UnderwaterThing Posted July 12, 2013 Report Share Posted July 12, 2013 I am just curious if anyone else has experienced the strange new symptom I am having. I was diagnosed with POTS a year ago. My heart rate jumped almost 80 beats during the TTT. I am now being treated at Stanford. I might even be doing a second TTT in the next few months there...which I don't know if anyone has ever done two or why we would agree to do that torture twice.My symptoms worsened significantly over the last few months as I was working too much and couldn't manage my symptoms at the same time. I now have this issue when I am walking where I feel like I am walking in quicksand or walking on a trampoline. I also feel this heaviness in my chest occasionally as well. I started taking Florinef along with the Verapamil I have been on for a year (which has been wonderful) and those issues improved a little bit but not completely. I am wondering if anyone else experiences those issues with walking or the random heaviness in the chest. A few doctors have suggested that it may be nerve damage. Quote Link to comment Share on other sites More sharing options...
Agreeky Posted July 12, 2013 Report Share Posted July 12, 2013 UnderWater I have posted about this before and so have some others. When I walk feels like whole ground shakes. Also I body sway even when sitting. Have mo explaination for it though! Mine comes and goes. Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted July 12, 2013 Author Report Share Posted July 12, 2013 Thanks Agreeky! I was searching for threads but couldn't find any that discussed the specific symptoms I'm having where I feel the ground sinking when I walk. I definitely have the swaying when I am still too. I told my cardio a few weeks ago that if we had an earthquake (I live in California), I probably wouldn't feel it because I always feel like I'm swaying or rocking. Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 13, 2013 Report Share Posted July 13, 2013 Besides the ground feeling like it is dropping out from underneath me I also have episodes when it feels like I'm trying to pull each leg out of quicksand as I walk. I know I'm walking weirdly then because I start lifting my legs from the knees -- straight up. I'm sure it must look like some kind of weird marching. I also get the swaying stuff when I've stood too long and it can happen when I've been sitting with my feet down, too. I always ask my doc about any new symptom. Just to make sure I'm not attributing something to POTS that could be something else. But I'm 57 now and it's wise I do this. blue Quote Link to comment Share on other sites More sharing options...
Joann Posted July 13, 2013 Report Share Posted July 13, 2013 this may be a little different, but I would feel like my legs had magnets in them and were being drawn down to the ground. They were so heavy to lift. Sometimes my spine would feel like this too. Quote Link to comment Share on other sites More sharing options...
Agreeky Posted July 13, 2013 Report Share Posted July 13, 2013 Does anybody have theories on why this happens?? Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted July 14, 2013 Report Share Posted July 14, 2013 I experience a great deal of heaviness in my legs when trying to walk. It feels as if I have exercise weights strapped on. I have tripped and fallen because of not lifting my feet high enough. I also have balance problems and weave as if intoxicated. I'm sure I look a bit odd when walking. I live in California as well and unless we experience a significant earthquake I am not aware of the smaller ones that others are aware of. Which is maybe a good thing. I also experience the intermittent feeling of heaviness over the chest as well as other respiratory discomforts, air hunger etc. Some literature suggests thoracic hypoperfusion as a possible reason for the respiratory symptoms and blood pooling in the lower extremities and general fatigue might be a few of the reasons for the leg heaviness ( stuck in quicksand feeling ) and some of the other walking problems. Certainly nerve damage is another possibility. Janet Quote Link to comment Share on other sites More sharing options...
Freaked Posted July 14, 2013 Report Share Posted July 14, 2013 I get this terribly when my BP drops. Feels like I'm walking through jelly and lifting my feet out of quicksand. Sometimes it's so bad I just have to stop for a while, and it tends to go with blurring vision/presyncope. Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted November 8, 2013 Author Report Share Posted November 8, 2013 Bumping this thread back up. The walking issues seem to have worsened, so today I am giving up on denial and going to buy a walking cane. I never imagined being 33 and needing a walking cane, but this is where my condition is right now and I know it will help me. Still wondering if any others are experiecing this because my doctors don't seem to have answers. I don't think my neurologist's nurse practitioner at Stanford believed me when I mentioned this issue. The battle continues. Quote Link to comment Share on other sites More sharing options...
Becia Posted November 8, 2013 Report Share Posted November 8, 2013 I'm in a wheelchair because the moment I standup, my entire body tries to shut down, and I pass out extremely easily. Sitting up currently is a feat of strength for me. I don't feel heaviness or anything, I'm just very unsteady, and then the world is constantly spinning, then boom, ground. I try to do some yoga to keep my strength up, and such, but I miss the days I could ride a bike. I actually saw my bike for the first time in two months yesterday, and just about cried. I miss it. I hate what pots and dysautonmia has done to me. Quote Link to comment Share on other sites More sharing options...
looneymom Posted November 9, 2013 Report Share Posted November 9, 2013 This walking/standing issue needs to be researched more. I feel like it must have something to do with something interfering/blocking the signals getting to the brain. Maybe something that is attacking the nerve cells in the brain. As a parent, I'm frustrated and want answers now! I feel for anyone that is having to deal with this symptom of top of low blood pressure and passing out.UnderwaterThing,Have you ever had someone video this while it is happening to you? I had to do that with my son, so the doctors could actually see what was happening. It was not hard to describe what was happening, but the doctors had a hard time believing it was happening. A video can be priceless and worth a thousand words.Rachel Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted November 9, 2013 Report Share Posted November 9, 2013 Hi Underwater Thing,I'm so sorry to hear that your walking symptoms have worsened. Mine are slightly worse then in my previous post. I don't have any answers yet but hope to after my return visit to Mayo. I have a growing list of questions. I will share if I find out anything. Janet Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted November 10, 2013 Author Report Share Posted November 10, 2013 Looneymom: That's a good suggestion but it isn't necessarily an episodic issue. It just seems worse on my bad days. The best explanation I have is that it feels like I'm walking on sand. If the lights are out in my apartment when I walk I have a hard time telling where the ground is. It just feels like the ground is moving. One doctor suggested that it sounds like nerve damage, which makes perfect sense with dysautonomia/POTS. This just started in April. It's great to hear everyone's experiences and coping strategies. It's been really frustrating dealing with this new challenge Quote Link to comment Share on other sites More sharing options...
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