Major tracking and vertigo....

[Tisha]

Hi, I'm 16 months post -CK.  I had mild dizziness before CK, which left post-CK.  At 8 months post-CK I started having some minor vertigo that lasted about 15 minutes, with about an hour recovery time.  No residual effects.  I had about 4 of them, but none in the last several months.  Dr. Chang said this is normal, most likely from the swelling of the tumor and if I felt I needed them, he would give me steroids.  I declined since they didn't last long and then I was ok.

Well, on WEdnesday I had one that lasted about and hour, recovery time a couple hours.  I felt weak afterwards and unbalanced.  48 hours later (Fri), another one hit and left me in cold sweats, unable to get up, the whole shebang.  Slept 3 hours afterwards, felt better enough in the evening to go pick up my car at work, but would only look straight ahead.

Saturday morning woke up at 4:30 and was tracking wildly, nausaus, vertigo, couldn't walk.  It went on for hours.  I have a prescription of decatron on hand 12-8-4 mgs.  I hate this stuff.  Anyway, didn't want to call Stanford on the weekend, didn't know what to do, so started on 8 mgs.    MUCH better throughout the weekend, especially yesterday...although I was a busy bee due to those steroids.  I could look anyway without being unbalanced.
Tody is not such a good day.  Starting to feel shaky and a little unbalanced even on the steroid, it comes and goes.  I have an email out to Dr. Change.

Has anybody experienced this froafter CK?  Tisha

[sunfish]

The vertigo/dizziness thing is the worst part of the AN, to me.  Looks like your AN is/was about the same size as mine.  I had CK two months ago.  So I don't really have the experience to comment on post-CK issues.  The only really big vertigo spell I had was in January, pre-CK.  I essentially barely got over it before CK.  Had quite a bit of unsteadiness in the couple weeks post-CK, which has gradually improved.  I'm pretty much normal now.  I'm just waiting for the next issue to rear its ugly head, at this point, and your experience reminds me I'm not out of the woods yet.  Glad you're taking the steroids.  I hate them more than I can even express!  I think they were part of my slow recovery from this, but they're a very necessary evil.

Make sure you keep in good contact with your docs on this, and I hope it gradually decreases and isn't a problem for you anymore!

[Tisha]

Yes, this vertigo/tracking is by far the worst symptom.  I had SHL 3 weeks post-CK that came back with a massive dose of steriods over 18 days at 18/12/8/4 mgs.  My hearing came back, although in the 6000-8000hz it did deteroriate, but at least not in the conversational tones.  I have moderate/severe hearing loss in my  non-AN ear and wear a hearing aid.  I was so frightened to be literally deaf when the SHL came that one time.  Howeer, it is NOTHING compared to the vertigo.  YOu cannot function at all.  I am crossing my fingers this is temporarry and a short-temporary at that.   It is like a terrible hangover that you know will not go away from becoming hydrated.

Those steroids were the worst.  I didn't sleep for more than 3-4 hours for almost 5 weeks.  My skin felt thin, it hurt to sit on the back of my legs.  I was beside myself.   I swore I would never take steroids again unless it was an emergency, which this is.  So far the 8 mg isn't effecting me like the 18/12....   but it's only day 3.  Can't wait to talk to Dr. Chang.

Damn these AN's.   I was doing so well, so far.
I'm glad you Ck seemed succesful, Sunfish, and wishing good luck ahead.  Tisha

[Anomar11]

Tisha,

I'm now 18 months out.  At 4 months 3/09, I had a bad bout of vertigo.  Started on Fri night hadn't resolved by Mon, so I did start the steroids 12-8-4.  I think you and I may have corresponded at that time.  I agree on both counts - the steroids are miserable, but you can't function with this level of vertigo.  Since I started them, I did finish the course.  My 6 month MRI showed virtually no change.  I always have wonky head but have learned to deal with it most of the time.  It waxes and wanes.  Last July I had a worse case of this but not full-blown vertigo.  April 17, I had another bad round.  Out of nowhere, spinning, dizzy, nauseaus.  I took 50 mg meclizine and 4 mg valium and stayed in the recliner.  Was home alone for week end, and it does scare the heck out of a person.  After several hours, I was able to get up walk around.  Took about 2 days to get back to baseline.  I don't sleep well and had been 4-5 nights with very poor sleep, and I think this brought it on.  I stayed on 2 mg valium three times per day for about 2 weeks after this last round.  You might want to try to keep some on hand in case you have future episodes.  Also, you can use meclizine higher that what I did for vertigo,  I think 25 mg 4 times/day.  Just know you're not alone in this.  Keep the faith that it will subside.  You and I are at about the same timeframe.  I hope you feel better soon.  Mona

[Tisha]

Mona,
Thanks, it is nice not feeling so alone.  Why did they prescribe valium and mecliznine instead of steroids, after you took the steroids?  I also read from prior posts that Phyl too Valium, also (hi, Phyl)  I thought the vertigo was due to the pushing on the balancing nerve, stopping blood flow (my tumor is on my balancing nerve).  It's early in the morning, so I'm not going type much right now, don't want to get dizzy staring at the PC.

Dr. Chang's nurse did get back in tough with me and said it was just swelling.  What symptoms does the valium cause?  Can you drive and function per normal?  Thanks  Tisa

[ppearl214]

Tisha!   I'm sorry to hear you are going through this.... as we know.... things can crop up down the road... even at that time frame!

I'm going for my 4 year CK follow up today at Beth Israel (meeting with my radio-onc) and will report the same to him..... occassional vertigo issues, even after 4 years (in my case only... as we know, "individual results may vary.....")

Like Mona's comment (and as you have previously read).... I was prescribed a short-course (2 wks) of valium 2mg, taken a couple of times per day.... thought in having it prescribed was to "calm down" the nerve.  Neuro-onc also gave me some vestibular exercises that did help when the vertigo came on.  I was able to function on the low dose valium but did make me a little drowsy.  Only took for 2 wks as its not recommended for longer for this situation.  Steroids is for helping to reduce any edema/swelling.  Valium to help calm down the vertigo itself.

As you know (and I should lightly hand-slap you!), no Rx's should be taken without a dr's knowledge (at the start)......  please do not take any Rx's without a physician prescribing and following along.  Please contact Stanford (doesn't even matter if its a weekend) to make them aware of what is going on so they can prescribe properly (make sure the nurse you spoke does proper follow up with you).  Daughter of a pharmacist here...... please never start meds without a physician's awareness/following along.

Another suggestion is to check with Dr. Medbery on the CK forums.  He has discussed use of valium in the past on the CK forums, so he can help give insight (from a professional's standpoint) as well.

Please keep us updated as to how you are doing. you KNOW I'm cheering you on and hope Stanford will advise assistance for you quickly.

Hang tough!
Phyl

[Tisha]

Thank you so much for responding Phyl.  I have to be honest in that when I read that you still have vertigo issues 4 years out, it bummed me out a bit.  I have another email out to Dr. Chang's nurse (we corresponded yesterday, and then Dr. Chang emailed and said that same thing as the nurse).  I wanted to tell her how I was feeling and that what did she think of Valium.  I don't have vertigo or tracking right now, but start to get dizzy if I stare at the PC too long, or do anything too long.  I have to keep changing positions...getting up to walk, look another direction, etc.  I'm coping.  I was really hoping the steroids would help even more than they are, that is why I was interested in the valium and what it did.  I'll wait to see what she says.

You are right about calling Stanford even on the weekend.  I always feel like I'm bothering people, but I won't do it again.  They may have wanted to put me on something else, or a different strength...yes , you are right.  I will ask Dr.  Medbury, I need to try and find my password, etc...it's been awhile since I've been on there. 

When you do have your vertigo episodes, how long do they last?  Not individually, but rather the whole thing until you are steady once more for awhile?  I thought i was doing so well.  My unbalance issues have been SO good since the CK until now. 

Thanks Phyl.  Tisha

[ppearl214]

Tisha.... my  vertigo issues should not bum  you out as they only occur... maybe.... once every few months... and if I "aggrivate" (ie: move my head very quickly or bend down/over for something, etc)... part of my "wonky head" that many run into.

For me....  I've learned that's its all part of the AN journey, not necessarily tied in to the treatment choice (regardless if radio or surgical).  That dang 8th cranial nerve complex can be affected by our AN's and for me (and me alone), I've learned to adjust to the fact that it can be part of this AN processes......

....so, when I say I report it to my dr's, it advising them that yes, I have the every-blue-moon vertigo issue (that tend to only last a few minutes)  BUT YET, I have also embraced the fact that it can be tied in to the overall AN journey... and I've come to terms with it. I've learned, over time, what body movements I can do and which one's I should avoid (even sitting at computer monitor too long, as you noted....).... and have learned how to compensate for it.  I do the vestibular exercises as (and if) needed... and still toot on my merry way.

So, don't let me comments about my occassional vertigo bum you out. If anything.... look at me, knowing the CK killed the "brain booger" and that is the ultimate goal. No new growth, shrunk (in my case... not all do post-radio).... hearing levels are still good... and hoping you follow in these footsteps!

xo
Phyl

[Tisha]

Thanks, thanks Phyl!  Yes, the goal is a dead tumor.  I have also learned thru this balancing episode about the quality of life as far as balancing.  It really does effect it, and honestly, it scares me to death.  Perhaps when I come out of the other side of what I'm going thru right now, I'll feel better or have a different take/handle on it.  But for it being the first time, it makes me quite anxious and scared, to be honest.

I found my password/etc. and posted my question on the CK forum.

Sorry if what I'm typing is making sense, and I'm going fast as not to be in front of the monitor too long, not checking what I post.  Thanks for the continued support and hugs,

Tisha

[Anomar11]

Tisha,

My understanding re: valium is the same as Phyl's.  It calms the nerve down, or disrupts the faulty signal it's sending to the brain.  The first round of steroids also did a number on me.  They didn't rev me up, just the opposite.  I was quite out of it and couldn't work.  After that, I asked my local MD for a prescription of valium in the event it happened again.  I now always have some on hand in case.  This is an old-time remedy from what I understand as I have an elderly second cousin who has suffered from vertigo (unknown reason) for many years and has been prescribed this from way back.  Everyone is different, but it wasn't enough to make me out of it at that doseage.  You're in my prayers.  Hang in there.  It will be interesting to see what Dr. Medbury says.  Mona