Sallysblooms

Just like with my CFS, POTS may not have a cure. Many, many illnesses have no cure.

The great thing is that with the right doctors, we can improve dramatically. Treating symptoms and supporting our immune system and the health of the entire body is important. The right supplements are working for me. We need to support our body so it can try to heal and get the nervous system balanced again.

Caterpilly, good luck, I sure hope you find a good doctor. It is such hard work!

I have no problems at all with Adrecor and heart rate. It is getting better! I googled your other supplement and saw a bit on it, maybe it is that one. Hard to say, we are all different. Maybe you can let the doctor know. Then you can find out what it might be.

There are so many things you can do for POTS to heal and feel better. The doctors need to know about supplements and blood tests. Most are clueless. We all have to know how to find good doctors and learn about supplements ourselves. I am guided by my doctor with my supplements, the right dose and brands. I have read everything I could find daily . I also bought a textbook on the autonomic nervous system.

Julie, I loved what you said ...Dust yourself off and look for new doctor. Very good advice when people do not get help they deserve!

I have extensive blood tests done every six months with the program I am in. My doctor and I knew my Seratonin was low, but it was soooo low. I take 5HTP and SAMe daily they have turned many problems around. I get another test soon. I can't wait to see how everything improved, I am so much better since I take the supplements I need. I take Adrecor for adrenal support and that is good too For the neurotransmitters nor epinephrine and epinephrine.

Do you have a doctor that can tell you what it all means?

Wheelchairs are a great tool just like heart rate monitors. Whatever helps us to feel better, do more and heal is great. Just like supplements, we need to use all that is available. I also have a folding stool to use. I don't always need my w.chairs.

I have no idea why most doctors are clueless about POTS and supplements. Nueropathy is very often the reason the muscles do not squeeze the blood vessels correctly. I have read a lot and even bought a textbook about the autonomic nervous system. Guess many doc forgot to read it...

My doctor told me about lipoid acid. I take Lipoic Supreme. It is given to diabetics for nerve problems. You can learn about it. Maybe you can find a doctor that is knowledgable about supplements.

I had lots of problems with my feet and started taking the dose my doctor told me to take. All is fine now, I started early. I wish all doctors knew easy things to help but most do not. Very odd to me.

I use make up for going out with my hisband, not at home resting.

I DO love to paint my nails and toe nails a lot. I use Zoya, not toxic like most polish, I love it. I order it and I have quite collection.

I have been taking Lipoic Acid and stopped eating gluten. Both have done wonders for me. Great for the nervous system.

I can't read the article for some reason. I always wonder why most doctors are clueless about supplements. Thankfully, my doctor is an integrative doctor that knows about all kinds of ways to heal and prevent illness.

I use Touche Eclet also. In a gold pen, right? Love it.

Great hints! I love to feel comfy and look nice. Nit really a product, but an idea. I have a great collection of maxi dresses! They are comfy and sooooo pretty! Like wearing a nightgown, but you look and feel great! I have really pretty short sweaters to go with them, short sleeved.

I love comfy and cute slippers too. I will have to show pictures. I am not sure how to show pictures with my iPad. My laptop is having problems.

Hi, I'm so glad your bp is better! I have POTS so that means the bp can be high or low or varied. I never know what the numbers will be, bit I still feel lightheaded.

I guess the main thing with Dysautonomia is the way it is so unpredictable.

This is an old thread, but my Urologist wants me to take potassium citrate because I keep getting stones that do not pass. I keep having to have Lithotripsy. Are the potassium pills safe?

How often do you need blood tests to check the level?

Bumping for those that asked me what I take.

I do VERY well on D ribose and CoQ10. I have doctors that help me with the right doses and brands. That is important.

I have blood tests every six months so we know what I need and my doctors figure out the dose, etc.

I take a LOT of things. I was sooooo ill when my POTS began, horrible, could not walk.

My doctor told me about Dr. Dzugan so I got on his program and I also have my integrative doctor. I take compounded hormones like estrogen and progesterone,

other hormones too.

I take vit.E, vit.C, 5HTP, SAMe, a really good multi, Adrecor, Carniclear, vit. D3, d-ribose, Lipoic Supreme,

Calcium, magnesium, fish oil, coq-10.

For my immune system I take Maitake d fraction drops, AHCC, Proboost Thymic powder, vit C I mentioned above.

I make a really great smoothie each day too with Greens powder, protein powder fruits...

The CoQ10, Adecor and carne tine and Lipoic Acid have been great.

I have CFS and POTS. I have improved so much, but I have a long way to go to be able to walk long amounts again. I have many good days at least. I can go out now to eat out, etc, but for lots of walking, I use my w.chair.

I am just very happy not to be dizzy 24hours a day anymore! as I said, I have bad times.

Ihatebananas...

I take supplements that have done a wonderful job. I have two doctors that help me with the blood testing, then dozing and brands.

I sleep on my back with several pillows and I move around before getting out of bed during the night and in the morning. I also drink water each time I get up.

Yes, on bad days I feel dizzy and nauseTrd with any movement. I felt this way every day for a few months, but now, just on bad POTS days.

I always feel better knowing I am not the only one. I keep a good watch on it. At first, when I had no idea why I had become so terribly ill, I thought the bp was my problem. It was POTS. Thank goodness I had a good doctor and supplements, bp med too of course. Still have a long way to go, but so much better.

I don't know what to do, but I hope you feel better. Are you going to call your doctor?

I usually have high bp. It is better with my meds. It does go lower too, but not super low like many OI patients. How many of you have high BP?

Ii don't have it. My feet were having problems though. I also didn't get enough circulation since I was too sick to walk for a long time. My doc told me to add Lipoic Supreme to my supplement regime. It helps nueropathy. It worked great I also make sure to move my legs a lot now.