wareagle

Go get em' Morgan!!!

Hi Linda..I think it's great that you have the opportunity to educate people on this condition!! I was wondering what you used to compile your info. packet..do you use the info. on DINET or did you get it somewhere else? I often refer others to this website..but feel it would be a good idea to have some things printed out to present to others when needed. Good luck with everything!

hello all..yes i am here too..thanks for asking Emily..i'm glad to see you're posting a little more these days. we should rename this place "pots valley"..i'm currently living on the corner of "fatigue street" and "queasy lane" ... every now and then I take a stroll in "tachy park"..at leaste my neighbors are nice! oh, Gena...i was wondering if you'd tried clonodine yet? my brain's mush right now and i can't remember if you have or not. anyway..it's good for breaking up that sympathetic tone..i only take it at night..but it seems to have helped a little with my tachy and i haven't had any bad effects. praying for better days ahead for us all...

morgan.. i'm sooo glad that you are taking action and holding those idiots accountable..i was so angry when i read you're post..i wish i could write more but i feel like pooh right now. it's time that we as patients stand up to docs. and make them realize there are indeed consiquences for their actions...(do you like my spelling?...) good luck with everything morgan..hang in there

Morgan..I cant's stop laughing at the thought of someone doing non-touch "physical therapy"...and chanting...all at the same time...how DID you keep a straight face? Before anyone gets offended..I have nothing against alternative and Eastern medicine..the visual just made me laugh... BYW..did he offer you urine to drink while he strengthened you muscles through humming? Okay..I'm starting to get loopy.. I didn't know you had been a nurse..I'm sure you'll have no problems teaching your hubby the ROM..good luck..I hope things start to improve for you! Thanks for the laugh!!!

Radha, I know exactly what you mean!! I was thinking along the same lines the other week. When I first became ill..I wanted to fight and fight and fight untill something made me better..I didn't want to be sick..I didn't want this in my life..and so I fought it. Then..it became apparent that it wasn't really in my hands..I really have no control over this...I mean I can take the meds. and the salt..and the water and do things to promote healing..but ultimately I don't have control over what's going to happen in the future..will I get better..worse..I don't know. So then I lapse into acceptance..but I understand what you're saying..where is the line between accepting this condition vs. giving up on the dream of remission? It is a fine line..one that I've also been walking lately..it's like you almost don't want to keep pushing or trying new treatments for fear that it won't help and then you've wasted you're time/energy...and hope that THIS time something would work. I think you actually answered you're own question by posting your fears hear..the answer is HOPE...no matter how hard this gets..or how long it lasts..or how much we "accept" this illness..we ALL hold fast to HOPE..hope that we'll be given the strength to endure..and that some day things will be better...and you still have that Radha..and as long as you do..you will continue to strive for improvement...weather you do it consciously or not!! When you feel yourself slipping past that line of "acceptance" do something..anything..to reassure yourself that you have NOT given up..like Gena suggested..even set small goals. Sorry to ramble...I hope some of this makes sense!

Morgan, I would suggest your PCP order cardiac rehab... (I think that's what it's called)..and Range of Motion therapy..there are two kinds of ROM..assisted is when another person guides your limbs..and active is when you're strong enough to do it with little or no assistance. Hope this helps..and I hope that you're back and groin start to feel better soon!

Hey Morgan..don't be discouraged by what the PT said! I used to work with them all the time when I was a Speech Therapist. I think maybe what they mean is that right now ACTIVE physical therapy would only do you harm..(ie..like trying to run before you can walk). You may want to ask them if they can create a plan for you to do assisted and/or active range of motion exercises (ROM) at home. These are basically stretching, contracting, and extending your muscles. From what I remember...ROM therapy was usually done for inpatients to prevent muscle atrophy and contraction and to build up to more aggressive therapy. I don't recall it being something they did a lot for outpatients though. Here's wishing you brighter days ahead love!! PS. Urine...huh..I think I'll stick with my Propel..although I've heard it can be used as bleach once it's sat for awhile...but I wouldn't want to drink bleach either.

Hi Sun..glad to hear you are feeling better today! Just wanted to let you know my bp doesn't really drop all that much either..at leaste not all the time. My doc. explained to me that the criteria for POTS really looks more at your heart rate. ie. if it increases by 30bpm. from laying/sitting to standing..or goes over 120bpm then you can have a dx. of POTS. I think I've got this right..if not someone feel free to correct me!! When I was originally evaluated at Mayo in Jacksonville that was something their specialist actually ignored..b/c my bp is always in the low range and there wasn't much change during the brief TTT they did..BUT my heartrate did go up to reach criteria! I was lucky to find a doc. that knows his stuff and had additional testing to determine that YES I do have POTS. Sorry..I'm babbeling now..is that how you spell that..babbeling? Okay..enough! I hope you continue to feel better!

Hi Sun..I hope that you're beginning to feel a little better now that you've had and iv and some meds! I had to laugh when your Cardio. Doc. said that nausea and fatigue aren't symptoms of POTS..I used to have constant nausea..and still have the fatigue. You definately did the right thing by seeking med. attention..even though we have lots of symptoms with POTS it's always good to get things checked out! I know it's difficult when you run across doctors who really don't know about POTS and instead of addmitting it they just dismiss it! I've actually started educating my doctors with info. from DINET. So far, most have been very open to checking out the website and have been very receptive to learning more about it. Perhaps you could print some of the basic info. out and bring it to your student health center..or if you find another doctor before your initial appointment ask them to look at the DINET or NDRF website for an overview. There are also a listing of "specialist" so maybe your docs. could contact one of them if they have questions. Anyway..hope you're feeling better soon..it sounds like you usually do pretty well..bike riding and going to school..I'm jealous Don't get too discouraged..like the others said you may have just over done it and caused your body to throw a tantrum! Keep us posted, Michele PS. What psych. class are you taking? It was my minor at Auburn..my favorite was abnormal psych.

I'm with you on the job issue too! I'm 28 and actually a licensed Speech Language Pathologist and hope to someday be able to return to it..I do miss it a lot. I've also thought of trying to find something I could do from home..I'm not sure I'm up to it yet..but I thought when I start to feel a little stronger it would be a good start to getting back into the work force. I did a search on yahoo to see what I could find..I agree most of these sites look pretty shaddy! I did find one though that looks very legit..it has actual links to companies that hire contracters to work from home. Some of the categories were..med transcription, data entry, telemarketing, research, grading national exams..ect. I checked some of the companies out and they appear to be reputable...some even required college degrees. If you're interested shoot me an e-mail and I'll give you the name to the site! I don't know if I'm allowed to post it and I don't want to get Nina mad!!

Hi Jenn..I'm so happy for you! It helps a lot to know what's going on..and even better to know that the odds for improvement are in your favor! Keep us posted on your progress!

Congratualations on finding a doc. who's knows what's going on and will take you and your symptoms seriously!! I hope it all goes well for you..Good Luck!

Hi Roselover..I take florinef..but I can only tolerate a very small dose! I take 1/4 of a 0.1mg tablet a day. A whole tablet knocked me out..and the 1/2 tab made me anxious and shakey...I don't seem to be able to tolerate meds. as much as some people on the forum. It has helped a little bit..in combo. with salt tablets..I may go to twice a day eventually. Hope this helps!

Hey Sophia! No need for an apology..I didn't receive any personal message anyway! Trust me..I don't like the idea of glue traps either..I just remembered that's how the exterminators dealt with the problem when I was younger. I guess it's the safest method to use around children and other animals...although not so humane for the mice! Hope everything works out for you..and your cats! -M

Hey Sophia..thought I'd make another suggestion..have you thought of using the glue boards? It's actually kinda' disturbing to witness..but it's safe for your cats and any other animals..no chemicals involved. We had a "mouse" problem when I was younger..we lived in an apartment complex and they used the glue boards to catch and remove the critters. The "traps" are basically a shallow dish filled with some kind of sticky material..once the mice walk on it they become stuck. The only downfall is once the mice get stuck..someone has to take them out of the house..they're usually still alive..I'm getting a little nauseaous talking about it..I have this crazy fear of mice! Anyway..I hope this helps! Michele

I'm speechless and a little sick to my stomach after reading about your experience! I'm sooo sorry you went through that Ernie! I'm floored by the way you were treated..I just don't understand how people can be so infuriating . I just wanted to letcha' know you're not alone in this...here's hoping you get some peace soon! Michele

THANK YOU..THANK YOU..THANK YOU!! I really appriciate all of your words and I've found hope in them. I know we all have out ups and downs..thanks for reminding me that I'm not alone!! Every now and then I just need someone to kick me in the bum and remind me that there is still happiness in this life! Love to you all! Michele PS. Katherine..I live on the Gulf Coast..near P-cola FL..it's a beautiful stretch of beach..even after hurricane Ivan!

Warning..this is a vent/whine session..read with an open mind! I don't know what to do..lately I just feel like giving up any hope of recovery. I don't mean to whine, but I really need to vent! I first became ill in May 2003 at the age of 27. I had to quit my job as a Speech Pathologist and after 15 mths. I was dx. with POTS. I've been on meds. for aprox. 8 mths. I'm only able to tolerate VERY small doses of florinef and clonodine. At first, I felt things were getting a little better, but lately nothing seems to help. I have not left my house (except for doc. apts) in 1 1/2 years. I just always feel so unstable and offbalance, and even though I don't faint, I'm scared to go anywhere. I've thought of using a wheel chair, but even sitting down I feel "dazed" and unsteady. I feel like such a WIMP!! I know that most of you at leaste go for short walks or run quick errons...even take trips and go to school/work..I wish I had your drive and ambition!! (I used to, but I seem to have lost it somewhere along the way) I know that I have to somehow start reconditioning myself and have been reading the related posts. I've also thought of consulting a nutritionist, but I've just been so tired. I know this sounds crazy..but a part of me is reluctant to try the exercise and nutrition angles out of fear that they won't help and then I'll be out of options and have to accept that this is it for me. I'm just scared that I've been down sooo long that it's impossible to pull myself up again. It's so hard to hope/imagine that things will get better when I can't remember what it felt like to be normal. I'm 29 now and have been living with my mom for almost 2 years. Most days I try not to think of the future or dwell in the "why me" mentality, but every now and then I just can't help it. I don't have a husband or children and b/c of this condition I feel like I'll never have that opportunity. I'm scared that someday I'll be alone and won't be able to take care of myself. I know this sounds so depressing but I just needed to say it and get it out! I know that things could be worse..I'm very fortunate to have my mother and great friends..it's just hard for them to understand..that's why I came here to express my doubts and fears. This whole experience has been humbeling and bizarre. Even after 2 yrs. I have moments of shere disbelief..I can't believe this has happened! I know you all face your own battles everyday and I thank you for taking the time and energy to read my rant and perhaps respond. As always, I'm open to any advice or personal experiences you'd like to bless me with! Feeling blue at the beach, Michele

Hi all..just wanted to add some input. I also crochet and have thought of donating work. I use alot of Lion Brand Yarn and get a weekly newsletter from them. I think it was last Dec. they posted info. on several organizations that accept knitted/crocheted items for various purposes. One did blankets for children..another accepted scarves ect. for the homeless. You may want to check their website to see if the links are still there..it's www.lionbrand.com. I know that one did a simular thing to what you're suggesting..you could knit/crochet squares then send them in and someone would create a blanket and distribute it as needed. Anyway, thought you might want to check it out!

Hello All! Just wanted to wish you a very Happy Valentine's Day! May all of you be touched by love today and all the days to come! You are all such an inspiration to me..even on my bleakest days..I want to thank you! May we all have more good days than bad..and more love and kindness in our lives! Michele aka. wareagle

Thanks for your input Gena and Rachel! To answer some of your questions..my most intense symptom is the feeling of being pulled down when ever I sit or stand. I feel like I'm constantly fighting to stay upright..get dizzy and dazed..and Lots of fatigue! The clonodine has helped somewhat with my anxiety and tachy episodes..but I'm only able to take it at night. As far as the cause for my POTS..I had a B12 deficiency and then it appears I contracted a virus..possibly EBV. I plan on discussing other factors that may have led to it. I feel I've had some form of this all my life..I've always been fatigued and had some exercise intolerance..but I've always been 100% functional untill May 2003. Are there tests to determine predisposition..or genetic factors? I also feel my period is one of the main things contributing to my lack of function. I always start feeling worse the week before..then during I'm still bad but a little better..the worst is the week AFTER my period..I can hardly get outa' bed. Then I may have a few days where I feel a bit better and it starts all over again! Sometimes I wish I were a guy..perhaps I should increase my testosterone levels..but then I'd have to shave my face! LOL Thanks again for your help! I welcome any more knowledge or suggestions!

Hi All! I was hoping you could help me compile some questions for my next doc. visit re: my next step in treatment. I was dx. in Aug. and have been on 1/4 tab of florinef and 1/4 tab clonodine for several months. On my last visit the doc. added Midodrine which I've tried for about a month. The Mido. doesn't seem to be helping and I even feel a little more "dazed" when I take it..so I don't think I'll continue with it. I haven't been able to tolerated higher doses of my other meds. and am beginning to feel hopeless. I'm still "house bound". Some days I get outa' bed more than others..but for the most part I still feel so "unstable" that I'm scared to be up much. My body is very deconditioned but I don't have enough "okay" days to really start reconditioning it..I'm scared this will never end!! I've been sick over 1 1/2 years..and wonder what's going to finally start working for me! Any suggestions on other treatments? I do take a salt tab a day..prob. need to increase that..I was also interested in the "nutrition" discussion on the board. For those of you who have been able to return to a somewhat "normal" life..what helped you..and how long did it take? I know it's all very individualized..but I'm looking for some HOPE!! I'm going to discuss skipping my periods every other month with my doc. to see if that will help..any other suggestions that I can discuss with him? Thank you all for taking the time to read this! Have a great day and..WAREAGLE!

Hey Jill! Just wanted to let you know I also see Dr. T. I like him too..he has a unique understanding that no other doc. has. We must live near each other! Perhaps we can "chat" from time to time. I'm glad you're finally getting some answers!

Yes..Midodrine..sorry I mis-spelled it! Any way to edit the post and change to correct spelling? Thanks for the input!