Sallysblooms

I am so sorry!!! Sending prayers.... hugs to you.

I accept I am ill, but at the same time, I have fought it by learning about it and having good doctors that help with supplements. You don't have to just accept and give up, you accept and do all you can to improve!

I have no problems with it at all, everyone is different.

Most of the time, it is not the bp. That is up or down and it still happens. It is the nerves that signal the muscles/vessels to contract and help the blood get up dispite gravity. That is why I work on the nerves and muscle. Autonomic nervous system is not functioning correctly, Dysautonomia.

The blood pooling does it and also not enough circulation. Putting your legs up in a recliner as often as possible is good. Also calve raises and a calf flexing is good. I also rub my feet in the bathtub every night.

Having my Integrative MD's have been crutial. The correct blood testing to see what I need to add to keep my body supported. The right hormones and supplements to give my body all it needs to heal, especially the nerves since they control the muscle/blood vessels to help the blood get to the brain etc. Lipoic Acid Supreme, Liposomal Glutathione, ATP, Dribose, Carnetine, CoQ10, magnesium, lots of antioxidents, Supplements for the immune system on and on. I have CFS and I was doing very well until POTS hit ater a surgery two and a half years ago.

Slowly I am improving. I have a wonderful new recliner that is so comfy and goes way back. Having my legs up a lot is important. I have a supportive family and husband. He does the cooking etc. We have a couple that cleans the house. I make sure I get lots of rest.

I also have good "tools" to help like bp monitor, wheelchair for inside the house when I need it and outside, heart rate watch, shower chair, Med alert bracelet, a seat that folds to take when I need to. I make sure not to do too much, always having my w.chair or seat. That is important.

I also keep a calendar to keep track of new supplements and how I feel that day, I use stickers to make it fun.

Not going out in the heat except to and from the car when we go out to eat, errands etc.

I do exercises carefully. I have an elliptical machine, bands, hand weights and I just ordered a small pedaller, like a bike that you use from a chair for days I cannot use the elliptial. I do calf raises and calf flexing for circulation and muscle building.

Doing whatever you need to do to rest, heal and repair the nervous system is good. It takes time.

Heat makes many, many people with POTS worse. The sun is fine for me if it is not hot. But HEAT with or without the sun is horrid. . The nerves that signal to the muscles to control the blood vessels do not work correctly. I am working hard to heal the nerves that are my main problem with POTS.

Always good not to have low bp as a symptom of POTS.

Sounds promising.

Seems like most POTS patients get hot and cold.

HA, yes, I guess I will be thinking of him when I put make-up on too! Guess we will just laugh and go on slowly getting better and looking GOOD with our make-up!

Yes, the autonomic problems....I get really hot, and right now, I am COLD. I keep a blanket near by.

I had one dr tell me not long after surgery i couldn't be THAT sick because I put foundation on to go out to hide the redness from what my neuro suspected was Lupus; I didn't want people staring at my face it was embarrassing; I quit caring after that - it took 2 full min to slap some liquid stuff on my face - that makes me NOT sick? lol

This cracked me up.... even though it is VERY sad that a doctor could even come up with it. I get red and hot with POTS so I wear foundation too. I must be OK!!! GOOD TO KNOW!

BP can be high, low or normal during a crash. All over the place. It is awful when this happens, not often anymore thankfully. Take care! How long have you had POTS?

The lack of blood flow to the brain and the dysfunction of our autonomic nervous system in general causes our myriad of symptoms.

I started off two years ago incredibly ill, nausea, horribly dizzy and lightheaded 24 hours a day. I have a good doctor and supplements, no prescriptions. I now feel good unless I am up too long. I cannot do hard work like clean etc. but I can sit and feel great. I can walk now and do more and have a great quality of life. I hope to keep improving. I still get bad days, but not many really bad ones.

I think our nervous system wants to be well and balanced, it takes time and good care. Each person and cause is also very different.

Water is the best thing to drink for sure. They need to drink. I hope you can get more help. Do you have a church family?

I am SOOOO SORRY! My hubby works but also does the shopping, laundry and cooking. We have someone to do the cleaning.

I still don't understand why the kids cannot drink, not even water? Can't they get get water at the sink? That is scary. I am just so sorry.

That sounds similar. As long as an MD is there. The integrative doctors use all kinds of things to help, but they are Medical Doctors, just better since they know more. Of course each one is different as every MD is. They do not use ALL holistic or ALL western type etc, just a great balance and they should have great blood testing. Good luck!

1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.True. My bp goes up when standing. It always goes high and low. It used to be VERY high. Thankfully it is usually normal and good now.

2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?It gets higher when I stand and walk for sure. I sit at 120 or less so I don't know how much higher it would go. I keep track with my heart rate watch.

3. Does your heart rate increase when you eat? By alot? I don't think my h.rate goes up a lot when I eat.

4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFULYes, hrate and bp can be ok and I can still feel awful.

5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?I am lucky, I have no problems sleeping now that I am doing better.

6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??Yes, I used to get bloated and nausea when eating, now I am doing fine with eating.

8. Tachycardia - how high is too high? I really don't know what is really too high. Mine is better now and I always lie down and sit if it gets high.

You had asked what an Integrative MD is. Integrative medicine uses all avenues of therapies to help. Not just one thing like reg. docs that only know prescriptions.

It integrates all care, acupunture, supplements, regular medicine, etc. With most integrative MD's there is a lot of additional study. Conferences, travel etc. My doctor constantly stays on top of all of the supplements and how they help my symptoms and overall health.. She knows about hormones, and other therapy too. The two integrative MD's I have had have been much more knowledgable about blood testing, supplements, hormones, etc. I have never had help from reg. doctors with my CFS and POTS. The reg. docs know about their specialty or general things they learn in med school.

They recongnise that the body is a whole, all parts work together. They see the big picture. They understand nutrition, reg. medicine that reg docs know, they help with immune and hormonal imbalance.

It is complimetary med, using all safe therapies that help. It is usually a combination of things that help.

Wonderful news!

Everyone is different. I am very sensitive to prescriptions. Good brands of supplements are fantastic. Thank goodness we have them. The key is to have a doctor that knows how to help with dosing and brands. I do not do it alone. Blood tests and good guidance is important.

It is wonderful to work WITH our doctors! Helping them with our symptoms, showing them things we have read about etc. I keep a running list of questions and ideas. Then I consult with my doctor. Integrative, so his mind is WIDE open to ideas. He tells me about the best supplements for each symptoms and overall health and I have made a lot of progress with my CFS and POTS.

I agree, being polite about everything is important of course.

It could be a combination.. SO sorry! I have had several sugeries with POTS and I did ok, but NO pain med. I have never been able to take any, just anti inflammatory meds. Even after major hysterectomy.

I am really sorry, it is so hard!