Miriam Poorman-Knox

When you stand up your blood wants to go to your feet. Gravity....and you body clamps the blood vessels down and pushes the blood back to your head. That's why it drops. With any dysautonomia.

You can get it from the hospital pharmacy however. Let me know.

My doctor who diagnosed me a neurologist in Pittsburgh, told me about a year ago that there was an article in a journal that said many pots patients also have a seizure trigger. It somehow is from one of the many pieces of our syndromes. I had an EEG, and another different study. I forget the article. I did post at the time. Dr Busis lifts the hood checks the engine, oil, checks the manuals, then puts his feet up on a table looks at everything and then talks with you. Miriam

I did go to Mayo , and had this testing. Personally I think it is. I live on an island and must fly to another island to see anyone. Take advantage of this, If you can get in. I think it will bring you some peace.

Dry eye syndrome is also to be considered. Because we have a syndrome. Most of us more than 2.!!' Please see an opthamologist.! They will take pictures of your eyes.

I have not been around for awhile. I got 2 new member notices this morning, from the Pittsburgh area. I now live in Hilo Hi. We moved here in Sept. my husband had a change in job location. It is quite different. Never thought I would live on the hot side. Mostly it's o.k. We have trade winds a lot. Anyone else in the state aloha. Miriam

My doctor said that if you are gonna have it, most people have an onset with pregnancy. Including miscarriages. The good part is that you know earlier and learn more .

I II have done alot of traveling before during and after diagnosis. I think for this salt tabs nd to let the flight crew know she will need to drink one of the large bottles of water on each segment. Its good for her to tell them they are mostly good about it. Have snacks, real food and let the flight crew know she needs to move around. So she may need to stand and stretch in the back while they are providing service. Let me know how she does. My son is in the military, special surprises are nice. Miriam

Nina can you help me I have the long re-ser password to get in, I cannot find where to change t once in. Thanks Miriam

It is so tough to say. The vaginal dryness could be an estrogen issue. Also SICCA which is a bit different than Sjogrens is a possiblility. There are sprays for mouth, nose, use eye drops, lip. Drug store .com has an incredible selection. It might be, just for grins worth seeing what they have. I wouldn't stop sodium. Would add more H2O. And find a good moistureizer Eucerin is great and not expensive. Suckking on sugar free candy or loli pops, Helps me. Miriam

Those morons should have premeditated you with antihyst and steroids fit 36 hrs. NEVER let them do this again. I have had this happen and I don't always get the best test, but collectively we have a healthy respect for this. Miriam

Welcome. The thing about going to may is they are there for your PCP to call. Mine has. Also I have mastocytisis and a bit of sjogrens which is common. My rip keep everything hydrated eyes, mouth moisturize skin. As an exercise tip keep cardiovascular. For now cut free weights and do the machines. At this point you need to just keep toned and card active. When you aren't as unsteady increase a bit. Be mindful of your level of exercise. M

Welcome. The thing about going to may is they are there for your PCP to call. Mine has. Also I have mastocytisis and a bit of sjogrens which is common. My rip keep everything hydrated eyes, mouth moisturize skin. As an exercise tip keep cardiovascular. For now cut free weights and do the machines. At this point you need to just keep toned and card active. When you aren't as unsteady increase a bit. Be mindful of your level of exercise. M

I think of it this way we should be eating 6x a day: grazing I liken it to. That should help hypoglycemia. As for GI most of us have some sort of intestinal issues. So that's part of the. Syndrome. We have. Not all doctors and diagnosis's are all there same say same appointment time. Now eat something. I still have cookie dough I mixed for Christmas I might bake a few cookies later. Take care M