Does anyone have this type of off balance feeling?

Posted by sylvermoon8 @sylvermoon8, May 5 8:58am

Has anyone experienced a slightly off balance situation? (I’ve worn hearing aids 9 years, I got new hearing aids a month before this problem began) This has been going on for a few months. I am not quite dizzy maybe just a tiny bit now and then. However I feel like I am walking through water at times, or walking on a slightly soft surface. If I walk down the hallway I might take an extra step to the side to get back on track. Occasionally I turn my head quickly and it feels like the inside of my head moved at a different rate than the outside. Also I can go days with no problems and it can last for a short time or most of the day. Sometimes I think my thighs feel a bit weak. Usually when I sit down I feel ok. It is so hard to explain. My PCP referred me to a neurologist, I’m still waiting to get in. I persisted with my ENT she ordered audiology testing which I have this week. She ordered an MRI of my neck too. I can do my daily walk outside so it’s not like I feel like I am going to fall over. It bothers me more with slow movements as you would have walking in your home. Any advice or related experience would be appreciated.

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oldbutstillhere | @oldbutstillhere | May 16 12:39pm

I am reading these posts, and identifying with so many of them. I’m turning 74 this summer, pretty healthy, and have been treated for vertigo once by a PT & never had it again (fingers crossed). I do the slight sideways weaving off and on and have to keep my eyes on where I walk in case of any obstacles. Walking with a shopping cart is easier & I walk the large box stores sometimes just to get more steps. I’ve fallen a couple times - once with the vertigo episode, and another time when I spoke to someone, taking my eyes off the path ahead, and walked right off a curb. Had a broken bone in my hand so that affected me for weeks. I walk my dog nearly every day, at a slow pace, and also try to climb stairs at any opportunity for leg strength. Tinnitus (loud, high pitched) is my Constant Companion! Tried so hard to adapt to hearing aids and finally gave up after a couple years. They did not help the ringing/noises/tinnitus, and made me insanely uncomfortable touching inside my ears. Kinda resigned to living with these issues 😕

sylvermoon8 | @sylvermoon8 | May 16 6:18pm

In reply to @ner "I would get checked for Ménière’s disease." + (show)

I’ve been seeing my ENT had audiology testing a neck MRI waiting for appt to review.

ner | @ner | May 16 7:17pm

In reply to @sylvermoon8 "I’ve been seeing my ENT had audiology testing a neck MRI waiting for appt to review." + (show)

Good luck! Let us know!

sylvermoon8 | @sylvermoon8 | May 16 8:07pm

In reply to @ner "Good luck! Let us know!" + (show)

Thank you!

daveshaw | @daveshaw | May 17 11:27am

I just wanted to reach out to the group regarding their experiences with CI’s. I am 73 and noticing my hearing is getting worse. I can still function with hearing aids but want to know the good and the bad with CI’s.
I have heard some can be made waterproof with accessories but it is a big step.
How long does it take to adapt to them and does anyone regret getting them?
I look forward to hearing from all of you.

pennyr | @pennyr | May 18 9:28am

In reply to @ner "I would get checked for Ménière’s disease." + (show)

It doesn't sound like Meniere's which is true vertigo and absolutely different and lasts hours and completely debilitates you - think unable to walk. Also with Meniere's there are other symptoms. Tinnitus is the obvious one. A feeling of fullness in the ear, the vertigo and hearing loss, usually initially one-sided. I do have Meniere's and I occasionally have those off balance moments, but just ignore them. They may be related to the Meniere's but I would suspect as a secondary symptom to the tinnitus. I don't have true vertigo anymore - it can go into remission and did with me. It is now a very rare occurrence. I now have a cochlear implant on one side, hearing aid on the other. I do think that with the ears and balance being so interconnected that those of us with ear problems are probably not surprised by the balance issues as well.

pennyr | @pennyr | May 18 9:33am

In reply to @daveshaw "I just wanted to reach out to the group regarding their experiences with CI’s. I am..." + (show)

I am 73, was implanted in December on one side, and have written a whole FB blog about the experience. It will walk you through the background to my hearing loss, the assessments, the prep for the op, the op itself, the recovery and rehabilitation. Three months post op I stopped writing the blog because with both ears, no background noise I was hearing at 98% up from the 20s. You can look on FB for From Hearing to Deafness and Back or you can email me at pennyriley at the most common email you can think off. Not sure I can give an address on here or not. I will look for an email from you and can just send you the whole document if you respond.

ner | @ner | May 18 9:45am

In reply to @pennyr "It doesn't sound like Meniere's which is true vertigo and absolutely different and lasts hours and..." + (show)

Thanks, that’s helpful. I knew someone with Menieres whose symptoms were less severe than you’ve described. I think anyone experiencing balance issues or vertigo, as she mentioned, should get checked for it.

daveshaw | @daveshaw | May 18 10:06am

In reply to @pennyr "I am 73, was implanted in December on one side, and have written a whole FB..." + (show)

My email is Dave.shaw4651@gmail.com.
My concerns are as follows:
How noticeable are the CI’s
Do you have a recommendation as to which one to get since there are so many
Have you heard about adding accessories that enable you to swim with them in a pool?
How long does it take after the operation before your hearing comes back?
We’re you able to function with hearing aids before you made the decision to get CI’s
It is a big step and they are starting to make headway on naturally restoring peoples hearing. I would imagine once you decide to go with CI’s those natural solutions would not be available to me.
You have my email address and I look forward to hearing from you.

pennyr | @pennyr | May 18 12:39pm

Specific concerns:
There are three main brands. Two have on the ear and off the ear, AB only has on the ear. Depending on how long your hair is the on the ear are totally invisible in many cases. The off the ear are a small disc on your head. If you are bald they are clearly visible, otherwise not so much. I have on the ear N8 from Cochlear and love them. The service from Cochlear is fantastic; they have videos, classes, and if you have a query, pretty instant replies.

Before I got the CI I really was not able to function unless someone was looking directly at me and making an effort to speak clearly. I have a compatible hearing aid in the other ear and I can hear using it on its own, but it's so much better having both. And if I could only rescue one from a burning building it would be the CI!

Time between the surgery and activation seems to vary from about two weeks to five weeks. Occasionally longer, occasionally shorter. Mine was two weeks. And then you hear right away, but what do you hear is the question! The first week was lots of metallic chatter and little that made sense. A very few people hear words and sentences right away. People adjust at different rates depending, in part, on how much work you put into it, and in part on how long you had been deaf etc. After two weeks I could hear more than I could with the HAs at their best. After three months music is still hard, and really busy loud restaurants are hard, but again much better than with the HAs. And you can get a remote mic which also helps.

My feeling about natural solutions is - I'm 73 and I'm not going to hang around deaf, waiting for them to come up with something better.

I will send you the full text of my blog by email.