ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: NancyMc on April 15, 2009, 04:02:51 am
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Basically, haven't slept much since I walked in those doors seven days ago. Racing around the ozone on these steroids and worried about the crash next week? 2 am feeding resulted in near asphyxiation due to swallowing difficulties. Hard to know what's going to get me when I eat, drink, take pills.
Anyone else?
Thanks.
Nancy
Ernie, The muffins are ready.
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Nancy -
wish I had some advice for you, but I don't. I had the opposite problem - massive fatigue - post op. But then again, I only had one small dose of steroids in the hospital and didn't do pain meds at all. I'm not one for "drugs", prescribed or otherwise ;) and thankfully, I have a very high tolerance for pain.
That is not to say however, that those who need them - the prescribed ones, obviously - shouldn't take them.
Your frenzied energy is a new one for me, but I think things will get better for you once you are taken off the steroids.
Here's hoping you can get some rest ;D
Jan
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Thanks, Jan. At least I'm losing weight running circles around everyone and everything. No pain or pain meds since 30 hours post-op. I find that a little amazing. Did they really get it out of there?
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Hi Nancy!
Hang in there.....your experience brought big memories back to me. It took me quite a while before I could sleep well. I had so many nights where I tossed and turned and finally gave up and sat in the recliner while everyone else in the house slept. I was so exhausted, but just couldn't sleep. And I also had trouble with swallowing for a long time - the AN didn't cause it, but the tube sure did. I found that if I chased every bite with milk, it helped so much. It was so frustrating and I thought it would never end, but then, it did.
I was on steroids when I came home, then a few days of none, then back on them for another round due to big headaches. The insomnia lasted a long time after the steroids were gone though.
Paitence, patience, patience......I'm really getting much better about that!!!!! Funny what lessons life makes you learn, whether you want to or not!!!!
Thinking of you.....
Kathy
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The steroids and general anxiety also kept me awake post op. Hang in there. The days pass and you will get better and sleep well.
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Hey Nancy,
First of all, don't eat the muffins. We don't want to risk asphyxiation again. I'll be right there to remove them for you! ;D
But seriously, I had the sleeplessness like you. I attributed most of it to the steroids, but also to having to sleep partially sitting up. I never had a crash. I do get 6 to 7 hours sleep now each night, but never crashed to where I needed to sleep more than normal. I think the way they wean you off goes a long way to mitigating fatigue.
In the mean time, we still have some painting that needs to get done :D
Ernie
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Well, that's a relief. Thanks to all. I will be patient, but it's not easy when you are running around in circles. Just took my first cane walk through the garden paths. Such happiness. I'm being careful not to put too much in my mouth at once, but those muffins make it a challenge!
I wonder how they decide whether or not to put you on a second round. My facial movement might be a slight bit better, but it may be unchanged. They must have some expectation for twelve days post-op movement related to nerve trauma.
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Nancy,
After my surgery I couldn't sleep once I got home. I would wake up at 2am and stay up the rest of the night. Doctors tried xanax and sleeping medicine and it still didn't put me down! I would get up and walk the halls tagging my feeding pole along (at home). My family feared me falling as we live in a 3 story home. My legs HURT and ached like crazy. Major restless leg syndrome. I remember begging my husband to rub them as hard as he could. I would take a hot jacuzzi bath and that didn't help with the achy legs either. I don't know what happened to my sleep cycle because I wouldn't nap during the day either. This went on for over a month. I had dark circles under my eyes and my family had to take shifts to help out since I would never rest. I fell several times from fainting and when I would stand at the top of the stairs it felt like I was looking down from the Eifel tower and would go down on my rear to make it safely to the bottom. I read an article that said that when the facial nerve is damaged that it can affect taste and your sleep cycle! and the inner ear! Also I had to be on steroids for the brain swelling to decrease my chances of a stroke and to give the facial nerve the best chance for recovery. I was a MESS! It does get better. I will still take rx. sleep medicine when needed but not very often. Exercise helps with the restless leg sydrome and TIME/HEALING of your entire system after such a big surgery@ Be patient and don't try to over do it. If you can't sleep......try warm milk, hot de-caff. chamomile tea, light candles, read, take a hot bath, take medicine when needed to help you rest, you might try Melatonin OTC every day, be active (supervised) during the day so that you are ready for sleep at night, have someone give you a massage before you go to sleep, listen to meditation music. Trust me I tried EVERYTHING! (oh, no caffeine that includes chocolate!) Also.........try a nice glass of wine to relax you but be careful while on steroids and sleeping medicine! Hope you get some zzzzzzzzzzzzzzzzzz's soon!
Angie
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Thanks, Angie. I finally slept last night from about 9 til 2 am steroid alarm. Then I was up til 5 or 6 and another nap til 7:30, so it's much better now.
I'm tapering steroids and will be finished by Tuesday or Wednesday, so I do believe there is sleep at the end of the tunnel. We had a lot of fresh air and exercise today and have a big day planned out on the lake with picnic in the double canoe and search for the nesting bald eagles or at least a loon or two.
Life is good.
n
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Nancy,
Recipe for the muffins, please.
Angie
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Hi Nancy,
Sleep is a big problem post-op for various reasons. It was bad for me and after a while I didn't even want to try to sleep, but this was because I would wake up in pain, and then not be able to go back to sleep. Fortunately, I sleep pretty well now, as long as I don't sleep on my tumor side. That still causes pain and discomfort but at least I get a solid 7 or 8 hours of shut-eye. I imagine as you taper off the steroids, sleep will be less of an issue. Wishing you sweet dreams....
Marci
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Surgery Muffins
From the back of a bag of Bob's Red Mill Whole Ground Flaxseed Meal
1 1/2 C unbleached white flour
3/4 C flaxseed meal
3/4 C oat bran
1 C brown sugar
2 t baking soda
1 t baking powder
1/2 t salt
2 t cinnamon
1 1/2 C shredded carrots
2 peeled shredded apples
1/2 C raisins
1 C chopped nuts
3/4 C milk
2 eggs, beaten
1 t vanilla
Combine dry ingredients, add fruit, veg, nuts.
Combine wet ingredients.
Combine wet and dry ingredients just until moistened.
Fill sprayed muffin cups 3/4 full.
Bake 350 F for 15 to 20.
Yield 15 muffins.
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And here I thought you had to buy pre-made muffin mix in a box to make muffins :). Go figure!
Gonna give these a try when I have time.
Ernie
P.S. > Found the muffin recipe thread, Nancy :)
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Nancy ~
I was relieved to read your post that stated you were finally getting some sleep. I would suspect the steroids are the culprit along with some post-op euphoria. I was very fatigued during my first week home from the hospital and took many naps - but that finally faded, just as I'm sure your insomnia will soon come to an end and you'll be able to resume a more normal sleep pattern.
Jim
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Nancy,
Pretty interesting article.
SLEEP DEPRIVATION AND EUPHORIA
Sleep deprivation gives a lot of people a buzz :o. Especially in the first night of staying up, many people experience euphoria. Indeed, sleep deprivation can even be a short-term way to address depression. The effects of depression decline.
Imaging research has shown that one night of sleep deprivation leads to an increase in brain dopamine levels. Dopamine is sometimes called the "pleasure neurotransmitter :D" because of its role in so much human behavior.
Maybe sleep deprivation isn't so bad after all !!!!!! :P
Angie
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Nancy,
Same here. On Wednesday night, I woke up at 11:45 for the tampering steroid dosage, and then stared at the sealing while my wife zonked back into dreamland. I finally took a percoset at 2:30AM and that did the trick. I've had no headaches, and I was very blessed not to have any real eye or facial paralysis. So the only thing has been the balance which already feels better and the insomnia. I took at hot bath last night which really relaxed me, and then the two percosets put me down for the count. Except for the 1200 midnight feeding, I stayed asleep finally until the 2 year old wanted pancakes from mom at 5:30AM. I've got no complaints, but try a warm bath just to relax. I'm really only going to use the percoset if I can't knock off while I'm still on the tapering steroids. I also noticed that I was so happy to be home and everything was done that my mind was racing about business, fishing, and biking. I'm already biting at the bit. The only downside is that my nickname this week around the house is Frankenstein...................
Steve
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Hey, Steve, maybe you can answer my fish question even if it is fresh water on my Day 9 in my favorite place in the world thread.
I haven't had any pain killers since 28 hours post-op for level 3 or 4 headaches, and I likes me beer and wine, so last night we had a nice glass of Merlot before and an 1888 Bock with dinner, and I slept like a baby. Sorry, Angie, that was before I got the liver reminder.
I'm not tapering as quickly as you are because of my facial weakness post-op, but I'll be totally off on Thursday morning if my stitch removal appointment on Monday morning at McKenna's doesn't put me on a second course.
My balance has not suffered. I just feel like I'm fighting to stay vertical, leaning toward my good side while sitting or standing. Walking around unassisted is really no problem even turning head side to side and up and down.
Double vision left five days post-op.
Final got digestive thing going again.
I've been cleaning out the garage, organizing the barn, . . . hope I can maintain the energy level . . . this is fun!
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Nancy~
Can you head for Texas next - I need some major help in the organizational department?? :D
K