Miriam Poorman-Knox

]Monica, As for the salt sea salt is usually better, can get at the grocery store. Eat id mornin, noon and night. Salt tablets and salt together helped me alot. You need to order the salt tablertts at the pharmacy as they don't usually stock them. As for long flights--A couple days before the flight dtart increasing water and sodium. Get everything perpared so there is no last minute rushing. Get as much sleep as possible before flight. Take litres of water with you. I drink 5-6 litres in 5 hr flight. Take foof, even if they feed you take a selection of food you like to and can eat. Walk when you can, and do the leg and foot exercises and stretching in your, there is a page in the magazine. This is a real head scratcher for many. Even those with medication sensitivities there are sooooo many things to be tried. As for BCP there are many articles stating that stoping monthly menses helps in the loss of blood which helps those with heavy bleeding. Adoption Yeahhooooo good for you. I had 2 children with this disease and really learned to be on their schedules. Rest when they do. Always have something to drink(non-alchoholic)!!!! And enjoy. I now have 2 beautiful grandsons!!!!! For me this life altering experience has made me realize andlive my life that "THIS IS MY LIFE" "THIS IS MY NEW LIFE" I need to adjust for what that entails and each day is different. The good news is that I am not waking up in strange ER's anymore from passing out. LBP Blessings Miriam

I would just go to the ER at MCO that way someone will see her. Thats pretty much the same thing at Mayo. Miriam

thechick, I take it your husband has no weaknesses, illnesses, or tiredness or anythins we deal with!!!!!!!!!!!!!!!!!!!!!!!! He is insensitive to your needs, but aren't all of our supporters at some time? There is a book Sacred Contracts, if you can read this it really helps put life and its potholes in perspective. If you can't get it I'll mail it to you. Remember this is the beginning again. Last year I spent 3 weeks on life support/ventilator. Lost 50 lbs. etc.... Felt totally useless, yet as days and weeks came and went and I started to feel better, medicines came and went and I got worse then better. I think of it as the circle of my new life.!!!!!! Blessings Miriam

A woman I spoke to from this site says she uses rubber gloves (like exam) to put hers on and it is much easier. I will e-mail the QVC to you. They really are good. Miriam

The irony is that I was diagnosed by a nephrologist, who gave me the script for the home IS's. Just know how your body feels and what it needs, the only was these can hurt is if you stop and your kidneys shut down. I had that happen 4x in 6 mos. last year. As long as you do the 24 hr. urine. And your sodiun is (DR.LOW 177) you are o..k. At least you know. I only knew when I woke up in a strange E.R.!!!!!!! Miriam

tHEIR IS A SITE ABOUT THIS. i WOULD CAUTION HOWEVER, THAT MOST DOCTORS DONT THINK THE THE KNEE SOCK TYPE WORK WELL. tHATS WHAT I USED IN THE BEGINNING AND THERE IS NO COMPARISON TO THIGH HIGH AND WAIST HIGH. Check the web site and check their return policy. Most won't accept returns if plastivc package is opened. I got mine at the mayo medical supply store. To be honest the best ones are fromQVC they have different ones that are much better than the custom ones for me at leasr, and cheap enough to have a few pairs. You can check on the net at QVC.com Good luck Miriam

Jenn, I take Zoloft. About the IV, I had someone a nurse come and give me the Iv at home, so I didn't need a fuse a port. This really helped until I was on meds that worked. All you need is a script from your doc. I would get 4 bags at a time., weekly it seemed for months. This might be a good alternative till you see the doc, plus the nurse will document whats happening. I live in pittsburgh suburb and havn't had problems. I also had this set up for my mother who lives in the middle of nowhere and the nurses were able to come start the IV see another patient and add another bag or stop it. Miriam

Usually when this happens to me and my "people" tell me!!!!! It is because I am falling into a pots hole. I need to take exra salt and H2O, AND have a snack. It almost is like a hypoglycemic attack of speech!!!!!!!!! Miriam

My frienf sounds like the Autonomic Storm is thunderin!!!!!!!!!!!!!!!!!!!!!1 What I do is get pieces of bubble wrap and pop and pop and pop It actually relaxws me !!! Pittiful but simple. Peace Miriam

Actually the inderal I was hospitalized when thewy started me on it. It too a week or so to adjust, The reason they believe this works is that it actually goes through your brain. My nephrologist, who diagnosed me tried midrodine first, but no luck. Ask your friendly family pharmacist for info if you are concerned. I too do not tolerate many medications well, but try, try and try again!!!!!Miriam

ON the bweach can I come Too?????Miriam

True , however inderal can help as it permeates the brain. Remember this is the beginning, Fuids, salt and compression hose. It helped me during the time I was always in the hospital getting IV's, to think of it as a puzzle, and arent we quite the puzzle, where square pegs can fit into round holes. I wish we could get together ar a Potspa!!!! Miriam

THE FIRST PART OF MY REPLY GOT LOST!! YOU ASK IF THERE WAS HOPE? ABSOLUTELY< AS WE ADJUST OUR MEDS AND TRY NEW THINGS< THING WILL CHANGE> REMEMBER that there are many meds for cardiac problems< but there are medicationd for other diagnosises that are lifesavers for some of us with pots REMEMBER "WENEVER CLOSE SOMEONE IS ALWAYS HERE" SO IF YOU NEED TO TALK OR VENT WE ARE OPEN THERE ARE ALSO LINKS THAT MICHELE HAS COMBINED ON A SITE THAT YOU CAN READ ABOUT MANY OF THE THINGS THATYOU WILL HAVE QUESTIONS ABOUT MIRIAM

ps CANT THEY GIVE YOU SOMETHING FOR DIAHREAH? TAKE CARE MIRIAM

My 2cents. I would call Mayo and leave a message for Dr. Low or whom ever you saw. Remember it takes 3x and faxing your questions---they will call. I would also fax the results of your 30 day monitor, and their EP doc can review it. I know how important it is to picture what is expected and how its supposed to work. Don't shrink back just because you have already been to mayo. That being said I would do the exercise bike even 3 minutes a day maybr 2xday, then add extra minutes per day. Make sure you can talk and arent forcing too much in that time. Go slowly and add more when ready. Miriam ALSO VERY IMPORTANT: lie down on floor and stretch when done, this is when your BP is most likely to drop. So you can do floor exercises and stretch.!!!!

Jenn, You are not alone. The things that helped me are using sea salt,and having IV's at home when I am getting bad. Also when they changed my meds to florinef that was for me almost magical, I still have problems but am not at the er everyweek. Blessings for rest. Miriam

Sounds like the proverbial autonomic storm!!! I agree xanax or something like works for many. Bendadyl works well for those who have mast cell involvement. I said before that I felt bi-polar because I would have the storm for days and not be able to rest. Try what you think will work, and remember that it may not work always. Peace Miriam

for me sometimes I've felt like I was bi-polar. There seemed to be no other explanation,except POTS Miriam

Kare, I take either 20mgSRfor a full day or 10 mg 1-2xday. You really need to play with it to see what works best. My degree is in Exercise physiology,health and dance. I was the fitness director at the largest club in Wi for 9 years. Then I no longer was me. And then went to seminary. Body,Mind and Spirit always!!!! Miriam

i think the make up of ritalin is a bit different> what i do is instad od taking EXTENDED RELEASE I TAKE !) MG TAB WHICH IS GOOD GOR ABOUT & HRS> so I WOULD TRY TAKING THATSO IT WOULDN"T INTERFERE WITH SLEEP IT TAKES SOME ADJUSTING TO GET THE TIMING RIGHT<BUT IT WORKS> ALSO IT TOOK ME @) YEARS TO FINISH MY BACHELORS DEGREE THAT WAS WITH @ KIDS HUSBANDS CAREER POTS IT CAN BE DONE> MIRIAM

QUESTION: WHAT IS THE KARNOFSKY SCALE? I AM GALD YOU ARE FEELING BETTER> the drug of which you speak i think is a new cognition drug< and that it works well> take care

JUST ANOTHER "NORMAL REACTION" FOR US DYSAUTONOMIACS!!!! IT IS SO AMAZING HOW COMFORTING IT IS FOR US TOO JUST KNOW THAT THIS IS WHAT IT IS!!!!! THE VAGUS NERVE I ONCE KNEW ALOT ABOUT< NOW IN MY FOG AS WITH ALL THINGS I GET IT THANX MIRIAM

I too am not able to stand for very long 15-20 min max is all I can do. I really have changed from a mid morning person to evening late night person. That is part of the sleep disorders tht occur from this. Sadly my "SHOP TILL YOU DROP" days are short. My husbans is even sad that my "sport" has changed. I also think this changes over time for us. LATER MIRIAM

I saw Dr. Low, my doc sent my records to him in advance and he accepted me. I was offerred an appointment in 3-4 weeks. I had to reschedule 3x because of insurance and each time I was offerred an appointment within the month. He does go over your medications with you and explain. He is very I want to say conservative in his demeanor and I didn't ask questions as I normally would have. That not like me......I was a little overwhelmed. They found things that had been problems for years and changed some meds and I have felt so much better. I couldn't get into see Dr. Grubb for 8 months at the t\ime Now we know why. Brainstorm----If you can get the mayo done and have the results of tests, then see Dr. Grubb,even if you have to pay it would only be for a Dr. appt.????!!!!!!! Bottom line is to get the care you need and is available as soon as possible. Blessings, Miriam

YES, YES,YES, I had the same problem, as I am very intolerant to heat. If I could I would keep the a/c at 60. Our home also has 2 furnaces and a/c units. I was having problems in the downstairs had rashes, migranes,snot, runny eyes.... I mentioned it to my Orkin Man(LOL) and he said when was the last time your filters replaced? I didn't even have a clue we had owned the house 3 years. So had heating and cooling people come tell me how disgusting they were. Then had them change the filters and hired a couple students to dust and vacuum before I returned. The recommendation to me if ib dusty type areas to change 2x year. My husband cleaned ours in between so that we needed only replace 1x year. Good luck and I am jealous you are in the heat. Miriam P.S. we also have an air cleaner in the living area as well as bedroom