Scout Posted January 3, 2020 Report Share Posted January 3, 2020 Hi folks. I hope everyone had a nice Christmas and New Year! The holidays are so hard for us potsies, but I hope you're recovering well and were able to at least have some fun. Also, I just have a question regarding balance: Do many of you have issues with walking straight and keeping yourself upright easily? I've had this happen for a few years, but it's gotten so much worse, where I'll get up and go to walk, and simply fall over, or, my muscles just won't work and I'll lean dramatically to one side and try and balance myself out, if that makes sense? It honestly feels like, a lot of the time, my body doesn't know which was is up and my muscle memory doesn't work right. That's how it feels, at least. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 3, 2020 Report Share Posted January 3, 2020 This is not uncommon with dysautonomia. Here is a recent discussion that may be useful. https://www.dinet.org/forums/topic/30856-swaying-back-and-forth Just as a side thought, and maybe you have already had this evaluated, but low B12 can cause neurological symptoms. I was diagnosed w low B12 a couple of years ago and had multiple symptoms including loss of balance that finally improved after taking a supplement and getting shots over several months ( I still take a supplement). Quote Link to comment Share on other sites More sharing options...
yogini Posted January 3, 2020 Report Share Posted January 3, 2020 4 hours ago, Scout said: Hi folks. I hope everyone had a nice Christmas and New Year! The holidays are so hard for us potsies, but I hope you're recovering well and were able to at least have some fun. Also, I just have a question regarding balance: Do many of you have issues with walking straight and keeping yourself upright easily? I've had this happen for a few years, but it's gotten so much worse, where I'll get up and go to walk, and simply fall over, or, my muscles just won't work and I'll lean dramatically to one side and try and balance myself out, if that makes sense? It honestly feels like, a lot of the time, my body doesn't know which was is up and my muscle memory doesn't work right. That's how it feels, at least. Ive had severe swaying back and forth as my worst symptom. I remember how very hard that was and I really feel for you. I felt like the ground was moving up and down underneath me, but I could still walk slowly and straight. I never fell over (or felt like I would fall) or leaned to one side. To be safe it might make sense to get tested some other conditions that affect balance, like inner ear conditions. Some on this forum have the misfortune of having both inner ear and dysautonomia - maybe there is a treatment outside of dysautonomia which would help you. Quote Link to comment Share on other sites More sharing options...
Always_anastasia Posted January 3, 2020 Report Share Posted January 3, 2020 I've had this happen to me! If I stood up, I'd fall right back over .. luckily I was always near my bed when this happens. Also I can't walk in a straight line,with one foot in front of the other..I look like a baby learning to walk, no balance at all. I also tend to lean backwards , almost as if I'm being pushed. It's quite scary! Quote Link to comment Share on other sites More sharing options...
Sushi Posted January 3, 2020 Report Share Posted January 3, 2020 6 hours ago, Scout said: Do many of you have issues with walking straight and keeping yourself upright easily? Yep, and it can lead to falls. Aside from the known balance disturbances of dysautonomia, I've discovered that strengthening my leg muscles is making a difference. There is an active thread on this: Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted January 3, 2020 Report Share Posted January 3, 2020 Yes. I would totally fail a DUI test. Always wondered what would happen if I was asked to do one. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 3, 2020 Report Share Posted January 3, 2020 @Scout yep, I have it too. When POTS is at its worst for me I can get up from lying or sitting, take a few steps and completely sway to one side. I mean I will actually fall into a wall (usually the left side) and I have absolutely no control over it. I believe - at least in my case - it is caused by the abnormal and delayed response to sudden change in position, from sitting to upright. Quote Link to comment Share on other sites More sharing options...
Scout Posted January 6, 2020 Author Report Share Posted January 6, 2020 Thank you so much for the replies. A lot of you sound like you're experiencing exactly what I do with the balance issues. @Pistol I often fall right into the wall, too! It always feels so bizarre. I usually just tip right over on my side or sway. Definitely an odd feeling. I will definitely keep prioritising lower leg exercises. Hope everyone is well, and thanks again! Quote Link to comment Share on other sites More sharing options...
p8d Posted January 7, 2020 Report Share Posted January 7, 2020 I still wall walk sometimes but I found leg exercises and especially balance exercises to reorient the propriorecptors (spelling?) in my ankles helps. My PT gave me the exercises. Quote Link to comment Share on other sites More sharing options...
Scout Posted January 12, 2020 Author Report Share Posted January 12, 2020 On 1/8/2020 at 2:29 AM, p8d said: I still wall walk sometimes but I found leg exercises and especially balance exercises to reorient the propriorecptors (spelling?) in my ankles helps. My PT gave me the exercises. I'll definitely be diligent with doing my daily leg exercises. I do the wall walk sometimes, too. Sorry to hear you're also struggling with balance issues! Hopefully we improve over time. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.