Roselover

Jenn, I know you and Steph have been talking on another thread about your trip to Mayo. I just wanted to start another thread to wish you luck and give you my cheering on and support. I am looking forward to hearing about your trip and your expereince. My doctor has just sent my records and a request to Dr. Low and I'm hoping he will see me too. Don't know how long it takes to hear, but I hope your experience is good and that you will be willing to share it with us. Too bad we can't arrange a group visit Best Wishes, ~Roselover

Emily, Surf's up...hang ten baby...here's what I found while catching the waves on the net.. http://shop.beautysurg.com/index.asp?PageA...TS&Category=284 http://makemeheal.com/mmh/product/index.vm http://www.homerecovery.com/compressiongarment.asp http://www.advancedbiotech.com/ http://www.advancedbiotech.com/ This one seems to be a specialized order place, but it also showed compression gloves. http://www.devinemedical.us/surgicalgirdle.html Tea, thanks for your links too - didn't see you out there on the waves! I have a question for you though... Do you like the ones with zippers or is it better not to have zippers etc.? Also, many of these are for after surgery - lipo I think - and they have what they call Stage 1 and Stage 2. Stage 1 being the first couple weeks after surgery and Stage 2 being for the months after that. Which one would be better for us? Do you know? Anyone who orders one... please let us know how it works. I hope to get one soon too! Isn't life ironic???? Getting excited about getting a new compression garment.... but I can't wait! "Catch a wave and you're sittin' on top of the world" "Get a abdominal compression garment and you're sittin' on top of the world" (sorry didn't mean to go overboard with the surfing terms. Just feeling a little silly this morning. Maybe it's the weather! ~Roselover

Tearose, Thank You, Thank You, Thank You for sharing this information!!!!! This was SO helpful! I too would like any info on ordering online, but I am also going to do some searching and will share what I find. ~Roselover

Bren, I am just hitting three years too. And, in the last few weeks, I have been wondering the same thing. Each time I think I have found something to take my mind off my illness, I find that I take a step down in energy and ability to do anything. A few things I have done: I have always wanted to learn to watercolor paint. I have begun painting on my better days. I also order watercolor books to be mailed to me from my local library to look at and learn from when I am not even up to painting. I also order documentaries and other videos from my local library. I also have some computer games I enjoy and play them on a laptop while sitting in my recliner. Sometimes I enjoy knitting - but when the brain is foggy I struggle with patterns. One of my favorite pass times was playing tennis with my husband. Now we have a Nintendo tennis game we play instead. It's not as good, but sometimes I almost forget I'm sick and the old competitive me comes out. Imagine a couple in their late 40's playing Nintendo and laughing and cheering like they are really on the tennis court! Some days I can only sit in my recliner and listen to music that I enjoy and imagine myself somewhere else - sometimes I take a walk out in the country side... many times I travel to England, or I am driving fast in a little convertable sports car... depends on the music. But many other times, I lately, I feel like you Bren... wondering what can I do? Thanks for posting this question. I hope others will share what they do. It helps me to have more ideas. Sometimes, like Stacey said, I just want to scream! ~Roselover

Yes Morgan!!!!! I do too! Mine is usually a smoky type smell, but I also smell other things that no one else seems to smell and I can't find anything that's causing it! Can help with what it is, maybe someone else can, but your'e not the only onw! ~Roselover

I just wanted to thank all of you for this information. I just orderd a medic alert bracelet. I have been very uncomfortable about being able to communicate my needs in an emergency and have wondered about these bracelets, but your posts got me moving on it. I have Autonomic Dysfunction and Postural Tachycardia on it. Thanks for your help! ~Roselover

What a great picure...Morgan outside waving her arms to send the sweet scent of flowers around the world! I'l take a careful sniff if I step outside today and let you know when the scent arrives Morgan! Love Roselover

Thank you Corina. Your last rose was so special, I'll take one any time you want to send one! Tearose, thank you, I'll try to look up these posts by Merrill and EarthMother. Thanks for all the info everyone. (My ear is still ringing this morning, but at least I slept last night.) ~Roselover

Wow, once again, I feel comforted that I am not the only one with these spells. Not that I want any one else to expereince this, but it's scary and and it's hard to know what is an emergency and what I just have to wait through. Thank you all for your comments and all the good information. Thanks Nina for the info. You know, I think my BP usually drops very low during these, but I think I'll be more diligent to check and make sure it's not soaring high. Now, Nina, I don't have familial dysautonomia so I don't think this could be a crisis. But I have wondered about Mastocytosis - Mast Cell disorder and this can also - in the worst case scenerio - lead to shock as well. Can you define for me the difference between these typical spells we have and an emergency? What should we all consider an emergency? I know extended high BP... anything else? Thank you so much for sharing your knowledge. ~Roselover

Morgan, you DO understand! Dizzygirl - that's exactly what I meant when I said storm. I HATE these "episodes"!! Last night though, instead of peeing ten times, my mouth and eyes were extremely dry! I really don't understand all this either, but thanks for listening and understanding. ~Roselover

My apologies. I didn't mean to use a term that had an official medical meaning. I had thought that term had been used by others here on the forum to refer to a flurry of symptoms. My mistake... I'm still learning. Sorry. ~Roselover

We've all talked about "autonomic storms" ... well I had a doozy last night... decided it was a Hurricane. As I laid awake with sweats, adrenaline, heart pounding, tightness in my throat and then a pounding headache, I wondered what I should name this hurricane ??? It's subsided a bit now, although it feels like it is about to flare again. My ears are ringing loudly and everything kinda echo's... like I'm in a cave. Anyone had this during a "storm"? Does it mean anything? ~Roselover ADDED LATER: Sorry, didn't mean to use a real medical term - "storm". Just meant I had huge flurry of symptoms all night. I apologize for misleading anyone. I feel so sick and I'm not thinking well. Was just trying to be a little funny in the midst of difficulties. There should be a smilie with a tear dripping. That's me.

Thank you Michelle. I have read this and will do my utmost to abide by it. Thank you so much for all of your work. I really appreciate your dedication and this forum. ~Roselover

Oh Ernie, you brought tears of joy to my eyes! Being couped up at home is one of my biggest trials. You are a real inspiration to me. Thank you for sharing and I hope you'll share more "getting out" stories!!!! Congratulations! ~Roselover

Hi Stacey, I had fibroids for many years. The helps that Gena listed are good. I finally had one grow too big and had to have a hysterectomy this past November. The best thing that happened to me in the past three years (physically). I am so glad I had it. If you end up going through surgery, just be sure to print off all the info about POTS and surgery that you can find and give it to the anestheologist so they can load you up on fluids and put in an arterial monitor for BP during surgery. I actually felt the best I have felt after my surgery - POTS-wise, not the incision of course - but because of all the fluids. Hope you don't have to go to surgery, but here's one person who is glad she did - just in case you need the encouragement. ~Roselover

Welcome Linda! I just found this forum a few months ago after 3 years of POTS. It has been just what I needed. I am sure you will find the support you are looking for! Sorry, I can't answer the question about pregnancy, but why don't you post a separate question and maybe one of the gals with this experience will see it and answer. Also, if you use the search button at the top of the page, you might find some info too. Again, Welcome! Roselover

Mary, I hope you and Marissa can enjoy her dancing this weekend. I'm a mommy of a dancer too and I know how special it can be to watch. My heart has ached as I read your posts. Thank you for taking the time to share your advice with me. Please know I am praying for you and your family. Roselover

Hi everyone, I had my first IV saline treatment today. I made a big mistake. Even after all the recent posts on dental work etc. (I've been reading them and saving some of the info for my next dentist trip) I didn't stop them from "numbing" my skin before the they inserted the IV tube. Big mistake I think. I've ended up with heavy heart pounding and adrenaline surges - must have had some epenephrine . Well, I learned my lesson! I think it's wearing off and as it does, I can tell the IV is helping a little - and even a little is GREAT! (if ya know what I mean). Well, maybe my little experience will helps someone else who is new at all of this. And thank you Geneva for your advice. I told them I might want 2 liters and ended taking them both. Glad I did. ~Roselover

Good advice Geneva! Thank you!!! Roselover

Thanks again for all of your concern. The nausea finally subsided and then a migraine set in last night... ugh... Is there anything you can take for migraines when you're on florinef? I ususally take Excedrin, but I think you'r not supposed to take the NSAID's. I still feel really crapy this morning, but I am going to get my first (non-emergency) IV saline treatment in a few hours. I hope it helps. For those of you who have also done this, how much do you usually get? My doctor didn't know so wrote the prescription "as needed". I thought I'd take my BP monitor with me and see what my BP and HR do after the first liter. As I fell asleep last night, I prayed for you all and thanked God for allowing me to find this forum. It is such a blessing. The encouragemnt, information, support and community I get from all of you is priceless. Thank you. If I don't post for a few days, it's cause I'm eating my ice cream at the bottom of the hole with Julie. But I know I will surface again. Love you all, Roselover

Hi, I had a good appointment with my Neurologist today. She is willing to work with us to get some expertise testing done. We were all set to pursue Mayo Clinic because of all the things I've read here. Mayo, just seemed to fint what I wanted AND my insurance will cover it (it won't cover Cleveland and Vanderbilt). But, my doc interned at Beth Isreal and knows Dr. Freeman. She said they have a good autonomic testing lab and suggested we look into that as well. Well, my insurance will also cover Beth Isreal so know I don't know what to do.... I don't want to give up the quality of the appointment, but there does seem to be some value in my doctor already having connects. She really isn't very familiar with POTS and will have to learn a lot so maybe somewhere she is familiar with is better. She said she'll pursue either one we choose. So... anyone have expereince at Beth Isreal? What can you share with me about what they offered and what you got out of it? Thanks for your help! ~Roselover

Julia, I'd like some Tillamook German Chocolate Cake Ice Cream please... or anything chocolate! I get my IV fluids tomorrow at noon. I sure hope it makes a difference. My hubby is very worried about me. I hate worrying my family and interferring with their plans. But I am glad they all love me so much. Thank you too, to all of you for being my sympathetic friends. I let the tears flow when I posted, knowin you would all care... and you did. Thank you! ~Roselover

Thank you all so very much for your support. EM... you made me laugh!!! I didn't barf on the doctor, but I think she could tell that it was a close call! I ended up not taking the phenergan and I am glad I didn't. The ginger tea helpeda lot and I think Merill was right - I was so stressed about this appointment it may have encouraged the nausea. I tend to be such an even keal type gal - not easily upset, so it's almost hard to recognize when I am stressing. My neurologist told me that she would rather I didn't take the phenergan because it can actually cause some autonomic problems. So as many of you have tried, she suggested Zofran and gave me a new prescription. AND... she is very willing to help me get into Mayo! We'll be working on that in the next week or so. She also suggested looking into a doctor at Beth Isreal - connected with Harvard because she worked under him. So we're looking into that option too. Thank you all for your loving support. ~Roselover

Thank you Morgan - you're right, I should have asked, what would you do... it's what I meant. I'm not thinking too well right now. OK - so I have a cup of ginger tea and made two more to put in my water bottle with ice. You are both right - I have to be alert for this appointment!!! (BUT I hate throwing up!!! With a passion! I threw up all nine months for each of my three pregrancies... I hate it!) If I'm still sick when I get home, I'll give the med a try, but not before. I have put so much into preparing for this appointment. I think I just started to panic this morning. Thank you for your advice and support! Roselover

Help.... as I posted earlier, I am doing awful low BP really high HR when up... and I have to leave in an hour for a very important doctors appointment... AND I am really naueated!!! I just got phenegran from my primary last night, but haven't taken it yet to know how it works. Should I take it now? Should I wait and take a barf pan with me? Should I try a 1/2 pill??? Any advice will be appreciated. ~Roselover