I have a congenital heart defect. I was born in heart failure and didnt come home with my parents until I was 3 months old. I had open heart surgery to repair my mitral valve at 5 years old. My valve still leaks into my lungs and will probably have to be repaired at some point when Im much older.
I had a normal childhood aside from taking antibodics before dental appointments and having to avoid caffine. In school I always avoided showing my scar or telling anyone about my heart because I didnt want to seem different or weird.
In college I had a little boy with no health problems at all. My senior year I had a heart attack. The ER doctors tried to say it was a stroke (because there was no sign of a clot) but my heart doctor figured out that it was a heart attack - only caused my spasms.
Its been a few years and no one seemed to believe my doctor (vasospasms are common in legs, etc but very rare in the heart). He had me see an adult congenital heart specialist at a university hospital. At first this doctor couldnt believe that I had vasospasms... but as we got talking and he heard that I have seizures and Raynauds disease (a circulation issue) you could see his face light up. He said that yes I do have vasospasms! I was scared that it was actually true but when every doctor wanted to talk to me I realized that maybe I should see it the way they do - I was special and different in a good way.
My bachelors degree is in Animal & Poultry Science (and I currently work in research) so I can understand the excitement of seeing a rare disease first hand.
I thought my heart was what made me special... and that my partial seizures were just a small issue that medicine took care of.
Last year I had a grand mal seizure (while on medication and on a totally normal/calm day). Then last week I had another seizure while driving (thank God it was a short one). My neurologist looked over my old MRIs and saw the AVMs. The nurse had never even heard of it. He talked to me for a long time but I still have so many questions. Like I said in another blog - Im getting some tests and see him again soon.
I feel dumb worrying about it all the time now - if Ive had them 26 years while worry all of a sudden? But I cant help it.
My doctor said while my heart and brain issues are both congenital, he doesnt think one caused the other. Has anyone been told something like that?
Should I be taking my aspirin?
My nose bled a small about this morning.... should I worry?
Aspirin thins your blood, and I find with my HHT (blood disorder that has caused multiple AVM's) it makes me bleed worse, and also hurts the AVMs I have. Maybe talk to your doctor about blood thinners and weather they will be beneficial or if they could make the problem worse. If you can take other pain killers like panadol then try that :)
Also, I have reynauds too, you're the first person I've spoken too who has it.
I hope stuff starts getting better for you. xx
Ive never had high blood pressure but I take blood pressure medication to help make it easier for my heart. I was on beta blockers but my doctor changed me to a calcium blocker because that really helps people with Reynauds. I have to say this winter I only had one day were I got pain from being cold so it might really help.
I dont know if my blood pressure medicine or Mirena birth control could affect AVMs.
My doctor once said that my heart needs to work harder because of the size of my AVM, and I probably have (had) the heart of an athlete. I always thought I had astma because I was out of breath during activity. But the last year I have more problems (my heart skips beats, or my heartbeat gets really high out of nothing.) Now that my AVM is closed and shrinking I think my heart will work normal again. The wway he explained it, it sounded very logical. But I can't explain it very well in English.
My opinion is that the one could effect the other. But since you've always had heartproblems it may not be related.
Good luck with everything!
Hi, Hilary. I don;t know much about the heart-brain connection, but I would think so since blood circulation is so vital to keeping the brain alive.
I do know that aspirin is a big no-no for us brain AVMers because it thins the blood and could cause a brain bleed! Please call your doctor and talk to him/her right away about this.
Thanks everyone. My neurologist told me that they are not in anyway related to each other. They are both congential defects so they COULD have been caused by the same thing but probably not. He thinks no one noticed my partial seizures until I was in high school because no one ever notices them in kids and I was on heart medicine (before my surgery at 5) that would make me seem tired and kinda spaced out anyway. He think my hormones probably increased them. That makes sense.... I stopped getting them when I was pregnant and they started back up less than a year ago (Im 26 now). He said its common for hormones to make seizures and migraines worse.