cmreber

Will do, and you can do the same! It isn't going to be an easy change, but I'm starting slowly and working my way into the diet lol Wishing you the best as well! (Hey, I figure, it can't hurt, right? And at this point, I'm willing to try just about anything!)

Mydoggielovesme2, I'm also giving the Paleo diet a go (today is day 3 for me). Hope this is at least partially successful for both of us!!!

My biggest goal would be to get my old life back. Of course, that probably is pretty unrealistic LOL. Sooo...I'm thinking baby steps. Definitely more exersize, I'm giving a new diet a go (actually starting yesterday, so we'll see how this goes!), and I'm trying to keep a more positive outlook. I had been making progess over the past year, but feel like I suddenly hit a brick wall and then went backwards over the past month or so. I think this is because I overdid it. Whatever I am doing isn't working so well anymore, so my plan for this year is to go back and start again. This time, I am going to ease into exersize rather than charge into it like before; and the biggie is that I am telling my friends that they may see a lot less of me and I am going to make it my goal to not feel guilty for not participating because right now I just need to focus on me. This is not so easy for me, because I have always been one to say "yes" no matter what, even if I feel terrible. But I'm realizing this hasn't been healthy or helpful in my recovery, so I'm going to just focus on doing little things to try and get better, so maybe one of these days I can go do all those things again.

I came across this on a friend's facebook wall and I couldn't help but think of many people on here. We struggle with so much and sometimes it is too easy to let ourselves get bogged down in all of that. We feel less fun because we can't say yes to going out and having a good time with our friends, we feel guilty because we can't take care of our households like we did before, and if anyone is like me, sometimes, it is very easy to feel a little like we have lost our worth. But the important thing to remember is that we haven't, and we still matter, just as much as we did before. And with that: ***A well-known speaker started off his seminar holding up a $20 bill. In the room of 200, he asked, "Who would like this $20 bill?" Hands started going up. He said, "I am going to give this $20 to one of you but first, let me do this." He proceeded to crumple up the $20 bill and then asked, "Who still wants it...?" Still the hands were up in the air. "Well," he replied, "What if I do this?" And he dropped it on the ground and started to grind it into the floor with his shoe. He picked it up, now crumpled and dirty. "Now, who still wants it?" Still, hands went into the air. "My friends, we have all learned a very valuable lesson. No matter what I did to the money, you still wanted it because it did not decrease in value. It was still worth $20. Many times in our lives, we are dropped, crumpled, and ground into the dirt by the decisions we make and the circumstances that come our way. We may feel as though we are worthless. But no matter what has happened or what will happen, you will never lose your value. Dirty or clean, crumpled or finely creased, you are still priceless to those who LOVE you. The worth of our lives comes not in what we do or who we know, but by WHO WE ARE. You are special--don't ever forget it."*** ~Happy Friday and hope everyone has a good day and weekend!

Naomi, part of what I love about this forum is how much we can all relate to each other. This is the place where I feel the least alone, because we all actually understand. I know that there are a lot of people in my life (those I've let in at all, when it comes to my health issues) and they try their best to be there for me...but sometimes I feel like they don't quite get it. And, seriously, I don't blame them. If I was not walking in my own shoes, I don't think I would understand it either! It is so difficult because I think many of us do feel split in two. It has been one of my biggest struggles, so know you are not alone in that! I think many of us also feel like giving up sometimes. I know there have definitely been some dark days for me along this journey...and sometimes I can't help but think, someone let me off this ride! The most important thing to remember, though, is just how much meaning we can still find in our lives, even now. We can be grateful for the good days and not take feeling good (or mildly decent, in most of our cases) for granted. I think one of the most positive outcomes for me was finding out who truly cares about me, and which friends/family members didn't matter that much in the first place. And the ones who have stood by my side now mean more to me than ever before.

YES Lel! I seriously have an issue with reconciling my pre-POTS and post-POTS "selves", so to speak. Me 2 1/2 years ago... dirt bikes, surfing, snowboarding, kickboxing, hiking...you name it, I did it. Me now...sad, sad, sad! lol People ask me to come to lunch and I have to think twice about it! And, like you, I think I still like to think of myself as that adventurous soul that I once was. I truly hope, with every part of my being, that someday I can get back to that person. I hope all of us can!!!

Mydoggielovesme2, I agree with Bebe, it is always better to find a healthy place to vent when we can. It can be so difficult sometimes. I know I get caught between not wanting to bottle everything up inside, but also not wanting to complain to my friends and family, YET AGAIN. But that is the wonderful thing about the community on this forum...so we can vent sometimes when the going gets tough. And everyone on here certainly understands! I'm sorry to hear about your struggles. This illness can be such a juggling act, which is so unfair because none of us on here even have the energy to juggle! I hope that your in-laws understand that you are doing the best you can to help them. Also, it's crazy to think that there are people perfectly capable of doing things who simply choose not to. I do try not to judge because everyone has their own battles, but it is so hard to wish you could do something so bad and then see people take everything they have and do for granted. Maybe there are things you can do long-distance to help... have a cleaning service come and help them out that way? Or maybe there are people you can get in contact with who live in their area who can prepare some meals and deliver it to them? Bebe, just wanted to say that I am sorry for you loss. I lost my grandma this fall also (she raised my brother and me) and it has been so difficult without her in my life anymore. I too have felt guilty about not spending as much time with her as I should have, and much of that had to do with not feeling up to visiting, but I know that she understood and there isn't anything I can do to change the past, so I try my best to hold on instead to the wonderful and happy memories that I have with her.

When I first got sick and was in the hospital, my vitals would be normal laying down or even sitting. HR 75, BP 90-110/60-70. As soon as I would stand my heart rate would go to 160s and my BP would get up to 170-180s/100-120s. The doctors at the time had no idea what to do with me. The weird thing was, once I was released and went home and put on a holter monitor, my heart rate would still get up from 160s-190s, but my BP started dropping upon standing (would get down to 60s/40s) instead of raising; sometimes my BP monitor would simply error because it couldn't read it. When I went to a cardiac specialist at Standford he diagnosed me with POTS and said I had textbook symptoms because my BP dropped so low after standing for 5 minutes. The weird thing is that later, when I went to Mayo and had the TTT and other testing, it showed that both my heart rate and BP rose significantly, which was exactly how it behaved in the beginning, and they said, along with my other results, that I have a hyperadrenergic state. Not sure if any of this helps you, but I do know that when I'm feeling lousy, I never know if it's because my BP is too high or too low, just that it is off. Sometimes I'll get shaky and feel awful and it will be high, but sometimes I'll think it must be high and it turns out it's really low. Mine seems to be helped by a beta blocker (I take 50mg Metoprolol twice a day) and salt and fluids, along with lots of rest and allowing myself breaks throughout the day.

I have always loved to read, so at least that is something very POTS-friendly. I also am a writer, so that is also something that I spend a lot of my free time doing. (I actually self-published my first novel last year and am almost ready to get the second one out in print, woohoo!) Aside from that, I love my Netflix, love playing with my dogs when I can, and my husband and I have a beautiful walking trail behind our house that is flat and goes for miles. I have been trying to work my way back up to hiking, but the walking at least gets me outside in nature...which is a place that I need to be to feel whole. I do love dirt bikes, though getting back into that has definitely had its ups and downs--same thing goes for snowboarding. When I have my good days, I try to take full advantage of that and get as much exercize as possible. I also have been having a lot of success with yoga, which I think has been helping my POTS. I like to hang out with my hubby and friends and I can still go wine tasting as long as I sit at the tasting rooms, hydrate, and don't overdo it. Going to the movies, seeing musicals, anything to get me out of the house! lol And as long as I give myself enough rest time and allow myself to take it easy on bad days, I have kept up my big passion in life as well--travel!

I know that my grandma had idiopathic thrombocytopenia purpura (ITP) and her first symptom was bleeding gums that wouldn't stop and then tons of bruising by the time she got to the ER. Basically, they determined that her body had started destroying its own platelets and her count was insanely low. I would think with something like that they would notice the abnormal platelet count after blood tests though. I think she had a bone marrow biopsy as well though...

tpapik, hang in there and I hope things get better for you! I really do believe so much of what we go through in life is attitude. I used to work at the hospital and I have seen countless patients, super sick, many of them terminal with cancer, etc., and they STILL kept their positive attitudes and smiles. Like you, I am very determined to keep a positive outlook because I think to lose that would be to lose myself. Besides, our attitude is about the ONLY thing we can control with this thing! lol! I actually just came across this wonderful quote: "There is a saying in Tibetan, 'Tragedy should be utilized as a source of strength.' No matter what sort of difficulties, how painful experience is, if we lose our hope, that's our real disaster.”― Dalai Lama XIV Mydoggielovesme2, thanks!!! I am trying. It's not always easy, but I'll be doing my best! Lots of luck to you as well on this long and difficult journey we call Dysautonomia! i hate bananas, I can't even imagine having this at age 12! For that, I do count myself very lucky because I can't imagine having to go through my high school and college years with this! It sounds like you have had a lot to deal with, physically and emotionally. I was fortunate in the fact that I was an adult when this all happened, so I didn't have to figure out the whole "overprotective parents" thing. Plus, I was raised by my grandma who had her own health stuff going on (I recently lost her end of this last year), so that wasn't really a factor anyway. I do understand, though, because sometimes I feel like my husband can be a little on the overprotective side. I mean, hey, I am SO beyond thankful for that, especially having read some posts on here about unsupportive spouses and family members! ... but, sometimes it can be a bit much. Like, hey, I've got this, don't worry so much about me! lol Like, we're going to be getting a hot tub soon and he made sure to let me know I am not allowed in it alone because if I pass out I'll surely drown lol. Gotta love him for caring so much though ;P It's such a hard balance sometimes, fighting between what we want and what our bodies will allow, and then what we feel we can do and what others feel we should (or shouldn't) be doing! That has probably been the most frustrating part for me. I will definitely feel free to PM you and you can also always do the same! Thank you so much for the responses everyone, and hope we all have a good rest of the week!!!

I wasn’t really sure where to post this, because it’s kind of just me rambling, but I thought I would put it out there, just in case anyone here has felt the same. I have had POTS now for almost 2 and ½ years, and, like everyone on here I’m sure, things have definitely changed for me. The hard part for me has been the fact that I was 25 when this happened, and I feel like I was kind of robbed of the past couple of years (I seriously spent the first 6-8 months basically sleeping! lol). I’m not quite sure what brought this on, but I was just kind of having one of those moments where you suddenly stop to evaluate yourself and your life and it occurred to me that pre-POTS Christine and post-POTS Christine are two very different people. I think I’ve been in a serious rut. And I’m kind of thinking I’m not too crazy about that fact. So. What to do? Well, the good news is that my POTS has definitely improved from where I used to be. So that definitely helps me get back to some of my pre-POTS activities, etc. But I think it goes beyond that. It isn’t just, oh hey, I can tell my friends I’ll meet them and not flake all the time now, or I can actually get the laundry done today. I think there is a mental/emotional component that I have to address. It’s hard to explain, but it’s sort of like, I know that I’m older now than I was a couple of years ago, but…man, it’s like I’m OLDER now. I used to do my hair and make-up, wear fun clothes and fingernail polish to match. Now, I’m lucky if I swipe on some mascara for the day! Before, my friends would suggest something and I wouldn’t think twice about saying yes, no matter how random or spur of the moment or crazy; now, I think, gee, I don’t know, how will I FEEL? I miss my old self. And I think that there are things I can do and choices I can make to try to get her back. Sure, I can’t be spontaneous and fun all the time, because, let’s face it, I can’t just stop having POTS. But, I can take the opportunity whenever I have good days to plan out fun outfits, do my hair, go get my nails done, put on some makeup. Go to lunch with a friend. Something. Stop acting like an 80-year-old grandma and more like the 27-year-old I am! You know what, I gave it a try, and I actually feel better. I looked in the mirror today and almost felt like I transported back a couple years to my 25-year-old, pre-POTS self. Now,of course I realize this might not always be possible, but I think mentally I have trained myself over the past couple of years to just be in permanent “sick mode”, and I honestly don’t think that I am going to emotionally get over this 2-year + slump if I don’t try to get OUT of “sick mode”. So, I’m going to make it my goal this year to try to achieve this. Now, I know that I will have plenty of bad days, and feel awful sometimes and have to flake on people....I can't always be the "Yes Girl" anymore...and that’s okay. I can accept that I have limitations. But I’m also going to take advantage of every good day I have and get ready and dressed up when I can, feel good about myself, and try to feel like I’m my age again! Hopefully I can keep this up, at least to some degree. Crossing my fingers and hoping for the best! (And sorry if this was lengthy and totally random lol )

When I did all of the autonomic testing at Mayo my QSART was abnormal and my neuro said I had a neuropathic component.

I'm not sure what the typical duration is to be considered POTS. Currently I'm on beta blockers, which seem to regulate my hr (for the most part) pretty well and I don't get tachycardic all the time. When I'm off them, my hr gets up between 140's and 170's upon standing (190's in the shower or while sick), but a lot of times it does go down, but usually not below 100's... I think mine typically evens out about 110-130 after standing for a while. Although, when I did my TTT at Mayo (off meds) the hr just seemed to climb: supine was 90, at 1 minute it was 142, and at 7 min (I had to stop there because I felt too awful) it was at 154. My BP tends to raise (I got up to 155/98 during the TTT) while standing too, though, in the mornings, it usually runs somewhere around 80s/50s. I think the way my heart rate behaves has a lot to do with what my BP is doing at the time?

lissy, I wish I could make some suggestions for you. California is wonderful and I've lived here all my life, but it does seem to be expensive compared to the midwest (one of my friends is originally from Indiana, and what you can buy houses there for is SO cheap compared to over here!) I live in a small town, so living, housing, etc. is not too bad (not like the Bay Area anyway), but the problem here is not having a huge economy. Most people in my town either work at our one hospital, the casino, or our one WalMart lol. Unless you are in a good industry niche (my husband and I own a construction / pest control company), it can be hard to make decent wages here. We actually have a lot of people who work and live in the Bay Area who own a "cabin" up here and commute--probably not too good for POTsies though?

jpdj49, I didn't know there was anyone at Stanford, that's interesting news. (I'm Northern California from a small town and NO ONE has heard of POTS, it seems!) I was first diagnosed (with poor man's tilt test) by a cardiac specialist at Stanford, but then wasn't sure where to turn for all of the testing, etc. So I ended up going to Mayo Clinic in AZ, which I felt was super informative, helpful, etc., but Stanford would definitely be closer! How does you daughter like Dr. Safwan Jaradeh?

Yay! So glad to hear that you might have found something to help you feel better! I've been having some nausea stuff the past few days and I don't envy you at all! Hope it continues to help!

By the way, I hope you have a fantastic time! Where are you going? I went to London, the Netherlands and Belgium about 3 years ago and had the best time!

I have flown a few times since POTS entered my life (my husband and I are big on traveling). I find the things that help me are being really hydrated, salt loading, and compression socks. Even at that, I feel kind of a constant queasiness during the flight, which isn't very fun, but it's definitely tolerable. I just try to bring a really good book so I can keep my mind on that instead! lol I find that I'm usually tired afterwards, but the sick feeling goes away within a half hour of landing for me.

Wish I could help... I work from home, but my husband and I have a home office for our construction/pest control business, so that just happened to work out for me. I was thinking maybe you could do some tutoring or something, like for anatomy or physiology students, or nursing program students. It might not be full time work, but maybe can bring in some extra money?

Low iron (off and on throughout my life) Low potassium (when I first got sick, normal now) Low sodium (low end of normal now) High C02 levels (when I first got sick) positive TTT (off meds) high standing NE levels

It seems like there have been quite a few people on here that have similar issues. I was having this problem all the time a couple months ago, but it has mostly gone away now. I have no idea what caused it or what helped it go away. I did change my dosage times for taking my beta blocker, so maybe this helped? Wish I could offer some suggestions! This is definitely not a fun thing to deal with Hope you start getting some sleep soon!

bebe127 (and Leigh8), I seem to be like you. As long as I really hydrate before hand and during, and don't overdo it, a glass or two of wine works for me. I cannot tolerate hard alcohol anymore, especiallly Tequilla, but that doesn't really bother me; I was never a big drinker of that kind of stuff anyway. I would be very sad to do away with wine, though! lol Coffee also doesn't have too much of an adverse affect on me, as long as I don't have too much in succession without eating. I used to drink a ton of coffee, but can't quite do that anymore. I actually do a cup in the morning to help give myself a boost (I get pretty low BP when I first get up) and that actually seems to help for some reason. Not totally sure why? Aside from that, I will have maybe another cup or two later in the afternoon if I'm at a coffee shop (I'm a writer, so this is a common haunt of mine lol). shan1212, it did take me about 6 months after I first got sick to even try; honestly, I was feeling so lousy at that time I didn't even want any lol. Once I got on a beta blocker and started feeling better, I asked my doctors and they all said that it wouldn't affect my meds, so it just was all dependant on how it made me feel. I gave it a try, just a tiny bit here and there, and it seemed to go okay.

Hi to Altruism and Joann, The doctors still aren't sure exactly what caused this for me. We think it may have been a virus, though my Mayo Clinic results indicate that I have hyper joint mobility, lots of blood pooling and a neuropathic component. My husband had fractured his back in a snowboarding accident around the same time that I got sick, and I asked Dr. Goodman if there was any way the stress of that might have factored in, but he didn't think so. I still have no idea. When I passed out twice my family made me go to the ER and they found some abnormal heart rhythms, along with the tachycardia and bizarre BP fluctuations, so I had to stay for 3 days. Over the course of that time I had very strange BMs (sorry if TMI!) and a ton of abdominal cramping, so they did think that there was a possibility that I contracted a virus while visiting my husband in the hospital with his back. Who knows? (Kind of wish I did though!) As far as what I take: I have always been borderline anemic, and was very anemic during that time. Aside from the BB, I take a multi vitamin and also an iron supplement. I also do the salt loading and high volume of liquids, which seems to help me a lot. I know that I am nowhere near the amount of salt they want me to be at (they said 10-20 grams per day!), but what I take in now is a lot for me. Growing up, my grandma (who raised me) had high blood pressure and was on a very strict, LOW sodium diet; therefore, we never used much salt and actually everything we ate was low sodium (nuts, crackers, vegetables, etc). Once I got older, I just never added salt to anything because I was used to not having it. When I got sick and found out I had POTS, my blood sodium levels (and also my potassium) were extremely low for whatever reason. Now, I probably make it anywhere from 5-8 grams daily, which is a lot of salt by my standards! I think maybe my body was starving for it and that's why it helps so much! lol I also never used to drink enough water throughout the day, and I still don't think I drink as much as the doctor would like, but a lot more than I used to, which seems to help a lot. I also have a lot of issues with low BP in the morning, so the doctor suggested I try a cup of coffee (I didn't want to be on any more medication), which as crazy as it sounds, seems to help! (My amazing husband brings it up to me every morning about half an hour before I'm ready to get up...so sweet!) As far as the Metoprolol, I got put on that after they had sent me home with a Holter monitor and the results came back so abnormal. Then I went to see a cardiac specialist at Stanford and he diagnosed me with POTs and said that BBs are sometimes used to help people with POTS so I stayed on it to see if it would help, which it did. I started out on 25mg twice a day, but I was still having a lot of symptoms and tachycardia, so a couple months in, the dosage was raised to 50mg twice a day and I have been on that ever since. I have never had many issues with medications so I think I may tolerate it extremely well... from what I have read about others on here it seems like I take a higher dose than a lot of people. I still have some issues/ symptoms, especially in the mornings or at the end of my dose when it's time to take the next one, but compared to how I used to be, I think I'm doing pretty great now! Exercise has been a little up and down for me, though sticking to it, even when it makes me feel crappy, seems to have helped almost as much as the BB. I actually started taking very short walks in the beginning. Then I worked my way up to Yoga, which has by far been the biggest help to me. I have made it to a few kickboxing classes, though much of the time that is a little too much for my poor POTsy body lol. I have also had a handful of successful snowboarding outtings (some better than others), so that was a HUGE turning point for me! I broke my foot in July, which put a little bit of a damper on the exercise, but I have been slowly coming back from that. Joann, stairs have been my nemesis from the beginning of this, lol, but I am actually to the point now where I can go up them at a normal pace, rather than crawling up them, and I do get a bit of racing heart and out of breath, but nothing like I used to feel. I think part of that is the fact that we moved our bedroom upstairs and I just had to deal with them. I think perhaps my body has (very slowly) gotten a little more used to it over time. It was a bit of a nightmare when I had to negotiate the stairs while on crutches with my broken foot, but I think that after THAT fiasco, just walking up them seems like a piece of cake now LOL! So sorry for the long post, but hopefully that helps you both and answers some of your questions

So glad they were kind to you in the ER and hope you get some answers and feel better soon!