Back with an update - unfortunately

[crivers]

Cyndi,

thanks for sharing - and I'm very sorry to hear about your AN and your current symptoms. I tried the steroids for 2 weeks and I'm pretty sure I won't do that again. I'm not sure which symptoms / side effects were worse.

I've been off work for a week and have been really working on my diet and my exercise (and my naps) and am tracking all of it and keeping a diary to log how I feel everyday. I'm trying to find out if there is something (hours of sleep, types of food, types of exercise, alcohol amount, etc.) that I am doing that makes me feel good or bad the next day. I just started and I figure that I need a month or so to get a good feeling. Although I have found out that a heavy workout makes my head physically hurt (my doc told me this would happen, but I had to conduct my own tests). Now I'm trying to find out how much of what type of activity I CAN do, since just walking doesn't really do it for me.

I had hoped that the removal of any work stress would ease the symptoms, but it hasn't improved one bit. Some things appear to be moving in the wrong direction, but I'm taking it all one day at a time.

I got my scan back last week and it shows increased size. I have to send it across to the US for my Dr to read and comment; hopefully I will hear from him early this week.

On the hearing - I would seriously consider a hearing aid. I don't know why I waited for 18 months, but I finally went to try one out and couldn't believe the difference. I can't stand to be in a crowded situation or training class or work environment at all now if I forget my hearing aid. That in itself has lifted my spirits. I just got it in December - unfortunately, I've had to get it reprogrammed already due to increased hearing loss from the swelling. I hope to get it reprogrammed again when the swelling goes away - fingers crossed.

I'm still coming to grips with the wonky head thing. I can't believe what a space cadet I've turned into. Luckily I have a supportive family and friends who remind me to stop being so hard on myself when I slip up (like driving an hour into the city to get my scans, only to return home without them  ).

I'll do my best to keep you updated and I'll look for yours as well. Best of luck going forward.
I'm still looking for someone who went through this and has come out the other side...anyone? Maybe I'll post a new topic to see if I get any hits.

Cheers.

[sunfish]

Hang in there - I started feeling a little better in mid-January, had good days/bad days in February, and abruptly got WAY BETTER in March.  My balance and wonky headedness are about 90% gone during the day.

Unfortunately, I never did find any correlation between activities, what I had to eat, how much rest I did/didn't get, and disequilibrium.  Very frustratingly, I simply had about 5 months where those symptoms were with me every minute.  I did manage to work, but I realize now that I had about 30% less energy.

I'm taking trental (pentoxyfilline), 400 mg. 3 times daily.  This is supposed to help blood flow at the microvascular level.  When I asked the neurosurgeon what this was supposed to help with, he replied "Everything."  I really hope it helps prevent further hearing loss.  I'm not at all sure it has anything to do with my recent, miraculous recovery.  I have to take it for another year.

I know I'm still subject to relapses and return of symptoms.  I'm praying that doesn't happen.  So there's hope for you - remember, you had CK just a couple months after me, so maybe you'll start feeling better soon.  Take care!

[crivers]

sunfish,

that is great news. First I'm glad to hear that you've improved, I know it was a hard road for you. Second, that is exactly what I needed to hear, someone that had gotten the post CK wonkiness and seen it go away (not necessarily 100%, but way better). You've put a smile on my face. Thanks.

Cayce