Miriam Poorman-Knox

I bought trip interruption insurance when I flew to Scotland last year. You don't have to tell them why. You may want t call and chat with a travel agent and ask what they suggest???? Hope you go and enjoy your trip. Miriam

Abnormal liver enzymes are also associated with NASH non-alcoholic steado hepatitis. It is good to check out. M

I would run it by a pulmonologist. They know sleep studies and the different things that would explain. That has been the best help. If you get a good sleep doc. they don't necessarily have to be an expert in pots. The symptoms and problems will guide. Hope this helps. M

There are also some issues I had a lack of estrogen and the tissues don't "plump up". It is really important to not assume all issues are from pots.

When your issues are that bad I recommend an opthamologist . M

Michele,

BREATHE, BREATHE...

This is so overwhelming. This diagnosis, all the "information" that we "eat" and breathe day and night. First in church sit in a space that is nomally empty if you feel that uncomfortable. I have always had people no visable reason, need to sit. Remember whose house it is.

I do know people go into remission. Your life will be different. Folks with diabetes, parkinsons,arthritis, ....... Perhaps you would want to cut down on your work hours to include exercise. I would think long and hard about giving up my job. That said you may need to. I would not do that with out counsel. This is big and I think important to have someone to bounce it off.

My dog is demanding attention. Hope this helps....Miriam

Turn on the A/C. I always have a fan circulating air even in winter. Folks with masto. tend to get more heat build up in head/face. Glad you were able to have a nice meal with your family. M

Might I suggest seeing a Uro-Gynecologist? I was having some different symptoms. My doctor sent me to uro-gyne. She was wonderful. When I made a comment about having seen a urologist she said "its all in what you do". Much, much different. Just an observation. M

You get too HOT. Thats why many of us require a/c. Even in Milwaukee !!!!! Your body isn't able to cool itself naturally. They sell coolers to wrap around neck.

The point here is that there is some control. My non-physician order: Never do it until you faint. Your doc can call me. This is basic physiology.

FYI...........

Its really best to do 3-4x day for less time. M

Tilt training= standing or sitting upright, leaning against a wall, until syncopal symptoms develop and then laying down again. Progressive gradual increase in the time upright has supposedly been studied and shown to help the body to slowly adjust to upright posture and improve (but not eliminate) OI.

Has anyone ever done this? Did it help? How long and how often did you try?

This while initially seeming wierd, makes sense physiologically. One of the main points we need to work on is muscle training. Doing this would help your ody to respond to the stressor in a safe environment. Actually when I started teaching older adults and special needs fitness classes I did this. My theory is that my job is to make sure that in that situation if they fell, they could move or get up. We had amazing results. Even had a man with stroke who started in wheelchair and later after a couple of years he could walk with a cane.!!! Sorry fr the trip down memory lane.

Suzy,

Two things, first you need to see a doc for the urinary incontinence. Could be an infection. Also some of us have problems with a lack of estrogen, and it effects all systems in our pelvic area. Second, I might try eye drops-no preservative- and rinse eyes. ( can refrigerate) feels great. And get that looked at. I am a frequent flier at tthe eye and ear clinic here. Just like Cheers "Where Everybody Knows My Name" !!!!!!!! M

Nina,

I am so sorry. I too have this happen. Won't even try to suggest any meds options. How about a luke warm, cool bath ? Oatmeal bath. Ice bags armpits, groin, neck? Hugs. Don't cha just wish ya could have a shot of hooch..................... Prayer hat on for your dad. Candle is burning. Miriam

When this was first being correctly diagnosed, my doctor said "I'd be worried if you weren't a bit depresses having heart disease, dysautonomia,etc a" at age 43. So The door was open. I believe that having someone therapist or whatever to talk to , just for you is the best gift you can give yourself. M

I too have psychiatric diagnosis. I see a psychiatrist 1 every 6-8 weeks. He is the medicine man. He also listens. I also see a psychologist who only sees people with medical problems. Sometimes we have a problem solving time. My psychiatrist insists on having someone to help you travel the road. I have also gone to psy/psychol paid by me and asked what they would and would not put in my private medical record. M

The doctor who diagnosed me said there will be "remissions". As far as the testing. Two things. 1. Your insurance company sees this pattern and in thee long run not good. 2nd. On my soapbox. So many people cannot get any medical care at all. And your doctor is using the resources, not for someone in desperate need. You are an ethical person. Talk to your doctor and you can do a literature search here. And there are articles to reference. Regarding testing. Good Luck. I admire you for being so aware of these issues. Miriam

First....A TILT EERY YEAR!!!!!!!!!! Most say one positive one is all you need. Do you have cardiac issues. I have an EKG 2x year, I have a cardiac problem. A stress test? I would ask her/him if its not overkill. I think that a 24 hour urine catch is more helpful. Comparing volume, sodium etc. Personally I would just ask if this could be every other time? Congrats on school.....Miriam

Almost anything we try will take weeks.not overnight. We are replintishing our supply of estrogine or whatever it doesn't happen immediately. I had to use the dots a ring and cream until I had replentished. M

My thoughts are that you need to see an opthamologist. I would go to a university practice. I too had these symptoms and went to the eye clinic at Pit. I had a retinal issue, this took some time to resolve and then got dry eyes and have to use eye drops many times a day. There is some discussions regarding high pressure in our retina and other issues. I am so glad I went. Have had a couple new presciptions for eye glasses in the last 3 years, but I can see !! M

BTW....When I worked at a health club a while ago, and was in the best shape ever, I had problems with my eyes. Went to the opthamologist. He had me step up and down in the stairwell right outside the clinic door. When he checked me my eyes were very dry due to exercise. I had forgotten about this until now.

There is no way NOT to be anxious about this legal situation. My guess is they will about 10 days before trial start offering settlement. Then your attorney will earn his/her fee. I worked for a personal injury attorney as a patient advocate. so if you do go to trial, make sure your rest time inclused the reason you are there. Hip, Back Leg..........It all has to come back to that. You could also get a letter from your orthopedist that you need periodic rest....whatever..Godspeed

Miriam

Prayer hat is on. M

My vote is PCP.......

What I meant was that OI or POTS are the "umbrella" then there are other diagnosises. And that with time and treatment we do find as much as we can. Yet there are some things that canot be explained. M

I went to Scotland last Sept to meet with my daughter. I was worried. Always keep water with you. You will need to rest more just plan that into your day. Most important for me was to eat well. It really helped. Do your exercises for muscle tone., as I said can be done on floor. Pack layers. I did and do get a headache after a trip like that, so I made no plans for the first day just acclimate. Salt tabs in purse. And make sure you have a note from pcp about IV's if you need them. Its sssocialized medicine there. You can get the IV's with a note and Dr. #. Cheers M

I remember a thread about the Dinet cards. I have 10 and 3 bracelets if anyone wants. M