mountain girl

I changed jobs in March 2008 and had such anxiety that I went back to my old job, but had to work night shift because no other shift was open. I started night shift in June 2008 and that is when my symptoms started and became more severe by August. I stopped night shift and was put on days and evenings but of course the symptoms continued. I also had 3 sinus infections from Dec. to April, but I had them in the past, so I was inclined to think the "trauma" to my system was night shift and not sleeping well. My symptoms were tachycardia, anxiety and chest heaviness and of course extreme fatique.

When I first started drinking gatorade I did not really like it but I like the grape flavor best (they call it fierce on the bottle). I know what you mean about the weight gain though, because I used to drink only water, and just try to eat healthy, but I gained about ten pounds in the past year since being diagnosed. I am trying to alternate one gatorade then one water. When I tried all water I felt really dizzy by the second day. I had never heard of nunn but I may look for it or try online.

I do still drive, but I understand your feelings. We just recently moved so I could be closer to my job and continue working. I only feel comfortable driving around town short distances. I would like to think I could do more, but driving longer distances or in an unknown area I think causes a certain amount of anxiety which could cause increase in heart rate for us with pots, so I say do only what you feel comfortable with.

I generally feel my best during the day similar to one of the others who responded and said 10 a.m until 5 p.m. Of course this can vary depended on what I am doing but as the day goes on I tend to feel more tired and need to lay down for a rest and like to get in bed early between 7-8 p.m. I generally sleep pretty well but I do take a sleeping med .

1. I was told by my dr. pots is not cureable and is a permanent condition. 2. I take 4 meds daily for pots. 3.I exercise in small amounts like several 10 min walks. 4. I am guessing 1000mg or more per day. I was drinking 64 ounces if Gatorade a day but am getting sick of it so have been focusing on high sodium foods like cottage cheese, canned tuna, and adding other fluids.

I do not feel well most days, but there are occassional days or hours where I will feel normal. At first it led to disappointment because I would think I was getting better, but now I am learning just to enjoy those times of feelling somewhat normal when I CAN. And like others of you made reference to sometimes I even think I can do more than I really can.I do manage to work but that consumes most of my energy for the day. I often have to spend my half hour break from work laying down in the car just to get thru the rest of my shift. My husband and daughters have lived with me enough to know that I am not just being lazy because I was always on the go before and enjoyed that, but sometimes it is hard not to feel like I am lazy. It is like my mind wants to do things but my body won't let me.

If it makes you feel any better, I think it is somewhat normal to feel needy and want someone around when you are not feeling good, yet I know it is not always possible. I think this website has been great company for me because it does help to know what we as POTS people often feel is experienced by others and they understand. I don't know if you have any pets, or even like animals, but I have a dog and a cat. The cat in particular has been a comfort for me becaused he likes to lay with me and comes to the bed or couch and just seems to know when I do not feel well. Cats are less care than our dog so that helps that he does not need to be walked. While it may not be realistic to hope for a cure soon it is realistic to hope to have better days so I hope that for you!

I have been on Florinef 0.1 mg daily each morning for about a year. I also take a beta blocker Bystolic 5 mg. daily and the Florinef seems to keep my bp from going so low that I was feeling bad. I have not noticed any change in my immune system response, but I was also concerned about that originally. Knock on wood, I have not been sick for at least a year except with the POTS anyway.

Thanks for the thought!

I cannot tolerate any alcohol since being diagnosed with POTS. The last time I drank was a shortly before I was diagnosed with POTS like about a month before and after a few wine coolers at a cookout I felt dizzy, and sick and needed to lay down, so now it is none at all for me.

This topic caught my attention because that is how I feel. I could relate to alot of the replies from others too. I am thankful that I am managing with the POTS, it's just that I never know from day to day how much I can tolerate and long to feel "normal" again. I have been diagnosed with POTS for about a year now, and I do work part time, but after work, I usually only have enough energy to bathe and lay down in bed. Thank goodness my job has some periods of sitting and some periods of standing or walking. Is this as good as it gets? Unfortunatly I think this "disease" seems to vary so much from person to person it is hard to say. Sometimes I am not sure if I am a little better over time or if I have learned my limitations better over time. I take a beta blocker Bystolic 2.5mg. daily and Florinef0.1mg. daily. Doctors have tried increasing the doseages on both of these but I do not notice that I feel any better on the higher dose and this seems to keep my heart rate in 60's to 70's most of the time. The tiredness for me sometimes goes away during the morning hours, but as the day goes on I feel exhausted. I especially liked the reply about hope for a cure or new meds that can help us POTS patients. The number of people who are joining dinet and repling to topics shows there are plenty of people like us with the same types of symptoms. If only there are doctors and or researchers who are really pooling info about this, which I don't know if there are. Thanks to the person who gave info about newer meds that are being developed and tried. I know it must be hard for you and it is also hard for me to think this may be as good as it gets, but I am trying to focus on the good days or even hours that I feel good rather than on getting "well". I find it less disappointing that way if that makes sense. I used to feel better for a few days and think I was getting well only to find that I just had a few good days. Yes, I feel discouraged sometimes, but having this website has really helped me and I hope it helps you too.

I can't say I really have anything specific, but I try to tell myself tomorrow is a new day and will hopefully be better. It also helps me to have this support group and know that others get sick and tired of dealing with having these chronic conditions too. I have also started rating how I feel each day on my calendar with 1 being the worst and 10 being the best, that way when I am having some bad days I can go back and remind myself that I have had some good days too. And yes, I understand that whenyou feel bad physically, it gets you down emotionally too. For me, I often feel pretty good early inthe day but if I have to work evening shift I get so tired I start to feel really tired and like I have to cry. I can relate to having a good cry because it feels like a stress release. I do not like to cry but holding it in takes more energy. Hang in there! I definitely try to focuson something else if I can like find a good t.v. show I like.

I am wondering if it is related to the pots because I also had chest discomfort laying down. It used to happen at the end of the day, but has also occurred in the a.m. for me. At least getting it checked out can reassure you if there is nothing else going on. I take Ativan as needed for the chest discomfort, and it helps me. My pots doctor did not order it, but when it was ordered by the er docs and it helped my family doc was willing to order it and I only use it once a day or less. My best to you. Hope you soon feel better.

very interesting poll. I had to choose other after my experience over the last few days. Prior to that I would have chosen fatique probably because that causes so many other symptoms to come on. However within 2 days I had 4 unpredictable tachycardia attacks where my pulse went to 156 or higher, and I felt like I could not breath and like I would pass out. I had not had any of these for 6 months or more since being on mediction we thought was controlling the pots. So I would say unpredictable attacks that feel almost like a seizure, because I also tremble uncontrollably.Does any one else have these when you are doing something as simple as going to the store or sitting in bed?

Are you newly diagnosed? I know when I was newly diagnosed, it seemed I had to "conserve" my energy just to work, and when at home I felt more comfortable laying down or reclining, so I know how frustrating it can be. I am on a beta blocker Bystolic which is fairly new and it mostly has kept my heart rate down, and I take Florinef which is supposed to help my body retain the fluid it needs for good blood flow and circulation and keep blood pressure from going to low. As for what may help you with being able to be up longer to attend things, I find I just have some days that are better than others as far as how I feel and how much I can tolerate. For me, they are just unpredictable, and that used to upset me, but now I just try to appreciate the good days. I hope you too have some good days. Since I don't have the neurpathy, I don't know how that affects your condition. I also drink 64 oz. of Gatorade a day for the sodium content to help keep my blood pressure up to normal.

I am so glad to have found this support system. I agree with most of you that pushing myself too much backfires and then I feel bad. I push myself to work at my job but usually work 25 to 35 hours a week. I also agree that pushing to do something fun within reason helps so I do not feel as depressed about having POTS. Someone wrote of wanting to just feel normal for a day or a few hours. I have been lucky enough to have some times where I feel normal for a few hours in a day, but it was interesting to read that someone else besides me thought of it that way as well, if only to feel normal again.