roxie

O dear do I ever have the same problem!!! and I love that you posted this topic b.c I am going through the same thing right now I have been struggling with my body rejecting my meds (primarily by hbp) since last sprng and it is just a total bummer I don't have the answer, expcept to do the best you can and stay positive. Has anyone been able to go back on meds they had to stop for not tolerating before? I am considering doing that Rachel- may I ask why you only take midodrine in the AM ? (((( hugs)))) Madeline

I am condidering going to see dr grubb. What is an appointment with him like? Will he do tests? (POTS has been confirmed in me more than once) talk about meds? talk about lifestyle? Madeline

How long have you been wearing them for? I find that Ames Walked 30-40 to be the best and least noticable (if it's possible to not notice them with shorts, lol, people stare at my feet and legs in the summer sometimes) but I try to get at 2-4 every few months and then have a good pair set aside if I have a big day that I need extra support Madeline

Hi! I've seen discussions about normal bp and dr's saying that should make us feel better, but does anyone know how to explain POTS so that they realize its not ALL about the bp #. Or just how things work in our body? How do you describe it to other people as well? I'm just curious? Madeline

I'm not really sure who they are for. I am pretty lactose intolerance and am fine with yogurt, so you may be able to eat it as well, but i'm not certain. Probiotics are supposed to help ease lactose intolerance Madeline

I just started eating the YOplus yogurt 2 weeks ago to see if it helps with my digestive issues as well! And I have to say that it does, my stomach is perfect but I am significantly less bloated, like I don't feel like my stomach is sticking out any more and my gas pains and less sharp! So I would say go for it! I would like to learn more about probiotics and what helps, but it is iteresting you bring up celiac, b.c that is something I have been wondering about latily as well. My mom isn't so sure, she wants to read more about it b4 we ask the dr, but for sure probiotics yogurt has helped. At the moment I am seeing if to of the yogurt cups help even more, but I just started that two days ago Madeline

I have this problem to, but unfortunately I don't have a solution, I am sorry you are going through this. If you find anything that helps let me know! Madeline

Does anyone understand why we are sooo sensitive to medication? I can hardly tolerate full doses, and its rather frustrating Madeline

hi! I hope that you aren't having the same problem that you did last year, that you be awfull and super frustrating. I wanted to add that I almost sreamed when you had a reaction to chicken. I'm allergic to chicken! My throat swells up and I get terrible hiccups. People think I"m joking when I tell them, but I have been tested

Chrissy, I think that it's ok you watch the disny channel, I mean when you have nothing to do you have to find somethign to keep you occupied. One of my friends, who is 27, LOVES veggie tales! haha, it's quite funny actually bc he gets upset if anyone makes noise when he is watching Veggie Tales. I started watching them and they are a little bit funny As for me, I like horses and on saturday mornings try to secretly watch "the saddle club" myself, but when no one arounds b.c I don't want to get made fun of, lol, but thats all changed b.c now on hgtv is the new show "carter can" and carter oosterhouse is really hot. To me hot guys trump horses anyday heee heee heee Madeline

HI Chrissy! I read your post the other day, but have been trying to recover from an outing, but feel like I need to post, so I will try to make sense of this. I FEEL YOUR PAIN!! I am 22 years old and have been sick since I was 12, I know exactly what you are going through. It's like your brain wants to be an adult, but your body can't keep up and you get treated like you are a child b/c you can't do everything people our age can do! The thought of not being able to be on my own and living with my parents for ever is one of my biggest fears and makes me feel like my blood is running cold. Actually, it's even harder for me today b.c last night at dinner we were talking about my brother and his girlfriend's controlling mother, my dad says that if they get married the best thing they can do is move so she won't be around 24/7. I said something to the effect that if my parents still live here they would never be able to stay at my parents house bc they will always have to be at her house. and my dad was all shocked and said "Where are you going to be?" It completely surprised him and blew him over that I want to move out. It's like it doesn't even occur to my parents that I think about daily how I am ever going to live b./c I want to be a woman but I have absolutely no idea how to achieve this Idk if I am making any sense, but it just hurts my soul. If anybody has anytips on how to create independance or hope I'd be happy to hear them? As you said in your other thread sometimes I feel less mature than others my age, but I don't think its that I am immature it's more that I haven't had the same oppurtunities that everyone else has had. I finally did complete my GED last year and started taking on online writing class, but that is all I can manage to do right now, I am stuck in a loop that I can't get out of things going wrong with my body, I keep reactin to my medications and it is torture it makes me fear of never being independant even deeper. It's crazy to think that one of my best friends since first grade is getting married next May and I have never ever had a boyfriend(thats something that makes me feel immature and embaressed Chrissy!) Am I crazy? I mean is there really hope for us POTSIES? Madeline

Rachel, it is great that the probiotics are working for you. Is there anymore info that you can share about them? Madeline

can anyone explain how I can have normal resting bp and hr yet I still feel terrible. My bp normally run something around 110/76 when I am lying down and with meds my pulse will be in the 80s but i dont feel good at all. I am exhausted, nauseas, woosie,lightheaded, achy and many other things i just don't get it does anyone understand that? I mean most dr's think its just a bp problem but i think that there is more to it Madeline

I"m a chick-lit girl!! I love the shopaholic series! and the sisterhood of the traveling pants series, the nanny diaries, anything fun like that. I also love elisabeth elliot and joni erickson tada, both very inspiring. tv - i like hgtv, the food network ,and reality shows- american idol, next top model, survivor, beauty and the geek,project runway!! lately since I haven't had much energy I have been listening to books on tape, and that is an easy way to pass time if you can find them. does anyone know where to get them cheap? i norm get them from the librarby, but being in a small town equals small selection Madeline

my thermostat is not set, I could not convince my parents. My biggest sin is that I overdo ALOT, almost everyday and everyday I say today I am going to rest and then I either get to caught up or have too much adrenaline. I am really trying to learn to not overdo it, but it is not easy b.c I get bored. Anytips on overcoming boredem? Madeline

I can't stand shaving my legs, its a pain in the butt and I get terrible razor burn that last for days, sometimes I wonder if it has anything to do with my circulation? Anyways I have tried almost every hair removal method I can find shaving, waxing, threading, depilatiories, epilady, and electric razor and am just not happy. Recently I decided to start electrolysis on my eyebrows, I've only had one treatment so far, but am happy with the results! So, I am considering having it done on my legs. I love the idea that by the time I am 23 I will not have to shave again!! Does anyone know if it is safe to have electrolysis done on your legs? It only works on the hair follicle so nothing is ingested or anything. I will have to talk to my electrolygist next time I go. Madeline

yes,yes,yes i have this problem!! I wear sunglasses out of the house and have to keep the drapes closed in the afternoon b/c we get the afternoon sun. Madeline

Like Sophia said I think it depends on the person and the intent. I know that for me personally reading posts can help me feel like less of a freak, I notice that there are a lot of symptoms dr's don't link to POTS that we indeed have. For example I have spurts of hbp, it usually correlates with medication and other times dr's who don't understand POTs think that my bp isn't right that I can't have the disease unless it is super low. I always struggled with this and after searching posts about bp i realize that POTS can cause both high and low bp.

I have this problem and I wonder if it's common in POTS or if it's just me. I have been sick for 10 years and have tried TONS of meds, but nothing helps that drastrically. My best combo has been florinef/mestinon/prozac,that got me to maybe 30% functioning on a good day. Out of the blue last spring, my bp went high and didn't go down until I cut all three meds in 1/2. I haven't been able to get stronger on this lower dose, but I notice this happens with almost every med. I take it for a while and then my body seems to get tired and almost rejects it, usually in the form of hbp, but not always. Does anyone else have this? Right now, I am beyond frustrated and at the end of my rope b.c I desperately want to be stronger , but I have no idea of what to do next? Has anybody started and stopped only to retry meds? What about rounds of like 6 months on different meds and then switch? Does anyone have any ideas? I have been on: florinef prozac elavil birth control procrit dexadrine midrodrine mestinon and prob some others I can't remember Madeline

WOW Elizabeth! How is your POTS doing?

HI!! I put "other" b.c I am confused and just don't know what God's plans for my furute are. I have been ill since I was 12. Last year was the strongest I have been, but still no where near normal and not able to have a baby! Now I am struggling with my meds again trying to find the next things that helps me to get some strength. Right now I am 22 and somedays I think that I would like a child SOMEDAY (def not near future) but then there are days I don't know. If I get stronger adoption is always an option and something I admire, but i just don't know. I joke with one of my friends that I only want to have a biological baby if I marry a hot guy so I can have a son just like him, but the truth of the matter is I still have yet to find a guy that is going to stick around for more than a date or two when they realize I have a seriously altered life, so when it all comes down to it I JUST DON'T KNOW I see all the stuff my mom has to do and I wonder how I would ever be a good mom b.c I just don't have stamina, Madeline

i guess it feels different for everyone. does anyone have blood pool in their face? sounds wierd, but it pools in all my extremities, like my nose and cheeks get the blotchy purple as well

idk if i ever thought swelling felt tight, but my legs looks like that fleshiness that swells and feels like swollen skin to the touch, but they don't actually get bigger, if that makes sense

blood pooling is hard to explain, but along with the heaviness and purpleness sometimes I feel a burning throb like i just shut my thumb in a door, but its my legs. it's just all around uncomfortable and i find in different postitions it feels differents ways Madeline

My most successful combination of meds has been mestinon, florinef, and low dose prozac..... but last march i have been having trouble tolerating them, my bp as been going high, so right now we are trying to figure out what to do, but in the last 10 years those did the most for me, hopefully I can find something to help SOON hanna your progress is wonderful!! Do you think you could explain a little more about your experience with epo? Are you going shopping with or without a wheelchair? I am trying to figure out if I should give it a retry and am confused, the shots are quite painful, do you take any other meds? Madeline