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Everything posted by dmaejean

  1. Hi Maggie, I was diagnosed in 2005, at 55.
  2. Hi, I always stand with my legs crossed and when I have to sit in a chair for any length of time, I have my legs crossed and feet in the chair with me. That's the only way I can think, and then sometimes I still don't think very well. But it helps my sx. Donna
  3. I am so frustrated!!! I have moved three hours from the cardio that diagnosed me with POTS and I am looking for a local dr. I have been seeing a cardiologist that asks me how I want to be treated. Do you want to take Zoloft? If so, what strength? Do you want to go up on BB? I thought, I'm paying you to tell me what I need. So I decided to try another one, get a second opinion. I had an appointment this am. The nurse did orthostatic bp's. She could hear the one lying down but when I sat up and stood up, my bp was so faint that she couldn't hear it. (it was dropping, HELLO) She kept trying and finally told me to sit in the chair and she took it again. She kept taking it till she got a good reading. So obviously it didn't show a drop in my bp. I said to the dr., I would love to get better enough to go back to work. He said, You can go back to work now, you have no restrictions. I thought "What am I doing? Don't these dr's understand that if I could stand up without my heart racing and my bp going everywhere, maybe I could just function every day. GO BACK TO WORK!!!!!! I couldn't believe it. I can't even stand in line at the grocery store. I get brain fog and can't remember things unless I have it written down. I am an emergency room nurse. No patient wants me taking care of them and not remembering what I am doing. I left there so discouraged. My heart is in perfect shape, thank God. That's not why I went to see him. My autonomic nervous system is out of wack and I want someone who knows about POTS. Sorry for the rambling and thank you for letting me vent. I know most of you have experienced similar frustration. So glad we have this forum where there is somebody who understands. I guess having a doc three hours away is not so bad after all! Thanks, Donna
  4. Lisa, 88/50 is not good for an average bp. Call your dr. tomarrow so they can adjust your meds. It usually gets lower while sleeping and you don't want that to happen. Donna
  5. What an interesting discussion. My doctor wanted to see my bp after standing for 10 minutes. She told me if I have to hold on to something or move my legs, stand for 10 minutes and then take my bp. I held on to a shelf and by 10 minutes I felt like all the energy left my head and I had to throw up. My bp was 61/41 and it took me two days to recover. For the most part, I can stand less than 5 minutes, but I get symptoms right away, as soon as I stand still.
  6. Hi Maxine, I was denied three times and waiting for a hearing. They told me that it would take a year or more. I was an emergency room nurse when I crashed and can relate to all of your frustration. My sister, who is a nurse practitiioner was my caregiver the first year and she wrote a letter. I also wrote all of my senators and congressmen (I live in MS) and the president of the US, and in less than three months, I was approved. I would be glad to send you a copy of the letters that I wrote is you pm me. Good luck to you. Donna
  7. Hi all, What an interesting discussion. I never heard of tall and thin potsy. I am 5' 10" and was lanky as a teenager and young adult. I am 57 now and weigh around 185. Maybe the blood takes longer to get to our heads then someone shorter. I have always joked about that but it is a possibility. Since POTS, though, I am incredibly pale. Does anyone else have this symptom. I love this forum. Thanks, Donna
  8. Hi All, Isn't it funny how we are all different. I with Dizzy, do better in the winter. I live with my daughter and she keeps the heater on for the kids and I have my bedroom window open and sleep in front of it. I can't breath when it gets too hot. The cold air is wonderful. I did read where alot of us have a harder time in cold weather. Donna
  9. Hey Willows, What do you mean 'at my age'. I'm right there with you girl. I am also crafty. I made my grandbaby a wicked witch of the west costume this year which turned out too pretty to be a witch. Anyway I am 57 and I make and collect raggedy ann dolls and make quilts. I am trying to get a little bit of a business going, but so far don't have enough energy to. I think loving all of the kid stuff keeps us going. Your pics are great! and God bless you for doing so much work for the little ones!! Donna
  10. Hi Emily, I have not been able to sleep since I got sick. It is so frustrating, and I also have tried almost everything available. None of it works, although my insurance will pay for Ambien, it doesn't work for me. My EP told me that the reason why we can't sleep is that our adrenaline has to work so hard all day just to keep us going that when it is time for us to go to sleep, it can't just shut off. That made alot of sense to me. The only thing that works for me is .5 mg of Xanax, and that doesn't work all of the time. I'm not sure of the website, but have you seen Montel Williams advertise a company that pays for drugs for people who can't? Maybe they would help, have you tried to get samples from your doctor, my doctor gives me samples of the expensive stuff. Also, there was a discussion about this several months ago on this forum and several recomended writing the drug company. Hope you find a way soon, it is miserable being awake all night and watching the clock. Take care, donna
  11. My ep doc said that as with me, alot of pts with pots can also get cfs. I started having sx of cfs about one year after the pots started. Donna
  12. Hey, I think noise bothers me more when I'm not in control of it. Like you said, home noise, music in the car or the kids noise doesn't bother me but someone elses tv or noise in a restaurant or store drives me crazy. I also have a big problem with too much light. I think it has alot to do with pots. I also have CFS, so maybe it is a little of both. You all are always such a big help to me. Thanks, Donna
  13. Hi y'all, Sinus bradycardia is slow heart rate origionating fromthe sinus node which is in the top chamber of the heart. That is where it is supposed to come from,only yours is probably lower than 60 bpm. Normal sinus rhythm, which is only a technical term for normal heart rate is between 60 and 100. Anything lower than 60 is brady and higher than 100 is tachy. Sinus tachycardia which most of us have is a fast heart rate origionating in the sinus node in the atrium, the upper right chamber of the heart which means it is normal except fast. When I had a stress test, my heart rate went over 170 and it was a sinus rhythm, which means that it was otherwise normal. SVT or supraventricular tachycardi is also a fast beat, above 150 and origionates in the ventricles which is the lower lobe of the heart and that is not normal. SVT can turn into a lethal beat, v tach or v fib, if not taken care of. When I was in nursing school we were taught that anything over 150 is svt unless proven otherwise. In orherwords we treated it as if it were the worst just incase it was. Most of the time it was sinus tachy but you can't take any chances obviously. The reason they can't be sure when it is so fast is that you can't see it well enough on the ekg because all of the beats run together when they are fast. When it slows down enough, the doctor can tell exactly what it is. I know I sound like I am rambling, I'm sorry if I am. I am an emergency room nurse, at least I was before POTS and it can be really scary when they tell you something and they either don't know what it is themselves or they don't explain it to you. There are some wonderful nurses out there but not all of them know what they are doing. Ask your doctor to be sure. I hope this helped a little. Donna
  14. Hi Amber, I am an emergency room nurse (a disabled er nurse now). I remember in nursing school they taught us that when the heartrate is over 150, the heart is going so fast that you can't tell what kind of rhythm, so we treat all fast heart rates as SVT's. Supraventricular tachycardia are beats that origionate inthe ventricles, the bottom chambers of the heart. First they try meds to slow the rate and if not they try cardioversion, which is what shocking the heart is. Most of the time that makes the heart stop for a couple of seconds and then it starts again and is in a sinus rhythm, beating like it is supposed to. Most of us have sinus tachycardia, which origionates in the sinus node, in the atrium, the top chambers of the heart where the beats are supposed to origionate. Shocking doesn't help this kind of tachy. A patient told me that it feels like a mule is kicking you in the chest. I am not trying to scare you Amber. But you need to check into why they want to shock your heart, even if it means seeing another doctor. I don't take any medication or let the doc's do anything to me unless I agree that I need it or it might help. So many patients do not know that they have rights. And like someone else said, sorry I can't remember who it was, we know a whole lot more about our bodies and our conditions than most doctors. Don't let them shock your heart unless you know that that is what you need done. Hope this helps. Good luck, Donna
  15. I've had POTS since March 2005 following a simple gallbladder surgery. I had severe atalectasis following and have been sick ever since. I will be 57 next week. Dx in Dec 2005.
  16. Sitting up is almost as hard for me as standing. If I have my feet elevated, I can sit longer. A recliner is the best way for me to sit.
  17. Hey, you'd think they would give us something easy to put on, but when you are potsy, nothing is easy. I have to lay down and put one leg up in the air at a time (no laughing aloud) and pull the stockings on towards me. I also have to recuperate for about 15 minutes before I can do anything else. I can't get them on sitting up, I get too out of breath.
  18. java script:emoticon('', 'smid_2') :(Hey, I have tried all of the sleep meds and if I;m surging, nothing works. Actually, if I take Lunesta or Rozerem, I am up all night. Ambien CR works every now and then if I'm not surging. What I have found to work the best, and it doesn't work all of the time is Melatonin and Valerian root. These are herbal and they work better than any of the meds. Hope this helps. Donna
  19. Hi Jacque, I also have a tumor on my adrenal glands, on my right kidney, I was evaluated by an endo and another doctor and they told me that it was nothing to worry about, has nothing to do with my symptoms. Hang in there, the worst part is the waiting. Donna
  20. My symptoms started at 55 right after gallbladder surgery.
  21. Hey y'all, I take Toprol XL 50mg and yes I have noticed a difference. My heartrate has come down for the most part. It still goes up if I am really stressed, but my feet aren;t purple anymore. The day after my gallbladder surgery I noticed my feet purple when I sat up on the side of the bed. Toprol has made that much better. Does anyone have any experience positive or negative with midodrine. My dose was increased two weeks ago and I can't tell that it is helping, even if I forget to take it, nothing changes. I can tell if I forget the beta blocker, my heart pounds ninety to nothing. Thanks Donna
  22. Hi Emily, My doctor told me that our adrenaline works overtime all day and we can't just turn it off at night. I also have problems sleeping, big problems and nothing works, All of the script drugs, ambien, lunesta, rozerem, etc have the opposite effect on me and I stay up all night and even more wired than if I take nothing. Does anyone know of something natural that helps and doesn't exacerbate potsy symptoms. Good luck Emily, my doctors know that I am in limbo waiting for ssdi and with no income so they give me as many samples as they have. The drug rep is also a great idea. Nity Nite (yeah, right, I wish) Donna
  23. Thanks Nina, Is there anything that you stay away from or eat that helps your symptoms? Thanks, Donna
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