Help Me Figure This Out...?

[HopeSprings]

I don't know if anyone can help me on this one. I saw a neuro-otologist to see about my dizziness/balance issues. He thinks I may have a peri-lymph fistula -- a tear near the inner ear which allows fluid to seep ...into the inner ear? From what I have read it's a pretty controversial diagnosis with no real good test to confirm it. I have previously been diagnosed with "borderline meniere's" and another Dr. called it "hydrops." This Dr. said I do not have Meniere's. It's all the same premise having to do with too much fluid in the inner ear. I don't really get it -- excuse my poor explanation. Anyway this new Dr. wants to do a test where they give me a diuretic -- which reduces fluid in the inner ear and then do hearing/inner ear tests at 1 hour intervals over the the course of three hours. Somehow this can help with diagnosis. When I told him about the POTS he said maybe we shouldn't do the diuretic, but he can use Gylcerin (Glycerol) instead. Glycerol he said doesn't dehydrate the whole body, but focuses more on the inner ear. Then I read the possible side of effects of Glycerin -- nausea, dizziness, headache -- uhhh, no thanks? Plus it says Glycerol is a derivitive of alcohol? I can't even take a sip of alcohol without becoming symptomatic. But I don't know if it's "alcohol" in that sense. However, the diuretic "Lasix" can have a slew of side effects as well. So I don't know what to do. Do I go forward with the test and which do I take ...the diuretic or the Glycerin? I had a blood volume test done and it did NOT show low blood volume, so is it a big deal for me to lose water? -- I know this is a theory with POTS -- but is it JUST a theory? I felt so confused after I left his office and feel so hopeless. I feel like I just keep running into brick walls. I would appreciate any input.

Thanks.

[juliegee]

I could be wrong , but my guess is that the doc would be putting the glycerol in your ear.... It helps to absorb extra fluid. Did he actually say he wanted you to ingest it? I can't imagine HOW that would reduce fluid in your inner ear

If your blood volume studies indicate that you are not hypovolemic, it would probably be OK to do the diuretic, but why risk it when the glycerol sounds like it would do the same thing?

Best of Luck-

Julie

[Lovebug]

Is this test absolutely necessary? In other words, does the doc need the diagnosis in order to offer you treatment? If not, why can't you try treatment to see if it works? Either way, I would absolutely avoid the diuretic b/c (even though you aren't hypovolemic) taking a diuretic can make you hypovolemic and also deplete your potassium. With our condition, we are extremely sensitive in ANY shift of fluid which you would likely experience if taking Lasix. Good luck to you and I hope you get what you need out of this!

[HopeSprings]

Yes, the glycerol would be ingested. I don't know exactly HOW it works, but I guess it's similar to a diuretic -- except according to him it doesn't work systemically, just mostly affects the inner ear. This is hard to believe. The test (in his opinion) can help confirm this inner ear fluid problem. I have also read the test is done to help diagnose Meniere's. The teatment for this condition would be either a diuretic (which is not a viable option for me) or there is a possible surgery. The surgery is the thing I might consider.

[sue1234]

I can't help you out on your decision, but I'm definitely interested in what you find out. I have had an ear thing going on for about 15 years. It's kinda like meniere's, but not quite. Don't really know what it is. I have had ringing in one ear for that long, and my eyes seem to have an ever so fine tremor, probably related to the inner ear thing. I have only gone to an ENT a couple of times early on, had a few of the usual tests and MRI, and they said everything showed up okay. I don't think it is, but I could function, so ignored it. Well, actually, I quit driving because of my eyes, so I don't know if that is related to my ear, but pretty sure. Maybe I should have seen an ear specialist years ago?!? I would be curious what all your symptoms are.

[sue1234]

You know, I just read my first article on it, and it kind of describes me! It mentions, besides the usual ear-effect issues such as vertigo, etc., it said it can get worse upon exertion and activity. I have that happen when I walk for my whatever I can walk that day. I walk until I seem lightheaded and then sit. When I sit, I seem so dizzy and have to give it time to go away. I always assumed it was from the POTS(which it very well could be), but now I can see where it could be my ear. I have always noticed that the longer I walk, the more "distorted" my scenery gets. I've always thought of it like my eyes can't keep up with the scenery. It's kind of weird, but I've just lived with it. But, after reading this, I think I am going to have this checked out for sure!

[juliegee]

Yes, the glycerol would be ingested. I don't know exactly HOW it works, but I guess it's similar to a diuretic -- except according to him it doesn't work systemically, just mostly affects the inner ear. This is hard to believe. The test (in his opinion) can help confirm this inner ear fluid problem. I have also read the test is done to help diagnose Meniere's. The teatment for this condition would be either a diuretic (which is not a viable option for me) or there is a possible surgery. The surgery is the thing I might consider.

Whoah- that is a tough decision. I'd still go for the glycerol over the dieuretic, less of a chance of setting off potsie symptoms. I'd also like to hear more about your symptoms. I also feel like I have tons of fluid in my inner ear. I can't swim & am fearful of flying. Nothing helps. Keep us posted on what you learn.

I still like my method better- pouring it in your ear

Julie

[sue1234]

Julie, when you mentioned flying, I thought of something related to my ear "issue". I live in south Louisiana, where the elevation is all of 60 feet. When I had to drive up to Dallas to a useless doctor's appointment, we had to drive through some very lame hills. I could feel my ears get full, and when that happens, I feel more off balance. I guess I had better not go anywhere except maybe New Orleans, as they are below sea level.

I feel like I have fluid in my one ear all the time, too. Like I mentioned, I just lived with it. Wonder if the body could sense too much fluid in ear, and make the body try and lose fluid????----> hypovolemia?! I'll have to look back, I think I actually did run into some research on this and posted it here.

[HopeSprings]

Julie-- I like your method better too!

Sue-- Yes, visual symptoms are a HUGE part of my problem. My vision tests fine, but I feel like I can't see straight -- like things are hazy. I also have ear symptoms --tinnitus and clogged feelings, some hearing loss. And like you the more cloggy my ear feels, the more off balance I feel. Airplane rides, driving through hills, mountains all makes it worse. I am also worse when I am in any situation with lots of visual stimuli -- movies, malls, parties, museums etc. It's like a constant spacey, floaty, sorta drunk feeling in my head. It is my worst symptom. It also causes me cognitive problems. I have been confused too as to how much of this sensation is caused by POTS. I do feel somewhat better when I lay down -- so then I think is it because of blood flow to the brain -- POTS? I don't know -- I think for me it may be a combination of both. I do feel if I can solve the ear problem that it may be half the battle. I also wonder if inner ear problems can contribute to POTS (I have said it here many times). There are articles that talk about the relationship between the vestibular system and blood pressure/heart rate control. So that's all I know. I am still on the fence about the test. I am so ridiculously sensitive to anything I put in my body -- I am scared.

[cmruls]

I used to have 'stuffy' ears all the time. I felt like I could never 'pop' them and they felt full of fluid. I did two things that really helped. I used the Netti Pot, actually the netti bottle rinse, and after a few days my nose and ears were much clearer. I don't know it it was chronic allergens, allergies, or what but they felt better. The other was after I started treatment for my dysautonomia with coreg and amitriptyline at about 2 months all of a sudden my ears were open after many years of ear fullness.

I whould try the netti pot from drug store or walmart.

[issie]

I have the same feelings with visual stimuli - I figured out that I don't get as car sick, if I ride at night. My eyes have less to focus on and it doesn't stimulate the autonomic system and cause the naseau, anxiety feeelings, pots symptoms, hot flashes etc. All POTS related. I'm very sensitive to altitude changes even the slightest rise will cause my ears to stop up and I can hardly clear them. I think part of it may be not moving around as much with travel - less blood flow - less oxygen etc. But, the visual fogginess - never know when that will hit. At times, I can barely walk because it throws my balance off - I'll feel real unsteady. I'm also super, super sensitive to anything I ingest. Be it meds, foods, vitamins, etc. I think I react to everything. I think the Mast Cell reaction is to blame for this. I noticed when I went off my diet and ate some really yummy bad for me foods - hot flashes, sweats, anger, naseau, head aches - all to be blamed on the food. If we could figure out what and just stay away from it - we might do better. I've found that even a small amount of MSG will do all these things. My hubby cooked some meat and used a spice that had - and other spices - come to find out that usually means MSG. It messed me up for days.

[nmorgen]

Just wondering if you have asked about steroids injected into your ears? It's also used to regulate fluid. My grandmother had this done last week.

I also have visual disturbances. I have utricle damage which I thought was the cause of my eye problems, but I am now thinking that I might have Vertical Heterophoria. I'll probably have to wait until I move back to the US to find out, but it definitely fits a lot of my symptoms.

Good luck on whatever you decide.