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Old 01-14-2012, 08:46 PM   #1
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Question Perilymph fistula

Hey, first time on here! What a wonderful place to find info. I have a perilymph fistula, meaning any kind of loud noises or intruments even sometimes if I have a cold eating crunchy foods can make me very off balance. Was wondering about air travel, if anyone has this problem and how was their flying experience, did it effect their ears?? Thanks

 
Old 01-19-2012, 10:20 PM   #2
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Re: Perilymph fistula

Flying with an active PLF is high discouraged. There are special travel ear plugs that help regulate the pressure in your ear, those might help. Are you being seen by an ear specialist?

Note I am not a doctor, so I cannot say whether it is safe to fly with an active PLF.

 
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Old 01-23-2012, 03:58 PM   #3
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Re: Perilymph fistula

Hey Bindar, it looks like we have another fistula "friend". Mine hasn't fully gone away sadly. It seemed like yours was on the right track when we stopped talking back in December. I just got switched to Keppra today. Ever heard of it being used for a fistula and or SCDS or something similar?

Hi Shmalky! I'm sorry you are having such a crappy time! I can totally relate as this is my second time around the block with a fistula (1st surgery worked, 2nd surgery didn't). If you have any questions about what you are going through, feel free to ask!

Also, Bindar, what are those ear plugs called? I will probably be flying in July to Chicago and if this isn't fixed by then, I'd love to have them. If I already had the surgery, hopefully I will be okay... Then again, the doc is still clueless with what why the loud noises cause me so many issues (but the softer sounds aren't as bad anymore and I can drive again ).

 
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Old 01-26-2012, 12:01 PM   #4
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Re: Perilymph fistula

Unfortunately the surgery didnt work, and I am currently being treated for possible MAV. Keppra is an anticonvulsant, and this class of meds is common for MAV treatment, although I have not heard of Keppra being used specifically.

Im not sure if Im allowed to mention the brand, this forum is super strict about certain things. But I would type "air travel ear plugs" into a search engine.

 
Old 01-27-2012, 09:56 AM   #5
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Re: Perilymph fistula

After all that you aren't better now??? I thought the dizziness was all going away. Right now I'm finally getting some relief for the first time in 2 months . I don't know if the medicine is working or being 2 months out of surgery on the same ear is long enough for things to start working properly. But I can now drive and listen to music on my iPhone (I haven't tried the car speakers yet). I tried and was able to pretty much handle the opening to the WFU/FSU basketball game this week. But 50 people talking in a room that has an echo still gives me dizziness issues. And so does when I bounce my knee up and down (I do this without thinking, but now I know I'm doing it b/c I get dizzy -- kinda crazy). Eating still makes me a little dizzy as well. But at least it's progress for once. They did a test to see if I had a fistula in my left ear as well, but I'm guessing if I haven't heard results back all week then it's not that.

Maybe these things just take time. As annoying as that is to hear...

 
Old 01-27-2012, 02:04 PM   #6
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Re: Perilymph fistula

I am no better at all, life is still a nightmare lol.

Im thrilled that you are doing better, whether or not its the meds. I certainly wouldnt quit them just in case lol, give it at least 6 months. It must be nice to function semi-well again!!!!! Im jealous. I get dizzy when I bounce my knee up and down too.... I think this is a MAV problem more than an ear problem.

I hope you get even better! Please keep me updated my friend!

 
Old 01-29-2012, 08:24 PM   #7
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Re: Perilymph fistula

Thanks for responding to me. Do you know what caused your fistula?? My dr here in canada didn't recommend surgery if I could live with it. He has since passed away and I really wanted to ask him about flying?? I've been to another specialist here but they were clueless what was even wrong with my ear, Telling people that loud noises or moving your head the wrong way makes you dizzy, they think your crazy

 
Old 01-29-2012, 09:51 PM   #8
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Re: Perilymph fistula

Surgery proved I didnt have a fistula, I am currently being treated for MAV.

I wouldnt recommend flying, but I suppose its possible with the proper ear plugs. Can you find another otologist or neurotologist?

 
Old 01-31-2012, 12:08 AM   #9
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Re: Perilymph fistula

I flew with a fistula several times back in November/December. I finally got dx with the condition in late December (in both ears). I wore earplanes on all my flights and I felt perfectly fine. In fact, most of my dizziness came from the crowds/hustle-bustle of the airport.

I am a bit skeptical of my diagnosis, as I don't have vertigo, have history of migraine, and my neuro-otologist completely dismissed MAV, but I flew just fine with my supposed "perilymph fistula" with the earplanes. I had some valium and meclizine on me though just in case!

 
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Old 02-12-2012, 05:08 PM   #10
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Re: Perilymph fistula

I'm kicking this idea around myself after being Dx with Labs/VN. My reasoning is that I was weightlifting frequently last year, and when this first was really tough back in december it was constant light headeness, and when I went to the gym the symptoms would worsen (dizzy, nausea, like I was walking sideways feeling). I stopped going to the gym after a couple of efforts and just did nothign physical for a few weeks. I have been to lift last two weekends, and while the symptoms aren't showing AT the gym any more (which is good), I do feel fatigue and some lightheadedness for a few hours after a workout.

Now I know VN/labs can probably cause the same issues, and again there has been improvement since december, I can't help but think maybe this was PLF all along? (had NO hearing loss though, ENT confirmed). thoughts?

 
Old 03-19-2012, 05:14 PM   #11
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Re: Perilymph fistula

Quote:
Originally Posted by Shmalky View Post
Hey, first time on here! What a wonderful place to find info. I have a perilymph fistula, meaning any kind of loud noises or intruments even sometimes if I have a cold eating crunchy foods can make me very off balance. Was wondering about air travel, if anyone has this problem and how was their flying experience, did it effect their ears?? Thanks
I just had surgery for that in my left ear, i had 2 seals damaged from a loud concert. I know I cant fly now for a few months it can damage it again. but it's all about pressure it can make it worse for you but def get ear plugs if u fly

 
Old 08-07-2012, 07:20 AM   #12
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Re: Perilymph fistula

This is my first post. Has anyone ever heard of a PLF developing after prolonged use of earpieces at moderately high volume. Immediately after a 7 hour trip with "ear-buds" playing, I lost hearing in my left ear. Three hours later I was immobilized with vertigo. Neurotologist diagnosed viral labyrinthitis/neuritis. I'm no better now 2 months out than I was after one week - mild vertigo, mild headache, tinnitus, feeling of pressure in the affected ear (which remains totally deaf) and I feel generally crappy. The AM is the best but increasing intensity of symptoms and fatigue puts me down by afternoon. Any lifting or straining will aggravate the ear symptoms. I have no recent history of virus infection and have never had an ear infection. The sudden onset after trauma suggests damage, not infection. Is there a definitive test for PLF? I'd sure appreciate some suggestions from you folks that have experience in this area. Thanks!

 
Old 08-07-2012, 07:45 AM   #13
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Re: Perilymph fistula

Quote:
Originally Posted by Chipper1945 View Post
This is my first post. Has anyone ever heard of a PLF developing after prolonged use of earpieces at moderately high volume. Immediately after a 7 hour trip with "ear-buds" playing, I lost hearing in my left ear. Three hours later I was immobilized with vertigo. Neurotologist diagnosed viral labyrinthitis/neuritis. I'm no better now 2 months out than I was after one week - mild vertigo, mild headache, tinnitus, feeling of pressure in the affected ear (which remains totally deaf) and I feel generally crappy. The AM is the best but increasing intensity of symptoms and fatigue puts me down by afternoon. Any lifting or straining will aggravate the ear symptoms. I have no recent history of virus infection and have never had an ear infection. The sudden onset after trauma suggests damage, not infection. Is there a definitive test for PLF? I'd sure appreciate some suggestions from you folks that have experience in this area. Thanks!
I had PLF, but they did a 3hr test it's like a dehydration test to see if you have a leak in the seal in the inner ear...i had the surgery but i still have vertigo..my ear seems a bit better but my vertigo is still there. This was all do from a loud concert i went to. I'm actually going back to the neuro to see what he says he's suppose to be the best out there. Did they put u on any meds..I started taking clonozapam which is a genetic kind of Klonipin and that is the only stuff that makes me function throughout the day...without it i cant drive or do anything i would be in bed all day feeling like i was on a boat.

 
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Old 08-07-2012, 11:35 AM   #14
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Re: Perilymph fistula

Thanks for the reply, Short. The doctor gave me diazepam (Valium) but told me not to use it because it interferes with the brain learning how to cope with the damage. My big problem is convincing this neurotologist that I have a PLF and not viral labrynthitis. Does the 3 hour "dehydration" test you went through have a name?

 
Old 08-07-2012, 11:39 AM   #15
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Re: Perilymph fistula

Quote:
Originally Posted by short81771 View Post
I had PLF, but they did a 3hr test it's like a dehydration test to see if you have a leak in the seal in the inner ear...i had the surgery but i still have vertigo..my ear seems a bit better but my vertigo is still there. This was all do from a loud concert i went to. I'm actually going back to the neuro to see what he says he's suppose to be the best out there. Did they put u on any meds..I started taking clonozapam which is a genetic kind of Klonipin and that is the only stuff that makes me function throughout the day...without it i cant drive or do anything i would be in bed all day feeling like i was on a boat.

Thanks for the reply, Short. The doctor gave me diazepam (Valium) but told me not to use it very much because it interferes with my brain learning how to cope with the damage. My big problem is convincing this neurotologist that I have a PLF and not viral labrynthitis or viral neuritis. Does the 3 hour "dehydration" test you went through have a name?

 
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