Jump to content

sonshine456

Members
  • Posts

    48
  • Joined

  • Last visited

Everything posted by sonshine456

  1. looks like the eating and drinking is something that I need to talk to my dr about OR be sneaky about Rachel, I'll definitely give the breathing out slowly thing a try...thanks for mentioning that. If anyone else has any good suggestions for pushing that may be helpful in controlling the bp please throw them out there. I'm going to write everything down that I possibly can because I'm sure once i'm there my mind will go blank. ethansmom-i'm REALLY hoping to only have to push a few times too. There's a history of fast deliveries on my moms side so hopefully that will continue on with me. Having had two svt ablations the heart palpitations are of real concern to me too. I can't imagine what pushing will do to my heart. Hopefully if it does get screwed up it's only for a short time. Were you hooked up to a heart monitor during the labor?
  2. thank you rachel for telling me your experience. It helps to hear what you did and what you would do differently. I see my dr again on tues so hopefully they'll be able to tell me what they're thinking so I can prepare mentally for it. I'm sure I'll have more questions after that appointment. Thank you sooo much for taking the time to chat with me about this. It's just always good (well not good but i'm sure you know I mean) to hear that someone else had the same problems and concerns and how it ended up.
  3. katherine, I went through the same thing with being told I was depressed or had anxiety for a few years before I got my diagnosis. I think that's a common story for most of us here. I didn't feel like I had those issues but after being told that for so long I started wondering if I was just in denial. It's been a few years now since I've gotten established with a really great cardiologist and primary care dr. We've found the cause of all the weird symptoms I was having and they've been fixed by svt ablations and by the medication I take now for POTS so I KNOW for sure looking back with absolute certainty I was right with my gut feeling that it wasn't depression or anxiety..there was something else going on. I get really angry thinking back to those other dr's. They were the one's who made up their minds right away. ANYWAY...can you tell I have bitter feelings about that whole thing? :-) So how high did your bp get? Did that happen from the abruption or from your POTS being out of whack?
  4. wow, thank you all for your responses. This is my first pregnancy and I was diagnosed beforehand with pots and have it under control with Mestinon. They wanted me to stay on Mestinon throughout the pregnancy-they weren't concerned with me being on it. Things have been pretty good so far. Just the typical ups and downs of pots. I also have to factor in the fact that I have a very small chiari malformation (i've been told it's not a cause of concern) which is I believe the biggest issue for my anesthesiologist at the moment and he wants to play it safe and do gen. anesth. but my perinatologist doesn't want me to have a c-section because of POTS. So that's where I'm sitting. I have concerns about both options. I've done ok with gen anesthesia for procedures but i've had it for svt ablations so of course my bp is going to be screwed up after they've been messing with my heart so I don't know how I would do AFTERWARDS with that. Katherine- is your dr recommending a c-section for your next one because of your placental abruption or because of your pots? Rachel-I'm definitely most concerned with being too weak to push. If I should happen to have a bad bp drop, most times I barely have the strength to lift my hand up. And I'm also terrified of meds because I seem to be hypersensitive to them which makes me worry about the epidural. I know I've been ok with gen. anesthesia before because I've had svt ablations. That was comforting to hear that you have the same problem with medication sensitivity and were fine with it...even though I know it's going to vary from person to person..that was good to hear. My perinatologist initially said it would be best to have an epidural and let my body "labor down" and let my body do as much as it can on it's own without me pushing. The goal would be to just push as little as possible. Did you have problems with your bp when you were pushing and how many times did you have to push? How long did it take you once you got to the pushing? And also, how did they do the epidural with you? Did they spread the dosing out carefully to lower your risk of your bp dropping? trish-congratulations to you! as I just stated above, I was also told a vaginal with an epidural would be best. I'm going to try to get some more specifics about what the difference might be between recovering from a natural delivery and recovering from a c-section when it comes to a pots patient. I did have more problems in the beginning but I feel that my body just needed some time to get used to this change going on in my body. Around 29 weeks though I had a week or two of feeling amazing. I felt awake and I had energy and then about a week later I started having some of the bp problems. I think it was just a short phase and I feel like it's getting a little better now. I was told that later in the 3rd trimester is when the blood volume is highest so I'm still holding out hope to have those days again with energy and feeling awake. You can email me if you'd like and we can chat thoughout the pregnancy. It's sonshine456@yahoo.com. doctorguest-what type of interventions are you referring to in the case reports..out of curiousity? Thank you for that info on the spinal block...I can be prepared to ask questions about that now. I'm expecting a call from my anesthesiologist this week so I appreciate that info. I was also running through my mind that if an epidural wasn't going to be a good choice and obviously general anesthesia isn't what I'd like than maybe I should consider just forgoing medications and try it naturally. At the same time though I was wondering with the whole pain response thing if that would make things worse. I really appreciate your opinion on that. What you said is kind of what I figured. I just have the wheels turning with the possible different options :-) You covered a couple questions I wanted to ask without having to ask...thank you!
  5. I know there's a lot of old discussions on pregnancy and pots but I would really like to talk to others who have gone through this. I'm about 8 months pregnant. It's been going really well but now there's discussion going on between dr's as to what to do about delivery. For those of you who have had babies with pots I would appreciate chatting with you a bit. I have a number of questions but I'll start out with asking what kind of delivery you had...natural, epidural, c-section, general anesthesia? Thank you!
  6. I've been on singulair for years and it's been one of very few meds that I haven't had any problems with.
  7. I've been on mestinon for almost a year now. It really was a miracle drug for me. I had side effects big time in the beginning but they do get better. I had to play around with the dose quite a bit too. completely worth it all. I can't say enough good about it. My pots was really really bad..i was barely functioning and it brought me out of it and it's maintained its effect for me. my biggest complaint about the side effects was the twitching...which i figured out you just have to make sure you eat enough when you take it and that helped alot. My sister also tried it...she has a different grouping of symptoms than me...and it unfortunately didn't work for her.
  8. hi, I had a terrible migraine a couple years ago. The onset was awful...i became disoriented, didn't know who my husband was, didn't make sense when i was talking...very scary. I had only had 1 migraine previous to this one..i do have a low grade headache almost everyday though. Once i had this onset though I couldn't get rid of this migraine for almost 6 months. I tried a few meds but they didn't do a thing plus i was also afraid of the side effects. My dad is a chiropractor and he sent me some Petadolex and I just started using that and my headache finally went away and i haven't had another migraine since. There are medical dr's who will tell patients to take this as well because there has been proven clinical studies on it. It worked for me...it might be worth a try for you. (sorry for sounding like a commercial) If you do a search for Petadolex it will bring up a lot of sites for it. If you're interested in it I could probably get my hands on an actual article about it.
  9. We had a hewlett packard before. I want something under 200. It looks to me like the biggies you need to look at are the megapixels which I'm thinking 5 would be good for us and then definitely want to make sure it has optical zoom. Our old camera took forever to reset after you took a picture...is that how all digital cameras are?
  10. what's srl? We got our first camera for a gift so I'm not familiar with digital camera lingo :-)
  11. our digital camera just quit working. Any suggestions on what kind to be looking at for a new one?
  12. I found out a year after my POTS symptoms started that the apt I had lived in the previous year had to be completely torn apart because of the mold in the walls. INTERESTING!
  13. i get twitching a lot also. I've been told it can sometimes be from a lack in calcium so maybe try increasing your calcium intake for a while and see if that helps. I also twitched badly from being on mestinon and eating something when taking my meds helped tremendously with that.
  14. i've tried a few. My POTS got pretty bad when I tried them. Might have just been reacting with my BP med though. I was on an antiarrythmia before my POTS got bad and it definitely helped.
  15. This story made me sick and I just wanted to share it with you all. I just sat there with tears in my eyes watching it. It's amazing what humans can put other humans through. http://www.thekansascitychannel.com/news/6882159/detail.html read the previous stories also at the bottom
  16. I just had a conversation with a friend who said "man, I didn't realize it was that bad" when i mentioned in passing that i couldn't drive. This is after having had 2 ablations and being in the hospital 3 additional times for POTS stuff...which ended up being 2 months total time in the hospital within the last year and a half...and MANY days of having to crawl along the floor to get from room to room. But telling her I couldn't drive (which i haven't been able to do for years) was what made her say hmmm. I mean, what does she think has been going on here if the not being able to drive is what makes her say...hmm things must not be good. that's like the most insignificant thing to me....when you can't walk or stand up...I don't know...you would think that would sound worse to someone than not being able to drive. I guess I've found that with some people no matter how well you try to explain what's going on....they're just not going to get it. With my closer friends who don't get it at all I always try to tell them exactly how I've been feeling because I want so badly for them to understand...with the ones who do already understand or with people who are just aquaintances I just say i'm doing okay and that I have my good and bad days. I had some friends who didn't come to visit me over x-mas because "isn't she always sick" It's not like I had the flu...it's a chronic thing people! So what I'm trying to say :-).....I understand.
  17. I had been on birth control (monessa), stopped for a while, and then started back up recently and I'm having major problems with my blood pressure. It didn't seem to affect me before and maybe it's not now...maybe it's just a fluke that my bp is bad at this time so I'm wondering if any of you have had problems with this? I stopped the bc a couple days ago so we'll see if I can get back to "normal" now.
  18. I had a tingly scalp and face for months when my POTS was really bad. It wasn't until I started on mestinon that it went away.
  19. I'm sure these are different for everyone but if some of you could describe what you feel I'd appreciate it. I don't know what's going on the last few days. I have this energy or feeling coursing through my body that makes me feel like I need to lift weights or run or something. I don't think I've really experienced adrenaline surges but maybe this is what's going on with me now? My hands have tremors...which I haven't had for a long time now. something is going on. I don't think it's anxiety.
  20. YES! I had a bug that only lasted a day but it knocked me on my butt for a good 3 days before I could even get up at all because my POTS got so bad.
  21. I just wanted to post a message here to let you know that ablations can be an okay thing with POTS. I went in knowing that it wasn't going to correct the tachy caused by POTS. I was having bad tachy caused by SVT and they were able to correct it. I was sedated for about 5.5 hours and had low BP the rest of the day and through the night but the next day it gradually started going up. It has kind of been all over the place at times but overall I'm extremely happy with how well my POTS has been. I was prepared for it to be way worse than this. It's going to be a struggle for a while but I'm confident that it's going to get better. And I have one less thing to deal with because they were able to get rid of the SVT issues I was having. I know there's been a lot of bad experiences with ablations...this was in fact my 2nd one. It's actually been way better this time around as far as the POTS goes. I know it could have gone the other way easily but my dr is awesome and well educated about POTS. I also believe he was overly cautious with me because of the POTS. Just wanted to share a good ablation experience.
  22. i'm having an EP study with possible ablation on dec 2nd. I've already had one ablation and even though my pots got worse for quite a while I would go back and do it again in an instant. the tachy i was dealing with every single day got better. I now have a different area that's causing problems. It's definitely not tachy caused by POTS...I get that too of course but this tachy is very different, it even feels different and it goes a lot higher than the POTS tachy I get. We caught quite a few episodes on an event monitor. I'm nervous about it but i've tried antiarrythmia meds and those made my POTS really really bad so this is the next step.
  23. so what did they say about POTS? Because that's where i flipped to the channel and they were talking about this girl passing out which caught my attention and then they said something about POTS and then my phone rang :-) So I didn't catch what they said.
  24. I actually do have a chiari malformation but none of my dr's have felt that it was significant enough to cause any problems...including the docs at the Mayo clinic. The show does make ya think though. Thanks for posting the times. I caught the second half of it again last night. Haven't seen the first half yet.
×
×
  • Create New...