What symptoms do you guys typically get? Some of mine are so weird (to me) that it's hard to believe other people get the same symptoms. I was just very recently diagnosed, so this is all still kind of new to me.
The main symptoms I get (that I believe are Chiari related) are horrible headaches, sharp pain in my shoulder, neck, & ears, ringing in my ears, difficulty swallowing, pain in my leg and knee occasionally, TROUBLE FOCUSING!, and I get terribly dizzy any time I stand up. I'm also constantly thirsty. Does anyone else have any of these symptoms (besides the headache, because I know that is the most common thing!); or is it just me? What other symptoms do you guys have?
Symptoms for many of us are across the board. I will add what I did to help alleviate they symptoms in bold.I started with the stabbing pains in my forehead with heavy heavy strain that became more frequent and much more intense over about two years. (Don't strain. Sad, but nothing would alleviate this part.) I got horrible migraines 4-6 times a week in the evening (Imitrex/Sumatriptan helped. Without meds, cold compress on my neck while sitting in a hot tub or sleeping in cold dark room.) I then began instead of "added" symptoms, losing abilities. I lost a great deal of balance and coordination-similar to someone who is mildly drunk. I lost a great deal of tone in my hands and wrists. My hands became shaky and I lost a lot of fine motor skills. I then began losing my short term memory. When I walk without shock absorbing shoes, I get shooting tingles down my arms and legs. I became overly sensitive to loud noises in very low frequencies (hammers, bass music, etc.) and bright lights-one of the reasons I detest sunny days with snow on the ground. I began choking, mainly on fluids like water, coffee, saliva, etc. (I use a cup with straw consistently to allow all the muscles to kick in and start before I swallow. This is described by Dr. Trumble on a previous thread-will post when I find it.) I also HEAR my heart beat as well as other sensations (I can hear my hair brush going through my hair. Also, I hear rubbing my incision where the hair is regrowing-it is numb.)
All my symptoms began about 3 years ago. I had the decompression surgery 5 weeks ago. I've not had any more headaches. I may not regain the skills that I lost but my NS believes it will stop or at least greatly slow the progression.
9 times out of 10, we've thought for YEARS that "it's just me." BUT IT'S NOT!! There are others out there like us and they understand! That's what is so great about this place!
Yes, yes, yes! To all of your symptoms! I have trouble lifting things, bending over to pick things up that kind of thing- causes dizzy spells, vertigo, heartbeat/pulse in my ears. Back of head feels painful and full of pressure as do my ears. Thirsty, hot spells then cold spells. And of course, the headaches. Pain in hips too.
You are not alone! All of it may not be Chiari. I have other conditions that overlap and exacerbate my Chiari.
I have Fibro, TMJ, IBS, MIGRAINES, Mild Osteoarthritis, and hip bursitis.
I have most of that myself. Does anyone else get seemingly random changes in senses? I call them shifts, sometimes subtle changes in hearing and vision and sometimes big changes normally they only last for short periods.
Hi Tamara, I too am dizzy all the time. My neck, eye and ear have pain and pressure but only on the right side. My right knee sometimes gives out on me as well. I’m seeing my surgeon this Thursday. It can all be so overwhelming! You’re not alone
