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How do you know if the gentamicin has worked?

Discussion in 'Your Living Room' started by AnneT, May 16, 2019.

  1. AnneT

    AnneT Active Member

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    4 weeks plus 5 days.

    I still have some spontaneous nystagmus, most noticeable when I just wake up, and when I lie down for a rest.

    My physio encouraged me to consider myself free from vertigo attacks, and go live my life (just like the last episode of Orange is the New Black! “You’re a free woman. Go live your life.”) He thinks my mini-tilts are perhaps a bit of PPPD, my brain relying heavily on visual cues so getting messed up or freaked out by complex environments. He wants me to pace myself and allow recovery from unpleasant vestibular feelings, but to decrease any avoidance.

    He noticed that I hold my upper body stiffly when I walk. I need to learn to trust, relax and swing my arms.

    I still have oscillopsia- mild for walking, more obvious when my head gets moved by anything besides my neck muscles - chewing crunchy food, if I scratch my head, someone else bumps it (hugs freak me out a little).

    I tried running a few steps in my backyard, and felt like I was running in a bouncy castle!

    But hey, no attacks! I’m driving, I’m making appointments with reasonable expectations of being able to show up without my hubby driving me. I did a couple of small grocery shops. I can do about 20 minutes on the computer. Reading books is fine. Knitting and painting fine, just need to move and stretch my neck, rest my visual focus occasionally. Gardening- I forget about my balance issues and trip or tilt off the shovel while digging sometimes, but manage to catch myself. (And if I do fall, it would be a soft landing!)

    I still get tired easily so I don’t think I’ll return to art school this fall, if ever... I had so many attacks in that building.

    Maybe I’ll get back to a yoga class next week (restorative or 50+).
     
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  2. redwing1951

    redwing1951 Well-Known Member

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    Anne your life seems to be on track. Driving yourself to appointments is huge along with all your other activities. All seems to be in place and continues to improve. Very happy for you. Live life to the fullest!
     
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  3. AnneT

    AnneT Active Member

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    Another observation... the ear that had the injections is still a little sore, especially if I put pressure over the ear canal and wiggle it.

    When Dr. Hwang looked in my ear 6 weeks after the first injection, there was still a scab on my ear drum. So my eardrum is probably still healing.

    Did some balance exercises this morning. I can stand on one foot, eyes closed (in a doorway for safety) for only 1-2 seconds. With both feet on the ground, eyes closed - I get a bit of swimmy spinny sensation - I lasted 30 seconds. I could have done more but it felt very precarious. Baby steps.
     
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  4. Pupper

    Pupper Active Member

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    "hugs freak me out a little" OK, AnneT...you need to relax.

    hah. seriously though.

    Very nice that you're driving on your own. That says a lot. Recovery-wise and self-confidence-wise. A few months ago you'd given up on driving.

    "Did some balance exercises this morning. I can stand on one foot, eyes closed (in a doorway for safety) for only 1-2 seconds." That's been me since my first surgery. I haven't tried doing that in over a year. I'll have to try it again. Hopefully I can make it past 2 seconds now. But I doubt it. Eyes closed changes everything.

    Re. using a doorway for stability. You can also stand in front of your kitchen counter, with hands hovering just above counter.

    "Baby steps". Never heard of that one. So you hold hands up, try and walk forward, and giggle a lot?
     
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  5. AnneT

    AnneT Active Member

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    5 weeks post-gentamicin #2.

    Oh if only I could relax on demand! Ha. I’m not against hugs in general but right now they move my head around while my neck is extended - it’s just vestibularly uncomfortable.

    Ugh. Now I’m getting more of that bppv-like sensation in the mornings again. Wtf. Back to doing my Epley.
     
  6. Saera

    Saera Active Member

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    Anne youband I very very similar in our physical feelings. I meet VT today. Have so much I want to do. I also hold my neck stiff and don’t like anything touching my head.

    I lose balance often but no falls. I can drive just not on freeway where I have to look around quickly.

    I think our anxiety and discomfort are probably just the compensation left to recover. But it’s a bitch to try and trust that.

    Hugs!!!
     
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  7. AnneT

    AnneT Active Member

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    13 weeks since first gentamicin injection and
    7 weeks since second shot

    Hallelujah no vertigo attacks! In spite of crazy weather and some stressful times.

    I saw Dr. Hwang a few days ago. My hearing did take a bit of a hit after the second shot, but the word recognition is still 44%. My eardrum is all healed up. My VOR is messed up, which is what we were aiming for - evidence of killing off that funky vestibular centre. She wants to see me again in 6 months, just touch base I guess, or keep me in the system.

    I feel more and more confident that I’m free from major vertigo attacks. And trusting that, should they return, I’m finally in good hands. I got desperate and willing enough to take on any procedure or surgery, and to sacrifice some hearing and day-to-day balance, in order to be free of that torture chamber.

    My freaky anxiety is lifting!! Partly due to all this, plus some other mental health work I’ve been doing. I don’t wake up with a knot in my stomach. I can feel joy again sometimes. I was so happy and excited about it on Friday night, that I took a sleeping pill to get to sleep lol! (Yes I still have stuff to work on ).
     
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  8. Marta

    Marta Member

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    Anne I am so so happy to hear you are vertigo free! Enjoy the life :)
     
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  9. Saera

    Saera Active Member

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    I love this so much
     
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  10. Pupper

    Pupper Active Member

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    AnneT that's so great!

    Do keep us updated.
     
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  11. AnneT

    AnneT Active Member

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    14 1/2 weeks since first shot.

    A little frustrated with ongoing mild oscillopsia, and "woop" mini-tilt feelings (mostly in flourescent lighting - my TheraSpecs help somewhat.) I've got complacent with my vestibular rehab, so I'm stepping that up again. But still, I'm cool with this, even if there's no more improvement.

    My sister is a physio with long-standing concussion issues, including some balance and visual stuff. She recommended lots of calmness for my nervous system to help boost the neuroplasticity. Makes sense. To help this, I'm keeping an on-going Gratitude is My Attitude list (yes, all you Menierians are on it!!). I'm up to 190 items so far.

    I'm also enjoying a little book, "Just One Thing" by Rick Hanson. It teaches how to tune in and really take in the positive stuff, to help develop that 'Buddha Brain.'
     
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  12. AnneT

    AnneT Active Member

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    4 1/2 months since first shot, and last vertigo. The freedom has been great.

    Yesterday I was feeling a little off. It’s migraine season here with big Chinook winds (Chinook arch was extended from jasper all the way south to Montana!) and crazy barometer changes.

    While driving I had one of those ‘woop’ feelings, and it really felt like a vertigo was going to start. It didn’t, but it’s left me shaken.

    After a few months of freedom... I think I can’t handle it if it starts up again. So of course I’m back to wishing someone had offered me a laby. I’m trying to take comfort in knowing I can get back to dr. Hwang for another gent shot if this does start again. I just hate having that bit of uncertainty creeping back in.
     
  13. Marta

    Marta Member

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    Anne I can understand where you are coming from. The fear is always there no matter what. Maybe it would have been a vertigo attack if it had not been for the shots.... but it wasn’t. Try to stay positive and perhaps contact your doctor if you can. Just to be reassured. Be strong
     
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  14. AnneT

    AnneT Active Member

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    Thanks Marta. Indeed... im sure I would have been in a bad way if it weren’t for the shots! I’m doing better now. So glad to have this place to vent and be understood! And to have a doc I can work with.
     
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  15. Pupper

    Pupper Active Member

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    Glad to hear you're still doing better for the most part. You took the proper steps in the treatment protocol. Gent comes first. For obvious reasons.

    I know what you mean about having short scares. It makes you start thinking the worst. And yes, agree, when I think about the spinning attacks ever coming back, it's a petrifying thought. I've read you for a while now. I think we have similar unsettled minds. I for one am rather easily thrown off course with negative thoughts. What's worse is I'm drawn to them. (Or my enemy brain is. Personally I don't like them.)

    I'm going to get that Rick Hanson book. I've bought a few books you've mentioned before. Maybe I should read them sometime.
     
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  16. AnneT

    AnneT Active Member

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    Thanks Pupper
    Great minds fret alike?
    Yup combining that Hanson book and really focusing on my little gratitudes - not just lip service but re-living and wallowing in them for a few minutes... and of course being more free from vertigo and vertigo-anxiety... all really helping my mindset.
     
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  17. Onedayatatime

    Onedayatatime Active Member

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    I think you may not realize how strong you really are. ;)
     
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  18. Saera

    Saera Active Member

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    Hello! 7/13/19 was my last vertigo attack after gentamicin. I have not had an true vertigo but many feelings of 'whoosh' and nystagmus. It is scary. I still take valium to help with that but try not to let it keep me from living. it is so hard to trust fully. I get it.
     
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  19. Clare

    Clare Active Member

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    Saera, sorry to hear you are stuck in whoosh-and-nystagmus land, but glad you haven't been plagued by vertigo. I hope you can find a treatment that lets you live your life without the anxieties of 'when ....' I'm pulling for you.
     
  20. AnneT

    AnneT Active Member

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    Saera
    I notice nystagmus and very subtle slow spin when first lying down with my eyes shut, and upon wakening. I tried an Epley yesterday morning, but had no spinning sensation during the maneuver. So, I assume it’s just post gentamicin life, rather than bppv.

    Positive Update
    People who saw me go through that year+ of hell keep telling me recently that I’m positively glowing! (Maybe it’s just the rosy round cheeks of weight gain?? Or the longer hair because I’m still nervous to go to the hairdresser??) And that I’m ‘back’, and look so much better etc.

    I’m trying the Wahls Protocol food to try to boost my neuro healing. It’d be nice to have less of that occasional nystagmus feeling and no oscillopsia - but even if this is as good as it gets, I completely accept it as an excellent deal, a good trade off in order to be rid of the wicked attacks (May they RIP.)
     
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