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

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

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

for what its worth, it wasn't until I was on florinef that and midrodine that I really could see a positive difference. And it took them a couple of months to add florinef. So keep them informed, Miriam

The goblind ate my very insightful thoughts, so I shall try again. Make sure that the drinks you have contain no sugar-even gatorade. Keep your cooling vest etc on shen you can. Get many bottles of salt tabs, and always keep one with you in your pocket, car, at the houe,home etc. Always stay hydrated. As for telling the squad, they might feel that you can't back them up- and you might not. There are studies at the NIH check their website, there are some in april for a week. Its free. I agree with ?Merril the medicine you take is usually taken with the sodium and not taken at night, unle