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Low Dose Gent

Discussion in 'Your Living Room' started by Mac, Nov 25, 2019.

  1. Mac

    Mac Active Member

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    Thanks for the advice Melissa...Week number 2 has been much harder than week 1. I am definitely at a 10/10 now in terms of unsteadiness. It is no joke.

    Did any one else feel nauseous? any suggestions?

    Also.. I am on day 11 so I guess I need to push myself to walk more...You guys must be tougher than me b/c it sure is tough to get out there to walk...ha. Thank you again for all of the advice/suggestions...nice to know I'm not alone.

    Mac
     
  2. AnneT

    AnneT Active Member

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    Mac,
    Yup, this part of the recovery is definitely no joke.

    I had a slow 'gentle' vertigo that was nearly constant at that point. I tried to not take any drugs because I heard it would slow the compensation. But eventually I just had to take some Ativan or Clonazepam, Gravol or Meclizine, chewed mint leaves, and sniffed rubbing alcohol to cope with the nausea. It did eventually get better! Whenever I stopped a drug, things would flare up a bit again, so I weaned off gradually.

    I was grateful that I could at least stumble to the bathroom independently, and fetch my own food. I kept the food simple, because moving back and forth in the kitchen was very tough.

    My first walks were around the house, slowly, with walls nearby. Then around my own garden with a cane. Then 1/2 block to a park bench, sit & rest, then back home - with someone with me. Probably doing a few minutes a few times a day, allowing for recovery inbetween, is better than doing 30 minutes all at once and doing yourself in.

    I approached it like I had a concussion, which is really what my head felt like - conversations, computer work etc would just be too much after a few minutes.

    So, yes, move but also allow the recovery your hard-working brain is asking for. Check out the Vestibular Rehabilitation thread, too for things besides walking that you can gradually work into.
     
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  3. redwing1951

    redwing1951 Well-Known Member

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    Using walking sticks help or ski poles work too.
     
  4. MaryR

    MaryR New Member

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    Don’t get discouraged Mac!!
    I don’t have experience or advice to give, as I haven’t gone down this road yet (i’m considering that this might be my next step in my Menieres journey).
    But just wanted to say keep your eye on the prize and the big picture... a life without vertigo.

    You will make it through this rough patch.. just get through one day at a time and listen to your body. In a few moths this will be a distant memory. Walk or do the rehab exercises when you can, but don’t beat yourself up on days you can’t. Set small goals, and be proud of yourself for what you accomplished, no matter how big or small, each day. I’m no doctor, but maybe some days your brain just needs sleep and get less sensory input to heal and solidify all the new things it learned the day before!

    best wishes for a speedy recovery. No matter how bad you are feeling... think of the vertigo and remind yourself it could be worse!!

    Thanks so much for sharing your experiences.. it is helping me (and many others I’m sure) to understand more about next steps and other options for my own treatment.
    Warmest wishes,
    Mary
     
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  5. Mac

    Mac Active Member

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    Thanks Mary. I needed that today. The last two days have been very rough. For those following that’s day number 11/12.

    Really hopefully that this week things are peaking and I can soon start to focus on more rehab. Walking outside is an adventure right now.

    Thanks again Mary.
     
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  6. Clare

    Clare Active Member

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    Mac, your experience seems a lot like mine post-laby. It's a lengthy retraining effort you're going through -- it was perhaps 4-6 months before I realized the bouncy vision was gone and I could feel comfortable looking both ways then crossing a street. I had to look at it a week at a time to see the continuous improvement, and had to be diligent about walking and avoiding vestibular-impairing drugs (alcohol, valium, etc.).

    It was surprising to me how mentally fatigued I was during this time (and even now somewhat). My brain continually churned to stay balanced, understand sounds, and do a few cognitive tasks with what was left of its bandwidth. Adequate sleep was essential during this period.

    Week by week, and month by month, you will be able to reflect on how much more capable you are and how much more enjoyable life is without vertigo. These days I look back and wonder how I lived through those ugly Meniere's months and years. It's given me pause to think about how humans can adapt to progressively worse conditions without realizing how much has been lost or how much better life can be. This line of thought is also forefront in my mind because I live in Minnesota, where we think 32 degrees in September is unfairly cold, and in January (actually December this year) it is a balmy and beautiful day that beckons one outside. We're all just frogs in a pot of boiling and freezing water.
     
  7. Mac

    Mac Active Member

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    So... its been two weeks since the shot.

    The past 4-5 days have been rough. I think things are peaking right now. Seems like I was waking up more dizzy every morning than the previous day. I guess that means the gent is doing its job overnight. In any case... my nausea was really bad. I was having trouble eating. So my doc called in a script for me last night which really helped. I was finally hungry. I had actually lost 8 pounds in the few days I was not eating.

    As for the dizziness... it is pretty intense. Having trouble moving my head. Unfortunately the weather has been terrible in the Northeast so its been tough to get out to walk...I know I need to more. I will start today. I am also planning on doing some light yoga today for balance.

    For those who have had this...how far did you walk? around the block?

    Any suggestions are greatly appreciated...Thank you for all of your help!!

    Mac
     
  8. redwing1951

    redwing1951 Well-Known Member

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    Mac don't try to do long walks. Do short distances a few times a day. Focus on looking ahead and not moving your head left or right too much. As your dizziness lightens up you can start looking around. It also helps if you walk on different terrain. Use walking sticks to keep your balance. Reading your posts brings back memories of just how much effort goes into rehabbing. Take a nap if at all possible. Keep looking up because you will soon start feeling better.
     
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  9. AnneT

    AnneT Active Member

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    With the dizziness being worse first thing in the morning - I was like that, too. I did some Epley maneuvres (you can learn online, or see a Vestibular Physiotherapist to learn it) which helped. I also slept propped up on 2-3 pillows, and tried to keep my head and neck straight. Not great sleeps, but that did seem to help for that time. I also had to cut back on anything that had my neck flexed (knitting and reading were impossible).
     
  10. Mac

    Mac Active Member

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    3 weeks since the shot

    I believe the worst is now behind me. Its hard to say exactly when it peaked but I would say somewhere between day 7-14. Those were that days where I would wake up more dizzy than the day before everyday... Meaning the gentamicin was killing the hair cells overnight.

    I started doing light yoga and some vestibular exercises….They are really hard to do but I think they will be helpful. I am trying not to use any valium except in emergency situations. I brought the kids to see Santa at the mall on Sunday and you better believe I had a valium....that was rough but no chance I was missing it.

    Walking is still tough outside...I am walking up and down the street. I am not even close to walking around the block yet...but I am being patient and not trying to over do it.

    Yesterday I tried to drive the car to the local CVS. It was rough. I was surprised...I thought I was ready...I wasn't. So I will continue to be patient with driving...Hopefully another few days.

    I am starting vestibular therapy today. I am hoping to get a few ideas on how to move things along.

    And how could I forget....so far no vertigo. I have had many rumbles...but no earthquake...fingers crossed.


    Have a great day.

    Mac
     
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  11. redwing1951

    redwing1951 Well-Known Member

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    Mac back when I had my two little boys I took a Valium when making Christmas cookies with them!! Nothing to do with Menieres....so don't feel bad about taking one :)

    Sounds like you are right on schedule better days ahead.
     
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  12. AnneT

    AnneT Active Member

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    Doesn’t everyone need Valium to see a mall Santa? ;)

    Your experience so far is very familiar. I’m glad mine was in the summer - no ice and snow underfoot, could walk in my yard barefoot. Eventually I could sit on my lounger on my porch, but on windy days- just all those branches moving around was too much for me!

    Driving... I started with a 2 minute drive in my sleepy suburban neighbourhood. Once I ventured further, the toughest things were shoulder checking to merge, and waiting at a red light with all those cars zooming left and right in front of me.

    Driving is better now, but still not completely comfortable. I give myself extra time so I don’t feel compelled to rush.

    Hope it goes well with your physio!
    And yay no big attacks!!!
     
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  13. Mac

    Mac Active Member

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    4 weeks in:

    This was the first week where things were actually starting to settle down. I feel like the gentamicin has run its course and it time for my brain to figure out the new Mac. It definitely did a number on my vestibular system. The tests show that already. No change I hearing (yet).

    I am doing vestibular therapy and yoga everyday. Actually doing VT several times a day. I think it is really important that I do. I am walking as well. Did my first walk around the block two days ago. It was a big accomplishment. Wasn't easy... but I felt ready.

    Driving is still tricky. Being a passenger is getting easier. Bumpy roads are the hard part. I drove to the Walgreens yesterday and it was much better than last week. However...I still have a lot of room for improvement there.

    Going into stores is no fun but I am doing my best. I think it will get easier with time and you have to expose yourself to get used to it. So I am getting in there.

    No vertigo since the shot...still have little rumbles like its about to come but no earthquakes yet.

    Wishing everyone a Merry Christmas!!

    Mac
     
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  14. AnneT

    AnneT Active Member

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    Mac, that's great! No vertigo, starting to turn the vestibular corner into compensation. All your experiences sound "ditto" to mine.
    The best Christmas present ever, to be V-free! Best wishes and Happy Christmas!
     
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  15. Mac

    Mac Active Member

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    7 weeks out:

    My balance is slowly (and I mean very slowly) starting to improve. I am still doing yoga and Vestibular exercises everyday. I am also walking as much as possible...Usually 2/3 times per day.

    I got my hearing tested last week and my word understanding scores improved quite a bit. I think the gentamicin knocked out some of the fluid that was muffling everything for years.

    My ears have been feeling less full. I also have slightly less tinnitus. I dont get excited about any improvements because I know it can all change tomorrow... any MM veteran knows that!!

    I am now driving and starting to do more drives on the highway as well. I didn't rush to get back on the road and I am glad I didn't.

    7 weeks in...and I can tell you that this road to recovery is no joke. I am 40 years old and in good shape and that shot kicked my butt.

    That being said...7 weeks and no vertigo... so I am not complaining. Praying that continues!

    Mac
     
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  16. Gardengal

    Gardengal Member

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    I was thinking about you today, wondering how you were doing. Thanks for the update! I am also praying you have NO more vertigo and continued improvement!!!
     
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  17. Seraphim

    Seraphim New Member

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    Mac thank you for continuing to update your experience! I'm very interested in the low dose gentamicin approach myself. I'm a relatively healthy 33 year old who does Orange Theory and planned to run a marathon next month before vertigo just took over. I can imagine being humbled by the shot/recovery process can take a toll but if it means no more vertigo/vomiting it's all worth it right?
     
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  18. Mac

    Mac Active Member

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    Seraphim,

    I would view gentamicin as a last resort type of procedure. I would try everything on here for a few months/years before I went that route. I was 12 years in before I pulled the trigger.

    Hope this helps!
    Mac
     
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  19. Mac

    Mac Active Member

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    10 weeks out:

    The first 5/6 weeks were really tough.

    I am now back to work. Driving with no issues. I do Yoga and vestibular exercise's everyday...still.

    Hearing is slightly better (mainly clarity not so much decibels).

    No vertigo since shot - still get dizzy at times. but overall better.

    I know this can all change at anytime (I've dealt with beast for 12 years...trust me I know) but so far I am happy with the low dose (20) gent shot.

    Praying I continue to see improvements. If you are miserable and on the fence its worth a shot. Just be ready to lose a month of your life.

    Hope everyone has a great day!


    Brian





     
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  20. Gardengal

    Gardengal Member

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    I have been wondering about you. Glad you are seeing improvement and getting back to driving/work. I hope you have continued improvement!
     

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