Lily

I get migraines, but I have never though of them as related to POTS.  They are triggered by weather, specifically certain frontal boundaries and storms but not all of them.  I used to have them several times per month, but I have had only 1 or 2 per year since starting Magnesium oxide (400 mg/day) and Vitamin B2 (also 400 mg/day).

I went to my primary care physician.  She agreed that a re-check after a week of careful hydrating was prudent, along with checking urine protein.  There was nothing in my urine that wasn't supposed to me there, and my creatinine and eGFR were back to where they were last year, 0.78 and 92 respectively.  So it seems that I caused a false positive by neglecting hydration.

Now that I am back from my vacation at 7,900 ft, I can post an update.  There were 6 adults and 3 kids on the trip.  Three of the adults have POTS, of which 2 also have NCS and 1 CFS.  Everyone got a headache.  Most of the adults mentioned getting winded with extertion much easier than at sea level.  I kept checking my SpO2 on my phone, and it went from 98 - 100 % at sea level to 87 - 93%.  Overall my experience was about the same as everyone else's.  The extremely low humidity removed a variable that usually makes me feel poorly (dewpoint temperatures were in the mid 40's Fahrenheit, compared to 60 - 75 at home).

Maybe some of the sheets and nightie for menopausal women will help.

I sleep hot, and what helps me stay cool and stay asleep is to wear a lightweight cotton summer sleeveless nightie, use cooling sheets and a bedspread (not a comforter and no blanket), and run the ceiling fan, and turn down the thermostat to 65 degrees (Fahrenheit).

Uh oh!  I do get migraines! Fortuanately, vitamin B2 and magnesium oxide daily prevents them.  I will definitely post updates. Thanks again!

Thank you SO VERY much!  This is exactly the kind of insider info I was hoping for.  Very helpful indeed.  It is especially good to know that the eGFR can drop that far due to dehydration.  I will pay better attention to hydration and follow up with specialists and my Primary Care doc (who I usually never have to see).

As for diet, I have read some very interesting recent research about ketogenic diets reversing kidney disease in mice.  I have been paleo/primal for 10 years now, but not ketogenic.  I have been thinking of trying it.  Maybe now is the time.  Or maybe it is good enough to come close.

For the record, I mean very low carb, lower protein, high fat.  And whole foods, not processed edible food-like substances.  And anti-inflammatory healthy fats.

Can anyone here help me understand possibilities for POTS patients?

Routine bloodwork (metabolic panel) from my ADHD doctor turned up creatinine 1.05, increased from 0.8 last year (lab reference range max is 1.0), and eGFR of 64, decreased from 91 last year. 

Labcorp sent me the lab report directly, so I have to wait for an appointment to talk to the docs about this.  Plus between the time the lab work was prescribed and when I remembered to do it, the neurologist who ordered it moved to a new practice.  He wouldn't have seen it anyway.  I made appointments with neurologist and cardiologist to discuss meds and kidneys, and I'm considering consulting my GP for a urine protein test.

I've been reading about kidneys as I wait for my doctors appointments to arrive (in 2 wks), and most of the info is about normal folks or diabetics.  I haven't found as much as I wanted to about POTS patients yet.  Maybe it is in the research journals.  But maybe you folks here can help me out.

Here are the questions that I can't find answers to yet:

1. Is there any way other than kidney disease that eGFR can decrease by 27 units in 14 months?

2. Can Florinef cause kidney problems?

3. Or not doing salt + water correctly while in Florinef?

4. Can POTS cause kidney disease?

5. What would happen if one did not have low blood volume yet took Florinef? My doc does not like to do many tests, but go from patient experiences instead.

Any help educating myself on this issue will be greatly appreciated.  Thanks for reading.

I am a sedimentologist and college professor, so I do research outside.  Many times I have to go even though it is hot and humid.  I always wear an ultraviotet-protective shirt due to my coloring, and I have found that soaking this in ice water provides relief (until it dries out).  Also, roll some ice cubes into a bandana or cotton scarf and tie it around your neck.  You can also buy shirts and scarves that keep you cooler once you start to sweat.  I tried one once, and while it did not keep me cool it did make the heat and humidity bearable.

I read elsewhere on the internet that starting with 1/4 of a tablet and increasing slowly, 1/4 of a tablet more per week, until you get to the prescribed dose would prevent weight gain.  So I did this and I did not gain any weight.  

I was told 8 - 10 g of salt plus 4+ liters of water.

I asked my doctor about this, and he said that there is nothing an ER would do differently if I had one or not, so I don't need one.

On 7/3/2018 at 6:09 PM, Delta said:

Hello!  Sorry if this sounds like a stupid question, but how does clonidine affect how much you pee - it's a med for high blood pressure, right?  Also does it affect your lightheadedness?  Thanks!!

Clonidine suppresses the sympathetic nervous system (SNS) a little.  The SNS is the "fight or flight" part, and it is why hyperandrenergic types need to pee when we stand up.  I don't think it does much for lightheadedness, but it helps with fatigue.

I take clonidine, and it definitely helps.  It is especially noticeable in that I do not have to pee every time I stand up.  Fatigue and lightheadedness require multiple interventions to decrease meaningfully.

Nevertheless, the Standard American Diet is known to have way too much omega 6 fats and not enough omega 3 fats.  Reducing consumption of omega 6 and increasing consumption of omega 3 will not hurt you that I ever heard of, and it does seem to be a dietary change about which (science-based) diet authorities all agree.  Start with eliminating industrial seed oils (soy, corn, canola, sunflower, peanut, etc. and products made with them) and use a high quality olive oil instead.  If this protocol also involves eating lots of vegetables, then that is a great idea, too.  Both these dietary changes should improve your health even if not your POTS.

Thank you both.  I shall report back after vacation.

Has anyone here vacationed at altitudes above 7,000 ft?  If so, how did your body take it? I want to know what I'm in for next month.

There are several different mechanisms that can get you to the same end result (POTS), plus other dysautonomias, so experiences will probably vary.  POTS creeped up on me gradually instead of starting suddenly.  I cannot pick out one day or event when it started.  I will occasionally have an episode like you describe, but most of the time my most disruptive symptoms are constant dragging fatigue and a low level background lightheadedness.  

Don't forget about potassium.  Florinef tends to flush out potassium, which makes you feel terrible (e.g. weakness, fatigue, palpitations, nausea).  I put it in my DIY electrolyte solution, but plenty of foods have a lot (bananas, potatoes, tomato juice). 

My apologies for replying so late.  I have not been reading this site much lately.

My recipe is from this website:  https://paleoleap.com/all-about-electrolytes/

About halfway down the page you'll find the recipe:

• Homemade Pedialyte: 8 ounces of apple juice + ¼ teaspoon regular salt + ½ teaspoon low-sodium salt* + 1 tablespoon of honey in 1 liter of water.

Pedialite helps me a lot along with florinef.   I make my own these days because it is cheaper, but it still gets the job done.

Good for you, Finalcntdwn!  I do not compete, and I have difficulty maintaining an exercise regimen (not because of POTS), but I do enjoy exercising for its own sake.  I do compound heavy lifting, cycling (mostly indoors these days, with TV and a magazine), and run/walk.  I like most outdoor sports, but I do not do any of them on a regular basis.  It seems to me that the same get-fit strategy holds for POTSies and healthy people:  keep exercising, and keep gradually increasing your volume and/or intensity.  

Gatorade doesn't have enough salt in it to be helpful, and way too much sugar.  You might get better results with Pedialyte, or one of the recipes on this web page: 

https://paleoleap.com/all-about-electrolytes/  

I have been wondering if I might have MCAS as well as POTS and hypermobility.  What do you all think?

I have noticed flushing, fatigue, and lightheadedness, after lunches this week (and after 2 ibuprophen one day).  Not all lunches resulted in this, and I'm usually tired enough after work to not notice any after-dinner symptoms.

I had been intermittent fasting for Lent, and also trying to eat low carb (< 80 g daily) and high fat, or rather, more so than usual.  I also eat a paleo diet, and a lot of my usual foods contain or prompt the release of histamine.  

Is it possible that I accidentally reduced histamine intake, and so I noticed symptoms when I increased my carb intake (and ate too much chocolate) after Easter?  Or alternately, perhaps I accidentally overloaded on dietary histamine and caused symptoms I don't normally have?

If I have MCAS, I wonder if that would be why I have gastric reflux and random itching, and some other nuisance symptoms.  Any thoughts?

I used to have this "idiopathic postprandial syndrome" symptoms all the time (reactive hypoglycemia symptoms with normal blood glucose readings).  Idon't get these symptoms anymore, though, as long as I eat low carb (< 150 g per day), high fat, and no processed food.