I have struggled with depression on/off since I was 13. I have been on all kinds of anti-depressants and anti-anxiety medications. I had been having issue since my decompression in December. I saw my NL about two weeks ago and he really pushed me over the edge. He was rude and just made me feel awful. I have been put on a cancellation list at Hershey Medical Center and I am anxious to get to see someone else. I had been doing pretty good emotionally until that appt. I feel like I can't keep my head above water anymore. I know the signs enough, to know when to call my PCP. She said she would deal with the depression until it happened again, then she was going to send me back to the Psychiatrist. The last time I was at the Psychiatrist, she wanted me to do a two week day program. First of all, It is about an hour away from my house and I really don't feel like being in a group of people with depression, that don't know or have to deal with Chiari. I wouldn't be having this many issues with the depression if it weren't for the constant fight with the chiari and pain. Plus, she wants to put me on all kinds of meds. I just need an antidepressant that works and to see a therapist to talk it out. I have been dragging my feet because it seems like my life consists of doctors appts and so many "let downs." It is just so damn frustrating!
On Sunday we took my 10 yo son to Knoebles (an amusement park in PA) and I was so looking forward to it. I didn't ride any rides etc, just walked around with them and people watched. It was a beautiful day. About 80 degrees and we were mostly in the shade. It was a really nice day and at the time it felt good to be out. The next day, I slept till 1pm, napped from 3pm-5pm, then was back in bed at 10 pm. And the following day slept a lot also. I still feel like crap. Life just seems so much harder to live with Chiari. It always feels like a battle.
I would never hurt myself! I know what I need to do. It's just a matter of me doing it. I am going to call my PCP and see her tomorrow. I guess i just needed to vent.
Has anyone else had a harder time with depression since being diagnosed with Chiari? Please feel free to share your experience. I know that I am not alone in this. It is just the nature of a life long illness, unfortunately.
I'm kind of offended by Abby saying "we all suffer from depression and anxiety"...I hope you didn't mean it to come off the way it did.
Nicole - I too am from PA and Hershey Med is not all it's cracked up to be, I can tell you some very personal stories - my father died of cancer at Hershey Med when I was 13, and I have family and friends that are doctors and work in the local hospitals, etc so I know a LOT of information - but I won't post that publicly. I'd be happy to share with you in private.
I too suffer from depression and anxiety. I know how horrible it can be - those days when you wish the world would just go away, when you're so angry and you don't even know why and that makes you even more angry, the anxiety attacks that come out of nowhere - you can be driving or just sitting there at your computer and all of a sudden your chest tightens, you can't breathe, you're scared and overwhelmed you don't know what's happening but you feel so alone and want to just crawl into yourself.
I never attributed my depression to my chiari. I feel they're two separate things. I started on generic zoloft back when I was 21, then switched to wellbutrin for a year or so, then prozac and prozac worked well for about 2-3 years but then I just felt like I was having more bad days than good so my doctor switched me again to celexa. He said men don't do well on celexa but women do and I have been great, I rarely have a bad day! I've been on it for about a year or so now. I never had a therapist - I tried it once but it wasn't for me. I mostly just cried the whole time, and I just didn't like that, lol.
I think if you could find a doctor that listens to you and your needs you would be much happier. I have a doctor that is a family friend and he is amazing. He always does what is best by me and I tell him when I hate the person he referred me to and the NS who did my chiari surgery I found myself and asked for the referral from him! I can give you his information too if you'd like he's in Lewisberry PA near new cumberland. I work in Harrisburg and live in Lancaster so he's right between my home and work. My NS is in Lancaster and Lancaster has a wonderful neuroscience center if you want to look it up.
I am right there with you with the sleeping all the time - since surgery especially I am sleeping even more!! I have no idea how I'm going to handle working full-time next week! But I have great doctors that have been supporting me and since you're in PA I would love to see you get the support I have you shouldnt have to put up with the crap I did, I saw some terrible doctors around here.
Abby, I re-read your post and realize you meant that all chiarians get depressed because of their symptoms, but Nicole is talking about she has clinical depression.
And a quick story that you might relate to Nicole - the first neurologist I ever went to, was cold towards me and not a people-person by any means, and the first NS I saw gave me some intense and maybe even false information (!) that he didn't relay to the NL and I as I was relaying the info the NS told me to the NL she said "that doesn't make any sense, he didn't report that to me in any information he gave me" and just acted like I was making things up! I was SO upset I just started crying! Then she increased my antidepressant medication! Ugh, it was a disaster...even my GP agreed that both the NS and NL were both not good fits for me and apologized for referring me to them.
Don't get down for having bad experiences with doctors, you're not alone!
You are right being in constant pain causes anxiety and depression. I've read those studies. If you are already prone to depression or anxiety it makes it so much worse. I have a hampster wheel in my head that I keep very busy. : ) When your in pain everything is so much more difficult.
Also dealing with doctors I find myself worrying for days before if it will be a "good" appointment or a "bad" one. Will this doctor believe me and treat me with dignity or will he/she be like so many others and pile on to my misery. It carries so much more weight when you feel like the decision a doctor is going to make effects your quality of life so much. They don't understand. I know exactly what you're talking about Nicole.
Years ago before I was diagnosed I had a PCP tell me "You need to go have pizza with your husband" What? I was in constant pain, I had terrible headaches, my speech was slurred ect.. and the advice she gives me is PIZZA? (She ment I should go have a date with my husband because I was obsessed with my condition and not having a diagnosis) She also said some other very nasty things to me because she was leaving her practice and she could finally tell me what she really thought about me all those years.
My husband and I laugh about it now and we use it as a punchline. "Oh you have a headache? you know what you need?.....PIZZA" LOL But at the time I cried for weeks and was very depressed for a long time because I thought she believed me and that I wasn't a hypercondriac. It still effects me and it made me distrust doctors. I'm working on getting that trust back but it was devastating.
Contents Under Pressure is an excellent book. Reading it was a huge turning point for me. It gave me a whole new perspective on dealing with doctors and Chiari. Excellent advice Abby.
Nicole my advice is to read it while eating PIZZA : )
I hope this made you smile. Wendy
Abby said:
Nichole We all suffer from depression and anxiety. When you feel so much pain most of the time it gets to you. I found that I needed extra help with medication and support from family and friends. I try to watch funny movies, listen to music of all kinds, try to be around upbeat folks and have faith in God. On days that are bad for me, I try to just sleep it off. Studies have been done on chiarians and depression. If you get a chance pick up the book by Ray D'Alonza Contents Under Pressure. It is a wonderful read. Know your not alone.
I've only been dealing with this for two months and I've already had bouts of depression to the point where self-harm sounded FANTASTIC for relief. Depression has been a factor in my life for as long as I can remember. Since I met my husband things were so much better. Six years of living, thriving, making my world into something I want it to be. Suddenly, these symptoms! Going from working, volunteering, going to school, starting my own business to a complete stop. The depression cropped up and I don't remember my tools to deal with it. I am just taking things moment by moment and praying something will happen soon.
Good luck. I hope things are resolved for you quickly and smoothly.