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Everything posted by Rachel

  1. Thank you all for your responses and for sharing your experiences, painful though they may be. I wish I had more answers for you! I'm not exactly sure how I was diagnosed with the antibodies for M2 receptors. It was back in 1996. I had been going to a cardiac electrophysiologist for a while, but there were never any medications that worked for me. 10 years ago there weren't as many treatments as there are now, so we quickly ran out of options. After a year I was sent to Johns Hopkins to be seen by a neurologist there. At that time they were doing some sort of study and they used my blood in that study. That was when they found an antibody that the neurologist said was causing my POTS. I have been trying since October to get my medical records from Johns Hopkins so that I can get more information on the antibody, but they still have not sent me the detailed information on that blood work. The only written evidence I have of an antibody to M2 at this point is the report from my cardiac electrophysiologist after she spoke on the phone with the neurologist at Johns Hopkins. When I get the comments on the blood work from Johns Hopkins I will let you know if I find any helpful information in there. I'm not sure how common it is to check for antibodies. I think the only reason I was checked is because I had failed all medication and a study happened to be going on at Johns Hopkins that related to POTS. No, I haven't been to a high-risk OB yet. I hope to go someday. But we don't have the best insurance, so I can't afford it at this point. Hopefully I'll be able to share some more information with you in a few weeks on the M2 receptors. Rachel
  2. 1) Name: Rachel 2) Favourite book: "A Voice in the Wind" and "An Echo in the Darkness," the first two books in The Mark of the Lion series by Francine Rivers 3) Favourite film: "The Sound of Music" 4) Things that make you happy: my husband, chicken nuggets, a nice bath, a phone call or visit from a friend, shrimp scampi 5) Something about you that no one here knows... Three years ago I played Maria in "The Sound of Music" at the local community theater.
  3. Hello everyone, Sorry for posting so many questions, but I still have so many unanswered ones! I don't have a POTS specialist to go to here in AK, so I have to find all of my answers on the internet. When I was diagnosed with POTS so little was known that the doctors weren't able to help much. Many of the symptoms I had weren't known to be symptoms of POTS. I only realized this past fall that my nausea is due to POTS. My first question is about nausea. Many of you have mentioned that you suffer from it. I was just wondering what POTS nausea is like. I many times get sick to my stomach in the evenings. And sometimes I wake up feeling very nauseous, but eventually it goes away. But can POTS nausea ever cause throwing up? Sometimes I get this weird "thing" where I wake up (always around 5-7am) and throw up every 10 or 20 minutes for a couple of hours. Then I go back to sleep, wake up a couple hours later like nothing ever happened. This has gone on for years, but the doctors never knew why. So I was just wondering if that sounds like it is related to POTS, or if it's something totally different. Hope I'm not making you nauseous reading this! My other question is about Social Security Disability benefits. I am not able to work at all because my symptoms are so severe. Many days I can't even take care of myself, much less cook or clean the house. So I applied for Social Security Disability, but after a several month process was denied because I'm "not disabled." Does anyone have any experience with this? Is it difficult to get disability benefits due to POTS? Do I just need to keep applying every few months? Sorry for another long post full of questions! But thanks for your help, Rachel
  4. For those of you who have POTS, I was wondering if you know the cause of your POTS. I realize that many people either can't or don't get to the point of having to discover the cause of their POTS, but if you do know I'd like to hear what the doctors discovered. The main reason I am interested is I am trying to see if I can find a connection between my POTS and the miscarriages I have had. I realize that miscarriages are very common, many occuring before a woman even knows she is pregnant. And I know that there isn't any evidence that POTS actually causes miscarriages and that there are many women who have POTS and also have successful pregnancies. But I am wondering if there is a connection for some of us. My POTS has a autoimmune cause. My body makes antibodies for M2 muscarinic acetylcholine receptors. These receptors are found in the heart, throughout the brain, the uterus, and many other places in the body as well. Because my M2 receptors don't work right, the messages from my brain to my body get blocked and this causes my POTS. I am wondering if this same root problem of my POTS also causes my miscarriages. Do any of you know the cause of your POTS? And if you don't mind sharing, have you had any difficulty getting pregnant, or maintaining a pregnancy? If you have had a miscarriage, was a cause ever determined? I have been working on researching this online, but unfortunately there isn't much information. Most of the studies have been done on rat uteruses. Which, although it can shed some light, it can't be translated directly to people. P.S. My heart goes out to those of you who have gone through the painful loss of a child in a miscarriage.
  5. WAREAGLE, I'm sorry you are having so many bad days with your health. It's tough when you feel like you're trapped by a body that won't work properly and you can't see any improvement. As for treatment, you just have to keep trying. You might get lucky and the 4th medicine you try will work. Or it might not be until later on that you find a medication that works for you. However it goes, don't give up. Keep trying and keep fighting. As for deconditioning, it can be hard to work against, but do what you can. The YAZ exercises are a good place to start. I don't always exercise officially. Sometimes my "exercising" is just making the bed (if I even stay out of it long enough!), sweeping the floor, or doing laundry. Learn your limitations and just do what you can do physically. I have had to learn not to push myself too hard. If I push beyond comfortable limits I will be in pain and be very weak the following day. You might want to speak with your doctor about finding a cause for your dysautonomia (Do you have POTS?). Many people aren't able to find a cause, but if you do know it might help in knowing which medicine would most likely work. I've had POTS for 10 years, possibly my whole life, and have tried numerous medications. Eventually I actually stopped going to the doctor because there was nothing more they could do. I found out on my own that certain foods either helped or exacerbated my symptoms. I used to be on a diet that included lots of raw fruits and vegegables. That helped me more than any medicine ever did. I always felt my best if I ate only fresh fruit for breakfast. If I ate anything else my heart would pound. And with my lunch and supper I ate lots of raw vegetables. I never got back to normal, but came close for a time. I guess it took about 6 months of eating lots of raw fruits and vegetables to feel close to normal. It is difficult now to get the fruits and vegetables I need since I live in the "middle of nowhere" in Alaska. But diet doesn't help my symptoms like it used to. I have actually found a medicine now that helps at least a little - Mestinon. But it is the only one that ever has. I pray that things go well when you see your doctor and that you will be able to find some good options for treatments. And when you need hope, this forum is a good place to start! Hope you get to feeling better, Rachel
  6. Amy, I'm sorry you're having so much difficulty with remembering things. That is so frustrating. I have the same problem, but it comes and goes. This past summer I started getting scared because my memory became so bad I thought something was wrong with me. I wasn't able to express myself well. I'd be telling a story about something that happened that morning and couldn't remember the important details. And I was always forgetting words. You may find that in a few weeks or months your memory starts to get better again. I sure hope for your sake that it does. Meanwhile, lots of to-do lists and sticky notes help! Sometimes I have to place a pile of things right smack in the middle of the floor to make me remember it! I've never found anything that helped with brain fog or cloudy memory, but maybe you can take comfort in knowing that there are others that have the same problem. I guess it is just "normal" for all of us POTSies! Rachel
  7. Thanks for the replys. No, I never did have the plasmapheresis (I never know how to spell that. It is spelled differently depending on where you see it written). It didn't seem worth trying, plus it is so expensive and it is difficult to get an insurance company to cover it. The purpose of the plasmapheresis would be to clean out the substance/antibody in my blood that is keeping the M2 muscarinic acetylcholine receptors from working as they should. The doctor at Johns Hopkins said that he knew that the substance found in my blood was blocking the signals from my brain to my body and therefore causing my POTS. He said that the plasmapheresis would be a treatment I could try, but he didn't know for sure if it would work or not. It seems to me that it would work for a time, but that my body would just continue to create the antibody for M2. I was hoping I'd be able to find someone who had gone through the procedure so I could hear how it helped POTS specifically. At this point I'm not willing to try the procedure. Risks would include mild or fatal allergic reactions or bacterial infections. If my health continues to get worse I guess might have to try it in the future. But not yet.
  8. Hi, I'm new to DINET. I've actually had POTS for years, but never even knew that there were support groups or forums out there for health problems like mine! So I have been very grateful for this website! When I was diagnosed little was known about POTS. Eventually I just quit going to the doctor because I didn't want to be a guinea pig anymore. I was tired of trips to the doctor being my social life. My health got somewhat better for a year or two, but has been steadily getting worse for about 5 years now. I am no longer able to work, I have to rest or sleep most of the day, I can't stand for more than about 2 minutes without great difficulty, and somedays I can't even watch a movie because keeping my eyes open is too exausting. I am trying Mestinon now, but I don't hold too much hope for it because treatment has never worked for me before. I've been doing research since late fall of 04 just to see if any more had been discovered since I was going to the doctor in highschool. So I have been very pleased to find so much new information! Problem is, I've been living in Alaska for over 5 years now and there aren't any POTS specialists up here. So I have to do my own research. I'm still searching for some answers, so I thought I'd try to find some on here. When I was at Johns Hopkins they found a substance in my blood that antagonizes M2 muscarinic receptors. They believe that is what causes my POTS. Has anyone else had tests come back with this result? Are there any treatments that worked? Plasma Phoresis was an option given to me a few years back, but I was told that there is some risk involved, it may or may not work, and it is expensive, so I never tried it. Has anyone else tried this? I'd be grateful for any help you can offer. Thanks so much! Rachel
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