Arnold-Chiari Malformation Support Group

No, you aren't alone. I, too have headaches in the morning, but they get worse as the day goes on. These past few weeks have been especially hard for me. I have been taking my pain killers like they are candy (not really, but that is how it feels), and I hate doing so. Of course, my doctors seem to think that my Chiari isn't the problem since it's so small. Who knows?!

It's good to know I'm not alone, Well not that someone else hurts as bad as me, but that it's not just me that there is probably a reason. I know what you mean about feeling like taking the pain pills like they are candy. It seems like as soon as they find a combo that works then they stop working. I went to the doctor on Thursday of one week and she asked me if the meds were working for my headaches and I told her they were (cause they were at the time). Then on Saturday morning I woke up with a headache that was really bad that just got worse I sat here and cried most of the day and ended up in the E.R. around 2 or 3 pm. So now I'm about to leave here in a minute to go and see her again. Do you ever get depression over all of this? I have been getting really depressed lately about all of this.

Yes, I get depressed a lot. I am in the middle of a huge depression right now. My doctor started me on 2 new meds yesterday in the hopes that she can at least help me get through until I see a neurologist on the 13th of July. It's a huge mess. I was ordered not to work this weekend, so I am just trying to take it easy. The headaches are starting to run my life, and the thought of that just makes me so angry. I hope your doctor can help you. Good luck!

I know what you mean, I finished my degree in computers in December so that I would be able to take care of my 5 kids by myself on day. I can hardly take care of my kids, I barely made it through school, there is now way I could work. It makes me pretty mad. I'm trying for disability and I live with my mom, so unless I remarry a really good guy that has a really good job I doubt I'll ever see my dream come true and of course that just adds to it. Well I hope the neurologist can give you some relief. I'll be Praying for you. Good luck!

I have to say that I love this site. To know that there are others that feel the same.
I have always been an active person, enjoying life, & persuing my dreams. I was born with ACM, & always had symptoms but didnt know what was wrong. 5 years ago I had my second & last child. I had a hard time conceiving & keeping the pregnancy to full term. After his birth, things went down hill. My headaches started & my other symptoms really kicked in. 2006 the doctors found Chiari & within 4 month I went from fine to half paralyzed. I had the surgery & everything was great. The recovery was long but I was glad to be back to the point of being active & persuing my dreams I had worked so hard for. Now it is 2009. Every day my symptoms get worse. I am tired of taking meds & I am sick & tired of being sick & tired. I had to quit my great job, & now play it hour by hour. I can not drive more than 5 minutes down the road, I can not cary heavy things including my 5 year old or my 6 month old neice. I can not excerise with out hurting. Research shows that Chiari causes depression. Why wouldnt it. The pain is there & most knows & fears the future of the pains. If it gets worse what would happen. I am so affraid of what I have now & what it might do in the future. I am only 28 which is a long ways from even 60. I want to happly grow old with my great husband & my wonderfull kids. I am afraid that will not be possable to do it happily. I find that pitty makes it worse. The only thing that makes me continue is that I have great kids, & I know I have worked hard. I have found a support system to remind me of the things I can control. Being able to control something like making the flowers grow in my garden feels great. Now I deal with the fact that my 11 year old has Chiari & possable that my 5 year old has it. That feeling bothers me even more. Hang in there. Others know what you are going through. Find some good people on this site to talk to that understand. Sometimes that is best. Also, a good Alisa Turner song helps. She doesnt have ACM but she does understand being sick & not know how to fix it. Hers was murcry poisoning, but she has had to fight it her whole life & will have to fight it for the rest of her life.

Hi all - would definitely agree with the pain worse in the day thing and it's tricky balance. I tend to save stonger pain killers for when I get in so I know I can get on top of the pain then but kind of just work through it in the day as hate side effects of feeling groggy etc when I need to be alert. It is such a shame that all people with chronic pain (how many people must that be?!) cannot acess other alternatives such as alternative therapies. I have found some real benefit with a type of Tens machine (actually uses a different sort of wave called TSE) but dont know if I am allowed to mention the brand name on here?! so wont until I know not breaking any rules. found it really helpful for pain and especially fatigue. you stick 2 electrodes on yourself normally either side of neck or upper and lower back and plug yourself in! really seems to take edge off pain. let me know if anyone would like the info - I am in the UK but am sure there would be the same product elsewhere internationally. thanks for all the info everyone, Jan.