Lizzegrl

It is a big ditto here too! I take two showers a week at most with not hot water and planning ahead so that I have alot of rest afterward because it totally wipes me out. I had to give up baths when I was younger because I just had too many concussions fr om passing out. I had a no baths without my mom at home rule because I was too unstable. I also get lobstery and can't guage temps very well so I just avoid them. My entire body gets blotchy, I get heat rushes, then chills... you name it. After waking up naked and with a bloody head once too often a hot shower or bath just has no appeal. So I do alot of washing up then cool showers twice a week. It is so nice to have found a place that validates some of the previously unknown wierd stuff that has gone on with my body! I've had this thing since birth, but they have never been able to pin down what the actual cause was until this year. Finding Dr. Grubb was a miracle for me and I'm still learning what the disease actually is and how much it has impacted my life.

My sister actually asked Dr. Grubb a similar question simply because she wasn't quite sure what to make of the disorder. He was quite emphatic that simple deconditioning and POTS are very different things. In my case, since I am hyperadrenergic, it can happen incredibly fast and I can drop like a stone from functioning to on the floor exhaustion in two minutes. He said that while keeping physically active in some manner is ideal, i also can't expect my body to just 'recondition" it doesn't work that way. He made a point of saying that all those things that are recommended for maintaining a healthy heart, will make it easier for my body to deal with POTS episodes, but it is not a matter of just working out. It just doesn't work that way in my particular form of POTS. I don't know as much about secondary POTS however.

I voted no, only because my immune system has always been a mess. I was in PICU when I was born for some unknown illness and it hasn't gotten much better. In my case, I've had Gamma globulin in the past and it helped, but they haven't pin-pointed exactly what is the root cause. I have the genetic form of POTS, so they know I have at least one gene defect, but they don't know what else is going on in the immune connection. It is just too much to worry about to think about finding out anything else.

I get all of the above from steroids. It is a serious, serious drug and I only take it when I absolutley have to do so, because of the massive side effects and stuff it does to my body. sunburn face, rashes, weight gain, increased appetite, headaches, tachy responses and increased blood sugar are all things that it does. I happen to get them all...lol Ohh and the crying at the drop of a hat, not sleep and gruuumpy. Woooohoo it is all fun. My asthma flairs adn only responds to high high dose steriods, so I'm stuck. Right now, my finger and toe nails are all peeling off, and my fingertips are starting to bleed and feel like they have been sand-papered down. It is a joy breathe, but dang.. the 'roids are not fun things at all. Big big warning - do not just stop taking your steroids even if you hate them. Talk to the doc first. Tappering doses down is so important to prevent some of the things that can go wrong. FYI, in the hospital, tell them to do a really slow push if they are giving the steroids iv. If they do it too fast you get the rushing, flushing tachycardia thing.

Ladies, I feel like I'm reading my own mind on this thread! I am 40, single, potsy, asthma-inflicted and sick of being sick and alone. I want to have fun, I want to DO things! I've tried the online thing, but frankly, have been too sick this past two years to get too far into it. Is it possible? I've sort of given up on the baby idea due to the lousy genes I know I carry, and my constant fatigue, but **** it.. I want a husband, a life! It is good to read that I'm not alone is this whole struggle. Lets keep on fighting the battle. I will keep hoping that there is a guy out there for me willing to take on all of my baggage, genetics and all.

Angela, I am in the same boat, so don't feel like you are alone. So far, my job has been cooperative, but i'm back on leave as of this week, with only 5 weeks of fmla left. It is scary, and tiring, but I've tried to prepare myself by saving money, talking to my doctors openly about my fears of losing my job if I am off too long, etc. I agree that so many companies encourage people to come in sick then spread it around!! I hate being exposed to the constant germs, so I work really hard at keeping everything I touch clean, avoiding the sick people, and washing my hands constantly. It does help, but we can't avoid it always. Do you tell people that you need ot avoid germs? It has actually helped me to let people know that I have an immune issue and get sick really easily, so they try to help me out by avoiding contact too, when they are sick. Every little bit can help.

Biz biz, as a frequent episoder, I have a few pieces of advice. I don't drive if my rate gets over 120, because after that happens, I often get another surge or drop in rate that can cause loss of consciousness. I don't want that to ever happen driving. Just a thought. Not a fun one, but one that should be considered. I've never had luck with the val salvo move, but laying down with my head and legs level for a good half an hour tends to get things headed in the right direction when I'm svt'ing. If it doesn't after that, or keeps increasing, I call for help or at least company to wait out the episode. If you keep up the episodes you might want to talk to your EP about looking for the extra pathways. My doc said that ablation isn't all that successful with POTS pathways in the long run, but it worked for about 5 years for me, before I was diagnosed with primary POTS so it might be a good thing to address. It is an awful feeling to have the heart out of control, so just make sure that when it happens you put yourself into a safe situation as soon as possible. Don't stay at the barn alone, or go driving somewhere too distant that if something happened you couldn't be found. Triggers - I have found that lifting things over 20 lbs or so can trigger an episode, as can frequent stooping and lifting smaller amounts. Also, not getting fluids and rest can do it to me. Sweating is a big no no in me. When I get too hot and start to sweat too much, I lose fluids and the rate increases too quickly so I have to avoid overheating. Trying to keep yourself well hydrated and not too warm may help with episodes. Track the things that youare doing when your heart takes off, so that in the future you might be able to find your triggers. It could help prevent them in the future! Good Luck Liz

Wow! Thank you all so much! My pmd and pulmonary guy have had this ongoing argument about the severity of my asthma, so it is likely that what is going on is the POTS, which makes the difficulty breathing much worse. My PFTs all have come back pretty good, so they were about to do some more in depth testing, when my heart went wacko again and the rate wouldn't drop below 115-120 unless I was asleep. I will talk to both Dr. Grubb and my pulmonologist about the mast cell activation issue. I am a bad fainter so I do need to get something done about a bracelet. I've lost count of my concussions over the years. The place I am ordering from does have an online registry, which I just discovered so that is a big bonus. Firewatcher, it is funny you should mention seeing someone gain relief from their inhaler. That is how I decided that the my asthma might not be the issue and that my heart issues might be flaring again. My inhaler, which normally gave me relief, really wasn't working and I got worse.

Thank you! I can't take beta blockers because I have severe asthma reactions to them. I haven't had the mast cell activation tests, but I guess that might be the next step. Right now, we are working on getting my blood pressure under control and getting used to the diagnosis! It has been a long road.

I am newly diagnosed with hyperadrenergic POTS, by Dr. Grubb. It has been suggested that I get a medical ID bracelet due to the POTS and severe asthma. I am trying to figure out what I should have put on the bracelet, since POTS is such an unknown condition. Does anybody have any experience with this? Any suggestions would be appreciated!

I have found that lifting things sets off tachy episodes. I cant' lift my nephew any longer, now that he weights more than 25 lbs. I talked to Dr. Grubb and he said that it was very likely that lifting could do it. I try not to lift anything heavier than my purse now, so that i don't set off an episode.