Help! What’s wrong with me?

Hi all!
After a week of stalking this page, I realized that everyone here seems to be smarter then most ENTs.
I’m wondering if anyone can help give me some insight, to discuss with my doctor about what could be going on. This will be long, I apologize in advance.
I’m 36, my entire life I’ve suffered with seasonal allergies. I’ve done allergy testing twice, always comes back negative. So I’ve been taking Flonase and Zyrtec/zyrtec D as long as I can remember.
About 3 years ago I was diagnosed with mild rheumatoid arthritis. I’m on 1000mg of Sulfasalazine, a very low dose. 2/10th of the allowed disease. It is in the aspirin family though. I’ve seen an immunologist and had my IGG factors ran. All good. My RA has been in remission since I started the meds, my inflammation factor is very low. I also have hashimotos, I’m on .25mcg of synthroid daily. My thyroid is very stable, always has been. I’m on medicine bc I’m actively trying to get pregnant. It’s to keep the thyroid in control.
Last April I’m going through my horrible allergies but my right ear kept crackling and ringing-the dreaded tinnitus. It didn’t feel full, it hurt- just fluid like. A mini hearing test in the office showed high frequency hearing loss in both ears, right more then the left but I was stupid and scared and never followed through with a hearing test. The high frequency didn’t shock me bc 2 years ago when we moved into our town home my husband kept complaining of our neighbors fire alarm beeping. To this day I’ve never heard it- according to my husband.. it still beeps.Lucky him! My ENT gave me Medrol, said it was my allergies and possible ETD, saw fluid in my ears-Zyrtec 24/7 forever even not during allergy season and Flonase daily. It'll go away.
The summer I was fine as always with my allergies. My right ear at times did pop when swallowing but not constant. The ringing never left but I learned to live with the annoying “EEEEEEEEEE” in my ears. This is my new silence. Ugh.
Two weeks ago, my allergies flare up like crazy. Usual October for me. Well both ears feel fluid like. Crackling when swallowing or yawning and post nasal drip after each snap, crackle and pop of my ears. Off to the ENT. He said it’s not sinusitis but allergies, keep my regime. No fluid seen in my ears. He gives me a hearing test.. this is where it gets fun. I have moderate hearing loss in the right ear, mostly high frequency, mild-moderate in the left. My right ear had a collapsed ear drum when I was 21. Healed but left scar tissue. Again, I’m only 36. I panic. My ENT now believes it can be Hydrops.
I go see a Neurotologist in NYC. He says I have TMJ, I grind so badly at night. Made an apt with my dentist for that. He’s very torn on if I just have hereditary hearing loss, it’s been happening over time or if it can be Hydrops or AIED. Unfortunately we don’t have a hearing test to compare. He said someone at my age shouldn’t have this much hearing loss. He wants me to see a rheumatologist who specializes in AIED. That’s my next step. He said I’m a complicated case.
So as of now besides being in a complete panic for days, I’m off my sulfasalazine for 6 weeks (Incase it’s causing my hearing loss and tinnitus), same for the zyrtec. Awaiting to see the rheumatologist.
Current symptoms:
TMJ-pain around my entire right ear back and front. I’ve been massaging, icing and applying heat until I see my dentist. Also trying to stay calm, stress never helps.
Tinnitus that gets heightened with allergies.
Allergies that get relief from the neti pot, after I use it I get the best squeaks and relief from my ears followed again by crazy post nasal drip. Sorry gross.
Occasional popping/crackling in my ears when swallowing.
Occasionally fullness in the right ear. Not often, mostly when my allergies act up.
Hearing loss verified by a hearing test but the test states there’s no fluid in my ears and the pressure is normal- if that’s a thing? My word recognition is 100% left, 95% right.
The hearing loss SHOCKED me that it was that bad. I never noticed. My family and friends are shocked bc just 3 days ago we were out at a busy restaurant with live music and I had zero issues following any conversation.
So my hearing loss seems to be progressive, not sudden.
If anyone had the patience to read my full medical history haha I’d love your input. It’s much better then me googling every symptom and diagnosing myself with every disease.
Thanks in advance!

 

Rich, you are a saint for reading all of this. Very much appreciate your input.
I’m 7 days off ALL meds except Synthroid and my tinnitus is the lowest it’s ever been. I’m not getting excited yet, it’s just one day but I’m surely enjoying sitting in silent rooms as much as I can today! Haha

 

Thanks so much. I definitely will keep you posted. Hopefully I will get some answers. I was suppose to start IUI next month and sadly need to hold off due to this. We’ve been trying to get pregnant for two years. It’s all good though, everything happens in time exactly how it’s suppose too.

 

Hi! All of my allergy testing was negative, I’m going to see the rheumatologist who specializes in AIED and go from there. It’s so frustrating not having answers but hopefully on the road. Thank you for replying!

 

Hi! Thanks for the reply. I’m new to this and a little confused. Can I get a bloodtest for the Epstein bar virus?? I will definitely buy these vitamins and try the regime tomorrow. Can’t hurt.

 

I’m going to start treating tomorrow. I’m also going to ask my rheumatologist to test me for Epstein barr. What starting doses should I do of monolaurin/lomatium and then increase too? You think this may help with the ear pressure+popping/tinnitus and hearing loss? Thank you SO much. I really appreciate your+everyone’s input.

 

I’m about the same amount of time in as well and I break down at least once a week as well. I’m so worried for my future hearing loss and just want answers! I’ve seen two ENTS and a neurotologist as well. It’s hard for my bc I do have TMJ and herniations in all the discs in my neck since I was 13, a car accident. I just have so many factors in the mix for anyone to come up with an answer. Sometimes I feel like I’m just trial and error to the doctors.

 

sorry that reply was for you but forgot to add you!