Cloudy head...post CK

[JLR]

Hi All, Its about 1 week post CK..and my head is like in the clouds..not a headache but just feeling kinda wonky.. no balance issues just feeling not myself.. and my vision is a bit off as well. Concentration is also slightly off.  Anyone experience these kinds of post CK problems. Thanks, Joan

[sunfish]

I've had/have lots of this, over the past 9 months since CK.  Everyone is different, I think.  I don't think everyone experiences this with CK, necessarily.  On the other hand, there's a couple people on this forum who have had worse experiences with this than I have. I was initially kind of fuzzy headed in terms of concentration and ability to think clearly, but this improved over first couple weeks after CK.  It's still very, very early on for you.  I started developing more problems with this not quite two months after CK, and developed vision problems at the same time.  Over the summer, my balance gradually deteriorated and I got a constant, floaty kind of feeling.  I've seen lots of doctors for these problems, and they assure me I will likely improve over the next year or so.  I'm very active, so they're not having me do any therapy.  And there really aren't any medications that you can take in the long run which help you recover.  In fact, some medications for "wonky head" can suppress your natural ability to compensate or recover (warning: I'm not a doctor, so this is just my opinion/experience).

Rest up a couple weeks, be active, insist on good followup, and know that most people do just fine after a few months.  PM me if you would like more details or to talk, or look up my previous posts over the past several months which pretty much document my "journey."  Stay positive - I still do just about everything I did before CK, and it hasn't affected my job or my family significantly.

[JLR]

Although I have been off the steroids for a week..I have got insomnia! Its awful. And Im exhausted through the day..finally get in a deep sleep ( so I think) and then awaken at 2am and thats it..and it starts all over.  Could the steroids still be in my system? are they retroactive? Im guessing this will improve over time..No other symptoms post ck except for that vey noisy tinnitus.  Thanks!

[sunfish]

The steroids always give me some problems for a couple weeks.  Maybe some of us are more sensitive to them than others?  Maybe depends on dose?  What I finally did post-CK after a week or so to "reset" my biological clock was to simply just stay up really late, until I was very, very tired and definitely ready to sleep.  Did this for a couple nights and got back on track.  I'll bet you start feeling much better in a few days.  It took me a couple weeks to get over the immediate effects of the CK.

[JLR]

Thanks Sunfish..Im going to take your advice and try to stay up as late as possible - although Im fading fast...but I continue to have no ill effects of the CK.  It's all kind of weird..we can't see the radiation and we can't feel the radiation, wish there was a way to see what the radiation is cooking.  Thanks again, Joan

[Tumbleweed]

Hi, Joan:

I just now noticed your thread.

I had similar symptoms to yours for several weeks after getting CK. I found it quite difficult to concentrate and my emails were filled with dyslexic text (I'd never had dyslexia before). That all cleared up after a month or so, so don't worry. It's normal what you're going through.

Suggestions for dealing with insomnia:

1. Make sure you're eating lots of foods high in B vitamins. A deficiency will cause insomnia.
2. Eat lots of vegies. I sleep so much better when I've had my vegies for the day. Dark, leafy greens contain a stress-reducing ingredient called ACTH (adreno-corticotropic hormone).
3. Do aerobic exercise, preferably outdoors, to tire yourself out and reduce stress.
4. Make your bedroom as dark as possible when you go to sleep. If you need light for a midnight trip to the bathroom, put a flashlight by your bed. But don't use a nightlight in the bedroom.
5. Read something relaxing, meditate or do yoga right before turning out the lights. This will turn off any revolving thoughts and let you fall asleep easier.

Best wishes,
TW

[6pick]

Just to drop in for a minute; we use kale whenever possible. It's like, one of the darkest leafy greens, but it can be very bitter. We put a couple of leaves in our smoothie or sauté it into spaghetti sauce. My daughter puts it into salads, but I caution that you might want to cut the spine out . . . I personally find it distasteful.

[sunfish]

I'll sneak some kale into the spaghetti sauce this week . . . 

[free2be]

Joan,

My 2 cents: I'm..., thinking...10-11 weeks post CK now. I've had the wonky head issue. It now seems to be more specifically a memory and cognitive issue. It's rather disturbing. Dr. Chang indicated it is from the protein these tumors (treated and untreated) secrete. News to me! It's gotten worse over the weeks; I'm hoping it stops doing so. I don't know if it's comforting or not to know there is a "reason" for it. At least I know it isn't all "in my head." 

I have also experienced a decrease in the acuity of my vision. It's not a real issue, but noticeable and eye doctor confirmed. They are waiting to change my glasses until we see if it "settles down" longer after the radiation.

6pick, good to hear from you. How are you doing? So, I'm doing all this nutritional stuff. I have Kale in the fridge. It was suggested to me by Naturopaths to take chlorophyll and kelp (somewhat repetitious). I'm assuming the Kale would be a source of some of the same nutrients. Of course, you can get kelp and chlorophyll in pill form (not that natural isn't better but it's hard to get that much of it...maybe).

Regarding Kale. I don't care for it steamed and such, but I have found it enjoyable by sautéing it in olive oil with some onion and/or garlic and cook to desired tenderness (it takes longer than say spinach...it's much hardier).

I'm going to post something else inquiring about trigeminal nerve and CK. TW & Sunfish, would like your input if you have some.

Connie

[Tumbleweed]

My favorite dark leafy greens to steam are kale, collard greens, chard (Swiss and red) and bok choy. Great in soups, too!

Connie, please PM me a link to your upcoming post about trigeminal nerve and CK, if that's what you wanted my input on. I'll be happy to oblige, if I can add anything useful.

Best wishes,
TW

[6pick]

Hiya, Connie - seems like a long time. I'm doing great - I think   .

As expected, my Tinnitus volumes up and down at different times but its peak is louder than pre CK. My balance is still off more than before. I do notice one issue that's come up since my CK. If I turn my head in certain ways - I don't know, when I'm brooming off the patio or the kitchen floor, my neck kinda pops like when you crack your knuckles. It doesn't hurt, but it's irritating. I wonder if anyone else has that experience?

And the kale? We find ways to hide it. It's my daughter who puts it into salads . . . when she visits . . . we're grateful she's making dinner   

Something that might help us all out a bit: My sister-in-law sent me some information on a product made from cacao and a variety of blueberry. It's said to be, by way of it's processing, a healthy chocolate. I'm putting it into this thread, at the risk of derailing, because it's sold in a network marketing format and this post of mine is not about that, i.e., I'm not trying to market it. From the information, because it's processed cold, the results are extremely high in antioxidants. I'm wondering if anyone has heard of it and/or tried it. The product name is XOÇAI (pronounce sho - sigh).

Mark

[free2be]

Mark,

I haven't heard of XOÇAI. Nice idea to get healthy via chocolate...well, maybe have to add some kale to it

Sorry to hear your issues; this isn't any picnic that's for sure. I just keep saying despite these issues that I know it could be worse. Sometimes that helps; sometimes it doesn't.

Connie

[crivers]

Hello Joan,

I haven't been on in a while and just saw your post. It has been almost a month since you posted - have your symptoms reduced?
After my treatment - I tried to go back to work right away and realized after about 2 weeks that it was a bad idea - I was just not getting things done due to the wonky head, lack of concentration, and constant buzzing.

I took 3 weeks off and really started feeling better - headed back to work, got back into the routine (working out, living life, etc.). So I guess for me the original post CK symptoms lasted about 5 or 6 weeks.

I hope yours have subsided by now.

Cayce

[JLR]

Hi Cayce, Thanks for asking.  My head is a bit clearer..although some days I'm in a bit of a fog..and look forward to the end of each day. I have started getting headaches.  Not awful just annoying little bangs here and there..I'm hoping this goes away.  The pain is mainly on the right side behind my ear. I was taking tylenol which was ok..but today I needed an Aleve which worked great.  The noise level is unreal. It is worst in the evening.  As I type ..its just so loud.  But this too shall pass. 
I read you have that wonky feeling again..its just so hard to concentrate. I hope that it subsides. Happy New Year, Joan

[sunfish]

I tried kale over the Christmas holiday, due to this thread.  Thought it might be bitter, as suggested here.  To our delight, we found that it was quite good!  We used kale sold pre-prepared in one of those bags.  There was a recipe on the back for kale, diced/chopped tomatoes, and italian seasoning.  Very simple to cook, and awesome to eat!  Thanks!