Sallysblooms

I can't do much extra excercise yet, but just more walking and doing things around the house and that is exciting! I have an eliptical and pilates machine I used to use and I am hoping to use soon. I use exer. bands now. For the core, I put my hands on a cabinet in my living room and just bend over, straight legs and hold. I do leg lifts too. Standing, only when my hubby is here. Only a few of those. I do flex my feet forward and back a lot. I remember this time last year I could barely do that. I just took a bath. This is really neat. I filled it way up and used the jets. Hot water too! I used to only use lukewarm water, a couple of inches. I got too hot and dizzy with more. I have CFS and POTS and I could walk and do more with CFS once I got better. NOW, with POTS I have had to start from nothing again.

I also wrote in the other thread that after improving I have been able to use my wheelchair. I use it in my house on bad days when I can't walk without being lightheaded. It was hard to push the wheels at first but it slowly improved. Stamina improved, muscles, etc. This time last year I could barely walk, in bed all the time but my supplements have helped me to heal so well that I can usually walk fine, just not long periods of time. I am happy to see what the new year brings! Many people with POTS use w.chairs. We are all different and each day is also different.

There is a lot of information about gluten and the nervous system on the web. I stopped eating it about five months ago.

Can you find a doctor that is knowledgable about supplements? It always makes me sad to read about so many things that can get better, or at the least, be supported while the body tries to get the nervous system stable again. It is cruel that most doctors know very little and just do nothing.

Many, many people with POTS use a w.chair. Not strange at all...... I was unable to push myself, but now I am able to since my supplements are healing my symptoms. Last year at this time, I could not get out of bed, but I can walk a lot now and on big trips like to the mall or church, we take a w.chair for me. It is a tool many use, just depends how far along you are on healing. I just had the impression she needed to go with her kids and there was no other way so if that true, a w.chair was a good thing to try. You slowly get stronger and better at pushing yourself. I used to have to go vey slowly and rest after a little but I am stronger now. A process. With driving, I do not drive alone yet, just with my husband with me. That is also something to build up to. I was barely able to sit in the car for trips last year, but I hope to drive soon.

Merry Christmas and a Happy New Year to you all! I hope we all have a good 2011!

Wheelchairs have wheels, you can push yourself. They are really good to have.

There is nothing you can do about not being able to walk much right now. Does your hubby know exactly what is wrong and why you can't walk far? My family all know how the blood is not reaching the brain etc. You can print info and pictures. Do you have a wheelchair? I have two. We keep one in the SUV and one at home. They are fantastic. You can conserve energy and do more. Use a w.chair to take your kids two blocks. My hubby and I walk our little dog and he pushes me and I hold the leash. Use any tools you can! Also, I have a folding cane seat. That is also good if you are later better at walking and need to sit and rest. A w.chair would be great for you. I believe in using all of the things out there to help us as we heal.

Thyroid and other hormones play a large part too. So many reasons. As we get into our 30's and 40's and beyond our levels of hormones and ability to absorb vitamins changes.

Rude medical staff, no reason to ever have that. I don't put up with it. Every day is so different for POTS. Sometimes a tilt test shows one thing, the next day something else.

What did he mean it is a new problem? Dysautonomia has been around for a very long time. It amazes me what most doctors do not know about Dysautonomia, CFS, and most problems.

My doctor has a good brand and I took some. It saw a difference. Oddly the third time I felt bad. Could be a coincidence or just too much of it. Right now I try to eat a hard boiled egg each day. Great source of Choline.

I have a really great make up mirror. I can't remember the magnification but it is HIGH. I LOVE IT. I can see TEENY things that get in my eye. It is great. One time, I got a little bug in my eye and could not see anything, I didn't have my mirror then. My stugpid opthomologist was rude and told me to wait until morning. Was probably just scratched! WELL, I had several tiny WINGS in my eye all night. NO sleep, cried all night and at the eye doc office. I had bad scratches for a few days. I now can see things like that if it happes again. That is my eye story, ha. LOVE the good mirrors nowdays.

I can't believe they would not let you be with your son. Rediculous.

I used to have terrible trouble keeping appts. It is sad because that is really when we need help. Now, I always feel good enough to go. Hubby takes me. I have learned to use the wheelchair for long trips and it really has helped me to heal as well as my supplements and going Gluten Free.

I have been Gluten Free for four months. I have no symtoms or celiac etc. I did it after reading a lot about how gluten can affect the nervous system. Very surprising. I did it for my POTS. It usually takes longer to really get benefits, but if you are really sensitive you may feel it fast. I am impoving with my POTS. Most doctors don't know about how it affects you unless it is just Celiac. You have to do it yourself.

I went Gluten Free four months ago. I did it because of what I had read about how it affects the nervous system in some people. Very interesting. I did it for my POTS.

I have gotten better at handling it too. Funny. It is great to have the monitors to look and see and then be careful. I know I handle it all better, not everyday, but most days now. My numbers are better for heart rate too. May we all keep it up!

Has your doctor helped you with any supplements for a good immune system?

I just had surgery again three days ago. I did fine. I went "under" six months ago also. I was very i'll with POTS back then and did great. I used to worry too. The doctors watch you carefully and talk to you before going under. I hope you will get better soon. That is painful isn't it? I had it but I got well at home thankfully. Best of luck.

Before POTS I had migraines for years, all hormonal. It could be that. We always put all symptoms with POTS, but some happen for other reasons. Most docs are clueless about hormone balancing. I finally found one. No more migraines.

I had to have a hysterectomy a couple years ago. I take great hormones from a compounding pharmacy. I have a doctor that knows a lot about them. No flashes, migraines, or the rest of the things that happen from no hormones. Eye health, Brain function, bones, skin, etc are all so important to me. I hope I never have to go without the correct hormones. They have been wonderful for helping to support my overall health. I hope you feel better!

Good luck! I hope it helps. You can let your doctor know and the dose can be adjusted with the 5 HTP.

Caterpilly, you can Gogle Green's First. It is a powder with a LOT of good things in it. I add it to the smoothie I make each day. I am very thankful I am improving so much, I hope you get better Dana.

Wow, I would say no thanks to that test. Scary to do that to the tubes etc, for the inner ear. I didn't have a test for sweating, I can tell I don't sweat, you have to be careful if you get hot. I stay cool. For me, the lightheadedness was the lack of blood to the brain like most people have. Didn't he think that was it? I have continued to improve with my supplements.