Tammy

For the most part, I would do it all the same, minus not going on that bike ride that caused over-exertion the first time and the start of POTS and than going back to work after my daughter was born causing the second and worse ever flare that I'm still in years later. But I'm trying to learn from it and realize what my limits are and make decisions that are best for me and not do what others around me think I should do or not do.

I've never been checked for Mast Cell, however I have the Hyperadrenegic version of POTS. but as stated "Most important for me is the idea that I can't get "too"- too happy, too sad, too stressed out, too energetic, too tired, too hungry, etc. That will set off an episode. Strong chemically smells will also tip me off. " I have this exact problem! Now I'm wondering if I too should be checked on this? However, I do not have any skin issues, hives, skin reddening, etc. So I'm not sure what to think? Interesting though!

Hi and Welcome Sorry I don't have any ideas as to how to raise blood volume in the brain but I definitely would second that she should ask her doctor to be tested for Mastocytosis if she hasn't. I know too how daunting getting to a doctors and than feeling too sick to wait in the waiting room is and so one, but maybe ask them to have her brought back into the room and bring blankets/pillow with for comfort while you wait. Also, does she take over-the-counter Benedryl and Zantac for symptoms at all? If she already has these in her regimine, than it might not be Mastocytosis, but it really might be a good idea to check. Take care, Tammy

I take 1/2 of .25 and it works as needed very well for me. It does make me a bit 'spacy' but sometimes that is okay as long as I don't have to make a decision of sort. I don't drive much, but if I did, I wouldn't if I had xanax in my system. So as long as you just take it as needed, you shouldn't have to worry about tapering off.

I have exercise intolerance too. I have never been able to run much, even as a little kid I was always the slowest runner for kick ball and had to rest during the games or activities frequently, however I didn't feel sick or have the symptoms I have now, I just tired easily. I have been able to run for years, I'm only able to do very paced walking and only for a few minutes at a time before getting lighthead/weak. I'm not sure what my hr/bp does always, but sometimes it get very narrow pulse pressure from activity which makes me feel so weak I can't even talk or open my eyes, etc. My daughter who is 3 has much more energy than I've ever had and it's fun to watch her and know what it would be like to be well

Ernie, Thank you for pursuing correction to what was done to you so that it prevents him from doing it to someone else. No matter how hard the fight might get, don't give in or else he wins. You are right in stating that rape victims are violated twice, once by the person who did the act and second by the system or those around them who may not believe the victim or just look the other way. I'm so sorry this happened to you and hope you can find peace with the help of support sites, a good psychologist and family and friends. Someone who can understand and relate to what has happened and how they coped could be very helpful. Take care, Tammy

Uggg, I hate feeling yucky after I take a bath or shower. I feel completely drained and weak and lightheaded. So here I am resting in bed 'recovering' from my bath I took 2 hours ago. This is so frustrating. I know I've had this for enough years that I should just be use to it, but every now and than it just frustrates me to no end! I hate all the symtpoms every day varying hour to hour and this just puts the icing on the cake. I just want to be well - Tammy

I over-do-it every day at some point - only because my daughter is 3 and she needs mom to do a lot for her. Right now I'm laying down in bed because I was trying to sort through her vhs tapes and organize them a bit (and was kneeling to do so because of the shelves they are on), which apparently was too much for my body today, and as I'm resting she's bringing me things from the refridgerator that she wants to eat so I keep having to get up and cut up fruit or put something in the microwave, etc. as I'm feeling like I'm going to collapse. And I have to second that what I've ate, drank, weather, stress, my cycle, etc. all affect what I'm able or not able to do each day. So we all can try to not over do it, but circumstances beyond our control may prevent that from happening

This use to happen to me more so before I was on a beta blocker. Also eating more meals a day but smaller amounts might help?? I still get the shivers/tremors bad if I get any sort of adrenaline reaction, ie., suprised, startled, shocked, excited, etc. The other night it was snowing and we sort of lost control of the van while we were driving for a bit due to snow conditions and than about a few minutes later, I started shaking to where my teeth were chattering and it lasted for about 20 minutes. I was in church so I couldn't exactly do much about it but to just let my body do it's thing So yes, it is a POTS thing and possible a beta blocker or a benzo may decrease the frequency it happens.

I can truly say that when I get horribly stressed with anxiety/worry about a situation, my symptoms severely flare. However, Xanax has been a God send, but it is hard to get a doctor to prescribe it so this may not be an option for you. However, if you take it only as needed, it really, at least for me, prevents an even worse and longer flare for me... it seems to help my physical symptoms sooooo much! I get fast heart rates, terrible shakes, chills, sweats, nausea, etc. and this all calms down with Xanax. Hope your feeling more at ease/calm soon

I have to say benedryl does help the adrenaline rushes and also tylenol. I have actually taken Tylonol PM in the middle of the day to settle down an adrenaline rush, and it works!!! Also Xanax is a God send but doctors don't like prescribing it, which if you only take it during the worst episodes infrequently it isn't addictive. Klonopin has helped alot to reset my system if it gets really out of wack and of course Atenolol everyday. However, Klonopin makes my sleep even more fragmented so I only take it for a short time when I crash so that my body resets it self.

Just give your doctor a call and ask him or his nurse what's okay to do. That is one thing they usually can help us out with Also taking tylenol usually helps my system settle down a bit during a virus. I also have the hyperadrenegic form so our bodies usually wind up when under stress such as from a virus rather than the other way. When my husband gets sick, he just falls asleep and will sleep for hours and such, where I'll be exhausted but my body won't rest and my hr will increase and everything else flares too. Our bodies are just wired different I think.

Has anyone had an echocardio gram WHILE standing? It seems when they hook me up to all the electrods and than while I stand there and wait for them to get their screen ready, they always notice that I have something strange with the read out, but when they have me lay down and actually do the echo, it all seems mostly fine (other than some mild regurgitation on two valves which is apparently normal). So I'm wondering if anyone has had one done while standing and what it showed? Since my symptoms are so much worse when I'm on my feet, I wonder if an echo could be done when I'm upright.

Since I have the hyperadrenegic version of POTS, massage helps a lot but can't afford them, so only get them very rarely, but I feel wonderful for a few hours after them, it is amazing! Affects don't last long, but those few precious hours are wonderful. Also, if my ANS is being hypersensative and feeling adrenaline rushes, a simple back rub will help calm it down.

I'm definite this is a genetic thing for me, however, it didn't show up for me until I was in my late 20's. I always was more tired than my friends and needed naps all through my school years, but I was able to go to school and work part-time and on weekends, I'd hang with my friends, so I never saw it coming. It took exhaustion and a nasty virus to get the whole thing rolling. Now that I understand it's genetics, I'm so happy we have our daughter who is not biologically ours, so hopefully she won't have to suffer everyday with this awful illness like I do.... I hate being homebound and so weak, but at least my body was to sick to reproduce and continue this genetic flaw I'm so thankful we live in a day in age where we can learn about genetics and make family reproduction decision based on that... why anyone would risk passing this on to a child is beyond me??????

I get these symptoms too. There's times it really hits hard and other times it just happens for 10 or 15 minutes and than it goes away. The worse happened a few years ago, as I got out of a swimming pool. About a minute or two after being out of the water, I just crashed... shivers, nausea, horribly weak, etc. I don't know if the change in temp or that I had burned off some energy so my blood sugar dropped or what, but it was awful. I haven't been well enough to swim since, but would guess that the same thing would happen if I tried.

I do this all the time. It's sooooo frustrating. I always have plans for the day in my mind when I wake up, i.e., do dishes, do some laundry, run some errands, take care of kid, dogs, make meals, etc. THEN I stand up and usually I do well for the first 10 minutes and after that (as my hr has been cruising along) I'm completely weak and too sick to even function, so I have to lay back down and realize that I'm not going to get more than maybe one thing done, which is of course, take care of my daughter's needs as I'm able. Some days I can slowly get a load or two of laundry done and the dishes, but this takes me all day with lots and lots of breaks throughout. I'm so amazed that some of us are able to hold jobs, so there are so many levels of severity of this illness.

Ugh, I hate when that happens. I just had that about 1/2 hour ago, and yes, the breathing thing really does work, but you have to get your mind to relax (think happy thoughts) while you do the breathing trick (which is hard to do). Are you on a beta blocker or benzo? These can both help lessen (doesn't completely fix) the frequency of adreanline rush symptoms.

I know what you all are saying too. Frequently people say "Oh, you look good today, you must be doing pretty good today" as I'm feeling terrible and about to be sick to my stomach, etc. BUT, I must admit, that if they were to say "oh, you look terrible, you must be feeling so sick" I'd probably want to smack them too! I myself try to say positive things to people even when I know they are feeling unwell as this is what may help them cheer up if they are struggling with the day. Thank God we all have support here where we can say how we are really feeling and know that we all understand.

I don't get them, amazingly. However, my husband and daughter, both who do not have POTS and are very healthy, have the same problem. If my daughter eats Strawberries, she gets a mouth full of cluster like sores and they cause her so much pain. She's 3 and she's had them flare up since she was 1. Mostly for them, acidic foods citric fruits seem to cause more problems.

Hi Dayna, How have you been? I haven't been at the forum as often either but good to see a few familiar names - Tammy

I can't tolerate overly sunny days as I'm very senstive to sunlight and heat also, but yet, right before it rains or snows, my symptoms flare BIG time, and typically I feel like death warmed over so to speak. It's the barometer dropping is what causes the problems and makes the body work harder which most people don't even notice, but just like how our bodies will pick up on coming down with a virus before most people even realize they are getting sick, our bodies get thrown off much easier. Does your symptoms seem to get better once the rain or snow is done? That is one way to tell if the weather is playing with your symptom flares.

My mom had this for many years while I was growing up along with many other symptoms we now can believe was related to dysautonomia. I now have POTS so can guess that what you are describing can be part of it.

With all the wonderfully unpredictable symptoms we get, plans for social events usually get cancelled. People just don't get how frustrating this is for us and them being frustrated with us for not 'trying' hard enough to be social just really stinks. Mostly I figure they haven't walked in my shoes so they don't have a right to critize me in this way, but every now and than, it gets under my skin and really irritates me, especially when it's my in-laws! thanks for letting me vent

I've never heard of this test, what type of doctor do you go to for it? My cardio has done a TTT but he's never mentioned this one. I can't blow up a balloon or even a beach ball, and singing more than a minute of a song is too much, so would guess I would do very poorly on it... however, is there a point to having this test done - can they do anything for a person so they are able to blow up a balloon, sing, etc.????