Hearing Loss

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I'm new here!

Hi,

I'm here becaause my daughter has been suffering FND symptoms for 2 years. Initially numbness and tingling, but symtoms soon moved on to blurred vision, double vision and then blindness, hearing loss, mutism and paralysis of limbs.

FnnD bouts have lasted seconds, minutes, hours, days and even upto 7 months before recovery

One thing that is most common is that smy daughter will recover and go to bed symptom free, but if a new symptom or bout of symptoms occurs it does so when she wakes in the morning.

We are told FND occurs when her stress bucket overfills, because of too much stimulus, but this seems to mostly happen when she's asleep, so is able to cope consciously, but it all seems to fall apart in her subconscious.

Has anyone experienced this?

Looking to widen our awareness of FND, as we currently feel very isolated and even with the help of a pretty good Paediatric Neurology Psychologist, we still feel overwhelming underinformed about the world of FND.

#MightyTogether

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What is it like to lose your hearing as an adult?

What is it like to lose your hearing as an adult? Not older, but in your 30’s or 40’s?

You grow up hearing fine. Communicating in the language you were raised with (or others you learned as you grew up.) Then all of a sudden you notice you are having a harder time hearing others. Sounds around you are more muffled and difficult to understand. So you go to an audiologist and you are told that you have hearing loss. Not minor but significant enough to need a hearing aid. But what if you don’t want one? Most insurance for adults does not cover a hearing aid. They don’t consider a hearing aid a necessity. Hearing is a necessity but the equipment needed to hear when you lose your hearing is not? Where does that leave you?

The cost out of pocket for a hearing aid can range from $300 to over $1500 or more per ear depending on your needs and where you obtain them. If you are lucky you have benefits to cover the partial cost, but even then that could be hundreds of dollars or more. Most adults cannot afford that cost.

What about the ability to learn sign language to help? That’s a great thought but finding somewhere to learn it is the trick. Most hospitals offer interpreters for those who are already Deaf, but not classes to learn for those who are going or are Deaf. What about adults who prefer signing over hearing aids? What is available for them? Most colleges offer sign language, but the cost could be overwhelming and the classes hard to get into as younger students take the class for their chosen language.

I started noticing hearing loss around 2018-2019. I struggled with hearing someone talk to me in their normal tone from only 10 feet away in a quiet room. Then it progressed to struggling when someone had their back to me in a quiet room, to pinpointing the voice of someone talking to me in a crowded room. In public places crowds are inevitable. Even outdoors, the voices carry to a point where hearing people even next to me became a challenge. So I got my hearing tested initially in 2019 and there was some hearing loss, but not significant enough to warrant assistance. So I let it go. By 2021 it was noticeably worse. Something had to be done.

I did another hearing test and at that point I was told it was significant enough to need a hearing aid in one ear, but possibly in both. I was 44 years old. That was not something you want to hear at that age. I did not want a hearing aid. Yes it would help, yes I understood it was a necessity, especially in my line of work as a paraeducator working with students who are moderate to severely disabled. So I got one. The cost was a lot for a single parent to take but my insurance did NOT cover it. I, thankfully, got a discount thanks to union benefits but it was still well over $1,000.

So what was my next step? Preferably I would rather use sign language. I knew some thanks to the classes I took in college but that had been 20 years prior and the sign I knew from teaching my son sign as an infant wasn’t enough for communication so I was stuck using the hearing aid. It was small, discreet and blended in with my hair. But still, I had to wear one. But I noticed how much louder my job was with it on and turned on, so I stopped turning it on at work and just hoped for the best.

Then came students who were non-verbal that used AAC (augmentative and alternative communication) and who signed as well. I was finally able to put my signing to use again. Then I learned more and more. I realized how much I preferred it but not many people at work or even at home knew it. My daughter understood it, which helped in public for me to communicate, but she responded verbally due to her struggling to be able to sign.

Now to today, almost 6 years after I discovered my hearing loss. I wear a hearing aid in one ear, though I rarely turn it on but I wear it. I now work in a classroom with a teacher who understands my hearing loss and another staff member within my class has hearing loss as well. Where I am a 1:1 with a student who wears a Cochlear Implant and signs. So I can work on signing and learning more and more and I can communicate with my student verbally and in sign language. But that doesn’t help me outside of work. I’m expected to hear, which I’m still doing but the hearing loss is getting more and more noticeable. Enough that my bluetooth while talking on the phone is at full blast and it’s still a struggle. It’s enough that I use closed captioning when I Facetime on my phone or watch a tv show or movies on my computer. I am getting my hearing retested in a couple months (the soonest I could get an appointment.) I’m expecting more loss in my right ear as my left one currently has the most loss. Then will come the decision. Do I get another hearing aid or let it go? Do I want the expense of the hearing aid? Or do I find a resource for learning to sign and become more fluent than I currently am?

So I have some choices to make. Do I just decide to accept that I, as an adult with 2 kids (15 and 20) am losing my hearing and get another hearing aid OR do I accept what is happening but refuse to use another hearing aid and see how I can function without one? Not many people in my life, besides some people at my job, both staff and students plus my daughter (20) know how to sign. Others, namely my boyfriend, are trying to learn to make things easier on me. Then, finding somewhere that I can learn to become more fluent is the trick. There are online classes, but very few in person ones. Sure, I could learn easily online but I would much prefer somewhere closer to home to learn in person.

All I know is, I am an adult who is losing their hearing and struggling with how to cope. There are decisions I have to make and figuring out the right one for me is the trick.

#HardOfHearing #SignLanguage #adultswithautismandadhd

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Recognizing Stress Symptoms

I have severe depression and C-PTSD, and I have been going through extreme levels of stress, and I am only recognizing it now. Being a full-time caregiver for my mom’s cancer treatment was rough, and I made it through without the stress I feel today. Being a caregiver to someone post-chemo and in remission should be less stressful, but it isn’t. Post chemo, my mom is realizing that she is missing her memories of the ordeal.

The first month after chemo, she slept and didn’t want to eat anything or get out of bed. I brought her meals, but she kept forgetting to eat or didn’t want food. I had to monitor her blood sugar to keep it from dropping too low. There were many times I had to stand there and tell her to eat repeatedly. Chemo pain is strange because it lasts beyond treatment. Her pain was managed with Lyrica and a narcotic for breakthrough pain. During chemo, I kept track of her narcotic consumption but only limited her to the maximum dosage per day. Post-chemo, the doctor wanted to reduce the narcotics slowly, so I had to begin the process of restricting those pills. Towards the end of the first month, she began to ask me to bring her specific meals again. Her memory was foggy, and she stumbled, grasping for words. Her cognitive abilities were impaired due to chemotherapy, but I could see improvement from the last treatment. A big scare came one night when she fell out of bed while dreaming despite a bedrail to prevent falls. She must have hit her knee on something that left a bruise on the way down. An X-ray found nothing broken or dislocated, but it made walking painful, so I had to increase her narcotics until the pain passed. My focus on getting her out of bed each day had to wait a bit longer.

In month two, her struggle with words and names became less frequent, and her cognitive ability improved significantly. As her cognitive ability improved, she noticed her memory had gaps, which is normal and can be scary. Her knee recovered, but sleep came with a new symptom of restless legs due to the chemo-induced neuropathy, so she was often unable to sleep without narcotics, which I dispensed sparingly, reminding her the doctor wasn’t going to continue the prescription indefinitely. Broken sleep limited her energy levels and willingness to get up and move around. In talking with her doctors, the key to getting stronger is getting her moving and out of bed. Towards the end of the second month, I stopped checking in with her early in the morning for breakfast and waited until mid-morning to encourage her to get out of bed for breakfast. Towards the end of the month, she was getting up at least two days a week.

The third month was scary and stressful; my mom developed a severe cough, which became pneumonia. After two weeks of antibiotics, her chest had cleared. Surprisingly, the pneumonia and cough had her sleep into the afternoon before getting up, but she wasn’t stuck in bed. I developed flu-like symptoms after a series of vaccines that lasted for a week, and it was a struggle to keep up with mom’s needs, but I forced myself to take care of both of us. In the last week of month three, I encountered an allergic reaction that made my vision blurry to the point I was only able to make out vague shapes. My doctor prescribed eye drops that worked almost instantly but only lasted about four hours. The doctor didn’t want me dosing more than two times a day, so I had to plan my days and nights accordingly. Two weeks later, my eyes were normal again. And my annual visit to the eye doctor confirmed it.

Four months post-chemo, and my mom is doing much better. She continues to avoid walking and standing unless necessary. So, I have been encouraging her to do more, using my blindness as an excuse. My mom’s doctors are noticing her cognitive improvements and have encouraged her to exercise and gain strength again so she can take her driver's license exam to resume driving. I have waited months for an audiologist appointment, and it confirmed my hearing loss and need for hearing aids.

Through all of this, my best friend went into the hospital due to appendicitis, and he has waited months to schedule the surgery due to his foot infection. His foot infection didn’t respond to treatment, so he had his toes amputated, and he is living in a nursing home undergoing rehabilitation to learn how to walk with a prosthetic. So, both of us are going through crazy times with minimal support, and we are both struggling.

I have been waiting for a therapist who accepts my insurance and will take new patients for more than two years. I believe a therapist might have been able to help me manage my stress levels. I have been visiting open group therapy sessions, but with C-PTSD and extreme trust issues, my ability to participate is limited.

#PTSD #MajorDepressiveDisorder #Caregiving #Stress

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An interesting development

#Doctors #Scoliosis Hi. How is everyone today? Before we officially go into fall I would like to share a interesting development that has quietly taken shape. I was looking through my test results & noticed one that was tucked in there. My spinal scans from the spinal specialist & whats hypocritical of him is when he told my mom that everything is normal. Yet the report said otherwise. They noted a dextroscoliosis of 26 degrees in my neck, a 13 degree levoscoliosis in my upper spine & a marked coronal imbalance measuring 18.1cm or 7 inches. So what does this mean? Well, a few things it means a rare form scoliosis called cervicothoraric scoliosis in combination with degenerative signs in the cervix & a laryngocele with other findings on brain scan this would point to a little known condition called klippel feil syndrome. BUT WAIT! there is one very profound problem nothing in my genetics mentions any gene related to klippel feil. however, this caught my attention. There is a locus on 8p22.2 that is known to cause laryngeal malformation. This condition is autosomal dominant. My mom has complained about hearing loss & a stooped posture in her neck for years that isn't being cured by chiropractics. Now I'm starting to wonder if my degenerative disc disease of the neck & these new findings will point us toward a new diagnosis. Unless it's just a spinal injury but considering the development of a zenkers diverticulum & prior pinched nerve causing dizziness (radiculopathy). It's also associated with jaw disorders like micrognathia of which I have.

Anyways, everyone. . .have a great fall & wonderful new year. ;)

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I'm new here!

Hi, my name is gracesusan. I'm here because I have hearing loss with tinnitus and I'm looking for more information for dealing with these issues. I will be getting hearing aids soon and am looking for information to help learning to navigate that process.

#MightyTogether

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Health Update!

The last six months have been constant battles with my old primary, but finally got two liver ultrasound and confirmed liver disease. About a month and half ago, I was having severe liver pain, throwing up, sudden confusion, lightheaded, and could barely hold myself up. I couldn’t eat anything but soup for days and it took days for the confusion and to finally feel normal again. I ended up going to urgent care and they said the next time it happens to go straight to the emergency room and that I need to see a liver specialist. Finally have an appointment with a new primary to get another ultrasound and blood work done. Going to see pain management and discuss new symptoms with my Fibromyalgia and more likely will be getting a brain mri and CT scan to see if anything has change or damage has been done to the brain and to check for Dystonia. Going to be going soon to finally fix my ears and going ti be getting the money up to get my laparoscopy to confirm whether or not I have Endometriosis and to burn anything out that’s needs to be burned out. And will be getting the test done to check for lupus. #ChronicIllness #Fibromyalgia #ChronicPain #Dystonia #Lupus #Spoonie #Endometriosis #LiverDisease #ChronicFatigue #HearingLoss

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I'm new here!

I have been sick for 27 months after a fall and hitting my head. After taking the Covid 19 shots a few weeks before, my symptoms became more pronounced. I live with nausea, pain, unbalance now, eye issues and hearing loss as well as pressure between my eyes. I suffer with chronic constipation, back, leg, hip and quite honestly all over pain. If I get in a pool and get out, I feel like I will faint. My weight and blood pressure are all over the place. I have other issues since the fall and can't get my strength back. I can't get Doctors to even listen to me. Had a Myringotomy and it made my head pressure worse. Meds tend to make it worse. Hard to get a physician to take time to listen and proceed to send me to the right person for help. No one looks at the entire picture anymore. I am cognitively in great shape, it is the physical body that is hurting. My mental status is very stressed right now, after going on three years of this, it takes a toll on your wellbeing. I don't give up, sent me to a Psych and he told my Doctor, "she does not have mental issues, it is physical and will rectify itself, when she can get a diagnosis to fix the problem or at least deal with it." " She is very alert and smart and strong!" I move forward with this hope and knowing something is wrong and can be fixed. I just need help finding the right person. My sleep schedule is up at 2 a.m., sick on my stomach, pressure between my eyes can't focus at all for hours. Weak, bladder issues just recently, sore legs, arms, back, pelvic, stomach and bowel area, leg cramps nightly. Inner ear and balance issues. So many things, I do not know what or where to turn. I have seen Gastro's, Cardiologist, ENT, Allergist, Psych, Neurologist who did nothing but make me walk and tap my knees. Integrative Internist, charged a lot, did nothing. Eye Doctors, had leg nerve conduction study, MRI on my abdomen, head, hips. Orthopedics Doctors, just had a hip replacement. Hands swell now, do not know why. Vascular guy, massage therapist, Chiropractor. A retired Geneticist said he thought I had Autonomic Nerve dysfunction all along. Had a detached Retina caused from the fall and Concussion at the time and two Cataract surgeries since then. No one has even attempted to look into the root cause. My body temp is all over the place. I take no meds other thanTylenol, Advil , sinus by Vicks. I am getting worse on a daily basis. I was physically fit until this happened, now I push myself to get out of bed. I am a fighter and will not quit until someone, somewhere helps me. I will try anything to get my old self back. I am or was, a Watercolorist, hands don't work, but my Brain still does! Vagus nerve damage possibly from the original fall, but no help whatsoever. Can't live like this, it is awful. I cry daily! I help so many people and now I need help.it has ruined my life, thanks for listening. I am so tired!