wareagle

Hey Emily...are you okay? I haven't seen you on the boards for awhile and was wondering how you are... Don't mean to be nosey ....it's just not normal for you to be gone for so long...I hope everything is okay..check in when you can!! Love and hugs to you all... M

Blondie, I just wanted to caution you about the pepto...I had simular problems back in Dec...lasted around 2 weeks..when I told my doc. he said to use Immodium NOT pepto..apparently pepto contains asprin which can make diarrhea worse. Hope you feel better soon!

Superpooh...I LOVE it!! Thanks for actually responding to this guys..I know it's a silly topic...I just couldn't help myself! I think you all have excellent ideas...what a group we could be!! Nina..in my book you are "mighty mouse" through and through..an inspiration to us all! I warn you all...this will not be the last crazy topic I post...I LOVE this chit-chat forum !

You will be in my thoughts and prayers Mary... take care of yourself.

Hello my Potsy friends...okay...it's after 3:00 in the morning and I'm a bit loopy and can't sleep...so consider yourselves warned! I've been watching a lot of "comic book" movies lately..you know like "spiderman" and "the X men".."Electra"...and every time I see one of these shows I get to thinking of how it would be sooooo cool to have super powers. So I've been sitting here...not sleeping ...and contemplating which super powers I would possess if I could choose any I wanted... I think I'd definately want to have extraordinary vision..and be able to even see in the dark...I'd want to be really flexable, have good balance, and be able to do some insane martial arts moves... I'd want to be able to run and move super fast..(I've never been able to run..even when I was in good shape and I've always wondered what it would feel like to just take off like that)...and I think I'd like to be able to heal rapidly (you know like if I got injured while fighting for "good" I could heal faster than normal).. Those are definately powers I'd love to have...of course I'd also have to have a really cool "super hero" costume...I really like the look of leather but I think it would be really uncomfortable.. So..what "powers" would you guys wish for?...what would you call yourself? Okay..time to try and sleep again..good night my friends...here's to dreaming BIG!

I'm sorry you're having a tough time Rose...I'm sending hugs and good thoughts your way. I thought you might want to ask Dr. G about Strattera...my doctor has been discussing it with me although I have not tried it yet. Apparently it does the same sort of thing that Riddelin does BUT it is not a stimulant and works a little differently. I hope you are feeling better soon !!

I'm so excited for you Mel...I hope the Procrit works for you!! Jacquie, Procrit's "intended use is to increase RBC count in cancer patients following chemo..it's very expensive and insurance co. tend to cover it only under this condition. Recently, however, more and more people with POTS who have clinical proof of low blood volume are being given the opportunity to try it. It's exciting b/c several of the folks on the board have had a lot of success with it.

Hi Tea..it's so good to see you on the board again!! I'm sorry things got to be overwhelming but you should be very proud of yourself...you clawed your way outa' the POTShole and didn't let it stop you from trying..you are such an inspiration ! I know you are frustrated right now but I think it's great that you know you CAN do the work thing...even though working full time took up ALL your energy. At leaste now you know what you're capable of and this time you can look for opportunities that won't stretch you too thin... It's good to have you back!

I lost around 25 lbs. rapidly when I became ill...it stayed off about a year then started coming back with a vengence. I feel my weight gain is a combo of my meds., inactivity, and diet (I had gotten into a habit of eating/snacking late at night b/c I stay up a lot later now). Sooooo now I'm about 30 lbs. over my "ideal" weight...If I can lose at leaste 20 of that I'll be happy.

Just wanted to chime in a let you know that there have been several discussions about the anit-body test and plasma exchange so you might want to do a search..or maybe someone can pull the discussions for you..I would but don't know how . I'm also interested in having the tesing done and I know that several others have been tested so hopefully they can give you some more info. OH..if you look at DINET's main section under possible causes the anti-body test is listed with the ph. number for Mayo!

Hey guys..well this isn't really all that exciting but I'm proud of myself.. It has been over two years since I got my hair cut professionally...I've just been hacking off a few inches every few months myself..It had grown out from my "pre-POTS" days and has been just blahhhhh...not that my hair is all that important given the other issues I'm dealing with. Since becoming ill I don't wear makeup or fix my hair and the only clothes I wear consistenly are PJ's..and in a weird way it has been a bit liberating...truly not caring what I look like...but sometimes I miss being "pretty" you know? So, my hair stylist whom I adore, has offered multiple times to come to my home and cut/color and do whatever I wanted to my hair..the only problem has been every time he's been schelduled to come out I've had to cancel b/c I don't feel well enough to sit up ! This weekend however I sucked it up and told him to come on out and we'd just do what we could... My mom was great and let me sit in the living room in a comfy leather chair so that I could sit cross legged and be more stable and my stylist was very quick. It was fun! I've really missed doing simple things like that and being able to interact with people..and my hair looks great!! It feels so good to have a style again..even if my mom and dogs are the only people seeing me! He was so fast with the cut that I may try to actually go to the salon next time and get OUT of my house . So..Yay!!!! I know this is very trivial and I hope no one is offended by my excitement over this little thing..but I figured if anyone could appreciate what an accomplishment this was for me it would be you guys! Love to you all!

Hey Dizz, I'm sorry your feeling bad again..but I'm glad to hear your doc. is working with you for the IV home treatments. You said it's going to be hard to get insurance approval and I was wondering if you've ever had a blood volume test (I can't remember if you have or not)...maybe if you're doc. could show that you have low blood volume they'd approve the IV as an inexpensive treatment for that as opposed to dehydration?...I think the fluids help blood volume..I could be wrong. I hope you feel better soon!

This is so exciting! I can't wait to see the movie...you must be so proud!

Hey guys..thanks for chiming in...it looks like this isn't a med. widely used for POTS..at leaste not yet. My doc. (who also has POTS) began taking Strattera recently at the recomendation of his doc. and he's had some noticeable improvement. Apparently Strattera is NOT a stimulant like Ritalin and the other "ADHD" meds. It works to promote norepi. and block re-uptake of NE..BUT the big difference is that it only does this when the body needs it as opposed to continuously promoting NE whether you need it or not..at leaste that's what I understood when my doc. explained it. I've been trying to do some research on it but it's still a relatively new drug and there's not a whole lot that I could find... I probably won't be trying it any time soon...I'm such a weenie when it comes to new meds I'm lucky in that my doc. knows this about me..so he always approaches me slowly and lets me think things over before making a decision...still it's nice to know there is another option for me as far as meds. go.. lately I've been frustrated b/c I feel I'm running out of things to try from a medical stand point and my body is just so darn sensative to EVERYTHING !! I am starting to try to do some reconditioning now...I got a recumbant bike and was able to do up to 20 min. on it 6 days a week for three weeks!!!....then I couldn't do anything for a month...but now I'm getting back on it again so maybe there's hope for me and my thighs yet Love to you all!! PS. Ariella..you may want to ask you daughter's doc. about the Strattera...I'm not sure how well it is at treating ADHD when compared to the other meds. out there but it can't hurt to ask! I hope she's feeling better soon.

When I was first dx. with POTS I was told by my doctor to drink 3 liters of fluids a day... It is also important to add electrolyte drinks..I use propel b/c there's not as much sugar in it...BUT.. the main thing I'm supposed to get is water. Hope you get some answers and are feeling better soon!

Without a doubt I'd get rid of this "heavy" feeling I ALWAYS have...It's like every bone in my body is made of steel and the ground is a giant magnet...even when I'm "just sitting" I still have to struggle to remain upright... Oh...it would be sooooo nice if something could make this go away...

Congratulations on your improving health Carmen!! I know you've been through a lot and I'm so happy for you! Thanks for sharing your success with us.

Hi all..I saw my doc. today and he brought up the possibility of trying strattera with me..I told him I'd do some research and think on it awhile before making a decision. He says it helps with fatigue AND can help with bloodpressure issues ect. I did a search on it and only found it was mentioned in passing..no discussions... So, if any of you have any info. or experience with it please let me know! Love to you all!!

If I'm not mistaken.. I THINK on the DINET website under list of possible causes autoimmune disorders are listed. For instance one might develope POTS following the development of Lupus or another autoimmune problem. I'm not sure if there's research on the link between POTS and autoimmune issues..but I believe there definatley is a strong connection at leaste for some of us. My doc. believes I may have some type of autoimmune response going on and that's what's causing the severity of my POTS and I tend to agree with him. It's apparent that my immune system is in "overdrive" and has been for the past 2.5 years...I haven't gotten sick...(knock on wood)..since developing POTS back in '03...and the most obvious "cause" of my dysautonomia was a virus..probably EBV. With that said..I've never had any abnormal levels when tested for autoimmune issues...but I do think there is something else going on. Welcome to the forum!!

Welcome home Dizz! Sorry you had a hard time with the psych. but at leaste they "cleared" you of any mental disorders and focused back on your relevant symptoms. I'm so glad that the fluids helped and you are feeling better today..I was worried about you! Be sure to get lots of rest and take care of yourself!

Either way is fine with me... I understand that it would be easier for readers to access what they want by having seperate sections but it seems like it would be difficult to determine what's "off topic" and I wouldn't want the moderators to be stressed more than you guys already are... With that said..if the moderators WANT to do a seperate section then that's fine too... It seems there's been some tension and misunderstandings over the past few months and it does sadden me that some folks have left our "community"....I commend Michelle, Nina, and Mel for moderating this forum..I know that at times it is difficult b/c you can't please everyone... This site provides me with so much... so Thanks guys!

Diz, I'm sorry you went through such a scary experience ...I'm glad you made it to the docs. though and I hope they can come up with something to help you. Have you had any luck with IV fluids? I can't remember if it was you or someone else..but there was a disscussion on medaports aka port-a-caths? Maybe that would help you stay hydrated during these horrible episodes you've been having... Get some rest and I hope you're feeling better soon!

Hey honey!! I have no advise to give...just wanted to say "sorry about your PEE" I hope they get something figured out soon... Okay..I'm a bit loopy tonite..I just like saying pee..peepeepee... Seriously..hope you feel better soon

Sorry about your PT morgan I know it's frustrating...I haven't even attempted PT yet...I figured I could do a lot of it alone in my bed... YIKES..that sounded naughty!! I'm talking about leg lifts and ab crunches of course! Interesting about the possible new angle with the mito thing..keep us posted.

Welcome to the board! I've been feeling like pooh and have just been lurking so I did not get to say "hi" when you first posted. I'm not sure what you do for a living but have you considered working from home in some capasity? It may not be an option but I know there are more and more companies employing folks that work out of the home. I'm sorry you're under such stress.....I can't imagine having to leave my house...much less working . Wow...how do you spell capasity? This can't be right...o-well..Sorry..I'm a little groggy right now and I've never been much on spelling!