horseshadowrider
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Registered: 03-2008
Location: Washington state
Posts: 1961
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Tips to help avoid neurological flare ups!
One idea that might help you is to try wearing a soft cervical
collar. It's amazing how much this can help, along with lifestyle
changes and figuring out what makes what hurt worse. Nothing can cure
the Chiari or completely take away symptoms, but it is proven that as
humans, we just plain do certain things that make us feel much worse.
So, you might look at things you are doing and see if there are any
modifications that can be made. If you work at a computer, perhaps
adjust the heighth of the monitor, assess your posture (this is a BIG
one according to Dr. B when I saw him for a follow up, how posture
can really make us feel better/worse). Get up from the desk
periodically. Don't try to push or bull your way through work. Rest
at home as much as possible. Cut yourself slack as much as you can.
And then cut yourself some more.
If you are lifting, stop. AT least, as much as you can. Try to limit
lifting to 10 lbs or less until you hear different from your expert.
About the collar, if you wish to give this a try, go to a Medical
supply store or Physical Therapy outfit and ask for a soft C collar.
Cost about $10. Have it fitted for you so that you pick out one where
your chin is held pretty much level, NEVER high at the chin to where
it is hyperextending your neck.
If you have to choose, select one that is too tall rather than too
short, and then take it home and open up the covering and, a little
bit at a time, cut the heighth down to the perfect heighth for you.
You can cover these collars with old silk scarves or whatever to make
them cooler and a bit more "stylish." You can sew up easily pieces
of fabric into "tubes" which fit over the collar and that way, they
can be changed off for washing etc.
Doctors will usually say that wearing a collar 24/7 is
counterproductive. Many recommend 3 hours on, 3 hours off. Until you
hear more definitely from a CM expert, you can try it and see if it
helps. The most benefit you will get is that it will, at the least,
remind you not to flex or extend your neck.
Avoid at-home activities that flare things up: no painting ceilings,
no roller coasters, again, no lifting. You might find that doing
things that raise your blood pressure and heart rate really make
everything feel much worse, like jogging or aerobics.
One very effective tool is to keep a journal of each day, what you
did, what meds you took, and how you felt. This will help you to
notice exactly what is causing you to feel bad. Again, this doesn't
mean lifestyle changes can cure what you have, but they can make a
huge difference in managing your pain and discomfort. With headaches,
often the C collar will go miles toward giving you some relief.
One tip given to me that I use all the time now is to drink from a
straw. This keeps me from extending my neck to get the last dregs
from a glass or pop can. Avoid Valsalva manuevers such as straining
on the toilet, lifting heavy things which cause you to strain,
holding your breath (NO swimming under water!), vomiting etc...
Swimming is another topic: if you do it, watch what you do as far as
what kind of strokes. You probably want to avoid the crawl, the
breaststroke and any other strokes which require you to crane your
neck.
It sounds hard, but you CAN make a difference. There are lots of
great tips, I believe, in the FILES section of this site.
nausea: have you tried ginger ale? Ginger snaps? I've heard ginger
drops are good, but I haven't found them yet. I have powdered ginger
and when I experience nausea, which I often do, I put ice cubes into
a glass, put about a half tsp of ginger in and some Splenda and stir
up well, and using the straw, sip away. It takes very refreshing and
really can help nausea!
The hardest thing to do, it seems, is to recognize that you can't do
the things you always did. And it feels very distressing and yes,
hopeless. But you hopefully can find a way to manage and you might
start feeling a lot better if you start recognizing what causes
flares to happen. They happen to all of us...but those who navigate
thru all of this the most successfully seem to be the ones who face
up to what is going on, and then make the changes that will allow
them to enjoy the really important things in life!
It's normal to feel hopeless but it comes and goes and you learn from
each new day. it sounds like your surgeon locally doesn't understand
Chiari at all. Stick to your guns, continue to learn about CM,
advocate for yourself and battle for your health. Your job is
important, but your health is your full time job!
---
Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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5/20/2008, 8:10 pm
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horseshadowrider
Head Administrator
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Registered: 03-2008
Location: Washington state
Posts: 1961
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Re: Tips to help avoid neurological flare ups!
I just remembered to mention that peppermint is also good for nausea. Just having a mint candy in the pocket can help change how you feel...sometimes!
Any other tips, feel free to add to them here.
thanks
V.
---
Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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5/20/2008, 8:21 pm
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