My diagnosis was only a few months back so I am wondering if what everyone refers to as dizzy is the room spinning? At times the inside of my head feels like things are just floating around and off kilter. The room does not spin but I feel very strange. It even at times wakes me up at night when I roll over. During the day it makes me feel “off” and lightheaded. Am I crazy or is this part of the splendors of this thing called Chiari?
The exercises I have listed under “Newbies Guide” on the home page - about dizziness and Chiari work great for what you are describing if primitive reflexes are what the issue is. Surgery and drugs do not tend to fix up the dizziness so might as well give them a try. Good luck in your efforts
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Thanks… I checked those and will try what I can. I also have some neck problems requiring surgery.
Please note that full neck range of motion movement is not necessary to achieve the effects of the exercises. Go slow with small movements with no jerking. Hope that they go well for you.
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I have had a similar feeling. Not dizzy but an odd feeling in my head. I think it is the CSF not flowing, building up, then moving. Sometimes I would HEAR and FEEL gurgling in my head, I would wake up and think it was coming from the bathroom and realized it was coming from my head. A sickening feeling of doom would come over my body. Sometimes it feels like I am burning up. I also get the whooshing in my ears, hearing my heart or blood flowing past my ears in my head, so loud and annoying. I was told that it was tinnitus. I do get dizzy, one time for 3 weeks, sat in my recliner most of the time, couldn’t drive, sick to my stomach, vomiting. The dizziness has been better since I am not working, doing less, not lifting, straining, or bending over. I wear a collar when I do housework, drive, or start to have pain in my neck, shoulders or base of skull. It really helps, sleep in it every night, no more numb tingling arms hands and fingers.
Thanks for your reply. I also get the burning up…hot flash…effect. I have a collar but don’t wear it much. Tried wearing it when I was walking the treadmill to reduce the neck pain and headache that usually followed but didn’t seem to help. Is your collar a soft one or the large stiff one (I have both)? Also, have you had any surgery?
Hi again, I was just diagnosed in Dec. Saw the neurosurgeon Jan 19. He told me to wear an Aspen Vista Collar (hard) for 2 weeks, sleep in it too. I wore a soft one at night. He wanted to see what symptoms my neck was causing vs Chiari. My base of skull, neck and shoulder pain is almost gone. My arms, hands and fingers falling asleep at night is 99% better. I’m not dropping things as much. I still get headaches, but not severe like I use too. At times I have speech and gagging issues, light headedness, tingling in fingers and nose, jerky eye movements. I get really hot a lot throughout the day, usually get head pain right after. Wake up a lot at night, I may have sleep apnea, snore. Get palpitations a few times a week. The MRI from Jan was laying down and it shows a 5mm herniation and a bulge in the spinal cord, congenital Cervical Spinal Stenosis with efficient deformity to the spinal cord, blocked CSF in both areas. I have bulging discs from c3 to T1. I did have whiplash twice from car accidents. The Neurosurgeon recommended surgery for both. Wants to replace 3 discs in my neck and cauterize the cerebellar tonsils so the shrink up into the skull. I am very scared of surgery. My mother has had 2 brain surgeries, for a tumor and an aneurysm. I am not ready for it. I can drive, do chores, take care of my grandkids. I don’t lift heavy items, strain, bend over too much, shovel snow, etc. I will miss riding on the motorcycle, but the Dr said it is not good for my neck. Staying healthy and pain free is my goal. At least I have an option of surgery if and when I need it, some do not.
I think we have a few things in common. I can no longer ride my Harley either. My neurosurgeon recommended two separate surgeries-one for brain and one for neck. I ,too, am trying to just cope as long as I can. I had a broken T-1 as a result of a 500 lb bed falling on my head last May and I keep hoping things will get better with time. It is to the point now; however, where I have some type of the headaches every day, neck pain, and lately the “brain fog”. Some days I don’t feel safe to drive. Your arms and hand issues sound like some my sister had that came solely from neck issues. I am learning that each case is different and each person deals in their own way. I want to be the way I “used to be” and that is not happening. I always ran and played and was silly with my grandkids and if I do that now I am light headed and end up with headaches. That is what I miss…
I referred to myself as a “bobble head”. That is what I felt like. It was more of an off balance feeing in my head. I had the decompression surgery 1 month ago, and so far have had none of those feelings. You are not crazy, Chiari produces a lot of crazy symptoms.
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I sympathize with everyone here some days my dizziness drives me bonkers along with the headaches. But I find that ice packs at the back of the near and neck area helps . Also, my doctor gave me gabapentin pills to help with the nerve pain. It’s not a narcotic so this might help. And Murphy lake I know what you mean by the hot flashes, some times I just want to jump in an ice filled lake to cool off! Wishing you the best!
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Hi Tazz, I have gotten the ice pick pain in my head too, it was many years ago, it would come and go, my primary dr said it was migraines. Sometimes my head would feel bruised, moving the hair would hurt. Many times the top of my head would hurt to the touch, that’s where I would feel the ice pick pain. Maybe it was blocked CSF? Hope you feel better soon, Tina from WI
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Does your vertebrae heal in its own? I would do the neck surgery before the skull/brain, since a lot of my sysmtons are related to my neck. Do the results out way the risks? Anesthesia, infection, spinal cord being exposed, more CSF issues, worse sysmptons, more surgery! And our age, recovery may be longer. I talked with another member that said don’t go to neurosurgeon, but to Chiari Specialist. Talk to you soon, my sister lives in Shelby, NC and I’ve been there about 6 times. Love Chimney Rock.
I have a naturally small spinal canal even without the effects of the Chiari. I am considering the neck surgery first as I have had the neck problems and epidural injections for neck pain for years. The neurosurgeon I go to is also a Chiari Specialist.
HI Shelbia, it sure does seem like we share many of the same symptoms. I was told my CSS was partly due to congenital narrow spinal cord too. My CSF is blocked from c3 to T1 and the cord compressed, of course. I have not had injections yet since I was just diagnosed in Dec, saw the Chiari Dr in January. Had my first therapy appt. Friday. I didn’t do much and no massage! Checked strength and measuring arm movements. I’m not suppose to go up and down or back and forth with my neck. Did the injections work for you? That will be the next step for me. Traction and Botox for head pain.
The injections did work for quite a while then got less effective. That was in past years when I was only having problems with my neck. The orthopedic surgeon I was seeing for my neck actually saw the Chiari and sent me to the Neurosurgeon.
You will have that at times. Be careful of your meds too. I could have a plethora of meds with my chiari and syringo if I wanted. Most medications only cause more problems with added side affects and weight gain (usually). It is a medications job to mask not remove.
Remember, in the battle we are fighting against our conditions, we receive no chevrons for our list of medications. Its how we feel, our energy levels, how we cope. The second we open our mouths our doctors reach for their script pads. I would encourage you to try more homeopathic approaches. That is, if you are on any medications. Hope this helps…and keep your chin up 
I take only Topamax and Excedrin. I have a script for Fioricet but take it only as a last resort. I take Magnesium and vitamin B, Tumeric; I am with you, the less prescriptions the better.