# Help me please. MAV or not ? **URL:** https://mvertigo.org/t/help-me-please-mav-or-not/19400 **Category:** New here, let me introduce myself 🤝 **Created:** [May 28, 2020, 4:03pm UTC](https://mvertigo.org/t/help-me-please-mav-or-not/19400 "2020-05-28T16:03:14Z") **Posts on this page:** 1 **Showing post:** 2
### Author: ![turnitaround](https://mvertigo.org/user_avatar/mvertigo.org/turnitaround/32/4441_2.png) [@turnitaround](https://mvertigo.org/u/turnitaround) #### Post date: [May 28, 2020, 4:15pm UTC](https://mvertigo.org/t/help-me-please-mav-or-not/19400/2 "2020-05-28T16:15:01Z")
bienvenu Alex! We can’t diagnose here, but it would appear you have an obvious vestibular problem. This can take years to resolve. Something has happened to you, and you may never find out what, but these things definitely have a cause. > [@Alex266](#): > > I am currently being followed by a specialist who thinks it is a perilymphatic fistula but nothing sure. I told her about a vestibular migraine but she tells me that it is not possible because I don’t have migraines whereas we know that one can suffer from vestibular migraines without headaches. Yes, this is possible > [@Alex266](#): > > I also went through a feeling of derealization but I learned to live with it. ![image](https://mvertigo.org/uploads/default/original/2X/3/3f9843f33c744527d897fa7d6b5941ce7a8d684f.png) > **[Otologic Surgery](https://books.google.co.uk/books/about/Otologic_Surgery.html?id=PQ3hCgAAQBAJ&printsec=frontcover&source=kp_read_button&redir_esc=y#v=onepage&q=derealization&f=false)** > > Now in brilliant full color, Otologic Surgery, 4th Edition, by Drs. Derald Brackmann, Clough Shelton, and Moses A. Arriaga, offers comprehensive, step-by-step coverage of the full range of surgeries of the ear and skull base. Through crisp line... I also had this diagnosis (one of a few). What you can get after PLF is inner ear hydrops when it starts to properly heal. It’s a build up of pressure in the inner ear that is caused by the fluid imbalance that has built up during the leak and once the leak starts to stop. Even patients who have had PLF surgery can get this because the surgery can’t fix the residual fluid imbalances. This has identical symptoms to MAV. From your description I’d say this is possible For your reference, here is someone who also suffered from this: [Secondary Hydrops, PLF and my 3rd PLF Repair](https://mvertigo.org/t/secondary-hydrops-plf-and-my-3rd-plf-repair/15427) But how did you get that? Did you listen to a lot of loud music for a long time? Did you use inner ear headphones and pulled them out one day very abruptly? Have you had a head injury or car crash? Problems with your ears when landing in a plane? Do you remember any moment when an ear was particularly uncomfortable? There are few pain receptors in there, so it may be hard to tell. I did not feel any pain when I believe I got mine. > [@Alex266](#): > > As I told you before I am completely lost about the diagnosis. > > The problem is that I do not meet all the criteria for perilymphatic fistula. Mine was dismissed as migraine many times, but I knew I’d brought my situation on with trauma. Remember that it may no longer be PLF but the Secondary Hydrops you get during healing. It’s very hard to be sure of anything with these symptoms, but for it to be PLF you would have had to have had some trauma of some kind at some point. It might have been a long time before you got the worst symptoms of Secondary Hydrops (which for me has lasted years, not the weeks I had of imbalance almost immediately after the trauma). > [@Alex266](#): > > One evening when I can’t stand this feeling anymore and in desperation I start shaking my head very quickly from right to left on its horizontal axis (I know it’s completely stupid) as if to try to put things back in place inside my head. This manipulation instantly increased my symptoms by 30% and it took me about 3 months to get back to the previous state. I had a similar experience - I jumped up and down on a friends indoor trampoline during my illness and it set me back weeks! I would not perform any extreme movements if I were you and let your system reset itself. I was desperately ill for years but finally got (mostly) better. It can be done! Please note I never had surgery, I didn’t need it. My bad ear is still not fully right, but it’s soooo much better! Keep calm, stay strong, keep soldiering on and if you can please do not lie around, but try to walk somewhere nice everyday for as long as possible. Do not use walking aids unless it’s dangerous. NB The treatment for PLF is usually identical to MAV, because 90% of cases of PLF heal spontaneously (according to Hain). So whatever you have, the treatment is often the same: ![image](https://mvertigo.org/uploads/default/original/2X/c/ce1337644348c59f285eb78f55ce0fae456c1a3f.png) from: [Perilymph Fistula](https://www.dizziness-and-balance.com/disorders/unilat/fistula.html) Follow the diet guidance (the 6 C’s) and avoid recreational drugs and alcohol. I took 20mg of Amitriptyline. This is a great drug for this problem. You also need to expose your brain and retrain it as much as possible which will help reduce your symptoms. Keep us updated. Bon chance mon ami! --- _[View the full topic](https://mvertigo.org/t/help-me-please-mav-or-not/19400)._