yogini

How about sending them a polite email that you won't be able to watch their animals anymore, at least until your health stabilizes? or that you will need more notice in the future so that you can consider whether it is something you can take on? Rather than spending so much effort on others that don't reciprocate or appreciate, you could rest or do something to improve your health or do something for someone who DOES appreciate. These people don't sound like they deserve you!

By the way, most soy sauce has gluten in it....and rice is a carb and carbs usually don't help POTS much, Despite the carbs I find i feel much better. That's why I think it's the sodium in the soy sauce. One tbsp of regular soy sauce can have 900mg of sodium, which is an obscene amount.

I agree with the protein, but sushi seems to have more benefits for me than eating grilled fish. Assuming you eat it with soy sauce you are getting tons of sodium. I've found that this is a much better way of keeping up my BP than Gatorade.

I am a big supporter of meds as they enabled me to get better, so I was not suggesting she should not take them or reduce them. Just pointing out that you may want to look into the side effects of what she is taking to see if they could be contributing to her symptoms.

It is certainly possible to feel very sick with POTS and have your vitals (both HR and BP) normal. My doctors didn't realize this and when I first got POTS I spent months searching for other things that could be causing my symptoms. I am sure now for me it was "just" POTS; that doesn't mean that's the case for your daughter and you should keep searching for answers if you think something else is going on. I would also look at the side effects of the meds she is taking. Meds can cause a whole host of symptoms on their own.

The symptoms you describe could be symptoms of POTS so I would not assume respiratory failure unless a doctor discussed this with you. Although it may be listed on the site I don' think it is very common (not to say you do or don't have it, only a dr can tell). If you are having respiratory problems you may also want to see a pulmonologist.

how is her heart rate if BP is normal?

I think you can have low/lower BP with hyperpots, but one of the key symptoms is a large increase of BP upon standing. Many dysautonomia patients (like me!) tend to have orthostatic hyoptension - meaning your BP drops upon standing, but hyperpots is characterized by orthostatic hypertension, meaning an increase. See this description from a Dr. Grubb article. It is interesting to me that this is a less common form of POTS. So many people on the forum talk about hyperPOTS that I assumed it was more common! The second (and less common) form of primary POTS is referred to as the "hyperadrenergic" form. These patients tend to report a gradual and progressive onset of symptoms as opposed to an abrupt onset. Hyperadrenergic POTS patients report significant tremor, anxiety, and cold sweaty extremities when upright. Many will report a significant increase in urinary output after being upright for even a short period of time, and over half suffer from true migraine headaches. The hallmark of this form of POTS is that in addition to orthostatic tachycardia they will often display orthostatic hypertension, as well as exaggerated response to isoproterenol infusions. As opposed to the PD POTS patients, the hyperadrenergic patients have significantly elevated serum catecholamine levels with serum norepinephrine levels >600 ng/mL. There is often a family history of this disorder. Currently, hyperadrenergic POTS is felt to be a genetic disorder, in which a single point mutation produces a dysfunction of the re uptake transporter protein that clears norepinephrine from the intrasynaptic cleft. This in turn leads to excessive degree of norepinephrine serum spillover in response to a variety of sympathetic stimuli thereby producing a "hyperadrenergic" state that appears similar to a pheochromocytoma.

I thought one of the key symptoms of hyper POTS was an increase in BP upon standing. If this is the case, it doesn't sound like you have hyper POTS. I would ask your dr why he/she thinks you have it. Apart from a handful of POTS specialists in the country, I think most doctors get confused about the terminology.

I wish they would leave all of the unnecessary ingredients out too. They scare me. I haven't had any reactions and wasn't focused on this point at all until I saw the dye free meds and wondered about the dye. Yuck.

I noticed that my drugstore carries dye-free Benedryl and Advil, which are more expensive than the regular version. I am not sure why manufacturers include unnecessary ingredients like dyes in our medications. Is there any danger in the dye that make it worth paying extra for? I tried googling this and couldn't find any info.

You may have anxieties on top of your POTS. POTS patients can get out of breath while talking. Have you tried lying down while on the phone?

I realized that ice has the added benefit of increasing my BP, esp when it is on my neck. I am definitely using it more often from now on.

I've used a heat pack all of these years on my neck and shoulders. I've been using an ice pack this week because I had my wisdom tooth out and put it on my neck. It actually feels great. I never thought of using ice before because I hate the cold. Heat is great for my pain but I think ice actually feels better...

Yes, I think many of us have a hard time processing stimulation of any kind - noises, lights or anything that causes phyiscial or emotional stress.

Hope, I think you are right that it is very personal Glad you found one that works so well for you.

I have heard the same thing about buying refrigerated probiotics. I ordered the CVS brand online. They were half off plus I had a 30% coupon. I have heard that generic meds are the same (usually from the same processing plant) as brand name. I suspect this would be the case even for something like probiotics...but realize probiotics may be easier to screw up than a plain old drug like aspirin which is just a chemical compound. Hopefully I won't regret this decision, lol!

Was thinking of restarting probiotics after a friend recently had a good experience. Was wondering whether any of you have tried a generic brand like CVS? Does anyone know whether these work as well as the brand named ones like Culturelle, etc?

If you read through old posts here, people seem to have good luck with Omron BP monitors. You can also read reviews online at places like amazon.com and they are not too expensive. I think a BP monitor is very useful to have for people with POTS. I used to take my BP every morning and night and write it down.

Going up stairs is a form of exercise, one of the hardest forms. Exercise intolerance is very common with dysautonomia.

Stairs are a challenging form of cardio. Upright exercise makes POTS worse. I think it is important to do some stairs so you don't lose practice. I have gotten better with time. That being said I usually take the elevator or escalator whenever I can. There are many other ways to build leg muscles that are more POTS friendly!

Organic chicken broth for me

I always go for the other less powerful option (I think it's lidocane) and my dentist is happy to use whatever I feel comfortable with. Even though it may be passing, it's not worth the risk/added stress for me.

I'd try to find someone in your area that's on the Dinet doctor list, and ask around if others here have seen that dr. The key is finding someone that is experienced in treating POTS.

There may be some people on the forum that have this issue, but it does not sound like a typical dysautonomia symptom. "Heat intolerance" to me means having trouble going outside in the summer heat, and that is when people wear cooling vests. There usually isn't a problem indoors. I would definitely push for further testing to figure this out. Do you have any other symptoms besides just feeling warm? What are your body temperature, HR and BP when you are waking up? When I feel warm, it is usually due to tachycardia.