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for the past 3 weeks i’ve been exhausted no matter how much i sleep (sleeping for 8 hours, and still taking 6 hour naps), for the past week i’ve had a migraine and have been feeling very nauseous anytime i eat anything. my body is also very achy. i was diagnosed with gastroparesis in the spring and pots 2 years ago. i went to my pediatrician today and she thinks it’s a sinus infection. i’m just not sure what to do about the nausea from eating. i’m away at college and i have finals coming up soon, so i’m trying to feel better for them if anyone has any advice. thanks

hi. i have been doing well (give or take) for the past 6ish months. i’ve been working 9 hour shifts almost everyday in retail and even with being on my feet that long i was doing well. Saturday (yesterday) i had a shift at 530 and had to go home at 7 (i have never left early) because i was starting to feel like i was going to faint. every so often i get these weird “headaches”. i put quotations because they’re not so much headaches more of just pressure. along with these headaches i experience numbness in my face and lips and weakness in my legs and hands. my hands become almost limp at times. i also find during these episodes if i eat anything i feel very nauseous. i do have gastroparesis so i’m not sure if that’s related to me feeling sick or not. these episodes have happened in the past and none of my doctors have been able to provide me with answers. i am going away to college in 2 months and i want to have this fixed before then. or at least have something i know will help me when this happens. when this happens i usually try to drink more fluids, take more salt pills, and rest. the only thing with resting is i feel like i feel worse when i rest. has anyone else experienced symptoms like this? if so, how have you managed it? anything i can do to prevent this? thank you:)

Hi. I know exercising is crucial to helping me feel better but i’m having a difficult time getting motivated to exercise. Does anyone have any tips that helped them? Another thing is I definitely haven’t been drinking enough water because I’m always so nauseous and the water makes the nausea worse....has anyone else experienced this? if so what did you do that helped? thank you so much

Hi. I was diagnosed with pots in january of this year. Since then I have been doing a lot better thanks to my cardiologist. I still have my days of not feeling well but as I said I’m feeling a lot better. I’m 18 so I still live at home and my parents have been upset with me that i’m not doing everything to help myself (drinking enough water and doing physical therapy exercises). I know the key to feeling better is exercise but i’ve never been much of a fitness person before and the fact that i’m being forced to exercise makes me want to even less. With that being said does anyone have any tips on accepting that things are the way they are and I need to do what the doctors tell me in order to feel better. I’ve always been one that’s tries to fix my own problems and do things my own way. I know the only reason I’m trying to fix this by myself is because I’m in denial that I have a problem. any feedback is welcomed...I’m so frustrated with everything thank you

hi. I started florinef 0.1mg 3 days ago and I am terrified of gaining weight...has anyone had any weight gain while taking it?? If so, how soon did you begin gaining weight after you started taking it?? I started midodrine 3 days ago as well but I haven’t seen anything about gaining weight on that. thank you.

hi. yesterday i started having a throbbing/numb feeling in my head and face. At first I thought it was just a headache so I took some advil but that didn’t seem to do anything. It got so bad that when I got to physical therapy I was there for 15 minutes and had to go home because I got so dizzy and nauseous. Today I woke up and my lips are tingling/numb now as well and my head just feels weird. My arms also feel like, for lack of a better term, noodles. Just very weak and numb. I’m not sure if there is any correlation but my resting heart rate is usually around 68 and today it’s been fluctuating anywhere from 48 to 83. It was also rainy yesterday and some of today and sometimes that makes me feel not well so maybe that has something to do with this?? I was also at the beach all weekend and i’m not sure if maybe that had a play in this as well? I think tomorrow morning i’m going to call my cardiologist to see what she thinks but I wanted to come on here first to see if anyone else has experienced this and if anything has helped it. thank you

@Juju i’ve been thinking about going vegan as i’ve seen it’s helped people feel better so I’m going to try that. thank you so much

hi. I was diagnosed with pots at the end of january and I've been having a hard time. I'm a senior in high school and before I was diagnosed I worked, I did well in school, I was able to run on little to no sleep and now I fall asleep at 3am and don't wake up until 2pm, had to quit my job when I got sick, am now finishing off senior year doing homeschool, and am unable to start college in the fall as I had planned to. I've been seeing a cardiologist who suggested I do physical therapy and the program is an 8 month program (2x a week and home exercises 3 days a week). The cardiologist has said many times she won't help people who don't want to help themselves and it's not that I don't want to help myself but I'm having a hard time with not being able to everything I used to do. I keep thinking I shouldn't have to go to physical therapy, or take medicine, I'm 18 years old I shouldn't have to do this. I also have bipolar disorder and have had to make life adjustments for that too. I'm just having a hard time coping with having two illnesses. I went gluten free as per my cardiologists request and i'm not going to lie I have been cheating. Has going gluten free helped anyone else? if so did you cut out more than just gluten?(ie dairy, eggs, soy, sugar) My cardiologist prescribed me midrodrine and fludrocortosine a few weeks ago and I'm scared to start it. She told me to take the midrodrine 3x a day but since I wake up at 2pm I can't take it the times she told me to and I don't want to take the doses too close together. As for the fludrocortosine I don't want to take that because I've read it could cause weight gain and I am so scared of gaining weight. Has fludrocortosine caused weight gain for anyone? I have been taking SaltStick pills as requested by my Dr. They seem to help a ton. I was wondering if the saltsticks and the fludrocortosine serve the same purpose (fluid retention)? I wish there was a magic fix to all this although I know there's not. I"m just very frustrated.

hi. i’ve been getting aches in my fingers but it’s usually only one finger that hurts at a time (for example my pinky hurts right now) does anyone know what the cause of this is or if it’s common with pots. i do suffer from joint pain as well in my legs but i’m not sure if a single finger hurting is just joint pain or not. thank you

hi. this past weekend i had a family wedding out of town (it was on saturday) and it is now wednesday and i still feel very tired, achy, and nauseous. i was wondering if anyone had any tips that helps them when they overwork themselves because that seems to be what happened to me. i need to feel ok for this coming weekend because my sister is graduating college and i can’t miss that. thank you

hi. i don’t think my ferritin was ever tested. i’ll have to ask my dr. also thank you i’ll have to look into going to an autonomic center sounds like it may help if i find the root cause. thanks again

i have an appointment next week with my cardiologist, i’ll have to ask her. thank you

hi. i was diagnosed with pots in january of this year. i am so frustrated because nothing is helping and i am a senior in high school and am missing so much school. i feel so exhausted, nauseaous, and dizzy that i physically cannot make it to school. i was using a scopolamine patch and that was working but was making my skin infected due to an allergy to the adhesive. i had to stop using it and now i’m back to square one. my cardiologist reccomended i go gluten free so i started that yesterday. also per my cardiologists recommendation i’ve been taking 2 saltstick vitassiums three times a day. i’ve also been trying to drink more but drinking water seems to make me feel more sick. yesterday i felt so bad my cardiologist had me go to the er and get saline and zofran and even that didn’t help. i just want to have my life back and to enjoy my senior year. i’m so frustrated because nothing is helping and i just want to be able to get back to school.