Still looking for relief!

General
1

Still have a headache but the pain in my right eye has increased.Both stated to increase after the gamma knife. The pain in the eye is a sharp pain like something is strapping it. That pain comes and goes. The head pain is always there it increases when I bend my head down to eat fold laundry…
I have now been off my Pentoxifylline 400mg and vitamin E for 2 weeks. I believe this was the alternative to
hyperbaric oxygen therapy
I was on a 2 week regimen of steroids to help with The ring around the AVM which they believe is an edema which means swelling in the brain. I have another MRI in July to see if it is still there or gone. If anyone has any ideas on things I can ask at my appointment or ideas how to deal with the pain I’m open. I do take B complete vitamins as well as magnesium &DHA/Omega 3 vitamins.
Thank you for reading!

2

Had radiation May 7 also still having headaches off and on . My AVM is in my cerebellum. Taking steroids had a bleed before AVM was discovered with some swelling. Having MRI June 4 to recheck. Also on Gabapentin for pain . Are the vitamins helping. Where is your AVM located?

3

Hi Niyani, I am saddened to read about your continued pain. I thank God that while I had GK, I only experienced some severe headaches within a couple of months of the procedure. As I recently posted, I only have a few more days on this website and I send best wishes to you.

4

Hi Julie,

My AVM is also in the cerebellum. I also take Gapapentine 300mg. I now only take one in the morning and one at night. I was talking two of them 3 times a day. I have been on it for over a year. I can’t really tell the vitamins effects I’m sure they are helpful. I find most of them help more with the tiredness.

Thanks for replying:)

5

Hi Susan,

I have missed where you said you were signing off the site. I wish you all the best and I am very grateful for all your advice and encouragement! I will miss seeing you on the site. Thank you for for the kind words and I hope with time I start to feel better.

Hugs and Prayers to you my friend!!!

Niyani

6

Thanks, Niyani. I also send hugs and prayers to you.

7

Sending you prayers :)

Cheers,
Santhosh
Bangalore, India

8

Just reduced Gabapentin from 600 mg 3 times a day to 500 mg hoping to get back to 300 mg 3 times a day also taking 1/2,dosage of steroids everyday was taking every other day but headaches came back hoping to start getting weaned off steroids soon and blood pressure medicine. Side effects are horrible.