Miriam Poorman-Knox

First we all have an Autonomic Dysfunction.........now.

Basically if your are falling down or passing out that is POTS.

That is why we can stil drive, the problems aren't when sittin. (over simplifying)

Orthostatic intolerance is when your body "is on the move" or at rest and your insides keep movin. Think about an amusent park ride. I still want to puke when I remember going on the tilt a whirl in 1986 with my daughter. I'm moooovinggg................

Other than that I think that the "sides" that accompany this disorder that make it hard to know.

I remember having the absolute fear when this started. I would wake up in different Emergency rooms being asked do you know where you are? Nope

After I know fluid, fluid,salt salt, compression garments, I'm hot...-20 I slept with window open!!!

Answers will come pick the pieces that are most troubeling and your puzzle pieces will come together Hope this helps M

There are just soooo many questionable things here. First, I was teaching 3 aerobic classes a day, doing stairmaster 45 min 5days/wk. Training members to properly use weights free and machines. I was in shape, then my crash started. I still was teaching and working. Sleeping every chance possible. Then came the exercise intolerance. Boo.

Once diagnosed, still in hospital. Doc said that muscle tone very important. Right there in the be I started leg lifts and other exercise in bed, then added 2xd in bed or floor. (on purpose).

Second, this theory doesn't take into consideration the other co-morbidities. Some of the diagnosises we have indeed limit our fitness abilities.

Sorry, didn't mean to rant. M

Tea thanks for the Poem. Sorry or not to say any caffeine is dehydrating. However I know that I do make up in water what I lose from coffee.

I think in this syndrome its COFFEE==LOVE it or Hate it...............as for me need it! M

Broken shell just made me think. Michele do you have hashimotos or thyroid problems? thats pretty common and causes the same problems. Miriam

Yes I do tAKe ritalin 20 mg SR. and metoperol and florinef, inderal LA. The thing is that this is not predictable. And they take time sometimes years to finally get on board with the right combo. (I would like a #2 w/ friesLOL). M

When I was in the hospital when I got diagnosed my doctor told me that keeping muscle conditioning is imperative. Now take into consideration we are alot of exercise intolerant folk. I started doing leg lifts in bed. Did the full regimine and crunches and anything else I could think of. I continued to do that 2x day for almost 2 years. It works. Adding weight bearing exercise like walking is great. Remeber when walking that carrying anything with you will increase your hr more. You/We can do anything on the floor/bed that can be done standing. M

Are you seeing a neurologist????? Please let me know. Miriam

Hi,

A blood pressure reading of 140/88 isn't spiking its normal. Thats good. I don't know about your meds etc. but a pulse of 55 is a normal resting heart rate in someone who doesn't have our special gift. That might make you feel wierd, thinking it needs to be higher to hold you. Just a thought, before first coffee is finished. M

Here is how I see it. We have compromised autonomic systems. There fore heating and cooling doesn't work right. The increase in activity for us is enough to either make breathe more heavily, get red in face, increase hr. And for those with mastocytosis thats just it saying "hey ya'all" it is part of who we are. I think that when we try to pinpoint reasons for some of the symptoms that are part of one or more of our dysorders is possibly increasing anxiety. It did for me. So here is my 2 cents worth. M

Yes Julie I do indeed have Mastocytosis.

I feel like we collectively should send him a Thank you note !!!!!! This is big. Yeah You....

As far as mastcytosis its annoying but for me treatable. Did I say annoying.....

Thanks for sharing your "most excellent" news.!!! M

Welcome......I love cupcakes!!!!

How do you do or think the altitude affects you????

Miriam

EM,

I certainly would at least see what thy have to offer. This sounds similar to "metabolic syndrome".

Rene,

If you can make it to Pittsburgh we have many skilled physicians who know how to treat this.!!!!!!!! Its true. I can let you know who if you can come. Miriam

I would take someone anyone with you. Then let him know they are your advocate. You could ask for a chaplain if its at a hospital. Or have a written printed list of questions to fill in. Good Luck........We are WOmen Hear US ROAR Miriam

Exercise intolerence is extremely common among us folk. And yes arms over head=increased hr. So its best to modift and not have them as high for as long.M

Your HR does increase when your arms are over your head. Thats why its used so much in different aerobic,water aerobic classes. Mine was going over 200 and I would have grey outs . Thats all I wanted to add. M

I tried alot and promethazine works for me. My pcp said that it useful in pots patients. M

Firewatcher,

Yes your pretty, pretty colors can come from BP, it also could come from using your muscles in the prone position for pilates. That is not a real problem. I know u are breathing- I have always told my students to make sure that when you breathe you can feel your diaphram. Sometimes when our body temp is higher than we think we will have red,purple cheeks. What is your pulse when this happens? Thats an important. As far as the stairs. I would go with and stand behind and sllooooowwwwlyy go up 3-4 building as we go. Also Try keeping ice water to drink while exercising.

After I was in the hospital many of the times I used the stairs needed to go up in my house, it took awhile but helped. M

P.S. because our AUTONOMIC nervous systems aren't working "normally" it is difficult to use science as it is. Following your body's signals is the most important.

I agree with everyone. I would not change anything without your doctors knowledge. Eventhough the doses on some of these medications seems low. It is important for some to slowly lower the dose and some docs will start the new drug while stopping the first one. This is I think the best situation "if possible". M

This is one of the hardest. We all do this.!!! Keep your support system growing. Try sitting upp in a chair,even if you just stare. And I would find someone to talk to. Having your support system fall apart, you need this. Keep in touch here. There is almost always someone here. Like motel 6 we'll keep the light on. M

I know for me the 24 hr. urine catch was a key in adjusting this medicine. I was inpatient when I started mine. M

Hi I erred in response to the florinef dose. I was at the beginning on 1 mg and have worked my way down to the .... Sorry. M

Julie,

I plead brain fart. I was on 1mg and now am on ..3

The dosing has to do I was told with how your body metabolizes drugs. I have been likened to a horse!!! Sorry M

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