Good news/bad news!

Hi all. Over the past weekend I began to get intense shooting headaches behind my right eye that varied in intensity and frequency. At night they got very intense and painful and I ended up experiencing left arm numbness/tingling with it. After consulting with nuerologist on call I went to the ER and proceeded to have a CT scan. After a little while it was determined I should be transferred to downtown Boston (the primary hospital of my avm care). While there I had a CTA scan done and was informed the scans looked considerably better then my previous ones and that the radiation from two previous Cybernkife treatments was working and had shrunk my AVM! Bad news was that due to the change in size of the AVM it’s now causing painful headaches. Has this happened to anyone else on their journey to being AVM free? Do we really have to go through more pain to ultimately have the healing we so desire?

Hey Keith,

Good news it's working for you.. Hopefully this will pass once it's run it's course.

Good to hear the CK treatments have/are working on your AVM - YAY!!! Sorry to hear about the resulting bad headaches though. Did the ER/hospital inform you of what to do for the horrible headaches? (Maybe & hopefully the headaches won't last long!)

Basically I just have prescription pain meds to take. Either Fioricet or Percoset depending on the severity. Not sure how long this will last or when to expect it again. I’m happy with the news but the pain has been excruciating at times.

Cindy Phillips said:

Good to hear the CK treatments have/are working on your AVM - YAY!!! Sorry to hear about the resulting bad headaches though. Did the ER/hospital inform you of what to do for the horrible headaches? (Maybe & hopefully the headaches won’t last long!)

I have had the same issue since my surgery. i have had head aches / migranes for years but since the surgery the intensity is more severe. they told me they should lessen over time hopefully. but man when it hits it hurts like hell!! they told me to go back and see my neurologist. i already take meds to help with the headaches. if i hear of anything new i will let you know. congrats on the good news though. i was hoping with the surgery the headaches would get better or go away, but only time will tell.

Tonna

Understandable about not knowing what to expect. Breathe & try not to stress/worry about it too much, as ‘highly emotionally-charged situations’ increases BP… and remember, it’s the same amount of blood trying to travel through a smaller space (smaller vessel) now, so that may be the cause of the headaches. Hopefully things will calm down for you soon. Try to remain calm & chilled out (I know easier said than actually able to do with everything life throws our way - :wink: ) and hopefully that will help. Take care! Good luck!

Keith S said:

Basically I just have prescription pain meds to take. Either Fioricet or Percoset depending on the severity. Not sure how long this will last or when to expect it again. I'm happy with the news but the pain has been excruciating at times.

Cindy Phillips said:

Good to hear the CK treatments have/are working on your AVM - YAY!!! Sorry to hear about the resulting bad headaches though. Did the ER/hospital inform you of what to do for the horrible headaches? (Maybe & hopefully the headaches won't last long!)

Thank you all for your replies and Cindy that is great advice although I confess easier said then done as I’m sure you know firsthand! Thanks again!

Cindy Phillips said:

Understandable about not knowing what to expect. Breathe & try not to stress/worry about it too much, as ‘highly emotionally-charged situations’ increases BP… and remember, it’s the same amount of blood trying to travel through a smaller space (smaller vessel) now, so that may be the cause of the headaches. Hopefully things will calm down for you soon. Try to remain calm & chilled out (I know easier said than actually able to do with everything life throws our way - :wink: ) and hopefully that will help. Take care! Good luck!

Keith S said:
Basically I just have prescription pain meds to take. Either Fioricet or Percoset depending on the severity. Not sure how long this will last or when to expect it again. I’m happy with the news but the pain has been excruciating at times.

Cindy Phillips said:

Good to hear the CK treatments have/are working on your AVM - YAY!!! Sorry to hear about the resulting bad headaches though. Did the ER/hospital inform you of what to do for the horrible headaches? (Maybe & hopefully the headaches won’t last long!)

Hi Keith, How you doing now? I’m 8 mo into GK and the last week or so I have been starting to get daily headaches.

Hey Keith! Keeping you i prayer. I agree.I have headaches and pains every day but I am ok?! I am grateful and blessed to be aloive. I am planning on getting up to Boston this summer so hoping we can meet! xoxo Mare

Hope this is a temporary thing and passes fast. My avm friends say you will always have something, headache, dizziness… I get a headaches almost every day but, they don’t last long and I can tolerate them without any meds. Sometimes I do have to take regular Tylenol. Headaches, dizziness…for me is my life. I don’t think about it anymore and I thank God for all my blessings. It is hard though when your in pain, you just get so tired of it all. Hang in there. grace

Thank you Mare for your prayers. They really mean so so much to me. If you get near Boston you HAVE to get in touch with me! I’d love to meet you in person. Brett, I’m praying for you. These headaches are no fun at all! Grace, Tylenol and I have become close close friends lol. I do agree with have to thank God for our blessings and move forward as best as possible.

Keith: Def! Headaches I agree are a pain but have you tried meditation? It really helps. Actually I am thinking of acupressure...hear that works tooo. so so so tired of pain medications....... Keeping you close in prayer Buddy! You have a great outlook. Util we meet in person...Peace and love, Mare