bebe127 Posted January 31, 2013 Report Share Posted January 31, 2013 Anyone have this??? Ringing in the ears. I think I've had this for quite some time, although over the last three years it's gotten worse. I've read about it a bit and how one can have this because of bp. I'm wondering if it's the bp or if it can be a side effect from meds or what. It drives me crazy, especially at night when all is quiet, hence my intimate relationship with netflix on my nook! Any ideas?? Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 31, 2013 Report Share Posted January 31, 2013 I had a sudden onset Sept 2011. One of the less severe symptoms that I noticed during my first hospital visit was bilateral constant ear ringing. Over the last year and a half it has been my constant companion. When I am more symptomatic it increases in severity- both volume and additional pitches. (I've noted up to 4 different pitches.). Funny, I too find escape watching Netflix. When I am really tired and overly sensitive I listen to white noise for babies. Helps me relax.I discussed this with the physicians at Vanderbilt's research center and at Cleveland Clinic- none have had any insight as to the connection between Dysautonomia and tinnitus. I just ignore it because it is a symptom that is so small in the scheme of things. But no doubt it is connected. I've never had ear ringinglike this before. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted January 31, 2013 Author Report Share Posted January 31, 2013 Thanks KellyI have had my ears checked and nothing seems out of the ordinary. I also have experienced trouble hearing (my kids think I'm deaf) and at times have to resort to lip reading which can be kind of awkward depending on who I'm speaking with! My kids always think they are clever when they cover their lips while speaking to me. Oh, the joys of motherhood! Over the years, I've complained of this and no one can ever figure it out. Guess I just have to chalk it up to one more symptom that I can't control.I am now in the habit of watching Netflix at night until I can't keep my eyes open any longer and sometimes I fall asleep only to wake up and find that I'm laying on my nook I can't just lay there and go to sleep with all the crickets in my head because I end up just clenching and unclenching my jaws (this changes the pitch) to the tune of various songs and it keeps me awake!! I should look into a noise maker, for lack of a better term, to get to sleep at night, but that just might have to wait until the series I'm watching on Netflix is over Quote Link to comment Share on other sites More sharing options...
Altruism Posted January 31, 2013 Report Share Posted January 31, 2013 I have constant tinnitus with sudden onset Jan 2008. I have also bilateral hearing loss. Lucky me! Nothing really helps mine - I've tried maskers, white noise, music, hearing aids.. Bebe!!! Same thing!!! I cant just go to sleep, I have to exhaust myself or at least my eyes.. I always fall asleep with my laptop and I wake up with it over/under/beside me.. As if tinnitus alone is not bad enough, we now have POTS Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 31, 2013 Report Share Posted January 31, 2013 I developed tinnitus when I first became sick and it's been with me ever since. It's constant in my left ear and I sometimes get it in my right too. It gets louder when I have a cold. It can be distressing at night - sort of a constant reminder that things are not right with me. I agree though - not the worst symptom compared to the rest! I've had hearing loss since childhood, although mainly in the high frequencies, so it's not a huge problem - except for beeping fire alarms which would be nice to hear! I sometimes have problems hearing people when they speak, so I've relied on watching their lips too. Amazing how we adapt, isn't it? Have you been evaluated by an ENT for the hearing loss? What do they say? Quote Link to comment Share on other sites More sharing options...
badhbt Posted January 31, 2013 Report Share Posted January 31, 2013 Count me in. I have had it for years. I would have to agree that it is one of my least worries. I have it in both ears. I sleep with a loud fan...my husband hates it and swears it is making him go deaf Quote Link to comment Share on other sites More sharing options...
bebe127 Posted January 31, 2013 Author Report Share Posted January 31, 2013 Naomi,Yes, been to an ENT and like most of my other dr. appts....there is nothing, I'm perfectly fine! I agree too that it is the least of my complaints. Just wondering if anyone else deals with it, and now I know that yet again, I am not alone Good to know!! Quote Link to comment Share on other sites More sharing options...
tigerbomb Posted January 31, 2013 Report Share Posted January 31, 2013 This is a new symptom for me. Exciting!So far, it has happened a few times when I am extra-tachy, and went away when I lay down. I wouldn't be surprised if it was blood pressure related for me. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 31, 2013 Report Share Posted January 31, 2013 I have had it my whole life and didn't even realize it wasn't normal for everyone to have that noise in their ears. I finally asked when filling out the new patient questionnaire for my cardio what tinnitus is. She told me and I was like OHHHH! I have that all the time. It never stops. She was like, "ummm, that's not normal. " But I believe it is actually very normal for POTSies. Quote Link to comment Share on other sites More sharing options...
E246 Posted January 31, 2013 Report Share Posted January 31, 2013 Yes this started with the Pots. Both ears - cant be bothered to check it out as it seems the least of my worries but mu pots specialist regarded it as a part of pots. Seem to have some hearing loss too - slightly more worrying. Quote Link to comment Share on other sites More sharing options...
Altruism Posted January 31, 2013 Report Share Posted January 31, 2013 I think it's not POTS related for me. I have congenital large vestibular aqueduct LVAS in my left ear and sensorineural (unidentified cause) hearing loss in my right ear. I can't believe we are all so similar. I wish I could hug you all. Or had you as my family. Imagine we all lived together! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted January 31, 2013 Report Share Posted January 31, 2013 I used to hear just a heartbeat in my ears. Then many years ago I started hearing a hissing sound and was convinced it was the telephone line. I convinced the phone co that they heard it also. lolThey left and it was still there. ; ( I told my doc and he said it could be related to neuropathy. I have a lot going on with my POTS that we did not focus on that issue. Sometimes I hear both sounds. Sometimes they are louder than other times. When I'm retaining fluids they are the worst of all. Quote Link to comment Share on other sites More sharing options...
kitt Posted February 2, 2013 Report Share Posted February 2, 2013 This became new to me about a month ago. I wake up in the middle of the night and it sounds like a tea kettle whistling, or a far away train, except with a much higher pitch.Another early morning I thought it was lawn keepers blowing and mowing outside. Tried to plug my ears and was confused for a minute when it kept on and on...It's now intermittent, but chronic. I use meditation and mantras I learned many years ago to go back to sleep. Very irritating, but guess it's part of the big picture. Neurologic, and suspect it's stress related as well. Quote Link to comment Share on other sites More sharing options...
seattle chris Posted February 2, 2013 Report Share Posted February 2, 2013 I had tinnitus three years ago but it went away after a year or so. It was only a minor nuisance for me. Quote Link to comment Share on other sites More sharing options...
anna Posted February 2, 2013 Report Share Posted February 2, 2013 I can always remember having this problem from a very young age my children are the same. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 2, 2013 Report Share Posted February 2, 2013 Count me in. Mine began 15 years ago, prePOTS. I did all the ENT stuff, and my ears appear to be just fine. It is constant in my left ear, and a few years ago I noticed that my right ear might be ringing, too. The left is so loud I can't tell! I have learned to use a fan at night to drown out the noise. Otherwise, after this long having it, I kind of ignore it. It DOES get easier to ignore.For mine, it is not related to blood pressure. It is constant, whether standing for a TTT or sitting in my recliner with a low-normal b/p.I have found one thing that makes it worse...calcium. Anytime I take it, my ringing gets so much louder for a few days. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted February 2, 2013 Report Share Posted February 2, 2013 I started having tinnitis off and on about a year ago - now, it is steady and unrelenting - if I am flaring, it is very loud and sounds like a plague of locusts swirling all around me - when I am holding my own, it is just like "white noise" in the background - I can usually drown it out by turning on the TV, radio, or something like that - just figured it was all part of the progression of the dysautonomia...... Quote Link to comment Share on other sites More sharing options...
Libby Posted February 7, 2013 Report Share Posted February 7, 2013 I have it, too. It's constant but mostly a quiet, easily ignorable pitch. If my bp is in the toilet (or I'm pre-syncopal), it ramps up to a dull roar. I've had it for years and I'm pretty resigned to the idea that it's not going away anytime soon. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted February 7, 2013 Author Report Share Posted February 7, 2013 Thanks everyone for your responses, it's good to know that I'm not alone. Mine occurs constantly and consistantly. It is like E describes, an unrelenting plague of locusts swirling in my head. I wake with it every morning and go to sleep with it every night. Sometimes during the day I don't notice it, but that is rare. It also doesn't seem to matter how I'm feeling or what my bp and hr is; it's always there. It's so annoying. I've taken to reading lips much of the time, as it is hard for me to hear. I also have to put subtitles on the TV, if not, I miss half of what they are saying. If I am watching netflix and have earplugs in, I don't seem to have a problem. Like E and Libby, guess I'll just resign myself to the fact that it's here to stay, and just another symptom. Thanks again Quote Link to comment Share on other sites More sharing options...
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