puppylove Posted March 21, 2012 Report Share Posted March 21, 2012 I always get the chills so I like it when it's warm. If I get overheated though I am so much worse. Last year before we knew what was wrong with me we went to Disneyworld in July. It was literally 100 degrees and we walked around for eight hours. I felt SO awful. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted March 21, 2012 Report Share Posted March 21, 2012 I absolutely LOVE taking a warm bath and it is the ONLY thing that relieves my pain. I have pain all the time it seems, except when I am in a bath. That said, according to every doctor I have seen, they are forbidden, but it is the one pleasure I allow myself. I figure I am stuck in bed all day, given up SOOOO much, I will find a way to make it work. I have to take a bath anyway- because I cannnot stand or even sit on a stool in the shower- so I have no choice. It also relieves my anxiety... but after a time, I feel the symptoms coming and I know it is time to get out. My protocol is that I let all the water out and freeze like crazy and put one of our huge towels over me after the water drains and wait about 15 min or so until I am no longer red (and I don't take HOT baths like I used to- but warm) and I just wait. I should say, I NEVER bathe without my hubby home because I need help in and ESPECIALLY out, then he helps me get out, finished dried off, dressed. Maybe it isn't worth the taxing it does on my body, but it is my ONE thing that I do that I am really not supposed to and eventually even my hubby agreed that as long as we made a safety plan, it was okay. I still occasionally have syncope, even after all the precaution, but NOTHING like I used to. Before I really was diagnosed or had figured out what was happening, at least 60% of my syncopal spells were after showers or baths. So we have it down pretty good now. The most important thing is that I don't get out until I am totally cooled off. I shiver but am covered with a towel so its not so bad. I always have my cell phone up there and then text him that I am ready to get out- and then he comes and helps- and usually carries me back to bed... I don't really even trust myself to crawl. When I am having a bad day, or BP is really low, I won't take a bath.. so I am careful and I always take my BP before I take one. But it helps so much with my pain management and anxiety that I think it is more of a plus than a minus right now.Please, no one yell at me. I know, I know, I am not following the real rules... but sometimes we just have to adjust and live the best way we can.Jen Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 21, 2012 Author Report Share Posted March 21, 2012 Just had to smile after reading that last bath post Jen Quote Link to comment Share on other sites More sharing options...
bunny Posted March 21, 2012 Report Share Posted March 21, 2012 Add me to the "feels worse" column. I LOVE the feeling of a nice hot bath, but I've come too close to fainting while in the tub to risk it. I'm usually very unstable/dizzy when trying to get out of the tub after a warm bath. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 21, 2012 Report Share Posted March 21, 2012 I am the only POTSie on the planet that feels better in the heat. Up in Queensland walking around 105F and 90% humidity I felt great. When it was cold I always feel like crap. However I always seem to relapse between October and December our spring or summer which is the same as patients with Myasthenia Gravis. Quote Link to comment Share on other sites More sharing options...
corina Posted March 21, 2012 Report Share Posted March 21, 2012 Oh Rama, there are two of us (but more i suspect!)!!! i always feel better in heat too! and i actually know someone who moved to a warmer climat because she couldn't stand the cold anymore (and it wasn't even that cold!). although the warmer climat made her feel better she returned as she couldn't miss her family any longer. Quote Link to comment Share on other sites More sharing options...
issie Posted March 21, 2012 Report Share Posted March 21, 2012 I like the heat and humidity better too. I moved from a cold place to a very hot place. I can't take it as hot as it gets here - but, I prefer the heat. Rama, what's this about people with MG and the summer heat? What's the connection?Issie Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 21, 2012 Report Share Posted March 21, 2012 I haven't even attempted a warm bath because warm showers make my breathing worse. I literally have to take a shower laying down in the tub because standing with the heat is bad. On the opposite end - The cold weather seems to make me flare and my breathing worse while the warm 70-80 degree weather seems like the best for me. In the cold weather I have to bundle up and that makes me hot and sweaty and makes me flare... Quote Link to comment Share on other sites More sharing options...
issie Posted March 21, 2012 Report Share Posted March 21, 2012 Funny, even though I like it better hot - weather wise - too hot will make me flare. I can't take an extemely hot shower or I flare - but, I don't like cold at all - never have. I have to sit on a shower chair to shower - can't stand at all and using my arms overhead - like to wash my hair will send me spinning. Defintly brings on symptoms. It takes me forever - because, I have to take so long to just get the shampoo done and then conditioner and rinsing - then bathing - you get the picture. Sometimes, I'll run out of the warmer water. LOL What we have to go through!Hey, Rich - your inbox is still full.Issie Quote Link to comment Share on other sites More sharing options...
forevertired Posted March 21, 2012 Report Share Posted March 21, 2012 Forevertired,Sorry, I wanted to quote this line " Does your blood pressure range a lot, like mine does? Or does it only range within about 15 points (like 115/70 to 130/80 for example)?" so it would call your attention to the answer, but I cannot figure out how to quote part of a section, ( tried highlighting it and hitting quote-maybe someone can tell me)Anyways, generally my BP is high. Off meds it was all higher than 135 systolic and 85 diastolic, it bounces in the opposite direction of the HR, but stays over those numbers. On Propranolol 140 a day ( 80LA AM & 60LA PM ) it goes a little lower, and now with 75 of Losartan on board it seems to go to a lowest of 110 Systolic and 73 Diastolic- standing, but still fluctuates.Off topic but did they come up with something to help you sleep?Unfortunately, I have not yet found a doctor willing to prescribe me anything to help me sleep. I am hoping that once I get to see one of the ANS doctors at UW Med center, that they will be willing to prescribe me something. Quote Link to comment Share on other sites More sharing options...
forevertired Posted March 21, 2012 Report Share Posted March 21, 2012 I haven't even attempted a warm bath because warm showers make my breathing worse. I literally have to take a shower laying down in the tub because standing with the heat is bad. On the opposite end - The cold weather seems to make me flare and my breathing worse while the warm 70-80 degree weather seems like the best for me. In the cold weather I have to bundle up and that makes me hot and sweaty and makes me flare...I have the same problem. When its too cold out, (less than 70 degrees) my pain and shortness of breath get worse. I also shiver like I am hypothermic when it is cold out, and my movements disorders are worse. I end up bundling up in layers of clothing, but then I sweat a lot, and the temperature changes from going inside to outside to inside are rough on me, as I am still cold when outside, but then too hot when inside. When it is too hot out, my fatigue and shortness of breath get worse. I am best POTS wise when the temperature is in the mid 70s.I love hot showers and hot baths. They help considerably with my muscle pain and relax me. However unfortunately, my chest hurts, it can be hard to breathe, I feel palpitations, and get really fatigued from the heat. I hate that POTS has taken that from me. I still take baths occasionally, but it is usually with a cooler temperature than I used too, and for a shorter length of time. I avoid hot tubs now, as I can only tolerate them for a few minutes before I have to get out. Even though my POTs gets worse with hot showers, I still take hot showers, as anything cooler than hot, causes my entire body to shiver and my teeth to chatter. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 22, 2012 Report Share Posted March 22, 2012 Interesting. I used to wonder whether it was a blood volume thing or something? No idea...I used to even tolerate alcohol quite well for years. I havent dared lately though... Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 23, 2012 Report Share Posted March 23, 2012 I am the only POTSie on the planet that feels better in the heat. Up in Queensland walking around 105F and 90% humidity I felt great. When it was cold I always feel like crap. However I always seem to relapse between October and December our spring or summer which is the same as patients with Myasthenia Gravis.I'll let you in on a secret Rama, you're not the only one that feels better in the heat. It's the humidity I don't particularly like, but I am unsure about its contribution to my POTS. I have this upcoming summer to figure this out. Could this be the reason why both of us respond quite well to mestinon (normally used to treat MG)?! Quote Link to comment Share on other sites More sharing options...
issie Posted March 23, 2012 Report Share Posted March 23, 2012 Good question Alex - I like the heat better too and right this minute am experimenting with a natural supplement that is equivalent to mestinon and --- it's helping.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 23, 2012 Report Share Posted March 23, 2012 Every time I sit, stand or exercise for too long I get very vasoconstricted. My initial thought was that this was from too much NE and NET transporter deficiency which i was originally told I had. Then when i read that it could be a coping mechanism for abnormal vasoconsrtiction in the stomach, ang II elevations or even just a coping mechanism for denervation I got very confused.Still I find a bath at the end of the day and then straight to bed makes me sleep better and improves symptoms. Quote Link to comment Share on other sites More sharing options...
issie Posted March 23, 2012 Report Share Posted March 23, 2012 Every time I sit, stand or exercise for too long I get very vasoconstricted. My initial thought was that this was from too much NE and NET transporter deficiency which i was originally told I had. Then when i read that it could be a coping mechanism for abnormal vasoconsrtiction in the stomach, ang II elevations or even just a coping mechanism for denervation I got very confused.Still I find a bath at the end of the day and then straight to bed makes me sleep better and improves symptoms.I don't know what happened above. That one needs to be deleted. I'll try again.So, maybe go back to your original way of thinking. So much confusing and conflicting information and it might not apply to all of us. I'm thinking I'm vasoconstricted and vasodilation is working much better for me than vasoconstricting. I do have NE issues and lowering them with meds is also helping - now, whether it is a NET dysfunction - not sure - but, I do know that my NE levels are too high and that increases the surges. So, lowering them really calms the nervey, jumpy, panic type feelings. If we do vasodilate in our abs. but are vasoconstricted in our peripheral limbs - if we don't get the flow better in our peripheral limbs - the most amount of blood will not circulate properly. Just me thinking - I may be totally off. But, I know that when I tried constricting things - things got worse for me.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 23, 2012 Report Share Posted March 23, 2012 Increased vasoconsrtiction impairs vasomotor activity and results in pooling in low flow POTS. Vasoconstriction could impair cerebral autoregulation. Quote Link to comment Share on other sites More sharing options...
issie Posted March 23, 2012 Report Share Posted March 23, 2012 Increased vasoconsrtiction impairs vasomotor activity and results in pooling in low flow POTS. Vasoconstriction could impair cerebral autoregulation.Yeah, isn't that what I just tried to say? If the veins are too constricted the blood isn't going to flow properly and it could also impair cerbral blood flows and autoregulation. Thanks for the right words - Rama. The blood would pool in the legs/feet - arms/hands because of the veins being too tight and not flowing properly.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 23, 2012 Report Share Posted March 23, 2012 I think it mayb have to do with the sympathetic activity moving the cerebral autoregulation curve to one side and not buffering from BP fluctuations in the brain. But then why doesnt hypertension result in the same? Quote Link to comment Share on other sites More sharing options...
issie Posted March 23, 2012 Report Share Posted March 23, 2012 I think it mayb have to do with the sympathetic activity moving the cerebral autoregulation curve to one side and not buffering from BP fluctuations in the brain. But then why doesnt hypertension result in the same?Hypertension can also be corrected with vasodilation - many of the bp meds do that. Since I do have high bp's when I take things to vasodilate - that comes down too. Quote Link to comment Share on other sites More sharing options...
bunny Posted March 23, 2012 Report Share Posted March 23, 2012 I don't have much bodyfat, so I get chilled quite easily. I seem to be able to handle lower temperatures alright once my body adjusts to them (takes about 24-48 hrs), but add any sort of a breeze and it's instant chills that need an external heat source to shake off. So overall, I prefer warmer temps, but hot + humid really wears me out and makes me POTSy. Quote Link to comment Share on other sites More sharing options...
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