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mamuseh, i've heard of butchers broom and licorice root but what was pomegranete juice used to help? thanks madeline

HI!! A couple of years ago my dr torn ligaments in his knee and in physical therapy they would put ice on his injury to constrict the veins and reuce the swelling,so he started to wonder if it would work for his patients!! He has been having me pack my legs in ice for 20 minutes 3x's a day and IT WORKS. My mom took fleece and we sewed feed corn in them! This is a pain in the butt to do everyday but it helps WARNING- if you're taking midodirne it will give you high blood pressure, but I think it's ok for anyone else to do!! Just thought I wonder offer the alterantive therapy up if you all want to try it! Does anyone else have any alternative treatments? Madeline

hmmm, idk reallly, there are a lot of dr's out there that don't want to listen. sadly you may have to look for another dr but i think that there is research that says bp doesn't always drop and just posted in the "what's new" on this site was research by dr stewart that says the adult form doesn't always have lbp? if i remeber that correctly i guess you should keep trying and praying that the right dr will come into your life

HI Lisabeth! Welcome, I hope they your dx figured out soon! I have had the blue pain problem ever since I got sick, whihc was 9 1/2 years ago. We have always thought that it was just from the blood pooling, thats what my dr said. I get it in my hands, my feet/legs, and have been recently noticeing that my nose turns all red and blotchy at night also. This problem even happens when I am sitting up and it happens fast upon position change. although I believe its related to POTS, I don't know if every patient has this problem. When I go to the dr's residents always ask if my legs swell and I have to say, no they turn puprle. They alsp feel like ice, at least my hands ppl are always commenting. my best advice would be to get support stockings. Hope this helps Madeline

Hi! I have two seperate unrealted questions, but am putting them together: 1-What is the best time of day to exercise? 2- Has anyone tried wheatgrass? I came acrosse a site the other day that said drinking wheatgrass can boost your bllod volume b.c it is almost identical to hemoglobin?? hmmm, but it also said something about "dialating passaeways for clearance" idk what that means, but i know dialation is torture for us

hmmm, maybe if i start really slow and only a few days a week. how many days aweek does everybody do pilates? for how long? madeline

HI! I see that alot of ppl handle pilates well and I would love to be able to that as well, but am i am wondering if am the only one with this problem....it makes me constipated?

thats a great way of putting it!!! is there anyway to tell if you have the noerepinepherine transporter problem? how do you know if you have hypoadregnic pots? i've wondered that for a while now madline

HI ALL!! I've seen some posts about ppl having anxiety attacks and such. It makes me curious, is general anxiety a side effect of POTS? Or is it just commen for ppl to be anxious? I seem to go through spurts with a lot of generalized anxiety Madeline

Is it possible to have the POTS that goes away in your 20's without being tall? I got sick after a little virus when I was 12, I am pretty thin, but I am barely 5"2" tall? My whole family is petite so I don't think you could ever expect me to be a normal height? What are ANS tests? Madeline

What's gastroparesis? What's motility? I don't know what they are but I have horrib IBS is the dysphagia something you really need help with or just a nuscience? madeline

HI! This is a weird question, but its a problem I have and wonder if anyone else does too. My brother laughs at me for saying this, but does anyone feel like they have a small throat? I get the tiniest things stuck in my throat and choke,then I either puke or hiccup. I have to be concious of chewing my food up very well, like baby food, I have even felt like I got a little florinef tablet caugt before and have to drink a glass of water to get it down Am I the only one? Madeline

What leg exercises do you do? Madeline

does anyone start reacting to meds after taking them for prolonged periods of time? anyone have hbp for prolonged periods of time? also, when your hbp does go up do you feel awful? madeline

I've had this problem my whole illness which is 9 years. My dr would never let me use sleep aids though, the only things that have helped me is a lukewarm both and then laying in bedd doing deep breathing exercises for at least 15 minutes

Old Lady lighthead: Are you saying specifically vitamin b6 can help you to feel better. I had a dr tell me to take 100 mgs of b6 a day to help my carpal tunnel, but after 10 days taking it I had to stop, b/c it made me feel absolutely horrible. Do you know what that means? Maybe I was jus taking TOO much for my body, seeing as my multi has a 100% of the daily recommended value. I'm confused MAdeline

if you haven't noticed yet, i am trying a way to try aqautherapy at my house instead of having to go somewhere, but since endless pools are soooo expensive, i was wondering... has anyone tried using one of those inflatable spas? They are like 3 feet deep. i mean you cant swim but you can kick your legs couldn't you? and they are a TON cheaper what do yoou think? Madeline

HAHAHAHAHA!! yes, i absolutely hate bananas, they are mushy and gross, their flavor is putrid and i have felt that way sinceI was a little girl ut ofcourse taking florinef you have to eat them sometimes b/c ironically ever since I was little i've hates orange juice as well i like most other fruits though I plug my nose to eat them or put peanut butter on them and it helps soe, but yes i genuinely hate them Madeline

HI! So maybe insurance won't cover a therapy pool, I'm am bummer But I am curious, those of you that swim, how often do you swim? How long do you swim? If I can't get my own pool, maybe I can go to someplace once or twice a week, is a pt place or gym better? Any advice would be helpful Madeline

bummer i knindof knew that but was hoping, maybe someday

HI All! I've been reading the posts about swimming, a couple of summers ago i did some swimming in my neighbors pool and it was very helpful, but we only get 2 months to swim a year if we are lucky here b/c of the cold. Through reading the post i see that aqau therapy is very helpful and I would like to try it again, but it would not be easy to get to a pt facility or a gym. So does anybody know if insurance or medicare would cover an endless pool or an at home therapy pool??? I hope with all my heart the answer is yes for me and everyone else here, but does anyone know? Thanks Madeline

HI! We've actaully talked about making my dog a service dog for me, but haven't been quite sure? She's stubborn, but we were thinking that we could teach her how to get my medicine holder or the phone stuff like that. Also she is very perceptive, like when I had surgery or even last week when I wasn't feeling well she would just sit with me which is very comforting, if a dog helps you with noting else when you aren't doing well having a little puppy there is nice!!! Other then that I don't know what to say. we haven't had much success training her on our own though. I think you should go for it if you can get the dog trained and in tune with you!!! Take care Madeline

ellen, florinef really causes carb intolerance? where did you find that out? do you know what the symptoms are? i woud like to know, I have been taking florinef for 9 years and have seen many of the side effects. Pat, I am also wanting to loose a little bit of weight and am not quite sure how? Madeline

HI! I know that florined and epo can do it. I tried epo, but my blood counts didn't go up enough? Deucy kub does salt taste bearable in crystal light? does it reduce the amount you put on food b/c I am very good about my salt, but there are just some days when I'm not feeling good and all I want is toast, but can't really eat it b/c I need to have something salty. Does it taste ok in gatorade or anything else? Thanks, Madeline

OMG YES!! I've been struggling with this for as long as I can remember, its awful and I hate it. I got through it with my period, and I wake up at night drenched in sweat like I sweat through my pj's and sheets but a lot of times I will be shivering as well, so wierd. I thought I was the only one take care madeline