blackwolf

Ativan, though helpful, is NOT one of the better drugs your son could be on. This is from my own experence and some disscusions awhile back. I would reconmend Xanax or Klonipin as they are much easier on the body to work with and get ride of when necassary. blackwolf

I agree with Ernie and having had this happen a few times myself and having had the same tests, I think that they are a form of "autonomic storm". Other than that I guess I have no advise, I also got some relief from Paxil, but I know longer take it and I have noticed these "spells" again, thou not as often or as bad. blackwolf

Hey Morgan, have you tried a gentle massages to try to relieve it. You might have a stopped up area in your lymphs. I would suggest warming it for about 10-15 minutes and then doing some very lite but firm rubbing starting at the foot and work your way up. If the area is tender, warm or red I would suggest going to see your doc as you may have some kind of inflamation going on. good luck, blackwolf

Dear Christine, been doing that for years now. I have a few suggestions. potasium, vitamin b and magneisium lactate are all part of my daily routine along with the regular daily vitamins and minerals. fluids and good eating habits help also, try not to snack later in the day and drink fluids that help to balance your electolites, but be careful for drinks with to much sugar. I would also like to suggest some leg stretches that I find helpful. laydown with your feet elevated. curl your toes and straighten them slowly, open and closed 10 times, then flex and extend your feet 10 times, again slowly. then rotate your feet, in a circle, 10 times both ways. I am by nature a "foot tapper" my feet are always in motion. I try to get my feet up several times a day for at least 15 minutes. one more thing, do you use compression hose/stockings. That may also help. Good luck, Blackwolf

After being hit by a car, my sister had trouble of that nature and it took about 16 months to go away. I say if you don't want to hit anything, sit down. My hubby has done it since back surgery and now can't stand and go because the nerves won't relax and he can't start his stream. good luck. Blackwolf

i agree with everyone else. layers are so important. my other stuff includes a good heating blanket, hot pads, warm water bottle, heated slippers, gloves, scarves, socks (often over pressure stockings). hot, just reverse, lite, airy, prefferably cotton clothes, spray bottle with water or, when desprate, water with either witch hazel or vinegar(chef's salad anyone) to aid in evaporation, also drinks and even, for me positional changes may help. good luck, blackwolf

after 3 1/2 years; nite cert. nursing assistant in an understaffed nursing home. one nurse, one or two aides for 59 residents. no trouble before my symptoms, but after.... blackwolf

sorry it took so long to reply. geneva- yup, i'm ok, no head involved, just the glutious max and my knee. a few bumps and bruises, hot water and rubbing them out. i did the "boot scoot". i am well padded, no problem there. my trouble also is the dropping bp, proamatine isn't helping as i'm on a lower dose and hoping to get off of it as soon as our pharmacy gets the mestinon in and i give it a try, not looking forward to having it bomb as i have very few options after that. take care all, and nina, i love the bubble wrap idea. i purposly layed out my house so that i have very few sharp edges in any one area. the worst ones, ie coffee table and side tables are handled as such: coffee table is an oversized ottoman and the sidetables are taller and back slightly. good luck all, and no more "fall down go booms" allowed. balckwolf

Nina- It must be contagious. I got it to. Took a tumble on the last 3 steps of our stairs going downstairs. OUCH! concret is hard, thank goodness for the extra padding I carry. Just some sore spots and bruises. WHOOPPERS!! Blackwolf

I also bruise oddly. I often have bruises over spider viening, sometimes with pain in the area before bruising. I was told that I show no sign of blood clots and therefore should not worry. I bruise easily and frequently for little or no reason. Of course, once in a while I'll really wack something and never seem to bruise, go figure. I have also been told that I have abnormally small blood vessels and they are weaker than most. I'm a "tough stick" for both IV's and blood draws. I often have the IV lines used on kids and my blood work is usually done with a "butterfly" needle. Check your diet and vitamins for the stuff already suggested and make the changes needed. I do know that vitamins C, D, and minerals like iron and magniesium are all reconmended. blackwolf

Dear Mary, I'm SO sorry you have to go thru all of this junk. I avoid the ER like a plague, the docs there are so behind the times. How are you both doing now? I wish I could help you with the migrains ( or as my aunt said mipains). Years ago I used to take a drug called midrin. I don't know if it still on the market or not, but it was good to me. It did come with tylenol in it or with out. I did read in an article a while back about Topamax causing worse headaches for about 3-5% of those who took it. Hope you feel better soon. Blackwolf

You go GIRL!! Blackwolf

I'm not sure about the weblinks from MM( sorry, didn't read them all), so I'll just put in my 2 cents worth, ok 1/2 cent worth. 1. check with your local churches, see if they have a program to help, or know of one. 2. check with your local job service to see if they have a "physical evaluator" that specializes in giving you a complete ot and pt evaluation. This person usually must go to court with you and may, for a VERY small fee, represent you. 3. check with your state's Dept of social services and apply for any program you may or may not need, ie. food stamps, energy assistance(heating costs and electricity), phone service(local and collect calling), medical assistance. Do you have kids, mabey in school, apply for school lunch discounts. 4.There are also local groups that cover most household bills for a period of 3-5 months. Do you have a local Head Start Program(preschool/daycare) they also have programs for people. In rural areas, check with your local health nurse for assistance. You can also sometimes go thru the Dept of Agreculture, in those rural areas. If you are in a larger city and if you have housing and redevelopment gruop and you rent or can prove that you could lose your home and it would be to physically demanding to move, you can apply for emergancy assistance. Ok, that's all I have. And if you need to, please use the local food pantry. They are there for that perpose. We, my hubby, myself and our 2 kids used them for several months. I now make it one of our monthly jobs to deliver one or two sacks of food. And I would also say to get a lawer, just to be well covered. If in dought, check with the Dept of social services or look for a group that uses prorated fee/sliding fee/free services. blackwolf

Yes, my grandmother and one of my aunts, both one my mother's side. Interesting. blackwolf

Welcome, first things first. Second, check out the "what helps" section on the home page. It covers stuff like compressio hose, fluid intake, salt, eating several small meals, ... Tons of good ideas. Third, if the midodrine/proamatine isn't helping, there is research coming out of the Mayo Clinic in MN that has a new drug to try, pyridostigmine. Check out the Winter 2005 news letter for more info. I too am a mother of a 7 yr. old(girl) and an 11 yr. old son. They have grown up knowing me with POTS so I guess I would suggest checking Dynakids, the web site for kids, to see if they have suggestions on how to talk to your kids. If nothing else, just keep it simple and slow, a little info at a time and don't overwhelm. Again, welcome Blackwolf PS If you have some special questions, you can try to run a "search" and see if we have already talked about it. And don't worry about repeating stuff, we do it too.

I get the "birdy in the chest" about 2 dozen times a day. Try coughing to make it stop. Or pretend you need to have a BM and "push down" for a few seconds. I have this now as I have stopped the Norpace again. I was having it alot already, so a little more wasn't a problem for me. Feels nasty, but won't hurt you. Blackwolf

I have a few suggestions. Try baby foods, blended, strained, and see if that helps. I also avoid foods with sodium nitrites as a preservative, I get terrible tachy from it. I also avoid processed meats, hot dogs, sausage, etc. I'm now cutting out sugar, except natural stuff like in fruits. As to lying down right away, I did that thru most of my second pregnancy, works better with your head up on two or three pillows. Have you ever been "scoped" to see if your stomach empties properly, mine doesn't and I have to totally change how I eat, 6-8 meals a day now. Blackwolf

I'm so sorry for you and your family. All my prayers for you. Blackwolf

I have a question. Sorry if it is dumb. To tired, don't waste your time. I'm "windy". Years ago I had migraines alot and now only rarely. My trouble seems to be what I call "eye migrains", for a lack of a better term. I get nasty, horrible pain in my muscles around one or both of my eyes. It happen about every 6-8 weeks and lasts for about a week. It is really hard to do anything as just looking around is painful. I can't watch tv and right now even reading is tough. I rarely take anything for pain anymore than the neurontin, but with this I have to have something else. Though it makes me feel yucky(upset stomach, nausea), I have given in to ibuprophen as it seems to be the only thing that works. Asprin doesn't help and though helpful, the neurontin isn't strong enough. The worst pain is when I try to look down or to the right. Anyone have this trouble? I have on other symptoms of a migrain, sinus trouble, or any other kind of headache. Most of my other POTS trouble is a little worse but not to bad. I have tried more water, less water, eletcolytes, salt, mineral and vitamins, diet changes but no luck. I KNOW this isn't a hormone thing, those haven't changed in years. I have also tried hot and cold packs. Any suggestions would be much appreciated!!! blackwolf

i will drop her a note asap. blackwolf

i have trouble with certain kinds of dairy causing migrains, but i do fine with yogurt and Deans Easy Milk. but i can't tolerate most of the soy milk, small amounts are ok, but not the amount i normally use in a day. go figure i also have trouble with POTS if i have to much gluten food, not only do i get the stomach trouble but i notice that i hurt more all over and feel colder. blackwolf

i have alot more, but will post only on days that i'm not shaking as hard as i am tonite. blackwolf

hey tearose, i'm working on a really good almond flour cookie, still dinking with the recipe but getting close, will be gluten free and made with splenda. it is modeled after a chocolate chip pudding cookie recipe of my mother-in-laws(now passed on). so for not to bad, still doing weights, but not so much on the drive way-too cold right now, but did get to the store a few times. did do one big job, cleaned and got a large number of books in our "library" downstairs put where they belong, need more shelves, lots more. keep on moving all, blackwolf

Funny first: Non-medical dictionary: Artery- study of paintings Bacteria- back door to cafeteria Barium- what doctors due when treatment fails Bowel- letters like a, e, i, o and u Cat scan- searching for kitty Colic- a sheep dog Coma- a punctuation mark Diarrhea- journal of daily events Dilate- to live long Enema- not a friend G.I. series- soldiers' ball game Hangnail- coat hook Impotent- distinguished, well known Morbid- higher offer Nitrate- cheaper than the day rate Pelvis- cousin to Elvis Post operative- letter carrier Protien- favoring young people Rectum- dang neared killed 'em Rupture- extreme bliss Scar- rolled tobacco leaf Strep- narrow leather band Seizure- Roman emperor Symptoms- funny cartoon family on TV Tablet- small table Terminal illness- sickness at the airport Tumor- an extra pair Varicose- located nearby Religious: Two boys were walking home from Sunady school after hearing a strong preaching on the devil, one said to the other, "What do yu think about all this Satan stuff?" The other boy replied, "Well you know how Santa Claus turned out. It's probably just your Dad." Just going to church doesn't make you a Christian any more than standing in your garage makes you a car. Deep Thoughts: Always keep you words soft and sweet, just in case you have to eat them. Always read stuff that will make you look good if you die in the middle of it. Drive carefully, it's not only cars that can be recalled by their makers. Eat a live toad on the morning and nothing worse will happen to you for the rest of the day. If you can't be kind, at least have the decency to be vague. If you lend someone $20, and never see that person again, it was probably worth it. It may be that your sole purpose in life is to serve as a warning to others. Never buy a car you can't push. Never put both feet in your mouth at the same time, ecause then you don't have a leg to stand on. Nobody cares if you can't dance well, just get up and dance. The early worm gets eaten by the bird, so sleep late. When everything's coming your way, your in the wrong lane. Birthdays are good for you, the more you have, the longer you live. Ever notice that the people who are late are often much jollier than the people who have to wait for them? If ignorance is bliss, why aren't more people happy? Some mistakes are to much fun to only make once. Don't cry because it's over, smile because it happened. We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some have weird names and all are different colors but they all ahve to learn to live in the same box. A truelly happy person is one who can enjoy the scenery on a detour. These items were found in with the papers of my aunt who reciently passed away. they have brought me much enjoyment and I hope they do to you too. Have an awesome day and know that someone has thought about you today. blackwolf

tearose-thanks for asking, sorry about the slow reply, i'm a little more than one bubble off today. as in, i'm kind of out of it, mentally. i must have missed more threads than i thought earlier. my driveway is about 100 feet long and falls away from the house about a 15% angle. I am also using free weights, 5 lbs., my usuall weight for arms. i have several stretches from about a year ago in pt that i do daily, pain or not. my trouble is fiinding a land equivalent to water excersing. i just have to big a drop in bp to handle the laying down excersizes or anything to long. bp control is again an issue as the proamatine is causing more trouble than it is worth. i just got a "sit down on chair" tape (old lady style) that i will have to try. i am thinking about using my mom's "total body" gym thing as she doesn't like it very much and you can adjust the height. i am hoping to borrow it this coming week, i need the other van to get it, it (the van) needs antifreeze, budget issue. one good thing, my pain is almost to a good level, again, except my neck. neurontin has really done the trick, i'm at 300mgs 2-3 times a day. going gluten free (nearly there) has been nasty work, still looking for bread that tastes good and that i can afford. thanks, blackwolf