My So Called Dizzy Life

My Chronicles of Vertigo, Nystagmus, Imbalance & Dizziness

I’m Still Hanging In…

on May 18, 2013

OK, so I’ve been MIA for a few months.  Turns out that having a Vestibular Disorder is more than tiring – it’s exhausting!  I don’t think I ever really understood what fatigue was until I got the dizzies.  Between my basic everyday activities and working my full-time job, I’ve just had no energy.  Or time.  I’ve felt drained.  For weeks and weeks (OK, months and months), I felt really guilty for not posting on my blog and writing summaries of my weekly vestibular therapy.  Admittedly, I didn’t respond to comments.  I felt rude.  I felt I was letting myself down.  Then I remembered that I wasn’t Superwoman.  I gave myself permission to take a break.

So what have I been doing?  Well, I saw another specialist in December who practices Otology and Neurotology.  I decided that I wanted a second opinion before proceeding with the intratympanic gentamicin injections that my doctor was recommending. (Read more about that here.)  After meeting with the new specialist, I decided that it was OK to give myself more time to compensate.  Maybe waiting won’t change my uncompensated vestibular neuropathy, but maybe it will.  Maybe I’ll learn to adapt better, maybe I won’t.  The one thing that I know for sure is that I am in control of choosing what path I will take.  I am in charge of the timeline and if I decide to proceed with the destructive treatment it will be when I am ready.

In the meantime, I’m just taking life day by day (I know, sounds cheesy.)  Most days I feel OK, some days I’ve actually felt good, and some days I feel icky.   I’ve actually felt icky the past 4 days.  Normally, my dizziness is always there; present in a turn of my head or a fast movement of my body.  But in the past 4 days, the dizziness has been swirling around my head, making it hard to focus.  I feel sick.  ( I’m sick of feeling sick.)  I feel scared.  (I don’t want the dizziness to get worse.)  But I just keep reminding myself that “shit happens” and I will get past this.  I’m trying to focus on far I’ve come.  I’m trying to focus on good things.  Last summer I had to use a walker to get around.  Now, I have the balance to go hiking (with my trekking poles).  I’m hoping that being positive will give me the energy and strength to get past the bad.


22 responses to “I’m Still Hanging In…

  1. bona1010 says:

    You’re my hero. And I’ll always try to be around if you ever need me for anything. 🙂

  2. Sandi Fillmore says:

    hi, first I have to apologize because I speak my text since my dizziness makes it hard to type. I was diagnosed with vestibular neuritis on May 14 2012 and am still uncompensated. I find it very challenging and it sounds like from a time line perspective we are about equal. did you have a VNG test done that gave you the percent of damage?
    Sandi

    • Emily says:

      Hi Sandi,

      No need to apologize! I think it’s amazing that you have found a way to adapt.

      I did have VNG, VEMP, & ECochG testing done last summer (you can read more about that here.) The results were that I had a 100% right unilateral weakness, although since then the specialist that I’ve been working with has suggested that it’s possible that my inferior vestibular nerve may still have sporadic activity. (Well, yeah, *anything* is possible, right? 😉

      I’m sorry that you are still uncompensated. It is so frustrating. Know that you are not alone. Have you tried vestibular rehabilitation therapy?

      Best,
      Emily

  3. Debra says:

    I’m so glad to hear from you. I am in the same boat as you, some days are ok and some are horrible. Keep hanging in there! XOXOXO

    • Emily says:

      Hi Debra,
      Thank you for the words of encouragement! Sorry that you’re in the same (rocky) 😉 boat as me.

      We just have to focus on the OK days! 🙂
      Emily

  4. Cathie says:

    Wish I knew this blog was out there. Vestibular problems are the most infuriating I have ever had. A few good days, then several bad days. Missing out on good times with family and friends, you are right the fatigue is awful.

    • Emily says:

      Hi Cathie,

      Just keep focusing on the good days and the good times that you have. Drink them in for strength to get through the bad days.

      Best,
      Emily

  5. Christa says:

    Hi Emily, I was so happy to find this today on Veda post on FB. My story is similar to yours. Was dx with low functioning vest system 20 yrs ago. After a year of hard work I was able to have almost a normal life. Driving, shopping, working, enjoying. Over the last 4 years my balance has gotten worse. I retired early, 3 yrs ago to care for my mom as my father passed. So big changes and lots of anxiety. I just saw my ENT and she told me to suck it up basically you are getting older and your balance will just get worse……anyway struggling again and feel lost as no one understands. I’m scared what the future holds. My GP at kaiser just prescribed buspar to help with anxiety but side affect Is dizziness but willing to try anything. Also take Valium & meclizine which has always worked. Well thanks for listening…..no one around me understands. Christa

    • Emily says:

      Hi Christa,

      You sound like an inspiration to me! I’ve only had this for one year, but you’ve been dealing with this for 20 years. Talk about perseverance! Every day that you have dealt with this has made you a stronger person! (Even if it doesn’t always feel that way….) I understand the anxiety. I was an anxious person before the dizzies; and the uncertainty, the loss of control, and the fear has not made that better. I, too, was prescribed meds for anxiety. I figured I would take anything that might help (after all, what did I have to lose?) I understand how you feel. Having a Vestibular Disorder is tough. It’s unfair. It’s hard to cope with. It sucks. But you’re not lost and you’re not alone. There are so many of us out there that understand what you are going through. You possess such strength. Don’t forget that.

      Best,
      Emily

  6. Karen says:

    So great to read this. My story exactly. Just have to take each day as it comes. Meditation helps a lot!

    • Emily says:

      Hi Karen,

      Thanks for stopping by my blog. 🙂 I have tried meditation in the past, but I have found it difficult to still my swirling mind. You’ve inspired me to give it a go again. If you have any tips, I’d love to hear them.

      Best,
      Emily

  7. Jo Iyer says:

    What kind of a full time job do you do?

    • Emily says:

      Hi Jo,
      I work for a large public library system. I’m a “behind-the-scenes” person; I help acquire books for the library and am in charge of selecting and ordering all of our DVDs and Music CDs. Most of my time is spent working at a computer (with two monitors!)
      Emily

  8. Leann says:

    I, too, had vestibular neuritis almost two years ago and am currently dealing with a huge setback because of migraines now…..I was told to ween off my daily vestibular suppressant medication becuz it was regressing the compensation. I wish you so much luck. Leann

    • Emily says:

      Hi Leann,
      Sorry you are dealing with a setback. I spent months and months (and months…) weening myself off my daily vestibular suppressant medication. I do wonder if that’s why I’m feeling worse now, but my plan is to try and push through. We can do this!

      Wishing you luck as well,
      Emily

  9. Marissa says:

    Emily! Glad to hear you took a much needed break. I am wishing you all the best.

    Much Love,
    Marissa

  10. Lynn Dorrough says:

    Reading your posts helps me realize there may be hope for me. I’ve suffered with vertigo for over a year with symptoms so similar to yours. I still do not have a diagnosis and I am suffering with dizziness daily.

    • Emily says:

      Hi Lynn,

      Yes – there’s hope! I’m so sorry that you have to deal with this dizziness too. Be persistent. If one doctor doesn’t help, try another! (After all, they work for *you*) Even without a diagnosis, know that you’re not alone and that there are people out there that understand what you’re going through.

      Stay strong!
      Emily

  11. Glad to see you are writing again! Even though you are having a setback, you still are WAY better than where you were at this time last year.

  12. Debbie Alles says:

    Stay Strong !!! You’re absolutely right, you need to take all the time you need for yourself !!! I learned this as well. On the better days you do what you can, and on the bad days you do only the minimal of what you need to !!!! Your feelings could not have been expressed better !!!!
    I will pray for you !!!!!

  13. Emily says:

    Hi Debbie,

    Thank you for your kind words. I think you hit the head on the nail – I constantly have to remind myself that it’s acceptable to just do what I can do. If I can’t do more, that’s OK. As an over-achiever, this is a difficult concept for me. But I’m going to work on it.

    Best,
    Emily

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