New Here + Background

Hi everyone,

I’ll start off by saying that I haven’t been diagnosed with Merniere’s or anything else yet, but wanted to share my details here. I’m thinking it likely is MD or something similar.

When I was young (3-5 yo) I had frequent ear infections. Because of this I had tubes put in both of my ears. I’m not sure if this is even relevant, but figured I’d share this detail.

I’m a 26 year old male. My first symptoms started around 6 months ago in April, which was mostly just a feeling of ear fullness in my right ear. I’ve struggled with migraines on and off for years. They were bad a couple of years ago before I had my wisdom teeth removed, therefore I did have them removed, and they seemed to have subsided up until this year.

I’ve never had issues with allergies until last fall when I seemed to have developed a ragweed allergy. This caused a lot of runny nose and headaches. Once again not sure if it’s relevant, but figured I’d share.

Anyways, ever since this April when the ear fullness / migraines started things seem to have been getting worse. I went to the immediate care that month, they assumed it was an ear infection and eustachian tube dysfunction (my right ear does click when I talk a lot of the time, pretty loudly too) so they prescribed me prednisone and an antibiotic. She had me do the maneuver where you plug your nose and blow to pop your ears, which offered temporary relief (about 3 seconds) but otherwise doesn’t work, and actually seems to make the pain worse minutes later. Neither of the prednisone nor antibiotics worked. They didn’t help at all for the ear fullness / pain.

A little while after this, I was driving one morning pretty early after having little sleep (maybe 4 hours) and had a scary episode. While driving, it felt like I was in a boat or something, and I was unable to process my positioning on the road in relation to the moving cars. I had to pull over several times. At this point I was kind of freaking out, and my anxiety went through the roof. I thought maybe I needed something to eat, so I bought some beef jerky and orange juice from a gas station but it didn’t seem to help any. I spent the rest of the day freaked out and scared out of my mind that something was seriously wrong. I visited a grocery store shortly after and it was like I couldn’t process my positioning in the isles, and people walking around me made me feel like I was going to just fall over. It wasn’t a light headed feeling that you get if you’re about to pass out. Don’t really know how to describe it. But this lasted for about a week until I started actively walking again (to push through it and ‘retrain’ my brain) and the balance issues seemed to have mostly subsided. I still haven’t driven on interstates / highways since then in fear that it will happen again.

I read online that perhaps it could be gluten or some other environmental factor causing inflammation in my ear canal. So I (mostly) cut out gluten, simple sugars, and most dairy aside from greek yogurt / kefir. I also started Flonase nasal spray and taking Claritin everyday. This honestly seemed to have helped to an extent. My migraines seemed to have gone away at least, and ear fullness / pressure largely subsided. I don’t have any other signs of Celiac’s disease like rashes or severe bloating or anything. I thought maybe it was coincidental so I reverted back to eating gluten but still cooking a lot of meals at home, just less strict on being gluten free. Since then the ear fullness / pain and migraines have returned and they’re bad again. The “vertigo” (not classic vertigo like the room is spinning) still hasn’t really returned. But I did start getting a high-pitched ringing tinnitus in my right ear about a month or two ago, which I’ve never really had before until now.

I found John of Ohio’s regimen and have been following some of that. 2,000 mg of l-lysine, a multivitamin, and 2,000-4,000 iu of vitamin D everyday for the past month. Hasn’t made a difference so far. In addition I’ve been taking about 500mg tylenol everyday for the headaches. I’m 130-140lbs and have heard a that taking a lot of l-lysine could cause liver issues, so I don’t take the full 3,000 mg. Although maybe I should. To add and for full transparency, I’ve been drinking a full pot of coffee everyday for the past 10 years, and in addition I do smoke cigarettes. I know both of these surely don’t help, but they’ve never given me issues until now.

I just recently got health insurance (turned 26, US based) and have no idea what to do. My ear fullness / pressure and migraines have been so bad lately and it seems like I’m getting hearing loss in my right ear. Today I was trying to find a primary care doctor to go to, but nobody’s accepting new patients. I called around everywhere within network to schedule directly with an ENT doctor but nobody’s accepting new patients until early Dec. Honestly I cannot wait that long, this ear fullness and pain is driving me absolutely insane.

The only things that seem to work for the acute pain are decongestants and tylenol to an extent, and I have noticed that my right nostril / nasal cavity (same side as the ear pain) seems to be clogged more often than my left nostril. Claritin seems to help a little. That’s why I was thinking perhaps it’s mold from my ducts, crawlspace, or AC unit. I cleaned most of the house and it hasn’t made a difference. Haven’t cleaned the AC unit or ducts though. I’m inside most of the time, and fortunately have saved enough money to live off of for a while, but I’m starting want to get a job to bring in cashflow again. But with how debilitating the headaches, ear pain, and balance issues can be (in addition to them being completely random, especially the balance issue), I’m scared it will happen often and I’ll get fired or something. Although days I’m out of the house and moving for most of the day, seem to have the issues less than when I’m inside all day. Perhaps posture plays a role too? I have no idea.

Just wanted to share my story and all the details that I could. If anyone has any advice I would love to hear it. I’d love to hear other people’s stories as well. Thank you all!