Miriam Poorman-Knox

Dr. Low calls these "Autonomic Storms". For me I take itch and scratchy medicine.? I really helps. M

I just got test results that are positive for vasvulitis. Had one negative one a couple months ago, also a positive one from Mayo. It makes sense but still is piling on. See Rheumatologist Tues. When I called and told the nurse it was + she called right back with an appointment the next day my doc is in. Early in morn. Oh well......

Morgan, It is so nice to "SEE YOUR LIGHT SHINE" Yeah Morgan/////Miriam

Hi, ]The best exercises are the floor ones. We can do most every muscle group on the floor. That prevents some of the problems. It is true that chest pains and squats can go hand in hand. I don't know how your doing them, the problen often is that the body is not "square" and there is more pressure on the upper body. Plus we tend to hold our breath during these. As Morgan said these are the hardest type for dysauto. folks. Congratulations on exercising though. good luck...Miriam

Hi, First I don't think it matters much where the stress originated. Its here treat it and live --hopefully a bit better. Second our veins and nerves at totally seperate. There are no nerves in our veins. Although they do run along the same pathways. It is entirely possible to have other diagnosis. with this. The point for me is to treat the symptoms and know that dysautonomias are ever evolving. M

Ami, Yes I too live with this challenge. My diagnosing Doc said that singing is something that would cause problems. I am clergy, not that I "CAN" sing well..... As for the inability to swallow. I think that the lack of fluid causes this. And the mouth, throat can get dry first. So I sip as I eat small bites. Might help till the tests are done. I have also contractions in my throat, very painful. But they go away. I am aware of them and respect them. Miriam

Yes I have been taking Ritalin for years now. I cannot function w/o it. It is really helpfut for the brain fog and the motivation. There are still few days when I am present but unaccounted for., few though. I take 20mg-sr. M

I'm curious, did you have ARDS or any lung problems as a result of your hospitalization? Faith can be a wonderful motivator That we will look for help, accept it and know when we need something elso. M

Michele, I have had a couple of these years ago. My husband told me the name cannot remember just now. When he gets home will ask. It is getting stuck in between stages of sleep. With all the other pauses that you have this might be something else. Yet this is a possibility. M

My doc who diagnosed me said that pregnancy and delivery is very important piece. It means that for YOU this probably was the stressor that made it "go". Since this is so personal the triggers are also. M

[/size]Sounds more like orthostatic intolerance. A different type of dysautonomia. With pots it is defined as standing.

Maggie, This sounds like my story. I was doing o.k.. while I worked at a health club. I was very active and was able to modify things that bothered me. I did have issues when there were extra stressors were added. I think and I may be wrong. that since your children are so young and require you to be there that this is your-homeostasis-,,,,, That doesn't mean that it works everyday or all the time. I gor kicked in the butt when sick, stressed. travelling to pa from wi 15 hr drive...I dont know if this helps. I went years later to waking up in ER's with them asking "Do you know where you are". I think that the activity is the key. I was told exercise would be the key. I think that this may be it. M

Sarah, I would suggest calling local churches to see if they have STEVENS Ministry" or any folks that volunteer.Miriam

Do you have dry eyes? Dry skin. I have this problem and its sjogrens (showgrens) Finally a diagnosis. My eyes have been dry for years, and my mouth gets so dry that people thought I was drunk.......... Miriam

Thanks, I was on o.1 per day for almost 4 years. They told me to just stop it. I questioned the nurse but think I will wean myself. Thsnks Miriam

I know some of us have stopped florinef. I had to do that this week. I am a bit concerned, as this was the 50 lb. weight gain drug. I am concerned that if I need it again I'll gain more weight. My BP is too high and I am retaining fluids. Thoughts? Thanks Miriam

You are sooo right. Another hallmark is hashimotos. I have eye plugs and restasis,,drops,,,hot compresses,,,goop,,,[ I just think that there has to be a connection...The sahara is not fun.... Miriam

Morgan, what a dope. I dpoke w/hubby and asked him to brainstorm with me over my outrage. He suggested making an appointment with this schmo and ask what it was that made him do this. Mark said it can be fby phone or in person. Not that this is true for every doc, he said that if he sits down and talks with a patient after discharge, its best that just the patient and momor dad go don't g?gang up? Perhaps this is all ridiculous, yet your son has a right ro ask for what is safe, healthy and effective. Miriam

Hello, Have really been here, but unable to successfully sign on until today. I am wondering if any one else has been diagnosed with sjoren's syndrome. ( Dry evey, mouth, everything is fry, glands that are to lubricate things dry up) I have had this for awhile and it wasn't until at my eye dr when I said my mouth is dry-he knew the eyes were_.. It seems to me that this is not that far off from what is already happenning to us. Any thoughts? Miriam

Gael hit it on the head. The only thing I might throw in the mix is the possibility if using a anti-nausea patch. This may help make it more bearable. Also just movement walking around the house is good to do many times a day. Perhaps she can do some upper body and leg exercises from her chair. Hard to visualize but helpful. Miriam

Pat s[ince this incident do you think there will be a way to get the SR tablets??? That is the one thing that holds me up. As far as being embarrassed, I tend to think of it one of 2 ways. 1. Look at how skilled and reactive your colleagues were 2. How much less would you have been embarassed if you let a fart rip? This too shall pass. Plus I bet it made that meeting a whole lot more exciting !!!!!!!!!!!!!!!!!! Best, Miriam

I understand how totally frustratin these are. I would suggest that perhaps along with this you might eat something maybe protein. Our bodies are wierd and with adrenalin flowing etc. Miriam

I I have this and I purchased polarized sunglasses. They are wrap around they go over your glasses they are great. There are many at cvs. On the net you can get them for both av. Also I am wearing them when its snowing also a hard reflector. Good luck Miriam

Dano, Have you been tested for sleep apnea?

Dizzy, I live in Pittsburgh and go to the University of Pittsburgh. I have an incredible group of doctors. Not all UPMC. Who are you seeing. Do you need a place to stay? I will be leaving May 31. But here until. I could be your tour guide and advocate. PM me your phone and we can talk. The neurologist I see, puts his geet up on the table and goes through all the information. Loves puzzles. My PCP Dr. Frank is the best vry hard to get in, there are others though who are excellent in the department. So when you are hospitalized really they know about pots, dysautonomia. Miriam