Ears!

[HopeSprings]

I'm still trying to sort this out. Are your ears a major problem for you? Mine are. They always feel cloggy, lots of pressure and congestion, my left ear rings 24/7. The Dr. never sees anything, but they always feel stuffy. I can't figure out if this is a seperate issue OR if the ear problem is somehow part of dysautonomia. I figure if a lot of us have ear problems, it's probably related and if I get no response it's not. I keep wondering too if my dizzy feeling is ear related and not lack of brain blood flow. When my ears feel clear (rarely) my head definitely feels better and my eyes focus better. But how can they fix something they can't see?

[lieze]

You may have water on your ear or a clogged eustachian tube.

I'm not sure it's related to the dysautonomia.

My ears are this way with pressure they only ring occasionally.

One time I got a funny feeling in my ear this was years ago and the little bones in my ear

started hammering away like they were playing a tune. It was so loud my husband heard it.

That was a once in a lifetime.

It's never happened again.

I had sinus issues even back then so who knows?

It was kind of like a spasm of the ear drum.

[potsyturvy]

I have this happen a lot. I always get vertigo when my ears are stuffy and I used to just attribute it to allergies. Now I think it is partly related to POTS because it has gotten a little better since I started taking florinef and bisoprolol. My doctors always tell me my ears look perfect when they feel super stuffed and clogged up! It's crazy!

[icesktr189]

I have this but have severe allergies that started when I was 7 month pregnant. However, I have tons of other traditional allergy symptoms now. I never knew how bad it could make you feel when you are plugged up in your head and ears. Try flonase and some time of anithistamine. That should let you know it its true allergies. When mine are bad, I have severe vertigo and feel so spaced out and drugged up.

[IDreamInColor]

I know exactly what you mean, my right ear feels cloggy all the time, I've been to an ENT and they never see a problem. It just feels like it needs to pop and can't. I also hear tiny bubbles popping in my right ear. And in the last couple days my hearing almost sounds muffled.

[Annaliese]

I have constant tinnitus and it feels like my ears are under water. It started when the dys did.

[gertie]

Was the Dr you saw an ENT? Your symptoms could be Meniere's. Do you have vertigo attacks? With Meniere's

it's fluid in the inner ear & I don't think they can see that. Mine started with constant ringing 24/7 & has progressed to hearing

loss. Some people say antihistamines help the pressure. You might want to check out meniere's.org forums for more info.

[HopeSprings]

Alicia - I PM'd you about Menieres. I've never had actual spinning vertigo. The Dr. originally thought Menieres, then changed her mind. She also thought Eustacian tube dysfunction, so we tried tubes in my ears, but that made things worse. I've been tested for allergies time and again - I don't have any. Another Dr. said it was Hydrops, which is similar to Menieres. More of the same run around. I'm trying to think what specifically with Dysautonomia could affect the ears. More blood flow issues? If Florinef helped POTSY Turvey then maybe. It's a frustrating symptom - when your ears feel messed up, you feel messed up.

[Dizzysillyak]

I used to have this all the time and would use hydrogen peroxide to clear it up .. My DD doctor taught me how to do this to her years ago. Just lay down on your side and use a dropper to insert peroxide. Let it stay in until the bubbling stops. Repeat if needed. I always found that my right ear was worse than my left. I just happen to have an old root canal over there so maybe it's connected.

This has cleared dramatically since addressing my allergies. Sad to say that I was very allergic to my dog and since he passed this has cleared significantly. He had bad allergies and was so smelly that I had to bath him at least once a week in Dawn dish soap. All dog shampoos just made the smell worse. I modified his diet and it cleared up his coat and skin but his smell continued. Looking back, I think he had a fungal infection, possibly candida ..

you know, it's always something with us ... what a pain this is ... hope you can get some relief from this ... tc ... d

[gertie]

Naomi, I think, I read in a discussion on the meniere's forum that some people with Meniere's don't have vertigo.

I have had symptoms you describe without the vertigo hopefully that doesn't start for you. A lot of my symptoms are

caused from an environmental toxin such as smoke, perfume, cleaners etc. There are a lot of foods I don't test allergic

to but I am sensitive to such as tomatoes, chicken,etc, anything with citric acid or additives in them. Eating them doesn't

cause me a rash, sneezing, or the typical reaction but it will cause my ears to feel full or congestion. Can you take

antihistamines? Even if it isn't an allergy the AH should help remove the fluid. If it is Meniere's you want to be careful

not to get water or any liquid in your ears or it could cause vertigo. Hope you figure this out soon.

By the way, I didn't get an email but I've been having computer problems so that may be the reason.

[paona]

I don't have POTS, my 16 year old does. I do have Meniere's so I will share a little about that. In my late 20's I had sudden fullness in both ears (like cotton in them) and loud whooshing sounds. Soon after I had significant hearing loss in both ears. I did not have vertigo but did have a few times of dizziness and loss of equilibrium where I would bump into walls walking down a hallway. I was diagnosed with Meniere's based on the symptoms and my hearing test. There is no way to see the changes in the inner ear without damaging it. All research is done on cadavers for that reason, I do know that environmental and food allergies can affect Meniere's and autoimmune issues may be a factor in triggering Meniere's. My Meniere's was episodic for about 5 years and then it was not an issue except being left with a mild hearing loss in my right year. Then 20 years later I woke up having significant hearing loss in both ears leaving me unable to use a phone or even having a one-one conversation without struggling through it. For me I believe there is a direct correlation to my difficulties controlling my Hashimoto's (autoimmune hypothyroid). The damage seems to be more intense now leaving me with moderate hearing loss and constant tinnitus (sounds) in my right ear and a mild loss in my left ear. This time around I have had severe vertigo where at times it lasted 24 hours with the room spinning at a very fast pace or would jump up and down repeatedly. I don't know if there is a correlation with dysautonomia and Meniere's but I do know that anytime the body is not regulating right it can cause problems with Meniere's. I would also think that blood flow changes could impact Meniere's. I would encourage consulting an ENT if you are experiencing fullness in your ears, new ringing or whooshing sounds, hearing changes, and vertigo or dizziness that follows. http://www.pehni.com/patient_ed/menieres_disease.htm

http://www.pehni.com/referring/menieres_BPV.pdf (information on Meniere's from Dr. Paparella who does research on Meniere's)

[Katybug]

Hi Naomi. I have constant tinitus/ringing that never stops and is sometimes really loud and I also regularly experience my ear drum "fluttering" which I can hear and feel. It's kind of like when you get an eye twitch except its in my ear drum. I also get a lot of stuffiness in my ears but it is not constant. It seems to ebb and flow with the rest of my POTS symptoms, worse on the bad days, better on the good. My hearing has also become annoyingly acute due to the dysautonomia. I hear things way before anyone else can (but they eventually hear them once the noise gets closer/louder. That's how I know I'm not hallucinating. ) The ENTs couldn't find anthing wrong and in fact said that my hearing test was the best they had ever seen (No surprise since I can actually hear dog whistles now. This is not a gift a have always had...just since POTS arrived. ) They somehow ruled out Meniere's but I'm not sure how. I hope you are able to find an answer soon. The ear stuff is pretty annoying...I often can't be in the room with my parents when they watch TV because they both have mild hearing loss from aging and it is so loud to me that it actually can make my other symptoms (nausea, dizzy, hot flashes) flare up.

[yogini]

I have noises (crunching/swooshing), pressure and fullness in my ear. I have had many sleepless nights because of this. I went through extensive tests and multiple ear doctors and vestibular rehab. After all of that, we concluded my "ear issues" are related to POTS. The inner ear plays a part in blood pressure. Usually, when you have an inner ear problem, the room spins round and round and can be triggered by just moving my head. My dizziness is more of an off-balance/floating feeling, not spinning and is more triggered by positiional changes (and not affected by moving my head).

There are definitely some people that have POTS and inner ear conditions, but I also think there is a lot of room for misdiagnosis, because doctors don't know enough about either of them. There are some overlapping symptoms between POTS and ear problems and. like POTS, some ot the ear conditions are not clearly understood or tested for.

[Lette]

Ok, get this, I have had ear problems all my life, severe glue ear and 12 operations since the age of 7, I am now 28 and up untill my new meds I was severely deaf in recent years, Bi Lateral hearing aids, sign language interpreter, the works!... I was put on meds in april for pots and since I have had an amazing improvement! I have an appointment in January with my ENT proffessor, I cant wait to see what is going on!!!

[puppylove]

Every morning when I wake up my ears leak or something. They feel funny and then clear liquid starts to come out, usually runs out of both (sorry to be gross). It happens no matter when I have last showered so I don't think its water. I don't know what it is. Any ideas?

[POTSMama]

As an audiologist, it sounds like some of you have a number of potentially different ear conditions, maybe unrelated to POTS (e.g. allergies, Meniere's, progressive loss, etc). THAT SAID, I'm convinced that blood flow issues in the ear are a factor in POTS. Since developing POTS, I have had tinnitus (first one ear then both) that occurs when I'm symptomatic and goes away when I'm not. Also, I've had the feeing of muffled sound, but my hearing test doesn't show a problem. I even had a full MRI scan of the auditory system and it found no problem (this because my tinnitus started out unilaterally, which can be a sign of tumors).

Katybug, interesting that you have hyperacusis (better than normal hearing) as one theory on that is that there has been nervous system damage that perhaps disrupts the efferent suppression pathway and seemingly POTS could do that. Some of the hyperacusic patients I've seen developed improved hearing after a trauma to the head and others after viral illnesses. Hearing that acutely is not always a good thing, as you note, because some people with this can't stand the loudness of everyday sounds and become a bit housebound because of it and wear earplugs a lot. There is some research on desensitization of the auditory system for hyperacusis (and tinnitus) but I don't know how successful it is in a POTS patient.

Now, in terms of vertigo, a common cause beyond Meniere's is simple BPPV (Benign Positional Vertigo) and I've had episodes of that since my POTS that also comes and goes and also seems to be tied in to symptomatic times. It's presumed caused by crystals in the otoliths in the inner ear, but I suppose blood flow issues could also be a factor. This is all hypothesizing realize as I am not a medical doctor. Hmmmm.

[Katybug]

Thanks for the information, Carol! And, yes, the hyperacusis is very annoying...I never realized how much background noise there is in the world until now. And, the "white noise" machines in offices and stores are like nails on a chalk board! But, the rest of the world doesn't know it because they can't hear it. It's weird! It also makes it seem to others, at times, like I have a hearing loss problem because when people talk to me, I sometimes have to ask them to repeat themselves even though I am clearly paying attention to them. It's because the background noise is so loud for me that it becomes hard to focus on hearing just the person who is speaking. It turns out having super-powers isn't all it's cracked up to be!

[dizzyallie]

My ears are differently a prob - but I have been thoroughly tested. I get vertigo attacks on top. But they always pop, feel full and dizziness is affected by head position also for me. I swear there is an ear element at play though.

ENT says POTS has messed up vestibular system, so am waiting for meds for POTS to see of there's a difference in symptoms. It's definitely not all POTS with me. Have strange symtpoms like intolerance to patterns, angles the tv is on etc etc.

[HopeSprings]

It's definitely not all POTS with me. Have strange symtpoms like intolerance to patterns, angles the tv is on etc etc.

Yes, I have those strange visual symptoms too, which I am consistently told is due to a vestibular problem. But what is the problem? I'm still not sure if this is all from POTS or if there is an inner ear condition? in addition to POTS. Then again so many of us with POTS have these types of symptoms.... I just don't know. I do still think it's possible that the vestibular system is the culprit - triggering a malfunction in the ANS.

[Katybug]

dizzyallie and Naomi,

I also have lots of strange visual issues. The POTS neuro (his specialities are autonomic dysfunction and migraine syndromes) said he has lots of autonomic patients that also suffer from various migraine syndromes. I thought the visual and auditory things were somehow linked as well but he felt that the visual (or at least a lot of the visual weirdisms) were from my migraines. I am now on Depakote as a profilactic treatment for my migraines and it is really helping me with the headaches, and as he suspected, a lot of the visual issues. I still have some visual issues but not nearly as many and its not nearly as intense. In theory correcting the migraines has corrected this set of symptoms too. But, I do wonder what other impact the Depakote has on the overall autonomic picture as it is an anti-seizure med. My point with this being, do either of you also suffer from migraines?

[icesktr189]

I really think POTS caused the ear problems. Before I crashed again, I didnt have a problem with my ears. Then the worse I got POTS wise, the more and more symptoms started popping up with my ears.

[POTSMama]

Since it's starting to look like I have MCAD with my hyperadrenergic POTS, I think the visual disturbances I have lately had (blurry, double vision off and on) are due to mast cell activation as I've now read that can be an issue; However, I also have suffered with migraines for even longer than I've had POTS and yes, that can cause visual disturbances too - - but only when I'm having a migraine.

As for the ears, yes, maybe I wasn't clear before, but I have no doubt that POTS can cause problems with tinnitus/noises in ears, vertigo/dizziness, etc, simply because of blood flow problems in the inner ear and vestibular system. I was just pointing out that some of the symptoms some are reporting in this thread may also be ear issues unrelated to the POTS (like Meniere's or fluid i nthe middle ear). In any case, it does seem that many of us are finding a tie-in to the POTS. The most obvious thing to me is that I get loud tinnitus (ringing in the ears) when my blood pressure/pulse get way off or when I'm having an MCAD reaction.

[kmichaelson]

I just want to chime in too because I've had unexplained ear problems for quite some time too! I've only had really obvious PoTS symptoms for about 2 1/2 years, but I've had ear problems for more than 10 years. The most annoying thing is that it feels like there is water in my ears all the time!!! It's especially annoying when I'm lying on my side and I can feel it moving around, but the weird thing is that ENTs tell me there's nothing in my inner ear... One doctor thought maybe my nerves were affected from having sinus surgery a long time ago, but I wonder now if it's a PoTS issue, something to do with blood flow (or lack thereof) since so many people on this forum seem to have similar issues.

I also have constant dizziness and some vertigo as a lot of people in this thread have mentioned too. I know dizziness is very common in PoTS, but it seems like actual vertigo is not usually explained by it. I get the weird vision and eye symptoms people in this thread have mentioned too.

As much as I hate these symptoms and feel bad for anyone who has them, it's such a relief to know I'm not alone in having these weird, unexplained things!

[HopeSprings]

I've only had really obvious PoTS symptoms for about 2 1/2 years, but I've had ear problems for more than 10 years. The most annoying thing is that it feels like there is water in my ears all the time!!! It's especially annoying when I'm lying on my side and I can feel it moving around,

Yes, me too with the feeling of fluid. I can hear it and feel it in there, especially when laying down. It's incredibly annoying. My ears bothered me before POTS too.

Puppylove- Mine are also moist inside after I get up from laying down for a while - I can actually feel the wetness with my fingertip. ENTs provide no good explantion, except maybe wax- but it's not wax. In fact, I never have ear wax - pretty sure I don't produce any anymore.

Katy - no migraines here.

[Hope]

I was diagnosed years ago with Meniere's and was told to stick to a very low salt diet. That worked quite well until my POTS surfaced. Now I need salt and my ears are not well again. I have to be careful how much salt I take in because too much will definitely send me in to vertigo.