Hello to everyone.
I was starting to feel better this month, meaning that after 14 months of debilitating 24/7 motion feelings (especially when sitting still / lying down) I was able to lie down and sleep with almost bearable motion feelings. I was starting to think I am maybe getting better, until yesterday night.
I havenāt listened to loud music for a while now, since I didnāt feel like it, but yesterday I decided to do so, and I listened to somehow loud music from my pc, for almost 2 hours. I was feeling the same degree of dizziness (baseline), until 3-4 hours later. Then, I suddenly felt the bobbing-rocking-floating dizziness and lightheadedness coming full force. Each time I tried to lay down it was a nightmare and I woke up hundred of times by ādizziness brain zapsā.
Today I feel horrible too. I am not able to lie down.
I really wonder if the loud music could have triggered this or not. I also thought about Superior Canal Dehiscence but I think that if you have this the vertigo comes immediately after the exposure to the noise stimulus, not 3 or 4 hours after. Is this true?
I would really appreciate any thoughts about this.
Has anyone of you felt that way?
I am very sensitive to noise. I have a friend whose house is usually very noisy, she has the TV on in the lounge room, the radio in the kitchen (both rooms are connected) and she wants to talk with me. My brain is unable to handle this, I get slightly dizzy and nauseous. My friend now shuts down the TV and the radio and we can then talk.
Similarly, about two years ago I decided to try a new gym. This gym had lots of cardio, at least 10 TVs and very loud music. I stayed for about 1/2 hour, but then I had to leave because I started to feel sick. My current gym only has strength training equipment (no cardio), no TV and no music. So it is quiet, my brain is very happy about that.
For Superior Canal Dehiscence the sound induced nystagmus is basically instant per sound.
There is a test where they hook electrodes to detect eye movement and record with sound produced from headphones. I have had thatbdone and the person testing me was very surprised, I rememeber her saying she cpuld see them move quite a bit.
I had another doctor say that if you take a breath, plug your nose and close your mouth and blow, if you csn dizzy then itās possible you have superior canal dehisence, if you donāt then you do not have it.
I have had sound induced nystagmus and sound sensitivity, pressure waves making me dizzy and also giving me nystagmus, I also had vertigo episodes at the time. Turns out c1-c2 sublaxations were causing those sensitivites.
I say this to say there are more causes to sound related dizziness than super canal deshisence.
To be brutally honest I must admit my first reaction on reading your post was āwell what a stupid thing to doā but in fairness my perspective of this condition comes from my own experience which is not yours. Looking at your reaction from my own experience Iād say put SCD out of your mind for several reasons. For one itās extremely rare, for another apparently itās easily diagnosed and eliminated by scan and lastly IMO your reaction is typical of both migraine and VM. Loud noises and most particularly ongoing loud noises such as you subjected yourself to are known to cause headaches and migraine. VM is classed as a migraine variant and dizziness is classed as an alternative to the migraine headache in many people, myself included. So Iād imagine thereās your solution. You seem to have chosen a rather brutal way to find your triggers but you certainly seem to have hit upon one here. What you have to remember is that that loud music as well as vibrating through the airwaves was also vibrating through your body. Iām as sensitive to vibrations as you are. Written up in my PD. From that viewpoint that noise isnāt dissimilar to your āmovingā aluminium floor. Both vibrate through the body. No at all familiar with your med treatment regime but obviously your tolerance thresholds arenāt high enough to take such stimulation and you need to practise some trigger avoidance if you really want to get the VM under good control. Meanwhile I do hope everything soon improves for you.
I can totally relate to that, Katharina.
Seems like our brains can not handle overstimulation. I think that the environment you describe would be too much even for a healthy person!
Thank you for the useful information, Gutwell!
I should really run those tests.
Today I asked a local medical center for a CT of the temporal bone with high resolution, specifically 0,6mm that is required for diagnosing SCD, but they only did at 1,00mm, so I had to look for another center in another town and Iām waiting for an answer from them.
I do have a lot of dizziness when doing the valsalva and everything involving vagus nerve (sneezing, coughing, laughing, singing, crying), including the test with the breath you mentioned. And I also hear a lot of my internal body sounds (joints moving, heart, breath, sometimes eyes).
Iām also looking about problems in the upper spine (CCI, AAI, Chiari) that could cause those symptoms.
It was very interesting to read about different causes of dizziness associated with loud sounds.
Seems like we have a lot of similar symptoms, Helen. I remember reading about the exacerbation of your motion symptoms caused by vibrating floors or just the dog panting in the car. I also find it extremely difficult to sleep with someone next to me as the slightest movement of them makes me feel like Iām in a violently floating boat. I feel the same way with even the slightest movement of myself, especially when lying down (moving my finger, swallowing, even blinking the eyes!)
But as long as the music trigger is concerned, I find it pretty weird for the symptoms to start a few hours later and not settling down to the baseline after 2 days.
Same night I tried to play a little bit guitar (given it up because of the symptoms) and I could feel the vibration of it inside me and it made me feel a bit off, so I tried to play keeping it somehow away from my body. I wouldnāt tell it to anyone cause I find it āway too muchā to be happening, but something tells me it would probably make sense to you.
Iām actually concerned about the SCD as I have some symptoms identical to it. I can hear a lot of the internal body sounds (heart, joints cracking) and that becomes multiplied if Iām wearing earplugs. Then I can also hear my eyes moving.
But, mostly, I get extremely dizzy whenever I do something āvalsalvaā. If I laugh -even for a few seconds- I get pre-syncopal. The same if I sing, cough, sneeze, and even talk.
I also have POTS, so I donāt know if these could be explained by autonomic dysfunction.
Iām currently on 15mg inderal for POTS, but Iām about to switch it to ivabradine to see if it helps with atrial fibrillation, atrial tachycardia and PVCās.
The neurologist prescribed me an SSRI and Xanax for sleep, but I have not taken them yet, as I discovered the forum some days after the medical appointment and I found myself in it, so I thought it would make sense if I first try Effexor / Topamax / Amitriptyline or something given for MAV, to see if I actually have this. Itās been weeks since I e-mailed her, but she hasnāt replied to me.
Itās also been 14 months of taking Antivom (given by ENT), and though it doesnāt help at all, every time I try to stop taking it I suffer from uncontrollable and totally visible body sway. Every doctor I ask has no idea about it and they donāt think that itās possible, but it happens every single time I stop taking it. I really want to cut it off but I donāt know howā¦
Unfortunately, every doctor dismisses me saying that thereās no way I have 24/7 MAV. Same thing happened some days ago when I went to the ENT for a virus I had, he said that he hasnāt seen anything like that (24/7 motion symptoms), and that I should go to a psychiatrist (I told him I have already gone to a lot of psychiatrists who assured me about my sanity and told me that my anxiety is symptom provoked).
The truth is I doubt myself too a lot about having MAV, since the symptoms of bobbing-rocking-swaying-floating are always present, every single second of the day and night. The only syndrome that could explain this is MDDS and I just canāt tell anymoreā¦
I feel so sad, because music has always been for me my whole life, what defines me. I used to be a musician, singing and playing guitar and thatās what Iāve always dreamt of doing for my whole life and that was keeping me through. I tried to comfort myself thinking Iām still able to at least listen to music, for as long as I want to. I gave up using headphones and now listen to music from the speakers. Seems like that this is gone tooā¦
Sorry for the long messageā¦
Thank you so much for your answer and your kind words. Hoping youāre feeling well too. 
I have definitely been triggered by music. Absolutely.
Music and sound in general to be honest tormented me.
I lived day and night with earplugs in, slept with them even.
I remember going down the road once and someone driving by with the loud thumping bass music that I could literally feel in my bodyā¦. It made my head spin immediately!
I donāt think that was even the noise level honestly, it felt as if the sound waves penetrated my headā¦ it was bizarre and scary.
A thousand times, a thousand waysā¦ sound whether it was music or otherwise made my vertigo worse.
I just wouldnāt believe that loud sounds could cause such aggravation of symptoms until I read it!
I always wear earplugs at night, as the slightest sound can knock me off of sleep. Wearing earplugs every night for so many years now is I believe one of the reasons my tinnitus has gotten worse over the years. But I guess, for people like us with such sensitivity and an already pretty distorted sleep, thereās no other way.
I was also thinking about wearing them when going out of home, as my house is in the busiest road of the town and stimulus like the one you described with the car easily put my body in an extra flight/fight mode daily. I absolutely feel the vibrations inside my body too, even if Iām home and a car like that drives down my road!
I live in Greece, one of the countries with the worst driving behavior, so cars with insanely loud bass music and indescribable noisy motorbikes are a common daily phenomenon here.
I see you use past sentence in your post, so I guess youāre feeling better now. Hope youāre getting better every day
Oh dear. Really sounds as if you are being given an extended version of the usual runaround between consultants that most MAVers experience trying to obtain a meaningful diagnosis. Some people spend years trying to get a diagnosis and others seem to wear out several pairs of shoes in the process. The journey itself can make one dizzier than you were to start with. Talk about revolving doors.
Yes I get your guitar reference. Did you ever read my bit on sitting on a tubular chair or the piece on wearing a different pair of shoes? All indications everything has gone ultra hypersensitive. I even read references to people reacting to the vibration from using a hand-held blender/grinder!
From reading your further detailed description, as you say, sounds as if you may indeed to a candidate for SCD. Iāve never experienced hearing my eyes move or anything similar. Donāt however let any specialist āassureā you you cannot have 24/7 symptoms with MAV. It wouldnāt take me two minutes to find 24 and more real individuals on here who suffer that way. Experts opinions vary as to why. If they refuse to accept itās a continuous attack then just throw the word āinterictal symptomsā at them instead. Either way tell them it happens. And it can last for years. Just look in my diary.
Best advice I can offer is you really need to find an expert at a decent balance clinic who can give you a thorough examination and come up with a meaningful diagnosis. Going about on your own trying to do it piecemeal will take years and never cover all possibilities. I wouldnāt rely on eventually being able to try a few preventatives in the hope they may prove that what you suffer with is MAV. Worst case scenario is that proves a waste of even more time. Any chance you can locate that expert? Meanwhile take better care of yourself. I was pleased to read your comments to @Katharina about overstimulation. Shows you are beginning to understand some of the finer points.
Had to look that one up. SERC, as I know it, works on the inner ear and is used in Menieres. Very recently some medics have used it for MAV. So it may be working. Keeping that body sway at bay. Iāve had visible body sway a lot more than Iād imagined or noted actually according to him who shares my space so he should know. Now that might be a clue.
Have I tried to find the right doctor to work with meā¦
Just since the last year Iāve gone to over 30 doctors, Iāve been to the ER a lot of times, Iāve traveled by car to another town a few times to go to the ER there with a bag of clothes ready to take the first flight to whenever thereās a big hospital, Iāve seen all of the ENTās and neurologists in my town, I traveled to Athens and was hospitalized at one of the best neurological hospitals in country, in July I traveled to the other end of the county just to see a doctor, I travel by car to another town to find a new doctor almost every month. Right now Iām planning new appointments with new doctors (the only doctor labelled as neuro-otologist I was able to find through Google search) and Iām about to plan a hospitalization to another hospital out of town. I have seen some of the best and well known neurologists in Greece.
No one has ever had the slightest clue. All I keep hearing EACH and EVERY time is:
āI havenāt seen anything like this in my career.
Youāre the most rare medical case Iāve ever seen.
Youāre an absolute mystery.
Your symptoms are so complex and unique that none of us will be able to help you.ā
In my latest neurologistās doctor appointment I had to travel again by car, I hadnāt slept for even a minute because of the extreme dizziness and when I arrived I was almost in catatonia. I begged her to not give up on me as everyone else has done, as I was starting to want to give up entirely, I said to her that I havenāt got any more strength to see another doctor, that sheās my last hope. She then said the same monologue and then I cried so hard that when I arrived back in my town they drove me to the ER pre-syncopal and I fainted in the backyard.
Iām starting to believe that I am all alone in this.
Itās so unbearably hard trying to figure this all by myself without being a doctor. Iāve been doing this for the last ten years and I just canāt do this anymore. But do I really have another choice?
Iāve been hearing āitās just anxietyā since I was 11 years old. If I hadnāt keep on searching day and night, I still wouldnāt be diagnosed with what Iām diagnosed now, a genetic connective tissue disorder, dysautonomia, atrial tachycardia and plenty of other syndromes caused by these.
I will read more of your experiences being written here, for sure.
Thank you for your useful information, for your advice and for trying to help, Helen.
I appreciate it.
It sounds like you have been going through hell, I am very sorry to hear this!
I remember you mentioning that you live in a house/room with aluminium floor that moves when you walk on it. And that you live on a noisy street. I know from myself that I could not live on a noisy street and/or in a room that moves, I would never have improved in my VM. So my question to you is: Are you able to change your living situation, i.e. move to a house/room in a quiet neighbourhood that does not move? I think that you need to get the basics right in order to get better.
You also mentioned in another post that you are unmedicated. Why is this? Did the doctors suggest medication and you felt that you do not want to take them? Or did they never mention any medication? I am on Pizotifen and I found that it significantly improved my condition.
I really hope that you can find something that works for you!
Thank you so much for your response and your kind words, Katharinaā¦
I understand that the environment in which Iām living triggers me more, but unfortunately thereās no other choice right now. Here in Greece, the last 3-4 years we have a huge problem with renting homes, as they all have become Airbnbs. So they only rent them for 6-8 months and then you have to leave.
I was searching for a house for over a year, and seeing I had no other choice I configured a space that my parents own to a house. Thatās why it has this specific structure, because it was not supposed to be a home in the first place. It took me one year to make it livable and I have just completed it. I invested all the money I had there, because I didnāt have another choice. So, I really donāt know what to do nowā¦
The doctors Iāve been through all those years are so clueless about my situation, that they prescribe me whatever I suggest them to. Even the cardiologist gave me the medication I suggested, and when I asked about the dosage he said to me to do whatever I believe! Same with neurologist.
So, now Iām about to start 3 new medications, all of those suggested by me. I donāt feel comfortable with that.
I kept a note of the medication you are taking.
Thank you for the suggestion.
Really great news that itās helping you!
Thank you again, Katharina
Sounds like my idea of heaven since Iāve had so many years to research. Ironic isnāt it. You get an open charter and Iāve just had to fork out a ridiculously large sum ājustā to get a specialist to suggest in writing that I (a) should, if I wish, have the option to try adding in an additional drug and (b) suggesting a couple she approves of. All to back up my suggestions. Really have to laugh about this otherwise weād cry.
Iād certainly not be comfortable, on your behalf, about you or anybody else starting three new drugs all at once. Quickness way to total confusion Iād say.
Just like you said it, Helen.
We have to laugh, otherwise we would cry all day long, realizing how absolutely ignorant most of the doctors who treat us are.
As Iāve read a lot about your situation and your progress, Iām quite positive you have gained much more knowledge about MAV than most of the doctors you see have.
Thank you for your kind advice about the medication.
Yes, Iām going to start one drug at a time in a really small dose and see how it goes for a period of time and then adjust the dose or add up a new drug.
Iām really sensitive in medications so I have no other choice but do it extremely slow and gradually.