seb10

Thanks so much for the response guys -- I had another short bout of that today and it's just really disconcerting because I'm not entirely sure what's going on. It makes sense tho, with the ANS controlling digestion, that sometimes my body just might have trouble with stuff. In addition, I live in a climate where it's freezing one day and then 70+ degrees the next, so maybe my body is having trouble adjusting to the temp fluctuations. Thanks again all, this certainly helps ease some concerns for the time being. I'll be sure to read up some more on everything! Be well! Sarah

Hey All, Lately, every few weeks or so, I get moments where I feel incredibly queasy and either throw up a number of times or dry heave. Fairly soon afterwards, I feel OK -- so it doesn't seem like a stomach bug or anything. But I feel awful before, during, and after. This is all new to me and I wanted to see if this is POTS related or if anyone else experiences this? Thanks all, be well.

800+ members everyone! Keep it going! And Ramakentesh, I have those crashes everyday. I've been taking ginseng consistently but I haven't seen any major difference unfortunately. Guess I have to just keep trying!

Almost to 500 members!!!

Thanks everyone!!!

Hi All! Thanks for all the responses, information, and encouragement! You guys are wonderful!!! xoxo, Sarah

Hey all! The past 3 or 4 days I've been having some heart pains on and off. I guess not really pains, but a bit of discomfort. And little twinges every now and again, like the muscles in my heart are stretching or something like that. Do any of you get this? I just figured it was a symptom of POTS, but since it's been going on for a couple days I wanted to double check! Thanks! Sarah

Hey Everyone, I know this is an uncomfortable subject, and one I can't find information on anywhere due either to a) not being related to one another or the silence of a disease like anorexia, bulimia, EDNOS, etc. I am currently fully recovered from anorexia after about a 12 year-long battle. Lots and LOTS of work. But I'm pretty certain that the damage I did to my body during that time is what caused me to develop POTS. I know many people develop it due to pregnancy, the flu, etc. But I was wondering if anyone else has had to deal with an eating disorder and thinks that might be the reason it came around? I think there could be a possible link -- and something else that should be made known regarding eating disorders. Ok, thanks all! Take care!!! Sarah

We're above 400 members everyone! This is great!!!

We're almost at 350 members everyone! This is incredible! Thank you all for your help!!!

Effexor caused me to not have any REM sleep for an entire year. In addition, it was the only anti-depressant that I've had difficulty coming off of. The withdrawl was horrible (whenever I moved my head it sounded, and felt like, sheet metal being hit with a hammer). I, personally, will never touch it again.

Its always hard to tell because they never seem to be able to do anything. And then I just feel dumb. But I've been having palpitation, fluttering heart with trouble breathing?

I drink G2, but now I'm concerned that it's bad for me? It does help me, but I don't want to overload on sugar. And where does one get this magical coconut juice?!

Hi all! So, my doc and I have been working on getting me up and about. I've steadily been improving, but I'm still having terrible trouble right after getting up. I know this is pretty common, but do we know why? Its just gotten really irritating, because it feels like my day doesn't start until I'm done napping, which sometimes lasts hours. Are there any suggestions or things that have helped? Sleeping with your head propped on some pillows? Wearing compression hoses to bed? Any insight into what exactly causes the "crash" after waking, and things that could help, would be much appreciated! Be well everyone! Sarah

We're almost at 200 members! This is great everyone! Thanks! http://apps.facebook.com/causes/126993?m=b...iter_id=2541827

Hey all, I spent about a month trying to find a HRM that would give a continuous HR without having to wear a band. I looked eeeeeeeeeeverywhere and couldn't find any like that. If they didn't have a band you'd have to hold down a button for so long to get a reading, and if it did have a continuous reading they required wearing a band. Anyway, I have gotten both kinds of HRM and found that I like the continuous reading/band more. I thought it would be really annoying wearing it, but it sits just below my bra so it almost feels like a part of it. Every now and again I have to adjust it slightly, but not very often. It just is way more convenient because at any time I can just glance at my watch and see what my heart was doing. With the no band/press-button-for-5-seconds type of HRM it was just a pain in the behind. Sometimes it wouldn't register my HR no matter how long I held the button down. And by the time it finally did, it was minutes after I actually wanted to check it. So I returned that one. SO, short-story long (haha!), I found the continuous monitor with the band to be way less of a hassle. Hope this helps! Sarah

Hi All! I've created a "Causes" page on facebook.com. All donations go to dinet.org because it's such a wonderful website that really helped me discover what I was dealing with! http://apps.facebook.com/causes/126993?m=4...iter_id=2541827 Please join and help raise awareness, as well as providing another place for support! (Also, please feel free to let me know how you think it could be improved as well!) Thanks! Sarah

This happens to my feet every now and again. It just feels like the blood isn't circulating through there enough and makes it tingly/numb-like.

Thought this was a good post to bring back! 1. Sarah 2. 23 3. POTS, hypersomnia, CFS 4. Diagnosed June 08, showed symptoms since 2005ish 5. Colorado 6. Completely incapacitated. Sleep 20 hrs/day -- stuck in bed for 2 years. Brain fog/memory loss. Unable to regulate body temperature. Haaaate it. It stunk! 7. A little sleepy, but up and moving! Still have trouble with temp regulation and forgetfullness, but loads better. I almost have a regular sleep pattern now! Yay! 8. Yaz -- BCP containing diuretic. Midodrine w/o Meteprolol -- felt exhausted. Vitex for hormone regulation. 9. Meteprolol, Midodrine, Klonopin. And, it's not a med, but GATORADE!

Hey ya'll, I really appreciate your responses! I feel a lot better about things and like I have a better handle on what route I think I should take next. Thanks so much again! Be well!!!

I get pains/cramps around the left chest area as well. I usually just attribute it to POTS and it works itself out. If you start feeling numb or tingly on one side of your body, you should probably call 911 -- that's a sign of a heart attack (as I'm sure you're aware!) Be well!

I get this in my arms all the time! It feels exactly as you described, like I can actually feel the blood moving in and out of the limbs. Such an odd sensation!

Hi All! Thanks SO much for the responses. It did finally clear up, and I have an appointment with my doc this week, so I'll definitely bring it up. I hope you all are well!!! Sarah

Hi guys, I'm experiencing something I've never dealt with before. It is almost like when you look directly into a bright light and have that little glow in your vision afterwards, except mine isn't going away. And I didn't look into any bright lights. I don't have a headache or anything, but I'm kind of freaked out. I don't know if I should head home from work or what. Has anyone else experienced this? Thanks! Sarah

Hey Everyone, So sorry to bring up a beaten to death topic. I've been reading all the posts I can regarding BCP and trying to gather as much information as possible. But I'm really having trouble deciding what route to take on this, so I'd appreciate any help you all can give me. You guys are great! Anyhoo, here are some questions/concerns that I have. I'm planning on asking my OBGYN as well, but -- as you all have probably experienced -- she's not very "knowledgeable" in POTS! 1. I've heard the synthetic hormones in BCP can actually mess up your hormone function even more in the long run. Does anyone know if this is true? This is the main reason why I've been holding off on trying BCP again because I've heard they're bad for you. ? 2. I used to take Yaz but went off them while trying to figure out what was going on (later discovered it was POTS of course). I read somewhere that Yaz is actually a diuretic. Are all BCP diuretics or just Yasmin and Yaz? 3. Since BCP can cause blood clots, am I at higher risk since I take Midodrine 4. Lastly, other than the depro shots (I don't think my body would handle those well), what BCPs have you found that have helped you? Sorry about the long, point-by-point post. I've just really been struggling with this for a while now. I've been taking Vitex as a natural supplement, hoping it would help but it doesn't seem to be working. And I'd just like to gather as much info as possible before making the choice. Sorry again. Thanks for all your patience on this guys! I hope you all are well!!! Sarah