waiting for diagnosis

Long post alert...I have been suffering with vertigo since early May 2020. I went to my ENT in June for the epley maneuvers and they did not work. I went back in July when I could not take it any longer, this time I was vertigo free for 2 weeks. He diagnosed me with BPPV but concerned heading towards Menieres. Fast forward a few weeks to August 1st. I felt a weird sensation while sleeping and I knew the vertigo was back. When I woke up that day, I instantly knew something was terribly wrong. The spinning, the dizziness, the throwing up, the pressure in my head and ears, the ringing, the feeling of fullness in both ears. It also felt like I had fluid leaking out but nothing was there. I could not walk 6 inches without help, I had to hold onto walls, door frames, people to get around the house. Drove home from Michigan to NC that morning. I slept 10 out of the 12 hours and the spinning was finally gone, but not the other symptoms.

As of August 1, the symptoms were in both ears. The vertigo was only in my right ear and then it went to my left ear. I have not had a vertigo attack since September 1.

I called my ENT for another appointment on September 1, I was without health insurance for the month of August. I have had 5 of those attacks (like I had August 1) during the month of August and the only way to get through them is to sleep. Everyday I have the ringing or feeling of fullness in both ears. I was sent for an MRI on September 3 to rule out inner ear tumors and MS, clear on both. I have vestibular testing in October. I saw an inner ear ENT specialist yesterday and left feeling defeated, he did not even look at my MRI or report from it. He doubted it could be Meniere's because he has never seen it in both ears during his career. My symptoms have been in both ears since August 1st. His exam consisted of asking me my symptoms and pressing on my sinuses to see if they hurt. That was it. I am now waiting for a referral to go through with my primary doctor to see a specialist at Duke Medical.

Has anyone had the constant ringing with ear fullness without the daily vertigo? A few times it feels like my ears itch or they are being stabbed. I am worried that an attack will show up because of how many I had in August.

On a side note, the MRI did show a tumor on my pituitary gland that I now need to see an endocronologist for and the neurosurgeon is going to repeat the MRI in 6 months. Two completely separate issues and both sets of drs are claiming "not it".

Any help/direction to look into this is appreciated.

Thank you all,
Jen

 

Twodogs....thank you for your reply. The specialist I will be seeing at Duke is a specialist in neurotology, so hopefully he will have some answers for me. The ringing in my ears has been 24/7 since August 1. It can be creek quiet to church bell loud. It is starting to wear me down. Not sure what other testing there is after the vestibular testing. Taking it one day at a time and this week has been a good week minus the ringing. I am a powerlifter and the thought of not being able to keep up my routine is not a happy thought. Once again, thank you for the reply and once I have more answers I will post them here. Thanks....Jen

 

Yellowboy...I will be seeing Dr. Calhoun Cunningham. I am hoping for a call from their office by Wednesday of next week to schedule. The ringing is 24/7 and today I have the sensation of fluid leaking out and fullness in both ears. I hope you are getting the care you need. Hugs.

Jimii...thank you for your reply. I thought I was going crazy to think I was the only one with 24/7 ringing. My family is trying their best, but they don’t get it. They don’t see how the ringing can be non stop for this amount of time. The dr I saw this week wants me on prednisone for 1 week and I can’t until I’ve seen my endocrinologist for my tumor on my pituitary gland so I do not mess up her blood work. It is a complete mess right now with all the docs and none of them seeing me as one patient with multiple issues.

 

Are you happy with the level of care you are receiving? Would you recommend him?

Thanks,
Jen

 

I can’t imagine what you’ve been through, I am so sorry. I have no idea what is going on with me and I hope to have some answers soon. My vertigo has not lasted longer than 3-4 hours at a time. My last episode was September 1 and the Epley is still working. It’s all the other stuff that has me concerned, ringing, pressure, fullness. I’m a powerlifter and I am so careful when I train daily. If I go for big weights, I will have a spotter. Cannot imagine not being able to do this everyday, it’s who I am. Hugs

 

Seeing Dr. C this Friday, October 2. I really did not think I’d get in until next year.

 

Update...I saw Dr. Cunningham at Duke Medical yesterday. He said it is either Ménière’s or Vestibular Migraines. I have to avoid certain foods for the next month and take magnesium daily to see if he can rule out the VM. Going back to see him in early December.

 

He wants to see my results to my vestibular testing on October 12 and see if avoiding certain foods help. He said it’s hard to diagnose because the symptoms for both are the same. My ringing is in full swing. Hearing test came back with a good report, no hearing loss. Not sure if he grasped my ringing is non stop since August 1. Had a few weird episodes this week and told him about them. Could really be either the MD or VM. He has his work cut out for him.
How are you doing this week? Any better at all?

 

So sorry to hear that. We are all here for you.
For anyone who is reading this, can you please describe one of your attacks for me? I know everyone is different, looking to see if any similarities with what I have been experiencing.
Thank you, Jen