Help

[KBridges]

I am so frustrated with my lightheadedness. I'm in the wait and see pattern, but I don't know if I can take this much longer. I only have pure dizziness( room spinning ) once in a blue moon but I seem to have the lightheadedness and inability to focus while moving all the time. This makes my neck feel tired from carrying around a head that feels like it weighs a hundred pounds. Anybody else have this feeling and what can I do ?

[ppearl214]

K, it is my understanding that your AN has not been treated and you were recently researching your treatment options for your small AN.... where does that stand now? Also, keeping stress down will help offset (although, not entirely) symptoms.

some may be stress related. Have you pursued treatment options or as you continue to wait/watch, there are stress relievers you can do to help minimize the symptoms?  The "head that feels like it weighs a hundred pounds" isn't typical (not saying it can't happen, but not typical) for AN of that size (my understanding is that it is under 1cm but it's percise location, to me, unknown)..... to my knowledge.

take a deeeeeeeep breath... hang in there.
Phyl

[Melissa778]

I have had the very same issue for quite some time.  I am having mine AN removed translab next month.  In the mean time I have tried various different prescriptions and over the counter motion sickenss medications.  Mostly they just make me tired which at times makes my "spinnies" worse.  I try to lay down WHENEVER I can and close my eyes, even if its' for 20 minutes.  I have a great boss who lets me lay my head down every afternoon for 20 minutes.  I work with a computer all day and my eyes get buggy and I get dizzy alot working.  Every couple of days I take medication to "help".  But mostly I try to rest whenever I can.  I find that fatigue and stress makes mine much worse.  I have tried Meclizine, Anavert (sp), valium, and over the counter things like dramamine.  THe valium actually is a very low does and I take it every 3 days or so just to relax me and help me unwind and that does seem to help.  Best of luck to you.  I know how it feels.  I'm not able to read as much as I used to and I used to read a book a week, I dont' drive anywhere except to and from work and other absolutely necessary destinations....I get dizzy when i drive at times.  I woudl talk to your doc and see about getting some sort of medicinal help.  But like I say, they all tend to make me tired which in turn makes me more dizzy unless I am able to lie down for awhile after I take it.  but everyone is different, maybe it would be of some benefit to you.  It's worth a try  



Melissa--spining round and round on the merry-go-round

[Jim Scott]

K:

I'm sorry to learn of your problems with disequilibrium/vertigo, etc.  No fun at all.   

I checked your previous posts and see that your AN is 9mm, which is tiny (as acoustic neuromas go) but it may be compromising the vestibular nerve.  You may also have an infection of the vestibular nerve, but as I'm not a doctor, that is pure speculation on my part and not to be taken as a diagnosis, just a thought.   These symptoms, including the fatigue, are not common with a small AN, although not completely unheard of, either.  When discussing an acoustic neuroma, location can be the most important factor in determining the cause of specific symptoms, such as your's.   This factor (location) may be the culprit in your case. 

I would suggest that if the dizziness, lightheadedness and inability to focus are severely impacting your quality of life, treatment to destroy the AN may well be advisable.  Non-invasive radiation would seem to be the way to go but surgery is also possible.  These are decisions made between you and your doctor.  You should make him aware of how much the dizziness/lightheadedness are affecting you and that taking drugs to mask the symptoms is not helping.  If your doctor cannot (or will not) help you, change doctors.  AN's can be treated and even though yours is quite small, it shouldn't be allowed to negatively affect your life to the extent it has.  It may be time to cease watching and waiting and take positive action.  Again: talk to your doctor...soon.

Let us know what happens and how you're doing.  We care and want you to remain connected. 

Jim

 

[Sam Rush]

Another opinion:

If you are relatively young, and in otherwise good health, then radiation would NOT be the way to go, as no-one really knows the long term effects of radiating benign tumors like AN's. Microsurgery would get rid of it, and in experienced hands, one that size has an almost zero chance of recurrence.

(Phyl, better make some popcorn)

Sam

[ppearl214]

oh, Sam... you really REALLY don't want to push my buttons today... trust me... don't even go there!!!!!!!! Radio is a VERY viable treatment option for AN's regardless of age........ too many of us as walking proof... AND most importantly... it is a personal decision, based on each person's situation.....  it is not for us to sway someone's decision one way or another... it is up to us, as fellow AN'ers, to share in our experiences and let the person decide for themselves....

Sam, don't do it... trust me on that one.......
 

*pulls out 12' bullwhip and sits back*
Phyl

[KBridges]

My doctor has recommended radiation. I'm sending my mri and hearing tests to House. I have been told by one doctor that a small AN can cause extreme dizziness because it causes both sides to work against each other. He said as it grows it will shut down the one side and the other side will compensate. Anyone else heard of this?

[cindyj]

Hi K,

Not heard of it, necessarily, but I experienced it...my dizziness/vertigo started about six years ago and it was awful!!!  I ended up in the emergency room at one point due to being so dehydrated from being so sick from the vertigo.  I lived on antivert for many months - it eventually did get better, though I still suffer mildly from it...I know now, from what I've learned since being diagnosed a couple of months ago, that my brain must have finally just compensated for the tumor which would have been very small at that point.

Hope you can find relief soon - it really is a horrible thing to have to live with.  By the way, I sent my MRI to House and surgery was recommended, but I have not made any decision on treatment yet.  But am so glad to have found this site to hang out in in the meantime.  Take care,

Cindy

[ppearl214]

Hi K,

HEI works in conjuction with a GammaKnife facility, but HEI focus is microsurgery... just FYI.

Please keep in mind one thing... AN's tend to sit on vestibular nerves.... thus... our balance, regardless of which treatment option chosen, can be affected.  I know of those that had surgery... and radiation/radiosurgery... and balance can be a major issue for most AN patients. Please see the "Balance" forum here for further info.

Phyl

[thornapple]

K>>>I have an AN inside my cochlea, so they are going to nothing. It is destroying both hearing and balance.

So I am living with it. It is extremely unpleasant. I feel for you. It sucks like a tornado.

These are my coping mechanisms:

Walk a lot. I mean A LOT.  Walk for hours outside, over hill and dale. It helps the balance system on the other side learn how to compensate for what is dying on the other. I was surprised what a difference this makes for me.

Get a lot of rest, and reduce stress as much as possible.

Try to avoid things like energy drinks and lots of coffee and sugar, which cause your blood sugar to go whoopie and then crash.

Eat really good food; fruits, veggies, whole grains, regular snacks, about 6 times a day. Keeps your blood sugar on an even keel.

Valium will actually calm the vestibular nerve down and stop vertigo. It is habit forming, but if you don't make a habit of it, you won't form a habit. I only take it when things get really bad. Valium will also make you dizzy, so a little bedtime dose is what I usually use if I had a bad day.

[KBridges]

I just want to say how refreshing this forum is. Thank you for your responses!

[ppearl214]

Valium will actually calm the vestibular nerve down and stop vertigo. It is habit forming, but if you don't make a habit of it, you won't form a habit. I only take it when things get really bad. Valium will also make you dizzy, so a little bedtime dose is what I usually use if I had a bad day.

agreed. Was on short term course of 2mg/2x day of valium for approx 2-3 wks to help the vertigo as other medicinal options didn't work...  was on it approx 4 mos post CK for short time frame. Usually prescribed for such for short term..... I believe Dr. Medbery on the CK Patient Support board has also done posts about it there.

K..... me likes the word "refreshing"... I tend to use the word "lively" around these parts!

Phyl

[Pembo]

I have a friend who is a pt....I met her after my surgery. She said she wished she had known me before surgery when my dizziness was present as she worked with a lot of vestibular patients. So you may want to get a referral to a pt for vestibular therapy. It might help......

[MaryBKAriz]

Hi,

I too am pretreatment and have a relatively small AN that is causing me all kinds of fits! Imbalance, mild nausea and dizziness being my worst complaint. The ANA booklet on balance has some exercises that I just started. Also my AN Dr gave me a sheet of exercises he is connected with Barrows Neurological and a balance center, also. I too find my BEST bet is laying down eyes closed about 20 minutes at least once during the day. From what I understand with the exercises the balance can be retrained to some extent, but to do the exercises twice a day. They make you dizzier as you do them but within a short period of time it is supposed to help.

Take care,

Dizzy Dame, Mary

[mema]

I had bouts of vertigo pre-diagnosis of AN.  Had FSR for my AN.  Still am light headed daily, and deal with bad bouts of vertigo.  Two neuro's and one ent told me some people had vertigo all their lives and it never goes away.  I guess I'm one of them.  Tiredness does effect it and makes it worse, as does stress.  I feel for you.  Hang in there.


mema