I am glad to find this forum. I did a search on Perilymph Fistula and I believe some people here suspected they had it. I was diagnosed Meniere’s, but am increasingly suspecting a fistula.
Allow me to describe what happened. Prior to onset of symptoms I NEVER had any ear problems. So, I was traveling in Asia on Xmas vacation late December 2013 and developed some eustachian tube blockage in right ear, probably from a combination of cold+allergies+lot of smoking (normally don’t smoke much). At the time I didn’t know what it was but had a bit of tinnitus and muffled hearing. Didn’t think too much of it. After the flight back to California, I was ok until I got home and went to bed. Then all of a sudden shrieking tinnitus in the ear with crazy spinning vertigo woke me up. The next 3 weeks were bad, low-tones hearing loss, tinnitus, couple of vertigo attacks with dizziness in between, ear fullness/pressure, general fatigue. Diagnosed Meniere’s. Did a course of steroids. The next 6 weeks were a bit better, hearing got better with no vertigo, just a bit of dizziness & tinnitus. I went to the gym during that time and had no issues.
I was told Meniere’s has nothing to do with air pressure, cleared to fly, so I went on a flight, for only 2 days, after the flight back realized my eustachian tube cannot pop properly. good ear popped like normal in a couple minutes, bad ear keeps making popping sounds for several hours but did not clear. I finally realized it was eustachian tube dysfunction (ETD), and that I had it blocked the entire prior 10 weeks!! Tried valsalva maneuver several times over the next couple days, good ear has air flow but bad ear completely blocked. One time air actually seemed like it went through the bad ear and made me very dizzy for a few seconds so I stopped valsalva altogether. Over the next 2 weeks tinnitus got worse, and had another vertigo attack, back with the low-tones hearing loss. Tried to work out and lifting made me dizzy.
I then took 5 days of sudafed and things improved a good amount. Hearing came back, tinnitus reduced. Not sure if sudafed worked or just general fluctuation. I went off sudafed and symptoms got a bit worse the last couple of days. I might go back on sudafed.
I am suspecting perilymph fistula (PLF) because:
- Flying seems to cause problems for me, maybe even started the whole thing. I heard flying with ETD can cause it.
- Valsalva seems to make me dizzy, when it does go through the eustachian tube.
- Lifting weights made me dizzy sometimes (although not all the time, which is weird).
- Eustachian tube obviously blocked or partially blocked the entire time, which has more to do with PLF than Meniere’s.
- Eating salt, which is supposed to make Meniere’s worse, has no effect on me.
- Every once in a while, I almost feel like there’s a tiny bit of fluid in my ear. Doc said no fluid, so I might be imagining things.
- Seems like the sleeping or horizontal position is affecting me (my worst vertigo attacks were always when sleeping or just waking up), which usually means air pressure I heard.
My questions:
- What are symptoms of PLF? What’s the initial onset, and how does it fluctuate as time goes on by weeks or months?
- How can you diagnose it without exploratory surgery, especially to distinguish vs. Meniere’s?
- Can you fly with PLF, will air pressure make it permanently worse, ie make the tear bigger?
- Can it fully heal by itself, ie can you make a full recovery? Have you heard of such cases?
- For those of you with PLF, do you usually have permanent issues and symptoms? What’s the prognosis of this long term?
- Is surgery very risky? I heard you are not supposed to move for weeks afterwards? And I heard the surgery does absolutely nothing for hearing loss and tinnitus, only helps vertigo?
- Can you work out? Lift weights?
- Do you usually have worst symptoms after waking up / in the morning?
Thanks so much!