I'm having a very bad day

Hi Kev

Ihave had this for 13 months, I do get good days, about 3-4 a week.  I'm 54.  I have been doing vRT which is helpig, but I think when the bad hit, you forget about the good.  When you feel bad its just bad and the anxiety is no help.  I'm afraid of the eds, every time I try a med of any kind Ihave some reaction, so I just gave up.  They gave me nortriptyline, but I'm afraid of it, its in the same family as amitriptyline which I took and had a vrey bad reaction.  

Do you take meds?  What meds?  How lone have you had this?

Hi patty,I'm 51 and I've had this since October 17 last year I've been diagnosed with aquired nystagmus with osciliopsia and ballade problems meds I take 2,400 mg gabepentin 75mg clopidogral antrovastatin and about 8-10 paracetamol a day I've seen everyone at Northampton general hospital and a professor in Leicester royal infirmary but now been discharged from Leicester and now waiting to c the neurologist again at Northampton general hospital they r now saying untill they can find the cause they can't treat it. 😃

Hi Elizabeth

Thanks for replying. It sounds like your doing better, that's great.

Are you on meds? I'm still struggling with taking meds. I don't won't to, to many side effects.

What I can't get used to is that things csn be going good for a few days then it just returns, then it's back to wondering and depression, worry about how long it will last. I am thankful for the goods day. I did finally take a half a Xanax to calm down my anxiety and that has helped.

Hi Elizabeth, 

wer you dong VT vision therapy or VRT, vestibular Rehab therapy with a physical therapist? Could you share some of your exercises? Thank you!  It's great your feeling back to normal! Thus started for me last September as well. I've been on Zoloft for a couple of months and doing some VRT and it has gotten better but not back to normal yet! 

Hi Patty,

I have been on amitriptyline for a couple of years now, originally put on due to 'silent' migraines.  No pain with my silent migraines (I also get migraines with pain), but lots of head fog, tinnitus in the form of a very low level droning that would last up to 3-4 weeks at a time. I haven't had an episode of that for a year and a half and now, but my dr wants me to stay on it for this vertigo issue. My vertigo and balance issue is due to vestibular neuritis I had last September, it destroyed 83% of my balance on my right side.

I understand about good days and then going backwards, that has happend numerous times over the past 11 monts. Do what you need to do to get through each day.

Hi Lisa,

I was working with a Vertigo Therapist.  She started me doing vestibular rehabilitation. My first exercise was for Gaze Stabilization. While looking at an object move your head back and forth or up and down. Another one you hold an object and move your hand up and down, vertically or back and forth and follow it with your eyes. To make it more difficult you can move your head in the opposite direction of your hand. Another exercise was to look at an object and sway from side to side and back and forth. The next exercises were to walk down the hall and while walking move your head up and down, vertically and back and forth. Once I was able to do those I would stand on one leg with my eyes closed, and then to make it more difficult I would stand on a sofa cushion. I would do 5 sets of these each day – taking about a half hour each session. I wouldn’t be doing them all, but rather moving on to the more difficult ones once I was able to do the easier ones. I'm sure my dog thought I was completely crazy!  lol

I also get benign paroxysmal positional vertigo, so I am very careful when looking up or making sudden movements.  I hadn’t had this before my vestibular neuritis last September. 

 I did lots and lots of research on the internet and read everything I could find, I think I was pretty lucky that I found a Vertigo Therapist so quickly and started exercising about a month after the vestibular neuritis happened. It’s been a long road, but it’s getting better and better.  I think the key is that you have to keep moving, the more you exercise the better it is…for me anyway.  I know each of us have different issues and causes.

Hi Debbie

Thank you for what you said. Most days when I feel dizzy or off balance I keep the anxiety in check. I think it's when the sensation changes I get anxiety. Do your sensations change? May I ask what symptoms you have and how your dizziness feels?

So you don't take daily meds either? I take the Xanax when it gets bad like today, at least it stops the anxiety which dies allow the feelings to become less noticeable.

What other things are you doing to help? How long have had this?

My last bout lasted 4 months. I felt all kinds of sensations...each day was a mystery in terms of what i would feel after getting up in the morning....sometimes i would have swaying, other times it felt like someone was pushing me forward. Other days, it was impossible to look up or down or side to side. I felt drunk most days with a cotton head....like in a fog. And i did feel achy too very often...like i had the flu. It was nasty cuz you never knew what the next day would bring or why!!! It drove me crazy!

I didnt take meds every day during my second bout but the first time i had it, i did. It lasted 2 years. I took anti depressants.

I did vestibular rehab and it helped me a lot. I saw a therapist for my anxiety. I went for massage and i quit my job so i could concentrate on getting better. I went for a walk every day even though i had to hold onto someone.

Debbie