maryfw

Oh yeah. After I almost passed out on Wed night............I crashed and slept really hard. My legs felt like jello and I got really cold and starting shivering. Then when I got home I got in bed with the TV blaring and the lights on. I am ususally a light sleeper but I was so exhausted from the episode that I slept like that till 5am. I normally wake every few hours with the slightest of noices. So I know that my body really crashed. mary

I finally got to see my cardiologist (well the nurse practitioner) yesterday. I had a really bad night on Wed night and almost passed out at church. Stayed home and then went to my doc on Thursday. I am actually happy that I was having such a bad day because my doc got to see some of it. This was the first time that I had my BP checked "orthostatically". Lying down it was 130/80 but standing it dropped 22 points. My doc said it was still to big of a drop and is increasing my meds. As for the discussion about what caused my pots. My doc and I agree that I have probably had this all my life. Just born with it. Doc said that birth control pills were a good idea but that she could not prescribe them that I needed to go to my GYN. I will see my GYN next week. My symptoms get much worse pre-menstual and menstrual. Fewer periods!!!! Yes!!! My doc said that if I am still having symptoms with the increase to 10mg of midodrine (which is about the max) 3 times a day then they will consider putting me on a beta blocker. Since my bp is low already they dont want to put me on a BB unless they have to. So I will keep my fingers crossed that this works but at least I feel like they are finally listening to me and not just blowing me off. Have a good day all. mary

Happy Birthday!!! mary

Happy Birthday Dari!! mary

Happy Birthday Mrs B. mary

i also went into labor at 28 weeks with both of my children. Wonder if the POTS/dehydration could have triggered that? mary

Ok. What about "I think I have had this all my life". I know that I have had it since 15 with no reasons as to why but probably have had it all my life. When I was 2 years old I was in a coma for 4 days near death because of severe dehydration. Maybe that was it. Who knows???? mary

i see my cardiologist next Thursday so I will ask how tachy I got. I am only on Midodrine now and was asking for something more so that is why the doc did the 30 day monitor. I used to be on Paxil for other reasons and dont like the way it makes me feel. Hopefully she will try me on a beta blocker. When I was 15 (24 yrs ago) my cardiologist thought I had MVP and put me on a beta blocker. My mother reminded me the other day that my symptoms were much better while I was taking that. I had forgotten that I used to take a BB. Say a prayer for me that my doc will listen to me. My concern is that my doc will blow me off again. If so, then I will go back to my primary and demand a transfer. thank you ALL so much for your answers.........it really helps talking with those who have experience at this. I am nearing my monthly cycle and have been Tachy for 3 days now. I also want to ask her to put me on birth control so that I can skip my periods...........that in itself might help tremendously. My husband is a minister and he was out of town last night. The person who was to teach the adult bible study got sick. So I ended up having to teach. I was tachy but sat on a stool and used a head microphone to help me project. God was gave me the grace to do it or otherwise it would have been to much for me to do while feeling tachy. But afterwards I was definitely tachy. I am so thankful for Gods grace. mary

I just got the results from my 30 day event monitor and the doc said it did show some Sinus Tach but no arrythmias. So I see my doc next week. Hope she will give me something for the sinus Tach..............what do any of you take for that? mary

He is a fairly healthy kid all in all. He has had Mono this year and then the high bp and the NCS just makes him dizzy and he is like me he has only completely passed out once. We just come REALLY close. No I dont fell guilty. I would if he were much worse. He does get sick after almost every meal and has lost weight. They are sending him to a gastro doctor but that is probably a NCS thing too. I may want my primary card doc to try him on a beta blocker to help his bp and the ncs. As for how does High BP work with NCS ... I have NO CLUE. Maybe Doctor Guest could help us understand that one but a few months ago I mentioned here on the forum that my son has high BP even though he is 6-2 and weighs 150 and several people responded that it could be NCS Or POTS...........Since no TTT was done I guess it could be POTS as easily as NCS. I am still fairly newly diagnosed myself so I dont know. I go for a 1st followup with my cardiologist next week myself so maybe my doc can answer some more questions for me. Thanks and we are both taking it in stride. Again, I count my blessings because it could be much worse...earlier this year they thought he had Hepatitis and that gave us a big scare mary

What kind of doctor would you see for a seizure disorder? mary

I took my son today to a cardiologist for his first time today and he was diagnosed with NCS like I have. My son is 17 so they will not/could not get a TTT on him in our town. But he has all the classic symptoms and since I have it, the doc just agreed to the diagnosis. My son has high bp and is on Lisinopril for that so the doctor is not recommending any treatment other than Lots of Water and Gatorade...No Caffeine, etc, etc. Also the cardiologist did and ekg and is ordering an echo but really does not want to see him again since it is not a cardiology problem. I guess in the future I could ask my primary doc to try him on a Beta Blocker and that might take care of both the high bp and the NCS. Being a normal 17 year old I hope he will listen and get off the caffeine but at this age there is not much else I can do because he goes to school and has a part time job after school. Dont think I would have actually listened at his age either. I was diagnosed this year and have given up all caffeine (except chocolate and I will go to the grave eating that!!) and drink gatorade and water ALL DAY long. So I guess my son got my NCS and Bad Eye Sight but he also got my good looks.............that has to count for something. Have a good day all. mary

yep. Never was one of the kids who could hang upside down on the monkey bars. Also when I go down a steep hill in the car to fast it is bad news for me. I guess we dont deal well with gravity. mary

I am sorry to hear about your frustrating doctor visit. I know somewhat of how you feel. My main symtpom has never been fainting but FATIGUE. And No just because you cry does not mean you are depressed!!!!!!!!!!!! The only way I got a doctor to do a TTT on me was because he had exhausted all other tests and I broke down and cried and so he could only think of one other test to do. Thankfully the TTT diagnosed me with POTS but again my main symptom is fatigue and all my doc seems concerned about is fainting. So you are not alone. Post as much as you want. And just keep fighting to be heard. mary

I am thankful for Life I am thankful for Family I am thankful for my Faith I am thankful for my what I have I am thankful that I live in a wonderful country I am thankful for this forum I am thankful for a diagnosis (I finally know) I am truly blessed. mary

As I was thinking lately about how much I HATE my POTS, I also starting thinking about the upcoming Thanksgiving holiday. I realize that in spite of my POTS I have so much to be thankful for. I tell people that I have a life altering disorder but it could be worse. So as odd as it may seem I am thankful for the health that I do have. and that is just one of many things I could list. So who is willing to post with me what you are thankful for? mary

Where do you get a remote car starter?

FYI. Most of you probably heard that Marie Osmond's father passed away this week. mary

Ulitmately only you can decide if it is worth it or not. If you can do it without jeopardizing your job I would say GO FOR IT. But I don't walk in your shoes. Best of luck to you and if you do get to do it, please keep us updated. mary

My symptoms definitely increase at that time of the month. Has anyone tried any of the newer birth control methods that give you fewer periods per year? Just wondering if anyone has had any luck with it. mary

I am trying to find a doctor who specializes in ANS? Anyone know of such a doctor in this area? The one I found won't see me without a referral. mary

People just dont get it. Until 2 months ago I worked in an office with a woman that was extremely hot and froze the rest of us. She is older and sweet so no one wanted to upset her. She could not work hot so I use a heater and dress in layers. But the annoying thing is that people that are hot natured usually have no concept of what we cold natured people go through. One person even said that I could just put on more clothers.....no big deal. I told them it is hard to work when you are so cold you are in pain. Now I am in an office where I am in charge but I still try to accomodate others so I still use a heater and dress in layers. At least I wont have to be in pain anymore. I feel for you and hope people will listen to you. mary

I noticed you said pain management doctor. Some pain medicines can affect your ability to go to the bathroom. mary

I have always been hard to get blood from. If you prick my finger, it is hard to get enough blood out to do anything with. In my arm, my veins are small and they roll. Does any of this have to do with POTS? mary

I am so sorry to hear about your daughter. If you can get to Dr Grubb, I highly recommend it. I know that when it is your child that is suffering, we as parents would do anything to take their place. But since we cant do that, what we can do is fight with everything in us to get them the best care possible. Your daughter is blessed to have parents to fight for her and not let a doctor that doesnt understand stop you. I have times when I can walk straight, like a drunk woman. I have not found a doctor yet who understands but I am not stopping till I do. Your family is in my prayers that God will guide you and lead you and also for his healing to be granted to your daughter. mary