Miriam Poorman-Knox

Welcome, Everyone is different. I started Florinef .1mg and for awhile was at 2. Its dangerous to say that this is unheard of unless you understand the persons physiology. Years later its still at 1. M

Remember we have "orthostatic intolerance". So the fact that you are able to do more is great. Worry when you cannot function while out. Your heart rate is gonna get high-my thought- instead of counting all the time find a place where you "feel" o.k. And where you are feeling like its not. Congratulations. I admire you. You stepped up to the plate and for now: you are "upstanding"!!!! M

Hi, Second cup of coffee kicking in sooo. Many folks with dysautonomia have "metabolic syndrome" (brain fart) google it.!!I will remember though. So while getting hydrated and a proper sodium load, your blood sugar etc. can be having their own party. This is my own "Gospel according to Miriam" We ALL experience anxiety with this or any other chronic disease. Your doctor saying you were to sensitive to your heart rate? should be dope slapped. Your body is most likely sending message to you (danger-drink h2o,salt). There have been many posts about therapists/therapists here. Many feel that they will be labeled as not mentally full???. If you can have someone to talk to who will be your "vent" do it. I think it is the best gift you can give yourself. My sermon is over.........M

I didn't mean to imply that I thought your symptoms weren't from dysautonomia. Since pots is related to standing, and you related issues while friving, I meant that dysautonomia, Postural orthostatic tachycardia, orthostatic intolerance_--=similar symptoms I will answer your other questions after a nap.M.

Dr. Low at Mayo refers to these as "AUTONOMIC STORMS" . Knowing when they start helps,then have a plan. I don't remember do you still drive? Pots folks don't have issues with driving because we have problems upon standing. Big--Big-- Please remember in your desperation that not ALL of your symptoms are not likely from orthostatic intolerance. My pcp, keeps reminding me that she fears that I assume it is all pots and frankly for me its not. Welcome.....we are a bunch of folks who become "family". Some are on site often some not. Sometimes we just read whats happening. The site has been of great value to me. M

I agree Call the cardiologist. This is someone who understands orthostatic intolerance right?M

Welcome, When I was living w/o diagnosis and a full time mom,student and part time job I made my evenings my most productive time. I took evening classes, then would pay bills when I got home. That changed. Yet if there is one piece of advice its to go with the flow. I would take 20 min naps. (A skill-I no longer can). Also I think havn't put this out before. Bowel movements can be unseteling for us. Its changing the fluid balance . No more details needed. Miriam

Ernie has returned from the mountain. M

Hi, Since one of the things your mom wants to do is go to church, perhaps they have Stevens Ministers. They can do errands bring meals... anything that you need help with. It is indeed possible to get SSI, if you have the disability. I am no specialist, by the list you have you could be able to receive on different diagnosises. Find a lawyer that cares. If the approach is I'm not sure--then you will be that is not the one for you. You may also try Legal Aid. They help for free(within income limits). M

Ask your doctor for a medicine that works for altitude sickness. Will check the name, as I need some also. You take it for the # of days there. Went to Santa Fe a couple years ago after spending 4 months on Hawaii, caring for grandchildren. Spent 3 days prone on bed. My Husband was at a wilderness medicine conference and after the second day said you probably have altitude sickness.!!!!!!!!!!!!! Got the meds and had a couple nice days. M

Hi, Ernie is at "The Mountain". She said that she is getting alot of information. She is still trying to get all the purple off her, test was 3-4 days ago. She is a trooper and does what she needs to do. She will be there one more week. I cn't wait till she is able to tell all of you about her adventure!!!!!!! M This post has been approved by Ernie...............

I would rather "pay it forward". M

Suzy, I actually have a couple of those bracelets and some cards. If you PM me your address I will mail them to you. M

First, I'm out standing in line and I get hot, dizzy etc...I think I need cold water!!!!!!!!!!!!! Mast cell activation is annoying yet from my knowledge you probably had a coat on and were holding things. Think immediate what right now is ................. As for your friends its true things change. Ihave said that at this time today this is what I can do. I can try another time. Yet now This is what is. Good thoughts.....M

When you do squats do them with your back against the wall. This will allow balance and support and can do gradual movement. You could also use a chair on the side. Look ahead and count down 2 up 1 2 3 4 . Breathe. If you can do one to begin with fabulous then add another and another. Good luck M Also make sure your abdominals are tight( YOU ARE STILL BREATHING) while you do this.

While I was having mine-- just at the end my Neurologist just hapenned to walk by and looked at it, she asked the tech--what was she doing? and she just pointed at me and said nothing. So the good part is no diagnosis of seizures. Yet brain farts still abound. M

Last year my neurologist did a talk and said hat there was a study published in neurological journal(don't know which one) that showed that folks with orthostatic dys. had abnormal EEg's and that i was seizure like. He told me that one would feel like something was wrong (I call it a brain fart) and get confused. Then it seemingly moves on. He said that when I had those symptoms again to go right in --immediately and get an EEG. Then the diagnosis could be made. Hope this helps Also remember that not everything is part of pots, etc. Just read over a note from my pcp,KNOWS POTS, and she sid "I'm concerned that Miriam attributes her symptoms to pots" which concerns me. M

I feel so bad. I got travel covered but could not get the treatment. Most US people who go to Dr. Low have their records sent in advance and then he reviews them and decides if you are a candidate( no better term right now). This is not the case for Ernie, and that makes it more difficult. I feel really bad.Sad. Miriam

I can say that for me my pregnancys were hard. One of the "hallmarks" of pots in pregnancy is papular dermatitis of pregnancy. A rash mostly on stomach that itches like all get out. I did have some very early miscarriages. Once I got further on and had a great doctoe, and took the right meds. I have 2 wonderful children 30 &27. We have come alon way since the 70's. As long as your doctor is aware relax and enjoy. Once medicated I loved being pregnant. So, congratulations and enjoy. Miriam

Another thing to consider is low estrogen. I had this issue and saw a uro/gynecologist. Miriam

Ernie You are such a strong soul. I have experience in both areas, and if they are threatening you, have your identity hidden. Also all hospitals must respect patients needs. ? Any religious or cultural reasons..... PM me if you need any. Don't let them intimidate you. Keep a diary as much as you can. Bless ya Miriam

I think that since water is so fuldilling. Ask for the ankle "wraps to help keep your legs up. And perhaps a board to put under you and help keep your head up. When the therapists push or help you this is the absolute best. Your body will learn to respond. Walking in the water back and forth (holding for balance) turn and go side to sise and this will strengthen your leg ,butt, and abd. muscles. Sit before you get out or immediately after. Great job. Miriam

When I first started to get sick was 149 and 23% body fat. Taught 2 aerobics classes 5x wk and did stairmaster4xwk for 45 min and demonstrated proper use of machines and was a personal trainer. Then the weight started adding on and as the meds increased, so did the weight. I became exercise intolerant. My highest weight was 250.....I had barriatric surgery due to liver (NASH) and because of my athletic build I was still in the high 20-31 % body fat. Now 184. 26% BF. size 12 . Still take the offending drugs. Can walk some short hart distances. It's hard but it works. Miriam I also got info from the military about dysautonomia. There was and still is belief that soldiers for whatever reason were among the first to be tracked. There also fine shape get sick lose exercise tolerance... Not saying that this is the only group. My grandsons were quiet only long enough for me to read a couple studies. Peace...Miriam

Endure, Please be very careful with these patches When they are cut or altered you don't get a measurable amount. It is possible to OD on Fentynyl patches. I know they are right now your lifeline but . God Speed...... Miriam

Just consulted w/DH-dDOC. His thougths are that it should be checked by the nurses who specialize in them or the doctor. Miriam