Roselover

Melissa, I have been thinking and praying for you so much lately. I'm glad you posted an update. I hope Domperidone works as miraculously for you as it has for me. I still get my cycles of nausea and pain, but they are so limited and lighter than before that I sail through just fine! I'm scared that there is going to come a time that I can't get it and then I'll be back where you are. Please let us know how it does for you. Sending a big hug, Roselover

Ernie, I think I'd encourage you to push to get an answer from the nurse or doctor. It's so frustrating when we need answers like this - need to make informed decisions - and we can't get answers! I wish I had experience to share with you! ~Roselover

Nina, I'm so sorry you couldn't sleep the other night, but you sure were productive! Your webpage is great. Nina's bracelets are better quality than mine. When I first started I couldn't afford to invest in a crimping tool and didn't know how to use it anyway. Now I just may have to invest in one . I do like the stretchy cord too though. I have also started making bracelets for little girls. I used to know lots of the kids at my church, but have found that being homebound, I don't know many now. So when I make it to church and see a little girl, I introduce myself and give them a bracelet. I've made many new little friends that way! Sally, thanks for the compliments about my art. I am new at it and am learning more everyday. I am signed up at the wetcanvas website - just started going there about a month ago. I've learned a lot from there! In fact, if you go the watercolor forum gallery, I just posted my first portrait for feedback. The post is titled "My first portrait". I'll add it to my website soon. We'll have to PM more about art soon and I'll have to check out your website too! ~Melanie

This is a great topic! I hope lots of others have ideas to share! This has been one of the biggest challenges for my husband and I. We used to be really good at dating - were even very creative when our kids were little and we were too poor to hire a babysitter, we created great dates at home. Somehow, though, these last three years have been a challenge in this area. One of the things we used to spend a lot of time doing together was playing tennis. So, we bought a video tennis game and now on our date nights, I sit in my relciner and we play tennis. It's a lot of fun and for a few minutes I forget I'm sick. However, I'm a little competitive and really get into it and sometimes I wear myself out just from a video game We also started going out for italian sodas after playing tennis, so now we make them at home and sit outside and talk. (Italian soda - Club soda, syrup flavoring (our fav's are peach and pina coloda) a little 1/2 and 1/2 and whipped cream on top). We've been thinking with spring/summer coming up of taking a drive and looking for scenes for me to photograph for painting. These aren't real great ideas, so we could use some ideas from others! ~Roselover

Yes, I'd like to know what "slow rehab" means too. It'll help your autonomic system rekick in? Please share more. ~Roselover

Deeplyset, Thanks for sharing all this. I'm sure it will be helpful to many people. We all like to hear what the docs at Mayo say. What do you take for your migraines? My family physician has been unsure of what I can and can't take with POTS because normal migraine meds open the blood vessels which seem to be opposite of what we need ...??? I'd love to know what you have tried. ~Roselover

Corina, Yes, there are places you can order beads and supplies from. I don't get out much either so it helps me to be able to buy online. But you might also google, beading supplies and see what you come up with. I'll PM you with the website I order from. I think it's actually the same as MM because she's the one that got me started! :-) MM: I hope you feel better! You've sure had more than your share of extra pains and illness! When you feel better, I'd like to know what Balinese beads are! I'll have to google Bali but maybe you can show us some pics of your bracelets too. ~Roselover

Be Still, I'm sorry you didn't get answers - I think we all understand that feeling. And I can really relate the the medical bills and paying for expensive tests that tell you nothing! I just had the same thing $500 to tell me everythinng is normal... ugh. Hope you all can support each other and get through this together. Wishing you a peaceful day. ~Melanie

I've asked and asked doctors and the only options I've been told about are: Phenergan (makes me doped up and sleepy) Zofran (mentioned above- get the sublingual kind) Transderm patch (whcih I haven't tried yet) Reglan (some possible side effects) Domperidone (hard to get) If you haven't tried any of these, you might ask your doctor about them. ~Melanie

OK... the first thing I did was get a basic medical bracelet with a chain. I got mine from MedicAlert, but you can get them in pharmacies etc. 2)Then I removed the chain from both ends leaving a ring on one side of the tag. 3) Then to make the bracelets I bought: Beads, lobster claw clasps and powercord (a thin elastic cord) I found that using the powercord has held up better than the beading thread I tried at first. Also, I don't have to be quite as precise in the length of the bracelet because it has a little give. I am also able to to tie the power cord better than than the thread. 4) Measure your wrist and tag. Subtract the length of the tag and you know how long your bracelet should be, but when you make your bracelet, don't forget to incude the length of the clasps. You don't want the bracelet too loose or it will catch on things. 5) I lay out my beads and design a bracelet. I have a little board someone made for me, but a peice of cloth will work too - you just need something that wil allow you to lay out the beads without them rolling around. After designing the bracelet, I lay the clasps at each end and measure to see if I am close to the right length. 6) I cut a piece of powercord with extra length for tying. I tie on one lobster claw using several knots. 7) Then I bead the bracelet and lay it down again with the second clasp laying at the end and measure again. Sometimes, I find that I am a little off and have to restring the beads to get the right length. 8) When the length is about right, I tie on the second lobster claw onto the other end. 9) I hook one clasp onto the open side of my tag, put it around my wrist and connect the other clasp to the ring I left on the medical tag. AND VOILA! You have a beautiful personalized medical tag! Here are some pics of a few of mine ( I've made my self lots! I may not feel like getting dressed or beautified - but it's fun to pick which bracelet I'm going to wear today) Any questions????? ~Roselover

B, I'm so sorry you can't get your eyes above the brim of the POTS hole.... I know just what you mean. I hope you can finish your classes too. Working from home might be a good option. Did your gastric emptying test show anything? I have had great help from domperidone - it has really really helped me with the nausea. I was on a lot of Zofran too. You might ask your doctor about it. Sending you a rope with a rose tied to the end, Roselover

Hi everyone, A while ago, MM got me hooked on making myself beaded medical bracelets. If you want to make your own, I'll tell you how to do it! Edited by Roselover: OK... never mind the PM's - lots of you want to know, so I have to upload some pictures of my own bracelets to my website then post them here with the instructions. Be back soon to post it all! ~Roselover

MM - hope you're fast asleep as I'm writing this. It'll probably take you a few days just to get over the stress of this so relax and let it pass! Pour yourself a nice cup of tea and breathe deep and remind yourself that "you made it!". That's my presciption! Thinking of you! ~Roselover

Corina, Sorry for your loss and the hard struggles you've been facing. I have to echo Morgan - My hysterectomy was the best thing I've done for myself - and I was Potsy at the time and very concerned about the anesthesia. I printed of some info for my doctor and took it to the hospital for the anesthesiologist. It suggested an arterial (?) BP monitor... inserted into the vein in the writst and watches BP very very closly. They had no problems and though recovery is slow with POTS, I am SO glad I had it! Glad to hear from you. ~Roselover

Oh LindaJoy, I was so sad to log on and see you'd been in the hospital! What about seeing your OB/GYN? Just trying to think what there is between the bellybutton and hairline Uterus, overies??? Low pain doesn't sound like gastritis but I could be wrong. Fever sounds suspicious too, though I know I often run a low grade fever for no reason. Docs I see don't seem to think outside their own field so I try to do that - if protonix doesn't relieve it, keep looking. I'm sorry I don't have great advice, but I'm thinking of you and praying for you. ~Roselover

Please - someone - explaing what the c-spine thing is....I've never heard of it - what is it and what are the symptoms? I had a hard hit to the back of the head as a teenager with whiplash type injury and it flared up for years. Now I have lots of pain on my spine in my neck and upper back. In fact I was thinking of talking to a PT about it. Also, when I saw Dr. G in Jan, in his examination, he told me I had a slight scoliosis! I had NEVER been told about that before! He said it was slight and nothing to worry about. Hmmmmm.... We love to grab at strings that might explain this don't we... but someday, one of our strings is going to lead to answers! ~Roselover

Rita, I've taken Ambien for over a year. I have only recently begun to need 10 mg. Up until the last couple of weeks, I broke my 10 mg in half and 5mg was perfect.... helped me fall asleep and I was overhung in the morning. I'd suggest you give the 5 mg a try and see how you do. I think I"m needing 10 mg now because of other meds and because I've taken it so long. I've heard others say this too and that eventually they needed a break from it because it became ineffective. I try to take a night or two off and sometimes hoping to prolong it's effectiveness. ~Roselover

Wellbutrin was prescribed by Dr. Grubb. I think he preferrs Cymbalta, but started with Wellbutrin because it not only helps with the norepiniphrine uptake, it also is supposed to help with fatigue and sexual dysfunction. I was told to very slowly decrease the wellbutrin and wean into cymbalta. Slowly decrease wellbutrin means take one the first day and two the second day and one the third day and so on. I really don't want to take two because of the headaches. Yesterday with one, I still had it and it was bad for a while, but better in the evening- which seems to say that missing the second dose really helped. I'd hate to mess myself up more by not following instructions, but I dread taking two today. Be Still: If you read on the Pots Place site of what helps, you'll see a description of Wellbutrin... I guess it does help some people. I really don't understand all this catecholomines and "reuptake" and why we would take something that inhibits reuptake... all the terms confuse me... but I am trying to trust those who are most knowledgeable and this was one thing Dr. G wanted me to try! So... on to Cymbalta I am very nervous about the posibility of nausea. I am getting gunshy of meds - everyone makes me sicker. After Cymbalta, they are suggesting the Procrit like others have tried. I guess you have to go through the process of ruling out the simpler drugs before trying the more unusual ones. About calling my doc... I WILL on Monday - she was out sick last week. BTW- I took my Wellbutrin about 2 hours ago... the headache is coming on again just now... UGH. Thanks for all your support and info. ~Melanie

Owwwww... I've had a headache for six days now. It's very focused on the left side of my head from my nose, through my eye and around the back of my head.... Nothing I've tried knocks it out. Ususally, my headaches respond to Excedrin but the last two afternoons I resorted to Vicodin. It helped a few hours but I just can't take more cause it'll mess up my motility. I'm thinking this is from my Wellbutrin... anyone else have this reaction? I think I'm done with this med Any advice? Any meds I should ask my doc about on Monday that might help if the headache is still there? Thanks, Roselover

Ernie, I'm really excited to hear about this, and can't wait to hear how it goes for you. I'm heading that way myself and a little nervous - a little gun shy about meds right now. Please let us know how it goes! ~Roselover

Oh Mary, I wish I was doing something like that to pamper myself today. Doesn't it seem like we shouldn't have to feel sick on our birthday? I feel so awful it takes a lot of effort to enjoy the day. On the positive side: My husband made my favorite scones with dried apricots, orange rind and pecans. I was served tea and scones in bed and my whole family came in and we enjoyed a 1/2 hour together. My son gave me the sweetest book about mothers and my oldest daughter left me a surprise note with a bookmark that said "Some people only read about heroes" and the other side says "I get to call mine Mom." My middle daughter made me an angel food cake with strawberry icing (my favorite) and my husband is going to make me dinner. My husband also gave me "Photoshop" which I have been wanting and I'm trying to figure it out, but what with the horrible headache I've had for five days and the brain fog - I haven't gotten very far. I suppose it IS pampering to have a family who loves me so much and YOU ALL are included in that! Thank you! ~Melanie

Thank you so much Mary! You warmed my heart this morning! ~Roselover

An update on my attempt to excercise through swimming: I've been able to get to about 10 min. of exercise. I feel great while I am swimming, though I tire out very quickly. Usually, my HR doesn't go much above 120 and the great thing is I DON'T feel like I'm going to pass out! Any other excersise would do that. On the negative side, it sets me back - sometimes the day I swim, sometimes the next day, but everytime, I end up with most of my day in bed. A big price to pay. It's like being prescribed something that is good for you but makes you feel worse! I do love the swimming though - I haven't felt the ability to be active without passing out for a long time so the activity is really fun. The afterwards is not. I wonder what it would be like to get an IV right after exercising? Well, that's one thing this fitness center does not offer I think my legs are getting stronger.... I'll give you another update in a month or so and we'll see if my endurance increases or if it just stays the same and it'll always be like this. Hugs to all my POTS friends! ~Roselover

Yep, I've had lots of episodes like this! It's better now that I am on domperidone. Yesterday, I awoke feeling the begining of all this and wondered why til I went to take my morning meds and discovered I'd forgoten my domperidone the night before, so I surmise that it is helping avoid these episodes. ~Roselover

Is this different than the acetycholine receptor antibodies that are tested for at Mayo? Thanks so much for the info... please let us know if you know when it is published and if they determine that there are treatments to counteract this situation. ~Roselover