I am almost one year post-op from my surgery and thought I was doing much better. Over the past month I have experienced this constant throbbing as if my heart was beating inside my head. It has been getting more pronounced and I am feeling more pressure all over my head. I had another CT angio done one month ago and nothing showed up as a red flag. The neuro doesn’t know what could be causing it. I don’t know what to do next. Any ideas? I would really appreciate any input.
Sue,
Interesting because my 8-year-old daughter has a massive brain bleed from a ruptured AVM and had the AVM regrow and require a second craniotomy to resect. Last night, the neurologist sent us to ER when I called her and told her my daughter said her right temple (where the AVM problems all began) was pulsating and that she could feel her heartbeat in her temple. Without other neuro symptoms, doctor in ER wasn’t worried, though I know he’d have ordered a catscan. We left ER without any answers, but headache was gone.
I am curious what advice others can share.
Best wishes,
Tina
Hello Sue .
It seems that avms are the never ending …I can find no words .
Have you been on meds ? Are you on meds now ? Have you had your blood levels checked in the last year ? You know the hormones to vitamins to cholesterol blood tests ?
How is your blood pressure ??? Have your physicians noted?discussed any fluctuations in any of those areas ? Do you have afamily physician that you have been consulting with along your journey ? I know…too many questions .
I only know about me and AFTER the brain explosion and surgeries and meds I was out of whack as most of us can be .
Approximately one year AFTER I had my adventure I began to lose my hormones and gain high blood pressure .
Could be coincidental BUT there was a great deal of throbbing -pumping-heartbeat sounds inside my skull that prompted the investigations and as my scans were appropriate we looked into blood levels .
So when shall you call your physician to discuss other avenues ?
Be good to you . Take care of you .
Thanks for advice, Marianne. You are so right. It is beginning to feel like a never ending story. Every time I think I can put this behind me something else comes up. I am so tired of talking about this and want to move on. I am really trying not to get discouraged. I have also tried to ignore my current problem hoping it would just go away because I don’t want to deal with the fact something else might be wrong. Its pretty hard to ignore when my head is pounding so hard 24/7.
I am taking Depakote. I have been to the neurologist twice in the past month about this problem with the throbbing and bad headaches. He doesn’t have a clue. I have recently had blood levels checked at my annual physical and again by the neurologist to make sure everything was o.k with the Depakote dose. As far as I know I was told everything was normal. My blood pressure is good as well. We just had the post-op records from an MRI and Ct Angio sent to the radiologist who assisted during 2 of my embos and the cranio to see if he notices something that the radio in my home town missed. Hopefully he can figure something out. Thanks for caring and taking the time to help.
Tina White said:
Sue,
Interesting because my 8-year-old daughter has a massive brain bleed from a ruptured AVM and had the AVM regrow and require a second craniotomy to resect. Last night, the neurologist sent us to ER when I called her and told her my daughter said her right temple (where the AVM problems all began) was pulsating and that she could feel her heartbeat in her temple. Without other neuro symptoms, doctor in ER wasn't worried, though I know he'd have ordered a catscan. We left ER without any answers, but headache was gone.
I am curious what advice others can share.
Best wishes,
Tina
Sue,
Have you tried yoga?
My wife got into that a few years ago and really likes how it relaxes her. Might work better than drugs.
Hope this helps.
Ron
Thank you kindly for your suggestion, Ron. I already do stretching exercises twice a day, however, traditional yoga could be more beneficial. It’s worth a try. Also, all I take is the Depakote for seizures and I’m not allowed to take any pain meds, so that isn’t an option. There are sure times I wish I could take a Tylenol or two. Hope you and your wife are doing well.