Loulou Posted August 4, 2015 Report Share Posted August 4, 2015 Hey. Hope your all having better potsie days. Over the last couple weeks I have been having the worst episodes where I flush, become hot and get the worst clamminess ever, then within minutes I am cold. Normally I just get clammy on my hands and feet when I'm having very bad days, but it has changed. It is happening often throughout the day and I even wake up 5 or 6 times throughout the night. I am not sure why it is happening so much. I have my thermostat set on 69, and have very light bedding. There must be triggers that I can't see..... Do you deal with this issue? If so, what's going on and what help's???? Quote Link to comment Share on other sites More sharing options...
angelloz Posted August 4, 2015 Report Share Posted August 4, 2015 This was one of my early symptoms and I still get this. At times more often than others. I too get the night time spells, often after turning over, waking up , positional change. I don't get as blazing hot as in the beginning but it still happens. I too can get cool after a bit..maybe from the clamminess?? I think small dose aspirin helped me ( mast cell issue ) ?? But I have stopped due to easy bruising. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted August 4, 2015 Report Share Posted August 4, 2015 I have exact same problem, happens both day and night. In the day it usually when I am moving around, I find stopping and sitting quietly until it passes makes it pass quicker! I drive my hubby mad at night covers off and on haven't found anything that helps. I find I am worse when I am really tired.If the weather is hot and humid (doesn't happen that often in UK!) I find running my wrists under cool water helps too Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 4, 2015 Report Share Posted August 4, 2015 I have had that for probably the last 6 years. I finally have found something that contributes to it. When I eat nuts, seeds, chocolate, I notice it is way, way worse for a few days. I have given them up. It has lessened my flushes by about 75%. I'm not sure if it is the magnesium or copper in them that are affecting me.And, I think clamminess in the hands/feet are related to adrenaline. Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 4, 2015 Author Report Share Posted August 4, 2015 angellozThank you. I already bruise easily. This is harsh.... I will have to wait on the aspirin because of the brusiing too. I tested negative to mass cell, although i do have more of those symptoms. Could the test just not find it I wonder? Thank you for the post.loulou Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 4, 2015 Author Report Share Posted August 4, 2015 Dancer65I do the same thing with the covers, hahaha.... My hubby has to get up early everyday, so I know I am keeping him up with this...UGGG... Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 4, 2015 Author Report Share Posted August 4, 2015 I have had that for probably the last 6 years. I finally have found something that contributes to it. When I eat nuts, seeds, chocolate, I notice it is way, way worse for a few days. I have given them up. It has lessened my flushes by about 75%. I'm not sure if it is the magnesium or copper in them that are affecting me.And, I think clamminess in the hands/feet are related to adrenaline.Sue1234,I have been eating walnuts and dark chocolate covered prunes.... Thank you, I will stop them right now....Thank you so much, I hope stopping these things will help me too. It makes sense, I started eating the nuts and chocolate covered prunes about three weeks ago, so you have to be right about this. I take magnesium daily since I was diagnosed with POTS and so maybe it is the copper for you. I never thought I had any triggers, wow, I just never put these things together. Thank you so much for posting. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 5, 2015 Report Share Posted August 5, 2015 Wow, LouLou, it will be interesting to see if giving them up helps you! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 5, 2015 Report Share Posted August 5, 2015 This happens to me too. Same thing with the covers, on and off all night, blazing hot then freezing cold. I've noticed on the days I have exercised I suffer more from the coldness, especially at bedtime. I do believe it has to do with the release of adrenaline during exercise. I sweat profusely when I work out or ride and even after a warm shower I end up freezing cold. My husband is still shocked at how cold I become. I'd be interested in finding out what can help with this.Interesting that someone said magnesium can cause a problem. I have severe colonic inertia so I take a magnesium supplement twice daily... Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 5, 2015 Author Report Share Posted August 5, 2015 Sue1234I will let you know in a few days. I stopped eating the walnuts and chocolate, so far just the 1 day. I guess it might take a few days to get it out of my system, but I will keep you guys posted if this work. I so thought I had no food triggers since I have no allergies, but this means that I still have a lot to learn about POTS huh? Thank you all for sharing....loulou Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 5, 2015 Report Share Posted August 5, 2015 I just know a few years ago, I was reading somewhere where women were discussing how they felt when having to take magnesium sulfate(IV, in the hospital) to stop early contractions. They repeatedly mentioned how hot and flushed they were. This made me think of how I had been taking magnesium for a couple of years for bowel issues. I would try various kinds. I then started noticing the connection to nuts, and quit them. But, then a craving would come on, and I'd once again eat something with nuts/seeds, and sure enough, for a couple of days I'd be hot and having episodes of flushing.So, I'm not positive that is the correlation, but just suspecting it. Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 5, 2015 Author Report Share Posted August 5, 2015 Kris4444,I have been taking the magnesium since diagnosed with pots, I think Sue1234 may be right about the copper in nuts seeds and chocolate. Because this all started for me about three weeks ago, the same time I started trying to eat small amounts more often throughout the day, trying to see if this would help me feel better, since so many say these small meals help them. So I bought walnut, thinking protein, and chocolate covered prunes, thinking "help with going", and then literally that night I began with the clamminess.....I wonder if there is a way(test) to find out if it really is the copper? that would be interesting. Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 5, 2015 Author Report Share Posted August 5, 2015 I just know a few years ago, I was reading somewhere where women were discussing how they felt when having to take magnesium sulfate(IV, in the hospital) to stop early contractions. They repeatedly mentioned how hot and flushed they were. This made me think of how I had been taking magnesium for a couple of years for bowel issues. I would try various kinds. I then started noticing the connection to nuts, and quit them. But, then a craving would come on, and I'd once again eat something with nuts/seeds, and sure enough, for a couple of days I'd be hot and having episodes of flushing.So, I'm not positive that is the correlation, but just suspecting it.wow, its crazy. I also just read about copper and how it can affect the nervous system. It seems both of them can be affecting us. It keep us in fight or flight. Quote Link to comment Share on other sites More sharing options...
Heartandsoul Posted August 5, 2015 Report Share Posted August 5, 2015 Very interesting discussion. What jumps out for me is the mention of copper. I started taking copper and zinc 3 weeks ago and I have in the last 3 weeks become more intolerant to heat. I have felt worse overall. I didon't know why I've become so "clammed out" , drained, and more. I will be interested LouLou how you make out once these food items are out of your system. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 5, 2015 Report Share Posted August 5, 2015 To be honest, I have actually had my copper tested a couple of times in the past 5 years, wondering if I had Wilson's disease. It's a long, weird story why! Anyway, I had my serum copper and ceruloplasmin tested, and both were normal, so no Wilson's disease. BUT, my free copper has been high a couple of times. I bought these tests on my own, so don't know the significance of it, as I don't have a doctor that I would feel comfortable asking about free copper(in other words, a knowledgeable holistic physician). I've often wondered about copper in general, because a lot of POTS people have EDS, which is a problem with the cross-linking of collagen. Guess what is strongly involved in collagen formation? Copper. Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 6, 2015 Author Report Share Posted August 6, 2015 Hi everyone,Just an update since stopping the nuts and chocolate. Last night was better, not as many episodes. So will continue to avoid nuts seeds and chocolate. I will give another update in a few more days. Also,I read up on Copper and how too much can affect us. It can cause us to stay in Fight or Flight mode and does a number on the nervous system. And having low levels of zinc and magnesium prevent the body from being able to rid excess copper. So something else to thing about......Thanks for your postsBTY, I grew up in the country on well water. So maybe will ask Doc for testing here just to check.... Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 6, 2015 Author Report Share Posted August 6, 2015 Sue1234,Have you found other foods have caused symptoms for you? If so, do you mind sharing them? I just miss the connections there somehow. But would love the advice and to know what to avoid and how you have linked them together. I guess since my reaction is not immediate I just haven't put two and two together.Thanks so much for your post, last night was better. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 6, 2015 Report Share Posted August 6, 2015 Glad you are doing somewhat better, LouLou! The only other thing that gave me flushes was yogurt/kefir. I have no clue why, except for the probiotic part of it. Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 6, 2015 Author Report Share Posted August 6, 2015 Sue1234I will stay away from that as well.thank youLoulou Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 15, 2015 Author Report Share Posted August 15, 2015 Hi. I was doing great for a few days and last night the clamminess started back, I may have slept an hour. The crazy thing is that during the day it happens only a couple of times and when I am moving around cleaning, but last night within minutes of laying down the clamminess started and continued all night off and on. I am a mess. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted August 20, 2015 Report Share Posted August 20, 2015 Nearly all your symptoms are probably a coping mechanism or consequence of disordered postural blood flow. Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 21, 2015 Author Report Share Posted August 21, 2015 Ramakentesh,I thought that lying down would help blood flow issues. It's normally harder to stand. I guess if I can learn to read my body better, I may be able to figure it out. Do you have an issue with clamminess? I have found that ice packs seem to be slowing down my body's reaction to showering and blow drying my hair and with temperature changes from being inside and going outside...but I do not think I'd like taking ice packs to bed with me. hahaha Quote Link to comment Share on other sites More sharing options...
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