yogini

I tried a gluten free dairy free diet for 4 weeks a couple of years ago. I can honestly say I felt much better. But the diet was hard for me to keep up - I am pretty functional, so I decided it wasn't worth it. I think it is definitely worth a try just to see how you feel if you can manage it,

Rama, I have a body fat scale which measures body water percentage too. I haven't noticed any link between my weight (or body water) and my symptoms. It sounds like there might be a correlation for you, though, even if there isn't for the rest of us...

My main complaint is dizziness too. I was told the same thing about my symptoms subisiding after lying down, but I know now that is not the case. I went through 3 months of vestibular rehab before figuring out my dizziness is just POTS!

That is great that you can run three miles. I found that exercising has held me to feel much, much better overall. I don't think it can "cure" POTS or stop a relapse, though it may make things less severe. Rama, how high does your HR go when you run? I too have trouble running - actually, I never really liked running but I assume I would have trouble running. I built up times swimming, biking, even on the elliptical, but each time I take a break from it I have to start from scratch 2 or 5 mins at a time. I get headaches, etc. and my heart rate does not calm down - I have to wear compression hose during exercise and sometimes even have to take a BB after. In general, I think my body isn't geared for cardio. I do better with yoga, which has a more relaxing/calming effect.

Stupid question: How do you know whether you have inflammation in your body? Are there certain symptoms related to it and/or a test?

Thanks for posting this. I have no helpful suggestions, but thinking of going vegetarian too...what are nightshade vegetables and why are they bad for you?

Yes, even about things that have nothing to do with POTS!

I have to agree with firewatcher - I thought most people with POTS/dysautonomia had healthy hearts. I hope you find a good specialist that can help you!

We used plenty of salt/seasonings in our cooking at home - it was also from scratch but I would not say it was low salt. Though after I got sick I tried going to a nutritionist who said I wasn't getting enough salt for even an average person. That's when I was out of the house and trying to eat "healthy". Since then I have added two cups of broth to my diet and that has helped a lot. I don't think salt intake played a factor in my developing POTS, but I definitely feel better if I keep up the salt.

Thanks for the link. It is an interesing blog! Though some don't, I think many of us have room for improvement. Our bodies are all different and different thins work for different people. It is always nice to hear about something that is working for someone. There are SO many things out there to try. I have had POTS for mre than 6 years and I am still experimenting and still improving. I don't think I have cardiac atrophy as I have remained fairly active throughout my condition. Exercise has been a big part of my recovery.

You are right. I didn't care so much until getting sick and then cleared a lot of prepackaged foods out of my diet...but something like Gatorade I didn't think was so bad, especially since it is "recommended by doctors" for POTS. Thank goodness I switched to broth years ago and don't drink Gatorade that much anymore. Now I don't want to drink it ever again!

I know so many of us drink Gatorade. Yesterday somone at work told me he gave up drinking Mountain Dew and Sprite because of BVO - a chemical substance banned over 100 countries. He said it's also in Gatorade and most colored beverages to stop them from looking cloudy. Doesn't sound too appetizing! Have any of you heard about this? Wondering if it's real or just paranoia! Here is an article: http://www.sandiegoreader.com/news/1999/ju...y-do-soda-comp/

This has come up a few times before: http://dinet.ipbhost.com/index.php?showtop...4&hl=nurses Also, I have read in medical literature that health care workers are more likely to get tachycardia, so not a surprise that the same goes for dysautonomia. There was a research paper on the topoic I saw a while ago, but couldn't find it when I just looked. But here is an article which mentions it: http://findarticles.com/p/articles/mi_qa36...07/ai_n8979994/

It still might be dehydration - your body may not be retaining the fluids even though you are drinking. You also may be drinking too much which could be washing out you electrolytes. You may want to add salt or drink a sports drink - or just talk to your dr about how to get re-hydrated.

Funny, I think do better walking than standing still. I posted a while ago about the sneakers with the wheels, but apparently they are bad for your feet. Someday they will come up with the perfect invention for us!

I'm in the NE and had the best day today that I had in weeks. And here I thought it was because I was salt loading for the past couple of days and it kicked in. Interesting!

Alcohol is generally a vasodilator, allthough it can be a vasoconstrictor if you drink lots of it. When our bodies are hyperactive, alcohol can take the edge of and calm things down. I think it's a trade off between the de-hydrating and BP lowering effects vs. the calming effect. Different strokes for different folks. Docs aside, I think plenty of people on the forum drink occasionally. Alcohol doesn't really make my POTS better, but I am at least at the point where I can have a drink or two every now and then without much after effect...and I'll take it!

Reen, It's so hard to say. POTS/dysautonomia is very up and down and there can be so many factors that can affect things - your activity level for a particular day, what and how much you ate/drank, salt intake, menstrual cycle, even weather/barometric pressure. Sometimes when I wake up my HR lying down is 65 other times it's 100. I've found that there isn't always a rhyme or reason. I think it's the same with frequent urination or any other symptoms. You can keep a journal - I did this at first even recording my HR and BP at various times during the day. That can be helpful, but in the end it's always a little unpredictable. I agree with you - I don't think most drs get the side symptoms of POTS ad I wouldn't necessarily look for/take a drug for any symptom unless it was one of your worst.

Don't be mad at yourself. Just think, you could have been in the middle of nowhere when POTS came crashing down on you -- that has happened to me before! You are in a safe place with your sister nearby. I can totally relate to being mostly normal and being taken by surprise when POTS rears its ugly head. It is really scary. I don't know how others do it on a daily basis and I don't know how I did it for so long. I hope that (and I'm sure that) this is just a temporary flare up for you - due to activity, virus, etc. and that you'll be back to "normal" soon. I have asked about IV fluids before and all of the doctors I saw didn't have the capabilty to give them and told me to go to the ER. So maybe that is an idea...but I hope you feel better and don't have to go there. In terms of travel, you might be able to make it thru with a wheelchair. I know I was in the airport a few years ago right before the holidays. I got sick in the airport and nearly passed out. They had to call the ambulance, which examined me and said I was fine. I was so desperate to get out that I got a wheelchair and hopped on the flight. It was not ideal, but I made it and was so glad to be at my family's place where they could take care of me. Good luck, feel better.

I agree with # 4. I think frequent urination is just a symptom of dysautonomia, not necessarily just adrenaline surges...though I am sure that can cause it too.

I think most people with dysautonomia have low BP or at least on the low side of normal. Some people with POTS have normal BP. A few have high BP, but it is not very common. I don't know the numbers, but pretty sure that POTS is the most common form of dysautonomia. Some drs disagree, but it is possible to have bot POTS and NCS/NMH/OH. There are a few on the forum with both diagnoses.

I think the distintion may be between salt and sodium. 1 tsp salt is about 6 grams and has about 2400 mg of sodium. So when you see higher numbers, it may be referring to salt and not sodium. I totally agree with Nina. Start small and build up. I've found that I don't need to max out - but having extra salt every day through a couple of cups of chicken broth makes a huge difference.

Definitely. We had a few weeks of rain horrible rain here in the NE which were miserable for me. Sometimes I can tell when it's going to rain the next day b/c I don't sleep well the night before.

I have many of the problems you are describing, but don't have EDS or cervical instbility. I have been working on my upper body strength for a few years and my problems/pain are much better. So don't worry too much yet! Talk to your doctor and see what he/she says. I hope you feel better soon! By the way, I didn't see a chiro. I started yoga and then went to physical therapy to strenghthen my neck, upper back. Probably lots of different ways to approach the same issue!

If it makes you feel better, I say go for it. Just make sure you drink enough water to stay hydrated.