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

Tea I am so angry!!! I don't remember where you are, but this is surely an abuse of power. I have worked in hospitals as a chaplain. I have also had the experience to be misdiagnosed as psych. Blessings miriam

I just lost my post. Will try later.

ever heard of baby sitter, child care provider????? I had f

My spelling *****

For what it's worth, participating in this extreme exercise is just asking to have setbacks. I understand dys. Can go into remission , yet is not technically cured. Doing the recumbent bike and toning and stretching is the most appropriate. I think. I would however ask card how he wants you to check HR either PRE or counting pulse Inthink Pe. Good luck. Miriam

PCP can't spell

Hi,

I would want to know how much protein you are consistently taking in. Sage words from my OCP is that I attribute things to dys. And may lose the other issue. Good luck. Miriam

I must first say I am sorry. For years I would read posts from and speak with folks who were treated as mental health patients instead of a patient with a medical problem. I thought I got it. I had a rectal bleed on Oct 6, I took myself, my laptop, (I have internet access to my medical records) and went to a hospital across the street. My potasium was 2.1 my blood counts were close to "transfusion level" I had MRI and they scheduled End/Col They weren't keeping the IV hydration where it needed to be, and I told them. Showed them on my record. They called and spoke to my husband and he confirmed the level of fluids I need and the hospitalist that night "got it". After getting admitted to the floor at 11 pm. in ER from 4:30 a.m. They gave my IV morphine for pain and Temezapam for sleep. Then the nurse brought in go lightly. As per her notes she woke me and poured a little in my mouth and I fell back asleep. She then said I am going to give you this in NG., I think my reply was do what you gotta do. Knowing that I cannot have NG tubes because of bariatric surgery. My pouch only holds 7 oz. So in she comes puts the tube in and pours the go-lightly and then added 2 cans of carbonated soda into my 7 oz stomach. The next day DOD ( doctor of the day) a woman argued about the fluids and made a psych consult. She didn't examine me. Just bolted. My med list scares her.

I go for the proceedures in mid afternoon. I am the only one in or the anesthesiologist came out and I said remember --NO PROPOPHAL-- she said thats there protocal and I said that wasn't gonna happen. I had spoken to anesthesia the night before and we had a plan it was in my chart. doing , its ok., another doc came by and they talked around me and he 4x saif patting my shoulder "we'll just use propophal -- each time I responded NOT GONNA HAPPEN. So she said then I will give you general anesthesia. What could I do? I was alone, no one waiting, had a bleed and needed to figure it out. So they intubated me and did the procedures.Causes psychosis in me.

I was back in my room on the bedside commode, and in walks the psychiatrist. And she just sits down in the chair!!!!!!!! She talked to me for awhile and then said even though they had contact info for each and every doctor on my team. They called my husband. He gives accurate info but should't have to. Her notes said she didn't know how reliable I was. The theory I allowed them to do invasive stuff instead of bowel prep. general anesthesia. Also it was concerning that i disrobed in front of the nursing staff. Know that this is being discussed with this place. One that didn't know dysautonomia. when they are in the top for treatment

I have Mastocytosis and take enough antihystamines to put down a cow. But it works. I had problems with restless legs and the whole body "scratch/shake" My body goes into a panic. And each time that I take my itchy and scratchy medicine it helps. That is what I think should foremost. That Step 1. you know to take antihistomine. This I think helped to thwart worse autonomic storms !!! good luck Miriam

Have you been checked for metals, methane and carbon dioxide? Best Miriam

Way to go "Dr. Moe!" I had endo #2's appointment today (the one who said I did not have DI.) He was appalled that my doctors would drop me when everything was still "unknown." He said that as long as Vanderbilt will prescribe the meds, he'll monitor them...leaving my Primary doc to handle "the normal stuff!" I'm honestly shocked. So now I have two options. He also said he had NO problem with me seeing two endos at once, as long as both were informed as to current treatment. But........I must go see a nephrologist before any medication changes are made. I am to make my decision after that appointment, when we'll know if my kidneys are healthy enough to handle the florinef.

Good news!

Yeah you!!! As far as the nephrologist goes I think its a very good idea. (thats who diagnosed me) she trained at Vandy....Aloha M

Nina,

I went to the beach and prayed for all of you. This is a familys pain. You really love your dad. I am dlad you have been able to be there with and for hm.. you are a daughter he has to be proud of. I wish you some peace.... Miriam