livingwithpots Posted March 28, 2013 Report Share Posted March 28, 2013 Hello, this is my first post here, although I've been visiting the site for over a year. It has been sooo helpful to read about other people's experiences, and to know that I'm not alone.Recently I've developed a scary new symptom. My swallow reflex is not functioning properly. Food drops into my esophagus before I've finished chewing it, I often get water up my nose when drinking or brushing my teeth, and I've started to choke on my own saliva. Twice I've had drinks "drop" into my trachea unexpectedly. Super scary!! I am constantly afraid that I'm going to aspirate something when I eat or drink. I am scheduled for a barium swallow study in a few weeks, and I'm curious if this could be POTs related. My second wierd symptom is bulging veins. I've read that blood pooling is a common symptom in POTs, but it seems people always describe it as their limbs turning purple. When I stand (or even have my hands below my heart) the veins in my extremities bulge like crazy. I can feel my heart beat pumping in my hands and feet if I stand for too long. My legs ache - so bad that I can't sleep at night. I'm actually lying in bed now with my legs elevated on pillows, trying to ease the discomfort! Do either of these symptoms sound familiar to anyone? And if so, what do you do to improve them? Thanks in advance. Quote Link to comment Share on other sites More sharing options...
angelloz Posted March 28, 2013 Report Share Posted March 28, 2013 Welcome...I absolutely have the bulging veins..just as you describe. My hands do turn red also when I get spells of blazing heat...but the veins bulge regardless. I have some swallowing issues, however I have had spastic dysphonia for many years, long before my autonomic problems. Let us know what you learn from your swallow study.Good luck! Quote Link to comment Share on other sites More sharing options...
Susanhs Posted March 28, 2013 Report Share Posted March 28, 2013 Hello livingwithpots! I too am a newbie here and have found everyone to be very helpful. I have the same issues with swallowing. I constantly choke on virtually nothing and I know how very scary it is. I've been home alone and it has happened a few times and thought I was gonna die. I don't go out much to eat mostly because I can't eat "real" food, but when we have went out, I usually choke on my water or just talking to my husband. It is really embarrassing. I have had a barium swallow which I had difficulty with the swallowing, but the doctor did not really look at that issue, he was looking into why I was vomiting up food several hours after eating. of course, the test only showed mild reflux. I also had an endoscopy. I told my gastro about the choking.and he dilated my esophagus hoping that would help the episodes. Unfortunately, a few days after I still was choking on my breath even.I do have bulging veins sometimes on my hands, but I have no idea what that is. I've never gotten around to asking about that. So many mysteries with Dysautonomia Please let us know what the results are. I hope you get some answers to your troubles. Quote Link to comment Share on other sites More sharing options...
badhbt Posted March 28, 2013 Report Share Posted March 28, 2013 Hi there Welcome and sorry you are having problems. The contraction of both smooth muscle and cardiac muscle is controlled by motor neurons of the autonomic nervous system. Swallowing is voluntary but the process once it gets to the esophagus is involuntary which is controlled by the Autonomic nervous system. I think it would make sense having swallowing problems. The esophagus contracts and relaxes, any disruption of this function can cause problems. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted March 28, 2013 Report Share Posted March 28, 2013 Welcome to the group livingwithpots & Susan The swallowing issue is very scary - sorry you are having to deal with that As badhbt mentioned, it is an autonomic function so seems to be a Pots/dysautonomia thing. Here is a link to an earlier thread where it was discussed. There may be something in there that's helpful. http://forums.dinet.org/index.php?/topic/19135-has-anyone-had-trouble-swallowing-dysphagia/ I have the same issues with swallowing. I constantly choke on virtually nothing and I know how very scary it is. I've been home alone and it has happened a few times and thought I was gonna die.Same for me! It's amazing what we can learn to live with when we have no control over it. Quote Link to comment Share on other sites More sharing options...
Susanhs Posted March 28, 2013 Report Share Posted March 28, 2013 Thanks so much badhbt and AllAboutPeace. It's so nice to have found this group and site. And to know that I'm not alone. Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 28, 2013 Report Share Posted March 28, 2013 FYI,Swallowing difficulties need to be evaluated by a physician. There can be other health issues present along with POTS. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 28, 2013 Report Share Posted March 28, 2013 In addition to the above, you may want to be evaluated for Chiari malformation which can cause swallowing and choking issues. I also get the bulging veins. Sometimes it looks like the veins on the back of my hands will pop. Quote Link to comment Share on other sites More sharing options...
khaarina Posted March 29, 2013 Report Share Posted March 29, 2013 I choke on drinks a lot. I think mine is due to GERD because it seems to have improved now that I'm on Prilosec. You can have acid reflux and not even realize it. All I had were hiccups and the choking for a long time before I realized what it was. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 29, 2013 Report Share Posted March 29, 2013 Welcome aboard, I hear you loud and clear.. I don't think I have bulging veins, but I don't see myself. I was just going to post about my swallow study I had yesterday and came across this. The pill was stuck in my throat and I did even know it. Kind of sad. : ( I wonder is it has to do with sfpn. I wish you the best of luck and you are going to LOVE it here. Everyone here is WONDERFUL!!! Quote Link to comment Share on other sites More sharing options...
livingwithpots Posted March 30, 2013 Author Report Share Posted March 30, 2013 Wow, thank you all for your responses. It is comforting to know there are other people dealing with similar problems. I have the barium swallow in a few weeks; I'll post the results when I hear how it went. Sigh. Some days/weeks are so discouraging! I had been doing fairly well symptom-wise (apart from the dysphagia), until the weather got a little warmer. In fact, I was actually entertaining the idea that maybe I was well enough to drive again - which would be so nice since I have two kids and a husband that works 80+hrs/wk. But then the temperature crept up to 78 degrees. That's not even hot, but it's enough to make all of my symptoms flare up. So discouraging, especially since I live in an area that gets up into the 100's during the summer. I just want to be normal again. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 30, 2013 Report Share Posted March 30, 2013 Have you looked into cooling vests? I just have a tie that I soak and it goes around my neck. I used to take my photography vest and stick ice packs in all the pockets to cool down with. : )Also, when you go for the barium swallow make sure they understand you have POTS. I arrived in my wheelchair, but I had to stand holding on to the x-ray table that soon turned into a tilt type table. Even though I told them, I know they didn't get it. I was soon tossed up and over way too fast. I wish I had said to everyone that they had to move me VERY SLOWLY! I felt like I had been on a carnival ride gone wrong. I never could do those rides anyway. : ( After I was so bloated and on a lot of pain. My system took many days to pass all the barium, even with all the extra fluids I took in.Once again, Good Luck ~ : ) Susan, a great big welcome to you too! I don't like the reason people have to find us, but I have made the nicest friends here. I hope you both do the same. This is a great place for knowledge and support! Quote Link to comment Share on other sites More sharing options...
livingwithpots Posted March 30, 2013 Author Report Share Posted March 30, 2013 BellaMia, thanks for the advice! I didn't know that you had to move for the barium swallow. I'm glad you told me! Quote Link to comment Share on other sites More sharing options...
Potsie0002 Posted May 1, 2013 Report Share Posted May 1, 2013 Ehlers Danlos Syndrome and other issues can cause swallowing issues as well. Have you been evaluated by a geneticist? Quote Link to comment Share on other sites More sharing options...
NaomiSpellman Posted May 7, 2013 Report Share Posted May 7, 2013 I would recommend eating slowly and carefully. Don't take big bites. Don't gulp food. Don't drink until food is all cleared. Avoid cold drinks. For pain in feet/legs: try compression hose (put them on before you get out of bed in the a.m. and leave them on as long as you can stand them). Put feet up intermittently whenever you're out and about. SHOES are important! I only wear Keen's because I get blisters/pain from other shoes. They make shoes for nurses and such, but all their shoes have good support and don't bind the feet when swollen. Maybe ice baths would help feet? Massage helps. Quote Link to comment Share on other sites More sharing options...
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