RunningWild Posted January 19, 2012 Report Share Posted January 19, 2012 I know we have talked about Ear problems recently- but this is a huge problem for me right now.The midodrine im taking helps with most of the blackouts, but i still get a few random episodes.Lately I have been having a feeling of clogged up ears. This happens mostly when im up and active... and ALWAYS happens when im exercising. It feels like all the blood is rushing to my head and filling up my ears. I get very dizzy and disoriented, and have passed out while exercising. I don't know if this is related to the POTS at all, and I don't know what to make of it. I also get frequent ringing, buzzing, and just constant aches in my ears. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 19, 2012 Report Share Posted January 19, 2012 Huge issue for me since all my problems began. Been checked repeatedly and can get no answers. Have you been to an ENT? Quote Link to comment Share on other sites More sharing options...
RunningWild Posted January 19, 2012 Author Report Share Posted January 19, 2012 I never have been- but i wasn't totally sure if the issues were related at all so didn't know if there was a point.:/ That and the constant dismissals- im staying away from drs. lately. Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted January 19, 2012 Report Share Posted January 19, 2012 I to have the clogged ear problems. It some times feel like my ears are popping, or liquid in them, often pain. My hearing is affected at times and I get very disorinted. I find when my blood pressure is low it's worse. I've been sent to a ear nose and throught Doctor and been told there's nothing wrong. My primary doctor says it could be POTS related but unsure. Goes back to Doctors not knowing so it seems they tell me it's all in my head. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 19, 2012 Report Share Posted January 19, 2012 I have the ear thing too. Actually when I was pregnant and came off Klonopin too quickly, I developed what they thought was Meniers (sp?) because I had such bad vertigo, tested positive for it with the audial test, and for a month straight my ears felt full and had no sense of gravity the vertigo was so bad - I couldnt hear over the noise and ringing. Then they upped my IV fluids, and it started to go away. I then restarted Klonopin at a very low dose later in the pregnancy when I came off fluids, and the vertigo stayed away. But i can't sleep in a quiet room because of the ringing, I block it out with background noise, and my ears always feel "funky". My ENT was actually who first told me he thought I had dysautonomia and to look it up many years ago, and he can't find anything now. WEIRD! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 19, 2012 Report Share Posted January 19, 2012 Runningwild -could be a seperate issue- I would at least get checked out. Are you relating your ear problems to the midodrine?Claire- upping the IV fluids made the ear clogginess go away or the vertigo? You're the second person to relate IV fluids with ears - interesting. Quote Link to comment Share on other sites More sharing options...
RunningWild Posted January 19, 2012 Author Report Share Posted January 19, 2012 Naomi- I don't know why i mentioned the midodrine- other than it makes most of my potsy stuff go awaybut not the ear stuff. also- i was given tramadol for my migraines, and it makes the ear blocky feelings 100x worse. sigh. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 19, 2012 Report Share Posted January 19, 2012 Naomi - Yes, IV Saline worked wonders. The fluids helped me regain some osmotic balace and decreased the retention. My doctor agreed, and also agreed it was weird. I was also pregnant at the time, so my body was all out of whack. We should do a poll on the ear thing and see how many actually have issues. Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 20, 2012 Report Share Posted January 20, 2012 I have very loud tinnitus during a POTS (or now MCAD) episode, and sometimes (like today) it's ongoing. I've also had occasional severe vertigo for weeks at a time. I believe it is related to blood flow problems and yes, if I let myself get dehydrated, it is worse, and it's worse when I take migraine meds or alcoholic beverages. I suspect a lot of POTS (and MCAD) sufferers have problems with ear "fullness", dizziness, and ringing, although some people's ear problems may be unrelated as problems with the ears are relatively common. Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted January 20, 2012 Report Share Posted January 20, 2012 Hi RunningWild, I have these same symptoms everyone is describing as well, but I developed them about 12 years ago and have only had really pronounced POTS symptoms for about 2 1/2 years. (I've probably had mild POTS for about the past 15 years though.) In the past I had a lot of sinus issues, so I'd assumed my ear issues were related to that, but doctors never seemed to find fluid in my ears even though it's felt like I have fluid in there for more than a decade! Anyway, I don't know if it's a POTS-related issue or something pre-existing for me, but I do find it extremely interesting that so many people on this forum have the same symptom. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 20, 2012 Report Share Posted January 20, 2012 Mine is definently POTS related.... when my POTS is controlled, there are none and when I am bad, it is too. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 20, 2012 Report Share Posted January 20, 2012 Dizzyblonde - me too with the feeling of fluid (both ears to varying degrees) for over 10 years. It's crazy - they never see anything and inner ear testing doesn't point to anything obvious. Can you describe how it feels for you? I can hear and feel it - if I push on my ear I can feel this "fluid" move and hear a noise, like a suctiony noise. In the morning the insides of my ears will actually be wet/moist inside. I asked the last ENT whether it could be a CFS leak and he said, not unless there were holes in my ears (tympanic membrane? I assume). He insisted there was nothing wrong with my ears, definitely no fluid, and didn't think I had a vestibular disorder. It makes you feel like you're crazy or something. Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted January 20, 2012 Report Share Posted January 20, 2012 Dizzyblonde - me too with the feeling of fluid (both ears to varying degrees) for over 10 years. It's crazy - they never see anything and inner ear testing doesn't point to anything obvious. Can you describe how it feels for you? I can hear and feel it - if I push on my ear I can feel this "fluid" move and hear a noise, like a suctiony noise. In the morning the insides of my ears will actually be wet/moist inside. I asked the last ENT whether it could be a CFS leak and he said, not unless there were holes in my ears (tympanic membrane? I assume). He insisted there was nothing wrong with my ears, definitely no fluid, and didn't think I had a vestibular disorder. It makes you feel like you're crazy or something.Hi Naomi, Mine is exactly like you described!!!! I'm sorry you have it too, but it's gratifying to know I'm not the only one with this unexplained feeling! I know what you mean about feeling a bit crazy when a doctor tells you there's nothing there, yet you feel something there! It just feels exactly like I have water in my ears. It's worst when I'm lying down on my side because I can feel and hear the liquid moving around in my ear, just like when you have water in your ears after swimming; however, it's kind of a constant feeling of "fullness" in my ears even when I'm not lying down.I've had the same discussions with ENTs as well... my eardrum is apparently fine so there's no explanation they can give me. I've wondered about Meneire's (because I have chronic vertigo too) but my hearing seems okay and my ENTs have never diagnosed it. I've thought about going back and asking more pointedly if they could look at Meneire's but I'm kind of sick of doctors right now. Like you, the inside of my ears feels kind of moist too. Not to be gross, but I don't think it's ear wax because it seems way too watery for that.One doctor told me once that because I've had sinus surgery that perhaps a nerve was affected during this that has given me this sensation ever since, but seeing how many people on this forum have this same issue, I have to think there's some connection to dysautonomia going on. Anyway, I know you're not crazy, Naomi--maybe our ears our just a little crazy. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 20, 2012 Report Share Posted January 20, 2012 Oh, my ears are definitely crazy and driving me crazy! Yes too watery for wax- what the heck is coming out of our ears!? LOL. So glad you can relate - not wanting you to suffer either, but I admit it's better not to suffer alone. Quote Link to comment Share on other sites More sharing options...
lillybits Posted January 21, 2012 Report Share Posted January 21, 2012 i get weird hearing from time to time sometimes a ringing or or just a hearing disturbance from time to time Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 22, 2012 Report Share Posted January 22, 2012 I have had constant tinnitus in both ears since the sudden onset of symptoms last Sept. On really bad days I get two or three different pitches going. On good days the sound is less but never "gone."The ENT ruled out Menieres but said I have an electrochoclear abnormality and slight hearing loss in my right ear. Funny bc I am more symptomatic on my left side. I'm sure it is related to my Dysautonomia.Has anyone else had constant ear ringing for months that stopped? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 22, 2012 Report Share Posted January 22, 2012 Ivehad some weird ear stuff similar to what people are describing here. Quote Link to comment Share on other sites More sharing options...
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