lloppyllama

Hello, Rachel and Flop, I appreciate all of your feedback so much! I deffinetly think your right when you say there is a difference between naping and just lying in bed all day. Today I went with my mom to go shopping for some new compresion stockings and legging-ish things. I also got some cooler clothes for these hot days. After just one store I was beat and really needed a wheel chair, but the stores didnt have any so I slowly made my way through the stores sitting down about every 30 seconds, it was quite a drag. But hopefully now wiht my new stuff I will be able to bare the hot days easier! I think I'm going to try elevating the head of my bead and see if that makes any difference. I also am going to check out those vitamens you mentioned because my doc. has me on a multi-vitamen for my vitamen-D defficiency, and if it has the required amounts I will try it! I am also going to start a food diary so that I can hopefully find what foods are bad for me. Flop, I deffinetly didnt find all of your help like you were just preaching to me, it was very helpful and I really appreciate it. I have found that many times I will try and do much much more that my body can handle, and I totally end up paying for it. Thanks so much for your feedback! Have a great Memorial Day! Mary

Good Morning Erica! I am sorry to hear your feeling so icky, for me sugars dont affect me too much unless I eat a lot of it, but for me small portions are fine, which is good since I LOVE sugar! haha but I am also a teenager and we tend to like sweeter foods than adults. The sleepiness may just be from the "sugar high" but it also could be from the pots. I think that how much of certain foods we all can handle is going to depend on the person, however there are some people here who can not tolerate sugars well. Pickles are a great thing to eat for us pots folks. My nurse who deals with my treatment plan said that some people actually take the juice from the pickles and make it into popsickles! I know it sounds discusting but apparently it is good, I have yet to try it though. Hope your feeling better! Mary

Hey Ernie, Now that I wont be in school anymore I think that I will start to try and do just that, get 12 hours of sleep each night. I sure hope it will help, I think it will too! Thanks, have a great evening! ~Mary

Hello everyone, Thank you for all the help, I read through the info on the "what to avoid section" as well, thanks Nina. I think I have a much better understanding now of what things are going to possibly set off my symptoms. Tammy, thanks for suggesting the food diary, I think that is a wonderful idea, and am going to start one! I hope you all have a lovely evening! ~Mary

Hi Erica, I have alot of concentration and "brain fog" issues too, I think that I will try reading, because I have alot of books I have been wanting to read, but I just didnt think that I would be able to remeber what is going on. But I think it is deffinetly worth a shot! Becuase I loved reading before I got sick, and hopefully I will find that I still can read and comprehend it. Like you said its so great to have this network of people that can share knowledge and stories, it has deffinetly helped me, and I too am new here. But its great to have people who understand because dealing with so many people who dont understand why your always missing school, or when your there your always "out of it" and so on, it really helps to know there are others going through the exact same things! Have a wonderful day! ~Mary

I have noticed that after I eat my stomach will hurt, and this is probably being caused from the blood pooling from the digestion process. But are there any foods that anyone has found are easier on the stomach than others? Or the opposite, being foods that you would want to avoid. Any info you have would be a great help, because I would sure love to get rid of this nausea. Also does wearing compression stockings that go around the abdomine help with the blood pooling problmes?? Thanks, ~Mary

I think that sounds like a good idea, because as long as I dont stay in bed all day my body shouldnt lose alot of like muscle mass and all. Plus if I use a pillow that props me up my body is the somewhat of an upright position anyway. My doctors said I can have chocolate in small portions... haha because they really like chocolate too and they think that is just way to mean to take it away! haha and I agree. Thanks for the reply! ~Mary

Since my heartrate is already so rapid, my doctors dont allow me to have caffene (as I'm sure yours dont either) They also dont want me to be napping during the day, as that is decondition my body more, and get it even worse at adapting to the upright position. So I was just wondering if anyone has any ways to get energy when we already are so wiped out. These past few day ( I am thinking from the warmer weather) my symptoms have been alot worse but I also have been significantly more tired, and i am having trouble doing even the smallest daily activities. Any help you have to offer would be wonderful! Thanks, Mary

Hello! I am dizzy and lightheaded for most of the day, it seems to help when I lay down, but my doctors dont want me lying down during the day...which is really hard......but even right now just sitting down i am quite dizzy as well as the lightheadedness. However I dont know if there is much that can be helped other than the extra fluids and salt . But hang in there, hopefully things will be better soon!! For the left side numbness, I dont have it on the left side mine is on the right, usually it will just be my arm and hand (hand tremors too) but my leg will randomly go knumb too. My doctors told me as well that it was just from the pots. Have a great day! ~Mary

Hello and Welcome! I am new here too and have found this site to be a HUGE help with just getting through the day, it helps me to not feel so alone. I am sorry that I dont have any help for you with the toprol, however I do experience the migraines so I feel your pain! Good luck with your job, I hope it works out smoothly for you!! Once again welcome, and have a wonderful day!! ~Mary

Jessica, I am like the exact same way you are for when the yuckier yucky happens and it is strange because my periods are normal, it just must be that at that time the hormones are fluctuating (sp??) and it messes with our goofy bodies. Jennifer, I do have migraines, pretty much daily some days are alot worse than others though, why cant you take bc if you have migraines????

Thank you to everyone who replied, it has been a HUGE help!!!! ~Mary

hello, I think i will do that, talk to my PCP about it and see what she thinks, because i would most certainly love to not feel so crappy for a week like usual. Mary

Unfortunately nobody was there to see what happened, but I think i will let my doctor know, and hopefully it was nothing to be worried about and like you said doesnt happen again. Plus i am on nortryptyline(sp?) which is an anti-epilepsy drug which i would think would then probably make me not get seizures, but i guess you never know, thanks for the help! Mary

We have a 3 month break, so that is quite a bit longer than in the UK.

Hi Pat, I deffinetly experience your same problem, and that is what makes it so hard for me to get up out of bed every morning!!! What my doctors are having me do right now is i wake up 30 minutes before i am actually going to get up and I drink at leaste 8 oz. of salty fluid (gatorade, chicken broth...) I also take my BB at that time. Then after laying there for 30 minutes I get up and do some "big muscle" excercises to get my blood flowing better (squats, calf raises, arm curls with 5 lbs.) I dont know if you are on any type of schedule like that already or not, but I think that it helps me to get going better every morning! Have a great day! ~Mary

I have deffinetly noticed that when my time of the month comes around I get significantly worse. I just feel awful, and cant seem to make it any better. I read through some previous discussions on BC and got alot of good information, but i was just wondering if you think that it would be a good idea for me to try them or not? Also i saw on the news there is some new med. that completely stops your period all together. Does anyone have any info on that?? Have a great day! ~Mary

Last night as i was laying in bed watching the TV about 3 times i stated shaking and couldnt control it, im not really sure it was a seizure or not....it didnt last for very long but I also dont know how to classify whether or not it is one. Any help i could get would be great! thanks!! ~Mary

I experience the same thing, when i carry stuff i get dizzy but then walking makes me tired, and in turn when i get really tired then i get even worse...so there really is no good answer, i think for the last 4 days or so there are of school i will probably just continue on how i have been, but next year i will have to look into something else if my symptoms continue to be a problem. And i think your right Pat it will be a long summer, hopefully it will be better stress wise once school is out for me an then maybe i will do a little better, but if the weather gets real warm then i have a feeling that it might even be worse than it was during the school year, but i guess there isnt a whole lot that those of us with pots can do about that, we just have to adapt, . Thanks for all the help! ~Mary

Maxine, i am very sorry to hear your feeling so poorly, I am sorry that i dont have any info. for you, only prayers, hang in there!!! ~Mary

Thanks for all the help, i read through the previous conversations and they were very helpful. I think i will look for some long skirts, and soon school will be out and i wont have nearly as much trouble,(since im sure you all know how judgemental high schoolers can be!- but i try not to let it get the best of me, because feeling healthy and being able to function is all that actually matters) plus the school isnt air-conditioned so that can be quite tricky, and then having to walk back and forth to classes adds a whole new tiredness......hey do you guys think that carying my backpack with my books would be easier than go back and forth?........thanks again! ~mary

I was just wondering if the higher temps. have been affecting anybody else, for me i live in MN so its not going to be as bad as farther south, however when it gets over 70 for me its been alot harder . i also wear compression stockings and then i dont wear shorts or caprees....what do those of you who wear the stockings do during the warmer days? Also if you have any tips for how to deal with the warmer weather i would love to hear from you! thanks a bunch! ~mary

After i excercise i can get very lightheaded and dizzy, it really depends on how i am doing that day though. I have noticed that my legs have that "excercise feeling" for a long while after excercising. I dont have any information on why it happens though, sorry, best of luck to you!!!

I have had contrast multiple times and I dont believe it made me worse (or at leaste not drastically, but my memory has gotten kinda goofy from the POTS so it may have and i just dont remeber) but I think that perhaps it was just a coincidence and you just got worse that afternoon, and it maybe wasnt from the contrast. hope your feeling better now! have a great day, ~Mary

hey, thank you all for replying i really appreciate it, i am feeling very welcome and happy to be here, its so wonderful to have other people to talk to about all the crazy stuff going on with our bodies. thanks for the advice pat, i think that should work well, hope you all have a wonderful day ~mary