Quick Question on how you personally do it?

would like to know from my fellow AVMers how you get up & work & function every day when your head feels like it is gonna explode and your meds make you feel stoned?

Just curious to know how each of you make it thru your days when you are in pain because I am having a seriously hard time functioning all day these days, have been leaving work early, and am afraid of losing my job NOT to mention what it is doing to my home life…

Reading your question prompted me to post one for everyone on a new drug I’ve been put on for headaches. I have had more days with than without in the last year. I feel ya. Used to use ice packs alot…I’m all about the ice packs. The pain rules everything about you, doesn’t it? Maybe you could ask your Dr. about Nortriptyline HCL? It’s made me feel human again.
I really hope you feel better.

Well i know for myself that I haven’t been able to work since 2007 when my surgeries all started. There are plenty of days that my husband gets “mad” that all i can do is lay in bed. But what else can we do right. I get depressed a lot cause my son who is 5 will ask for the old me and why i can’t get him food and etc. Some days he has to be the parent and fix him self something easy. This whole process has definitely put a strain on my marriage. But there is nothing that anyone can do to fix it. If some one knows the answer than please fill me in lol. I know this doesn’t help. But i hope you feel better knowing you are not alone in how you are feeling and dealing with this hand we have been dealt. Thinking of you, and hope it will get a better for you soon! Andrea

I get up and go to work because I feel that if I let my self stop, then I will not be able to bring myself to start going again. My wife is frustrated because I am often in a negative mood, which I beleive is a result of always feelign tired and apathetic, which are both noted side effects of some of the anti-seizure medication that I am on. So she ends up feeling down, and negative, and pulling herself away from me. We get into arguments and she’ll make comments about how she’ll just have to learn to accept that I’m always going to be negative. When she does this, I point out to her that she’s only focusing on the negative things that she sees in me, and never on any of the positive things. It’s sort of like feeling sick and saying to yourself, “I feel sick again. I always feel sick. Why can’t I feel good for a change?” but never putting equal emphasis on the the times when you feel good. For example, aside from being tired and a bit stressed out from work, I feel pretty good right now (physically).

You’re not alone, Lianne. I have been going through the same thing for 7-8 years now. The only thing I can really say is this… Don’t give up!

well I started discussion then walked away…sorry about that I find I slip into denial and ignore my AVM from time to time.
life is looking up, doc has put me on some new meds that seem to help my headaches which is fabulous, only been a couple weeks but fingers crossed they continue to improve…without that stoned feeling anyway which is nice.
Its interesting to me you should mention that about you & your spouse’s…I had the same trouble with soon to be ex husband…part of our end was my AVM and his lack of understanding what it was like to live with///I heard “get over it” adn “just deal with it” more times than I care to, it wasal the only reason it ended but for me it added more stress to a disorder that was hard enough to live with…
I hope you all are doing well and finding ways to make it thru…

Lianne you are so not alone in this! I wish I had even half the amount of energy I once did! Every day it gets better and better although I have my down days where all I do is lay on the couch. I just tell myself this is all temporary I will get past this and be my old self again. I haven’t returned to work yet, but I am very lucky to work for a company that has been very supportive. I stopped in for a visit to say thank you for all their support and to let them know I can’t wait to get back in there and work. They even payed my full health insurance premiums until my disability payments kicked in. I did let them know that when I do come back that my need for rest will not end and I may need time during the day to just put my head down. Best part is they said no problem and one of the partners even told me if I needed a nap to go into one of the empty offices close the door and take a nap. It is hard when people don’t understand especially when that person made a vow to be there for you in sickness and in health. I am a firm believer in Karma and his actions will come back to haunt him! We are alive and will heal! Focus on that!

You are alone at all. I have lived with this all my life. I had my gamma knife 13 years ago. Eight years ago I when through chemo. I am now disabled and I stay at home. It makes it easier for me now. I take topamax for the migrains and seizures and cymbolta for depression and neuropathy pain. I worked many with the migrains and the pain never seemes to go away. You just have keep working with your doctors and faith and attitude. I also meditate, listen to soft music when I go to be at night and sometimes do yoga. Eat balanced meals and get pleanty of rest and excersise. I know that I am not a doctor, but these things seem to help for me. Before all of this I was always working and had to be busy all the time. I had so much energy. Now I seem to be tired all the time. Just making the bed makes me tired and I have to rest before I can do another chore. I will not give up and you should not either. Life goes on and so should we. There is a reason for everything. Pamela

I know this sounds corny but I make myself go to work by thinking about my kids since I am a single mother and their only source of income…also, the dr gave me meds that are working better (not sure how to spell but its pronounce fyoor-a-set0 It has acetaminophen with caffeine. He won’t give me anything stronger cuz he said he never prescribes percaset or anything like that b/c people get addicted…this stuff is good cuz it helps the headache and gives u a little energy (more than a cup of coffee) Good Luck!