5-6 weeks post-treament symptoms

[hevreh]

Seek to affirm transitory and temporary nature of the symptoms I'm experiencing (5-6 weeks post CK radiation). I take ibuprofen for fatigue and headaches that are more pronounced than before. My big concern is exercise. As my body warms up and vascualarly my blood flows throughout, I get headaches. When walking, each step is felt as a conscusion with my head throbbing. The sun and heat also contributes to symptoms. Mind you, this is intermittent and not always happening. Has anyone been similarly impacted and for how long? I am often tired with not much energy. Climbing stairs is an effort. I want to regain my stamina and wonder if I need patience. These symptoms magnified just recently.

BTW, hearing preservationis good; balance still a work in progress but okay. Hopefully, my days are not at the mercy of these symptoms.

[Tumbleweed]

Hevreh,

Rest assured that what you are going through is normal and will be short-lived. Better days are ahead for you, and will arrive pretty soon.

I had profound fatigue (could barely sit myself up straight in a chair) for a month after CK and was extremely fatigued for another month after that. I didn't really start to rebound strongly for six months. Now, 14 months after treatment, I feel much better than I did immediately before treatment and, in fact, better than I have in 9 years. I didn't suffer the type of headaches you describe (although I did have a few very brief episodes of stabbing pain on the AN side of my head, which only lasted about one second each time); I was, however, very sensitive to sun and heat for at least two months following treatment.

You will feel much better soon. Please have patience. All you have to do is ride it out while time passes. The clock is ticking toward better days for you. This is just the rough ride you need to endure to get to the end of the rainbow.

Best wishes,
TW

P.S. If you are into natural supplements: I found that taking rhodiola rosea cut my fatigue in half. Available online and at some brick-and-mortar natural food stores. Take it in the morning or very early afternoon, as it will otherwise keep you awake at night. It is caffeine-free. No side effects (except mild insomnia if you take it too late in the day).

[ppearl214]

Hey Hevreh!

Off and on, I "rebump" this thread noted below as the conversations around here from time to time center around fatigue.  There is a brochure that I picked up at Brigham/Woman's (my other AN/Chiari team) written by Peter Black, MD and Nancy Conn-Levin.

http://anausa.org/forum/index.php?topic=3462.0

In this thread is access to a .pdf file (you will need either Adobe Acrobat or Adobe Reader... you can download free eval version at the Adobe website) which talks about how all brain tumors (malignant and benign) go hand in hand with fatigue and ways to counteract it.  Many from the forums, over time, that have read it have found it useful/helpful. Here's hoping it helps as well.

Ya know, I thought I was the only one. I had talks with my PCP about increased heart rate (due to exercise) and migraines. We have not been able to make a correlation with an AN treatment but I have met with a headache specialist at the Faulkner Headache Clinic (via the Brigham site in Chestnut Hill) and she has diagnosed me with 3 different forms of migraines. Again, no confirmation it has anything to do with my AN or treatment but its interesting that I have this diagnosis post-treatment.  She wanted to put me on Indomethicin regimen to see if it helps but due to existing GI issues, I cannot take it.  I have Imitrex 100 mg tabs for when they strike.   

We know the key to helping to fight fatigue is exercise but in the case of you and me (and others) that may get headaches due to increased heart rate, maybe start out with slower exercises such as walking, swimming, stationary bike, etc.  Maybe see at what point the headaches begin to build and then it will help identify at what point you cannot overexert yourself. Just a thought. I have tried it for me and have figured out over time at what point I can push myself before they hit.

Hang in there.  You are doing great... and great news on the hearing! Mahadevan informed me this past Thursday that as of today, for ANs treated (even before my treatment), he currently has a success rate of 100% for hearing preservation.  Hoping that stat continues

Phyl