Where do I even start?

[CRAZYinCali2014]

T hey said I have Chronic Depression w/ Bipolar II, did I also mention that I have Chronic neck and back pain along with Arthritis in my neck and back plus degenerative disk diseases. so this was the diagnosis Ive had since 1996, Last week I was finally told that I have Arnold Chiari Malformation type 1.. They found that my brain tonsils were at 9mm on an MRI I had done in 2010. My Aunt is also a "Chiarian" and this is why I asked my doctor to check me for ACM for the last couple of years. I know she just thought I was crazy. I was in and out of her office all of the time with major Neck and back pain,and the migraines, ohhhhhh the migraines. I had my ears checked for the ringing and my eyes checked cause I felt my vision was decreasing, I see spots and got dizzy when I get up to fast. I was diagnosed with sleep apnea and have more pills that you can imagine for that and the depression. ( they would be depressed to if they knew how I truly felt everyday). Can you all feel me when I say how extremely tired I am, I sometimes had to pull the truck over to the side of the road because I felt my legs were to weak to even press on the gas pedal. I knew I wasn't crazy, I knew I wasn't a hypochondriac. My doctor at the VA asked me finally one day.... Okay so why do you think you have this, what symptoms of Chiari do you think you even have? my reply was "tell me what symptoms I dont have!" I was so angry after asking her to test me for the ACM for the past year. I had every symptom my aunt had. now a year later the same Dr. called to confirm my ACM diagnosis. I am a 36 year old mom with 2 kids now, and I am feeling worse by the day. I feel so guilty because I yell and fight with those closest for no reason. My body feels so broken and in pain, everything is a task right now and my husband isn't able to be home to help so I argue with him too. I havent been referred to neurology yet because the truth is no one in the Sacramento VA knows anything about this disease and they dropped the ball along time ago.I try to make it through the days without showing everyone how much pain Im really in. I don't want to talk to anyone or go anywhere, I seclude my self inside away from the bright sun in the dark as much as possible. but I hurt more when I try to rest, My body tense's up as soon as I lay down, Im so tired yet I toss and turn and cant ever sleep good even with the meds. The worse time is right before I go to sleep and as soon as I wake up, the dang pain.. Even the brightness on this laptop and my phone causes MIGRAINES.. I DONT KNOW WHERE TO START, I have a feeling that my medical coverage is going to make this a long process just to be seen.. what can I do to have a few good hours to feel okay? any tricks or suggestions? I am so sorry to let all of this negativity out on my very first post, but I don't want to bother anyone around me, they wont understand anyways. I just needed to vent. Thank you ;) just looking for a piece of happiness again.

[Elisaandbucky]

Welcome to our safe world of support and togetherness. Though we respond from our various geographical locations -  Kwalker0004 from Maryland, Selma from Pennsylvania, and myself from North Carolina, we are with you now to support you. There are so many of us you can draw strength from, not just those of us who have responded at this point. Remember what Kwalker0004 said in her post above. We are all here for support, and, with the addition of your voice, one more stronger. Peace new friend.

[CRAZYinCali2014]

Thank you both very much for your reply's, I am happy for any and suggestions and just knowing that you took the time to read and respond makes all the difference. It is great having a place to go to with questions where everyone cares

[kwalker0004]

Hello and welcome. Please know you are not alone and we are here to help one another through this journey. We share what we have learned and what we have expierenced throughout this long process.

Nothing really seems to help with headaches. Right now I can't even stand being in the complete darkness or quite as it seems to make them all that worse. Though its recommended to not tilt your head back, I do find this helpful. When all else fails I of course use frozen ice pack at the back of neck and head to help me out.

Pain does alter our moods. As I can certainly a test to this. I'mthe sweetest person, loving, caring, put others before myself. But after suffering from a headache for 7 days straight I know I'm a straight up hateful creature to be around. But I honestly try not to let it affect me because I hate being evil.

I really don't know much about the VA but do yourself a huge favor. Do some research familiarize yourself with terms related to the anatomy of your skull and brain. That way you will be able to know your doctor when you find him or her. I fought hard with my insurance to be able to go out of state to see my doctor. I'm thankful my insurance for allowing this. Though I have to pay for all services such as test that are not administrated in the state of Maryland. But we worked around that.

Whatever you do don't give up. I'm not a mother, but I do have my nieces and nephews for a few months out of each year. They are my world. I really don't have the benefit of being a mother full time and I know I try not to get to stressed when I do have them. As stress seems to make headaches worse. Find activities that allow you to relax. I find it a truly blessing to have a nice jacuzzi tub where I can relax at night to soft sounds as well as candle light. The nights I try to destressed as much as possible so I can sleep.

Good luck in your journey. Remember we are all here for support if you ever need to vent again. We won't get mad. As we all have done it before. And its not the herniation of the tonsils that should have you worried. It how thick they are and if they are causing CSF blockage. I hope you continue to share your journey with us.

[selmaS]

  Hi and welcome to the Chiari forum.

Know that you are not alone in being made to feel crazy or to be told it is most likely depression or anxiety...or migraines....

Most Drs are not well informed or experienced with Chiari so, the fact the VA Drs have yet to help you is not a surprise....

Many of us travel to get to a true Chiari specialist....

Being tired or fatigued is one of the big complaints ...sleep disturbances due to pain, sleep apnea or just not getting a refreshed feeling after sleep, and occasional insomnia.....

Chronic pain can change our moods....we can cry easily, or get angry , it is the pain and lack of sleep that can add to these issues.

Use the settings at the top of this forum to change the color of the screen as it can help to be blue and not white...tinted glasses can help as well.....

There are certain activities we should avoid and we need to listen to our bodies as to what activities will rob of us of energy and give us pain for days after...keeping a journal of what you do and then how you feel after may help you know what you are doing that is causing you more pain.

Last find a true Chiari specialist....we do have a list of Drs...that you can use to research Drs....we do not have a list of VA Drs....so, unless you can get them to approve  you to see one of the other specialists...I am not sure  what may be the best way, except maybe try to see if they will consult with one of them....