Inner ear and POTS

[yogini]

I am a new poster to this message board. It's so nice to see that there are other people going through the same thing. I probably should have posted months ago. Has anyone with POTS ever been diagnosed or misdiagnosed with an inner ear condition? I came down with POTS in mid-Feb 2004.

After a few months of fumbling around with various Drs., my situation seemed to be mostly under control with florinef and atenolol. In May, a doctor suggested that I try reducing the florinef. About two weeks later, I started experiencing severe dizziness symptoms which felt different than my original symptoms. I didn't have any spinning sensation. but felt like I or the room was moving up and down when walking and standing (sometimes when sitting). My cardiologist said it couldn't be related to the POTS because my blood pressure and heart rate were under control.

I went to an ENT, who gave me an ENG, posturography and rotary chair test. The first test showed a possible ear problem, but the 2nd two test came back normal. I have been going to vestibular rehab for nearly 3 months and it seemed to help and greatly reduce my dizziness. During this time, I also increased my florinef back to .2 mg. I went to see a neurologist in late July who specializes in treating pots. She told me I should try to go off all of my medicines gradually. Again, two weeks after reducing the florinef to .1 mg, I started experincing the same up and down dizziness all over again. My ENT says that it likely isn't an ear problem, because ear problems don't worsen all of a sudden. But he doesn't know for sure. And my neurologist who told me to reduce the medicine isn't returning my call. I have gotten so fed up with all this that I am going to the Mayo Clinic in Rochester in two weeks. But I would love to hear from anyone who has any thoughts on this. Thanks

[justme]

It's probably not your ears. My wife went through the same testing recently to eliminate that as a cause. She came up with a severe ear infection following the testing. The tests that they could do came back normal. I'm guessing it is the POTS. My wife is also at .2 florinef and it seems to help.

[ethansmom]

Welcome to the board! I can totally relate to what you are going through, because I was misdiagnosed with an inner ear disorder called Meniere's disease, before receiving a correct diagnosis of POTS. Just for the record, I also went to Mayo Clinic and they were VERY complete with their testing, which concluded that my inner ear was functioning normally and the lightheaded feelings were caused by the dysautonomia.

I think that many doctors don't explain the concrete difference between dizziness and the lightheaded, off-balance feelings that you describe. True dizziness would be a spinning sensation, or vertigo- which would be more indicative of an inner ear problem. Feeling like you are tilting, falling, or having balance problems along with lightheadedness is frequently what we experience here with POTS, NCS, etc... Once I figured that out and made it clear to the dr, it was easier to narrow it down. But before that, after many tests that were inconclusive, I was placed on a diuretic and low sodium diet, and also given the inner ear exercises along with physical therapy. Once I found that I had POTS, it was clear why I had been feeling so bad, since diuretics dehydrate you, and of course staying away from salt wasn't helping- I was bedridden and getting horrible palpitations and tachycardia. I felt much better once I started on Pro-Amatine, Florinef, and a beta blocker at the right dosage- and INCREASED my salt and fluids. It never ceases to amaze me that the doctors can be so dead wrong that it can put a patient in a bedridden state...I don't trust any of them anymore I think you will find that Mayo is a great place because they are so advanced, and everything is organized and efficient. I wish you the best!!

[ginger]

Hi-- I'm a new one to POTS and this forum. See my post today "ginger" under General Discussion. One of my questions was also about ear pain. My general practitioner checked my ears for infection and pressure and couldn't find anything. I'm still trying to get an answer from someone (neurologist?, cardiologist?) if the ear pain could be from the POTS. Or maybe it's part of a bigger autonomic neuropathy picture.

Do you get the ear pain when you are feeling especially bad with other POTS symptoms? I do.

Best wishes and I'll be sure to post if I can get an answer.

Ginger in Central Illinois

[Jersey Girl]

I also have pain that comes and goes in my left ear. I also had an abnormal

ENG but normal rotary chair test as well. I think that whatever caused this condition to develop ( most likely a virus) also affected other nerves as well. I am just getting over a cold that backed up a little into my ear and I became even more dizzier than usual. I don't know why the ENG and rotary chair test are prescribed before the tilt table test when at least I was so vociferous in sayng that most of my symptoms were definitely related to being upright. Good luck at Mayo.

[yogini]

Thanks to all of you for your replies. Ginger, it probably wouldn't hurt to see both a cardiologist and a neurologist. But neither may be able to answer the question unless they have a great deal of experience treating POTS. During the past 7 months, I have been to 4 neurologists in the NYC area, two of which supposedly specialize in treating POTS. But with the exception of one of these doctors (who unfortunately won't even return my call), none of them seemed to have much of a clue about POTS. We probably all know more from reading on the internet than seeing some of these Drs. (BTW, I have had mild pain in the ears, but a lot of pressure and ringing. I think it happens when my other POTS symptoms are happening, but I am not really sure.)

It is frustrating, because all of my doctors new I had the POTS, but diagnosed me with the ear condition anyway. My cardiologist told me that the dizziness in May (occuring 4 months after my POTS diagnosis) could not be related to my POTS, because my blood pressure and heart rate were under control. I think this is totally wrong. Even though my blood pressure and pulse are decent for the most part, right now I am experiencing symptoms of POTS other than the ringing in the ears and the "up and down" dizziness. My hands and legs have been turning bright red, I have numbness, occasionally very rapid heart rate, and severe heat and cold intolerance. I barely had these symptoms on the higher dose of florinef. And I have tried reducing my florinef twice and th symptoms occured both times. I would probably feel better if I just increased it again, but I am going to wait until after my appointment at the Mayo Clinic, which is in less than 2 weeks! I am tired of guessing and trying to figure out my own treatment.

[morgan617]

i have actually been definitively diagnosed with meneires, and there is a big difference in the dizziness that comes with oi and the vertigo that comes from meneires i guess if you really do have both, it's pretty easy to tell apart. the downfall with this is, however, i can't do the usual meds for pots as it exacerbates my meneires. what a conundrum. but such is life i guess. morgan

[ginger]

Interesting that others have ear symptoms. I failed to mention that it's not only pain, but also ringing/buzzing, especially when I first get up in the morning. RGT, yes, I have both neurologists and cardiologist. Wasn't very clear in my reply--POTS at it again Anyway, none of them can figure out why the ears, too. Even my neurologist at Cleveland was dumbfounded by the ear pain. Considering ENT next.

[yogini]

Also, I hear this horrible crackling sound, as if someone is crumpling paper in my ear. I notice these noises the most in the am and at night. (During the day I think they are drowned out by NYC noise.)

[morgan617]

my dentist said that people who are chronically ill tend to clench at night. there's this complicated thing that the molars do when they clench that affects the nerves and therefore causes ear pain, jaw pain, headaches, and toothache. i thought i needed to get a tooth pulled and it didn't even have a cavity. she made me a little device for my front teeth that i wear at night. it doesn't allow my molars to bite. it's called an NTI and it has really helped. the only downfall is your mouth gets really dry. but it has really helped my ear pain a lot. my son uses it for his migraines and has noticed a difference too. i'm sure it's not for everyone. it cost 100 dollars, which considering how much i've paid all the doctors i've seen is chicken feed. so it was really worth it to me as my ear has been better pain wise. i always felt like i was getting an ear infection. it doesn't help my menneires at all, but i didn't expect it to. just thought i'd throw this out there. it was just fda approved to help with migraines, so there must be something to it. morgan

[ethansmom]

rqt-

I just wanted to add that your blood pressure and heart rate may *seem* normal to your doctor, but that does not mean that you are "recovered" by any means. My BP and HR are ALWAYS fine- I could pass a physical with flying colors, but it doesn't mean anything in terms of how I feel or where I am with the POTS. YOu are right about that, shameful that a doc who claims to know a lot about POTS would day that. I really hope that your visit at Mayo gives you some answers, and I wish you the best!!

[justin]

interesting about the dental thing. i sometimes do notice myself clenching my jaw a lot...anyway, i have had ear pain, but only recently. like over the last couple of months. before that i can't recall it ever being a significant problem.

i have also noticed what tends to make my ear pain (As well as my neck pain) worse. and that is cold. cold winds in particular. after a few minutes exposed to a cold wind, bingo...bad pain in my ears and my neck.

[yogini]

Thanks, Jessica. I wasn't sure it was possible to experience POTS symptoms while my BP and heart rate were in normal range. And here I was trying to increase my blood pressure further because I thought that's what the problem was.

[ethansmom]

Well, meds like Pro-Amatine or Florinef, in addition to keeping up fluids and salt intake, should help your symptoms simultaneously to raising your BP from an normal level. My BP without meds runs about 120/70- totally normal. I take the meds because the blood volume is increased, as well as the vasonconstrictor helps push some of that blood back upwards where it belongs. Consequently, my BP with meds is about 130/80- which to a doc, might seem a little high and I guess they might wonder how I could feel lightheaded, etc...

[jim]

Mayo is a great place- the autonomic neurologists there finally diagnosed my POTS after 2 years of searching for a doctor who would believe that I really had something going on. Funny thing is that the only local doc who believed me was my ENT. I had occasions when I would be walking, and suddenly the world would seem to spin in one direction. I was referred to the ENT for the dizziness and occasional ringing in my ears. He did some weird test where they ran hot and then cold water in my ears and monitored eye motion. Never felt so dizzy in my life. Anyway, the results indicated some kind of massive neurological response to perceived motion. This test was repeated at Mayo, with totally different results. My suspicion is that my dizziness was caused by both changes in blood pressure and damage to the nerves of the vestibular system (the system that lets your brain know it's position with the rest of the world). As my POTS began to improve, so did these symptoms. Good luck at Mayo!!

[jim]

One more thing. Probably a remote possibility, but changes in dosages of steroids can cause some weird symptoms.