Hello to everyone.
Iām new to this forum. Iām 27 years old.
Iāve been struggling with severe dizziness through my whole life, due to POTS and BPPV.
Since last year I developed all the symptoms that define MAV and MDDS.
I really cannot tell which one I have but I really hope it to be MAVā¦
I cannot stay still even for seconds as I feel I could pass out due to the rocking/swaying/bobbing/floating/pushing sensations. Lying down itās the worst.
I have a question and I really need your help.
I have moved to a new house the past 6 months or so. The one of the two rooms is made from aluminum and itās tilting, the ground is uneven. And whenever I walk in this room I feel dizzier. Also when I walk, because of the structure of this room, the floor is actually bobbing a little (enough to cause the water in the bottles to move). When I sit in this room I feel like there are minor earthquakes and yesterday I realized that EACH time the wind blows, the house is ACTUALLY moving. Like minor earthquakes due to vibrations from the wind.
I am terrified this might cause my symptoms to progress into MDDS, if I donāt already have it, due to daily 15hour exposure to this passive movement.
Could this happen? Iām so scaredā¦
Thank you so much for your answers in advance.
Welcome!
Did you do a lot of lifting during that move? For a period of my illness I found it made my symptoms worse to lift heavy objects. It would cause relapse.
If thatās the case I imagine symptoms will settle down again about after a while.
Iāve not seen any connection with āAluminiumā material mooted on this forum. Red herring?
However moving structures will definitely irritate your condition. You might get used to it though. I wonder if the stability could be improved. If not you might want to move to something more stable? Thatās annoying for you!
Anxiety is a big challenge with this condition and might even prevent you from improving. Consider seeing a qualified psychologist to discuss your situation and try to lower your anxiety levels. A big challenge I know! But remember this condition will almost certainly not hurt you and whilst the sensations might be very uncomfortable they are just that: sensations.
Like @turnitaround from my experience Iād say aluminium is a red herring. What you need to look towards is the effect of vibration/unstable floors etc. Your increase in symptoms is almost sure to be connected with the vibrations and the tilting floor. Not a good environment for a MAVer for sure. Obviously itās not the cause of your condition but itās aggravating trigger. Whilst having active VM the brain tends to avoid faulty messages it canāt rely on that are coming from our ears and rely much more on vision and Proprioception (joints, skin etc and perhaps most particularly in your current situation feet) for information. Without good output from the ears itās other sources prove less reliable, Hence problems occur. If you search this site for āvibrating floorā youāll find my own previous entries relating. Iāve been extremely sensitive to such things throughout. Lots of references to the ill effects of high winds likewise.
Just want to reply here that I feel your anxiety. Over the years I have convinced myself that objects in my home trigger my MAV, from vintage ceramic lamps to certain items of clothing, makeup etc. Etc. Iām still not sure if itās real or just in my head. I think the other posters are correct that itās more likely the movement than the aluminum. Iām trying to use mind over matter these days to try and conquer my perceived reactions to various triggers. Sometimes it works!
Vintage bulbs definitely can exacerbate symptoms. They are so damn pretty though!
Surprisingly this was lamps without bulbs! Brought the lamps home from antique store and suddenly couldnāt be in the same room with them. Insane! Thatās why I wonder if itās in my head sometimes.
@turnitaround @Onandon03 @Kier
Thank you so much for your kind responses!!
Sorry for the delayed response but I had some pretty bad days with dizziness and I also got an infection and I had to go to the hospital.
My English is not very good! The way I said it, it seemed like I was referring to the element āaluminumā. What I meant by saying that one room of the house is made by āaluminumā was that this specific room is constructed by iron, so the structure is not very strong and stable, causing the floor to bounce, by my own movement and by the wind, aggravating my symptoms. The floor also is tilting.
I didnāt do a lot of lifting cause I also have cardiac arrhythmias, so Iām trying to be careful.
Youāre absolutely right in what youāre saying.
All of my balance systems are affected
[eyes-> binocular vision dysfunction , pots
ears-> mav , pppd , bppv , (mdds?)
proprioception ā hypermobility of the joints (possibly eds syndrome).]
So, Iām overly sensitive to almost everything!
Iāve had a lot of years of psychotherapy for the anxiety and depression caused by these disorders. Psychotherapists tell me they canāt actually help me as even though I do everything they ask me to, the emotion stays the same, as the symptoms are always there. Also I canāt practice any meditation technique, because I have to consciously subtly move my body every second Iām awake, so I donāt feel the internal movements so violently, making it almost impossible to relaxā¦
Thank you again, everyone, for your response!! :- )
Your English is great! 
And thank you for writing in English 
It was a little ambiguous but I understood that you might have meant the structure, so all good. Donāt be too hard on yourself and I hope you find a solution to this soon.
This would also drive me crazy too! 
Thank you so much for your kind words, @turnitaround !
Iām glad Iāve found this forum, I feel somehow less aloneā¦
So sorry to hear how badly having vestibular issues has affected your quality of life. Thatās really rough. I hope somehow you manage to find some well deserved relief in the not too distant future. Donāt give up trying whatever you do. Obviously Iām totally unaware of your domestic circumstances but being as hypersensitive and afflicted as you are if I was you Iād want out and away from any unstable living accommodation. Iām highly medicated and much improved but since VM my tolerance of vibrating floors and unstable surfaces is virtually zero so Iād suspect yours may be much the same. Constantly aggravating your symptoms isnāt going to do anything to help you improve. Trigger Avoidance is a part of the prevention package. Fuller details of my own experiences are in my PD. Try October 2019 section.
Thank you so much for your kind words, Helenā¦
Itās violently rough, yesā¦
Thank you for your kind advices, the truth is Iām seriously considering of moving from this house as I donāt see any other solutionā¦
Does your medication work? Iām unmedicated because I still donāt have an official diagnosisā¦ I suspect MAV but no doctor ever mentioned itā¦ Iām afraid I could also have Mdds as the symptoms get so much worse after a car rideā¦ Also my symptoms started in the summer, when I was in the sea about 5-8 times, for almost 20 minutes each timeā¦ I really donāt know anymoreā¦ Iām desperateā¦
Time to go see a specialist and get something sort out. Whatever you are suffering with now itās chronic itās not likely to go away on its own. Of course preventives work. As I said read some if my diary. One example. I was totally photophobia, dare not leave the house. So bad I couldnāt go to the hospital to see my newborn niece. Yesterday I sat out in the sun for over an hour reading and when I saw the Mail van deliver I walked out to my mailbox (some distance from the house) without either a sunhat or a walking stick in bright sunshine. Make that appointment.
Itās so pleasant and hopeful that you made such a good progress, Helen!! I really hope you keep on recovering, day after day!
I will read them, absolutely!
I traveled to see a neurologist a month ago and she said that Iām such a rare case that doctors wonāt be able to do much, no matter where I go toā¦ Iāve been to hundreds of doctors since last year, and each and every one tells me the exact same thing.
The good thing is that this neurologistās husband is an ENT and works in the biggest hospital of my island and they are going to get me to stay in the hospital for some days while calling doctors of every medical field to talk about my case.
I also have EDS and POTS so itās actually pretty compilateā¦ 