Roselover

Thank you, everyone, for your love and well wishes and prayers this past week. I am home and really enjoyed sleeping in my own bed for the second time in fourteen days! I am exhausted as you can imagine. So, here's what I learned. Autonimic dysfunction was confirmed. My stomach is not functioning correctly. The top part seems to move the food down, but the lower part doesn't do it's work at grinding and empyting and doesn't do enough to stimulate the small bowel to do it's job. The nausea and the pain are all tied up in the neurotransmitters sending pain and nausea messages to the brain, even when there's nothing to be nauseated about. Basically, the same problem that causes the POTS and other autonomic dysfunction symptoms. Unfortuneately, there's not a lot to do about it. They gave me a perscription for one more nausea med that is a 3 day patch. I'll try that on my worst days hoping it will allow me to stay hydrated and out of the hospital. I am supposed to stay away from pain meds. This is discouraging to me because there are times that the pain is so bad. And the one thing I have had is my pain meds to have a few hours of comfort. They are going to send me to a pain clinic to learn to deal with the chronic pain without meds as much as I can. One thing the doctor suggested was using Valium on my very worst days. He said it doesn't help the pain, but it will help me deal with and it won't slow down my motility as much as the Vicadin. I'll have to talk to my family doctor about that this week. The last and most hopeful thing is a medication he's prescribed for the motlity. I have to order it from Canada, but it doesn't have the same side effects as Reglan and he says, works as well as Reglan for motility. To begin with this week, I am going to give Zelnorm a try. I am doubtful though, because I have frequent boughts of diarrhea and I'm afraid Zelnorm will enhance that. But he thought it was worth a try so while I work on getting the med from Canada, I'll try it. The only other thing I can do is try to get the autonmic dysfunction under control. I didn't get to see any of the autonomic subspecialists while I was there. Most of them were gone. I do have an appointment with Dr. Sandoni in December. I won't travel again in December, but at least I have an in now and I have the option of seeing them in the spring. I see Dr. Grubb for the first time in January, so I may not even feel the need to go back to Mayo... we'll see. The autonomic testing at Mayo is so professional! Some of my other tests were so uncomfortable, that the autonomic testing seemed almost fun in comparision. They told me they usually run the tests on about 12 people per day, but they can do 15 a day if needed. As I said in my other note, they only make you stand on the tilt for 10 minutes so it wasn't near as bad as the other two tilts I've had. Mayo is an amazing place! Almost all of my appointments were on time and I actually had very little waiting room time. We stayed at the Khaler Grand and it was perfect! The temps were down to -9 with wind chill, but we never even stepped outside in it. Plenty of food choices, wireless internet available in waiting rooms ( my husband did lots of waiting for me. Well, just wanted to give you all the final update. If anyone has questions, feel free to ask and I'll try to answer! Hope eveyone has a wonderful Thanksgiving week. Love Roselover

Well, everyone, here it is, Thursday morning. I just completed the basic autonomic tests. They only make you stand on the tilt table for ten minutes so it wasn't as bad as others I've had. They're trying to get us in with an autonmic specialist but we only have today and tomorrow so I am praying for a miracle to get in to see one of them. Dr. Low is not here this week, but I may get to see one of the others. Yesterday was HORRIBLE. I had a seven hour test of the muscles of my stomach and I sat with a tube down my throat, gagging and trying not to wretch. I have more testing today and tomorrow and hopefully we'll get in with one of the autonomic specialists and then we have our final appointment with the Motility specialist. This is an amazing place!!!!!! Thank you so much for all of your prayers and good thoughts. I hope I learn something to pass on to all of you, but you are all a great support. Love Roselover

Hi everyone. I got out of the hosptial just in time to head out on my trip to Mayo. Well, I'm here and in the midst of a motility test. I had to eat radioactive scrambled eggs and then they take pictures every hour to watch them. We met with the GI specialist yesterday and then they schedulded our week FULL of tests! I will also be seeing the autonomic specilists and have some testing done. All in all it is going to be a really tough week! I really don't know how I am going to hold up, but so far everything has gone really smoothly. Just wanted to say Hi and tell you all I made it here. I can get on internet in some of the waiting rooms so I am check in and try to keep you updated throughout the week. Love Roselover

Hi everyone. I am in the hospital and a very kind nurse let me use her computer so I could do a little research. I had a PICC line put in yesterday after they had used up every vein in my arms. BUT, I had a terrifying reaction to the lidocain. All of a sudden I felt like I was being pushed down into the bed, my fact went numb and felt like someone was squeezing it and I could breathe. Lidocain is supposed to be our friend or so I though. Anyone else have this kind of reaction? I'm hoping to get out of here friday or saturday and on Sunday I leave for Mayo to see the GI specilists. But yesterday was a big step backward as I am now running a fever and have body aches and a tremendous headache.I got a flu shot on tues... wondering if that's causing the fever.They are running blood cultures etc. Anyway, I'd like to know if anyone else has had a severe reaction to lidocain like mine. Also, I would appreciate all of your prayers. I'm a pretty sick little puppy right now. Love Roselover

Thank you everyone so much for all this info - it is really really helpful. Dancing Light - i have the same problem. When they give me two liters in two hours I feel flooded, then I pee all night and don't feel any better in the morning. When I've been admitted to the hospital, I ususally feel better in a day or two with going through 2-3 bags in 24 hours! That's why I thought doing it at home might help. I see Dr. Grubb in January, maybe he can help with this and answer the question about why the slow long term helps more than the quick fluids. I got one bag in an hour yesterday with Zofran and I felt a little better afterward and a little better this morning - although that's not saying a lot. I've begun to lose weight again. I am going to Mayo for motility specialists in two weeks. Apparently they work closely with the autonomic specialists. Keep me in your prayers. Love Roselover

Hi, Haven't posted much because I'm down deep in the POTS hole. I do read and miss communicating with you all very much. I was wondering if any of you have IV treatement at home and if so how did you go about getting it worked out? How does it work for you and what do you get? I have already had two trips to the hospital where all they did for me was IV saline and IV Zofran and IV pain reliever. I have a standing order for IV saline at a local IV therapie unit, but a quick bag of IV doesn't seem to help me as much as several days of slow drip IV. Also, the zofran works better IV. But I'd rather do this at home rather than staying at the hospital. I just thought I'd ask the question because then I have some info to help my doctor. She doesn't know much about this, but is willing to learn so I ofter tell her about what I've learned from others on the forum. Thanks for you input. ~Roselover

Pers, I am so glad you are going to get to FINALLY try Florinef! I sure hope it has some positive effects for you! I also just wanted to encourage you to hang in there girl.... I beleive your strength is going to get you through Oxford too. It's been a dream and I hope you can hang on to it. I also hope you begin to get the help you need to - like unbroken scooters. Wishing you the best, Roselover

Amy, When I first developed POTS I just experienced strange fatigue. Then I began having muscle problems like you describe. My doctors didn't know anything about POTS so they focused on the muscle thing and diagnosed fibromyalgia. Though I believe fibro is real and that I have it, I am now convinced that it is secondary to my POTS and is a result of it. I've had long periods lately where the pain is not very bad, but sometimes it flares. Do you have any spots that are tender to push on? Fibromayalgia has some specific points they use to diagnose it, but the tender points can be anywhere. I find that heat and an ointment like flexall or icyhot are the best treatments, but I also have used Tyleonl #3 (with codeine) when it's at it's worst. My symptoms seem to be at their worst when I am not sleeping well or when I have stressed my body. Sleep is considered to be one of the major forces in Fibro. When we get solid sleep with all the stages, our bodies release growth hormone. Without this nightime GH, we have muscle pain. It makes sense to me that dysautonmia can also cause this as many other hormone release mechanisims are out of wack. Hope this helps. Roselover

Hi Hillary, Welcome. I've been down in the POTS HOLE along with many others, so I haven't been able to welcome newcomers as I would like to. Nice to meet you. I've been losing quite a bit of hair lately too. I have thick hair so it doesn't show yet, but it's a pain to wash my hair because there's so much hair coming out that gets all around my fingers. However, I am pretty sure my is due to three weeks of not eating due to GI issues! I lost 12 lbs really fast and had little nutrition. Now that I'm eating a little, I'm hoping that the hair loss slows down. We'll see. ~Roselover

Perspehone, It's so nice to hear about you and Oxford. I was so excited for you when you got in and so disappointed when it looked like you couldn't go. Thank you so much for the updates. I hope things continue to improve with the disability help etc. Keep us updated as you can. Love Roselover

Dear dear Emily! Happy Happy Happy Birthday!!!!! I so wanted to send you a painting for your birthday, but you know I am really deep in the pots hole right now. I have been thinking of you a lot and wanted you to know I am sending you my love for your special day. Love Roselover

Hi everyone. Thank you to all of you who have been asking about me. I just wanted to give you an update. First, I hit bottom on Sunday. Went for IV's (saline and zofran) was miserable through the night and Monday morning my doc admitted me to the hospital. I just got home this afternoon. Basically, they kept me on IV's, and kept me on pain meds and zofran until I could tolerate a little food. I have an appointment with the GI motility specialists at Mayo in November. They are just trying to help me hang on until that appointment. Vanderbilt is out. I spoke to them this morning and with the way my stomach is going it is going to be impossible for me to be off all my meds and make it through with the study. They said I could reschedule later if I want to. But I see the Mayo GI in Nov and Dr. Grubb in Jan so I'll wait and see. All in all, my spirits are good considering. I am very disappointed about Vanderbilt and a little nervous about how the next five weeks will go until I can get to Mayo, but just have to take it one day at a time. So there it is... I've missed you all. Hopefully, I can be around a little more in the coming weeks. Love Roselover

Oh you dear friends make me cry - in a good way. It's so nice to know I am not alone and there are friends who understand and care. I am overhwelmed with all of your love, Thank YOu! I took my BP last night and laying down it was 77/51... YIKES! This morning I am shaky and dizzy so much so that I can not walk to the bathroom by myself. I HATE this! I've drugged myself up this morning and hope in an hour or two to force down a banana and hope it does OK. The past few days, I've been able to eat a peice of toast on the meds, but when they wear off I get diarrhea which of course is not helping me stay hydrated. I am afraid I may have to head to the hospital. Thank you so much for your prayers. Em... YES I have read 21 Balloons!!! We really are kindred spirits, huh? I'm in on a visit to the DINET Spa! Can't wait to see you all there! Can't think anymore... I'll keep ya updated. ~Roselover

Hi All, I haven't been posting much lately. It's about all I can do to try to keep up to date on reading the posts. I have been really sick and in the past week, I haven't been able to eat at all. I've lost 8 lbs and I'm so tired of all this. I'm keeping fluids down some, but also have diarrhea off and on. No one knows what to do for me, so here I sit, hoping each day that I'll be able to eat a little bit tomorrow. I know so many of you can relate. I just wanted your loving support and for you all to know I am reading even when I'm not writing. I am supposed to go to Vanderbilt in two weeks. I also have an appointment with the motility specialist at Mayo in November, but I haven't figured out if I can actually get to that appointment. Oh what a life.... At least I'm here on the calm west coast where all we have is a burping volcanoe! I hope all of you in the gulf coast area will be OK... I'm praying for you. With love to you all, Roselover

Had to add my voice too.... HAPPY BIRTHDAY!!! Love Roselover

I don't get scared being along, but my husband works 5 minutes from our home. One thing I do though, when I'm going to be alone, is I have someone help me set up everything I'm going to need around my recliner chair and I spend most of the time sitting. I have the phone next to me, my gatorade or ginger ale full, any activities I might want (knitting etc) next to me and I really don't havet to get up much except to pee. Don't know if you've tried all this, but I hoped it might help. ~Roselover

Ernie, thank you from me too, for updating us. I am so sad for Morgan. Please give her our love and tell her we're behind her all the way. Love Roselover

Ernie, my thoughts are with you. I am so excited for you. I totally understand your fears. I look forward to hearing how it went! Hoorraaaaaayyyyyy for Ernie! (clap clap clap clap) ~Roselover

Dayna, I had surgery last November and actually did really well. I printed out info for the surgeon and for the anethesiologist about POTS and the great need for extra fluids and suggested an artial line to track BP during the surgery. They followed both suggestions and I actually felt really good from the rest and fluids. I had my gallbladder out 12 years ago. Very small incisions and easy recovery - though I didn't have POTS then. But last November I was fully POTSy and had a full hsyterectomy so I hope this encourages you in case you need this surgery. ~Roselover PS: Lots of good articles to print on the PotsPlace website (DINET). Thats where I got mine.

Hi Em, It took me a while to post here because... well, what you wrote is exactly how I've been feeling. I try to check in, and today I can at least see a little to write you a quick note of understanding. It's discouraging and hard to deal with. I think of you often my butterfly friend. Maybe someday soon we'll both peek out of this hole we're in. Love ya, Roselover

Thanks for looking for these top questions... that's a great idea. I think my top question deals with the brain fog - mental losses I have. Some days they are worse, but even on good days, I know I don't function as intelligently and logically as I used to. My question... is this a permanent loss? Or will I regain my old self when I get symptoms under control. And what is really causing this? Is it just reduced blood flow to the brain? Is there anything that would help me not lose more? Thank you so much. I am so sorry that you are in a place that they need to see you so often, but glad for you that you can have somewhere to go. ~Roselover

Hi Morgan, I'm a little late too, but want you to know I'm thinkin of you. ~Roselover

Hurray! I was so glad to read your post too! I'll be thinking of you as you start Oxford in a couple weeks. Good luck!!!! ~Roselover

Thanks so much Em... what a lengthy answer and even when you feel so lousy...you're great! I'll try to look up that thread at NDRF and I think I'll need to do some more research. I take Reglan for the digestion. If I'm already nauseated it doesn't hlep with that, but it definately helps me digest food. I guess I can take breaks from it and go for a liquid diet if needed. You quite a gal... thanks for all the info!!! After 'while crockodile! ~Roselover

Thanks Pooh and Morgan. The WebMD site says the manufacturer says treatment shouldn't go past 12 weeks... but they say that with other reflux things too so I wonder.... I'll ask my doc too, but she isn't always familiar with these meds. The GI seemed to think I should stay on both Reglan and Protonix, but they have also kina written me off saying they couldn't help me and that I should see a motility specialist at Mayo. Well, thanks for the input! Love Roselover