Meet...Darth Vader! And some dizziness after activation...?

[NathalieM]

Hey everyone,

So I've been activated for just over a week and it's been a ride! I can make out quite a bit (yaye!) while acquainting myself to this new character, Darth Vader voice

My hearing loss is the typical profound loss in the high frequencies (i.e. ski-slope hearing loss) which has been a life-long prognosis and the other remaining frequencies just gradually  receded these past couple of years. I don't recall much dizziness in my first implant (18 years ago) so I'm quite disconcerted with the onset of mild dizziness after activation - it started about 6 days after activating. My 4 programs from the activation were strictly incremental volume increases set to auto adjusting, so I just switched program every 2-3 days to those gradual increments. I just had an adjustment appointment yesterday and was at Program 4. The volume is now higher but with a more uniform balance across all frequencies after the adjustments (more to come - this is just a start).

The dizziness isn't so overwhelming that I trip myself or hold onto walls but it definitely slows me down (I tend to walk fast with enthusiasm & energy in just about everything). It's draining and the first few days of those dizziness, I would have a 1-2 hour nap...this isn't typical for me and I feel like I've aged 10 years in that time span - even my husband commented on how I walked uneven while we were out shopping for a bit over the weekend. Both my audi & I think that it may be from never hearing those high frequencies...? During the activation & adjustment, I couldn't actually "hear" the highest frequencies - it was more a feeling that my nerves were "awakened" by those pitches...if that makes sense?

Anyways - nothing earth-shattering but has anyone else experienced this after activation? If so, did the feeling get better over time?

[Tim]

@NathalieM Sorry to hear about your balance issues.  I'll share my experience in case it is helpful and/or encouraging.

I grew up playing hockey in a back yard rink so I felt like I always had excellent balance but then a few months after surgery, I suffered three bouts of extreme, debilitating vertigo and nausea lasting over 6 hours each time.  I went to physical therapy for balance due to vertigo after my CI.  The PT clinic specialized in issues of balance.  Lots of testing found no evidence of the crystals that are a more common cause of issues (BPPV) but said that I had vestibular hypofunction on my left (CI side).  This was reflected in issues liking have difficulty in a straight line walking with eyes closed or balancing on a foam pad with eyes closed.

Maybe the vestibular hypofunction was caused by the CI surgery or maybe it had been developing and just exacerbated by the surgery.  (I had been having problems with my tennis serve for a few years!)  Not clear why this might cause sudden onset of severe vertigo or again is just coincidental.  Just had to settle for unexplained cause, just like my SSD hearing loss.

The result is that PT gave me exercises to do in the clinic and and at home. 

My main at home exercise is standing in a corner of the room with my eyes closed on a blue foam pad.  Balance uses three senses (eyes, touch, and the vestibular function of the ears.)  This exercise takes away the eyes and touch and requires relying on just the vestibular function.  Trying to stay balanced is good exercise then and I can safely just lean back into the corner to avoid falling down.

After about 4 or 5 PT visits over 3 months and a lot of at home exercise, I "graduated" from PT. I haven't had an episode in around 5 months.  My balance is not quite as good as my younger days but is plenty good for every day activities and sports (hiking, biking, tennis, and pickleball.)  I still have my foam balance pad in the corner and try to use it every couple of days. 

In summary, going to a PT specializing in balance issues might be really helpful.  If you want to get a similar foam pad to experiment with while waiting to get in, I got this big Airex pad on Amazon. 

Good luck and hope that you find some relief too.

[Mary Beth]

@NathalieM

In my experience that can be caused by overstimulation on some electrodes.  It may be able to be solved by having your audiologist reduce the stim on the higher frequency electrodes that you did not perceive an audible beep and then bring those up much more slowly.  Just a thought.

Hope it straightens out quickly for you.  Welcome to the bilateral CI crew!

[NathalieM]

Thank you both @Tim & @Mary Beth for your feedback - I had read about your issues in another post, Tim (yikes, that’s quite an ordeal and I can’t imagine having vertigo to that extent!). I had a concussion from a 2x8 board that fell on top of my head from 10’ above, a couple of years ago (helped hubby building a shed) and this feels somewhat like it but not as bad.

I think that since I’ve had absolutely no balance issues until this surgery/activation, I agree with Mary Beth and going to err on the side of overstimulation. I see my audiologist in a couple of weeks (she’s 2 1/2 hrs away, not a quick trip) so I’ve resorted to reducing the volume extensively so I can find some relief over the next little while. I’m sure it’s just a matter of adapting and we’ve prob jumped the gun on those frequencies.

Thanks for reaching out - with my inquiry, I thought I’d add another perspective for those who might relate.

Happy Thanksgiving to all US peeps on HearPeers!! 🦃🥧

[Dizzy]

@NathalieM 

I was wondering how things are progressing for you. I had my first implant on 11/2 and have had constant equilibrium issues since, with or without the implant in. My physician said it could last for 6 weeks, but it is starting g to freak me out since I am at week 5 with no signs of this slowing down.
 

I don’t even know if I would call it vertigo since there is no spinning while I am staying still, but as soon as my head begins to move the world seems to move with it.  When I walk everything bounces. When I move my head from side to side it is just a blur. It is more of a distraction than anything since it also comes along with brain fog. I’m beginning to think I still have a lot of fluid in my inner ear.

 

I started my first week of vestibular therapy this week and am hoping that will help.

 

Hope you are doing better

[NathalieM]

Hi @Dizzy

I’m sorry that you’re having such debilitated dizziness since the surgery - it’s truly an energy-sapping condition and I hope your therapy will help you over time.

After much recommendations, I consulted with a local physiotherapist who deals with vestibular rehabilitation. My consult was just a couple of days ago and was given exercises to do at home - so this is just a start. 

I had my 4-weeks follow-up to activation yesterday (technically should have been 3-weeks but it was pushed to 4 weeks) and we’ve disconnected electrode 12 to see how that will help with the dizziness. This is set up on program 1 and my audiologist also set up another program (the 4th) to disable both electrodes 11 & 12 just in case the dizziness continues to bother me. I noticed a difference in sound quality but at this point, I can’t really decipher if it’s worse or better just yet. On one hand, I was doing my WordSuccess exercise this morning and there is a marked improvement where I was doing poorly before. On the other hand, I was at a retirement party last night and was struggling to hear some conversation whereas I thought I was doing better earlier in the week in a crowded restaurant (despite my dizziness issues).

It’s still early to see any marked improvement in my balance - I’ll be sure to check back in next few weeks though. Between the de-activated electrode(s) and physio exercises, I’m confident it’ll improve and just need to give it a bit of time. Oh…and rest…lots of rest!! 😆 I’ve had a busy week in noisy places (train rides, travel to Toronto where life is just louder, loud restaurants, party gatherings, etc…) - this weekend is all about rest 😁

[Mary Beth]

@NathalieM

enjoy your rest!

[NathalieM]

A bit of an update since this post...

Had an GREAT 3-month check up a couple of weeks ago. The next day, I setup the AudioStream in both CI's, connected both Sonnet 2's on my iPhone & iPad with no issues (I followed one of the thread here) and have some screenshots to share - note that I use iPhone 15, iOS 17.3.1:

Connection on iPhone

Showing full battery life...but not really  -- once I get the beep signal of depleted battery from the CI, the icon just disappears. I thought I saw a post here that this should show actual battery life?

Showing accessibility shortcut option

Triple-click on side of iPhone leads to Accessibility shortcut for hearing

My lock screen on iPhone - not sure what this means??

The 12th electrode on my new CI's has been re-activated at the checkup to see if my balance could handle it - I have one program with that electrode off if needed. After activating it, the words sounded like they had a bit of static-y quality to them, which was gone by the next day. My balance has been good, whereby the only sign of dizziness is if I work on the computer for long hours or I'm extremely tired. So far, I've kept it activated.

Cheers!

[Mary Beth]

@NathalieM

the ear symbol in the control panel of iPhones is a way to turn on LiveListen.  LiveListen allows us to use our iPhones as remote mics.