danelle

Hi Altruism, I like your suggestion . I will wait and see if I get any more responses before I post a poll. That's an idea though:)

Hi all, it has been WAY too long since I have been on here:( Life has been very busy for me the past few years. I was wondering if we already have an awareness color for POTS. If not, I would like to do a poll on what everyone would like. If we do, please let me know what it is. I have something in mind for us that I think lots of you would like. Hugs to you all, Dani

Hi all. It's been too long since I have been on. I have a question. I have an event recorder on and have caught runs (6 or more) PVCs in a row that make me symptomatic. I am beyond terrified and have put my entire life on hold because I am afraid it will happen if I do anything or go anywhere. How many of you that have POTS have had this problem and what has the dr done? Any and all responses are so greatly appreciated. -Dani

Gosh, I am so glad to be back and to see some of my old friends still here And to hear from new friends too! . I just finished treatment a few weeks ago so I am still in the recoop phase. I am having some problems now with lots of edema and shortness of breath, chest pain, muscle and joint pain, nausea, and the list goes on BUT I am just so very blessed to be alive. My cancer is a very aggressive one, but I hope that we caught it in time, only time will really tell. For now things look ok.. I look forward to talking with you all again and hope I don't have to leave the site for more than a few days at a time. THank you all for making me feel back at home so quickly, I have missed you!!! Love, Dani

Thank everyone so far for your responses It looks like I may try the celexa but I will wait and see if I get any more responses!! Hugs to you all, Danelle

I need to add an antidepressant to my list of wonderful meds and I am wondering which one works best for most of you and has the least amount of side effects, my main concern is heart rythmn probs but I would like to know the other side effects as well.. THANK YOU!!

Hi all, I haven't been on here in AGES and I want to catch up with my old friends and all the new ones that I will be meeting on here. I have been off due to the fact that I was diagnosed with breast Cancer in FEB 07 and just finished all my treatments a few weeks ago.. I have a bit of difficulty typing due to the surgery and lymph node removal several months ago but I want to try and stay in contact on here as much as possible. Is there anyone else that has had POTS and cancer?? I would love to talk to you if you are out there!! Hope to hear from you all soon. Much love, Danelle (DANI)

Once again, Thanks to you ALL, You are all a blessing to me. Sorry I havent' been on. I had my surgery last monday and am still very sore but wanted to get on and say Hi and see what was going on. Lois, I would LOVE to talk to you!! I think I see where I have a message from you, if it has your number I will call. Is there any certain time that is better for you? Thank you so much for your kindness. Janine, I lost ur number!! IM me at danirn_951~~still yahoo............. God bless you all and wish me luck, I get the results back of the pathology from my surgery tomorrow afternoon. Danelle

First I want to say thanks to all of you for your support and kind words. Please do keep me and my family in your prayers. I am just sorry that my life took me away from my "other family" here on the site! I am overwhelmed again by the kind words and support that I find here. And it is only you guys that TRULY understand where I am coming from. I must say, this new journey I am about to undertake is terrifying but having your thoughts and prayers with me helps me tremendously. For those of you that remember me, my son is doing fair with his POTS. He is now 19 and in college but still continues to have problems with his, chest pain in particular. Keep him in your prayers as well. Yes, all my chemo will be infused intravenously (IV). I will be finding out what type after surgery but I do know that lots of the chemo drugs have effects on your heart so that is a huge concern on mine. On a lighter note, I will be able to pick out the long beautiful hair that I have always wanted!! The few wigs that I have tried on are gorgeous and you honestly can't tell that they are wigs. Any other responses will be greatly appreciated! And to those of you that I don't know, I look forward to getting to know you all over time. I won't be leaving the site for that length of time again,, the only way I will is if I am physically unable to get on. Best wishes and thanks to you all, Danelle

Has anyone had experience with Chemo and POTS? I have been diagnosed with breast cancer and I am having surgery next monday(which is gonna be bad enough with the Pots) but then I have to go through 6 months of chemo then 6 weeks of radiation therapy. ANy advice would be greatly appreciated!! Hi to all my friends I haven't talked to in forever. Sorry I disappeared for a while but I am back!! Danelle

Thanks for all the detailed responses. Don't know if I am gonna go through with it or not just yet because I am so POTSY right now anyway. BUt these responses give me something to think about. Hope all is doing lets POTSY than me and Derrick He has already missed 5 days of his senior year d/t the POTS Can't get meds regulated. He is starting to get pretty depressed because he is very social and loves his classes this year, plus it is his senior year. If we can get him through until Dec., he will be done with high school. Wish him luck and those of you who pray, please say a prayer for the both of us to improve. Thanks to you all, you are the greatest, Danelle

Hi just wondering if anyone has had general anesthesia and had complications from it or surgery itself. I may be having surgery soon and was just wondering how POTS patients handle being "put to sleep". One of my main concerns is BP and HR of course but not only during surgery but for a day or two after. Does it make the palpitations and BP worse for a few days? I know I will need fluids and probably closer monitoring but what type? And is doing it in a dr's office safe for us???? In case you are wondering what type of surgery-vaginal(hopefully) hysterectomy, wisdom teeth cut out and extracted and later on breast augmentation. Hope all is doing well, haven't been on in a while. Thanks, Danelle

thanks girls give me a day or two to read over it and i will get back to you!! danelle

I know this has been a topic before (I think) but anyone who has beento the clinic and actually went through the experience, I would love to hear how it went for you, what they do, what you found out, etc. I have read about it on the website but they don't go into details about what they do, etc. Thanks my dear friends, Danelle

Does anyone know when they will be doing the research project? is it too late to apply? It doesn't say on the site, atleast I didn't see it anywhere. Thanks

Thanks to the two of you who responded. Sue, he couldn't handle the extra 20mg, it gave him severe nausea and a major migraine I hate that he has to go through his senior year like this too. Rita, Thanks for the tip, I never thought about that but it is always a possibility. I really appreciate that info!!

Hi all, have been out of commission for a while, still kinda am but have an important question. Most of you know htat I have POTS as well as my 17 yr old son(dx in april) too make this as shor t as possible-this is his med regimen for the moment: 1. Toprol XL 37.5mg once a day 2. Florinef 0.1mg once a day 3. Wellbutrin 100 mg once a day 4. Celexa 40 mg once a day 5. Klonopin 1-3 mg once a day The situation is we are trying to get derrick's sx under control-school starts next week. He seemed to be doing "OK" on this for just a little while but his depression that he had prior to his POTS dx was pretty severe. He was on zoloft 50 mg once a day and was on it for 3+ yrs and did fine. His dr slowly weaned him off and put himon the celexa and the wellbutrin. this has all been since april. he has slowly progressed back to his depression-almost to point where it was but not quite there YET. I requested to go back on zoloft yesterday evevn though i have heard that celexa is better for POTS but it isn't working for him. the dr wants to up his celexa to 60mg even though he says the max dose is 40 but one trial said if you up it to 60 he could improve or everything could get worse(depression, anxiety, agression, POTS) Derrick also requested an increase in his klonopin due to his anxiety level r/t the POTS. No go per the md. I don't want him on it anymore than the md, probably less but I know that it is the onlythng that keeps me out of the ER many times. ANd it is ont he list of tx for POTS. Questions 1. do you all think 60mg is way too much-although derrick has a high tolerance for meds 2. I know the down side to benzos but he really neeeds more, wehave both expressed it many time to the dr but like i said, no go. 3. He had him start clonodine patches the other day at tthe smallest dose but cause major migraines and severe nausea-probably because he was already on toprol. so we stopped that one now he has put him on 3mg melatonin. seems like a lot of meds for a 17 yr old-or anybody for that point but I know he was doing what he thinks is best for Derrick. he keeps in contact with dr grubb and gets suggestions but I just think he is on way too much, I know the dr is doing what he thinks is best and he is wonderful . Having said that, I am his mother and a nurse and can see what isgoing on-which I have expressed but I am not getting heard-I don't think. I just want Derrick to get better for his senior year. My concern -weill is the total package for him. the depression, pots, anxiety, etc. What is a mother to do???? trust my instincts or go with the dr???? Please help. We did start the 60 mg last night and the melatonin. Derrick was up at 4 am this morning and didn't go to bed til after 1. thanks friends, danelle

Sorry I couldn't get back to you all yesterday, I feel really bad about it. I will tryand answer your questions now. Ann, I am just having my regular severe POTS symptoms that aren't getting any better and lots of problems swallowing, losing weight, and the list goes on.......I spoke with the Dr this am just for a brief minute, she said she didn't do the pattern test that that is one of the tests that the rheumy will be running. She was able to get me in this Friday at 0800 (except for the time I don't do well at all int he am but I will make it there anyway). I am not worried about it at this point (whihc is really odd for me because I am so OCD but for some reason Im not)-doesn't do any good anyway Nina, Thanks for all the info, I'lm gonna check out the sites as soon as I am done posting I will let you all know something on Friday after my appt. Steph, Thanks for remembering Derrick . Thanks for all the info also. I don't think I have EDS, never been told I do but that is something I will bring up on Friday. Do you have any other suggestions on what to ask? I've never done this before so I am going in "blind"-boy I sure have lost my nursing skills..............BUT I will be sure that she is thorough. I guess I just need to do some research before I go in so that I know she is being thorough Ariella, BOy, this is really interesting. SOunds like lots of people with POTS have had elevated ANA's at some point due to something or another-kinda makes you wonder I know my Dr told me to expect a slew of blood work to be done-I hope the nurse is a good stick because I haev no veins to find-they love to hide Sunfish, Thank you for your reassurance. I hope to find out some answers soon. Can anyone tell me what to expect-other than bein g drained of all my blood and any pertinent questions to ask? Thanks again, you all keep me going, Danelle

hi all, thanks bunches for your replies so far . i am sorry I don't feel like answering all the questions right now but I hopefully will feel up to it later this evening. i am sorry about that because youall have been SOOOO kind and show so much compassion. I am concerned but apparantley not as worried as the dr.(too tired to worry ) what will be will be. I am ok with it rigth now so whatever you all want to tell me is so much appreciated. I promise to answer all questions either this evening or in the afterneen tomorrow-I'm kinda trying to keep this from my family because they worry enough, they don't need any other things to worry about until i have a definate answer. LOTS OF LOVE TO ALL OF YOU, danelele

MM, How high has yours gotten? Don't know the pattern yet, waiting for the Dr to call back..................................

Hi all, been out of commission for a while. I just got word that my ANA was 1:1280. The other one I had done a few yrs back was NML. I am being sent to a rheumatologist. Does anyone know if this NORMALLY means Lupus, MS, scleroderma, cancer or what? I know no one can diagnose me until I see the Dr but was just wondering. My family Dr did tell me there is Noway that my fibromyalgia could cause it to be that high. Didn't knowif anone may have any ideas, not sure when my appt is yet the dr is calling the rheum to get me in sooner than her first availavle. Sorry for all tot he bad spelling hope you can read it. Don't anone worry, I won't take what you say literally (I mean this in a nice way) until i see the dr, so I won't be freakingout , it's ok for anything you have to tell me andit is all aprreciated. Very POTS today Danelle

Janine, I admire you for being able to "talk" to us through your spell. Unfortunately it sounds like so many that I go through too. Did you have too good of a time last night? (remember our phone call the other day)-LOL I am so sorry you had to go through that but you really did say everything that most of us feel while it was happening. I knew from the first moment I talked to you that you were such a strong person. Call or email me when you can and I will look for you on IM when ever I get on there. Hang in there girl, you did a superb job!!!! Love, Danelle

Hi Mary, I haven't been on in a while-obviously. Haven't really felt like it but i do check in a read a few posts from time to time. also, I managed to make it down to the lake since last week for about 5 days because derrick really wanted to go and so I just sat in the camper. long story about what is going on with me. in a potsy spell right now but wanted to let you know I am still alive. will catch up with you soon when I cant hink better!!! LOVE YA, Danelle

My Dr started me out at 5mg of Celexa, after 3 weeks I went to 10 mg. That is where I am now. I have been on 10 for about 3 weeks. I do get headaches and nausea but it is starting to subside some. I go back and see my MD today so he may increase it again. I am like you, terrified of meds and their side effects but I am at a point that I have nothing to lose at this point becasue my POTS is so bad. Good luck and let us know how you do. Danelle

Hi all, just wanting to get an idea of who uses wheelchairs and when. Janine's post got me thinking. I really don't want to use one but I bet I could do a lot more if I wouldn't be so stubborn and just use one. I just can't seem to bring myself to do it It's silly I know. Thanks, Danelle