Dealing with profound hearing loss and other diseases

I'm new to profound loss, although I've had severe loss in one ear for over 30 years. I also have low kidney function and am too old for a transplant, so am being very careful about diet--to avoid dialysis and a much stricter diet (husband's a transplantee, so we've been there). The "other diseases" I'm dealing with on a daily basis are my husband's brittle diabetes and total refusal to do PT following three back surgeries.

Big problem for me is total exhaustion, due to the new struggle to hear. I'm tired all the time, which isn't normal for me. Some of the problem may be depression due to his refusal to try to get better/have less pain, but that was present before the recent severe downturn in my hearing. I am getting better at just sitting quietly, not even trying to follow conversations during meetings, group lunches, etc. However, a three-hour technical meeting finishes me for the rest of the day.

I understand how distressed you must feel. It must have felt like a hole opened under your feet or like a ton of bricks landed on you! I’m sorry you’re dealing with so much joangela, it is a lot to hear all at one time. I received some advice from a gifted doctor and hope sharing it with you will help.
I have had two kidney transplants and Atrial Fibrillation. I have osteoarthritis. Meds for my heart damaged my thyroid and caused osteopenia. The list goes on... Meds given me from a transplant rejection episode 28 years ago were what started progressive nerve damage leading to severe/profound hearing loss. I am going to have a cochlear implant soon.
So, how do I deal with it all? That doctor, 50 years ago told me, “If you live your life as if you are healthy; plan far into the future, be active (even when you don’t want to or don’t feel like it, do what you can), play, make dreams and set goals knowing you will accomplish them. If you do this, you will hold what health you have over far more years than if you succumb to despair about the loss of your kidneys.” I took his words to heart. At that point, I had just been told that I would need dialysis or a transplant soon. I thought I was going to die just as quickly. So, I began to plan and live into the future, went to college, started a family... it was over ten years before I finally needed that kidney transplant and 21 years before dialysis took me into a chair hooked up to machines three days a week. And a year later, I had another kidney transplant.
At each diagnosis I’ve subsequently received, I’ve reminded myself of Dr. Hopper’s words and persisted making plans, living into the future and staying as active as I can given my health.
Joangela, don’t let these diagnoses, and the pain that accompanies them, keep you from dreaming into the future and being as active as you can manage, don’t let them keep you from eating the best quality foods (organic) and exploring alternative medicine for relief. Meditation, gentle yoga and organic foods, as possible, are mainstays for me, I love massage for pain and take pain meds at the first hint that I’ll need them (they’re more effective that way). I listen to my doctors and weigh what they say carefully. You could do these things as well. Many blessings.

Hearing loss/ osteoporosis/ arthritis / cancer survivor. Tough but we push on- cannot afford to replace 14 year old hearing aids so when they die- that’s it. I travel locally/ wandering trip. People are shocked at that buts it’s fun. Out there Moving all the time lessons the pain. It is hard. Keeping up to date is important- in your case - lots of advances in Ms . Please stay on top of it- sorry about the diagnosis . It’s tough. Take care.

@joangela, this is a great discussion to have started. One of the "benefits" of Mayo Clinic Connect is that there are groups for many other conditions as well as hearing loss, should you wish to connect with others. Here is a link to the Group Directory: https://connect.mayoclinic.org/groups/

Tip: If you follow multiple groups, the number of email notifications can be overwhelming. We are currently in the process of refining the notification system. At the moment you have the option to follow a group and choose between:
- Email me when new posts appear and include in my email digest
- Include messages in my email digest only (daily summary)

For those groups that you don't want to miss a single post, I suggest the former. For those that you want to stay informed about but not necessary get an email for every post, I suggest the later.

Here are some groups and discussions for the conditions mentioned in this thread so far:
- Group > Brain & Nervous System https://connect.mayoclinic.org/group/brain-and-nerve-diseases/
- Brain & Nervous System > Multiple Sclerosis (MS) - please introduce yourself https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/
- Brain & Nervous System > Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
- Brain & Nervous System > Trigeminal neuritis/neuralgia treatment: https://connect.mayoclinic.org/discussion/trigeminal-neuritisneuralgia-treatment/

- Group > Bones, Joints & Muscles https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
There are multiple discussions about osteoporosis in this group. Here are a few:
- Bones, Joints & Muscles > Prolia treatment for osteoporosis https://connect.mayoclinic.org/discussion/prolix-treatment-for-osteoporosis/
- Bones, Joints & Muscles > Osteoporosis https://connect.mayoclinic.org/discussion/osteoporosis-20678f/
- Bones, Joints & Muscles > Calcium and Vitamin D for bone density https://connect.mayoclinic.org/discussion/calcium-and-vitamin-d-for-bone-density/

- Group > Kidney & Bladder https://connect.mayoclinic.org/group/kidney-conditions/

- Group > Transplants https://connect.mayoclinic.org/group/transplants/

- Group > Heart Rhythm Conditions https://connect.mayoclinic.org/group/heart-rhythm-conditions/

If you're looking to connect with others on a specific condition, you can use the search on this site or message me. Happy to connect you.

Is there a group for people experiencing hearing loss. If there is, how do I join?

@billpo
One of the "benefits" of Mayo Clinic Connect consists of groups for many health conditions, including hearing loss. Here is a link to the Group Directory where you can register: https://connect.mayoclinic.org/groups/

I welcome you to the hearing loss support group on MCC. It's a great place to learn from shared experiences on a variety of topics related to hearing loss. Feel free to ask questions.

Julieo4 Hearing Loss Support Group Mentor

I believe my hearing loss is related to Covid. After “recovering” from a three week bout with Covid, I took a six hour plane flight to Hawaii. My hearing has never been the same after two and a half years. I have other issues too, but will stick to my ears for this discussion.
When I got off the plane my ears felt clogged and still pressurized from the flight. I figured it would pass but it has not.

When I returned home I started looking for help. It took awhile to get in to see an ENT and have testing. It was treated like an age related sensorial hearing loss and I was put into hearing aids. I still had the pressure “clogged” feeling, but I could hear somewhat better. Overtime, I developed tinnitus and hyperacusis which makes it hard to adjust the aids without making the hyperacusis worse.

I’m wondering if anyone has a similar experience and has found help. I have had balloon inflation of my eustachian tubes, which did not help, and my hearing is gradually getting worse. I have seen multiple ENTs and none have different ideas for treatment. It has also been hard to find an Audiologist that is very knowledgeable. It seems most are primarily hearing aid sales people. I wear Signia aids, and tried an upgrade to Oticon that I returned, as there was no improvement.

Yours is an inspiring story and I admire you for the strength you have shown in facing very challenging procedures.