Loulou

Tricks, I have just one.... I lay on my right side so I can not feel my heart pounding against my mattress and use a huge body pillow that goes between my knees and arms,somehow it helps my hips and pooling blood and keeps my arms at the right height and it is good for snuggling too....

Hey. I have POTS and IST. As soon as I wake up, I am at least 95 before I even get out of bed. I have very high heart rates on my bad days, but 120/130 is my average on good days. I am a hyperpotsie and do not tolerate meds well. But it is good to hear some of you are able to get some help with meds. I don't get relief from my heart rate, but I have good and bad days with all other symptoms.

Showers!!! ugg.... I shower with my fan on and bathroom door open, while sitting on a built in seat in lukewarm to cool water with the shower curtain open on each end to let the cool air in on me. I wash my hair first, then sit for a minute or two then wash my body quickly. Sit for a minute before raising my hands to dry off and immediately grab my big ice packs placing one on my back and one on my ribs just above my stomach. I stay that way until I feel everything is clamming back down, then I keep my ice packs in place while I continue to do hair and make up. If my ice packs do not work then it's time to cozy up on the floor for as long as it takes....Funny how showering used to be so wonderful.

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

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.

Thank you all for posting. I think I will try the food diary. The thing about the diary is that I don't get symptoms right away . thanks guys

I always have tachycardia, but I get chest pain when I am badly dehydrated. My doctor seems to think it is the muscles in the chest wall above the heart that is cramping because of dehydration. I drink extra Powerade when it happens. Hope your daughter is feeling better soon. Loulou

Very sorry you had to make that call. Its so hard to do. I cried too.

Hi. I am learning that I do have food triggers and am not happy about that So, since small meals are suppose to be good for our potsie bodies, can you guys please share your daily routine, I need some help here too. I tried trail mix type things and just learned with the help of Sue1234(thank you), that nuts seeds and chocolates were triggers. So what do you all eating and how much are you eating daily. I just don't know how to plan so that it is still healthy, and am like many of you, I can't stand in the kitchen making food with long prep times. You can only dance around so much cutting up food before you cut yourself up. Hahaha, just don't ask me how I know about that one!!!! So please share your menu with us all. Oh, don't forget portion sizes too, I think it looks like just a little food, but its really not Potsielou

Hahaha, I am afraid it will look crazy and I will not want to be seen in it. A co worker of my husband gets medication mailed to him that has to be kept cold, so he sends these really good ice packs for me to use, I just haven't figured a way to make it look good....nor do I know what material to use. But I just might be able to get outside if I can figure it out' LOL

Sue1234 I will stay away from that as well. thank you Loulou

Thank you

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.

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 posts BTY, I grew up in the country on well water. So maybe will ask Doc for testing here just to check....

Hi.... Has anyone tried to make your own cooling vests, I find in July and August leaving home is almost impossible. I can make curtains, but that's about it. Hahahaha. Any suggestions? POTSIE LOU

yes, all wonderful things...... the temperature year around would be 69 everywhere

How do I find this Meet others thing. I am interested! I am good with sharing my info and others contacting me. Loulou

mine might be, Gone POTSIE

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.

Hi everyone, I have sleep issues as well. And one thing that has helped me is a sound machine through "Homedics". I bought it at Bed,Bath and Beyond. It was $79.00 but I used a 20% off coupon, so the price was a little easier on the pocket. It helps me rest more during the little sleep I do get. Yes, just like you I still have nights where I am up all night, but that is a POTSIE issue that we will always have I guess. But when I get to the point I can not make it any further without some sleep, then I use benadryl, but just when I have to have sleep because it will worsen dehydration, so I drink extra powerade to make up for what the benadryl drys out.

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.

Sue1234 I 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

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.

Dancer65 I 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...

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