Sallysblooms

My heart rate as well as my BP varies. Each day is very different. That happens with most POTSYS. Never just one way, up and down.

Each doctor is so different. There is no rule about what kind of doctor will know how to help. I have an integrative MD. He knows all about hormone balancing so my body has that all balanced now and I have no more migraines. Another integrative MD knows about my CFS and POTS. I get tons of good help with supplements. Doctors with knowledge about supplements is good to have. Helps symptoms like brain fog, etc. I want to have all of the support my body needs to stay strong. Blood tests are important also, many doctors don't know what to do there either.

I was in the ER last week after having my stent out from kidney stone surgery. My ER doc was great, he knew about POTS. He let me tell him what I could do. I knew what I could not take. He was great.

I can feel your sadness in your post..... I deal with it and have had CFS since my 20's but I had a good childhood, able to do what I wanted. I would be so sad to see a child have an illness. My son is grown and healthy. I am so sorry, this may take several years for her. I don't think my POTS will ever go, like my CFS. I just hope they will keep improving. Has she seen the videos with the girls with POTS? I have enjoyed them and helped me when I was first ill, before I could even travel four hours to see my Integraive doctor. That the the doctor that was able to help me. Most others knew very little. Lots of reading, and taking the supplements that have helped my symptoms, watching videos etc....all have helped me stay positive. Also, my great family and hubby. She has you and that is wonderful. We all support you here.

I hope tomorrow you are better!!! I am sorry you are feeling so bad! Let us know how you are doing!!!

The key is finding a good doctor that knows about the supplements that will support our bodies. I have integrative doctors so I am helped with many supplements. I take so many that have helped me. You can actually take ATP under the tongue and Glutathoine in Liposomal form. New and wonderful ways to get these important things! CoQ10 is great, DRibose and so many others. ALA of course. They can support our health so our bodies can heal better.

I was too ill for the tilt test two years ago. I said I didn't want it. They are so variable, so I had other tests. I have no idea why a wheelchair would matter for that if you walk off and on. I am not a teenager that faints. There are many, many that are older and do not faint. I would have but just made sure I didn't walk too much. I am better now but I still have to watch how much I stand and do.

Mine has been really high. I have been taking Benicar. It has gone to normal most of the time so I have been able to cut down on it by 2/3! I try not to take prescriptions so that is good. That is the only prescription I take.

There is no way to test just a little sensitivity and it can be bad for the nervous system so I don't eat gluten...just in case.

Your doggie is adorable! Yes, they are wonderful to have and so relaxing to hold.

Yes, a Shih Tzu! I bet your pup is adorable!

Victoria, I cannot tell you about your Ambien. I also cannot say why you now have the other types of neuropathy. I wish I could. I only say what works for me. Just in case something can help. We all have to take meds. We just have to learn about them and always be careful. This is all so hard. Maybe others will have information. Read all about antioxidents. They are good for a lot of reasons. We are all here for you!

I am on 600mg-900mg of Lipoic Acid Supreme. My doctor told me what to take and it can go higher.Good if you have a doctor to help with dosage. I am doing great on what I am on right now. I am so sorry you are in pain. It is good to try to help the nerves with the things to help them be healthy. I caught my problems early and I try to not take prescription meds unless needed. They are hard on my nervous system. HUGS to you.

I get all doses and brands from my doctors. I don't do it all alone.

I take so many good supplements. 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, Vit C, Astragalas, AHCC, Proboost Thymic Protein, Maitake D drops, Vit D drops. Supplements to help the adrenal gland like Adrecor. The methyl vits like B12, SAMe, etc. D-Ribose power two times a day has been SUPER good. 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 smoothy 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. All of my supplements are guided by my doctors. Dr. Dzugan is in charge of the hormones. No migraines now. They have a schedule, three times a day for me. They look carefully into the brands for purity also. This has helped my CFS not be much of a problem now and is helping my POTS that I have had for two years. I was unable to get out of bed for many months, until I could see my doctor and get the tests. Now, I function well and I am happy again. I stay COOL, do not overdo it, never miss my supplements, DRINK a lot of water, etc. My bp is usually high or normal, sometimes low. Goes up and down. Before my supplments, it was VERY HIGH, that is wonderful that I rarely have it so high now. I do not take presciptions. My bp is usually high and normal, not low. I also stopped gluten in case I am sensitive since that can affect the nervous system. My doctors are helping me to help the symptoms and support my body so I can heal. I get blood testing twice a year to see how my vit D, B12, and all other things are doing.

I also stopped eating gluten. It can have an effect on the nervous system in sensitive people. You can't figure out if you are a bit sensitive so I just stopped. Anything to help my nerves! I stay away from toxins when possible. Everyone sould make sure thier blood sugar is good. No, I do not take prescriptions. Have not ever taken Neurontin. Do all the reading you can about nerves and healing. Many doctors do not know how to help. Thankfully, I have an integrative MD that does.

I have CFS and now POTS. The best doctor has been an Integrative MD that understands these illnesses and how to support the body in healing and also help symptoms with supplements. Also, the correct blood tests to find out things you need.

The correct amount of ALA and good brands help many people with neuropathy from Diabetis or whatever reason. My doctor tells me the amount and best brands. She looks into each brand for purity. Nerves use a lot of energy and I am working hard to repair them. I read a lot about how to do that. Keeping good blood sugar level is important. Staying away from toxins. I am trying to think of all of the notes I have taken from reading. Antioxidents like Glutathion, Alpha Lipoic Acid, etc are great. I take Vit C, Vit E, Lipoic Acid Supreme, NAC, Liposomal Glutathione and B vits.... I "feed" the nerves and help keep them repairing. This is all paying off for my POTS. I have CFS too, so antioxidents and all of my other suppelments are good for overall health.

Hopefully, he will help you with supplements, they did a wonderful job for my feet! My POTS is Autonomic Neuropathy so I have been doing great by helping the nerves get what they need.

Yes, on my CFS forum, there are a lot of us with POTS.

I have CFS, 19 years now.

I have that printed out. Good one and good drawing.

I have two wheelchairs. One to keep in the car to use at large stores, doctor offices, one is inside, nice and clean. A wheelchair is just a tool. Just like our blood pressure machines and heart rate monitors. It is wonderful to have it so you can go out and be with others, eat dinner out, etc. It helps you save energy so you can heal. Also getting out is good for us. I can go to church again, large stores etc. My hubby pushes me. I am much better now with my supplements so I can walk a lot more. My hubby just went out and bought my 2nd one. I ordered the first one. Hubby took this pic of me "walking my dog." I cannot take long walks yet. The w.chairs did not decondition me, quite the opposite! I got stronger and happier. I have amazing treatment with supplements and I am doing great. I hope you have a great doctor, it is very hard to have this....we understand....

POTS can have high or low bp. That is not what defines it. The Error happens high and low for me. Thankfully my bp is coming down now after several years of high bp.

It is in my pill with my SAMe. It is one of the important things I take.