Hello to everyone.
I’m new to this forum. I’m 27 years old.
I’ve 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 MAV…
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 it’s 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 it’s 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 don’t already have it, due to daily 15hour exposure to this passive movement.
Could this happen? I’m so scared…
Thank you so much for your answers in advance.
Hello to everyone.
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 that’s the case I imagine symptoms will settle down again about after a while.
I’ve not seen any connection with ‘Aluminium’ 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? That’s 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 I’d 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 it’s not the cause of your condition but it’s aggravating trigger. Whilst having active VM the brain tends to avoid faulty messages it can’t 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 it’s other sources prove less reliable, Hence problems occur. If you search this site for ‘vibrating floor’ you’ll find my own previous entries relating. I’ve 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. I’m still not sure if it’s real or just in my head. I think the other posters are correct that it’s more likely the movement than the aluminum. I’m 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 couldn’t be in the same room with them. Insane! That’s why I wonder if it’s 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 “aluminum”. What I meant by saying that one room of the house is made by “aluminum” 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 didn’t do a lot of lifting cause I also have cardiac arrhythmias, so I’m trying to be careful.
You’re absolutely right in what you’re saying.
All of my balance systems are affected
[eyes-> binocular vision dysfunction , pots
ears-> mav , pppd , bppv , (mdds?)
proprioception → hypermobility of the joints (possibly eds syndrome).]
So, I’m overly sensitive to almost everything!
I’ve had a lot of years of psychotherapy for the anxiety and depression caused by these disorders. Psychotherapists tell me they can’t 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 can’t practice any meditation technique, because I have to consciously subtly move my body every second I’m awake, so I don’t feel the internal movements so violently, making it almost impossible to relax…
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. Don’t 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 !
I’m glad I’ve found this forum, I feel somehow less alone…
So sorry to hear how badly having vestibular issues has affected your quality of life. That’s really rough. I hope somehow you manage to find some well deserved relief in the not too distant future. Don’t give up trying whatever you do. Obviously I’m totally unaware of your domestic circumstances but being as hypersensitive and afflicted as you are if I was you I’d want out and away from any unstable living accommodation. I’m highly medicated and much improved but since VM my tolerance of vibrating floors and unstable surfaces is virtually zero so I’d suspect yours may be much the same. Constantly aggravating your symptoms isn’t 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, Helen…
It’s violently rough, yes…
Thank you for your kind advices, the truth is I’m seriously considering of moving from this house as I don’t see any other solution…
Does your medication work? I’m unmedicated because I still don’t have an official diagnosis… I suspect MAV but no doctor ever mentioned it… I’m afraid I could also have Mdds as the symptoms get so much worse after a car ride… Also my symptoms started in the summer, when I was in the sea about 5-8 times, for almost 20 minutes each time… I really don’t know anymore… I’m desperate…
Time to go see a specialist and get something sort out. Whatever you are suffering with now it’s chronic it’s 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 couldn’t 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.
It’s 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 I’m such a rare case that doctors won’t be able to do much, no matter where I go to… I’ve 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 neurologist’s 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 it’s actually pretty compilate…