The dr. told me that I need to drink a lot of water and electrolyte's drink. I have been, drinking gatorade 2, but I hate to be using something that has so much of the food coloring and sugar?
Does anyone take any other kind? Is there a recipe so that I can make my own at home?
I am a FIRM believer in "Smart Water" recommended by both the Cardio and the
Electro doc. It has Electrolytes in it but taste just like Dasani, or any other bottled water! Pedialyte has a parculiar taste or feel in my mouth ot something...even the flavorless.
I also drink the old Gatorade! Usually one a day! Now they have the Gatorade H2O I think its called w/ less sugar and stuff but same great benifits :) Adding both Electolytes as well as the Sodium.
I think they still have artificial stuff, but some people really like nuun:
I prefer Powerade Zero to Gatorade G2, because where the later has half the sugar, Powerade Zero is sugar free (it's sweetened with artificial sweetener ... the same stuff as Splenda). But it still has artificial stuff too. (I don't like the taste of water, so that's actually a selling point with me, LOL.)
Kroger grocery store chain has a line of store-brand drink mixes similar to Crystal Light which includes a smaller line of sports drink powdered mixes (with electrolytes etc. similar to gatorade) that are sugar free and dye free. They have artificial flavoring and artificial sweetener, though. (I think it's likely the type that's in Equal--aspartame, but don't quote me on that.) These may also be at the other stores nationwide owned by the same company as Kroger, which include Fred Meyer, Ralphs, King Soopers, City Market, Dillons, Gerbes, Owen's, Fred Meyer, QFC, Fry's and Food 4 Less. I've never been to any of those, as it's Kroger that we have here in Ohio, but it wouldn't hurt to ask. One benefit of those and the nuun is less packaging waste.
Your main electrolyte in most of these is, of course, none other than sodium. You can also get a boost by adding salt to fruit juice, which masks the taste surprisingly well. (I even water my juice down.) Smoothies can hide salt also; bananas, oranges, and kiwi all have significant levels of potassium, another important electrolyte.
Another issue I have encountered with these electrolyte recipes (very useful btw) is that I find they are amazing, but the salt content seems too low and you'd have to drink a lot of litres to get to 6g+ of salt a day depending on condition type.
Have PAF, felt rubbish today despite meds - made a nice pick me up (first time ever of):-
2 tbsp soy sauce
1 tbsp lemon juice
125ml orange juice (not concentrate)
10ml liquorice herbal extract (has the same effect as Florinef)
It looks brown and not hugely appetising, but it tastes mainly of salty oranges, but it does work.
Also I'd advise you to be careful with the liquorice too if you are on other meds that may conflict.
Yes, a note to everyone that licorice affects blood pressure and that despite it being OTC, if you intend to use licorice as part of your treatment you should discuss it with your doctor first to sort out possible drug interactions and appropriate dosages, etc. It is likely helpful to bring the original packaging of the product you intend to use with you to your doctor appointment, as different products may vary. You may also want to discuss this with your pharmacist, in addition to talking to your doctor(s).
I can vouch for the fact that fruit juice helps mask the taste of salt a bit if you need to get in a saltier beverage ... this is a strategy I've used before (though I've never used soy sauce in my juice, just salt and water mixed in). I *have* done "shots" of soy sauce in a pinch before when I **really** needed salt in a hurry, but it tastes blech, and you definitely need a "chaser" of something that tastes palatable, LOL. I wouldn't recommend it particularly, but it will give a short-term quick boost if you're desperate for salt. I guess its probably not that different from salt tablets, hahaha.
You have so much knowledge, what do you think about soy and its hormones? I try to avoid it but if a shot of Soy sauce can be a desperately needed boost I am willing to toss everything else out the window.
Actually have you come across anything in your "travels" through research about POTS and hormones?
I'm not Heiferly, but I believe soy has an estrogen like effect on the body. If you have endometriosis, I recommend avoiding it. Also, if you have interstitial cystitis, like me, soy sauce is on the do not use list- I got a print up from a doctor's office from an IC organization that mentions it. I have to avoid citrus too.
POTS- one of the criteria listed by a doctor w/Vanderbilt is a standing norepinephrine of over 600. Norepinephrine is a hormone and neurotransmitter, so it definitely can have an affect on that one!
Sorry in advance for any typos ... trying to do this with an eye patch to work around the vision thingy (see my bad week thread on our forum if that doesn't make sense).
The dietitian who taught a few of our classes in cardiac rehab answered a couple of questions about soy for me, so I'll relay that information on to you. Concerns about soy's estrogen-like properties are really only problematic if you're eating a LOT of soy (might be a problem for vegetarians/vegans who rely very heavily on processed soy-containing products for various aspects of their diet, such that soy is found in every meal in some form or another or maybe even multiple forms) or if you're using soy supplements (like powders, pills, etc.). If you have occasional intake of soy, it should not be problematic at all. (Soy sauce contains MSG and is a separate issue for many people; some people get headaches from MSG so if you're one of those people, stay away from soy sauce. I personally have no problem with MSG whatsoever.) These links may help explain a little more:
Surgimenopause mentioned an exception for a specific health condition, so obviously if your doctor has told you otherwise, listen to your doctor.
With regard to POTS and hormones, it is well documented that many women have a worsening of POTS symptoms in correlation with their monthly cycles, which likely is tied to fluctuating hormone levels (in addition to blood loss and the effect on fluid balance and iron levels). This is why women with POTS may work with their GYN or other doctor to find an option to completely stop their periods or reduce the frequency. This article is not specifically about POTS but does speak to the autonomic nervous system and the effect of the various phases of the menstrual cycle on the ANS under heat and orthostatic stress, so it's pretty relevant:
I hope that helps answer your questions. (As SurgiMenopause said, norepinephrine levels are also typically high in POTS patients, especially standing NE levels. The sympathetic nervous system's nerves dump NE into the heart ("norepinephrine spillover") which stimulates an increase in heart rate, as I understand it (you know, I'm not a doctor, I only read their reading materials and try to parrot them back on the internet, haha), and this is what causes the high serum (blood) NE levels to be found in POTSies (more NE spillover correlated to more tachycardia, if I'm understanding correctly).)
Reading back over that, I'm not sure I was very clear about the norepinephrine and the relevance of it coming from the nerves and "spilling over" into the circulatory system. This is the distinction between a hormone and a neurotransmitter. A hormone is released from a remote location in the body relative to the site of the target cells in which it will trigger a response, and travels to those target cells through the bloodstream. A neurotransmitter is released directly from a nerve cell into the tiny space between it and the target cell, rather than traveling remotely through the body. In this way, the nervous system can send a message to just one localized site in the body whereas hormone messages are more global because the blood is circulating throughout the body.
Nonetheless, neurotransmitters may still be found (and quantified) in the blood through blood testing because they may have this "spillover" into the circulatory system. Somewhat complicating things is the phenomenon of reuptake of neurotransmitters, whereby the cells reabsorb the neurotransmitter that has been sent out to transmit its message to "recycle" it for use again. This may be a familiar concept for those who have heard of or studied NET (norepinephrine transporter) deficiency in relation to POTS. You may also have heard of SSRIs or selective serotonin *reuptake* inhibitors.
The take-home lesson here (after all my ramblings, sorry) is that neurotransmitters act locally from the nerves to the target cells and hormones act remotely from the gland to the target cells. Hormones include all the fun stuff from your thyroid, the aforementioned fluid regulating stuff (renin, etc.), sex hormones such as estrogen and testosterone, growth hormones, etc. Neurotransmitters include epinephrine, norepinephrine (that's adrenaline and noradrenaline for those of you on the other side of the pond), dopamine, serotonin, etc. Dysautonomia in its various forms has been associated with wonkiness in activity of certain hormones AND certain neurotransmitters.
Regarding electrolytes, my doctor at the Mayo Clinic (Dr. Fealey) suggested a powdered product called Ceralyte that you can purchase online. It comes in a variety of strengths (related to sodium content) and is available in a no-sugar, colorant etc. formula. It is great to have with you when you travel and don't have easy access to V8 etc.
According to what I had looked up online, norepinephrine is both hormone and neurotransmitter. It comes from the adrenal glands, part of the endocrine system. Of course, Kav, who got me started on that vein, likely was only referring to reproductive hormones and their relationship to POTS. :0)
Regarding the electrolytes- why do docs recommend electrolytes plural for POTS, when it seems salt is what they really mean?
I am new to autonomic dysfunction issues so I'm not sure about the nuances of electrolyte balancing, but coconut water is great and totally natural. You could look up coconut water nutritional benefits to see if it has the balances you would need. I drink the brands ONE or VitaCoco daily, but there are others too.
As far as soy, I had to cut it out completely several years ago. Even the smallest amount messes with my hormones, and it is always crystal clear (at that time of the month) if something soy was in my diet during the month. I don't know what POTS stands for....
Interesting overview discussion on the hormones and neurotransmitters - thanks.
Thank everyone! I am interested in the NE angle too.
I don't know how ya'll keep all this information in your head or know where to find it elsewhere. I have gone to have excellent recall, language skills, putting together complete ideas that make sense, to not being able to get out a sentence. I hope its still my brain fixing what a medication I was on for several months caused.
I have adrenal issues due to too much steroid use for something I found out I did not even NEED. I could scream at the doctors here in FL but am grateful I made it to Mayo and had such extensive testing day after day so I knew to stop it NOW and give my addrenal glands the ability to wake up.
Period issues below.....
That brings up the other things mentioned about our period causing things to get worse with POTS. Before I "got" sick I was already having serious period issues, I stopped having a period but started having all the PMS symptoms in overdrive, now that I have been to the Mayo and know my adrenals are not working like they should means my body is not making the right chemicals to form the lining we get rid of during our period before we started to think I was having early menopause so I stopped using bio identical progesterone cream to get accurate readings and I was back to my severe migraines and cramping for days but no period.
Once I started having POTS symptoms I kept telling the doctors I was so much worse right before and during when I should have my period they blew me off once poly cystic ovarian syndrome was ruled out after in my 20's having serious cysts and a laperscopy to remove them and they also found a small spots or two of endometriosis.
I want to take birth control but have tired several that I was on when I was in my 20's to only get sick as a dog, even the non-estrogen one.
I have no clue what to do. The good news is I am starting to spot, I never in a million ideas thought I would be happy about that but having PMS for two weeks and the two day migraine when it should be starting really made me mad.
"Thus, under usual conditions, the biologic actions of norepinephrine can be attributed only to its sympathetic neurotransmitter function. Plasma norepinephrine concentrations do at times exceed 1,800 pg/ml during exercise and during major acute illness. Thus, under conditions of stress, norepinephrine may subserve a hormonal, as well as a neurotransmitter, function. "
I read medical textbooks and medical journal articles mostly. As for retaining it, the part of my memory that was affected by my worst head injury to date is mainly auditory memory/short term memory. Things that I read "stick" way better than things I hear, and like most people I have better retention for subject matter that I enjoy. Fortunately, I'm a lifelong nerd and have been reading textbooks "for funsies" all my life, so it's not tedious to me. :-p
I wish I could think of some good advice about what you might try to resolve your menstrual issues, but it does sound complicated. Is your GYN up-to-speed on POTS stuff or trying to read up on it? Mine has been really good about taking my dysauto into consideration, and it has helped immensely! If your GYN reads up on the POTS stuff a bit, it may help him/her individualize your care better to your unique needs.
Your adrenals are only part of the picture as far as your female hormones and menses go, if you still have your ovaries. Did they do any pituitary hormone (such as prolactin, FSH & LH & TSH) as well as other thyroid function testing , not limiting diagnostic testing to adrenals only, as a pituitary problem or thyroid not functioning right can also affect menses.?
I do have my ovaries.
They ran prolactin, and I am sure all of the ___SHes, I also had a cortisol challenge test which did bring my cortisol up to normal other then that the three other cortisol tests were too low (almost non existent) , 24 hour urine catch.
I had four visits at the Main Mayo with a endocrinologist. I was sent to see him after I did not have what they wanted to see in the 24 hour urine.
I also have started growing hair in places I don't want it, my stick straight hair now has a wave in the middle of the back which I was told was caused by hormones.
My skin is breaking out like I am 15.
And as I complained long and loud about I have so many PMS symptoms and no actual menses, well that is fixing itself but only slightly and even that is not normal.
Heiferly- As far as my Gyno. understanding POTS. I don't know I have not seen him since I came back from the Mayo in April. I was not sure he could do much.
He did mention he did want me to have a period after I had a diagnosis and that he could create one using birth control pills but I have been trying to just let some of my chemistry work itself out after being very over-medicated for way too long.
i drink pedialyte and find that it does pretty well. If you went with the flavored I strongly suggest the grape 1L or cherry singles. There's a $1.50 coupon available online when you sign up for their newsletter
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