Arteriovenous Malformation (AVM) Survivors and side effects

Hello. I came across this group as I was searching for information that might help me to understand why my daughter is having the migraine headaches she is having after radiation treatment on her AVM. She was initially diagnosed due to having complicated migraines or migraines with stroke-like symptoms. She would get them maybe 5 times a year. She gets the vision disturbances, numbness/tingling in the hand, arm and face and slurred speech. She will also get dizzy at times. She had her radiation treatment in April and on 6/15 she had one of her migraines with all the symptoms. This past Friday at midnight she had another one, again around midnight on Saturday and around 6pm Sunday and today around 6pm. We had a MRI done this evening and are suppose to meet with the neurologist and surgeon tomorrow to go over the test results. I am so worried and I can't help but to search the internet for answers. Anyone out there experienced the increased number of migraines like this?

Hello. I came across this group as I was searching for information that might help me to understand why my daughter is having the migraine headaches she is having after radiation treatment on her AVM. She was initially diagnosed due to having complicated migraines or migraines with stroke-like symptoms. She would get them maybe 5 times a year. She gets the vision disturbances, numbness/tingling in the hand, arm and face and slurred speech. She will also get dizzy at times. She had her radiation treatment in April and on 6/15 she had one of her migraines with all the symptoms. This past Friday at midnight she had another one, again around midnight on Saturday and around 6pm Sunday and today around 6pm. We had a MRI done this evening and are suppose to meet with the neurologist and surgeon tomorrow to go over the test results. I am so worried and I can't help but to search the internet for answers. Anyone out there experienced the increased number of migraines like this?

@avmcbellar -- I do the exercise while I'm watch shows I recorded the evening before or I turn the TV to a music channel and that seems to help with doing the exercise without too much boredom. I think it distracts the mind a little so I can exercise a little longer than I normally would.

Hello to all. Mockinbrd here. I've thought of those who post here and continue to lurk (lol). I find it comforting to think and read about you all. It's been just over a year since my craniotomy. I see improvements in many areas but unresolved challenges too. Oops. I need to run. I'll post more later. Nothing like a good phone call.

Hi, @avmcbellar - I wanted to let you know I moved your post here to this discussion on arteriovenous malformation (AVM) survivorship and side effects where you've posted before so you can connect with others dealing with post-repair side effects and get their input. Hoping members like @mockinbrd @aadgloria1401 @karla401 will have some thoughts for you on the neuropathy that has not gone away as projected and the weight loss difficulty since the repair. @kariulrich and @johnbishop also may have some insights.

avmcbellar - has anything made a difference in the neuropathy? Have you had the chance to talk with your surgeon about her or his opinion on the weight loss challenges since the surgery?

@kiarastrong - thinking of you and your daughter.

Hi @johnbishop. That is awesome you are doing all those exercises! I have never seen the sand dune stepper before. Exercise has many benefits so keep up the good work. How do you use it without getting bored? I started home care physical therapy last week to help with my balance issues. I do daily exercises to decrease dizziness. It seems to be working. The less dizziness I have the more activities I can enjoy.

Hi @avmcbellar, I didn't exercise regularly while I was on the keto diet. Actually I didn't start doing regular exercise until early last year just prior to my right knee replacement and I just continued doing it on a daily basis. I have an elliptical and recumbent bike combo exercise machine that I was using mostly the bike before the knee replacement but then started using the elliptical 30 minutes or so a day. I recently bought a Sand Dune Stepper (https://www.sanddunestepper.com/) which I'm now using 30 to 60 minutes a day in 15 minute increments along with the elliptical. I don't get crazy with the cardio part but do it enough to get my heart rate slightly elevated.

Hi @johnbishop. I have been looking at the attached article. Seems like a simple idea to follow. Since I’m on the keto diet and a pescatarian, the five rules should not be difficult at all. I will continue to research the information before trying this diet. Did you exercise regularly while on the keto diet? I did not. After looking at my blood draw results I questioned why my blood sugar was in the high 90s. My PCP was not concerned to point it out but I am because I want to avoid diabetes. The dizziness from the AVM has been limiting my abilities. I plan to do what I can to exercise vigorously 3 times per week. Thank you for the information. I appreciate your help. I am happy you found a diet that worked for you.

Hi, @avmcbellar – Losing weight when you have health conditions can be a challenge. I tried a keto diet a few years ago but it didn't seem to help much for me. I was not on any medication at the time other than my blood pressure drugs. When I was on prednisone for my PMR, I was constantly battling weight gains which was when I tried the keto diet that I found in Dr. Terry Wahls book The Wahls Protocol. She has an amazing story of how she was able to treat her MS symptoms through diet and cellular nuitrition which helped look more at nutrition and diet for answers. I've recently this past month started an intermittent fasting program to lose weight that looks pretty promising so far. I found out about intermittent fasting from a blog - My Health Journey by @LeeAase -- https://social-media-university-global.org/my-health-journey/. The first entry that caught my eye and where I started following Lee to learn more was his entry - An Unfortunately Named Book and my interest was really peaked by a video by Dr. Jason Fung - Fasting as a Therapeutic Option.

Hope this helps!