cmreber

I tried raising mine also and didn't find it to help any. It didn't seem to have any adverse affects for me, but it didn't do anything to help either & my poor husband was uncomfortable! Lol

It's interesting to know it happens to others! And sorry for all of you that experience this too...it can get really old! I haven't been able to pinpoint exactly what sets it off or makes it worse for me. Definitely if I try to have any caffeine, if I'm really tired, or if I have one of those weird adrenaline rushes for no reason. But like, all of today they have been pretty bad & I have been doing nothing but watching movies lol. Perhaps it was Hugh Jackman without a shirt that got the adrenaline going or something hahaha

I have never had the steadiest of hands, but ever since all of the "POTS stuff" started, I find that randomly and often now my hands are shaky. Sometimes it's hard to even put on mascara & my handwriting has gotten even worse than it used to be ( which is saying a lot!). I was wondering if any of you have also experienced this and if there seems to be anything that sets it off for you?

A good friend of mine steered me to a great website and I just thought I would share with everyone on here. It's called "But you don't look sick.com". http://www.butyoudontlooksick.com/ I'm sure every single person on these forums has dealt with this along the way and it is so helpful to share this experience with others who understand. One of the hardest things about POTS and many other disorders/diseases out there, is that you don't actually LOOK sick. Which makes people say, "I don't understand what's wrong with you, you look fine to me." So when you flake on your friends once again, or can't clean the house today, or couldn't manage to go shopping and make dinner, or just don't want to socialize with anyone, people can look at you with such judgment sometimes because they don't realize what is really going on inside. And if you are a young person (as so many of us are on here!), then it can be even more difficult to make people understand because somehow our society equates youth with good health. Hope someone can benefit from this! And hope everyone on here is having a "good day"

It's interesting that you bring this up, because I have recently been thinking about this, wondering if my very sudden acquisation of POTS was really as sudden as it seemed. I actually think that it was always there, just not very bad? I can remember starting from my earlier teenage years, there would be times when I was taking a hot shower, and suddently, my vision would go red and my ears would start ringing, and I would have to get on all fours and stick my head out of the shower curtain until it went away. Of course, looking back on this, I probably should have mentioned this to my grandma (who raised me), but I guess I thought nothing of it. Also, as I look back, probably two years prior to all of this POTS stuff, my desire to do physical things definitely declined. At the time I just chalked it up to being tired from working so much (I was doing the 5am-3:30pm shift at the hospital), but now I wonder if my body was constantly fatigued because of a minor form of dysautonomia? The most interesting part about the whole thing is that my husband broke his back right before my body decided to fully go haywire. It makes me wonder if I always had been living with a very minor form of POTS and then the sudden and prolonged stress of my husbands accident sent it into overdrive? It would make sense because over the past year and a half since I was hospitalized because of fainting and heart rate/blood pressure issues, I have steadily gotten better, though I am not really "normal". If that's the case, it kind of freaks me out...does this mean if another very traumatic, stressful event occurs, will I go back to square one again?

TheLivingDead, It's interesting that you say this is the symptom that has lingered the most. That seems to be how it is for me too. It has been almost two years since I first discovered I had POTS. It came on very suddenly; I basically went from kickboxing, snowboarding, dirt bike riding, you name it...to passing out doing mundane things and not able to even walk through Walmart! I found the right medication, and though progress has been slow and there are definitely times of regression, for the most part I am getting closer to "normal" every day it seems. The thing that hasn't gone away, however, is this whole issue with word recall, especially when it is a "bad POTS day" or when I am just extremely fatigued. Sometimes I can't even remember a simple word, say, like "apple" or "market". It is seriously frustrating! My husband has been incredibly wonderful through this whole thing, and he helps me laugh about it when I get too frustrated, which definitely helps! But, the worst part is that I am an author and while working on my current novel, the word recall can be such a problem! I have to jump online and scour "dictionary & thesaurus.com or google" just to get that "ah-ha" moment when I see the word I was struggling to pull out of my brain! It makes me wonder if this will ever truly go away, or if this is something people with POTS (even if it happens to go into remission) have to live with indefinitely?

Thanks Corina, I am thinking that its probably the same for me, and most likely the gen. Anesthesia that's the culprit here. I actually have a neighbor who has been hospitalized after gen an due to crazy low blood pressure & she doesn't even have POTS. I have only had gen an once before and had no trouble at all, but that was before I had POTS. Thanks for the response and it does help to know someone else's experience with it!

Hello everyone! I just had a knee arthroscopy yesterday and I am currently taking Norco for pain control. I have been noticing that my blood pressure is running on the low side and I was wondering if anyone here has experienced the same thing? I'll probably ask my doctor tomorrow, but I'm wondering what would be too low of a pressure? It's been on average maybe around 90/60 the lowest reading being 87/52. I take 50mg of Metoprolol (a beta blocker) twice a day and I'm wondering if its that, the Norco or just an after effect of the general anesthesia. If anyone has experienced this after surgery, I'd love to hear your experience until I can talk to the doc tomorrow. Thanks!

I am 26 and had sudden onset of POTS. It's so weird because up until December of 2010, I was totally healthy. Hardly ever sick, super active: dirt bikes, snowboarding, mountain biking, motorcycle racing, surfing, hiking, kickboxing... you name it, I did it. Then, bam, out of nowhere, I suddenly had no energy and felt sick and out of breath. Then I was passing out and had crazy tachycardia to where I had to stay in the hospital for three days! Before I was on my meds I couldn't even walk across the room, but fortunately now I am on a beta blocker and have begun to get my life back. I don't have any other conditions as far as I know and every day I am working hard towards getting back to "normal", though some days that is easier than others! It is so strange to see how much of the body is affected by dysautonomia though, which is rather scary to wonder what other parts of my body's system might be affected now or in the future. I think one of the hardest parts for me about this disorder is that I am so young and on the outside look completely normal...people look at me and go, "You're young and healthy so why can't you do so many things?" and it makes me feel a bit lousy /embarrassed sometimes because they just don't understand what is going on inside my body and how I (and everyone else with this disorder) truly feel every single day, especially on the bad days! I just keep optimistic and hope it will just get better and better, so one day I can look at those people and say, "you know what, there's nothing I can't do" lol... got my fingers and toes crossed anyway!

Potsgirl93, It's strange that those of us who have had this haven't really been able to find a cause (although, I suppose given the nature of POTS and not knowing ITS cause, maybe that's not all that surprising! ) Mine seems to be pretty intermittent...I won't have the flank pain for a few days and then, out of nowhere it's back. That being said, it's really hard to figure out anything that might be triggering it and so far nothing seems to stick out in my mind that would be causing it. It is interesting though to find people who have the same issue, though I'm sorry to hear you have this pain too!

Thanks Dakota and Issie! I think since I have gotten a lot of great suggestions / info on here from other people's experiences, that I will print this stuff out and take it to the doctor during pre-op stuff if I end up having to do the surgery. That way they can see what has helped other people with this and we can be completely prepared!

I just flew to Columbus Ohio in May (I'm in northern Cali) and I was a little nervous about the trip. It was my first flight since the POTS. Definitely hydrate and salty snacks are a very good idea. I don't typically have to urinate any more often than I used to, so that wasn't an issue. The thing that helped the most was that I wore thigh high compression stalkings...I don't know if it would have gone nearly as well if I didn't have those. In fact, I noticed such a difference in them just standing that I wore them all weekend (we were going to a concert festival) and I had much fewer problems than usual! If you can't stand the thigh high, they do come in knee high, but the thigh ones work best. I still experienced a bit of nausea and blood pooling in the feet and legs, but honestly, it wasn't anything I couldn't live with and I chalk that up to having the TED Hose. Good luck! Hope all goes well for you! (I will be flying out to Florida in November and I will DEFINITELY be bringing the compression stockings!)

I'm sorry they are not being more helpful / supportive. One of the things that most frustrates me about this disorder and a lot of the stories on here is the lack of help many receive from their doctors! I wonder if you might be able to find a cardiologist willing to see you without a referral? Other than that, I'm really not sure about what kinds of hr monitors that are out there that could also download their info to your computer. Honestly, in this day and age it seems like there is just about everything imaginable, so I wouldn't be surprised if there is something like that. If I have some spare time, I will try to do a little research on the subject

Thanks Sandy, I can see how a surgery alone could be really hard on someone with POTS, depending on what they had to have done. I can't imagine having more than one diagnosis and I'm sorry to hear things have been so tough for you! I am trying my best to steer clear of having to do the operation, but if worst comes to worst, I am fortunate that I am close friends with both the surgeon and the assisting PA who would be doing it and they have known me through the entire illness /disorder so they at least know my issues and to keep a very close eye on things!

Maia, it sounds like you lucked out too not getting the ablation, and I am so thankful that I found a Dr who could give me answers as quickly as I did, especially after reading some of the stories on here! GingerA, I am so sorry to hear what you have gone through, and I find it so crazy that more doctors and people in the medical field are completely unaware of this life altering disorder! I honestly wonder what can be done to raise more awareness so that things like your situation do not happen needlessly because of doctors having a severe lack of information when it comes to POTS and other related issues. I have two close friends (one is an orthopedic surgeon & the other a PA) and it was truly surprising that I looked in their most current medical journal and it didn't even MENTION POTS or dysautonomia! My nurse practitioner that I see on a regular basis had never heard of it before me but I was happy to hear her say that at her last conference, she actually mentioned it to the other attendees Maybe, slowly, with more Drs like her the medical field might at least start moving in the right direction when it comes to POTS!

Thank you both for your answers! It seems like this is something that can go either way I guess I will just see whether or not I need to have the surgery and then...we'll see what happens! I guess I won't really know till I try!

When I first developed POTS (& before I was diagnosed or was put on beta blockers) my resting heart rate was anywhere from 80-110. When I got up normally it would go anywhere from 130s to 170s and it would always be about 160-190s in the shower. My doctors put me on a halter monitor for 48 hrs and once they saw the results they were sure I had an extra electrical pathway in my heart & thought I would have to do an ablation procedure to correct the problem. Fortunately the specialist I went to see was able to diagnose me with POTS since ablation in POTS patients is actually a very bad idea! Once I was diagnosed and put on the beta blockers, everything got a lot better. It depends on the day, but resting I now tend to be in the 70s and standing up I stay between 80s and 140s depending on what I'm doing and how long I have been standing etc. I can also now take a shower and stay in the 120s to 140slo and I no longer have to have a chair in there!

It's interesting you bring this up. A few months back (maybe around the time I got sick with POTS) I noticed that my nails had started to develop a very noticeable horizontal dip across them, most prevalent in my thumb and pointer fingers. I remember looking it up online because it struck me as odd but I never really found any answers. Then I stopped thinking about it and it wasn't until I read your post that I recalled this being an issue. Now they are pretty normal again, and I wonder if its because I have been taking a lot of vitamins and supplements including a lot of iron to help with the anemia.

Have you looked into wearing a halter monitor? Before I was diagnosed with POTS I was having a lot of Tachycardia and the cardiologist put me on one for 48 hours. Basically you can do everything with it except get it wet. It records everything like on an ekg and then you can press a button when you have any symptoms and then the tech reading it can pay particular attention to your heart rate at that time. At the end of 48 hours you turn it back in and they print it up and write a report on it. I still have copies of mine, but the best thing was that it showed the Drs that there really was something very wrong and then I went to a specialist at Stanford who diagnosed me with the POTS. Hope this helps!

I actually have the blessing of working from home, so fortunately, I am able to work. (My husband and I run our own construction / pest control company and I do the office portion of that, plus I am also a writer.) I used to work at the local hospital as a phlebotomist, and if I was still doing that, there would be no way I could still be working. Anything early in the morning is out of the picture for me, as is anything strenuous or where I would have to stand for a long period of time. I have good days and bad, though since I've been on beta blockers, I have had a much easier time of living my life somewhat normally. Unless it's a bad day, or incredibly hot out, I can typically run errands and go shopping okay. I tried to get back into kickboxing, but that was too much for me right now. Yoga, however wasn't too bad most of the time (until it got too hot for the summer, since they have no air conditioning in the building I go to). Just recently I have started doing some mountain biking on very even terrain for short periods of time, and that has been going really well! In fact, I feel like if anything it's helping, especially with blood circulation in the legs. (Doctor says I still have to stay off motorcycles though )

Hello, I have recently found out that I might have to have knee surgery, and I have been wondering about going under with anesthesia and how the POTS might affect that (or vice versa). I am currently doing physical therapy to try and not have to do the operation, so I will find out one way or the other November 1st. I know I have read that it is best to steer clear of any sort of surgeries etc. when you have this disorder, but I thought I would see if anyone on here has had direct experience with this? Thanks everyone!

Lovebug, sorry it's been a few days. I had a really bad couple of days and then a good couple of days (which I took advantage of and didn't want to be on the computer!) Anyway, thanks for your input. It's interesting that you have the same two fingers mostly affected as I do, even though your symptoms are a little different. I've been thinking that it might have something to do with poor circulation. Just today I was crouched down and the position my arm was in must have been cutting off blood flow because my hand was asleep...and oddly enough until it "woke up" and the blood went back into it properly I couldn't move it at all. So, it would make sense, since a lot of POTS has to do with lack of blood flow and circulation to the proper places and the right time. I think humor is the best way to get through tough situations, because maybe you can't change what happens in life, but you can certainly have control over your attitude Prior to this, I was working in a hospital, first as a CNA then as a phlebotomist for 3 years, and I have seen an awful lot of really sick people who were the most amazing, positive people I have ever met. If there's one thing I took from that, it's that things sure are easier with an optimistic outlook...of course I have my dark moments, but I try to remember that nothing is permanent and the sun will come through those clouds soon enough!

Hmmm, definitely an interesting question, and reading through I had no idea about some of the nationalities that might not be at such high risk as others. I am 26, American Caucasian female, with mostly German, some Hispanic and a lot of other stuff thrown in as well.

Naomi, don't feel bad because it seems we all have issues with this! I had never felt so spacey in my life until getting POTS, and now sometimes I really have to wonder what's going to happen when I'm older! (I am 26 now.) Maybe the opposite will happen and my memory will get BETTER with age, haha. The worst for me is keeping my mind on what I'm doing, since concentration seems to be difficult to manage most days. Also, the word-recall problems, where my husband constantly has to fill in the blanks because I forget what word I am trying to say, LOL. Actually, not so shining moment for me happened just recently. I came in the house as always, hung my keys up, and went to sit on the couch, talking to my husband the whole time. Then, a bit later he had to get up and go write something on the calendar that is in the hall, right by the key hook and light switch. As I watched him, I suddenly noticed there was something strange hanging on the light switch, and low and behold, apparently I had hung my keys there instead of the hook! I don't even know how I managed to do it without them falling off, let alone not even realize I had done so! Of course we had a great laugh about it, which is about all you can do sometimes or else you'll drive yourself crazy. We just try to look at it as some great inside joke material and I try not to be too hard on myself! Hang in there...hopefully things will get better for you...and for us all

Kayjay, I have actually had one 24 hr urine test back when they thought I might have adrenal tumors or pheo...it didn't show any particularly strange level of metanephrines or anything, but I do feel like I get weird surges of anxiety or adrenaline sometimes, so who knows? MomtoGiuliana, I have been trying to be better about drinking enough water, though I know I still don't drink enough (my husband is always handing me a cup full of water or gatorade and saying "drink!" lol). I have been trying particularly hard to stay hydrated the past couple of days, plus not waiting too long too urinate, and it seems like I haven't had nearly as much pain (actually none at all today) as I was before. I am thinking the MRI would have probably shown anything too serious, so perhaps unless it gets bad again, I will wait and just bring it up with the Doc if it is still going on when I see her in a few weeks. houswoea, it's interesting you bring up the digestive problems being connected somehow, because if there is one thing I have experienced because of the POTS, it is digestive issues. Not to gross anyone out (though I'm sure anyone on here is waaaaayyyy beyond grossing out by now! lol) but I have had diarrhea pretty much a good 70 to 80% of the time ever since my autonomic nervous system ended up going haywire. I will definitely be keeping it in mind... in fact, everyone on here has such great suggestions that I have decided I am going to try and keep a daily journal of my symptoms, etc. and see if it starts to match up with some of the issues others have had. It is interesting to note that since I haven't been having digestive issues for a couple days, the pain has been much better, if not gone most of the time. Of course, as I was saying above to MomtoGiuliana, I also have been staying hydrated, etc. so it could be that... geez, with POTS it's so hard to tell sometimes! Lovebug, thanks for the response, it sounds like you have been through a circus of tests like the rest of us! I have not been to the Gyno, although my annual is coming up this month, so I guess it's perfect timing, right? I will definitely be mentioning it to him when I go. Hopefully I will either get to the bottom of it, or it will go away! (In fact, I wouldn't be heartbroken if the POTS just went away too hehehe!) Oh, and, as a side note...I was wondering if anyone else on here has had any trouble with their hands? Sometimes both are affected, but mostly I have issues with the left one. It's usually if I get too cold, or if I have one of those adrenaline rushes, or...um, after spending some "one on one time" with the hubby (which by the way POTS is sooo not awesome for the romance department!). But anyway, it's like my muscles freeze up or clench up and I'm not able to move my fingers, especially my ring and pinky fingers. I have to concentrate really, really hard to make the muscles relax, and then I can move my fingers again, but only with really jerky movements and a lot of concentration. The first time it happened was before my diagnosis of POTS and it really freaked me out. I went to the Prompt Care and the Dr just said it was anxiety and put me on Adivan (which did nothing for me). I have mentioned it to the other Drs I have seen, but no one seems to know why it happens, but I haven't really had anyone look into it either. It is just a very bizarre thing and I was curious to know if anyone else has this too? I didn't want to open up another discussion and hog the forum, so I thought I'd just ask here Thank you so much everyone for your responses...you are all so helpful, especially since I am relatively new to this whole "wonderful" (that was sarcasm) experience of POTS! Take care all!