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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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    Day 5. Felt a bit wobbly on and off today, but not sure it’s any different from my usual disequilibrium days. So I’m not sure if the gentamicin is kicking in yet.

    I’m mostly calm though, just trying to carry on with my usual routine. With occasional flares of impatience and scattered “what’s the point” bad attitude.
     
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  2. AnneT

    AnneT Active Member

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    Day 6. Overnight, I think maybe the wobblies might be from the gentamicin. Still not too bad, but slightly different from my usual post-vertigo disequilibrium. This is sort of ... yeah, hard to describe. Sometimes feel a mild back and forth, like my high efficiency laundry machine shimmying to detect the load. It disturbed my sleep a bit more than my usual off balance feeling.

    Dr. H wanted to see me in the first few days of July for a possible second shot, but she’ll be away. So my appointment will be July 13. I thought of postponing because this lands in the middle of hubby’s planned holidays, but I’m fed up with delays. Hopefully hubby can change his dates.

    I hear all of you cheering me on to go do my walkies, So here I go!
     
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  3. redwing1951

    redwing1951 Active Member

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    One description....feeling like I had just gotten off a 3 hour boat ride...sea legs? You are grounded but your legs are floating :) Keep walking my friend!
     
  4. Clare

    Clare Active Member

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    Walkie, walkie, walkie. You can do it!
     
  5. AnneT

    AnneT Active Member

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    Redwing
    Yes, I experienced the boat feeling even before gent - usually after a bunch of vertigo attacks. This feels similar.

    Clare
    I felt worse today- hard to tell if it’s the gent, a Menieres sort of day (a few times I felt I was about to spin - while on the computer, and watching tv). But I had my little walk. I tried running a few steps the visual world was very up and down bouncy, which I haven’t experienced before- so that’s gotta be the gent working...I hope!

    Kind of nauseated tonight.
     
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  6. redwing1951

    redwing1951 Active Member

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    Very up and down bouncy....yes I would say the gent is working.
     
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  7. Nathan

    Nathan Member

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    When I began to jog again my vision would mimic the shaky camera, jerky camera, queasy cam, free camera cinematographic technique which you may have seen in movies such as The Blair Witch.

    If at all helpful, I found that running, or jogging up a hill or stairs significantly decreased this visual effect, as the jarring, jerky, & queasy vision induced by the ground reaction force is circumvented to a significant degree — the functional equivalent of comparing the lower degree of joint impact, & subsequently the decreased shock waves sent through the body & g-forces applied to one's spine, neck, skull, & brain that separates a stepper (or stepping) machine from a treadmill.

    After jogging up stairs, or up a hill everyday for 2 - 3 months, I noticed that the shaky & queasy vision I experienced while jogging on leveled ground evaporated, as running up that hill served as a less visually disorienting reintroduction to jogging & running.

    That said, I haven't had a gentamicin injection. Unless you & Redwing are describing something entirely different in terms of the visual & sensorial experience while jogging, which I don't think you are—though I may be very wrong—I see little reason why the above reintroduction to jogging wouldn't apply to someone who's had a gentamicin injection.
     
  8. AnneT

    AnneT Active Member

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    This morning - very nauseated from a 20 minute walk. It’s gotta be the gentamicin, as I’ve never had that before.

    I found some interesting stuff on that dizziness-and-balance website about vestibular compensation.

    Nathan
    I will try the uphill jog. Excellent idea. I’d been gradually adding jogging downhill (I’m quite deconditioned) before my gentamicin. But I’ll try the uphill - it makes sense, as going downstairs has been more challenging than up (to my balance) for a couple of years now.
     
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  9. Clare

    Clare Active Member

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    This week should be the worst of it, and then you will get better and better as your brain learns to pick up the extra cues from proprioception and vision. Keep up the good fight -- you're winning!
     
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  10. Nathan

    Nathan Member

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    Proprioception *chuckles & rolls eyes… That's it.

    Despite a deep, desperate, & prolonged rummage of the 1,200 cc of salty porridge contained within my neurocranium, this is the seemingly elusive word I failed to recall while authoring my previous comment. Forcing what remained of my working lobes to restructure entire sentences due to my inability to recall it.

    Thank you, Clare *notes proprioception, proprioception, proprioception, three times so to remember.
     
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  11. Onedayatatime

    Onedayatatime Member

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    Hi AnneT
    Been following your thread with interest as I am scheduled for a VNG and then surgical options discussion. Like you I have reached the point where Menieres has won. Over the past 3 years, menieres has slowly eroded my life away to the point where the 5 hour Vertigo episodes are making it impractical to continue working, let alone any other plans like taking a vacation. Several weeks ago I advised my ENT, no more predisone, diuretics or other meds as none of them are effective. I have tried antivirals, JOH (still on it) as well. Gent seems like the least invasive and risky plan of attack. I plan to ask for stats on the success rates for each option during the post VNG discussion. I don't want to screw around anymore. I am so tired of puking and being completely disabled for significant parts of the day. I pray you achieve continued progress as it represents hope for others like me.
     
  12. AnneT

    AnneT Active Member

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    One day at a Time,
    One of the very few good things about suffering is that we can understand and help others going through it too. Glad to pay it forward. Without this forum, I would have known less, had more fear (still had plenty anyway!), and might have dragged my feet even longer through unnecessary hell.

    Yup, sounds like you’re ready for more definitive measures. Have you had a VNG before? I was super nervous, but the vertigo it induces is so mild, and short - a big fat nothing compared to an actual attack.
     
  13. AnneT

    AnneT Active Member

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    Ooooooo Proprioception, proprioception, proprioception”

    Sounds like the science song that the sting ray teacher sings in Finding Nemo!
     
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  14. Clare

    Clare Active Member

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    When I was evaluating gent vs laby, it came down to this: Gent less invasive, less costly, less certain to provide a permanent end to vertigo. Laby comes with standard surgical risks but 100% permanently stops vertigo. I realized that it was not only vertigo that was robbing me of living but also -- in a way even more so -- the pervasive anxiety of when the next attack might occur. I chose to have labyrinthectomy surgery because it would immediately halt the anxiety along with the vertigo in a way that gent injections couldn't. With gent I would still be waiting for the possible next attack. At the time I felt I had nothing to live for and nothing to lose. Laby was the right choice for me, but it seems like gentamicin injections are the more rational approach if you can handle uncertainty and live with the possibility of continued attacks. I totally get where you are at right now, and please know it can and will get much better!
     
  15. Onedayatatime

    Onedayatatime Member

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    Thanks AnneT and Clare. Next Monday is my 1st VNG. DW is driving me as I am concerned about a full blown Vertigo attack since I have never had a mild one. Once it starts rolling I have not been able to stop it. Typically, the entire event is 5 hours. Usually starts with pressure in the ears and behind the eyes followed by dizzy for a few, extreme dizzy for a few (better get to a safe spot with a bucket), full rotation and vomiting for a while accompanied with feeling extremely hot sensation, sweating, followed by dizzy, followed by exhausted and extremely cold sensation, followed by sleep for at least 2 hours, followed by 24-48 hours of run down and chest pain from vomiting.
    It's interesting to hear gent may not stop vertigo. I thought stopping vertigo was the point. I am not leaning in any particular direction as of yet other than stopping the vertigo. My left ear hearing is down to 20% discernible hearing. One might say it's not worth saving. But the last test was during a flare-up. Hearing is always worse during a flare due to all the head noise.

    In the past year the only improvement has been with Hyperacusis. Either I am getting used to it or the nerve degradation has lessened the pain.

    Clare, I hear you (no pun). I am willing to give-up the ear for a guaranteed end to this vertigo nightmare. I'm 61 and still hoping for a happy ending. Unfortunately, my hope has been fading.
     
  16. redwing1951

    redwing1951 Active Member

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    Onedayatatime your description of your attacks is almost exactly like my attacks plus I had drop attacks to go along with it. You do have a way out and I understand that only you can make the decision regarding a laby. I chose the laby 7 years ago at age 61. I had very little hearing left in my mm ear. I had one gent shot that ended vertigo for 8 months then the attacks came back. I had a monkey on my back that needed to leave! For me a laby was my life saver. I believe you can still have a happy ending, a full vertigo free life. I wish you the best and hope you find the relief you are searching for.
     
  17. AnneT

    AnneT Active Member

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    Onedayatatime
    I was also freaked that the VNG inducing vertigo would trigger a long attack, but it really doesn’t seem to work that way - as soon as they stop putting water in your ear, it settles right down. I don’t think I’ve read of anyone here having it induce a long spin?

    Take some alcohol swabs, or ask for a few - most medical offices have them. Sniff away on that and it’ll help any nausea you get. Have your rescue meds handy in your pocket. I treated myself to them after my VNGs, even though I didn’t really need them :)

    Mindfulness meditation that I learned from Jon Kabat-Zinn book Full Catastrophe Living has also been a big help getting me through all this nastiness - coping with boredom, loneliness, all these medical tests, the horrors of vertigo and losing hearing.

    Clare
    I 100% agree with you. If this doctor had given me the option, I’d have gone straight to the laby. But she does seem to understand the anxiety component, and always wondering if I’m safe to drive, make plans, etc.

    My plan is to do 2 injections. If there’s still vertigo by August I will beg her for the laby. If I’m vertigo free (which I’ve been before, even without treatment) she’s agreed to a VNG. I’d get my hearing rechecked then too. If there’s even a little bit of the vestibular nerve still firing, I guess it’ll be a discussion of more gent or Laby, and you know what I’ll be pushing for!
     
  18. Onedayatatime

    Onedayatatime Member

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    Redwing, thanks for the motivational talk. I look back and had my 1st vertigo attack over 10 years ago. At that time i was told i had some vestibular issues, likely the result of an infection. I had several more throughout the years in between with no action on my part. Just suck it up and get back to work. Three years ago it all went south. I've been through 3 ENT's as I was sure the 1st was blowing smoke with my diagnosis. I found this board and started all the low impact options. None worked. I had hope then. Now, I find myself ready to go for a Laby if I will be allowed to do it. The ear causes more pain with no real benefit. I am considering getting back on prescription antidepressants as that is how far I have fallen in the past 4 months. I expect the medical delays to continue as it seems to take forever to get anything done now-a-days. Like you, I don't particularly like monkeys. They are nasty little beasts. I'm ready to shoot mine.

    AnneT, I don't know anything about rescue meds. I was never offered anything and I never hear of sniffing alcohol. I have spent some time drinking certain varieties and they just legalized pot in Illinois. Maybe I should indulge.

    Realistically, I want to retire in 2 years. I have volunteer stuff I'd like to do. I want to make up for 25 years of not fishing. BTW, that is a bunch of making up. I want to wake up in the morning and not feet dizzy or sick to my stomach. I'm just not so sure God does not have a different plan for me. But I am gonna keep trying.

    Thanks all for the info and encouragement.
     
  19. AnneT

    AnneT Active Member

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    Onedayatatime
    Ack! No rescue meds? Nothing to take to settle the vertigo attack (or knock you out until it passes)? My gosh, if I didn’t have those... ugh.
    Over the counter Gravol, Meclizine or Benadryl.
    Prescription- should be able to get from a family doc or ent - lorazepam (Ativan) or other benzodiazepines.

    I had been prescribed Zofran (heavy duty anti-puke drug, usually used in chemotherapy patients) but haven’t needed it since I discovered the rubbing alcohol trick.

    The alcohol sniffing - I’ll clarify - is rubbing alcohol. Definitely don’t drink it, unless you want to be blind too!
     
  20. AnneT

    AnneT Active Member

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    Tried walking with sunglasses and hat, stopping every 5 minutes, for a total of 20 minutes walking yesterday. Was more nauseated than the day before, and took longer to settle.

    I woke up at 4 am with tummy cramps and nausea - I think it’s unrelated to the gentamicin, as I wasn’t particularly dizzy or off balance. It might just be one of those things, or the fact that I forgot my evening dose of Epival. (The fact that I forgot the Epival is a good sign - it’s for drop attacks- if I’m forgetting, it means it not so much on my mental radar.)

    This morning (day 9 or 10?) I feel a bit more wobbly, so I don’t think the gent effect has peaked quite yet.
     
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