britishangel6

Does anyone else get periodic rashes? It usually appears after I shower, go outside (Florida heat), or exercise. They don't hurt or itch; just small, flat, discrete red or purple circles covering my chest, abdomen, or extremities. The rashes last anywhere from 30 minutes to a couple hours. Other times (usually after I shower) I get a flat, blotchy, pink/red rash along my cheekbones (similar to the placement of lupus butterfly rashes) and my face will feel very hot. With all the symptoms related to POTS I didn't know it this was another one and if it is, how POTS could explain it?

I would love to work on my good days but the most difficult thing for me is that things change from hour to hour and i never know until the day that that day is good (if that makes sense-lol).Wish there was something i could do from home.

I worked in telephone triage for 3 years and would love to be able to do that from home but dont think its a possibility.x

I'm with you there, not know even hour-to-hour how I'll be. It drives me crazy not being able to predict my "health".

I believe you said you've been made redundant due to your health? I'm looking at telephone triage now. It's ashame that you can't continue that.

For those of you who can work...what do you do? I'm an RN but can't work in the hospital (or on my feet) any more. I'm also avoiding driving so home health isn't an option. What field is everyone working in???

Alcohol does dehydrate and it relaxes the nervous system, so to speak. So yes, it allows the vessels to increase dilation as well as decrease pulse and blood pressure.

When I first got diagnosed I proudly told them I drank a lot of water and was told to change to a sports drink for the sodium and other electrolytes. I've seen other doctors (cardiologists and neurologists) who all told me to make sure I drink sports drinks in addition to a high sodium diet (currently, I even add salt to the sports drink). I am on florinef thought, which won't work if I don't take in a lot of salt (along with fluids).

I originally thought that if I took a lot of salt I could drink water but the doctors seem to like the sports drinks. If you want to avoid the increased calories there's Powerade Zero but you can't really buy it in bulk. Hope this helps.

Brittanie

I only gained 2-3 pounds water weight (on 0.1mg twice a day) and no increase in appetite. I noticed improvement about a week and half in.

First I'm sorry if I repeat what someone else said, I didn't read every response in full. In regards to getting answers for a dysautonomia, Vanderbilt in Nashville would be closer than Minn. I don't know if they see pediatrics but they have an autonomic dysfunction clinic. I found them helpful for my POTS but MCAD/MCAS is admittedly more complicated. Can't her allergist test for it? Or a local immunologist? Even if Vandy can't see her the clinic may be able to recommend a pediatric specialist to see her. I hate to hear you've had such trouble and have to pay out of pocket but spending that money to help her will certainly be worth it. Let us know how she's doing.

Multiple doctors told me to add salt for years and it didn't help, but this was prior to diagnosis. When I finally got someone to listen I began florinef. The florinef helps me. When I wasn't on it my heart rate was much higher and symptoms much worse! To tell the truth, when I first started it I noticed a difference. After a while I assumed it was helping but was still so miserable that I wasn't sure. THEN, I had to stop it for a while and let me tell you: it made me appreciate it all over again!

Florinef enables your body to retain more sodium (salt) than it can on its own. With the retained sodium is retained water (in the body, where salt goes, water goes). This means that on florinef your body's total fluid volume increases, which should decrease symptoms and help your body maintain blood pressure with less of a heart rate increase. Being a POTS patient, that's where my knowledge lies and to that, about 50% of POTS patients are hypovolemic (low blood volume) so an increase in volume (even if not blood itself) can help. Myself, I am not considered hypovolemic POTS but as I said before, still appreciate an improvement.

Realize though, that all the fluid retained won't be in the vascular system but outside as well. Usually, this just means some puffiness and swelling, mainly in the legs, feet, and ankles. The swelling can be minimized by compression stockings and the amount of fluid retention monitored by keeping an eye on your weight. Now florinef is a steroid (glucocorticosteroid)so if you're diabetic or border-line, you need to keep an eye on blood sugar. There are other side effects, of course, more so if you have other health problems, but these are the emain ones that the doctors and my own research uncovered. I hope I didn't confuse you with too much medical jargon and if so just msg me with any questions.

As to the dryness I don't have much to say. My skin and lips are really dry too and cottonmouth isn't rare either.

When I spoke with a specialist at Vandy about recovery he didn't give numbers but stated many get to the point that they no longer require medication...while I don't consider that recovery if there are symptoms it's still encouraging.

I just wanted to add, in case you hadn't heard: I was recently at Vanderbilt seeing specialists. During a conversation he stated that the POTS patients that tend to recover the best and quickest are POTS patients who begin with symptoms as teenagers. While it doesn't help the pain is causes I hope it can give you some hope for her future.

I don't have a child with POTS but as a POTS patient I can say that the symptoms are really debilitating, which you already acknowledged. The inability to feel good, get out and do things, and as a teen fit in and feel "normal" can be quite depressing so I'd be aware of that as well. Having worked with sick kids I can say that getting them to take pills can be hard. Try to find out why she doesn't want her medicine; does she think other kids don't take meds? do they have weird side effects? Does she think they don't help? Do the pills dissolve and taste bad? Giving teens power over themselves is important and empowering but even parents with kids who always take their meds, ect need to look over their shoulder so to speak, showing them you are still concerned/caring for them and at the same time ensuring they get what they need.

What were her hobbies before all this? Anything that can be adjusted to a seated/lying position. Would she have enough energy to talk to a friend while she sits on the couch if you or someone else brought the friend to the house? Speaking of which, does she still attend school? That alone could be draining all her energy. Hope something helps.

Thanks everyone for the tips. A lot of these I've tried, actually cook my rice separate from my husband's now since I use broth and salt. I know I'm adding enough, at times too much to food, as it burns my tongue! I've been adding salt to sports drinks but it sounds like I need to be more aggressive about it.

I'm having trouble getting all the sodium my doctor wants me to eat in my food. He wants 8-10 grams a day in dietary sodium and to avoid tablets. I'm already liberally adding salt to foods and eating broth. If I ate all processed food I might be ok but I try to eat healthy and fruits/veg usually don't have much salt (except canned veg). Any suggestions greatly appreciated!