First of all i would like to send my regards out to each of you reading this; if you are reading this that means you have been afflicted with a horrible condition- but as you can see on this site- you are NOT alone!
I am not one to use sites, discussion boards, or even facebook for that matter, so this is something outside of my norms but i feel it necessary for me personally, and i hope that it may help at least 1 other person out there…
History- My first bleed occurred on Feb 3, 1999 when i was 14 and happened as i was lifting weights. My 2nd happened a month or so later the day i returned home from hospital and i went right back in for another couple weeks. I have had something like 15-20 bleeds in all. I have had 2 doses of radiation (max allowable), something around 10 embolizations, brain surgery (about 5 1/2 yrs ago) to remove what was left, and a subsequent stroke following the brain surgery.
Since then i have been doing my best to live my life, but it has been very difficult. Physically the only thing that i have lost is partial eyesight out of my right eye - maybe 35-45% loss. BUT the physical is not where my problems lie. I still have headaches every single day of my life, though, they have definitely changed thru the years. I was on pain medication for well over 15 of the last 20 years, only coming off of it within the last year. Basically i got tired of the side effects… which leads me to medications, what they did, how they worked (or didnt work), and side effects i have experienced.
Medication: So like most of you i have been on a plethora of meds. pain meds, blood pressure meds, anxiety meds, and another group of meds which the name escapes me (depakote, topomax, and many others in this group of meds). Last ones first: depakote, topomax, etc - I HATE THESE MEDS. Doctors kept telling me that these will help, or if one doesnt, the next will. Well that is FALSE - remember they call it PRACTICING medicine for a reason. Every one of these meds made me a full on zombie, i couldnt think, my coordination was gone, it felt like pure evil. Therefore, all the doctors could do for me was keep me on painkillers for year upon year and about a year ago i got to my wits end from taking narcotics constantly- I just could not think correctly and i missed my brain, so i made the decision to go off of them entirely and try and find other avenues. What i ended up doing was trying marijuana to help out ( I have tried CBD too but with ZERO help). I know there are many contradicting opinions on this, both for and against, but i was willing to do anything at that point… and you know what this HELPED! For the first time in my life i actually felt relief!!! Problem is i live in a backwards state (Indiana) when it comes to this topic. It is highly illegal here, but relief is worth the price to me and i will never look back. Another thing i just recently found were natural remedies that my professional doctors scoffed at when i inquired about them. Currently I am using peppermint oil, lavender oil, and bergamut oils. There are tons of these out there and i am just beginning to get into 'em, but so far i am CERTAIN that the peppermint oil helps more than any of those depakote/topamax ever could have. I am getting actual relief for the first time in my life!!! Seriously! The marijuana keeps me relaxed- but with me personally, an actual boost in energy too! I dont feel stupid like narcotic drugs (vicodin, lortab) made me feel. When i get headaches i apply oils to my temples and neck and get quick relief. And of course i still have to take blood pressure meds.
Work: This may be my biggest struggle to date (other than headaches obviously). My whole life i have been a hard worker, always the best at every job ive had, not bragging just stating a fact. But this fact has made it worse for me because i will work too hard, ignore side effects of doing so, and eventually wind up in the hospital (I still end up in the ER once a year or so to get morphine shots). So because of this I havent worked in over a year, i have no insurance, i have no money, i still am forced to live with my parents on our farm. I HATE IT! I just want to be able to make money and support myself and live as normal a life as possible- but apparently that is not in the cards. All of this has led to an extreme anxiety problem… been a struggle just to put this into words. BUT that is what life has given me…
All of you out there who feel the same or similar ways- we arent alone! I will try to be proactive on here, my new years resolution. If i can do anyting for anyone i sure will. My best wishes to everyone on their road to recovery. They say a recovering alcoholic is always a recovering alcoholic, well recovering from an AVM is the same i think. Take it one day at a time. Do not get overwhelmed. Try not to stress for it only makes everything worse, find your center. I love ya all.
PS - Find a hobby, skill, etc - something that makes you happy and pour your focus into that. When i was recovering from the brain surgery 5yrs ago, and recently out of the hospital i found mine. I would fall asleep on my balcony and one nite i witnessed a red fox coming onto our property (they are pretty rare out here nowadays). As I watched that wild animal i became enamored with it. 2 years later when i was healthy enough i adopted a silver fox pup. I have poured my energy and love into that little turd of an animal. I would not be where i am today without her in my life… just some food for thought.