misstraci

Thank you both. I think it's a little of both. I'm still not well. I have good days and bad days and some good days turn into bad days and as you know ,you just never know, moment to moment how you're going to feel. A lot of it may be the insecurity with not having driven in a while and the anxiety of it.

Thank you, I will keep you posted, hopefully with good news and improvement!

Hello everyone! I haven't been on for quite a long time and to make a long and painful story short, my boyfriend of 11 years and father of my children broke up with me and left. I had to get a car as there were no other options. This is very recent and I have only driven a few times. He is still helping out with the kids and trying to make my transition back to driving as easy as possible.

I have been sick with POTS (and/or whatever, they don't know) since my son was born five years ago. I havent' driven in over three years now. It has been very scary and difficult to say the least.

I want to know what makes driving less stressful for you? Do you get dizzy and lightheaded in the car? What makes it more manageable?

Any advice is welcome. thanks

I'm so sorry for your loss and for your medical issues you're going through. Thinking of you and wishing you well.

good news, yay! but, what do they say the cyst means? Is it normal? causing symptoms for you?

Andy, I don't have any suggestions of what next but I wanted to say great job on exercising and getting stronger with some improvements, that's awesome!!! Glad you have been able to do a few things with friends/girlfriend.

Congratulations!!!

All the symptoms you described sound like normal for anyone early on or even throughout a pregnancy. Good luck, hopefully as hormones level out, your symptoms will also subside. I personally don't think that your school schedule and load would harm the baby. I was so scared through my pregnancies to bend certain ways, lift my hands above my head, silly stuff. I was so scared of hurting the baby or miscarrying. My mom and doctor both reminded me how resilient our bodies are and how they were designed that way. Way back in the day when women worked all day on the farm doing physical and stressful jobs everything was ok.

Best of luck to you!

^{I'm a little late. Hope your appointment went well!!}

oh man, I think this all the time. I am so scared of having something terrible happen; heart attack, stroke, you name it, and not getting help soon enough or at all because I write it off as just my 'normal symptoms'. I wish there were a way to get definative answers and fix the root of our individual problems. This PoTs thing is so hard, both mentally and physically.

Hi Courtney, I'm sorry to read about the troubles you're having, don't be scared though. I know that's easier said than done. I have pregnancy induced pots. I had my son four years ago and from issues following the birth (long story-hemmoraging-surgery-etc) it came on after that. In the beginning I was obviously terrified (not that I'm not scared anymore because I am) but I would hop from doctor to doctor and was in the ER many, many times with similar scary symptoms as yours. I'm not sure if I got mentally stronger to deal with them or if the symptoms got vaguely better but I feel slight improvement. When my period comes around, actually about 10 days prior, i feel like death and I say that only half joking, my heart feels like it could explode, palpitations, lightheadedness, seizury-head feeling, all these things that I normally have are so much worse during hormonal times.

I doubt things will decline over time, if anything, they will improve!!!! there will be little things you learn you can do that may help you feel better. There may be some things you can change in your lifestyle (gluten free, exercise or whatever) that may give improvements too. It's hard to say, try not to focus on pots/health, when that is your life, day in and day out, feeling cruddy, it's kind of all you can think of, I know that personally, but for a while, I quit coming on the forum, i feel like it actually made me feel worse to come on here. (yet it also makes me feel better too, to hear others going through the same thing) but what I'm getting at is that, when i quit focusing all my energy onto my sickness, i felt better. a little but that was better than nothing for me.

I hope you feel better soon and find some good answers and help for your symptoms!!!!

haha no worries Stephsurf, post as much as you like, I like the responses! I'm sorry you're also feeling so bad. What exactly is LPR and how does it differ from typical acid reflux? Maybe you should give the medicine another try, assuming it's ok with your dr, and see if it helps this time around. As far as the stomach issue being a separate issue or falling under pots. hmmm, that is hard because so many people with pots also have gi issues. the gi issues fall under the autonomic dysfunction, etc. I had stomach issues before I was diagnosed with pots but then you ask yourself, well, did i just have pots all along and not know and it all got worse and then i realized or were those stomach issues something different altogether. I had a lot of nausea for years and it turned out to be my gallbladder was broke and they removed it. I think i'm going to try to cut out dairy and/or gluten and see if that helps me any. Good luck to you too, I hope you feel better!

ALSO....... do you notice an even more slowing of your digestion prior to your menstrual cycle (females)? The past several months it's almost as if I have a full on stomach virus, I feel so terrible.

I was never officially diagnosed with gastroparesis but I'm almost certain I have it. I had an upper gi which showed hiatal hernia, peptic ulcer, reflux, and sitting "liquid" in my stomach that the doctor ordered a delayed emptying test for. I couldn't take the test because you had to eat either beef or eggs w/ the radioactive and I don't eat either.

My current symptoms seem to be getting worse. Nausea and bloating are my most uncomfortable symptoms that I am experiencing. I burp, A LOT. It's really gross. But the bloating is awful. I can eat barely anything and feel full for hours. Even a glass of water feels terrible. Everything 'sits so heavy' as I call it.

Any suggestions, tips, diet changes that seem to help you with bloating and nausea??

thank you

Alison...... are you still on your healthy eating plan? still feeling good and all going well?

Any suggestions from you or anyone else, for me, someone who wants and knows that a different diet could potentially help but just can't seem to get on it???

I am and have been a vegetarian for about 10+ years. I know that excluding dairy and gluten could potentially help me a lot and I have a major problem with chocolate. If addiction is such a thing, I have it times ten I'm sure teh sugar load and caffeine are also not helping feel any better. In my mind I want to do better but when it comes down to it, I'll do it for a day or two and be so depressed that i go back to eating whatever I want again. It's a cycle.

Any advice???

My vitamin b12 and d are both low. the D is very low. I was prescribed the once a week pill at 50,000iu but never took it. instead I decided to try to be out in the sun more and took an over the counter 1,000 or 2,000 vitamin instead. I always read up on medicines/vitamins prior to taking them and i read nothing but negative things about such a high dose of D. I can't tell a difference in how I feel since starting the lower doses of vitamin D and have not been back for a level check either. I was also on b12 shots that I gave myself at home. I honestly could never tell a difference with those as far as how I felt. I am currently not on the shots anymore.

Hope you feel better!

Hope you feel better!

Hi Andy. I get that too. didn't know it was PVC, I didn't have a name to put with it but when I'm working out this happens to me too. Also, it happens when I'm not working out. If I inhale sometimes, I get what I call skips, palpitations, drops, stops, It's hard to explain. Everytime I've ever worn a holter monitor nothing major ever happens during that 24hr period. I should do a more extended monitor to catch all these "palpitations" i'm having. I don't know about you guys, but they scare me quite a bit! Also, if I stretch really big, arms over my head and all that, when I come out of the stretch back to normal it's almost like a really long pause in my heart and it has to refill with blood before I can continue. do you get that?

Thank you little blue jay.....How ironic...... you were just reading about this same topic, that's cool! Thank you for posting and writing out all this information, it was very informative. I still have trouble understanding some of it though. Interesting facts indeed. I just need to go back and re-read to understand more.

Thank you and I love going to goodwill too!

I tried to go back through older posts and read what was there first but it was a lot of reading. Basically, I know I've heard this term here on our boards quite a bit. I was doing some research on why I feel really nauseated and sick right before my period and it mentioned prostaglandins were to blame.

Can anyone explain to me, in regards to dysautonomia and pots, what these prostaglandins are and do? Something MCAS related?

Thank you

Happy belated Birthday!!! It sounds like your symptoms are under control for the most part and the pregnancy itself would probably not hurt but help with the increased volume. Continuing to eat right and exercise will also both be positive habits for your pregnancy. I didn't have any suggestions or first hand experience or know anything about your meds and all that, I just wanted to say good luck and if this is what you and your family want, then go for it. Each of us are different, you never know how it's going to be until you try it yourself!

I have two kids but didn't have pots until after my second, I think I developed it because of issues I had following the delivery.

Good luck!!!!

Wow, thanks everyone for all the replies.. I think we can make a unanimous decision that this condition stinks! I'm sorry that so many of us are unable to drive but I'm happy for the those who still do have a bit of independence. That's the biggest hang up I continue to have with the no driving (I haven't driven in several years now) is that I feel so dependant on others. No one ever says negative things towards me about it but I'm sure I can be a "problem" at times. When schedules clash, etc. I unknowingly had let my drivers license expire (never using it, not looking at it, haha) well, I finally got it renewed and I've had a lot better days and really have the urge to try driving again but now my car has sat up so long; 1. it's dead from battery/starter 2. moisture got in and its' full of mold. I'm not certain I COULD drive but I definitely want to TRY!! An issue besides feeling lightheaded I used to have and still do as a passenger is possibly my eyes and the lines coming towards me. I get a really weird sensation with the motion, lines, things passing by, etc.

Hi Looneymom. not with intention to do so b/c of our diet but b/c this is what the farmers market sells, we buy this one

http://www.san-j.com/tamari.asp

it happens to be both gluten and msg free. Hope that you can find some near you!

PS.. it's at the farmers market but I've seen it at Kroger (Ralphs?) too.

I get what you described and recently I've gotten some "palpitations" that are concerning me as well. Most of them never actually physically hurt but only feel weird and concerning but lately I've had them periodically and they actually physically hurt. Has anyone else experienced those?

Andybonse..... how can you personally tell the difference between pvs's and pac's, just curious, I thought maybe I could learn to tell the difference too.

thanks

I didn't acquire pots during pregnancy but after delivery. That was almost 4 yrs ago now. I still feel terrible BUT I have hope that things will eventually get better. I Just got to figure it all out!!!

Did yours begin during pregnancy? How long have you been not well? I hope we all find some answers that will work best for each of us.

Good luck, hope it goes well, let us know!!!!!

Hello everyone.

I just had a yearly physical last week. my D is a 19 and something on there said <4. Not sure I read it correctly but they called in the D2 50,000iu. I am VERY hesitant to take this supplement.... I am willing to try, in hopes that something, anything, will help me to feel better but I've heard terror stories of feeling sick from such high dose of the vitamin. I already take a really good raw, whole foods vitamin with 1,000D but apparently that isn't helping any. I do not eat meat or fish, not sure what other foods could supply D. I am indoors all day, so, being in the sun is hard, I'm not opposed, just not able.

Anyways, I just wanted to jump in and say that I am also in the Low-D club