Tinnitus

[lalalisa]

Hello Friends,

In the past I've experienced tinnitus (ear ringing). It usually comes and goes quickly and is fairly mild.

Lately the ringing is much more intense at times and I end up losing hearing in that ear for a matter of seconds and then it comes right back.

Normally I just acknowlege my symptoms as POTS and don't bring them back up to my Dr. Do you all agree with this approach? At what point do we call the Dr/nurse and let them know that a certain symptom is back or is more intense?

Thanks again for your advice,

Lisa

[briarrose]

Personally, dehydration and a low hematocrit (blood count) usually cause those symptoms for me. You might want to check those things out.

[yogini]

Lisa, I can totally relate to you. Most of my POTS symptoms have gotten a lot better over time, but the ringing in the ears seems to have gotten worse. I had it really bad last year and then it went away and now it is back worse than ever. It's the worst at night when I am lying in bed. For me it isn't related to my other symptoms - even on days when my HR and BP are fine I get the ringing. It really drives me crazy and I think it's part of the reason why I don't sleep well. I sometimes feel like I lose my hearing for a few secs too. I have talked about it w/ my doctors and they've told me not to worry. But it wouldn't hurt to mention it to your doc.

Have you seen an ENT? I was misdiagnosed with a balance disorder last year and went thru lots of ear tests. I know my ears/hearing are OK so I just live with the ringing. It's probably POTS related for you too, but you may want to get your ears checked out just for peace of mind.

[mindylee1]

Lisa,

I have the same thing. The ringing only in one side (left) loss of hearing, and no depth perception on my left side. I constantly run into things (ie walls..) on the left side. Well I have a new doctor - Otoneurologist - Dizzy doctor (Dr. Neil Cherian) at the Cleveland Clinic--- he is absolutely amazing!!! It turns out that many many many pots patients have problems with their C1 disc in their neck which causes these problems. Dr. Cherian works with a PT Kay Neidermeier ( who works with pots patients) They are working on the relationship of the C1 disc to some of our symptoms. My C1 is rotated to the right almost 90degrees. They are not sure why. This has caused other disc problems as well. I saw her for the first time on Monday and spent almost 2 hours with her. I have to go every month or 2times a month for therapy, which will be difficult because I live almost 3 hours away. But they really feel that it is in our best intrest to go through the therapy there, due to the fact that they have tried to send me elsewhere and nobody seems to understand our bodies like they do.

Don't ignore your symptoms...anytime someting new happens pay close attention to it. I am 27 and have figured what some never figure out in a lifetime and that is "The Doctors work for YOU." You know your body better than anyone, and especially with all of the time we have on our hands, we learn to pay closer attention to what is happening daily to us. Hope this helps you a bit. Let me know if you have any questions about I can go into more detail for you.

Best of luck

Mindy

[lalalisa]

Briarrose, Rita, and Mindy,

Thanks for your advice. It's so great to know that I'm not alone with this and that it is commonly a POTS symptom.

I'm going to go ahead and take notes as to when it happens, what my bp is, where I'm at when this happens, etc. And then talk with my Dr.

Thanks for encouraging me to talk with my Dr. Mindy, it sounds like you've found some really great dr's!

Briarrose - I'm in the process of trying to figure out if I have low blood volume. Unfortunately my PCP doesn't know how to check for this and I'm in the process of trying to get him to send me to a specialist. My PCP just checked my blood with a normal blood test and said to me "everything is fine" - without checking specific red blood cell counts, etc.

Thanks again,

Lisa

[briarrose]

Lisa

It's the same frustration that we all go through and this week has been a perfect example of that. I was admitted to the hospital for 2 days this week and before I left I asked for a copy of all my tests. The doctors told me that everything was ok and that they wanted me to have some follow up but nothing to worry about and the day that they discharged me they mentioned a blood clot in my liver that they neglected to tell me about earlier. They also only gave me labs from the first day that I was there and not the second day. Well I didn't know until I was reading through the tests that there were multiple things wrong on my radiology report, my gallbladder, liver, ovary, etc. and that the radiologist recommended that I follow up with another CT or MRI with contrast which I normally can't take because of allergies. My EKG also showed mulitple new things, including a right bundle branch block that I never had before. So that's the doctor's idea of everything is fine.

Also I know that I only gave you 2 examples of things that I know exacerbates ringing in the ears for me, there are actually several other things that can do that I just haven't been writing much this week.

It is something you should have checked out. You don't need any fancy tests to know that you are hypovolemic, there are old fashioned symptoms of that. If I was you, I would immediately get your medial records and tests that you have already had done, just for your own piece of mind. One doctor's interpretation isn't always another ones.

Steph

[Sunfish]

lisa -

just wanted to let you know that you may be fighting an uphill battle with trying to get the blood volume test....not that it can't be done, but it requires being in a lab that is set up for such & there just aren't many of them. there's no plain blood test that is a test for it b/c while different components of the blood mean different things, some of which can be related to volume, they can mean a host of other things as well. i recently had the blood volume testing done at vanderbilt by something called the "daxor method"; it consisted of my having to be motionless (laying down) for a period of time while i was injected with a very small concentration of a radioactive substance that would distribute itself evenly in my blood. they took blood before & after the injection and in this way are able to measure the volume (based upon the concentration of the radioactive substance after it has had time to evenly distribute). a doctor actually had to administer the test. good luck!

:-)melissa

[Shiner Kitty]

Hi Lisa,

I've had problems with Tinnitus for years (ringing sound, airplane like sounds, and a lot of other noises). It developed a few years after I got full-blown POTS. Mine used to be severe and constant in both ears, and I had some hearing loss. It wasn't complete hearing loss but it was bad and long-lasting. I was afraid I was going deaf. I've also had problems with severe hypersensitivity to noise. I never knew exactly what caused it, and my doctors never evaluated it. I was told it could be caused by my migraines or TMJ, but I think it is part of the Dysautonomia. I still get it sometimes. Sometimes now it affects only one ear. You might want to mention it to your doctor, though, since yours is more intense now. I mostly just wanted to reassure you that it can get better, and I hope yours will soon.

Take care,

Lisa