misstraci

Katybug, thanks again for writing back. I may look into the shot. So you mentioned that the others give nausea, for me too. Does the shot have any side effects for you? I tried the one called implanon where they implant it in your arm and thought i was having severe bleeding from it (this was right after the birth of my son) turns out the severe bleeding was coming from the retained placenta still inside me :0 So anyways, i had that removed and now i'm not on anything but i feel terrible with hormone fluctuations, i'm looking for something.

I'm glad your tachycardia is improving, what did you say you're doing that is causing the improvements?

tablet, thank you. I'm glad for you that it turned out not to be lyme. You're so right about it being real and underdiagnosed. katybug, thank you for writing. sorry you have/had Babesiosis and suspected Lyme. Glad things got at least a little better with that but now your POTS is acting up. Did you have POTS prior to your lyme or was it because of it you think? I appreciate you taking the time to write and explain to me, I'm going to go watch that video and check out your other link. Situations like this make me really irritated at the medical community, for not accepting certain illnesses as opposed to others, that is sort of like discriminating.

naomi.... me too. I suspect i may have it and i know i was also bitten, once and probably other. well, i'm having a hard time finding a doctor for it here where i live and like you say, testing is unreliable. i'd be willing to do the months worth of antibiotics even though i wasn't definately diagnosed, i take it in hopes that that was it even.

Do you or did you have lyme disease? Were you diagnosed on the first test or did it take multiple testings? If you took antibiotics did it heal your symptoms? Thanks Traci

yeah, Julie, I like the way you explain that!

When I first wake up and sit on the bed, I feel so funny, i'm dizzy, lightheaded and when i stand or even go from the laying to sit position, my HR feels like its beating crazy fast. I often wonder if it's just me or what...

katybug, does the depro make you feel any better?

klgpdx.......Thanks for writing! I'm going to check out your link and read up on HIIT, I've never heard of that before. I'm so glad you see improvement and that others around you can tell as well. Keep up the good work and inspiring others (like me) Thanks

Thanks for coming back to the forum! I'm happy to hear stories like yours. I wish I lived near you becuase I'd definitely take you up on the workout buddy thing. I'm so happy for you and feeling good. You make me want to keep trying and never give up. I like the way you say POTS is just a condition and that conditions improve. Thank you!!!! Traci

I mean, haha to your comment, not laughing at you, you know!

haha Jangle!

hahah sorry Rama, I'm being repetative! Thanks Katy and Naomi, I'm going to go look at the links you posted. It would make sense about the fluid retention thing.

Thanks Katybug! I like that chart, it helps show the fluctuations very well. I'm going to back and look for ya'lls thread about it. Maybe it is the estrogen. It's funny though, that it never bothered or affected me before. I guess I also never had POTS before either

I've noticed, as have others... so I hear/read, that the menstrual cycle tremendously affects their dysautonomia symptoms. I've tried to research the phases of the female cycle and I see there are these different phases that begin day 1-13 (follicular), day 13-? (ovulatory) and on and on like that. Does anyone know a lot about hormones and all this? I want to know more but I'm having trouble understanding. For example: my worst time with symptoms is during and the week after my period. As if I don't feel crappy enough, that week after, it's like crappy to the tenth power. Just curious as to why there is an increase in our symptoms, is there a specific hormone that does something or goes high or low and interferes with other stuff

POTS- postural orthostatic tachycarfdia OI- orthostatic intolerance NCS- neurocardigenic syncope NMH- neurally mediated hypotension IST- inappropriate sinus tachycardia SVT- supraventrical tachycardia PVC-premature ventricle contractions PAF- pure autonomic failure I only know what they stand for but not what each means!!!

Hi Allie. Sorry you were in the hospital but I'm glad you got more answers (I assume they were more and new). I've wondered also why i'm still lightheaded and dizzy sitting down. I'm with you about not coping well, it's been almost a full two years for me and being lightheaded every single day, i'm sick of it. So, I'm there with you!!! I hope the new meds and/or strengths help out, let us know how it goes. Traci

heis.... those were long work days, my goodness. What does cvi mean? issie.... what exactly is the sclerosing therapy? I'm glad it all worked out for you! Thanks

nowwhat..... thank you so much!!! that was a lot of informative information. thanks for typing all of that. one of the procedures you mentioned, i can't believe it cost 4k per leg, my goodness. I'm not sure if mine are genetic or not, they are more than likely from this last pregnancy that wrecked havoc on my body. I'll keep wearing my compression stockings and I stretch well, so, I'll keep that up too. Was just curious about them because I had never asked a doctor, I never really realized how bad mine were. I appreciate your time, thank. Traci

Does anyone have varicose veins? Are they harmful or indicate other illness? I just recently noticed these and googled it and it says a blood clot disorder may cause this. I was just curious what others thought. Thanks

Thanks Kim! That all makes sense. I'm glad that you sleep well and feel better during the day. I've never had a sleep study but it might be worth a try getting one. Also, I like that quote you have at the end

I'd also be interested in this information!

yeah Jangle, what do you enjoy doing? I like to play with my kids, crochet, do artsy things (paint, sew, etc). When I feel half way decent, we do things on the weekends like the park or special things like apple picking in the fall time, stuff like that. Rachel, you crochet too? Awesome!!! Does anyone else? We should bring our projects to the get together and stich and talk

thanks guys for listening and commenting. You all are so knowledagable! maybe i do hyperventilate and not even know it, hmmm. but jangle, i'm with you, that "sleep breathing" as i call it too is all even and deep (mine is at least). so when i wake up in the morning and have to sit on the edge of the bed for a while before standing up because i'm too lightheaded, i don't think that instance is from hyperventilating. this is interesting.

I may not have mentioned this but I had a new neurologist see me last month and he was very polite, it was a nice change from what I'm used to experiencing, well, although he was nice, he did not run any tests or offer any suggestions other than I should follow up with a cardiologist and if needed, he could give me a referrel to mayo or vanderbilt. I was ok with this. So today, I had an appointment with a new cardiologist (like he suggested) at, what I believe to be the best medical facility in Atlanta and probably the best doctors we have to offer. The man was nice, don't get me wrong, but he blatantly said, he could not help. Said he wasn't sure if it was even POTS or not, but he knew that he couldn't help me. He did however say this......... he did the stethascope and asked me to breathe as deeply as i could and he didn't stop me, just kept listening. so after about ten humongous breathes, i was very dizzy and lightheaded and i told him so. He stopped me and asked if this is what it feels like when i feel "dizzy" as i had explained to him earlier. I said yes. He then proceeded to tell me that he thinks I may actaully have what's called hyperventalation syndrome I almost laughed. Not because his theory was terrible, it could possibly explain why someone who takes hugely deep breaths gets lightheaded but it can't explain why i have felt like death 24/7 for the past two years. I'm sorry but no. Has anyone ever been "diagnosed" with this one?! It was a first for me.