blackwolf

dear em, thanks for thinking of me, i have been lurking and reading only on occasion as things aren't going the best, ie. nausea, severe headaches, neck pain, dizziness, lightheaded and balance along with trouble walking. i pushed to hard earilier this week and am paying dearly for it now. very tired, painful and all around POTSY. one good thing, on wednesday, last day of school for my kids, my son got a national academics award. very cool for us, suprise for him. got a 85% on his tests and also a 4.0 gpa. i'm so proud. between that morning and half a dozen appointments(monday thru thursday) i'm bushed. thanks for thinking of me, blackwolf

my two strongest ones are smoke and liver-i can see the smoke as i often have candles burning, but liver-my hubby only does that once in a blue moon. i also get fishy(smelly) and chalk, go figure. blackwolf

i'm so sorry you have to go thru this. i hope you get some better answers and a solution that works for you. i also don't faint while sitting, however, when i get up i do. here(south dakota), that is basicly enough to lose your liscence for 18 months, pending a note from my cardio, i cannot get a liscence again. peroid. at this point, i haven't fainted for several months, but with my near fainting, i am still "at risk" and will not be allowed to drive. personally, i have driven on 2 emergencies and would again, if i must. however, in my case i also don't feel it is safe for me to drive as i become very symptomatic. sunlight thru trees, flashing lights(you do know that in most states there are only two seasons, winter and road construction), stress from bad drivers, ect... it just isn't worth it, i feel so sick sometimes, just from riding.. blackwolf

congrats!!!!!!!! have a good time. blackwolf

i'm afraid of heights, but i had to move to a house with just 2 steps to get in. the appartment we lived in had 6, from the handicap parking no less. you had to walk around to the front of the building to get in without steps. i would rather suffer the ride in the elevator then do steps. blackwolf

my prayers for you all blackwolf

don't forget vitamins and minerals, they are part of my daily pills i pop and if i miss even one day on most of them there can be consequences. for me a daily vitamin with iron is taken with vitamin c with rosehips(500mgs daily good health), complex b vitamin 100(pain control and memory help), vitamin e (400ui supposed to help with detoxing the body, especially the muscles), and magnesium 1200-1600mgs(which helps as a stool softener and lowers my super-tachy episods). another thing i am working towards triing is omega 3 and 6 fatty acids. but i need to figure out how much i am already getting in my weekly diet. best of luck blackwolf

glad things went well, and sorry for the headach. congrats to Marissa for doing so well. blackwolf

my heart rate soars for hours after any kind of excersie, and then drops like a rock, as into the 30's, very uncomfortable. this can happen as soon as 2 hours or not till i lay down for bed(i try to excerise at a regular time every day, for me, about 11am) i sit thru most of my stuff except some leg lifts(holding onto a chair and with ankle weights), and some bands i got from pt, i drink plenty before and after the workout, if you can call it that. if i do everything, it takes me about 35 minutes to do it. blackwolf

HHHOOOWWWLLLLL!!!! greetings from one wolf to another. i would suggest going over the what helps page on the home screen to begin with. and then begin to try to get your diabeties under control, easier said that done. many of us have made huge diet changes just to be able to function. then of course i would suggest searching the posts for this discussion, i'm sure it has come up before. try seeing a nutritionist, and see if they can give you some ideas of what to eat, many of us have dairy, gluten and several other food allergies that can really knock you for a loop if you aren't careful. then find a good doc that knows what dysautonomia is and that is the hard part, good docs are few and far between, if you can give us an idea, roughly, where you are mabey someone can point you in the right direction. best of luck, black-digging for a shrotcut up-wolf

get really symptomatic if i lay down below 35 degrees and also if i turn to the right. go figure, blackwolf

i would say you are to dry. how much water/fluids do you take in? should be at least 2 liters a day, me i double that+ to feel good. also are you replacing your lost vitamins and minerals, they are so important to how you feel, also salt, to help maintain the amount of water/fluid you retain. as to the "cracks" in your skin, especially on your hands and feet, i was told they are from chronic low blood pressure and poor circulation. i am a huge fan of lotions. on my hands i prefer generic baby lotion, whick i use 6-10 times a day. on my feet, i use bath and body works shea butter cream for feet. i use a very heavy duty file(pumice stone would work also) and file down the tough outer layers of skin till they are somewhat smooth and flexable and then apply the shea butter cream, really thick and rub way) and then put on socks, this i do every other nite. it doesn't stop it but does help. good luck, blackwolf

merril. elevators are one of my best friends and worst enemies. riding them can be terrible in setting off heart rate, blood pressure, dizziness, nausea, vomiting, visual trouble.... if it is really fast, lordy, clear the floor, i can be down for 20-30 minutes from it. best of luck in your recovery, and if the headach doesn't get better, or you have other symptoms(fever, chills...) you might be getting a sinus infection. they are nasty here in south dakota. blackwolf

thank you corina and ling, still in the hole, but a little happier as i got a script today to purchase my TENS unit, it has helped so much still so sick, keeping it short on typing, but "lurking". cyber hugs to everyone, blackwolf

dearest mary and family, my heart and my prayers to all of you as you go thru this. my only thing to say is, isn't there anyone else to see? if expences are the trouble, email me i have some really helpful places to get help. blackwolf

dear ernie, nina and morgan(and everyone else) a followup with one gi doc would be possible about the middle of june, but i'm keeping the appointment just in case. i'm putting my hopes on my new internal med doc, see her june 1st. talked for a few minutes with the parish nurse that "hosts" the MSA support group(we are thinking of calling it a dysautonomia support group now, 5 with MSA, me-POTS, and one with just dysautonomia) and she has meet her before and even offered to go with if i want her to. i have printed a lot of info off of here and ndrf site also. i will be dropping it off in the morning with my other paperwork. it looks like a case file from heck, if you know what i mean. i did speak with her very briefly just to tell her my dx and what was happening, she said she would like to try to help me. if this doesn't work, i'm going to try Dr. Grubb's, the pastor at my church says they will get money from the ELCA to get me there and a place to stay and even try to find someone to drive me around, he will be my last hope as i would have to FLY THERE...ALONE!!!!!!!!!!!! o boy, spasms got to go thank you every one and cyber hugs for your support black-going to be sick -wolf

thanks everyone, things went a little better today, i'm just so tired, and cold. high here today of 50 after almost 2 weeks of 70's. wet too, over an inch in tow days and they say it might rain off and on till friday, whoo-hoo the 1st of June seems so far away, yet i know things can't get much worse and i can "only go up from here" again thanks everyone, black-sitting still and waiting-wolf

dear steph and morgan, his reply was that i should be seen and treated more aggressively for these bouts of nausea. i have seen two gi doc that believe i am doing pretty well and the compazine is all i need. just a note about this doc, after nearly 4 years of being seen by me, he still thinks(and this is with the dx from the Mayo Clinic in Rochester) that i am just a "nut case" and am seeking attention. of course, he also believes that once i lose the weight i need to, all my problems will just go away. i am going to go see a new internal med doc, a very nice lady, from what i hear, that does have some experance with dysautonomia. she currently has 5-6 patients with msa and one with a dx of just dysautonomia so i'm hoping that she will be on the ball and just what i need right now. i guess that i'm also depressed that i have hit a big hole just as things had started to get stabilized and now i'm sliding down again. one good note, the ativan my counselor has perscribed is helping me sleep, and that is all i'm using it for. one more trip to pt tomorrow and then back to my pain doc. the TENS unit has really helped, everything but my neck is doing better and i might just go ahead and get my mri of my neck and mid back just to see how things are in there. one thing that has been suggested is going in a taking the tips off the ribs that are pinching some nerves, some thing to think about i guess. thank you all for letting me rant and rave, things have just kind of sucked lately. blackwolf

my doc has informed me that he no longer wishes to treat my bouts of nausea with compazine. when i asked why, he said i was just making an excuse to get the compazine. i only ask for 10 pils every 4 to 12 weeks, does that sound like i'm addicted to it i just get so pissed off. i have tried about 15 pills(and supositories) with either no help or nasty side-effects(as in more nausea and vomiting to rashes and hallucinations(sp?), not to mention the dizziness and balance trouble) am i cursed with going to the er and being "the human picushion" as the poke and blow out my viens? and then only to hear the nurses and docs talk about the "nut behind the curtain". even witht he ringing in my ears i have excellent hearing and have even said in a loud voice that i can hear them. black-in the deep dark hole taking 1 step forward and 10 steps back-wolf sorry i just get so #*^*! angry at them, i only hope that the new doc i see the 1st of June can and will help.

i'm so happy when anyone makes it up and out, keep on a rockn' and getr' done. as hard as i am having it right now, you cheered me up some, and i needed it. blessings, blackwolf

all my best wishes and prayers everyday blackwolf

i had really good luck on paxil, but had to quit for other reasons. be careful as tricyclic antidepressants, are a no-no for most patients with POTS/NCS. wellbutrin has it's pros and cons, the word i have heard is either love it or hate it. best of luck, blackwolf

the hallmark channel runs it twice a day for two hours. sometimes i watch both times, just to get a good laugh. blackwolf

i take it at nite, so i don't have the tachy and palps as i try to sleep. best of luck, blackwolf

per losing track of things, i lose bits and pieces of time everywhere.. anyone find it, please let me know. blackwolf