imapumpkin

happy to help! could you share the link for the site that's having a sale? i am looking to get another pair.

sounds like the vision stuff is a migraine aura. not unusual/dangerous. as much as it ***** at least its a somewhat heads up that the migraine is coming so you can take something ASAP. i've had the hand numbing thing it was really scary.

http://www.compressionsport.com/zensah-compression-leg-sleeves-6055.html These were actually recommended to me by my neurologist and have been a LIFESAVER for me this summer. regular stockings get so gross and sweaty. In my experience they have been every bit as effective as the stockings and 100% more comfortable. They're actually super comfy i find myself putting them on way more because I know I need them and they don't bug me at all the way stockings do. Totally worth the price of 39.00 for a pair (sorry to say that you're probably not going to find anything cheaper than this that are decently quality and this is about how much i paid for each pair of my compression stockings from a medical supply store.) I also had a good experience with ordering them online. There are a ton of colors to choose from. The measurements are true to size and shipping is free! Hope this helps!

do not give up. as MomtoGiuliana said, POTS can take years to recover. I totally get where you're coming from because I too am very debilitated and I feel like my twenties have been stolen from me while I watch my peers accomplishing so many things I wish I could be doing. But having something to work towards, something to look forward to...it helps you keep going and gives you a reason to get out of bed in the morning. Who knows how you will feel in a year, or two years or five? You could be totally better. I would say definitely accept that for right now you have limitations, but accepting that this is going to be your life forever will not help recovery. Keep positive! I know it's hard, and I have to go to therapy because I'm so frustrated and sad about my situation,but believing that one day this will be behind me is a powerful motivator. keep your chin up! you're not alone.

make sure that both your surgeon and anesthesiologist are aware of your situation. explain that you need extra fluids and that your BP is low. When I had heart surgery last year they were very careful to keep my very well hydrated. don't worry about blood loss...they will be monitoring you very carefully and will give you supplements post-op, and if your hemoglobin is too low, a possible transfusion...but like I said they're going to be very carefully monitoring it so don't let anxiety over it make you crazy.

YES! I had to go to the ER last week (mostly unrelated to POTS issues) and both the nurses and the ER doc I saw knew what POTS was. The nurse was like "I'm an ER nurse, of course I know what POTS is." I told her a few short years ago even the doctors there had no clue. I'm glad the awareness is spreading.

I posted the thread because I wanted to know if anyone else had tried the anti-candida diet and wanted people who had tried it to share how they got through the rough parts........ Candida related issues are extremely difficult and not very accepted by mainstream medicine so the only way to really know is trial and error. At this point, my doc strongly suspects. My reaction to the nystatin was not negative. I'm having die-off symptoms from having drastically changed my diet in a way that is starving the yeast and the new yeast-killing supplements i'm taking. As I talked about in this post months ago: http://forums.dinet.org/index.php?/topic/25131-aggressively-going-after-root-cause-of-pots/ I had a very positive reaction to the nystatin. My energy level got better, and my light sensitivity GREATLY improved. I had a week off of the nystatin and noticed my light sensitivity coming back immediately. Also, when I upped my nystatin, the fatigue got worse. Doc says this is not a side effect of nystatin..nausea is. I've also had a long history with yeast related issues, both feminine (sorry, but you did ask...) and on my skin as rashes. I also exhibit a lot of the symptoms of yeast-overgrowth, like intense cravings for starchy foods and intense low-blood sugar when I go for long periods without starchy foods. The doctor says this is very compelling in indicating it could be yeast. I'm not trying to argue with you I just want to explain where I'm coming from. I will definitely be vigilant about the C. Diff risks, so thank you for bringing that to my attention.

LMG: Thanks for the support...It's really daunting to be dealing with something that might eventually help, but at the moment is making this SO mcuh worse. DeGenesis: It's not a bacterial overgrowth-- it's a fungal infection. Both of those diets conflict with the Anti-Candida diet. I don't have IBS.

In Feb my integrative medicine doctor decided he wanted us to aggressively go after what might be causing my POTS or inflammation that is causing POTS. I've been on a low dose of nystatin since then. I saw my doctor this week and he said that based on my reaction to the nystatin, it's a good indication that I probably have a yeast overgrowth that is contributing to my terrible fatigue (which is persisting despite the fact that my blood pressure is doing beautifully.) In addition to the nystatin which he wants me to gradually increase, he gave me a Probiotic to promote good flora in the gut, and a good yeast that fights the bad yeast. Finally, I've been put on the Anti-Candida diet (loosely, my doctor doesn't insist i strictly adhere to it, he understands its very difficult and merely suggests i avoid all the foods). It's been 3 days I am out of my mind miserable. I am not at all equipped to handle the die-off symptoms. I feel so much worse, which I know is what happens before you feel better but I have no idea what is normal die-off awful and what I should be concerned about. My system feels totally overwhelmed by the toxins in my body and my PCP doesn't believe in integrative/holistic medicine and thinks die-off is not real so I feel like I can't ask for support from that office. Apart from feeling physically miserable (my body has responded to the lack of all sugar, cheese, sauces, dressings, condiments, anything with flavor...by feeling insane fatigue and a feeling of simultaneously being too full to eat and also very strong hunger pains) I'm in an intense amount of emotional misery. I enjoy eating a lot, i don't smoke, drink, I have no vices besides yummy food. So now, I am not only not allowed to eat most of the things that I love, but its another element of my life that I have totally lost control of. It's not enough my body won't let me be an independent adult, work and support myself, exercise, participate in normal everyday activities that other people in their 20s get to but now I can't even enjoy food. I feel like a little ball of highly concentrated misery. I want to just sleep until the stomach pains go away. Life with POTS isn't hard enough, now I can't even have a milkshake if I want. Or mac and cheese for comfort food. Or barbecue sauce during summertime. I should also put it out there that I've always been a very picky eater to begin with, so whenever someone has tried to be like "but there are so many things you can eat!" I want to karate chop them. The physical withdrawal symptoms in addition to my depression of losing another aspect of my life has turned me into to pure evil. It's like the worst PMS of my life where irritability is concerned. I would rather go through another 3 months of recovery from heart surgery than keep doing this anti-candida diet--that's how awful i feel. Please please PLEASE if anyone has tried this and been through similar die-off symptoms please let me know what helped you and how you got through it!

sending good healing vibes!

I get made fun of because when I'm brain fogged I frequently mix up my words or pronounce them wrong/slowly.

I know this might sound lame and if the heavy-duty stuff isn't working this may not, but double thick milkshakes helped me a lot when my stomach acid/gastritis was acting up. Might coat the stomach better than yogurt?

thank you, Hearts =) always good to hear

**UPDATE** So, here we are, a year later. I would say that with the exception of some non-POTS related health issues, I'm doing pretty well. Still fatigue, but not nearly as bad. Not brain-fogged (but it's not summer yet so we'll see how that goes). My blood pressure has been doing beautifully and my capacity to do activities has definitely increased as the months go by. So, all and all, can't really complain. Until tonight when my boyfriend informed me that his mother had, yet again, made an inquiry about my ability to have/take care of babies in the future and that she has been wanting to ask me about it, but doesn't know how to bring it up. I swear. if this woman doesn't help increase my blood pressure, I don't know what will. In her mind, the fact that I am currently unable to work is very concerning since having a baby (or babies) is like having a full time job. I am aware that the physical/mental/emotional toll of having a newborn, or toddler, or child in general is very high. I have no delusions that having children is not hard work, probably the hardest there is. In fact I know this about being a parent and I want to eventually be one anyway, which I would venture to guess, is how most people feel about becoming a parent. The fact that I have POTS and currently cannot work is an obstacle. But I am up to the challenge. I have always want children. I very much want to have a family and certainly plan to start one in the future. We don't know where I will be healthwise once my boyfriend and I decided to start a family. My hope is that things will have vastly improved. Regardless, having babies is something that I certainly plan to do in the future. The fact that my boyfriend's mother is still asking these things and still placing my value on my ability to give her grandchildren rather than the fact that I'm in a happy loving relationship with her son is very STILL very upsetting to me. Keep in mind that I have been in a relationship with her son for 4 and a half years. She thinks that because she had five children she is the authority on all things parenting. I have told my boyfriend to explain to her: I have always wanted to have children. I plan on having children in the future. As far as I know, there is no medical reason that will prevent this from happening. The end. I refrained from adding a "and also mind your own business, this is a totally inappropriate thing for you to be asking me." (oh, and just as a cherry on top of the sundae, all this bologna came immediately following her making a snotty comment about the fact that when my boyfriend visits me--we are long distance and we both still live at home with our parents, myself because of POTS and him because of crushing student debt--he sleeps in my bed. I believe her exact words were "And her mother puts up with that crap?" and then made a snarky comment about how I'm going to get pregnant because we share a bed when he visits. It's been 4 and a half years. I'm very diligent about using protection. And there isn't hanky-panky going on every single second. And I'm a grown woman. So there's that. But to snark about how I'm going to get pregnant because of the premarital relationships immediately proceeding her being oh so concerned with my childbearing and rearing abilities baffles me. i am THE MOST BAFFLED.) My boyfriend has spoken to her about this before. He does stand up for me. The last time she pulled this malarky he yelled at her and then he didn't speak to her for a week. He knows exactly how difficult and inappropriate she is so he is not phased by stuff like this so he doesn't necessarily get why I become so upset upon hearing about her latest judgement of me. Why do people feel they can make comments about other people's reproductive plans?

it's never helped me sleep, and the withdrawal is not a good time...in fact I SUPER can't sleep when I go off it.

I had a terrible experience with a geneticist that my neurologist recommended. I don't know of any genetic POTS causes other than EDS or mitochondiral causes but a few connective tissue disorders are associated with POTS (not causes of POTS). When I was there they were looking for signs of Marfan Syndrome and Loeys-Dietz Syndrome (both of which you'd probably have serious signs of having and notice long before this) and neither of which I even remotely had any signs of. I was however told to revist a geneticist before I start having a family incase there are any inherited risk factors. I don't know. For ME it was a total waste of time but I have no hypermobility.

congrats!

The under-the-tongue losanges i used to use before i switched to injections are a berry flavor and it's not bad at all (i'd say the most like candy than any supplement i've tried). the brand is called "protocol". it's not sour but it's tart which is similar.

Sorry, I have to rant because I'm really unhappy that my doctor insisted I take a drug I didn't want to take and now I'm paying for it BIG TIME. On the prescription information about midodrine it says that people who experience urinary symptoms (I have frequent urination) can experience exacerbation of their symptoms. I didn't want to try midodrine, I had serious trepidations about going on it even though my neurologist prescribed it last july and my blood pressure has been really good lately, but my neurologist insisted. So I went on the midodrine and did indeed experience urinary symptoms i thought were just the medication making my already annoying symptoms worse. I upped my exercise the past few weeks so when I started getting flank pain i thought it was probably muscular. Then the flank pain got way worse and I had to go to urgent care over the weekend and they said I had +3 blood in my urine and promptly put me on Cipro. It had gone beyond just a normal UTI and made it's way to my kidneys...and you don't mess around with kidneys, this could have lead to serious complications. I usually seek medical attention at the first sign of trouble but because the midodrine told me I would have worse urinary symptoms, I didn't go to the doctor sooner making the infection much worse. I am on my 4th day of antibiotics and I'm miserably uncomfortable. Given that my neurologist is a POTS specialist, I'm surprised that she urged me to go ahead with the midodrine even though I specifically told her about the frequent urination at my last appointment two weeks ago (to which she responded she was so concerned with the urinary symptoms and my lack of period that she insisted i see an endocronologist STAT in case it's a pituitary problem) Shouldn't she know that one of the main drugs shes prescribes to her patients would do that to someone with my symptoms? I feel frustrarted and uncomfortable. I think my discomfort is also compounded by the fact that I went off the pill for this month to try and prove that my period has only disappeared because I've been on it for 7 years and not due to a pitiuitary problem. My reproductive and urinary systems are both in revolt. I've also since read that midodrine can not only mask a UTI but cause one. So yeah, it gave me a UTI which developed into a kidney infection. so midodrine gave me a kidney infection. I guess I can be used as a cautionary tale about people who pee A LOT taking note of the risks before starting midodrine.

I've been on Metoprolol for over a year and it's kept my tachycardia in check...at rest my HR is between 75-85. Then all of a sudden just over a week ago my resting HR zoomed up to 98 resting and 122 standing despite having taken the metoprolol. At first I thought the increased HR as a reaction to starting midodrine. I went off the midodrine a few days ago to give my heart a rest but it's still freaking out. I can't think of anything else that would be causing this higher heart rate. The only other change to my medications has been going off birth control this month. Can you get exacerbated tachycardia from going off the pill? Can you body build up a tolerance to beta blockers? Because thats they whole reason I'm taking metoprolol...to keep my heart rate down. I'm EXHAUSTED from having a contantly pounding heart, in addition to the chronic fatigue POTS gives me every day. Anyone have any insights?

I'm constantly low on iron. I've been taking iron supplements for a year and a half and still sometimes test boarderline anemic. Current theory is it's a candida overgrowth in my gut, beacuse apparently they often present together.

ALA was recommended by my integrative medicine doctor. 200 mg. I took it a few times and didn't really notice any improvement

People tell me I don't look sickly, but that I am EXTREMELY pale. I am very fair-skinned to begin with, but given that I have to avoid the sun (the heat aggravates my POTS and makes my BP drop) and the fact that POTS patients have circulation issues, it makes sense that paleness is a common symptom for us. Seriously, total strangers comment on the paleness of my skin. I started wearing much more makeup to avoid these awkward encounters,but on a day I don't feel like getting completely dolled-up, with a little blush, mascara and some tinted lip balm, people comment WAY less.

my neurologist said that the body has a natural blood pressure rhythm that is at is lowest between 4 am and 10 am so it's makes sense that that's when people with POTS feel the worst. I also feel better between 10 PM and 2 AM.

nails are normal. just weird colored lips.