yogini

Get them on my arms and in my chest. It is scary. I always just chalked it up to POTS. I am not a candidate for mast cell

I would try people that you know if you can do some volunteer work in organizations that they belong to. They might better accommodate you if they know you.

I don't think most people have low blood sodium or low blood volume, it's just that increasing sodium increases BP/blood volume, which help many of us compensate for other mechanisms in our body which aren't functioning. I would not worry about 20oz of Gatorade. I drank a lot more than that during my worst.

I agree staying calm helps somewhat. I think having an open mind and being willing to try different things and not constantly being in fear has contributed a lot to my recovery. There is somewhat of a mind body connection, but POTS is ultimately a physical condition. I have done yoga and breathing exercises seriously for years. It has not cured me but has helped me to feel better overall. Breathing exercises can calm my HR a little when it is acting up. I still need medicaiton, though.

I tried florastor. I am not sure it made much of a difference for me. Part of the problem may have been that I didn't stick with it long enough. It is supposed to be one of the best probiotics. If your dr recommendd, definitely give it a try

Do you have POTS? You could be burning calories due to your HR.

What meds are you on besides inderal? I think that it is a fast acting beta that can be taken as needed, and if your dr OKed it I would not worry about taking more. Also, have you kept teak of when you have these episodes? Is it triggered by food, activity, hormones, etc?

Spanx and other fashion shapewear didn't help my POTS at all. Compression hose helps, but is uncomfortable. For some reason I couldn't tolerate compression hose on my stomach, but I can wear a corset/abdominal binder. I've been using Vedette since the fall. It helps a lot and isn't as expensive as the tights. You may want to look into it. My tummy sticks out a lot. so the binder kills too birds with one stone! I'm just curious to try the tights to see if they work differently than the hose. I did buy them and will hopefully get them in the mail this week! Will report back!

I paid $90 for the ones I ordered. You can get them cheaper on ebay, but they didn't have them in my size, plus I wanted to be able to return if the first pair doesn't fit. It is pricey. but I m curious to see if there is any benefit over compression hose. Being more comfortable and able to sleep in them is key, I think, since so many of us have morning issues. I will post an update after I get them.

Yes!

I read on another forum that some people with POTS have had really good (miraculous) results wearing recovery compression tights. I was wondering whether anyone here has tried them? Supposedly they are high compression and much more comfy than compression hose. You can also wear them when you sleep. The tights recommended were Zoot Recovery tights. They are as expensive as compression hose, and seem to be the highest compression, plus have some funky technology which is supposed to help your muscle soreness after running. They are not cheap. There are actually lots of other brands and types of running tights, and none of my local stores had these particular ones in stock. It is very confusing I just ordered a pair online and can't wait to see if they work. I am not expecting a miracle, but every little bit helps. Has anyone else tried them? By the way, I wear compression hose sometimes, and it helps. But I am hoping these are better/more comfortable. http://www.amazon.com/Zoot-Compressrx-Ultra-Recovery-Tight/dp/B001HBXTW2/ref=sr_1_1?ie=UTF8&qid=1362154716&sr=8-1&keywords=zoot+recovery+tights

Not sure what's most accurate, but does the daughter feel warm to the touch? I would think the mom (if healthy) could detect such a 103 fever just by feeling her forehead. Also is she experiencing other symptoms chills, sweating, etc.?

Your daughter is still pretty young. I am not sure kids at that age understand what their parents do. I recently got forwarded an email from my niece's preschool class where the quotes from the kids about what their parents did were all like "My mom eats lunch at work". Hopefully you will be better by the time she gets a little older and starts to understand. If not, there are lots of parents out of work these days due to the economy, or sick, not to mention kids with "different" parents or families for various reasons: adoption, divorce, etc. I have a friend whose husband didn't work for most of the daughter's childhood due to a psychiatric condition; the daughter has grown up normal and well adjusted. I think your daughter is lucky to be with you all the time - a lot of kids these days don't have that and that's what they need most.

I agree with Katybug. Also taying in bed could make it worse. In fact, being in bed or a long time can cause POTS, for example, in elderly people, people recovering from surgery, etc. though that kind of POTS usually goes away quickly after practicing being upright again,

I think most end's don't know about POTS/dysautonomia, so he wouldn't know what to make of the info. I think he was trying to getl you to go somewhere else more specialized. At least he admitted he didn't know and didn't tell you you are healthy/it's all in your head as many docs do. It is good that you don't have pheo (and most peopel don't). I know it's hard to sort all of this out. Hang in there!

I don't think you have backtracked. It is common to have ups and downs in symptoms which sometimes last for weeks, I think we all have our own way of healing from a flare up. But I tend to agree with your dr. Listen to your body, you will heal faster. You can take a break from exercise if you're in a flare. It is all about the big picture. Missing for a few days of exercise should not make that much of a difference. I think fluids and rest are a big help. Feel better soon

So happy for you! Good planning. I am sure having one event under your belt will make the rest easier.

What about caffeine?

By the way, along with alcohol I didn't have any caffeine for a year or 2 with POTS, but was able to reincorporate them.

I too can do squats now. I couldn't do them when I was healthy, though I did lots of cardio. I can do them now from yoga - and go up and dowm somewhat quickly. I must have built up the strength/tolerance over time. I do feel tired/lightheaded sometimes, but that doesn't last. Once upon a time one squat would put me in bed for a weekend. I don't do them with weights, though! I am proud of myself just for doing them with my own body, but doing them with weights is amazing. I am impressed!

Yes, many people can drink. I couldn't (or didn't want to for the first year or so), but then I started. For a long time I defintely felt it the day after, but was still worth it. I'd try a few sips of wine at first and then work your way up.

If there is just one person that believes you and can help you out, I think that would make a difference...or maybe hire someone if you need.

It will be exhausting, but I think you will survive. I had to attend my sister's wedding at my worst and I survived. At that time I couldn't be on my feet at all and didn't socialize. I stayed seated most of the time. Many people knew I was sick. Don't put pressure on yourself to look good, socialize, etc. Make people bring you water. Just stay seated, smile and you will make it.

not sure about mast cell, but POTS in and of itself seems to run in families.

ugh! I would file a complaint with the hospital regarding the dr's behavior.