Dizziness

[Elizabeth Roberts]

The one and only symptom I ever had of my AN before diagnosis was 24/7 world-spinning dizziness that lasted a full 6 weeks. That was six years ago. I had dizzy spells, along with balance issues, here and there for the first 3-4 years after my Dx. But they usually coincided with my menstrual period and lasted only a short time, one, maybe two days.

I was treated with radiation 5+ years ago, and in April of this year I had my 5th yearly MRI which showed shrinkage in the tumor. I was elated and figured life would go on AN-worry free. This was so until 8 days ago when the world-spinning dizziness hit at 4:22AM and lasted 24/7 for 3 days. Again I found myself sitting still much of the day and *sleeping* - I use this term loosely, sitting up on a couch. By day four the vertigo was gone but the woozyness has lingered ever since. I cannot drive because the motion is too disorienting, reading and writng take 2-3 times as long as typical, not good since I'm a writer for a career.

I've talked to my neurosurgeon and he's offered to write an Rx for another MRI, but honestly why? The tumor is shrinking and this is most likely just a side effect of that shrinkage. So, wait it out is the name of the game.

I'm not really looking for any advice, so to speak, just wanted to let out a little of the frustration of the situation to a group of people I know can *get it*. My husband is dear, caring, and ever so helpful and I am so grateful for his support and love. But, he just can't really get how fuzzy-headed and disoriented I feel.

Thanks for listening. I fear I'm no longer making sense and my head is beginning to whirl, so will sign off.

Cheers,
Elizabeth   

[Jim Scott]

Hi, Elizabeth - and welcome.

Of course I'm sorry to learn that the severe dizziness you've previously dealt with has returned.  Like everyone who reads your message, I hope that this condition passes, quickly.  You're frre to vent in these forums as much and as often as you wish.  As you noted, we really do understand.

I wouldn't dismiss your doctor's suggestion that he order an MRI, just to be certain the radiated AN really is shrinking, which is quite likely.  Assuming your not claustrophobic, It can't hurt.

Jim

[Pembo]

I had that severe dizziness and it is truly horrible! The first time was for 6 weeks about 3 years before diagnosis. I was bugging my doc for a cause then it went away. The second time I had it, it didn't leave until surgery. (My tumor was 4 cm). It was much worse the last time.

I always found that chocolate helped...or so I thought.

Stable thoughts to you and I hope your tumor is shrinking away from the nerve and that's just the nerves way of saying thanks.

[lawmama]

So sorry, Elizabeth.  Dizziness is my primary symptom, so I can relate.  It is VERY distracting and it seems worse when I am most tired or stressed (the very times I usually need to focus the most!).  I hope this is only a temporary thing and you feel better soon.  Otherwise, congratulations that you have had tumor shrinkage.

Lyn

[Elizabeth Roberts]

Thanks, All.

Your support and kind words are much appreciated.

I am very grateful that the tumor is shrinking. . . that was the goal, right? Now, just wish the nerve would settle into a groove and stay put.

When I was a girl I was nick-named Dizzy Lizzy, I never thought I live up to it, though. Oh well, 

Peace,
Elizabeth

[suboo73]

I always found that chocolate helped...or so I thought.

Stable thoughts to you and I hope your tumor is shrinking away from the nerve and that's just the nerves way of saying thanks.

Hi Elizabeth,

So sorry to hear of the dizzy spell, just when you think all is going well.
I like the way Pembo said it - the tumor is shrinking and the nerves are saying thank you. 
Meanwhile, chocolate might help some too - i sure try to justify my consumption that way!

Keep in touch.
We certainly understand and are here to listen.

Sincerely,
Sue

[Tumbleweed]

Hi, Elizabeth:

I've found that if I get constipated I then get dizzier. It's intriguing to me that your dizziness has coincided with your period in the past. In both of these cases, the body is needing to eliminate waste. I may be barking up the wrong tree, but I've felt for a long time that the purer our body is -- i.e., all elimination channels open and working properly -- the less the vestibular nerve misbehaves.

Fatigue is universally noted by our forumites as worsening imbalance symptoms. Some think this is because fatigue leads to decreased blood flow to the brain. With people who have an AN, blood flow to the vestibular nerve can already be compromised by the tumor pressing on the nerve.

Anyway, my point here is that a good clean diet and staying regular seem to help alleviate my symptoms immensely. Perhaps you'll find this helps you, too.

Best wishes,
TW

[Elizabeth Roberts]

Thanks, Sue, thanks TW.

My diet is about as great as it's going to get - whole foods only, organic, and as local as possible. On top of this brain tumor, I am gluten-intolerant, lactose-intolerant, have Inflammatory Bowel Disease, and Irritable Bowel Syndrome. So, I am very in tune with my diet having done an extensive Elimination diet twice in the past 2 years. I do know that I have to make sure I stay well hydrated and take in enough calories per day to maintain energy. So, your point is well taken and I thank you for it.

Best to all,
Elizabeth

[CHD63]

Elizabeth .....

Welcome!

Since dizziness or disorientation has been my biggest issue with having an AN, I am intrigued by your post.  For me, when I am extremely tired or I have eaten too much salt (with resulting fluid retention), my symptoms return.  My theory is that my brain is swelling ever so slightly at the same time so that it is causing a return of the disequilibrium.

Best wishes and my prayer is that your dizziness will go away and stay away!  You have enough to deal with, with a regressing AN, IBS, etc.!  Let us know how you are doing.

Clarice

[wendysig]

Hi Elizabeth and welcome!

Feel free to come here to vent or for any other reason.  We do get what you are going through.  As Jim suggested, an MRI to rule out anything but your AN shrinking is not a bad idea.  And of course, as Pembo said, chocolate will help -- it helps everything in my opinion!   

Wendy

[Tricia (horsekayak)]

Here's hoping your dizziness goes away quickly.  A lot of folks have already given some great advice...watch the diet, try to "un-stress", accept that it is your body telling you somethiing (hopefully some good new!!!).  I never realized how much it could impact your life when you are feeling constantly off-key, uncoordinated, and fuzzy headed.

The reactions of those close to us can be educational and entertaining (the only way t look at it , i guess)...
I've noticed definite dizziness these past 2 weeks.,and a definite decreasei in my typing skills and my walking skills.  (I'm hittiing walls a good bit now)..my husband thinks it's all in my imagination , and that i'm just being more sensitive to things that i've always done.  I did point out to him that walking into walls is not something I've ever done with regularity, even when I was young and a party animal.  He tries to understand, and I know it is hard for him to see me like this, but it is what it is right now.

If it will help you feel better, then consider the MRi.   You have to listen to your intincts on this one, and you certainly have the right to vent, and you are definitely in the right place to vent to your heart's content!!

[Dr. Dean]

Hi Elizabeth, et. al.

I have a vestibular schwannoma that was successfully shrunk 32% by Gamma-Knife surgery in 2002.  It caused severe balance and dizziness problems that I resolved using an exercise technique that I developed (I'm have a Ph.D. in bioengineering; it's my thing!).

The exercises regains balance by “resetting the cerebellum,” sort of like a reset button.  At first it took about 15-30 minutes a day for a few weeks, but now I only do it once a month (or when my balance goes off) for about 3-5 minutes.  It works wonderfully and gets rid of the headaches the dizziness causes.  It has never failed to work for me!

  For a PDF of this technique, go to http://www.personalityfinesse.com/pdfshow.php?pdf=12

I hope that this helps you with your balance problems.

P.S.  If you don't have access to a treadmill, you can do these exercised while walking outside.

[Tricia (horsekayak)]

I wanted to post again in this topic to let you know that since my balance got worse about 2 weeks ago, (my dizziness increased, making it harder to walk straight, etc.), then I have begun to notice something interesting these past few days:  the MORE I move around, and do my balance exercises, the better able I am to navigate.  I dont bounce into people/walls quite as much!! 

The dizziness still seems to be there, but the balance portion has become better.  I do know that getting tired is "poison"...but if I move/stay active/walk without exhausting myself, it seems as though my body becomes used to the feeling and lets me move in a way that's closer to how I'm used to moving.

Gentle repetitions of "balance exercises/balance reminders" (maybe like the ones mentioned in this post) are really helping me, and I havent had treatment yet.  Am scheduled for gamma soon, but am already workiingon balance improvement, nutrition improvement, etc. NOW...it cant hurt, and it feels like it's really helping.

[CHD63]

Good girl, Tricia .....

Now, maybe you will be in a really good habit that can continue right through treatment!

Clarice