episodes of vertigo

[Melissa]

This is my first post, so I hope it is ok. I was diagnosed with a .5 cm AN in my IAC in March 2012 and had most of the symptoms people present with, including dizziness, vertigo, and balance impairment.  Since the tumor is small and my hearing loss was already measured as moderate to profound, I elected to "watch and wait."  Since May of this year, I have had 3 severe episodes of vertigo.  Each episode lasted about 12 hours. I had VNG testing in August which showed balance impairment (not a surprise!).  Has anyone else experienced these debilitating episodes of vertigo? And, has anyone figured out what triggers them?  The best guess I have come up with is that I study early in the morning.  On 2 of the days when I had the worst episodes, I had read for a 2-3 hours.  However, the episodes didn't begin right away, but several hours later. I did have an appointment with a balance therapist.  She gave me a couple of exercises for BPPV, but that hasn't really been a problem.  I do plan to go back to see her.  I had another episode of vertigo yesterday, not as severe, but still debilitating enough to cancel my work schedule. Thank you for any suggestions you may have. I appreciate your willingness to share and guide others with acoustic neuromas.
Peace,
Melissa

[ANGuy]

From what I've been told by several Drs., there isn't any "trigger".  You just get the attacks sometimes and that is all there is to it.  I was a little skeptical myself since my dizzy attacks were very rare, but always happened on a day off from work.  IF there are triggers, I think they would be different for different people and any trigger could change over time.  In other words, there probably aren't any triggers, and if there were, you would have to figure it out for yourself.  This is what I have deduced with my under-powered brain.

I think what would be more practical, at least in the short term, would be to find which meds help mitigate or stop the attacks.  For me, I always get terrible vomiting along with a dizzy feeling.  As time has gone by, my attacks are less about feeling dizzy or not being able to stand up etc, and more about just non-stop vomiting and dry heaving.  Zophran instantly stops the vomiting.  I mean it works while I am chewing it up and it is still in my mouth.  Since the crisis of vomiting is then abated, I take valium and mecklazine which stops any dizziness and makes me pretty much not care about any of this because I am so sedated.  The valium and mecklazine take an hour or so to settle the dizziness, but I can handle the wait since I am so relieved to not be heaving my guts out.

[v357139]

Have you spoken to your doctors about these symptoms?  I'd be interested to know what they said about continuing watch and wait.  I was under the impression that watch and wait was best when the tumor was not causing any problems.  I waited a year, but did not have balance problems until two days before surgery.  Once I had that episode, I was glad to get it done.

[Melissa]

     Thank you both for your replies. To ANGuy, I will ask the doctor about Zophran when I see him in two weeks.  The throwing up is very distressing, along with not being able to stand up and throwing up if I move an inch. I did get some phenergan after the episode in July, which helped with the throwing up episode in October. It does help to have you remind me that there are not necessarily triggers, that each person has to figure it out based on their own particular clinical picture and their life, and that this just comes with the territory of an acoustic neuroma. 
     And to the second person who replied, thank you also.  I did talk to my doctor, and I also saw him after the second severe episode this summer.  I think this is one of the decision points...whether the symptoms are too disruptive to continue in W&W. I will know more after my MRI in two weeks.  I'm glad you didn't experience the vertigo problem during your year before surgery. I hope that you are free of all that now.
     Again, thank you for your help and guidance.

[john1455]

The symptoms you described are just part of the "affliction." There are no triggers and these symptoms can pop up out of the blue at any given time. That is just the nature of the beast. The tumor is attached to the trigeminal nerve and this is just how the nerve responds, causing hearing and balance issues.

[v357139]

So what happened with your MRI Melissa?  What are you thinking?

[ewhitese]

I spent three days immobilized with vertigo in august, I couldn't open my eyes without throwing up.  I lost an entire day, couldn't tell when it began when it ended.  I have know idea what triggered it and have not had one since.  I got the meclizine etc. to prepare for the worse and nothing.  If this were an on going event for me, I would question watch and wait as my preferred status and explore treatment options at this point.   

[ANGuy]

Here is the way it was explained to me by my neuro/oto Dr.  The balance nerve looses its function.  Ultimately it will loose 100% of its function when they cut it out during surgery.  The attacks or episodes are when the nerve looses a significant amount of function suddenly.  For instance, mine was estimated to be functioning at 50%.  If I get it operated on now, it will suddenly drop to 0%.  Over time, it will step down to 0% anyway and would be easier to take.  In a perfect world, the balance function would diminish slowly and we wouldn't get sudden episodes.  My Dr told me that since my function has diminished so much at this point, it has reduced my likelihood of a future attack and that if I get surgery my balance recovery would be pretty easy.

Based on this explanation, waiting doesn't hurt anything regarding balance.  There is no balace function in the AN side to be preserved like there is the possibility of preserving hearing because the nerve is sacrificed in it's entirety.

[Melissa]

Thank you all for your responses yesterday and today.  The holidays and January flew by and here we are in February.  Hi v357139.  My MRI showed no growth.  I was relieved, but as you said "ewhitese," I have moved more toward considering the translab surgery and some away from maintaining my watch and wait status because of the vertigo attacks. Also, I have phenergan suppositories which I think are better for the nausea.  The meclizine used to make me sicker when I took it for motion sickness when I was a child.  I haven't spoken to anyone who has used it for vertigo attacks, so I've been reluctant to use it. My ENT prescribed it for me after my attack in July, and I did get it filled.  But the balance doctor I saw in September said that she did not think meclizine would help my vertigo. The phenergan helped with the attack in October. I think it stopped the vomiting.  I hope you don't have another episode, ewhitese.  Three days of it sounds awful.   

I had another horrible vertigo attack mid-January.  I had gone to the mall to exchange something and began having vertigo when I stepped out of the stairwell into the cavernous ground floor of the parking garage. One of the webinar presenters (I think it was Patrick Shumrick) mentioned that sometimes people with vertigo can experience it in large warehouse types of structures, like Sam's.  I remembered that, so I went to the wall to get my bearings and thought I'd be ok.  By the time I got inside, I realized this was going to be an attack, called my husband to come get me, and made my way to the restroom.  Someone went to get the store manager, and my husband arrived to get me home. Being sick like that in a public place pretty much horrifies me, but thank goodness I was able to get to a restroom.  It is sort of like rock-star status being wheeled out in a wheel chair through the wedding dresses and formals! Ugh!!! I'm hoping that was a one-time experience!

ANGuy, thank you for the  neuro/oto Dr.'s explanation.  That makes sense. had a VNG eval in August.  My vestibular nerve impairment is 41%.  Maybe it has to get to 50% or more before I stop having these attacks. I went to another balance therapist in January to get some exercises to strengthen my good side.  She told me that the vertigo was caused by the otoliths being in the semicircular canals, and gave me the Eppley maneuver to use when I have vertigo.  My neuro/oto disagrees, as do I, that the otoliths are the cause of the vertigo.  I won't be going back to that balance therapist.  My doc keeps saying, "You have a tumor on your vestibular nerve. It is causing the problems."

I am interested in the decision-making process people go through when moving from W&W to a treatment option. Yes, if I am on the almost done side of having vertigo attacks, then I think I can endure it, if they are not extended over days, like some of you have mentioned.  But, I am concerned that it may be more difficult to not damage the facial nerve the longer I stay in W&W.  Where are you all on that issue? What have your doctors told you?

Ok...this is way too long, but I wanted to respond to you all.  I hope your New Year is going well and that the vertigo is stays at bay.  I do appreciate having people to talk to about this.  I appreciate all of you.

Peace, Melissa

[ANGuy]

Yeah, your problem is the tumor, not the little crystals in there. 

Phenergen works, but it must be refrigerated.  Meclazine works, for me, but I can keep it on me.  I also keep diazepam on me and a zophran.  I keep one of each in one of those keychain pill canisters you get at CVS.  My neuro/oto said for me to skip the meclazine and just use the diazepam along with the zophran.  I don't know which one of the two (mec and diazepam) works since I have been popping both together.  If I get another attack, I'll just take the diazepam and the zophran.

Having the meds with you will go along way to alleviating the anxiety of not knowing when an attack may come.  It is very comforting knowing that if I get one away from the house, I can pop a zophran and know I won't be heaving my guts out over and over and that in time, the diazepam will clear up the dizziness.

I have been getting these attacks for coming up on 9 years now.  In total, I have probably had half a dozen of them.  They are very few and far between, but until I got zophran, they were really awful.  I had to go to the ER, wait there for an hour or two puking into a bucket because these things never happen during regular office hours, until they could get me in and give me an IV of phenergen and diazepam which would work right away.  Now I can handle them at home.  I had one since I got the script for zophran.  I chewed it up and instantly knew the nausea and vomiting had stopped.  Zophran does nothing for the dizziness, so that is where the other stuff comes in.  I took the diazepam and meclazine and laid down and the dizziness stopped about an hour later.

WW is a decision for sure.  In my way of thinking, the dizzy attacks are independent of any decision to WW or not as they will stop when the nerve is dead, when the nerve is cut, or I may never have one again anyway.

[Melissa]

Thank you again for the detailed information of how you are managing these episodes, ANGuy.  I will discuss with my doctor the possibility of having medication with me at all times.  I think that would help to quell my fears of having another attack while I am at work or out and about.  I do have another question.  Did you start having the episodes in 2006, but weren't diagnosed until this past June?  Or have you had 6 episodes since June 2014?

[ANGuy]

Sorry for the lack of clarity.  I had my first dizzy attack in '06 and the others have been spaced out between over the years.  Initially I was told it was just an ear infection by the ER Dr.  I never followed up because it was over in a matter of hours, the meds worked and I guess the attack itself was over by the time the meds wore off and I went a couple of years before I had another one. 

By the time I have several more over the years, I figured it was basically a normal symptom of an ear infection.  I've had ear infections as a kid, and with allergies and living in the pollen capitol of the world, I figured it was just all related to clogged E-tubes.  It wasn't until last year when my left ear basically stopped hearing at all that I went to an ENT.  They figured it was Meniere's but sent me for an MRI just to rule out an AN.  The MRI gave me 20/20 hindsight as to what was really causing the dizzy spells and "sea-sickness" over the years. 

BTW, my hearing bounced back a couple of weeks after it pretty much failed and has been close to normal since.  My ABR leads my nuero/oto to think my hearing will ultimately be a gonner no matter what I do since the ABR showed the nerve function to be "bad" in his words.

[bethtretrault]

Melissa-I had dizzy episodes for years and then out and out vertigo December 2013. It was bad enough for a 3 day hospital stay. The CT scan showed nothing but the MRI that was done right before discharge showed a small AN. They said the vertigo was due to the crystals being out of place. Since then I have had 2 more episodes and they-both MD and vestibular therapist - did something called the ______ (can't remember the word)-Pike where they have you lie down and they turn your head and watch your eye movements. From that they said it was the crystals not the AN . This doesn't make sense to me but I guess the eye movement only happens if the crystals are out of place? I take Zophran for the vomiting-it really helps. The seasick feeling doesn't go away for days though. I'm going to take AN Guy's advice and try Benadryl.I do worry that the crystal problem is in my right ear and the AN is in my left.I wonder what happens if you have no functional balance apparatus.I don't want to find out.I think maybe having both issues makes the bad feeling last longer. The Epley does not make me feel instantly better and often leads to a prolonged icky feeling that lasts for days/weeks. But I feel good today! I am grateful for that.

[v357139]

Melissa,
On whether damage is happening, each case is different.  My impression is that sometimes things get worse during watch and wait and sometimes they do not.  I waited and did get additional problems that thankfully were not permanent.  Your doctor says the tumor is causing problems, that sounds believable.  It is possible for damage to get worse even when the tumor does not show growth, because the nerve is so tiny.

I am assuming you would prefer not to have surgery if you can help it.  Did you also consider radiation treatments like Gamma Knife and Cyber Knife.  They are very viable alternatives for those who want to avoid the risks of surgery.
Rich

[Gearbox123]

Hi Melissa, I thought I would reply to your post, because  I thought we had some things in common. I also got diagnosed with 3 mm vestibular  swannoma in April 2012, it started in early Jan 2012 , It felt like a just got off a ship , fullness in my ear all the time and a lot of headaches,  earaches, and sometimes pain my jaw. Unfortunately ,later that year I started to have abnormal involuntary movements of my trunk. I went many neurologists and finally I was also diagnosed with rare form of dystonia, just this March which is a movement disorder. My Doctors will not touch my now 4 mm A.N at this point because of the size, but also because of my movement disorder. They all seem to agree that a tumor on my balance nerve isn't helping, but. I remain postive and upbeat. My other reason to reply to you, is the medication I am taking for my movement disorder, has also helped my headaches and fullness in my ear, but not sure if it is creating more dizzy spells for me, or just my tumor. I found that information that the others gave you about % loss of the nerve very interesting. I wish I could get my tumor removed, then, I could once and for all rule out the movement disorder, but that is not going to happen anytime soon for me . So sorry for the long text. I wish you well,with what you have going on. P.S the medication I take is called Orphenadrine 100 mg E .R, it has antihistamines products and also a muscle relaxer property. I find the antihistamines work well for the fullness and ear pain. I hope you feel better. Pete