blackwolf

thank you and passing it on blackwolf

what else do you do? check the what helps page for other ideas. blackwolf

morgan, you and i should bunk together, i'm still slippin'. tried so hard at the special olympics, our church group served lunch to the participants, their families and the volunteers, it was a blast, we took our kids and some neighbor kids, they all had so much fun, plenty of leftover hot dogs to eat. not me, i swear! but since then i have been just surviving. trouble with everything, walking, talking, pain(thank goodness for TENS unit), nausea, "turkey trots", shaking, tired, sleeping alot.... on and on. and just for fun, lightheaded and dizzy and whoo-hoo, a ssdi review, am i ready to return to work, please.... nite all, and i think i need to stay away from the computer for a while, i'll miss you folks, but i must take a break from the screen. may "lurk, but not chat.. blessings on us all, in the hole or out. blackwolf

dearest morgan, all i have to say is WHAT THE *#*#!!!!!!!!!!!! I REALLY CAN'T THINK OF ANYTHING TO SAY EXCEPT GO FIND A GOOD LAWYER AND KICK SOME A##. prayers and blessings for some peace, blackwolf

i have this also, usually in my left leg. i "tumble" about 2 a week lately, though the last few days have been really shakey, no falls, but then i'm using to canes. blackwolf

dear mary, the TENS unit has been a life saver. i even sleep with it on. yep they showed me how to clean it, they also suggested some rubbing alcohol, if they just won't come clean with water. though i'm back on toprol xl 50 mgs, i have realized that i might have been crashing before i cut back. since the trip out to serve lunch at the special olympics, i have barely hung on. i need two canes to walk any major distance. only good point in the last few days, the ativan has helped me sleep. at least for a few hours, which is better than before. thank you every out there. blackwolf

i haven't driven for about 3 years, and at this point, don't plan to. blackwolf

dear morgan, my heart goes out to you. unfortunately, i have had a similar reaction, including seizures(3) from a med that was supposed to make me all better. two lost days and a phyc. review i has told i had had some kind of allergic reaction and the er doc was fired. though i dought you will be so lucky. i can only hope that we all can one day recieve the treatment we deserve. blackwolf ps-i think i'm about as low as you are, over did it this weekend(helped serve lunch for the special olympics) and can barely walk with two canes. i have only 2 choices of er's here and avoid them both. only under the most dire of circumstances would i even go. peace and rest for you as you recover.

went back up on the toprol, just to uncomfortable. amy- how much and how often do you take the midodrine? i take 2.5mgs, as needed. i also backed down on it recently, the side-effects suddenly had become really hard to handle, i felt like i had bugs crawling all over me all the time. you might just need to back off on how much you take and when, i have to stopp taking it about 6:30 at nite to let the stuff wear off, or i just don't seem to calm down well. rita-gave up the goat. just couldn't hack it, i'm wimpy. just to much screwed up to deal with that on top of it. i'll think about doing it later. dawna-thank you too. just going nuts over the changes in the last few weeks, new drug dosages, new sleep pattern, triing to do more physically, just kinda pushed to hard today. went to help at a special olympics today, our church group was serving hot dogs, drinks and chips, things went smoothly, had my TENS unit on my back, really helped, but i think i pushed to hard and had crashed when we got home, i slept for almost 6 hours. still feel yucky, will head to bed soon, can't even think about going downstairs to shower. got church in the morning-won't commit on that either.. again, thank you everyone, blackwolf

i haven't layed down flat except for tests for years. and yes, i faint very rarely in the night, especially, as much as i get up. i use a 12" angle pillow turned upright, like this L\ and even use some extra pillows. you might also want to consider wearing light weight surgical hose at nite, i wore 30/40's during the day and 10/20's at nite. i no longer wear them at nite, but they helped back them. good nite and sleep tight. blackwolf

morgan, have you ever had surgery in that area? i often "tear" scar tissue, it is painful, very painful, and can last for 1-4 weeks. the only other thing i can think of are gut blood flow trouble. best of luck, blackwolf ps. i'm sorry anyone has to go thru all of this, least of all you. your plate is not only full, you need a large wading pool. also, how is Jake? hope he is doing better.

i did this very briefly when i first got sick, my pulse and bp dropped extremely olw. blackwolf

dear merrill, when this all started, i could be sleeping with a heart rate at 25-35 and get up and go to the toliet(4 feet away at the hospital) and have a hr of 160+. when i started on the toprol, things kind of settled down and on the norpace, things were pretty good. then the liver trouble kicked in and i had to quit the norpace and since then, i just don't seem to have the control i would like to have. and though i would love a cup of coffee, caffine and i "don't get along", my heart rate goes so high, and i just throw it up anyway. decaf, is my choice, but i also like decaf teas. on the good side, today i got my TENS unit, what a life changer it is. thanks all, blackwolf

thanks brairrose, but i seem to have hit bottom, ran the whole line and it was the one that worked at the time, not so sure i'm up to starting over again, mabey later. just seem to be spinning out of control over the last few days. meet my new counselor, very nice lady, very knowledgable for just having heard of POTS a week ago. she said she called around but got basicly no ifo from docs here, she asked who i saw and asked if she could talk with them about my symptoms, i gave her the ok. going to give ativan a try, baby dose, 1/4 of a 50mg tablet. if i sneeze hard it would turn to dust. well, i thought it was funny. anyway, thanks again blackwolf

i have, per cardio doc's suggestion, backed off on my beta-blacker, toprol xl. I was taking 50 mgs and went to 25 mgs. i take it in the evenings to i'm not so symptomatic at nite as i try to sleep. i expected to get more palps and tachy, which i did, but now i have also noticed a huge drop in my resting heart rate. i have gone from 70-90 to 35-55. my cardio doc was rather suprised- i also have a lack of heart rate increase the last few times i have done my excersises. i felt funny today during them and stopped, checked my blood pressure and heart rate, both were rather low- bp: 96/54 and hr:48. what is up with that? any ideas/ suggestions? i did the hole routine- water, salt, a little gatorade, rest with legs up, i never did finish the cardio part and jsut did my stretches. cardio gone on vacation(again) they said to stay where i was and wait for my body to adjust(this was the advise of the other cadrio there) what do i do? going to meet my new therapist(chronic illness counselor) and a little nervous-gee what a suprise.. kind of feel like i'm waiting for the "other shoe to drop", on my head that is. slipping back a little more-this hole is getting deeper neck is goofed up-pain adn muscle spasms really making what is left of my nerves frazzle sorry to whine, black-slippin' and slidin'-wolf

we had a cheaper motel, and bought most of our own food and made most of our own meals. we took a plug in coffee pot(great for boiling anything-we did rice and noodles in it), and a duel unit-griddle/crock like thing. health food stores abound there- though you might need to check around for prices. go to www.mayoclinic.org/rochestor/ scroll down and on the left you will see a listing for Lodging, click on it and you will find a lot of info. best of luck, blackwolf

if the full pantyhose are too much, try thigh high, i wear knee high as i just can't stand the pain of thigh highs or pantyhose. www.brightlifedirect.com has a wonderful selection at very reasonalbe price. blackwolf

another stupid question.. does anyone get pain that feels like there is a horrible tight band wrapped around certain points of your body(my worst are chest, and then all joints except hips, and lower arms and legs) that losen and tighten and stabbing, i mean s-t-a-b-b-i-n-g pain, the kind that brings tears to your eyes. mabey, i'm just nuts thanks, everyone of you. blackwolf

i'm for it. blackwolf

lost my grip... sliding backwards... LOOK OUT BELOW... WIDE LOAD COMING THRU!!!!!!!!!! had to give in to pain again, also had ssooo much trouble getting words from brain out my mouth, having trouble typing too have electic shocks going down both arms blackwolf

thanks corina, i'm getting higher, but slid down some today, took a turn tonight as the pain went way high, can't think of anything new but the pt i was supposed to do. my neck is really wacked as i have electric shocks going down both arms. melissa-yikes, i think you have had the worst of it. i just am not one of any more surgeries, not unless i really have to. my ability to type is gone again and i made so many mistakes reading during church group, i just had to give in and let someone else read. i'm sliding again.... look out below!!!! wide load on the way down!!! blackwolf

ditto blackwolf

i went to mayo in minnesota. though the testing was done well, i found myself exhausted from the fast pace and very poor follow up. i was kind of left hanging at the end with test results and a few suggestions. when things didn't work, i was also left hanging by my doc who couldn't get clear answers from mayo. just my two bits. blackwolf

i am reducing my bb now also. have felt more tacht and palps, but as i take it at nite, i don't mind the changes during the day so much. i also feel more tired. go figure blackwolf

Dear Roselover, I'm so sorry you had to go thru that. It seems to be a huge problem on the west coast. I am also in the search of a new local doc, though I have a few on the possibles list. Are you worried about traveling or the expence? Either way I may have some info you might like to hear about. National Patient Travel helpline 1-800-296-1217 National Assoc. of Hospital Hospitality Houses, Inc 1-800-542-9730 Both can help, though may take a awhile to get in touch with local groups. Also, many church groups have funding and help with any expences immediatly. blackwolf