1. < Hearing Loss

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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pennyr | @pennyr | May 18 12:47pm
In reply to @ner "Thanks, that’s helpful. I knew someone with Menieres whose symptoms were less severe than you’ve described...." + (show)
@ner

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.

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To be diagnosed with Meniere's they generally expect you to have three of the four classic symptoms. If you only have two they're generally very on the fence about it and with only one you wouldn't get a diagnosis. Of course there's no definitive diagnosis for it. And a diagnosis really isn't that helpful anyway as they can still only treat some of the symptoms. The tinnitus can't be treated, there are various options for vertigo and obviously HAs or eventually CIs for hearing. I never had the fullness feeling except occasionally.

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skiebunny | @skiebunny | May 18 12:52pm

Are you on medicines that can cause dizzy or lightheaded feelings? I have similar feelings, but, know meds do that to me. Blood pressure ones, especially!
I do wear hearing aids and glasses. Both contribute to the problem! Good luck!

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sylvermoon8 | @sylvermoon8 | May 18 1:53pm
In reply to @skiebunny "Are you on medicines that can cause dizzy or lightheaded feelings? I have similar feelings, but,..." + (show)
@skiebunny

Are you on medicines that can cause dizzy or lightheaded feelings? I have similar feelings, but, know meds do that to me. Blood pressure ones, especially!
I do wear hearing aids and glasses. Both contribute to the problem! Good luck!

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No medications. Thank you!

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mikepa | @mikepa | May 19 8:59am
In reply to @pennyr "Specific concerns: There are three main brands. Two have on the ear and off the ear,..." + (show)
@pennyr

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.

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Dave and Penny, I am going through the same research process as Dave. Was approved for CI in left ear a month ago and have been talking to all of my contacts at HLAA (about 20 have CI's) to get as much info as possible. All are happy they did it. My left ear sounds like yours Penny - about 25% word recognition down from 55% a year before. Right ear is at 55% now. Getting left ear to the 90th% range would be amazing. I have a surgeon lined up at Penn in August but my final research is to talk to all 3 CI mfgrs. at the HLAA Convention. I'm leaning to AB because I have had Phonak aids and Roger mics foe almost 10 years but I want to keep an open mind.
Penny would you mind emailing me with your blog as well? I would love to read it. mikemiles_19087@yahoo.com
Thanks so much. This is why I love this forum.
Mike

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pennyr | @pennyr | May 19 11:01am

I will email you the blog - but I think you found it on FB, also.

A couple of points; 1) Not all phonic hearing aids are compatible with AB CIs. Finding out whether yours is, might help the decision making. 2) AB has the worst record of recalls. Not all hospitals will still implant them so find out if your surgeon does for sure. 3) While you may have the Rogers pen already, if you choose Cochlear you will get a free remote mic and other goodies. I'm not sure where AB is on that.

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sylvermoon8 | @sylvermoon8 | May 19 12:10pm
In reply to @mikepa "Dave and Penny, I am going through the same research process as Dave. Was approved for..." + (show)
@mikepa

Dave and Penny, I am going through the same research process as Dave. Was approved for CI in left ear a month ago and have been talking to all of my contacts at HLAA (about 20 have CI's) to get as much info as possible. All are happy they did it. My left ear sounds like yours Penny - about 25% word recognition down from 55% a year before. Right ear is at 55% now. Getting left ear to the 90th% range would be amazing. I have a surgeon lined up at Penn in August but my final research is to talk to all 3 CI mfgrs. at the HLAA Convention. I'm leaning to AB because I have had Phonak aids and Roger mics foe almost 10 years but I want to keep an open mind.
Penny would you mind emailing me with your blog as well? I would love to read it. mikemiles_19087@yahoo.com
Thanks so much. This is why I love this forum.
Mike

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What does CI stand for please?

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mikepa | @mikepa | May 20 8:38am
In reply to @pennyr "I will email you the blog - but I think you found it on FB, also...." + (show)
@pennyr

I will email you the blog - but I think you found it on FB, also.

A couple of points; 1) Not all phonic hearing aids are compatible with AB CIs. Finding out whether yours is, might help the decision making. 2) AB has the worst record of recalls. Not all hospitals will still implant them so find out if your surgeon does for sure. 3) While you may have the Rogers pen already, if you choose Cochlear you will get a free remote mic and other goodies. I'm not sure where AB is on that.

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Penny, thank you for emailing me the blog. I did find the Facebook post but sometimes struggle with Facebook.

As for AB, it was the 1at CI I researched because of my Phonak history. When you get a AB CI they also give you a compatible Phonak hearing aid for the other ear. Maybe that changed since you got yours. And my Roger and Partner mics will work with them. If they didn't, that would be a reason for me to not consider AB as my assistive listening systems are my life. I couldn't keep doing everything I enjoy without them.

Now that I've researched AB so much and met a lot of people with AB, I am moving on to Cochlear and Med El so that when I get to the HLAA convention and meet the reps I will be well versed with all 3. As to surgery, the surgeon will use any of the 3 and didn't have one they thought would be best for me.

I will read the rest of your blog this week. I think it's great you journaled the process from beginning to end for others going through this process. Take care.

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TMM | @tmragain | May 21 6:47pm

Do you fly often? Did the symptoms start after flying? You could have a perilymph fistula. You can Google the symptoms. I’m in a support group on FB for Perilymph Fistula although mine was from injury, I’ve read a lot of people have developed them after flying though.

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