Please dont worry, it sounds like u got a hair stuck in there honestly. I mean, yeah it could be a fungus, but it sounds like a strange presentation of one. Usually they're clumps or dots or patches. Get that right ear cleaned out too, maybe that's why it's stuffy on that side. I seriously hate when dr's tell u ur ear has a lot of wax in it. Then do nothing. Annoying beyond annoying. I'm sure she probably couldn't remove it but ur ENT or PCP should be able to. And they should use an instrument not high pressure washing.
I'm sure your thyroid will turn out ok. Maybe u just have hypo or hyper thyroidism and need meds to control it. It could contribute to ur stuffy ears, seriously, look up thyroid and ears. Maybe u will finally get an answer! Look at it that way. The worst is when they say nothing is wrong, goodbye, deal with it. So at least it's something, and don't think cancer cuz I really don't think it is. Just my gut talking.
I'm hoping your bloodwork comes out with some answers for you. I think it will help. I know how miserably tired of this u are I am just tired of it too. I was actually reading about chronic illness and grief. There's a guy who wrote an article that I liked. He said some people go to the extreme of just wallowing in self pity and misery, and some take the 'pollyanna' approach and try to act like nothing is changed or wrong. Both of these approaches are wrong. We shouldn't wallow or act like Suzy sunshine either. The middle ground is better he says. Finding a place in your life for the illness and allowing yourself to grieve the loss of your former self, while finding your new normal self. I try to take that to heart. I keep telling u guys that I do this, but it slowly seems to be helping- I allow myself to feel what I need to feel and tell myself that it's ok. Ok to be sad mad worried helpless. We have to let those negative emotions and feelings wash over us sometimes. Otherwise how can we get better? If we hide those feelings inside too long, they will eventually come out much louder than if we take them as they come. So Joyce, you are not wrong for crying or whining even though it may seem that way. Don't be so hard on yourself. You're going through something life changing and difficult and upsetting. You have every right to have a pity party for yourself. It doesn't make you weak. Plus, I find crying cathartic. I always feel at least a bit better after a good cry. And I'm sure your friend loves you and didn't mind one bit that you broke down. Its hard to feel the way we feel, like Jenni said. The fact that we are still fighting after all this time says something about our characters. We are not weak, even when we cry. I know how hard this has been for all of us. A funny thing I keep forgetting to tell u girls is that I am totally being stalked by that Kelly clarkson what doesn't kill u makes you stronger song. Everywhere its on, everytime I get in my car or anyone else's it comes on. Especially, no joke, when I'm feeling really down about this. Maybe it's God trying to send me a message?
I'll leave you guys with a quote I like alot, which I think we all need to hear right now:
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.'†
You must do the thing you think you cannot do. "
~ Eleanor Roosevelt
I repeat that last line whenever I'm in a tough spot,and I tell myself that every morning as well- you must do the thing you think you cannot do.
The following user gives a hug of support to Jenmomof2: buffalonygal (05-08-2012)
The Following User Says Thank You to Jenmomof2 For This Useful Post: jenni9033 (05-07-2012)
Joyce, I agree...it could totally be a hair in there...I've read about this before. Sometimes a hair trapped against the ear drum causes all kinds of funny feelings. I can't believe your doctor didn't try to retrieve it! And yes, I HATE when they say you have a lot of wax and then send you on your merry way. I've mostly broken my Q-tip habit, but I still have the urge. What is aggravating me today is a feeling like bubbles of liquid clogging up my right ear pe tube, the side that had the Niagara Falls gush of fluid last night. There is DEFINITELY fluid in there still, because I can blow through that tube by valsalva and actually hear it bubbling and squeaking.
Oh! And my doctor's advise nurse never called me back today, so I never got an answer about what I'm supposed to do about this new fluid building up in my ear!
I have some more thoughts to share with you ladies, but I gotta get my two kiddos in bed. Mondays are very long days for me since the kids are home all day (no school on Mondays or Thursdays) and my husband has an event he attends Monday nights. So that means I am sole caretaker for all but about 2 hours between my husband getting home from work and then leaving again. Today was sunny and hot, so I took my kids to the park, then took them swimming, and now am completely beat. This is exhausting under the best of circumstances...I think us chronic illness moms deserve a medal sometimes.
I was thinking more today about the virus connection and wondering if this is the result of some new superbug that hits the ears and screws them up? Because in my extensive googling, it seems like there has been a HUGE uptick in people having this problem, all within the last 3-5 years.
I'll keep all of you in my thoughts tonight and think positive, healing thoughts, even though it's hard to stay positive since we're all going through so much crud. I'm also going to force myself to stay off my phone because it inevitably leads to googling and getting caught up in that.
The following user gives a hug of support to jenni9033: buffalonygal (05-08-2012)
Hi ladies and THANK you for the encouragment..I just got back from getting my bloodwork, 8 vials...should have some results by this afternoon but the hormone/thyroid ones may take longer the girl said..so i will wait to see what it shows...gota schedule the thyroid u/sound, will let u know when i go for that....i figured there is a connection between ears/thyroid, will have to google today when i have time, but, like u guys, almost hate to do it cuz then i just keep reading and reading til i scare myself silly. I've know ive had nodules on my thyroid, but never could feel any lumps (got the initial diagnosis a year ago) but as long as my levels were ok and it wasnt bothering me, the dr said to just monitor it...so now its to the point where i can feel it, so its time to do something about it........Ok back to the ears.......hopefully the ENT can just get the wax outa the rt one and get the hair or whatever it is outa the left one........starting to wonder if, whatevers in there is giving me that constant creepy crawly sensation? I too, wonder about the superbug...since we've all taken so many antibiotics, we are prolly resistant to most.....prayers for you girls to have a good day........and i thank you for your prayers as well........!!!!!!!
WOW i just googled thyroid and ear pain/fullness...there IS a huge connection...gota go to work so dont have time to read alot right now..but there is a connection for sure...think i will post on the thyroid forum and see if anyone has similar symptoms!
I have my MRI results back. I was wondering if any of you know how to be able to share them with you all via a pm or other way that is not completely public. We have a lot of information to process and take in. For the privacy of our family I would prefer to not post the results publicly here. In the meantime I would very much appreciate your prayers as we begin the process seeing physicians and learning what we are facing. We have two appointments next week and films will be going to the neurosurgeon in Boston tomorrow.
I am sorry that all of you ( us) are struggling so much right now.
I truly appreciate the support and encouragement that we have shared as we have gotten to know each other through this journey called ETD.
The following 2 users give hugs of support to: LoopyLuci buffalonygal (05-08-2012), Jenmomof2 (05-08-2012)
Don't know if you'll be reading this anytime soon, not sure how busy you're going to be, but please know that my prayers are most definitely with you, and that I hope that whatever that MRI said, it will be a means to a happy ending for you. I'm very worried about you, everyone on this board is like a friend to me.
You sound like a very strong person, and whatever it is that you're going through, I know you will get through it.
Sending hugs your way,
Last edited by moderator2; 05-08-2012 at 09:27 PM.
The Following User Says Thank You to Jenmomof2 For This Useful Post: LoopyLuci (05-09-2012)
Thank you ladies for the prayers and encouragement. We have answered prayer in that we were able to get in with a Neurologist for an appointment tomorrow. We greatly appreciate the continued prayers for wisdom for the drs that will be reviewing my films and reports tomorrow.
I agree with what Jen said, we have all gotten to know each other through this site. After sharing struggles together, you do feel like friends!!
Hi ladies...........Luci, so glad you got into the neuro so quickly...that is an answer to prayer, we are all continuing to keep you and your family in our prayers. Im thankful to have found this site and such good support.......keep us posted and know that you're in my prayers xo
Here's a little update on me guys, I finally spoke to someone at that otology group that I'm supposed to see on Friday and it turns out they can't do much more than tubes. So I'm going to save my money. We just got a state Medicaid card that we have been waiting on since January, so I tried to find an ENT on that network. Turns out that the university of Illinois at Chicago (UIC)'s medical college accepts it. So I got an appt for June 19th, earliest I could get. I will see an sinus/allergy specialist 1st, then go from there. They have an otologist that I can see if need be. So we will see what happens. I'm waiting on pins and needles right now, hoping that this appt will set me on the road to recovery.
Joyce- Any bloodwork results yet?
Jenni- How have you been doing?
Luci- You're a fighter, you will get through this and come out even stronger on the other side.
Please update me when you guys get a chance!
Inspirational quote of the day:
'I have had dreams and I have had nightmares, but I have conquered my nightmares because of my dreams.'
Hi ladies, just a quickie -- I'm down with a blocked right ear and fluid in the ear. This is the first time it's totally blocked since my initial 48 day blockage back in Dec/Jan 2010/2011. I'm feeling really down about it...I forgot how awful 24-7 blockage is. Even the Ear Popper is having trouble blasting that side open, and it closes immediately. My hearing is way down on that side. My ent-allergist here prescribed some drops to try to keep it from turning into an acute infection.
But that's nothing...I've been thru it before, I know it will eventually open. Luci, I'm worried sick over you, though. Do know that you are in my thoughts and prayers. I'll try to figure the pm thing out; I know it works because someone sent me one today.
I'll try to write more soon. Thinking about you all and keeping fingers crossed we are all going to get better and find the answers we need.
The following 2 users give hugs of support to: jenni9033 buffalonygal (05-10-2012), Jenmomof2 (05-10-2012)
O Jenni..i hope and pray you feel better SOON! prayers with you also...Good news Jen, that you can see someone that can possibly shed some light on whats going on...my bloodwork shows a wacky thyroid, very low vit D levels , still waiting on the hormone levels (they take 7-10days to get results)..got an appt with an endocrinologist but not til JUNE 26...ugh, but hes one of the best in the area..so i will wait......i do have an enlarged thyroid...ive read online there often times is a connection between the thyroid and women experiencing ear pain/fullness....soooooooo we wil see...gota do the 50,000IU of Vit D also for a few weeks..........all other routine bloodwork was ok...Last nite i had my mother's day massage...O MY it was wonderful..she spent alot of time on the jaw/neck area ...said shes never felt such tense jaw muscles..esp. on the right side (funny thing is my worst problem is on the left side) but she worked on it and then i also got a moist heat wrap to use on my jaw. Gettin an adjustment tonite from chiro....i just wish these ears would POP!! ughhhhhhh..so that is my update.........Im praying for all of you ..........take care!!!!!!!!!
Wanted to check in. First I hate it that everyone is sufferering so much!!
I truly appreciate all of the prayers and words of encouragement that you all have offered to me.
We don't have much of an update from our appointment yesterday. We drove to Alabama to be seen by a Neurofibromatosis neurologist specialist. He is going to have a radiologist from there review my films and see if there is something that he is missing. They are referring me to an ENT there who is also a NF specialist. He was somewhat reassuring to us. I am in a progessive state with my disease, but he doesn't see overly alarmed about it.
The dr there doesn't see how what the MRI is showing can relate to my current symptoms. : ( I was kind of hoping for some of the dots to connect together and have a game plan.
We still have two appointments next week with my local Neurologist and ENT. My films were sent to my Neurosurgeon in Boston. We are still praying for wisdom for all who will be reviewing my films and records.
Jenni, I hate that you have had such a severe relapse. Once you are established with Dr. Poe is it easier to get back in with him? It sounds like the gun shot pops were indicating that your ears were fighting something. I hope the ear popper works soon and effectively for you today. That has got to be a big disappointment . Do you think they new TMJ splints are making you worse?
What a relief it would be if your thyroid is what all of your symptoms have been related to!!! It is such a pain that it takes so long to get in with specialists. I did have my hormone levels checked and they were ok. I am thankful that you mentioned it to me.
I am glad you have a new ENT lined up to try. Really glad that you found out before hand that all the other one had to offer was tubes before you went and spent more money with him.
Jenni, please let me know if you figure out the pm thing.
I think I figured out the pm thing. I think you have to be a member for a certain amount of time before it will "unlock" that feature. Buffalo and I can pm b/c we've been on here a while. Frustrating, I know. Maybe a mod can let us know the rules?
Well, I got my right ear most of the way back open. I've been taking 12 hr sudafed, ibuprofen every 4 hours, mucinex, and Ear Popper 3-4 times a day. Also prescription antibiotic drops in the ear 2X a day. I'm not sure what has got the ear back open...I feel like the Ear Popper helped because after I treated myself this morning, like maybe a half hour later, I swallowed and felt a rush of warm liquid go down the back of my throat. It's SUPER disgusting to think this may have been the fluid in the ears...maybe it was just all the antibiotic drops sitting in my middle ear space. (My husband could actually smell the infection in my ear, it's that bad!)
It does worry me that this infection coincides with my starting the night split and then the day splint. But I also think it may have been beginning ever since my flight home from Boston, since I was having those weird gunshot pops all the time. I haven't had a gunshot SINCE the infection set in. My ear was so blocked at first that I couldn't get air into it using the Ear Popper. Then I could tell it was starting to break up because I could blow air in and the sound was like letting ear out of a balloon through its opening slowly...you know, how you can make that squeaky sound. So I took that to mean the tube was only partially blocked at that point. Then on my last treatment, the air blowing sounded much more clear. And the pressure is toned way down. It's still there, but I don't feel deaf and like I have a huge, swollen, dead ear. *sigh* I was really depressed when this happened because it took me right back to how I felt in Jan 2011 with the original ear infection.
I feel like even though my tubes are functional some of the time, there are a lot of predisposing factors leading to them becoming periodically blocked. I know it's my tubes blocking -- nothing else would give me an infection like that, a blocked, deaf ear. I don't have meniere's, and besides, meniere's doesn't produce visible clear yellow fluid dripping out of my ear. That's classic otitis media with effusion. Maybe SOME of the sensations I get in my ear are from TMJD, but I think MOST of the sensations are simply the tubes getting blocked up. Maybe the TMJD spasms are clamping down on the tubes. Maybe it's the fact that I'm allergic to all the crap in the air here and the tubes are swelling shut.
I wish I could have had video nasal endoscopy when I was in the acute, symptomatic phase of my disease. Otherwise, it's going to be hard to get a clear clinical picture. It's going to be a lot of detective work. I'm not blaming anyone...sometimes I feel normal for short periods of time, sometimes I'm blocked. I badly need a local ENT with the means to examine me when I'm highly symptomatic. Not that anyone is able to get me in fast enough to see me when I'm at my worst. It's frustrating!
SOMETHING has changed with my ears in the past couple of years. I never had ears blocking with colds, allergies, or flights. The only thing that makes sense to me is that I had a virus that damaged my tubes, that I've developed bad allergies (proven), or that I have TMJD (also proven through extensive testing and tomography). It's like a perfect storm...many factors coming together to create a real problem. Or I'm totally off track. It's SO frustrating...I was getting so upset at my ear the other day that it made my husband angry at me, and we got into it. He said he was sick of hearing about ears all the time. You can't blame him...but other than you guys, I have no outlet for this pain.
Luci, Buffalo, Jen...Do know I've been holding all of you in my thoughts and hoping and praying for the best.
Jenni, sooooooo happy to hear that you have had some luck in getting that right ear blasted back open!!! It sounds like you went about it in a very strategic manner. You must have had quite an infection in there. Hoping the gun shot pops are done for you .
A couple of thoughts/ questions I wanted to throw out to everyone.
I have noticed that when the barometric pressure is lower I have a much easier time clearing my ears. Oddly enough that is when it is raining or is getting ready to storm. The nicer the day, the higher the barometric pressure reading. Is anyone else watching the barometric pressure numbers to see what affect it has on their symptoms?
One thing the dr suggested yesterday was the possibility of labrynthitis. ( sp) Has anyone had this suggested to them as the cause of their eustachian tube dysfunction? I think because I have so much nausea and sickness with this is why that is something he said might be a possibility. But, having already done two rounds of steroids he didn't feel that there was much left to try in the way of anti-inflamatories. Motrin makes my tinnitus go sky high, so I have been avoiding it.
Jenn and Joyce have you ladies had some success with the olive leaf supplement that you mentioned? Jenni, is there anything along these lines that you have tried? And please, vent away as needed to us. That is why we are here!!