For the last couple of days i've been getting dizzy feeling when i tilt my head to the right and it kind of hurts. my ear starts to ring and i get to where i feel like i'm gonna pass out, I've been getting quick shooting pains in the side of head into my eye. My neck pops when i turn left and right and it kind of bothers me when i drive, I feel like i'm gonna get sick. I go to the Nl monday. My family does not really understand what i'm going threw, my mom kind of got mad cause i told her i rather have my pain where hers is, she has lower back problems pretty bad and i sad i rather have it there then in my head and she kind of got mad, My sister is not much help cause she is always not feeling well, she has depression, and knee problems and thyroid. any way i live with my cousin. which is in a wheelchair and has ms. so i'm here 24 hours a day with her, i have two boys 21 and 15 and they don't know what to do for her. so i'm trying to make my self feel better but its not easy, The only sister i have that helps out is in florida, and i wish she was here. guess i just need alittle bite of cheering up and hope the dr can do something monday. my mom want to go to the u p and of course i'm the only kid that will do all the driving with her and i don't want her giving me the gilt trip.
Thanks Abby, yes i wish my sister was up here to help me. Shes trying to come up.Its kind of hard for her,both her and my sister that is up here both lost a son. so shes got another son to take care of. any way yes i have had a mri of the cervical back in 2011 and i think the nl is gonna order another one to see if any changes. It says there is spondylosis and ddd most prominent at c5-c6. it bothers me to sit to long i have to get up and move around or lay down. The surgeon i seen said that the chiari was mild and the ddd was not causing the problems I've been checked for fibro and thoractic outlet and they say i don't have that, so what is it.
Abby said:
Bless your heart, it seems like you've got your hands full my friend. It is hard to be the caretaker and the patient at the same time. I wish you had more help at your home. Your a strong lady, and you just need some extra help there.
I would ask your doctor about doing a cervical MRI to rule out any problems, like degerative disc disease, or a reflexed or odontoid process.
odontoid process
Also known as the odontoid process, this is the peg which is part of C2, and sticks up from the base. The arch of C1 will rotate around the dens, and this permits the majority of head rotation. Cervical disc degeneration is a common cause of neck pain, most frequently felt as a stiff neck. Cervical degenerative disc disease is much less common than disc degeneration in the lumbar spine because the neck generally is subjected to far less torque and force. Nonetheless, a fall or a twisting injury to the disc space can spur degeneration, and accumulated wear and tear on the disc over time can also lead to neck pain caused by disc degeneration.
I have both, and it interfers with our daily activities like you described. Also, the blacking out may be related to POTS or dysautonomia, which you hear alot about on here. Some of us have several of these disorders.
I would certainly talk with your NL when you see them this week about what your describing. I had a cervical MRI and it did show the degeneration of the disc disease as well as the reflexed odontoid.
Let me ask you another question, do you have TMJ? Joint problems? Shoulder, knee, elbow, popping and cracking? You may also have hypermobility. Your doctors can send you for these tests and hopefully it can get through to your family what you deal with each day. We are here for you my friend and you do not need to put yourself on a guilt trip, your a wonderful person taking on way to much in your household. We will be thinking of you and please let us know what your NL says. This was want I was referring to when I we chatted before, I had concerns that you had some of these disorders along with your chiari. Message me, Ok, I am concerned about you.
Thanks Mandy, yes they are pretty sure she has ms, shes had it for about 10 years now, that runs in my family also, my mothers brother had it , he passed away. his daughter has it. Her mri have had no change in the years. My nl thought i may have it cause i have the white spots on the brain, but he sent me to a nl that only does ms and he was kind of rude. he said you don't have ms, your spots are from stress and alot of people have them, even i have them. he also said the chiari is not causing the problems it just in my head and to deal with my family dr and to stop seeing my nl. your family dr can take care of it. My family does have a lot of health problems, thanks its time to get ready for church.
Mandy said:
Hey Mitzi, I am so sorry, it sounds like health problems run in your family, which is such a sad thing :( It's even worse when those closest to you try to downplay the seriousness or painfulness of your situation. I'd rather have lower back pain than this any day of the week too.
On a side note, are the doctors 100% positive your cousin has MS? MS is easily misdiagnosed, and can be confused with Chiari. It's also frequently confused with a serious B12 deficiency. The problems you've talked about in your family: lower back, knees, thyroid, MS, they all have connections to hypermobility, and in some cases Chiari as well. My Mom has MS, my first research into Chiari was related to patients with MS and B12 deficiencies.
Here is a great video of a doctor from the UK, he gave his MS patients B12 shots, and almost all of them improved considerably:
http://www.youtube.com/watch?v=klobLSxv6i0
I haven't been able to convince my Mom to take B12 shots yet, but it might be some helpful information for your cousin.
Back to you though, stress is HORRIBLE for Chiari patients. I'm sure your mother loves you, and I know you love her, but the guilt trip or worrying about the guilt trip causes a lot of anxiety for me, and high anxiety always makes my symptoms worse. Making a long car trip is another way to create anxiety even before the trip, long car trips are hard for Chiari patients, hard on our heads, necks, stress levels, etc. Mentally, the best I've felt so far was by deciding my family wasn't going to make me feel bad anymore. I've explained to them what I have, how it affects me, and if they choose not to believe me, that is their problem. I won't feel guilty for not being able to do as much, or feel like I'm not doing everything my family thinks I should be doing, because basically I'm feeling guilty for having Chiari. And I have no control over being born with Chiari. If they can't be considerate enough to realize I would never choose to feel sick, be in intense pain at times, be exhausted with even the lightest physical work now, then I'm not going to worry about what they think of me. Because no matter how hard I've tried to do all the things I'm "supposed" to do, I can't get it all done anymore, and feeling guilty only makes it worse and more painful for me. I've questioned myself a million times, tried to suck it up, and I tell you, all I got was migraines and pain from it....it definitely didn't make them any happier with me.
Again, they love me, but they just think I need to be tougher, and not so lazy. If your family thinks the same thing, everyone here can tell you: you're not imagining it, it is hard to do normal everyday things, and overextending yourself causes pain and exhaustion.
Have you heard about The Spoon Theory? It's a great way to explain to your family what it's like for you. Here's a YouTube video from the author: http://www.youtube.com/watch?v=jn5IBsm49Rk. The author has Lupus, but I think it's a good analogy for Chiari patients as well.
Mitzi, you are a good person, who never chose to have Chiari happen to you. Even if your Mom or other family members don't realize how much of a burden that is, we do. I think it's wonderful you take care of your cousin, and that you try to help your Mom even though you have Chiari. I hope you get some help yourself, it sounds like you are taking care of everyone else, so who takes care of you?
Take care,
Mandy
I'm so sorry you are having such a hard time right now. It's really hard when no one understands your pain. I will say I have ankylosing spondylitis in the SI joint of my low back and I agree with you...the constant pain in my low back is much preferable to the head and neck pain I had pre-surgery! Funny how everyone wants to one up each other on who is in more pain or who is the sickest! I get this a lot from my family and from work. Funny story to cheer you up...there is a lady at work who is so, so sweet but really clueless with social interaction. She is always trying to find common ground with people. When she found out I was scheduled for surgery she told me that she was having some serious health issues herself, turns out she has a fatty liver and needs to go on a pretty strict diet. lol! It just cracked me up that she was comparing brain surgery to a low-fat diet but I know she meant well! :)
Good luck at your appointment today! I hope you get some ideas for relief! Keep us posted!
yes, this is a tough illness to get us to, i feel like their never gonna find out what is causing this. every time i get up for the last week i my ear starts ringing. my legs bother me and i limp once in a while most of my problems are acting up on the right side at the moment. thanks, i hope i get some relief too.
No it does not seem to be fair to have all these health problems, my family sure has had their share of problems, my mom almost died years ago of gane green in the colon, she was in a coma for about 3 weeks. My two sisters lost their sons, one was 15 and was in a car accident and the other one died a couple years ago at the age of 21, he was murder. I did have a miscarriage years ago. I'm starting to feel a little bit better, i went to the nl today. i have to have another mri to see if any changes. I'm kind of looking for a little vacation to get away and get a break. I sure can use it.