Ears And Dizziness Question

[zoe ashcraft]

Hi all,

I'm new here, first post~ I've not yet gotten any treatment for my POTS although, I do wear compression stockings EVeryday- and had One great, (what's the word....?? unexpected?) Saline infusion - which was one of the things Dr. Francomano suggested I try -

anyway, my question for y'all today is about ear pain. (the eyes go along with it too) I noticed that it's listed as one of the symptoms of POTS, along with light sensitivity- I'm just shooting in the dark here, looking for any clues or leads whatsoever- my ear pain, which has been a mild problem for years has become reaLLY bad the last week- not an infection I'm thinking but terribly painful so much of the time, sometimes so sharp and violent it brings me to tears. I am hoping to try ear plugs for the constant dull pain (like Yesterday- not driving and not having any money makes everything difficult! )

my balance has gotten much worse- I frequently loose control of the left side of my body in particular- (the right ear and the right side of my head are the worst in regards to pain) I have frequent falls and have a hard time staying alert/awake- when at the computer screen- (do try sunglasses now and then) - what do you all do?

I am having a very hard time getting around my house even. with walker close by-

In your experiences- do ear- inner ear- tests (have no idea what they would be) come back normal for people with POTS- ??? I have a good friend with a daughter, conditions similar to mine- Cranio-spinal instability and POTS, Tethered Cord, and EDS- and the tests came back normal so the ENT ignored her complaints.

Looking for suggestions and desiring to hear about your experiences.

If I had the sugeries I need- for Tethered Cord and Cranio-spinal instability- how much of this do you suppose would be resolved? Or how much would remain, being a part of POTS??

I know it's a lot of questions, I'll be grateful for any reply

I'll do an introduction, somewhere~ in a little bit~ today~

from somewhere over the rainbow!

zoe

[mountainsunflower]

Hello,

I don't know if ear pain is related to pots... But i do have ear issues. (i have fluid in my ears) I also get dizziness and vertigo in addition to the pre-scope pot symptoms. they think the vertigo is related to the ear issues. I have had balance and hearing tests, mri's, and c-scans.... (too many tests) everything seems normal- and my ent wanted to just blow it off and blame it on pots, but my cardio was sure the ears and vertigo was not related. I pushed the issue and finally made it to an allergist and she thinks it is due to allergic rhinitis- they found out i have horrible allergies and i dont have the normal symptoms of itchy eyes, running nose, etc.

i am not sure if this answers any questions, i also dont know if you can have ear pain and vertigo with out ear problems- and it only being the pots.?..but thought i would share my story anyway... so many pots symptoms could be something else.... or just pots- its crazy!!!

[zoe ashcraft]

Yes, it is crazy~

Thank you for replying- having tests that come back all normal is what I'm afraid of, that's been the 'story of my life' -

always falling through the cracks!

I didn't share yesterday- but I am having along with the increased ear problems an equilibrium problem worse than eVER-

I cannot walk a straight line for long, the upper part of my body veers to the left and even sitting at the computer, my head has to be held to the left or my vision is askew.

Does anybody else have experience with this kind of problem?

help?

thank you,

zoe (guess the colors don't work?? or the fonts??)

[yogini]

You've posted a great question. Theoretically, POTS shouldn't have any affect on the results of an inner ear test. If you have any issues with the inner ear, I would go ahead and have the testing, because you may have inner ear issues in addition to POTS - some here on the forum do.

Beware, though, because inner ear testing is not always clear, and they may give you a diagnosis bases upon semi-positive test results and the symptoms you're having. That happened to me. I went to 3 months of inner ear rehab, which was supposed to clear up my ear condition. When the symptoms came back, we realized it was POTS all along. The rehab actually helped me to regain my balance and get back on my feet, so I can't complain too much!

[ajw4790]

Hi!

Welcome! I think that there is overlap at times between inner ear disorder symptoms and dysautonomia, but there is a lot of differences as well. There are a handful of people on the board that have both an inner ear disorder and dysautonomia. But, treatment for the two IS different and treatment of one could make the other worse, so it is best to know what you are dealing with. My own personal opinion is that it sounds like you really need to look into getting tested at a vestibular clinic. So, not just go to an ENT, but go to a dr. that specializes in vestibular disorders. Then, as some people have mentioned even if they do not find anything concrete, for some people the vestibular rehab is helpful for the symptoms you describe.

Also, I would encourage you to continue to try to find answers on the dysautonomia side of things.

Also, your post almost madee it sound like you are assuming you have craniocervical instability, tethered cord, EDS. Do you have these diagnoses from a doctor or is it based on symptoms that you have? Because that would be a whole other ball game... IF that was the case you would also want to consult with an EDS and/or other applicable specialists.

If you are not located by doctors that understand these conditions you may need to travel further to see a doctor that does look for and understands more than your "typical" conditions/disorders.

I hope you find help soon!

[MelissaCrystal]

An inner ear problem definitely can cause dizziness, but if it is the cause of the dizziness it is in no way related to pots---that's what's I've been told. It's either something related to the nervous system or something related to the inner ear, and if it's both, then you're really unlucky but it's very unlikely.

I personally have a lot of issues with my ears because water likes to get stuck in them and cause infections. I've always been prone to them since I was a little baby. It's mostly in one ear. I really don't think it's related to POTS at all, and if it is, it's some very small and unusual connection like my ear swells in reaction to water and traps it or something, who knows. Most of my symptoms would be something for Dr. House to solve, as you'll find with many of our other unusual symptoms.

Definitely go to an ear specialist and see if you can find out where the pain is coming from. I really don't think it's typical of POTS, but that doesn't mean it isn't typical for people -with- POTS. We have so many issues because we're like stacked cards (I don't know the saying, but take one away and other parts of us falls). So who knows. No one can really say what is related =) Too little research.

[zoe ashcraft]

Hi, and thank you so much for the responses~

i am completely overwhelmed with my decline this past week. first my ear sensitivity and pain became intolerable, then the equilibrium went-

and yes, i have been dx. with cranio-cervical instability and tethered cord, so something related to the nervous system??? is possible i guess~ my walking has also gotten worse, dragging my left leg more and more of the pigeoned toed from the hips down.

considering the above, would a vestibular clinic still be the place to request? or just an ent? or talk to my neurosurgeon? (of course i'm trying to do that, but hedging because i'm afraid i'll not say the right things)

i have literally no money and no income and am way way below poverty level. haven't been approved for disability yet- either. can only be approved for SSI which will never allow me to get MediCare- but- i have a father who is supportive- so travel is possible, if necessary.

in my heart of hearts i feel like i need to go back to TCI- like they are the only ones able to see me down in this little crack where i live. but i've gotten way off topic~ maybe that helps you all to understand where i'm coming from better.

i have a carepage if anybody is interested.

www.CarePages.com

(prismed)

from somewhere over the rainbow,

zoe

[mountainsunflower]

Hi

You might want to try and see if you can get a hearing and balance test- if anything to rule out all the bad stuff and leave your mind at rest. I don't know how much it costs with out insurance, but it is a simple test that a specialist gives and is pain free. He can rule out any central nervous system stuff.

i am sorry you are going through so much, i know that the tests are a pain, but sometimes if anything, they are helpful in ruling out scary stuff and maybe, just maybe leave the mind at rest... I hope things come together, take care

[zoe ashcraft]

Thank you for your advice~ I hate to be obtuse but the hearing and balance testing be done with an ENT then?? or the Vestibular Clinic type of place?

A couple of years ago, when I first started having trouble with my balance badly- two months after open heart surgery, i'd lose control of the left side of my body and topple over, not be able to move or speak for an hour at a time. my cardio- said he thot i might have an inner ear infection since i felt dizzy with certain sounds and put me on an antibiotic- 3 weeks later my MD said he didn't see any sign of an infection-

i always wondered if an inner ear infection was the same thing as a regular ear infection and if it could be ruled out by looking in the ear why my cardio didn't look- (i've got a lot to learn)

the only other thing is that i've been getting small sores on my head too. Bumps as well, but i can't be sure if they're from falls i've taken or not. one is a reallLLy old scar from falling off a moving vehical when i was young and it's always bothered me, but moreso recently.

btw. I do have MediCal- State provided insurance, it's just often extremely hard to find anyone who takes it and they have an outrageous law that doctors can't take you as a self-pay patient either- which I really don't understand- but that's the breaks.

Thanks again for the input*

from somewhere over the rainbow,

zoe

[mountainsunflower]

Hey there,

I got my hearing and balance test from a specialist however, he was referred by my ENT. So, i don't know, i guess the ENT is the best place to start.

As for the inner ear question, don't quote me on this, but i am pretty sure you can only see the middle ear by looking into it. (again don't quote me, i am not positive) (but i think looking at the middle ear can tell you if there is an infection-because there is fluid or redness????) I am not sure if you can see much on an mri either.... my allergist said something about being able to see big stuff (like tumor) but that was it... who knows, she is talking about scoping my sinuses and looking at my ears.... (i would go back to ent for this.)

I think the balance and hearing test was worth it- they were able to rule out (or diagnose) a lot with out doing any invasive tests. It didn't take long and i guess they can tell if you have inner ear disease, central nervous system problems, and other. It may just be POTS but it is nice to know it isn't something else!!!!

Take care and good luck.... i know how tough it can be dealing with extra dizziness and vertigo (along with the pots dizziness and pre scope)!!!!

oh, my doctor told me lots of water helps with the ears... (i can't remember why- but her explanation made since at the time. ) guess water is a cure for lots of things!!!