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Im going to spend part of this weekend experimenting with the various ingredients mentioned here, and find the right combination for electrolytes, magnesium, potassium, salt. I want to be able to create a gallon off the stuff at a time to last 2-3 days, without all the sugar. A friend of mine who is asian says you can buy stuff at this asian store. I'll just down a glass of it AM, and then keep sipping on it. The only problem is ive gained more water weight because im mega-hydrating the past month but hopefully this low carb/gluten eating will counter act that.

to the above, your son may do much better in the pool. Ive had miraculous workouts in the pool when ive had trouble walking otherwise. There are several posts in the arhives here about that.

You cant go wrong at cleveland clinic or vanderbilt, if you can afford/insurance etc. For some people it an awfully long way, and theres a waiting list. Yes, i get shake from my wrists up. I also get entire body cramps on either side that threaten to almost clamp me down. Its perplexing because im so hydrated. In my tennis days those happened during tournaments when you'd play several matches in a weekend in high heat.

this may not help, but have you been tested for either sleep apnea or night terrors or night panic attacks? Im on cpap, breathing machine, but when i get major leaks or sleep on my back (a no no with apnea) i get really nasty nightmares every time, snoring, and then wake up feeling like frankenstein with heavy pulse. I dont recall sweating but ive got lots of other symptoms.

yes, ive had a few minor digestive issues, but the gluten free seems to be counteracting them. thanks for the recipe---actually in doing some research last night I discoverd that coconut oil is LOADED with electrolytes so i might add some to that recipe and see what happens. I want the gatorade benefits, but i dont want the sugar.

hi, i have a very similar story to yours. About once a month Im "testing" to see if i can push myself further physically, so dont beat yourself up over trying to make progress. Thats a normal thing and it shows youre fighting. Not to give advice, but there are physicians recommended here. This is not a disease/syndrome to be treated by a general doctor. It HAS to be specialized. Most of us on here have traveled extensively in search of diagnosis, some across country. Its normal that they want all your records, that shows that theyre researching your symptoms. If you can afford it insurance wise, mayo and cleveland clinic and vanderbilt are "hot spots" for POTS diagnosis. Good luck, and PM me if i can be of any encouragement, ive been down the path for 2 years.

I can only speak for myself obviously, but using two pillows significantly helps. It is not always comfortable but i feel better the next day. Tilting the bed is my next thing to try. As always with this crazy syndrome, everything is trial and error and individualized.

This is where a medical diagnosis helps. Show them that you CANT do certain things, and stick to it. Your health is most important. We Pots people know our stress limits and to go beyond them is inviting trouble and flares.

it coudl have been a sugar boost, but this last for a solid 8 hours, which is unheard of for me. So i think it was the electrolytes or something, along with the sodium. I really want to learn how to make my own batch of stuff to drink by the gallonn.

ive eliminated coffee, dairy, MSG, processed foods, gluten, so far. I just do it trial and error, if it bothers me after eating, i get rid of it. Unfortunatley i hav a sweet tooth so im bound to fall for the banana split once in a while.

Ive stopped telling doctors i have breathing problems. Non POTS doctors think youre talking about anxiety every time. I describe it as "feeling like im having to work to hard to breathe" I had trouble choosing one category as the trigger----big meal, flares, sleep apnea, MSG/cafffeine,/chemicals, being overly tired, blood pooling, bad drug combinations, a little too much benzo, allergies,heat, excercise intolerance, lifting heavy objects ..........all cause problems. Im very careful.

My symptoms have been really bad the last month so Im gonna try sixty days without gluten and see what happens. Im two days without gluten and have definitely felt slightly better. I was doing the salt water hydration, but just happened to buy a couple gatorades the other day around lunch before I'd eaten anything, and I felt WAY better within an hour. I didnt take my usual klonopin until late that night. Im wondering if anyone knows-- --does the gatorade work better on an empty stomach? --can you make homemade gatorade without the added sugar/carbs, and where do you get the ingredients to mix? -Which type of pots would most benefit from the no gluten diet and why? --how long does it take to get maximum results from a no gluten diet? So far im two days into this, im still crashing after about 7 hours of very light activity/work but before then it seems like it was 4 hours if lucky. I'll take any improvement i can get. Thanks for any information.

Excercise. Even when im feeling lousy, if i start to do a walk and persevere, i usually get a rush of endorphins and just generally feel better for a few hours afterwards. If I can get into a cool pool in the summertime, for that hour i feel like i dont have POTS anymore.

Im not knowledgeable to comment much, but i know that i used to tell people i had trouble singing at church, took too much effort and wind beyond one verse. Later I learned singing problems are common in pots. Probably some combination of a hypersensitive CNS, elevating BP, a slight adrenaline etc push, Or perhaps blood vessels are microscopically constricting with the effort for a POTS patient, setting off an "event" that is manifesting itself as exhaustion later when your system goes back to normal. This reminds me of Migraines. My wife has migraines lifelong, which has similarities to POTS. She has certain triggers that dont make sense to me, but apparently your conversations are stimulating your CNS and you are crashing afterwards. Are these conversations on serious topics or just light exchanges? Or perhaps you could examine the issue of social anxiety. There may be something going on underneath, a stressor, that youre not aware of. There may be a mental component beyond the physiological?

I know from long experience that im beyond hypersensitive to caffeine,alcohol, dairy, coffee, MSG, aspartame, food additives, various molds, and probably high fructose corn syrup, and probably to a certain extent gluten. Ive elminated most of that, the hardest is obviously JUNK FOOD CARBS and SWEETS. Theyre loaded with greasy sugary excitotoxins to varying degrees. Histamine and adrenaline, correct me if im wrong, are considered excitotoxins----virtually anything your body decides to attack or cannot digest without major problems or pooling. Today, i read an old post that lemons are LOADED with fecal matter--bacteria that can cause parasitic h pylori long term problems. Probably most people have it in their stomach----where it hides,---but only certain people get very ill with it. As was said before, where the interesection of automatic nervous, immune, endocrine, neurologic, cardiac, and gastro systems occurs, its a giant jigsaw puzzle trying to figure out what is causing what. If theres anything "good" about POTS its that we can treat symptoms through trial and error and see what works. There is even a diet catered to not eating anything with molds coming from the earth and into your food. Thousands have said that helped them. The role of leaky gut syndrome as a trigger for all this has got to be really under rated.

yeah, I dont think i'll ever get used to waking up and trying to ascertain what kind of day it will be just because i have a syndrome. To those that are healthy, its not something they can comprehend. I also enjoy the little things in life, but i think my favorite is that evening walk/swim where i forget everything. If I feel too weak or dizzy to do my 1 hour slow walk, its VERY depressing because it makes me feel like im going backward. Ive learned to cheat and bring a bicycle along, and always walk uphill, so that if i get in trouble i can coast back. Sometimes when i get out there and get the blood going i get my second wind and everything works out. About every tenth time out i just cant do it, and have to head back, those are the worst days.

i say i have a somewhat rare neurological disease

I never have any symptoms of either pain or classic fatigue--instead i call it weakness. It seems like theres a difference.

The sad fact is unless you have some known disabling disease few people believe or care that youre sick. Its pretty depressing but thats life. But thats why wer'e all here. We all know what its like. We need others who know.

I hope this isnt a dumb response, but have you considered using a juicer/blender more frequently? I discovered awhile ago that sometimes drinking a meal is easier when eating boring/bland foods. I make a variety of smoothies, but you can literally blend anything together. My favorites are black bean/turnip greens (believe it or not), carrot/pineapple, strawberry/banana. You can mix wheat germ/oats, etc into any of them. I wonder if it might be more easily and quickly digested? Worth a try? Especially if youre dealing with bland foods--easier to drink down than sit there for a half hour trying to eat.

Yes, Id agree with that, I may be in acceptance, but if I wake up and can tell its going to be one of those nasty days and i cant do anything about it, its FRUSTRATION. Theres the feeling of having to endure the symptoms, but then theres the feeling of wasting time and being unproductive. Its almost like "ok, i get it, Ive got a disease that isnt going away, but does it have to wipe out entire days that i'll never get back"??

i can relate to that, just before I was diagnosed as negative for MS, i'd say "i hope its positive".......just to have an explanation for being so healthy then suddenly had trouble moving and breathing. And I knew others with MS who were managing it. That non-diagnosis sent me into a frustrating tailspin, and I was to the next (after first heart, and then second thyroid, and then third MS): sleep apnea. This was confirmed, but i quickly learned the cpap therapy can take a solid year to pay off. Ive been on that for awhile now, and it helps my breathing and night episodes but Im still weak obviously, and have all the rest of the POTS problems. I guess all that prepared me for coming to acceptance. But Im sure I'll go right back into the other stages if it get worse suddenly or if I get weaker and less functional. I dont remember going though the anger phase, but maybe im just not there yet or maybe its because im over 50. I think of myself as being 25 like most people but theres something you need to be warned about in turning 50 as all kindso of health issues can suddenly pop up right around that age.

I believe automatic central nervous system meltdown (my term for pots, lol) can be caused by any extreme stressor to your immune system, your CNS, or your vagal system. This could include a pulled tooth, root canal, infected tooth, dead tooth, surgery, super antibiotics that destroy gut flora, a major depression, a concussion, and innoculation such at tetanus etc. In my case, i can only guess but i had a crown on a tooth that came off and i let it sit that way for years. I finally had the tooth pulled and got on super antiibiotics. Around that time i also developed sleep apnea, had a tetanus shot, was diagnosed with ebv and could possibly have been exposed to parasites. WHO KNOWS? Its so hard to determine what set it off, not to mention DNA inheritances. For sure viruses and bacteria are your worst enemies--anything your immune system doesnt fight off. This probably partly explains why women suffer more than men, they have the possibility of tissue storage for the toxin more than men.

Ive found the stages of grief interesting and helpful to study when dealing with an ongoing illness that has no immediate cure. Im aware of the denial, bargaining, depression, despondency, anger, and acceptance phases. Im pretty sure im in the acceptance phase, but mainly because I realized after my cpap sleep therapy didnt solve my other issues, that i had an underlying problem and it wasnt going away miraculously. I was once told i possibly had ms or als long before this so i was prepared. If I ever get "over" POTS it will be considered like "gravy" to me, an unexpected bonus, but I think it took me a couple years to get to the acceptance stage.

a benzo like klonapin helps a lot of us become functional for longer periods, especially with movement activities. Have you tried that "as needed"? Also, a daily workout in a pool seems to help with pooling and has lasting results. I sympathyze with work issues, i can only work part time. I cannot do a high stress or heavy lifting 8 hour type job. It really limits my life, but ive reached the "acceptance" stage of the illness.