I’m a cookie biter, and yes, we are a rare breed. I read somewhere that reverse slope and cookie bite losses combined make up less than five percent of the hearing loss population (but don’t quote me - don’t know how accurate that is). I do know that my loss is rare enough that I have never worked with a professional who had experience fitting a cookie bite loss.
I’m hesitant to share my experiences with you as I am afraid you would find it discouraging. I come from a family with lots of hearing loss (though I’m the only cookie biter); mine was first detected at age eight and first aided at fourteen (I’m thirty six). I wore analog aids until about eight years ago, then switched to digitals. I have always struggled with handling loud sounds when aided, and like you, my communication skills unaided have been really quite good. So, I’ve gone through periods of months and even years of devotedly wearing my aids all the time hoping that I’ll learn to cope with the loud sounds, and then I’ve gone through periods of hardly wearing them at all. At other times, I have not worn them at home, but use them when away from home. I meant to post to your earlier thread about this, but my experience has been that my unaided communication skills decline significantly when I am wearing my aids full-time or part-time. When I go unaided for long periods, my unaided communication improves somewhat. I think my brain just has to figure out what to do and that my speech-reading skills get sharper when I go unaided for long periods. If you can get aids that are programmed correctly to help your loss, I think you will find the most benfit from wearing them as often as possible, but you will feel deafer when you don’t have them on.
My oldest digital aids were Oticon Digifocus, and they made me truly miserable. I don’t believe that the audiologist had a clue about how to adjust them properly. Also, I lived nearly an hour from her office and had a baby and a toddler, so I just couldn’t come in for all the adjustments I needed. I was chronically overwhelmed by kid noise, so those aids mostly lived in my pockets. A little more than a year ago, I bought new aids from America Hears. I believe that they might have been an improvement for me except they are unable to handle my recruitment issues (recruitment means that loud noises are perceived to be extremely, uncomfortably loud). The AH aids are slow (can’t cope with sudden loud noises), so while they made speech clearer than it had been with my older aids, I have been constantly jumping at loud noises. Its made me very edgey, and I feel awful when my children are apologizing for firmly closing a cabinet door because they see me jump - they didn’t do anything wrong! So, I’m trialing new aids again. Currently I’m wearing Phonak Exelia Art micro BTEs with earmolds (I wanted Exelia Art M, but my audi ordered the wrong thing. If I decide to pursue these, we’ll get the M). I’m waiting to try out the new Unitron Passport. So far, the Exelia Arts are handling loud noises better than anything else I’ve tried, but other than that, I am underwhelmed. I know that they need adjustment, and I think there is lots of room for improvement. Unfortunately, my audi (a different one) is still an hour away, and I have four kids to tote along for appointments, three of whom get carsick. So I’m not able to just stop in whenever I want a tweak.
I guess as far as advice goes, I’d say put all your energy into finding a fitter who knows what they are doing. Any dispenser or audiologist can sell you hearing aids, but getting them adjusted properly is another story. Read up on hearing loss and hearing aid technology and ask intelligent questions. Make sure your fitter is comfortable with your trying out multiple hearing aids before you settle on one. With a cookie bite loss, I would advise you not to buy the first aids you try - do some comparing before you make your (very expensive) choice. If you start to get the feeling that the fitter really doesn’t know how to help you, return your aids before your trial period expires and move on to someone else. The fitter is going to be the key to whether you will experience satisfaction with your aids.
Sorry if my experiences are not encouraging. The audiologist I am currently seeing is not a fitting genius, but she is the best I’ve been able to find, and she is treating my fitting as a partnership. She turns the computer monitor toward me and asks me what I want her to do. I would rather that she knew herself what to do, but this is the next best thing. She is also supportive of my trying out several hearing aids before I decide, and she has equipment to perform REM testing. She seems to lack confidence that REM will be of any help, but I want her to do it anyway - am hoping we will get closer to getting it right.
Best of luck to you as you navigate this new terrain!