Coping with the bad days

[notaclone13]

Would love to hear from my fellow W&Wers about how you cope on the bad days.  After having a couple of really good, almost normal days, I woke up today feeling wonky as all get out.  Granted, I did have an upset stomach last night that disturbed my sleep and necessitated taking Imodium.  So perhaps it is due to dehydration. I tried to do my normal activities but felt much more unbalanced and semi-dizzy.  I avoided taking a walk and grabbed a cart I didn't really need when shopping today.  It is so depressing on days like this.  You convince yourself that surely your tumor must be growing at an alarming rate, or why would you feel so bad. It is tempting to sit on the couch and have a pity party, which of course makes it all worse. Thanks for providing a place to rant and complain.  I try to shield my family from knowing I feel so depressed about it.

[ANSydney]

From https://www.anausa.org/smf/index.php?topic=23693.msg979775429#msg979775429 there is an account from when I dehydrated, reproduced below:

No published research relating trigeminal pain to hydration level. We're doing it now.

The reason I asked is that a couple of weeks ago, I had the flu and vomited. I became dehydrated and drank water. The water just passed straight through. The pulsing trigeminal pain persisted. Got some Gatorade, pain went away almost instantly. Coincidence?

By the way, there is research on dehydration and swelling of brain cells, so there is some related research (a quick google search found lots of hits).

By the way, if we run a hundred of these experiments, one of them is bound to give us new information.

[notaclone13]

Thanks Sydney. The thread you directed me to has some very helpful posts. It helps to know that some of the things that bring on my symptoms also bother others.  Hot showers also bring on symptoms for me and I couldn’t figure out why. Heat and increased blood flow could explain it. My exercise tolerance has never been good do to another issue, but it is much worse now.

[Citiview]

Some people find that doing balance exercises help to improve symptoms. Even very simple yoga can help some people. I attribute my good balance to the fact that I'm on my feet 7-8 hours a day.
This is strenuous but it's what I'm required to do. I think it has helped me to stay balanced.
That being said, maybe I'll wake up one day and things will be different.
Your brain adapts to the balance difficulties from what I've read. People can see improvement with this.
I can have fatigue. I don't get angry at myself if I get tired. I just rest and restart.

[notaclone13]

Thanks Cityview,
I have been doing a few balance exercises.  Balancing on one foot or walking heel to toe in a straight line. The AN is on my right side and I notice that I have more trouble balancing on my left side. I believe the right side of the brain controls movement on the left side.  I go for a 30-45 minute walk each day and I do think it helps with balance. I tried the elliptical machine at the gym the other day and that did not go well at all. Anyone else have trouble on an eliptical machine? You are hanging on to handles when you do it, so I am not sure why I got so dizzy. Seems like your hands would help with the balance issue.  Perhaps my dizziness was due to some other issue.

[2020]

Don't hold the sadness in, find someone to share your fears with.  It'll help.  When I was first diagnosed I was bummed, but then decided to take horseback riding lessons.  Figured it would help me exercise the muscles in my core that are used for balance, and constantly challenge me to find my center and balance.  I want to be strong and not let this little booger rule me.  Riding really did deliver a lot more ease about my balance/stability. I found that taking charge and mastering balance on a strong animal was very empowering.  I don't have a lot of money, but my County had a riding stable for low fees.  Now, I challenge my balance all the time to work out & strengthen the muscles and reactions needed to be balanced.  Just worked physically non-stop for 12 days, helping a relative pack up and move a house... not a single slip or wobble.  People think I've lost weight, which is another great benefit.  Do what you can and what you are comfortable with. Share your feelings.  You might really surprise yourself and feel free again. 

[Citiview]

I think there's a difference between feeling slightly "off" and having actual vertigo which is pretty severe.
I haven't experienced vertigo with this.
Vertigo can be debilitating. I know two people, who don't have ANs, who have had episodes of vertigo and/or imbalance and have had improvement with vestibular exercises.
It is definitely frustrating...but there is hope.