength to deal with something like this. There will be nothing you cant handle, once you make it to the other side! Thanks again for the conversation and discussion as well as answering all my questions!
@@Guitariac
I will definitely try what you suggested next time my rocking intensifies and will let you know if I feel any different. I actually do think I tried doing that before and nothing changed. As at that time I was feeling alot of pressure in one of my ears, like it needed to pop. Just the same rocking forward and back, with an occasional pull to the left.
I must confess, last week I got very anxious about my symptoms once again and decided to go to the hospital and ask for a CT scan. They did, and all came back clear. They couldn't do an MRI, but I figure a CT scan still rules out many things. I know MRIs are more detailed, but it did give me a bit of reassurance knowing everything looked okay on that. I could tell they felt bad for me...that I have been rocking/swaying for so long. They said , "we dont know how to fix your rocking". I told them I knew that, but that I need to keep trying to rule out things. It has been an anxious filled week for me.
I really think my anxiety is causing a large portion of this now. Or at least perpetuating my symptoms. I've also had the weirdest symptoms come and go. Eye twitching, waves of nausea, a quick pain in my head that only lasts a few seconds, really cold hands and feet and shaking when I'm on the verge of a panick attack. I know it has to be my anxiety as the symptoms arent consistent and totally all over the place (except for the rocking). I will keep experimenting with foods as well though to see if that makes any more differences.
I will definitely be in touch with you and feel free to ask/talk/discuss anything further as well. Thanks again for your support, experience, and knowledge about all of this!
So if caffine and chocolate and sugar are not the triggers, well at least immediately. Then what?
Yes let's have a conversation about migraines for people with migraines and then smack on the microphone. That won't cause any problems or pain AT ALL
The cocktail that has worked best for me has been Naratriptan + Meclizine + low-dose Clonazepam. But this combo is for immediate relief and not prevention. the migraine still lasts up to two weeks and there is a prodrome of a few days with neck stiffness and fatigue. Vestibular therapy only seems to help me once I've put out the fire of the main attack otherwise it seems to aggravate my symptoms. The hormones at the end of my cycle seem to bring it on. I've had Aura migraines since age 14 that affected my speech and made me numb on one side of my body and they became more severe when I was on birth control. I also have POTS and an unspecified episodic movement disorder.
The numbness on one side always throws me into a panic, also the fatigue. I swear I feel like I’m gonna die. I’m taking b1 and just seen that it can help for POTS and b1 crazy deficiency symptoms
As professional do you organize course for therapists? Can you share details
Can being on a small catamaran for 7 days trigger this?
How do I find a good Doctor?
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