What is wrong with me (ETD, labyrinthitis, etc.)?
Posted , 9 users are following.
Hello everyone. I wish I could say I am glad to join your group but sadly it is under terrible circumstances that I am here right now. I appreciate any advice that can be offered.
Here is my story. I am 28 years old. I am the sole breadwinner for my family as my wife is staying home with our six-month old daughter. Prior to about 6 weeks ago, I was perfectly healthy and had never had any real medical issues in my entire life.
About 8 weeks ago, my daughter got sick. She didn't seem deathly ill but she definitely had a cold/flu bug of some sort and her nose was dripping with snot. At one point, while I was holding her, she wiped her hand around her mouth and then stuck it right into my mouth with all the snot on it. I knew at that moment I would catch her flu bug. And yes I did.
About a week after that I had one of the worst cold/flu bugs I have ever had. It wasn't particularly noteworthy, just a really, really bad cold where I was hacking up a lung and my sinuses were running like a faucet. I was sick for about a week and then the primary flu symptoms began to subside and my cough went away. Little did I know this was just the beginning.
As my cold went away, something happened with my sinuses. They had been congested and snotty like most people get with the flu but this was different. My entire sinuses blocked up like a rock. Around my temples, through my nose and under my eyes I felt intense facial pressure like I had never experienced and I began having sinus migraines. The weird thing is my snot wasn't running. I could barely force anything out at all. It was just this complete blockup with recurrent sinus migraines. It was, for lack of a better phrase, debiliating. Sadly, this was still only part of the beginning.
About a week or two after I developed my sinusitis, I began to develop a clogged sensation in my ears. It made me feel very uncomfortable. One night, a night I will never forget, I tried forcefully to blow my ears open using the Valsalva manuever. I tried this repeatedly out of frustration. I could feel (and still feel) air feeling like it was flowing through my inner ear and then hitting a wall. I tried harder and harder until my ears had such a full feeling I had to take a sleeping pill to go to bed. The next morning I woke up in what is now my permanent, never-ending state: dizziness, disorientation, difficulty reading or focusing on anything, a dullness and diminished state of hearing, and wobbly vision that lacks the sharp definition I was used to. Unfortunately, I am an attorney and my career does not lend itself to prolonged periods of rest and relaxation to get over or figure out an illness. Every day I have to get up and trudge through the day. Sometimes I fall out of my chair or collapse into walls. I have argued in court when I almost could not hear what the judge was saying (or see him either). Unfortuantely, I am the sole breadwinner and I have no options but to trudge through the day. My life now is dulled in all senses: things that should excite me, like my newborn girl starting to crawl or talk, do not really excite me; and things that should greatly upset me, like getting chewed out by my boss/wife, have no almost no effect on me. I am dulled to evertyhing and all I seem to think about is my hope that one day this will go away.
Medical time. When the sinusitis was bad I first went to see my primary care doctor. At the time I mentioned my ears but complained that my primary issue was the sinusitis, which it was. He put me on a strong 5-day dose of levaquin and gave me an antibiotic shot. After doing some research I have since learned that 90-99% of sinus/ear infections are viral and, thus, antibiotics are useless. But let me tell you what: Levaquin had some insanely negative side effects that almost made me crave a return to my typical disorientation. Horrible drug.
I next got a referral to an ENT specialist. I was put on a 10-day dose of augmentin and a 6-day declining dose of Prednisone. Neither worked, and the prednisone carried negative side effects that rivaled the Levaquin. At this point, my sinusitis began to subside and the ear issue became much more pronounced. I also had a tympanogram done which revealed a slight amount of fluid in my right ear and none in my left. This was surprising given the intense pressure in my ear that I assumed was surely the result of fluid.
I returned to the ENT doctor about two weeks later. The doctor gave me a nasal endoscopy and discovered, somewhat surprisingly, that I had no trace of infection that he could see. He attributed this to allergies, something I have never had problems with in my whole life. I thought it unusual that I would a have first-time allergy flareup contemporaneously with the worst cold/flu bug but the doctor theorized that is what he thinks happened. Most surprisingly, he ran another tympanogram which determined that I now had no fluid in my ears, despite the fact that my disorientation and ear issues were worse than ever. He also ran a hearing test which confirmed I have diminished hearing in both ears. The doctor also told me, MOST surprisingly of all, that my eustachian tube looked clear and healthy. At this point, I was convinced I had ETD, but the doctor said he doesn't think that is the case. He scheduled me for a CT scan for tomorrow.
Today, I get a call from my insurance company indicating they are denying the CT scan request authorization as not being medically necessary. My ENT doctor says he will fight them on it, but I am not sure a CT scan will even reveal anything about my ears.
Some other miscellaneous facts this. When I blow my valsalva manuever, it really does feel like the air travels through and hits a wall. I am not sure what this means but that is what I feel. I also used to sleep with ear plugs. I don't know if that has anything to do with it. Now for the real kicker, I used to have ear wax buildup as a child. So, this week, I thought I would by an ear wax treatment kit. At first it felt relaxing and I thought "hey this might be it." Then, we shot the bulb syringe water into my ears and it caused an intense pain and now my ears are, today, the worst they have ever been. But my ears clearly had a negative reaction to shooting the water into my ear. For diagnostic purposes, I do not know what that means or if this would occur if it was truly ETD, labyrinthitis, etc.
I really am open to advice on what this could be. It seems like the ENT doctor mantra is to just wait and see but I really can't wait much logner. At some point, this is going to cost me my job/career. Some days I am so dizzy/disoriented it is really a miracle I make it through the day. I regularly have to call my spouse to come pick me up from work. I am sure my coworkers are confused about that. I don't know what to do. I have no fluid in my ears, my eustachian tube looks clear, water pressure exacerbates the symptoms. What is this thing?
0 likes, 13 replies
Wannaflbttr1 andrew85966
Posted
dusty11280 andrew85966
Posted
sorry for your condition. it sounds like what I am experiencing.
benign paroxysmal vertigo
I see a doctor next Monday but there's not a lot that can be done about this. the Epley maneuver is said to help. I'm an "old lady" in the U.S.
Good Luck!
Donna
dusty11280 andrew85966
Posted
benign paroxysmal vertigo
it worked for me for over a year. I took it every day, got it at Amazon here in the U.S.
Waffalobill andrew85966
Posted
I had a similar experience. If I get a sinus infection, and it drains into my ears, I am screwed. Blowing your nose hard, making my ears pop, makes it worse. Then I know I will get vertigo and dizzy for 3 months. I had a blockage one time in my one ear. Went to docs have him clear it. I tryed it wouldn't come out. They had a student treat me. First syringe she got most of it out no problem. Second one she pushed to hard, blew my ear drum out. I felt it. Then pumped my inner ear full of water. Got a bad infection. After I got rid of it, the vertigo set in. was not happy.
Lasted 3 or 4 months. Remember that one well cause I was dizzy for x- mas and lasted til spring. If your infection is cleared up and all is healed with ears, I would try going to therapy. The fluid in your ears , the blowing your nose, the coughing. May have moved a crystal around. Epely maneuver may help. Some therapy may also help. Therapist may be able to help. They deal with this thing alot. Cat scan will show tumors etc. MRI shows recent strokes etc. What i was told. Insurance usually won't fight a couple trips to therapy / rehab. It's cheaper than other things. I am by no means a doc. But those are the things I have had to do in the past. I have had Cat scans and MRI's tho and had other more serious things ruled out. FYI the MRI with contrast was 4 grand.
Lifeisablessing andrew85966
Posted
Sounds horrible! Being dizzy does steal your happiness and ability to function as a normal person. Some people on this site have been dizzy for years! I wouldn't take meclizine. My ENT doctor told me they dry up the fluid in your ears and and create an imbalance. I cried when he told me that. I took them every day and I told him that's all I have. I haven't took them since. My dizziness started 9 months ago. It has gotten a lot better! When it first started I could not take care of my house and kids. My mom was here full time cooking and cleaning. I stayed on my couch and just felt horrible! I didn't move but the world would not stop spinning. I even felt it as I slept. Such a nightmare. Anyways I am doing better. There is hope for you! I am not 100% better but I do take care of our house and kids now. It may take time. Even vestibular therapy. I did it from the advice from this site. Keep reading, keep searching, keeping
Lifeisablessing
Posted
Sochima822 andrew85966
Posted
You should look up vitamin D. Sounds to me as if you're lacking vitamin D only because my brother went through something similar after battling the flu,cold,bronchitis, dizziness and allergies . After visiting several doctor's & coming up with nothing, one gave him a test see if maybe he was low in vitamin D. Which it turns out he was. He was told to take 6,000IU a day for 3 months, then reduce it to 4IU a day after that. He actually got cured and is now living dizzy free and cold free. Vitamin D3 kills a lot of infections, including cancer cells, and it is essential to have enough of it in your body to maintain good health. At the sign of a slight cold I take vitamin D3 and it kicks it right out, I never get a cold. Research has shown that people who are always sick lack vitamin D3, so since it doesn't cost that much, get a bottle and start taking it. Hopefully, it will cure whatever is bothering you now.
nicola41728 andrew85966
Posted
Dear andrew85966
HI.I completely sympathise, especially about the lack of cognitive function. I am a writer for whom writing has become almost impossible, owing to the loss of concentration and understanding, sharpness of response, dullness of wits, difficulty in getting around, and frankly, interest. The world is remote. I feel as if I have put on someone else's glasses by mistake, and everything is far away and unfocused. However, I have hope that things will get better.
For you, you should first of all rule out the vestibular disorders. These are derangments of the organs of balance - check them out, they're interesting, they look like what they are, which is spirit levels. Here, a few things can be wrong, and I don't know all of them: one very common one is what the other contributors suggest: Benign Paroxysmal Positional Vertigo . This is caused by the tiny crystals in these organs going adrift and needing to be repositioned. If you have this it may well (though not definitely) respond to one of two simple manoevres, which are horrible to experience but worth it if they work. You need a doctor to perform them but any GP ought to be able to do it. They are the Epley and the Barrel Manoevre. Epley is being chucked about as in a gyroscope; Barrel is like being rolled around on your bed like a very slow rolling pin.
If it is not that, it could be what I have: Viral vesibular neuritis ; or it could be Viral Labyrinthitis. There seems to be some medical confusion betwen these two. SOme sources say that Viral labyrinthitis has hearing loss asociated and the other one, not. Anyway, This is when a virus or bacteria wipes out the balance organs. They can restore themselves on their own, if not you have to re-train your brain to compensate. You go and do a series of tests on your balance, then to to a specialist balance physiotherapist who prescribes a series of exercises that you do with your eyes, your head, and so on. I am assured that I will be restored to factory settings in time; I am despondent because it is taking a long, long time (three months already) but there are definitely days when I feel more alert and less debilitated.
If you have already looked into these avenues, I am sorry for wasting your time. My doctor says that he has never met a patient who doesn't get better from this in the end. He is 65.
nicola41728
Posted
brenda99755 nicola41728
Posted
you are so right, please tell the person you replied to that it sounds exactly like viral vestibular neuritis and no medication works, just specialist balance physio and hard work on the exercises for about 6 months. I started yesterday, today am , in 2 days, feeling the benefit of expert physio. just as you tell him. It may be andrew 85966 but can't see all refs at once. I'm 20 weeks wrongly diagnosed but now feel the difference. Ask him not to give up, it sometimes gets worse when you start the exercises, but worse in one way as the damage is undone and the organ has to relearn and better as you teach it unremittingly to function. best wishes
andrew85966
Posted
I have a question re: vestibular disorders. I don't just have random dizziness. I have a clogged pressure inside my ears. Some days it is more "clogged/full" feeling and the dizziness is worse, and some days its less and the dizziness isn't quite as horrible (still bad). Still, there is something in my ears that it causing intense pressurre/fullness.
Do these match up with the vestibular disorders? Do you feel this with those?
Waffalobill andrew85966
Posted
A cat scan or MRI would show if you have something pressing on a nerve or something in your inner ear as well. Tumors,clots, etc.Think that's why doc wanted one.When they did my MRI they did slices of inner ear first. That took almost a hour. While she did those slices they sent a sample of my blood for kidney function tests. Make sure they are working right as they filter out the dye. By the time she finished inner ear slices, blood work was back. She gave me the dye. Did brain scan.
mynameisElla andrew85966
Posted
Sorry I am late to the party. I’m sorry to hear about this. I like you struggle with dizziness and a lot of other symptoms (just not hearing loss). I have had a lot of ear infections over the years and was diagnosed with ETD. While I am no doctor, I have visited lots of doctors to rule out conditions and have learned a lot in the process. A couple of conditions come to mind...
First is Ménière’s disease. Hearing loss is common and once you learn the triggers, you can control it. A lot of time this is hereditary. Check with a doctor to see if you have it.
Another condition: TMJ and VCD (vocal cord dysfunction). Surprisingly, these two conditions can mimic the flu, mess with the sinuses (the muscles surrounding them) and cause pressure on the ears (eustation tubes) and breathing.
I hope this helps. I had one last condition but seeing as it’s late and I’m tired, I forgot. Make sure you get your iron checked as dizziness can be linked to it. Even autoimmune diseases can mimics those side effects as well as low thyroid. Good luck!