Over the past 3 years I have been getting episodes where it feels I have lost coordination of my whole body. It first started when I was out walking the dog in the woods, then I felt strange and realised that I could not judge where overhanging branches were, or quite where the ground was and felt very unsteady. When I got home, I tried to make myself a drink and found that when I reached out to get something I overshot to pick it up. Other things are not being able to get something in my pocket with one hand as I usually do and end up having to open the pocket with one hand whilst putting in the item with the other.
My vision goes askew during these ‘episodes’ also. I have found it hard to take in what others are saying - I can hear the words but they make no sense. My peripheral vision seems skewed also. It almost feels as though my eyes are moving all over the place.
I seem to get a warning of severe head pressure before I start to feel bad which is similar to my chiari pressure but I also get a feeling of being unwell before the symptoms start.
In between episodes things are absolutely normal. Just to add, I do find it hard to have a shower as my eyes are closed, or in the dark I struggle to feel steady. My eyes jump up and down when they are closed.
Does anyone else get this…sensory ataxia is the only thing I have found that resembles this.
This sounds neurological. After my TBI I started having horrible proprioception problems. Have you discussed these issues with your neurologist?
To this day I can’t close my eyes in the shower with out touching the wall, or I fall over!
Hi puggles. It definitely feels neurological. Am seeing a neurosurgeon in August. What is TBI?
tBI is a traumatic brain ijury. It can be only slight injuries, like concussions. However any hit to the head is cummilitive, the smaller injuries do add up. It doesn’t necessarily be a huge injury, all small ones add up to permanent injury. Mine was unfortunately 2 larger ones that caused problems (no pity because its not really that bad, just the proprioception problems) but that added to the Chiari damage really messes with things in the ol’ noggin! Lol! (Gotta’ find some humor with all this! :-). I did have migraine with aura that progressed to harmonic hemiplegic migraines. Besides the pain I just talk and look a little funny because of the stroke like symptoms that I get. And with my Ehlers Danlos syndrome I can’t take narcotics of any kind! Have to use all my grandmas tricks to stop them. I can’t even take abortives, Triptans DHE or ergotamines.
I get a lot of these especially walking the dog I think it’s coz I’m looking down more at the floor and ALS walking on concrete dies the same I think it’s the pounding on the brain with no fluid to cushion it. I was decompressed 4 days ago so will be interesting to see if it goes. I never feel normal between episodes .
Does anyone fell weak and shaky all the time?
Wow I had this happen a couple of times over the past year, it felt like i loss complete control of my lower half of my body, i could walk but it didn’t feel like my legs were my own or that i had control over them, i also remember feeling lousy when it happened and have balance issue when i close my eyes in shower to wash hair. My daughter has chiari , after this happened I went and asked for an MRI to see if I had it as I have a lot of chiari symptoms , numbness in legs and hands , extreme vertigo at times, forget words, studour, ringing in ears, sensitivity to noise, i ache all the time, extreme pressure in back of head with headaches and pain in neck to middle of my back accompany this, was up walking outside with my husband at 3:30 am this morning to try and relieve it. Have loss the strength in my arms and legs anyway my dr. Told me I was too old ( I’m 43) to just get chiari and thought I had MS did MRI said no MS or Chiari , but thought there was an issue with my pituitary gland after 2 more MRIs also ruled that out and said I was fine. So not sure if I have a radiologist who can’t read a scan as same hospital that diagnosed my daughter with chiari also told us a year later with follow up MRI that she no longer has chiari , (she must be the first one cured of chiari lol,) or they have missed it or I just have all the same symptom but can relate to what happened to you .
Definitely weak and shaky. I can’t get any definitive answers, one specialist says its because of my POTS, next one says its because of low blood sugar, next one because of I’m under weight (gain weight that will fix everything! Lol! If it were only that easy!), low blood pressure issues, migraines, TBI and the list goes on. My PCP and I are trying to work on this now, hydration and high calorie diet seems to be helping, I can’t drink enough to help so I have to have I’ve therapy 3x a week (my EDS makes normal IV’s impossible so we have a central line for a short time.).
My surgery was long ago–in 1985 and my sense of where I am in space has not been normal since. Have to be very careful walking outdoors on uneven ground and MUST use a shower seat as closing my eyes always makes me fall over! You will probably always have to be careful as a neurological exam just a few months ago proved that I still have ataxia under many conditions, particularly when my eyes are closed. Your new " normal" will never be normal like people without Chiari. The eyes jumping is a form of nystagmus or involuntary eye movements which also can be a long-lasting Chiari side effect. Good luck.
Yes I do or something like it. Dizzy, poor motor function, pressure in the top back of my neck and head, brain fog. I had Chiari decompression surgery in 2004 @ the University of Miami. These symptoms have been slowly coming on and are now more than I can handle. My local neurologist just blows it iff. Getting tired of it.