Yes, I do. I feel like a total clutz. I almost feel "spacy". I just find out last week that I had CM so I am still trying to figure this out as well.

It is a horrible feeling because I also feel like super out there and tired

It is a terrible feeling. I am hoping to find out more, my neurologist doesnt seem to be concerned about that as a symptom and is only more concerned on if I am having headache's or not. She doesn't even think it's important to even really pursue talking about Chiari until I start getting headaches...I just know I find this symptom hard to function with.

Tell me about it. I am at work and i am constantly sitting down and getting up. So what i end up doing, is just standing through out the day because there is no way I can keep doing this. It is a scary feeling especially sisnce I suffer from panic disorder and anxiety as well because it causes my panic attacks to hit.

I DO TOO! My head feels full like it has a cushion inside it around the brain - over stuffed - does that make sense? I am also having more and more headaches, not the ones that eminate from the back of the head, but that go around the head from top to bottom. I also get dizzy or have vertigo if I sit a certain way. Feel like I'm gonna faint. Drs think that is blood pressure doing a major drop then readjusting. Had a pretty bad head blow on Dec 30th (dumb one and totally my fault!, but a blow just the same :)) Haven't went into Neurosurgeon even tho it was advised because, well, I am just stubborn, and don't like drs too much. Besides, the symptoms don't stop me from doing what I love - my job - so i am hesitent. Plus I really don't want (more) bad news!
Lisa

I totally agree Lisa, i so don't want anymore bad news. I have this, I have prolactinoma which is a tumor in my pituitary gland, i have panic disorder, anxiety, depression. I stay away but I hate this feeling. It is a bad feeling.

I am covered in bruises because I am always so unbalanced. I often fall and when I do its almost like I black out and forget what I hit. I am using a cane now because when I fall it shakes things up and I am often bed ridden for a few days. Using the cane gives me a bit more confidence to go out and not be afraid that I am going to fall and embarrass myself.

I get lightheaded from time to time. I also get low blood pressure, which is odd because my bp has always been 110/80 and often it is 90/60 and the lowest it's been is 63/38.
Isteele48 your headaches sound like typical intercranial hypertension headaches. Where you have too much fluid around your brain and is pushing on your brain. I have these headaches and they were moderate to severe 24/7. I don't want to see you get that way, it got much worse over time. If you notice it gets worse please consider going to a NS. The only way to actually help these kinds of headaches is to have the fluid rerouted.
I have been clumsy all my life so I have no excuse lol :)
I am sorry this condition has left you so miserable. Hang in there!
Mal

Hey ladies, I realize your post is a bit aged, but, what your experiencing is central vertigo from pressure flucuations. Sucks dont it, I have felt as if ive been on a boat going on two months now. I advise eveyone of us to get a BP monitor to carry with you, start keeping track, I also have POTS. My BP goes too low when I stand up, no fun. When you get symptomatic after rising take your bp quickly, I bet yours is dropping, and your heart is racing.
Anywho, im going to vestibular therapy very soon, waiting to get approved by insurance. Talk to your doctors about central vertigo, and many of you may also not realise that spacey feeling your having especially if vision issues accompany it, your most likely having hihg pressure, like high intracranial pressure which can cause papilledema, I also had this. Makes you optic nerve/disc swell and can cause blindness. Make sure you are getting vision check up with an opthamologist, not an optometrist
as they are not very versed in this and tend to panic.

I had all of these before my decompression surgery. I always thought I was just a clutz until my diagnosis for type 1

The "sitting a certain way" symptoms are typical (awful but hope that is a comfort) Be mindful not to cock your head too much side to side up or down any length of time, keep you head level and get up and move.

Not easy to do during class so my daughter would lay her head on desk to stretch things out and establish better flow. That should go over well at a conference table!

My symptoms, headaches and spaciness are increasing abit and so is the "buzzing" in my arms and legs, especially when I wake up. I have been advised (again) to go see Neuro for a consult-chek in. Have an appointment August 8th.
Wish me luck! I am expecting a more possitive visit as my other dr will be consulting with neuro as well and I actually like both these drs - a rarity for me as I don't like/trust most. (Being told your black-outs and falls are just "for attention" will do that to you!)
Lisa

I also have all this. Been dizzy for over 2 mos. now & I too have to walk w/a cane. This is getting worse. I have been to so many doctors, I'm co-pay poor. I'm so afraid I'm going to have to have a second CM1 surgery, but this time I'm going to a Chiari clinic, if they that my insurance. I admit I'm very scared, but I can't keep going on this way. I'm having trouble finding a NS that'll help me. I just don't understand, it's like they are afraid of me & they lie to me all the time. I bring proof, but they won't even look at it. I just want some help. I hope everyone has a better day than I am. I'm afraid I'll go to sleep one nite & not wake the next morning. Vickie

So sorry twin, its not because they don't believe, its because you've already had surgery. They don't like cleaning up someone else's mess and second decompression/corrective surgery is technically difficult so few are up to the job.

Not you, its them and God forbid they be honest.