Just a short rant

Does anyone else get a headache when they bend over too much? One that the only way to solve it is to lay down for a LONG time? And then it might end up as a migraine despite that? I hate it. I HATE IT, and I HATE THIS. I’m 18— why can’t I just live a normal life where I don’t have to miss out when my friends run and jump and scream and dance and be crazy because after 5 minutes my head is pounding and I feel like my neck is going to break in two!!! Why can’t I just catch a break and be normal? Why do we all have to suffer through having a CM that most people don’t even understand???

Sorry for the rant, I just got a sudden migraine and no one in my life seems to understand my limitations… Ugh. I know I sound whiny right now, but I’m in too much pain to care. I wish there was something that could help.

Okay, so the title is misleading---- this is NOT short, but I get carried away sometimes lol

Hey Laura......

This is there place to share how you are feeling..both mentally and physically..so, no need to apologize for the length of your post..you are too funny...that was SHORT..you should read some of mine! Some members call them NOVELS!!!ha, ha...

Yes, when you bend over from the waist..it more than likely will bring on the dreaded Chiari h/a..that is my experience , anyway...I try and squat (sp?) now..in order to avoid bending...

I can understand what you were saying about then having to lay down in order to get rid of the pain , or at least ease it some. It is very frustrating to say the least.

You are so young and there is so much you want to do...I am 51 yrs old ...but I do remeber those days of just being free as a bird, dancing to loud music, being goofy , ect...I am sure you are somewhat mourning that right now, due to your situation with Chiari..BUT.....

I will share with you my personal experience...I had decompression surgery Aug 08....Many of my symptoms have gotten better and some have completely gone away! It took me a while to see/feel the positive results...I guess the improvement was very subtle..anyway....I still watch what I do...try not to bend at the waist, ect..

WHere are you regarding your care plan? Have you seen a neurosurgeon?

Please keep sharing and let us know what is going on...there are quite a few people your age on this site...have you checked out the GROUPS?? there is a group for students with Chiari.

Please know that we "GET IT!!" and ALWAYS , ALWAYS , feel free to share what you are feeling on this Discussion Board..we are all in this Chiari thing together!

Take CAre!!

Lori

Like Lori said that was a short rant. ( Love ya Lori ) We all here can relate even though we are at different ages and stages in our Chiari journey. Be glad of the friends you have that understand and support you those will be the ones you'll have a lifetime. I know its hard now but you do have better days ahead. Learning to avoid and doing things different helps. Let your doc know everything and make sure the doc knows enough about Chiaris to understand and treat you. It is tough but sometimes you just have to push thur it. I'm 42 with three kids and I try to be as active with them as possible even when I have one of those h/a or cant see or walk straight. Remember you are in control and can learn how to overcome. Keep ranting keep fighting and keep smiling.

The gratitude I feel right now… It’s unbelievable. Lori, I’m supposed to be seeing a neurosurgeon, but my quack of a NL doesn’t seem to be in any rush at all to make the appt-- it’s been nearly a month and no word yet. I try squatting, but sometimes I forget and wind up with a migraine, like last night. I start college in the fall, and I want to be as pain free as possible by then. I’ve been doing a ton of research on surgery since my NL told me that’s what the NS will push (he said not to trust anyone but him, and that pills, pills, pills are the answer even though they didn’t help at all and just came with bad side affects…) So I’m doing all the research I can and at this point, every time my skull starts pounding and every time I curse the sun for being so bright, every time I have to skip out on having fun because I can’t get out of bed with another migraine, I lean further towards the surgery… Has anyone had it truly work? I know the recovery is painful, and I’m TERRIFIED of even the thought of he surgery, but I want to brace myself in case it’s ahead of me in the future.