Miriam Poorman-Knox

Hi-I"m Miriam and this is something I do Know about!!!YEA!!! First do leg exercised in bed, Leg lifts crunches etc. Then add some cxardio and weightd. Cross training is the key to potts. MAKE SURE that after you finish you go to the floor and stretch for about 10 minutes, as this is the time your BP will drop. 30 minutes is all you need. Make sure the cool down-even id you don't feek you've done much is done. This will help in muscle tone. Peace Miriam

Are you receiving I.V.'s at home? I started that in the summer and it has made a world of difference. Home Health delivers and can start them if needed. I see Dr. Low next week. What do you get the epo shot for? Thats new for me. Give me a week and I can come up with someone in your area who knows about POTS.

Peace Miriam

One or two sips and I'm feeling no pain.  Half a glass and I'm too loopy and may/usually get chest pains...not worth going there!

Heck, I get fuzzy form tylenol and too much water!

What is ARDS?  And  welcome Miriam Poorman-Knox!

tearose

<{POST_SNAPBACK}>

ARDS is Acute Respiratory Distress Syndrome- not related to POTS. I was in ICU on life support for 3 weeks. Didn't even know I was sick. It takes a year to recover

My dear first you must give this pompous doctor the information regarding pots from the dysautonomia foundation, I di have a symposium of the last comference.Your goal is to educatr educate educate!!!!!Are you from Wi? If so I know of a fine pcp Miriam

HI everyone,

I am still sitting here in my hole but a little higher and need some advice.  As I have told you my dad has been ill and though he is doing better he is not better yet.  Both my parents are having a hard time dealing with his illness and the resulting being at home and change in their lives. My sister who has been great is also having problems of her own.  The thing is that they try and not call me but yesterday things got bad and I spent a lot of the time on the phone trying to calm people down and think of plans and it was just bad.  And I feel so awful.  My sister keeps saying that my parents should move up closer to me but what can I do? If my day falls I can't go over there. I can't get out of the house.  My husband is wonderful and does all he can but to add that burden????  What do you do when you are the one that everyone calls when things go wrong and you are having a hard time yourself.  It is hard to because what little extra energy I do have some days I would like to have for Jim and I know it upsets him sometimes that they drain me so.  But I can't not be there for them either.    And to be honest it frustrates me because I think hey 9 years of dealing with this!  And I don?t call them for crisis's. It just seems that I have no one to call on, they are all calling on me. Except you guys which I know! My friends do this too and I am so tired and having a very bad back slide right now.    My mother now has shingles, she has to take care of my dad, their doctors are ridiculous (another loooooong story),my sister is trying to sell her house take care of her 3 year old and her ?husband?.  Any advice?  I guess I just needed to vent a bit but do you understand and can you help me deal with this all without making myself worse and still helping. Reading through this is it is a bit of a jumble but hope you get what I am trying to say.

Sorry for the cry of help again the hole I am in is deep but you guys and Jim are my light.

Stacey :-)

<{POST_SNAPBACK}>

Hi, I'm Miriam

Boundaries are very important and it sounds as though you are pretty good at that. Perhaps its time for your parents to move into a retirement community where they have there own apt and someone to clean, meals etc...That way you can see them when you are well, and know they are cared for otherwise. I just went through this situation myself. Its hard yet there aren't many other choices keeping sacred your husdband and his needs and concern for you.email me anytime

hey everyone hope you are all ok.i wanted to ask two questions.

1. does diet affect pots.

2. does anyone find that they cant sit in an upright postition.i find that if a chair has a straight back i tend to faint more and im so uncomfortable.and also my heart rate goes all over the place. im ok sitting a chair with no back or leaning forwards.i just wondered if any of you experienced this.

hayley x

<{POST_SNAPBACK}>

My doc. told me, and it works to keep to no more than 100gms of carbs a day. Some people have problems with dairy. To make up, she recommends increasing protein.

Your next question makes sense. Alot of pots people's BP is higher sitting straight up than lying or reclining. This week actually my neurologist said that the BP mumbers we are concerned with are lyinf and standing.

have any of you had symptoms of thyroid problems but had normal TSH only to find out you really did have a thyroid problem? i have alot of symptoms of hyper, but normal TSH and wondering if its worth pursuing, i used to be cold all the time, now i'm so hot! and i'm even skinnier! thanks for any input

radha

<{POST_SNAPBACK}>

This is one of yhe main factors in pots!!!! Make sure this is checked out thouroughly. My first sigh of pots was 25 years afo, after I had my son,,,I had hashimotos ans sub acute throiditis,and most people need a higher dose to feel better--talk to a endocrinologist who understands pots

PLEASE<PLEASE don't allow yourself to think that you have this"in your head" you had a positive ttt !!!!!!! As with all SYNDROMES they vary from time to time.

Keep up with your doc, keep a journal. And realize that this is a syndrome awhole bunch of different things combined. Sometimes one factor will bw more prominent,or two and it changes just when you think you 've figured it out!!!

First never leave hpme without water!!!! When you feel like your goin to kiss the floor, rise on rour toes contract your calfs,quads abdomen and stretch your upper bodu---no hands over head and take deep breath. We often can panic in situations where there are alot of people, also take off extra clothing as soon as you enter the mall, so you won't overheat!!

My doctor told me that if I take a sodium tablet and a meteroporal before going out, and drink some water too, I'll be OK. I have done this a few times and been fine. That is until I got ARDS. Now I really have no desire,

Miriam15221@yahoo.com