MommytoSJEA

Do any of you wear compression stockings? Does it help? For those that dont...why not? Just curious. I was scripted for them but never went and got them. I just dont think they will feel nice. And my hubby says I could come up to him in the stocking and a bow and he will say No thanks LOL Just wondering what the general take is on them. ~Kelli

They just called back and said to drop it down to .05mg only once a day and to see if that helps. So I guess we will see. ~Kelli

I need to excersize! But it hurts my chest so much. I know that when I went to do a stress test once they told me my target HR was 140 bpm. LOL I was 145 with in less then 1 min into the test. They stood next to me with the paddles for the duration of the test. Made me feel nice and secure Just standing my HR goes into the 120s, if I stand and talk 130s, if I actually move 140s, and heaven forbid I actually like take a walk with my kids (which anyone around little child know is at a snail's pace) its in the 170s. I don't know what would be "safe" to do for excersize. ~Kelli

HI there. I have had 2 ablasions in the past. The first one helped a lot. I no longer get HR in the 200, which is nice, I felt better then I had in a long time. I did not need any meds either. But after about 8 months, it started to come back. Fast heart rate, and arthymias. They decided to do it again. The second one didn't really help at all, and then I had a sinus node modification done. BAD BAD. I have had nothing but problems since. Everything has gotton worse. I did not have a POTS dx then though. For while there was talk of putting a pacer in, but he refuses now, saying it would help my HR but not the rest of the POTS issues. If you want to know more about the ablasions and such feel free to message me. Good luck with whatever you decide. ~Kelli

Thanks Flop, I will! Even her secretary seemed to have more knowledge then my EP ~Kelli

Flop I would totally take the pill even if it only to make that darn cycles go away. The depo shot was the best thing on earth when I took it yrs and yrsa ago. Although I gained a TON of weight on it. Yeah hoping it was a fluke, even though doc did confirm when I called that its common. Huh oh well. Only the wierd happens at our house. ~Kelli

1. FATIGUE- It really depends on what kind of fatigue and how much. Most of my meds make me tired. If its I cant get my butt out of bed tired, then NO. But if its im soooo tired, then yeah i can deal with it. 2. GASTRO-DISTURBANCES-Again really depends how much. One med I was on, the nausea was so bad I never knew if the next time I opened my mouth to speak, if I was going to vomit all over the person in front of me. NOT COOL! Come and go symptoms wouldn't bother me as much 3. MENTAL CONFUSION- I hate to be confused. About 6 mo ago I was on a trio of meds that when taken at the same time, it literally made me stupid. I couldn't hold a full conversation. You now the Adam Sandler movie 50 First Dates, the guy who can't remeber more then 7 seconds, yeah that was me. That was a no go in my book. Just too much! If its the typical foggy headedness that we are all so fond of, then I can handle that in small portions. Makes for a fun day. 4. AGITATION- Ummm....I don't thing I've ever been on a med that has made me agitated. I guess my family would not like that too much. So it depends how bad it got. If it was some mood swings, I could always pass it off as a woman thing 5. LOSS OF SENSE OF HUMOR, MILD DEPRESSION -The mild depression I can handle. Been there done that. But a sense of humor is a must. Humor is how we deal with all the day to day crap that comes along with all the health problems in this house ( I doubt I have ever mentioned but my 8yr old son has Crohn's Disease), so we try to find the humor in everthing. Makes things easier to deal with. ~Kelli

Sara good for you for saying something. Its not their job to question who needs a sticker and who doesnt. Maybe his 2 day suspension will give him time to think about what an insensitive jerk he was ~Kelli

I'm on day 9 of this med and the side effects are still killing me even with the lowered dose. I actually have a call in to the doc right now...awaiting thier call back. Last night I was sitting on the couch, hadn't moved in like 20-30 min, and I felt horrible, like I was going to pass out, my whole body was tingley numb. I had been kinda feeling like that on and off all day, but when I stood up I felt better. Totally backwards right?? Well I asked my hubby to grab BP monitor and it was 142/101 Which for me is rediculously high. Im usually like 102/80ish I was supposed to take my meds again at that time, but I waited a little bit. It went down to 126/89 within an hr and I took my meds. and then went to sleep. Woke up feeling better. I hate this med so far. BUT I'm willing to stick with all the bull crap side effects to give it the time it needs to see if it actually helps. So far I think no, but I know it takes awhile to get the desired results. Erik how long did it take you to start to feel better on the meds. Not just loss of side effects, but actually the wow I feel better feeling? ~Kelli

Glad to be of service Dizzyde! IM not liking the med too much myself right now, but I'm willing to give it the time it needs to get in my system and start working properly. Right now I think its just all side effects. Time will tell I guess ~Kelli

I do love a good bath And now that I have a POTS dx, I finally understand why I feel like im going to die when Im in the shower. I like my showers hot hot hot. But I always feel like im on the verge of literal death, chest pain, nausea, short of breath, and the worst dizziness I have ever felt. Never had a problem in the tub though. ~Kelli

my monitor gives me an error when I take it standing half the time too. Especially when im super tachy. Wasnt sure why. Glad im not the only one ~Kelli

i did call the doc on friday and talked to a nurse and she said that it would/could change my cycles. I seriously doubt it was m/c or anything like that since I had my tubes tied. Although.....the way medical anomolies(sp?) run in this house....lol I would be the .001% failure rate. The doc says right before my tubal "ive never had a failure" yup...thanks. We just figured it would happen to us....but when our youngest is 18 (b/c we will only be 41 then) ~Kelli

I have been taking the florinef for a tad over a week now. I saw one of the side effects is menstral changes. So, of course, it happens to me and my cycle comes after only 2 wks. Fine whatever. But the cramping is the worst ever. It woke me out of a sound sleep 2 nights ago. For those of you that have had children, it seriously felt like labor pains. I was sitting up in the bathroom saying holy crap....this is like straight out of an episode of I didnt even know I was pregnant. Anyone else have cycle problems? Just FYI, I dont take any BCP b/c I had a tubal ligation done when I was 23 b/c that wonderful EP I see says it was in my best heart health interest to not have any more children Granted I do already have 4 wonderful children and we prob would have been done having children anyways........but thats a whole nother rant on it own. Like I said just wondering......Ive never had much more then the typical period cramps. ~Kelli

I have 4 tattoos. One on my lower back of 7 dasies, a butterfly on my pelvic bone (yeah that looked great during pg...lol) UNDER the butterfly is a heart that had to be covered up , and I have the sacred heart on my left outer thigh. I would LOVE to have angel wings done on my back. My hubby HATES my tattoos though. You cant see any of them unless I show you, but he deems them trashy on women. ah well...I like them They are addicting ~Kelli

I have noticed that I get a little short of breath and my HR goes up. I think it's from sitting still for so long. Also my screen is pretty much eye level, but I do have to tily my head up just a tad. I think the breathing is what makes me get dizzy. If I'm watching somehting on the computer, then I recline back in the chair and put my feet up and turn the screen and I have no problem. But if i'm actually doing something on here then I have to be sitting upright. ~Kelli

Some people are just plain rude! Im glad you got to have a great time with your sister. Thats all that matters. I have had that experience with the wheelchair before but it wasnt due to POTS. I was pg with my 3rd child and I was on complete bedrest. Well I got this bug in me to knit a baby blanket ( I didn't even know how to knit!!) and I made my mother take me to Wal-mart to get yarn. I used one of the motorized chairs, and only being 6 mo pg did not have a big baby belly, and people were just statring and shaking thier heads. Ignorant people. ~Kelli

Almost sounds like you and I have the same EP....lol! Except mine put me on .1mg 2xs a day and said see you in 6wks! ~Kelli

Thankful posted some DR's that specialize in POTS when I first posted a few days ago and there was one actually near me. Like only 20 minutes away. So I called today and I have an appointment with DR. Svetlana Blitshteyn on Jan 5! Im actually really excited. Prob one of the first times i've ever been excited to see a doctor. On a crappy side note....I called Cleveland clinic to get copies of my tests and the wanted me to PICK THEM UP! IM 4 hrs away! So we settled for faxing them to the Doc but I still have to fax them consent. Now my crappy electro's office said sure I can come pick up all my records (Dr. Blitshteyn's office said they want everything I have ever had done). I have 7 yrs of testing and junk done. So like I said they said sure you can come get it, to the tune of 75 cents a page Holy crap!! I was like do you have any clue what that would cost?!?!?!?!?!?! Shes says I'm sorry. Thats the rules. She can fax them to the new doc for free but if I want MY OWN records I have to pay for them. GRRRRRR Not happy. ~Kelli

I get up at 8am to get the kids ready for school. They leave at 9am. Sometimes I drive them sometimes the neighbor does. Depends how I feel. Sometimes I don't dare get behind the wheel of a car in the AM. After they leave I clean up the toys laying around and then I get on the computer to do whatever it is I need to do that day. I usually need to nap by 1pm at the latest. (I get back up at 3-3:30p when the kids come home) ON thursdays I work in the AM and it kicks my behind. Most of the rest of the week I work nights and as long as im on my butt a good chunk of the day I can manage at work. WOrk is hard for me because Im on my feet most of the time, but since I'm a manager I can sit whenever I want. They are pretty understanding. On week nights I get home around 11:45p and on weekends 12:45a. As long as I can come home and recline at night mentally I feel pretty good. Potsy like crazy, but pretty good at the same time if you know what I mean. ~Kelli

For the blood volume test, I was injected with a small amount of radioactive isotope. ANd then blood was drawn at regular intervals to determine if the amount of blood in my body is appropriate for gender, height, and weight. I also had a Hemodynamic test done at the same time and for that they injected another radioactive isotope 3 xs and they take images with the gamma camera to measure the function of the heart, and circulation of the blood flow and the volume of it. ~Kelli

I have noticed that many people see many differnt kind of docs. I was just wondering who everyone sees. By who I mean like a regular cardio, an electro, and endo, ect. I figure that since Im going to jump head first into this now that I have a dx, Im going to try not to drown while doing it. B/c as some you may have noticed, my Electro *****! Most if not all of these tests that everyone talks about...even simple blood work, I have not had done. Actually I think the only POTS related test I have had done was a TTT. oh wait, and I had a blood volume done. Which was deemed low blood volume. So..........I just want to be armed with the best info I can when I go to my electro on Jan 12 and tell him where to shove it Im not very happy with him right now! ~Kelli

I have noticed the same thing! I always thought it was crazy. I am a mess by the time I get to the top of the stairs, even if its just a short flight. My HR is racing, i feel like I cant breathe. I feel like I need to just sit down or lay down but I feel worse if I do that. Instead I noticed that if I kinda just slow down for a minute but not actually STOP It helps me to feel better quicker. ALways wondered why. ~Kelli

Thanks Flop! My doc has never ordered a 24-hr urine. Why am I not surprised. ~Kelli

Even before i started taking this darn Florinef, I always got headaches. I even got migraines quite often. Saw a neuro for a bit for them too. I just figured it was "me". ~Kelli