HELP!
I heve been suffering from a strange condition that I donāt even know what it is.
3.5 months ago, I was at work and felt sick (nausea, light sensitivity, sound Sensitivity headache, ringing in the ears). I went to the toilet and when the toilet seat dropped my whole body startled for seconds because the way my ear perceived the thudding sound of the toilet seat was like if it was a nuclear bomb exploding right next to me. I went to my office and 30 mins later I left my office and was standing in the corridor waiting for the elevator and all of a sudden I felt the floor shaking so hard. I almost passed out. My coworkers lifted my up and I went home to get some sleep in hopes that I would wake up next morning and all this would be gone. Unfortunately, I woke up to find out I was still stuck with these symptoms and that a new frightening, disabling one showed up. āTrampoline walking sensationā, the ground pushes me up like a trampoline whenever I walk. A few days later I noticed a new symptom, vertical double vision of writings on digital screens. Sound and light sensitivities are gone now. But all other symptoms including the trampoline walking sensation which is the worst are still torturing me. If you know anything about it PLEASE HELP!!
Welcome Dom and sorry you are suffering.
We call it āMashmallow Floorā and itās a very common symptom of VM & MAV
Hello and welcome, trampoline floor is probably my most detested and persistent symptom. I think its common with other vestibular disorders as well as MAV, like PPPD and MDDS. Mine gets worse if Iām tired or have been standing up for a long time. It can fluctuate throughout the day. Mine came on very suddenly as well.
I was fine one day and then halfway through the next I got the spongy floor sensation for the first time. It was actually my first clue that something was amiss. Have you seen any doctors to discuss your condition? Have you considered trying any medication?
Yeah, I have been to 12 doctors of different specialties so far. I did every single test known to man and nothing. The problem is no doctor has given me a diagnosis and I donāt think my problem is VM because I donāt have any history of migrane attacks. It just came on in an eye blink. And also because there are other potential scenarios that are more likely to be valid than VM. For example, a few days before my onset I felt my neck was super stiff so I tilted my neck downwards and when you do that there is a ligament called nuchal ligament that becomes visible then I firmly massaged it until I felt tingling in the right side of my head. 2) the day of my onset I bent my neck laterally and it hurt me so hard and a few hours later everything just started. 3) I used to run on a treadmill 2 months before and I would do some awkward stuff on it like jumping while itās running and do skate-like steps until one day I felt my ears were like full of air. I also got COVID-19 in 2020 and all my symptoms were neurological rather than respiratory and then it has become long haul covid over time.
Stiff neck is another sign of a vestibular issue.
thatās a weird one!
Well, assuming itās VM or whatever, do you think we can heal? Anyone here reported their recovery from this condition?
Please take a look through the site, especially #success-stories-positivity
Improvement is very individual but most people make massive progress.
Thanks, James, I hope one day I could post on that section.
Iām sure you will! Wishing you the best of luck (as Iām sure everyone here does)!
btw, in the lead up to symptoms did you have any undue stress?
Wow, thatās amazing ā¦ I managed 5, and as a result ended up with 2 different diagnoses. Itās all very confusing and you begin to realise medicine doesnāt fully understand the mechanisms (but treatment advice is often good).
Agreed, I have VM/MAV diagnosis from my Neurologist, whereas the ENT said VM caused PPPD. Frankly they could both be right or wrong. Its entirely possible that I have a background of migraine thatās now led to PPPD. Its certainly flippin persistent.
I decided to go on Effexor as I saw it could help both conditions. I certainly have typical migraine symptoms like ear popping, clicking, hyperacusis in right ear, neck stiffness, sensitivity to meds, light and motion. The trampoline floor and fluctuating imbalance seems more typical of 3PD. So its entirely possible I have more than one condition going on.
There were a lot of job interviews for different companies 1.5 months before my symptoms, but eventually all three companies accepted me and I got to chose what I thought was best. I was so happy I got the job that I wanted but then stress came back again bc I had to get some paperwork done. I worked 8 hours +2hrs commuting and for the first week I wake up early in the morning to get the papers and then go to work. So I barely got any sleep this week. But my onset was 3 weeks later.
Thereās also a strange attack a few days before my onset. It was lunch break and I left my pack of cigarettes on a table and then It disappeared. So I had to go down to the ground floor to report that to the facility team and then I found myself in the elevator going up and down having no clue where the hell I was or where I was supposed to go. Then I realized that I was going to the ground floor and when I went down for the last time and found the guy from the facility team and I couldnāt say a couple of words bc I felt my body was totally dehydrated all of a sudden I couldnāt breathe I felt like I was dying. But I felt better in a few minutes. Idk if this was a panic attack or something else (actual dehydration or blood flow cutoff).
Tell me about it! They are all the same, man. Idiots.
I sometimes feel just like you like I may be dealing with more than condition. Itās bc whenever I read about a condition I see some of my symptoms. But I think the rapid onset and having no history of vestibular disorders proves that wrong. Itās all connected.
Yeah the initial attacks are very unsettling and strange because youāve never experienced them before. This sounds akin to a derealization attack which was what hit me the first time.
excessive stress causes free radical producing inflammatory compounds that can damage cells/functional components as well as metabolic systems that are particularly sensitive to oxidative stress ā might be central to migraine/other disorders of vestibular system. would have to find the poll but im pretty sure most people on this forum reported stress before onset of symptoms
Hi @Dom i get this trampoline symptom sometimes. I used to have it constantly but havenāt felt it for about a month. Although Iām having it today (makes sense because Iām ovulating)! The most helpful thing for me with this symptom is to stay mobile throughout the day and when I feel the sensation, just letting it exist instead of tensing up when it happens again. Iāve gone to Vestibular rehabilitation therapy at Vestibular atlanta and theyāve analyzed my imbalance and given me specific exercises to retrain my brain. This takes time and must not be over done. Having this occupational therapist alongside me has made a significant difference in my balance issues. Also you could try to avoid caffeine, chocolate, and MSG for starters. These may be triggers as they are the most common.
Hello
Yes, it sounds very much like migraine-related vertigo, which goes by a few other names like VM
- Tell your Co workers you are getting chronic migraines so they understand
- Get to a neuro-otologist (or oto-neurologist) as soon as possible, ideally one who has experience with migraine related vertigo.
- Chill out and start trying the meds. For me, taking aspirin, ibuprofen or diclofenac gave temporary relief, but long term meds need specialist prescription.
- You can and will get better, but it can take a long time to āresetā the brain from chronic migraine or status migrainosus
- Do meditation, mindfulness and gentle exercise every day
See my āpizotifen diariesā thread on the site
I was really bad for 3 months, quite bad for another 6 months, and gradually returned to 99% recovered (I occasionally still get off days, but not really a problem).
Good luck!
Stay positive!
Yes, a cup of coffee is now a day trip to hell. I sometimes do vestibular rehabilitation exercises but I donāt think it works for me. What I think makes a difference is de-stressing exercises but it doesnāt last long. Iāll try to bear with it and hopefully itāll pay off ultimately.
Iām happy that you found some normalcy. I hope you find the missing 1% once and for all. I also get pretty good days that I feel 100% normalcy is just around the corner coming right up on its own all I need is to wait for it. But I just relapse and the cycle goes on and on. Thanks for these great tips.
I have always called mine ātrampoline walkingā too. I had it badly at first but it slowly wore off with meds. And I went to 7 doctors over 2 years before being correctly diagnosed. However i noticed years later it was mentioned on a report as a possibility when i went to the ER for the first time in Africa! The American doctors didnāt catch it til years later.
I call mine āintractable vertigoā when i talk about it to people who donāt understand. I find calling it āmigraine vertigoā or vestibular migraine just doesnāt capture the severity of the problem. My ENT wrote it that way in a letter and it has really helped people understand. And i donāt know the actual stats but most people (my doctor quoted me 80%) get better on meds and other protocols (hydration, exercise, good sleep, etc.) But very few have it go away 100%. I function at about 90% now but itās always there like.an annoying friend who never ever leaves you alone 
Maybe enemy?