lieze

I have difficulty with this too. Pre POTS I abused my body. Ran on adrenaline all the time. It seemed I was always hyper. Went without eating a lot. I was up at 5 for work and could not eat that early so drank a large glass of chocolate milk then didn't get a lunch break til noon. I hated it believe me but it was my schedule and there wasn't much way around it. No wonder I got sick is what I think now. I think my body finally rebelled and said enough of this! Now though that hyper feeling has about quadrupled whereas before I would literally walk fast all over the building trying to run it off I guess. Now it is debilitating. Interesting huh? So what I seem to be finding is if I can stay calm and pace myself I feel good. If I let myself get carried away my heart starts flipping round I go into somewhat of an anxiety attack but honestly it seems situational as soon as I start calming down so do the symptoms. So my goal is if I can stay calm then I won't send myself into the red zone if you want to call it that. My heart rate has came down a bunch in the last year. Maybe due to my ablation? When they did it the fellow told me when he was getting ready to discharge me said he would look for my heart rate to start coming down within a couple months. At that point I was laying in bed and resting pulse was 90. My heart rate seems to range now between 68-90? It was scary when it first started coming down after beating so fast it felt like it was totally stopping. I do have my prn xanax I can take if I just can't get myself under control but I avoid taking it due to the addiction potential. The fluorescent lights at work and at places like Walmart do bother me I get dizzy. Feel like everything is spinning. And I just have to slow my pace or stop and wait sometimes before I take another step. I don''t get near as much accomplished either and just have to accept this and try to work at things a little bit at a time so they don't become overwhelming when possible. lieze

I tried to get out today after spending the last three-four days in the house. I had a lot of anxiety driving and had to try to keep from hyperventilating. As I got out of the car to enter the first building it felt awkward to walk I felt like I had sea legs. I don't know why I do this. I really think I need to get out more often almost daily so I don't have so much anxiety. Did a few things around the house and I'm so proud of the little bit I get done. lieze

Just read all your food labels. It is in almost all Campbells soups except for one of those healthy lines they have. I stood there in the Campbells aisle for 20 minutes trying to find a cream of mushroom free of MSG the good new was I did. It's also in a lot of chips. I just read all labels now because I seem to not tolerate it at all. I am afraid to eat Chinese food too unless they advertise no MSG! I honestly didn't realize how much it is used until now. lieze

I've noticed my nailbeds turn blue in hot water. I had never noticed this before. lieze

I've noticed sensitivity to MSG this past year. It just gives me an awful headache that makes me think I"m ready to drop. I almost had some ramen the other day but noticed the very first ingredient listed was MSG. If anyone knows a brand that doesn't have them I'd be interested. lieze

I know what you mean I've spent so much time on the internet only due to being stuck at home that when I've been out in public around real people I had the urge to go up and touch them to make sure they were real. I'll be looking forward to hearing from you! lieze

I am not too far from, in the same state at least and I'd love to be a friend! I'm 43. I have four kids though and still have a 3 year old and my 5 year old is still at home. They do not let me talk on the phone at all! They get jealous. If you would ever want to send a pm for now or email that way I can get back to you as time allows. And then in the future I might have more time to talk on the phone at least that's what I keep telling myself. I also had the feeling my hormones were messed up especially because my periods were changing right at the time of all of my other symptoms. First my periods went to every two weeks which of course made my anemia worse and made me weaker and more emotional. Then they went back to every four then they went to every three. I went to get checked out and thank goodness everything was normal. They said my uterus seemed a bit large but after four kids does it ever really go back to normal? They did an ultrasound though and every thing looked good they said I did not want a hysterectomy and that they would look at different options for me. I put it off and I'm supposed to be checking in with them to see how much of a problem my bleeding is-sorry guys! I haven't really done that figure it's something I most likely have to live with. I know my mom's periods were awful and she lived through it when she was going through perimenopause. My hormones came back normal too and I actually think all other lab work including Hgb was normal on that lab test. But they said that they could be fluctuating on a daily basis there was no way to tell that by the tests they had done. But hey pm me and I'm willing to listen and if the future I might even be able to talk on the phone. lieze

Wow thanks for this. If it continues or gets worse I'd be willing to try something. It almost seems like it's happening less often and it is a bit uncomfortable when it happens but usually passes. I also do feel it in different places all the way up into my throat.

I'm wondering too if it is more of an anxiety thing. That can give the sensation of tightening up and another anxiety patient says she does the breathing thing too. I'm still trying to sort out what is POTS what is anxiety. I keep telling myself there should be nothing "wrong" with my lungs. I had two chest xrays this past year that showed no type of active disease. I don't smoke. And have been really healthy except for just getting these viruses and dealing with the after affects of them. Thank you though to everyone who read this and Chaos for responding. I'm not sure what is triggering it. It seems to just come out of the blue. I haven't made a connection to anything else yet. lieze

Anybody else? I can't be sure this is happening but all of a sudden my breathing gets difficult and I almost have to breathe mechanically til it stops. Could this be a spasm of my diaphragm-just had one but it didn't last long at all. Also I get this sensation that the spasm moves up to other areas at times. Sometimes even in my throat and I just have to wait for it to pass.

I had read Paxil helped with POTS symptoms and asked my gp about it. She did write me a script but then when I read the side effects it scared me. I went back to her and asked about Effexor-it seemed to be one of the SSRI's SNRI's that raised bp instead of lowering it. She basically told me in POTS patients it doesn't do that to try it and if I had trouble with it she would switch me over. Well I never could get my nerve up to try it but wanted to ask if anyone else did and if it helped them. She said she had actually done her thesis on this subject and with all her research no one understood in what way it helped with POTS only seemed to help. Any advice on this? lieze

The only thing I can offer is that my heart rate and blood pressure have seemed to improve but I still get symptoms. I can go take my heart rate and blood pressure while I'm feeling crappy and they look normal most of the time. So I can't explain it. I tell myself it's just a feeling I'm getting but it still really scares me at times. I'm interested to see what response you get here. lieze

Well I'm struggling a bit here trying to stay active. I set the timer for an hour yesterday to try to stay up and doing and it was a bit uncomfortable. First feeling pain in the back lower legs, and all kinds of other sensations. I made it for the hour but don't know that I'll do that again. I do so much better for 20 minutes and then resting then doing another 20. And last night I had to get up to get the kids a snack and I was so dizzy. Oh my the room was spinning. So out today and it was hard to walk to the building I was going into again dizziness and I either stop walking and hesitate-that helps or I tighten up my muscles. Then in to a grocery to pick up a few things I needed after that trip. So dizzy walking into the store I had to keep saying to my self feel your feet feel your feet how grounded they are with every step. I do so much better when I can hold on and push the cart it's just a feeling that it seems to steady me. But then a couple times in the store I just felt like I could just go down but somehow I keep going it all feels like sensations that I wish would just stop. I will keep doing the getting up and resting all night long and I guess keep trying to focus on what I can do. I love it when I just get distracted and forget about it all. That's when I feel the best. These feelings come and go for me especially the dizziness. I have nice periods where I don't feel it for several days so maybe I'll get another break soon. I can hope for that. lieze

I read it can take 2-5 years for post viral POTS to recover on the internet. That seems like a long time when I read that my heart sank but I guess the good thing is recovery is possible. I think the most important part is to not give up hope and keep continuing to exercise whatever that is for you. Every where I read it emphasizes the importance of reconditioning the body. For some it maybe just sitting up or moving your arms and legs while laying down and for others I see they are actually able to do aerobics? or go to the gym. I'm not on that level yet but I can see how very important activity is. lieze

Well confession here I have been rather lazy here for the last 24 hours. Here it is almost 3 pm Monday and all I have accomplished is a sink full of dishes and getting snacks here and there for the kids no real meal yet. I just took my bath and did a cool down before I got out, I find myself being so paranoid about everything. I feel a lot of discomfort in my chest today I think it is gas but it sits right there almost on top of my heart just hanging out not going any where. I have got to get moving here. I almost need someone to light a firecracker under my butt because it's so easy to prefer sitting still and feeling great than getting up and what that will bring. Hopefully I can post a productive report later so far I'm in couch potato territory. I have told myself I have got to get out of that bed and at least be upright on the couch. Even that is good exercise for my POTS body if I understand this correctly. lieze

I worked an 8 hour shift on Saturday. I was scared out of my wits. I thought this is it my body is going to cave and they are going to tell me I am done here. My whole career flashed before my eyes I thought it was over. My anxiety was so high so I took a 1/2 a Xanax. I was only scheduled a 6 hour shift but there was a call in so I got pulled to be her replacement. I made it but I forced myself to pace myself. I started feeling the fatigue about 6 hours into it but made it. Again today the same thing happened. I had an ocular migraine last night and my right eye dilated. I had difficulty going to sleep worried about today. So same thing happened another person called in today and I got pulled. Today I spoke up and said I won't be staying for the whole eight hours I will leave when I am scheduled and they were fine with that. I think it's just great that I made it. I know years ago I wouldn't have thought twice about that but I am somewhat deconditioned and I was worried I was going to have some problems. I took a nap both days and that really helped. Was not able to do much with my family or around the house because just those work hours sapped my energy. I am not scheduled to work again for two weeks so I made it through another one, that's good enough for now!

I just think it probably has to due with the oxygen concentration in the blood dropping because talking interrupts your normal breathing pattern. I have noticed this some and found that if I slow down a bit with my talking it helps some. I don't notice it all the time. lieze

I've noticed that my urine has been pretty dark and concentrated these past couple mornings too. I am probably not drinking enough either. I think the more I drink though the fuller I feel and the less I eat so it's just a constant battle. Good luck getting this worked out it's good that you notice things like that. lieze

My doctor says it just so happens that this is what she did her thesis on, but she said with all the research she did she cannot find how they help-they just seem to. Now I did wonder about the snri since our norephinephrine is already sky high but I read that it does not reach the brain so maybe it's okay. I was interested in Effexor because it seems one of the side effects can be a higher bp and this would benefit me I think. I am so ready to try this Paxil. It's right here in the drawer beside me and I am such a big chicken. lieze

Wow I think I have this too cause they wanted to scan me for a pheo. I am so afraid of meds too but am so tempted to try the Paxil because I'm questioning if some of my symptoms I"m getting now aren't more anxiety related. I think I may even be having panic attacks. Thanks so much for sharing your story and I'm glad you are feeling better. lieze

I'm impressed with all the wisdom and experience here and want to ask for advice? My first POTS symptoms came right after chicken pox. I have never been officially diagnosed with POTS. I was still able to work for a while. Had good days and bad, with what were then intense feelings that would come over me like I was going to pass out or irregular heart beat, got into the SVT's etc etc. Had the cardiac ablation in July and that took care of my SVT's I don't have any more of those. The procedure of the ablation took me down another notch and I was very weak, had difficulty eating, was experiencing reactive hypoglycemia, and POTS episodes that have since somewhat improved. So now I am at a point where I work every other weekend, stay home and take care of my kids, and am able to have many rest breaks, however I wonder if I am resting too much. I had recently not even noticed the drops in blood pressure that I was getting. I seem to be improving overall without any treatment besides rest, extra fluids, etc etc. Well yesterday I went to Walmart and I won't lie on a good day it is a struggle but what I notice usually is just heartburn and my stomach starts to grumble and sometimes I get breathless and have to pace my breathing. Well yesterday's trip was different. Part way through the store I felt like I wasn't getting any air at all. I headed to the front but symptoms weren't letting up. I caved and told one of the people standing in line, "I'm sorry but I feel like I'm going to pass out." They told the clerk and she paged the manager who came and told me to sit on the floor. The kind customer gave me a water out of her cart that she had just paid for and this does sometimes help me to drink something cold. I sat there for about 5-10 minutes okay but just feeling like I could not get up. Then finally when I felt I could I got up symptom free and moved to a bench so I wasn't sitting there on the floor. While sitting on the floor this wave came through me that made me want to just start crying uncontrollably but I didn't. It made me wonder if this was a panic attack. I went in the bathroom and I felt like I needed to be holding onto something to walk but made it fine no symptoms. I washed my hands and took 1/2 Xanax. I then felt strong enough to make it back to the salon where my son was to get his haircut. Yes my poor 8 year old was with me I felt bad for him. Walked to there felt fine. He got his haircut and we paid for the few items we got and I made it home no problem. I could not even feel the Xanax at all it's like my anxiety level was so high it didn't even touch it. I got through the evening just fine. Felt just slightly lightheaded the one time I got up. I also have a better feeling have been able to eat, I feel stronger not the weakness I had before that made it so awful when these episodes came making me think I was just a goner. But this morning after my bath same problem. It was a hot bath. When I got out I felt my heart start to pound then pause, totally stop for a moment and then go into a funky pattern. i went to my bed and laid down and took my vitals. Bp and pulse both up at this time. Rested for just a bit and it gradually returned to normal. Tried to do a standing but my body was still warm from the bath and my pulse soared up to 139 bp 95/72. Since I've cooled off now and BP usually runs in the 90/60 range but heart rate has come back to normal. I actually worked an 8 hour shift Saturday evening totally asymptomatic. So all of this is kind of surprising me. I do relax maybe too much, like that trip to Walmart was the first I was really up and around yesterday and that was at 4 pm. I wonder if I need to practice being up more so my body can adjust maybe I am taking it too easy. I usually keep going even though I get strange sensations either in my head or the indigestion I feel and I do burp tons. And I do just fine. I'm a bit afraid to try to go anywhere today I'd like to see how I do around here. And I was so tempted to try the Paxil my doctor gave me I almost wondered if I had a panic attack in the store yesterday since I got that horrible urge to cry it made no sense I really didn't feel that bad. I would like help with this if you can help me sort it out. I do feel lucky that I am as functional as I am. Last July I couldn't even walk across the living room floor without feeling like I was going down. And stairs still scare me. Thank you for everyone that takes the time to get through all that. lieze

I take flinstones chewable with iron and I did this on my own and I know it sounds a bit silly but......I am one that is overly cautious half afraid of pills. I seem to be very med sensitive and I've also had difficulty taking some forms of iron even though I'm anemic. They have been really hard on my stomach and I have actually gotten black watery stool that ran right out of me from too much iron. The form of iron in the flinstones doesn't do that and slowed everything down for me rather than causing the stomach irritation. I have not had any repeat hemoglobin or iron levels so I'm not sure if this is effective in relieving my anemia or not. I have had difficulty with the anemia since my last child but I wasn't faithful with taking a vitamin when these low levels were found. Also my periods come every 3 weeks and are heavy so that's my source of blood loss. My b12 level and folic acid level were tested and found to be normal. I have also responded to iron therapy and was able to bring it back up in normal range after Hgb being around 8 during that 4th pregnancy. I tried taking my one a day woman's vitamin the other day and I felt as if I'd keel over about a half hour after taking it. I got a raging case of nausea and woozies in the head. I only weight about 100 pounds so maybe the flinstones is enough for me-I don't know?? I definitely think it's better than nothing.

Wow this is amazing. I wonder if there is a way to try to help this process along naturally? I went to Cleveland Clinic and one of the only tests they ran on me that came back that was abnormal was my amino acid gap. It was like half of what it was supposed to be. I try to take a multivitamin and vit c everyday but right now that's all I take. I'm supposed to see an endocrinologist back at Cleveland Clinic just haven't received the appointment time yet in the mail. I want to ask about this too I seem to have the hyperadrenergic type too, developed mine after chicken pox. I am partially functional my biggest complaint at this point is my vision and funny feelings I get in my head? And when I get tired it doesn't feel like tired used to feel I feel like I"m fading. I'm interested in this testing and think I probably have the same issues I just don't know if the body can work it out on it's own over time? lieze

Thanks Maxine, yes if it didn't let up I was going to call I'm here with 2 little ones so it's just a bad situation no one to call for me if I do go down I hate that on the verge feeling with no one around It would probably be good to just have a person to call and if you become unresponsive then they could call for you -it's hard to face that reality though it's like accepting a fate lieze

Thanks Kelli, I just needed to hear one person say that. Was just doing dishes at the sink and started to feel it again along with a little tingly in the head. My bp is 117/68 a little high for me but i haven't taken it in a while. And pulse 93 which could have just been from the activity. My gut is that I'm going to be okay. Still feeling this gas too I think it's got me aggravated. Often when I've been symptomatic my vitals look perfectly normal and I end up being just fine. I'll try not to worry. lieze