Chiari Online Support Group

Please help! Really struggling

I just posted yesterday, but I'm trying to get more posts out because no one has responded yet and I'm really struggling. Here's a little bit about me: Diagnosed with Chiari Malformation 1 Feb/March 2015 after an MRI for excruciating/crippling short burst headaches that happened rarely and creeped up to happening once at least every day in December 2014. 19 mm herniation. Symptoms: Crippling exertional headaches, fatigue, neck/head pain in general, numbness in hands and feet, sensitivity to sound, aphasia/stumbling over words and nystagmus. This past month my symptoms have increased significantly and quickly to where my head/neck are constantly in pain and the exertional headaches come within the pain I already have, making it even worse. I'm a sophomore in college and it's getting SO hard to go to class and go to work. I am able to keep up with my schoolwork, but the physical act of going to classes is so difficult for me (I'm constantly tired and in pain and can't bring myself to go, it's also really hard with the sound sensitivity to put myself in a situation where I can't get away from the sounds) and I don't know what to do. I also don't know what to do about my job because I'm starting to have trouble being on my feet for so long, but I really don't want to quit. Any advice or insight would be appreciated!!!

Hey! Since many Chiari patients get the right diagnosis only years after starting seeing doctors about their symptoms, there might be a while until you find someone.

I'm 25 and I live in Latvia. I'm not experiencing any excruciating pain, but my overall condition for a few months is keeping me from any work/studying.

I know how the ear sensitivity makes you feel. I have that too. I suggest using earplugs whenever the noise is too much. You could put them only half way in the ear when you're at lectures or work, when you need to hear.

Maybe there is someone in your college you can tell about this, so they can help in some way? There are Chiari awarenes sheets that you can print out somewhere on this site. You can give them to your friends, family, teachers, employer.

I'm sending you hugs, hope you find some answers and feel better soon!

Everyone’s body is different so our symptoms are different. I was diagnosed 5 months ago and went from minor to extreme in what I think is a short time.
I’m 46 and have FINALLY LEARNED to listen to my body. I suggest you do the same. Your body will win every time!
Maybe meet with your teachers, help them understand your medical condition, and see if they will work with you. Maybe next semester try online courses until you can few better?
I use a wheelchair when I’m out with my husband. I use a walker on good days. Maybe you can try a walker that has a seat for work. So when your body gets tired you can sit but still work?
Good luck and hugs and prayers from Houston!

Purplesparklewriter, there is a UK member Farrow who is a similar age to you and also in need of help Need as much help and advice as possible maybe you two could 'friend' each other here for friendship and support.

Purplesparklewriter, I too am having a lot of difficulty since the beginning of September with many of the same symptoms you described, I had a Posterior fossa decompressive surgery/craniotomy and laminectomy of cervical vertebrae of c1-c2 back in January of 2014, and my symptoms have returned. I had my mri's taken again and my neurosurgeon is waiting for the pre-authorization for the past 2 weeks from my insurance and primary care doctor before I can see him, and in the meantime I feel like I'm getting worse. I'm getting severe head aches and neck aches and I been trying to keep my neck straight as much as possible because when I turn to look left or right, the pain in my neck will get worse and make me feel dizzy.

I been taking Norco for the pain, which helps but only for a very short period of time and I also been taking ibuprofen, which feels like a placebo. I feel the worst when I'm up and moving around, just from walking around the house, but days when I leave the house and ride in the car to go to physical therapy and appointments, I feel like I'm at my worst.

So the past month been rough on me physically because its so hard to do anything besides reclining back on a reclining chair and laying in bed, its also depressing emotionally.. not being able to do anything constructive, even though having the desire to do so but cant physically, and some people just don't understand the concept, its soo frustrating!

Its also depressing that chiari malformation isn't more well known in the community besides online. like the nurses in the ER will be like, "what's that?" and keep having to describe it to people of what it is over and over, it gets very tiring.

I'm sorry you are having so many problems. Have you tried going through the disability act as far as your job goes? By law your job has to make accommodations for you. You may also be able to talk to your professor at school and see if there are any accommodations they can make for you. I hope you are able to get what help you need.