Sallysblooms

I hope you find another doctor. I would find another fast.

I hope you find a strong man in the future. I am so very sorry for the pain you are in now. I know you must be hurting so much. There are men that do understand illness. Most people will be ill in their lives. Take good care of yourself.

Oh, I see Rachel. Some do have to be kept there. I see what you mean.

My vest does not go into the freezer or fridge. Just the ice packs. Each vest is different so find the one that works best for you. Something else wonderful!!!! AC personal fan. I have one, use it when I go out since the car takes a while to cool. Also, great for a doc. office when you get hot, even if the office is cool. I also have a darling fan that sits up that I use at restaurants etc. I can't find that link at Amazon. I need to get pics of them. LOTS of great things to help us out there. http://www.amazon.com/Small-Fan-Mini-Air-Conditioner-batteries/dp/B003KCT4UC/ref=sr_1_13?ie=UTF8&qid=1315065155&sr=8-13

I posted about the cooling vest. YOu can look for the thread. I have a Polar vest. Soft and so nice. Link for the thread is below...

I just had mine after waiting until I got well enough from POTS. I was able to sit for it, in my wheelchair. Just call and see if they have machines that lower. Most do. No, never had anything neg. I have taken them for years.

Docs don't always understand. POTS happens to people that are VERY active! Even with CFS, I walked daily. Then WHAM, POTS. No more long doggie walks. NO more time in the outdoors in summer at all. MILD exercise once we have POTS is good for circulation. If you can only move your feet/ankles up and down, that is what you do. When you are better, you SIT and do a few rounds of a peddler bike. The kind you use while in a chair. Just one minute, slowly and work up a bit. You can use cans or small weights for arms. A good one is just to get on your toes a few times. Calves raises. If you have to, make sure someone is with you. Moving is exercise to most of us. I have a peddler and wieghts. Keeps our blood circulating well, and keeps muscles from atrophy. Helps the blood move up better. You do have to be careful of course. I like to do a few exer. in bed too. Little sit ups, leg raises....

The vest stayed cool for 3 1/2 hours. The wrist bands do not last long, just because they are smaller. The back of the neck ice pack didn't last as long as the front ones, my neck is very warm of course. But this set comes with all ice packs to replace! So as they warm, you can replace. When the thunderstorm came and elec. was off, my hubby put the packs into the vest and it made a nice. COLD, soft blanket. He put it on top of me since I wanted to lie down. It is a bit heavy, 5 or 6 pounds maybe, not sure. But with POTS I am sitting a lot anyway. Very nice company.

SO many things are nutty about this. I have CFS also, POTS is often a part of it. POTS is CRAZY. My son and his wife were here and I kept asking them if they want an ottoman so they can put their FEET UP! HA, they didn't. Not EVERYONE needs that. I have mine up in my super fab recliner all the time. Also, I keep telling my hubby when we go out to eat, etc. HOW does that person stand all day! That is impossible! You know our bodies really are a miricale. Fighting gravity is HARD. We all know that.

Just in case your doctors do not know about supplements to help our nerves that need a LOT of support and healing...Alpha Lipoic Acid is amazing. You can Google about how good it is for our nerves. Has healed my feet.

Here you go!!!! It is soft. My hubby put it on top of me once yesterday when the elec. went out in the storm. I laid in bed. I am so happy with it all. I bought the whole package with accessories and extra ice packs. http://store.polarsoftice.com/polarshop/pc/viewPrd.asp?idproduct=33&idcategory=14

I received my Cooling Vest last week. Well, I had to TEST it out the day before yesterday TWICE!!!! Our Central AC had a part break so It took a couple of hours to get that fixed. I wore it and it kept me VERY COOL. It got to 82 in the house, but then cooled back down. Later that evening we had a thunderstorm. NICE, since we are in a drought here. Well, nice until the electricity went off! Again, Cooling vest! I was so happy to have it. Came with wrist wraps and a neck wrap and two sets of ice packs for all.

I have high bp with my POTS. I take Benicar and it is normal with that. I am so very sorry about your baby!

We don't have to kneel and get up and down at my church, but of course everyone gets up to sing. I just stay seated while hubby gets up. Works great! I am so happy to be back at church again.

I have had CFS for 20 years and POTS for 2 1/2. Before that, I had to have a vestibular (balance nerve) cut because a virus had destroyed it. Verigo constantly. Head surgery, terrible. SO, I have had problems for 30 years. POTS was a sad thing because I had gotten so much better with my CFS, then POW, POTS TIME.... I have improved enough to enjoy my life even if it is inside my home most of the time. I have a great family and hubby so I am blessed. I have been SO much worse so I am as ok as I can be with the way I am right now. This is all crazy when you think of normal people, but I always remember how many people are as ill or much worse that I am. It is never easy though. I pray for all of us every night. Sally

I understand really!!! I know you were joking. True, we all have our regime if we are lucky. So many have not found help. I haven't been carefree or normal in many years. I had CFS for 20 years, ha. I am so used to it, just part of me. The supplements have really done a great job for that, now to get better and better from the POTS.

Hi, I don't feel like my life is my protocal. I HAVE a life because of my supplements. I am SO happy to have doctors that test and know supplements and how to help me. I would be throwing up almost daily with migraines if it were not for Dr. Dzugan's twice yearly testing for hormones etc. I would not be able to sleep either. That is just the beginning of how I have been helped. So, it is a lot of trouble, three times a day to sit and take my pills, gels, powders and packets but I wouldn't trade it for the world!!!! Sally

The medical bracelets are just to tell others about medicines I cannot take and allergies.

I take approx 120 mg of CoQ10, powder and also oil. I use liquid Carniclear, one teaspoon per day. Not sure what that is if you take pills.

I have really good doctors that know supplements thank goodness. So I do not have to guess on dosages and brands etc. I have a schedule of supplements three times a day. Long list. I get really thorough blood tests twice a year, had saliva testing too. Neurotransmitters, vitamins, the whole nine yards. Hormone testing has been very good too. CoQ10 has been very good for my heart rate, bp etc. Correcting all hormone imbalance was the first thing. Bio compounded hormones like Tri est, pregenalone, progesterone, 7 Keto DHEA, Thyriod etc. Supplements for the immune system like Vit E, Liposomal Vit C, Astragalas, AHCC, Proboost Thymic Protein, Maitake D drops, Vit D drops. Supplements to help the adrenal glands like Adrecor. The methyl vits like B12, SAMe, etc. D-Ribose powder two times a day has been SUPER good for energy. ATP under the tongue and Liposomal Glutathione is great! Carnetine and Co Q10 have taken my brain fog away completely. 5HTP raised the Seratonin level so I could sleep and feel good again. It goes down like other things with stress and illness. Alpha Lipoic Supreme is healing my nervous system and helping the nerves in my feet. Has been great! Two great things for CFS and POTS for me are Liposomal Glutathione and ATP. I add protein powder and First Greens to my smoothie each day. They are full of things that are good also. I take fish oil also. Antioxidents are SOOOO important, like the above Vit. C and E and A good multi, but the MAIN things to help I think, since I had already been on many things for a year, then my doctor added Liposomal Glutathione by Livon Labs, and ATP.

I got it at Target! I usually order them, but hubby and I found this one. I have it on right now. It is by far the cutest I have. It is New Balance brand. The James Avery bracelet was $199. But then you pay for the engraving. http://reviews.jamesavery.com/8342/B-268/physician-e-m-t-alert-on-giotto-bracelet/reviews.htm I wear it when I go out since it is so nice. When I stay home, I wear the one below. I added a J.Avery charm to it! I also had a J. Avery ring on in the pic, ha. He is a Texas artist, has been for years. Love all of his jewelry, have since I was little. Meg, I did understand what you meant. Here is the other bracelet. http://img.photobucket.com/albums/v492/Sally11/frame.jpg WOW, I did it without adding the pictures this time!

Yes. It has a chest strap. I had one and then started wearing the non strap ones, I have two of them. They didn't always give accurate readings, so hubby and I found this one. It is small and nice. Not black like the last one.

I know I can't post any pictures here. I will try just a link. Just got a pretty heart rate watch today. I have had several with no straps and one with a strap that was black. I found this cute one, nice and small. Most are so awful looking. This is also one of my med id's James Avery jewelry. I have two. I love trying to find pretty things for heart rate etc when I can. Well, I tried and the picture came up.

Integrative MD's help with all my care, supplements, blood testing etc.

BP can be high low or normal with POTS. I feel worse with high bp. Mine doesn't go low. The ANS is dysfunctional so we can feel bad no matter the numbers.