Sorry for all of the questions recently. I am trying harder to connect all of the dots and piece everything together. I have noticed lately in addition to my balance feeling off in general and when I walk, when I am standing still I start to have a sensation that I am falling backwards. It is almost like my center of gravity and balance is shifting backwards. Has anyone else experienced this? I've noticed it as well if I am hugging someone I start to fall back a bit and it is very bad if i close my eyes.
Yup, Yup and Yup....lol....in fact I still have moments like that....post op.
Uneven ground is really bad, as is a store with florescent lights, and one with a checker board floor, black and white or a dark and light color combo is really tough....
I also found walking in a dark room...I feel like I am falling into a hole...it is strange, and last. in the dark standing waiting for a car to back up, do not try to walk toward it...OMG what a strange sensation....
I had the same issues before my surgery. A lot of my symptoms were visual and related to motion and balance problems. I used to say that I had the jerking feeling that you get when you come to the end of a roller coaster ride, but I was just sitting still. I also had the visual issues that Selma describes with what I was looking at causing me to be dizzy & nauseous. Every trip to the grocery store made me ill because walking past of the rows of stuff on shelves made me dizzy & sick. Closing my eyes also made me feel unbalanced.
I saw a really good neurologist about the visual/vestibular issues and she figured out that I had developed nystagmus, which was contributing to the pervasive motion sickness that I experienced. All of those issues stopped when I had the surgery, but I don't know if it was the surgery that fixed it or that I also quit taking Topamax at the same time, which can have nystagmus as a side effect.
I hope you get relief from your symptoms soon, I know how debilitating those kind of symptoms can get to be.
Thank you both VERY much and Selma I REALLY REALLY appreciate all of your help. You have kept me calm in a time that I feel like I am crazy or losing it. As soon as I think I have a pattern or an issue figured out it takes a crazy turn and it is comforting to know that at least I am not offbase in what I am feeling or thinking. Thank you again and to everyone here in the community.
I am right there with you on this one!! My primary symptom is balance problems, ear problems and headaches. I use a straight cane because my balance is so bad. I have found that my head goes backward like you described and it is bad enough that I am grateful to have my cane. I have not had surgery and am still trying to find some sort of help. Best of luck on this journey!!
I've experienced the sensation before also with intense headaches,Neck pain,Back pain, numbness,pain on my forhead and eyes, light headed. My problems with balence wasnt a primary but I know how ya feel. For you and McMel87, Keep Holding On. I know that the malformation drives nuts but you have to keep fighting. I know how the insanity is even though the maxium pain lasted only 8 months, they were still difficult.
I dont know how your pain started so i cant give advise. Mine started with domestic violence from my step dad last agaust and the pain practicly took all of my sophmore year of school.I tried medication,relaxation,and physical therapy....Nothing worked. But then i had the surgery and i feel great.Now my life is less heavier than before, feel like a new person. the only thing left is our family's fight for our stepdad. I dont care, he is going down..
Anyway back to you and McMel87,I hope that you can find a solution before you go to surgery.....i know its hard but DON"T give up the fight! =)
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