ks42

I am tyramine intolerant also, though the tyramine intolerance didn't start until this past January, which is 4 years after I was diagnosed with dysautonomia. I have the full story of my illness on my profile page.

This is something I'm also interested in figuring out. It seems that everyone has different experiences with regard to what type of climate has helped them and what exacerbates symptoms. Here are some past threads you might be interested in. https://www.dinet.org/forums/topic/15246-has-anyone-actually-moved-due-to-pots/ https://www.dinet.org/forums/topic/19160-where-you-would-live/?tab=comments#comment-176093 https://www.dinet.org/forums/topic/26755-altitude-and-dysautonomianeuropathy/?tab=comments#comment-249064 https://www.dinet.org/forums/topic/29174-very-sick-since-moving/?tab=comments#comment-266194' I live in Phoenix and have for the past four years. I lived in the San Francisco bay area when I was diagnosed with POTS, and felt awful there. I improved quite a bit after moving to Phoenix, even though it was the middle of summer and I don't tolerate heat well at all. The nice thing is that our "winters" are about 75 degrees and pretty stable from October or November through April or May. And even though I'm super heat intolerant, I actually do really well in the summer here. I think it's because the barometric pressure is constantly high, it's dry, and we keep our house at the exact same temp 24/7 (70) and I'm indoors all summer. What I don't like is that we're getting more and more bad air quality / high ozone days, and the cost of living is getting too high. So we are looking to move as well. That is, IF we can find somewhere that's affordable, has an agreeable climate, and good autonomic docs (and PCPs). Which quite frankly is like hunting for a unicorn I do know I can't tolerate cold climates, even though I'm heat intolerant and do well with cold temperatures... if that even makes sense. The fluctuation from summer to winter temps is just too much for my system, and I don't do well with indoor heating, for some reason - makes me really sick, whereas A/C is fine. So I have to be in temps that are as stable / temperate as possible. Tucson is dry, really nice in winter, and while still hot, not as hot as Phoenix in summer. I feel pretty good there too. I do really well in Boise, ID and eastern OR during spring/summer/fall, but am guessing I probably couldn't tolerate the winters (though they are relatively mild, considering). But it seems that everyone's experiences regarding where they feel best are highly individual. I've heard two people say they feel best in the Portland & Seattle areas, while two others have said they felt worse there. Some people feel better in Northern California which is where I feel worse. A lot of people have mentioned San Diego and Hawaii as ideal climates. I've come across one or two people who said they felt better in FL, where obviously there are others who say they feel worse there. When I had Lyme, I felt amazing in FL - pretty much symptom-free. So I guess it all depends on the individual quite a bit too.

Four years ago, when I was first diagnosed with POTS, B1 made a huge difference in my treatment. I went to a naturopathic doctor who ran several tests for various vitamins/minerals (NutrEval and one other, forget what it was). My B1 levels came back as being nearly nonexistent on the tests she ran. However, the tests my regular PCP ran through a standard lab showed my B1 levels to be normal. Regardless, I tried a low dose B1 supplement and the first day I took it I actually got relief from the almost non-stop adrenaline surges I'd had for the past year. I slept amazingly well. I continued on a steady incline of improvement after that, although I will say that the amount of B1 I needed for maintenance was a really low dose. If I took too much, I'd actually get a worsening of symptoms, too much vasodilation, etc. Sometimes I'd even have to skip days. However, once I figured out a schedule and amount that worked, I felt much better. The naturopathic doctor I saw said it was her opinion that there is often an underlying cause for B1 deficiency - like mold exposure, which I also tested positive for - so I also treated for that, as well. Unfortunately, I went off all of my supplements late last year as I was feeling so much better, and a few months ago flared really badly. I've tried to go back on the B1, but this time it doesn't seem to be helping. Instead, it just makes me worse. It's probably time to test again and figure out whether I have vitamin deficiencies that are new or have changed.

You're very welcome! I'm going to PM you some articles. I'm sensitive to serotonin levels too. SSRIs work very well for me for certain things (and I honestly have no fear of taking them again in the future if needed). I don't get POTS or dysautonomia-like symptoms from withdrawing, but I do get some weird symptoms, like rushing/pounding in my head, brain zaps, and vertigo. So, I usually switch to a liquid so I can go down by about 1mg a week. If I get discontinuation symptoms while withdrawing, I stay on that dose until the symptoms go away, which in some cases can be weeks. It can take 6 months for me to comfortably stop the SSRI, and I'll still have some symptoms for awhile after (just less severe). If I'm on something like Celexa, I have to switch to Lexapro (which is Celexa's sister drug anyway), because that's the only one available as a liquid in the U.S. I really have to fight my doctors on it, as they always tell me withdrawing over a couple weeks to a month should be adequate, but it makes a big difference to me.

You're welcome. I'll see if I can dig up some articles that mention this for you as well. You mention you used to be symptomatic when you first stopped your Celexa. Were you symptomatic before ever taking an SSRI? The reason I ask is that it's been my experience that stopping an SSRI in and of itself, especially if you do it abruptly and don't taper it slowly, can cause dysautonomia with POTS-like features in perfectly healthy people. Including adrenaline surges and hyperadrenergic type symptoms (SSRI discontinuation syndrome). 10 years ago, one of my close friends stopped taking Celexa fairly abruptly (she had been put on it for anxiety and depression, but was otherwise healthy before). Once she stopped taking it, she developed adrenaline surges, heart rate fluctuations, all kinds of other uncomfortable neurological symptoms, and at first was diagnosed with dysautonomia/POTS. But she didn't quite fit all the criteria for diagnosis, and once her neuro realized that she had just stopped taking an SSRI, he treated her for "SSRI discontinuation syndrome" instead. She had to go back on the SSRI, actually at a higher dose than she was at previously, and then taper down REALLY SLOWLY over a couple of months. Once she stopped completely, she still had dysautonomia for about 6 months afterward, but it resolved and she never had issues again. That was 10 years ago. I know others who have developed autonomic dysfunction - temporarily - when withdrawing from SSRIs. One person took over a year to get better, one person was fine after about a month. SSRIs mess with the levels of neurotransmitters in your brain and cause your brain to rely on the meds for production of these neurotransmitters. If you withdraw the medication, your brain has to re-learn how to produce those neurotransmitters in proper amounts again, which can take some time. Obviously this doesn't apply to you if you had POTS-like or other neurological symptoms before ever taking an SSRI. And I'm guessing that, even if it did appear for the first time when you stopped the Celexa, it still may not be discontinuation syndrome. I'm guessing it could be possible to have dysautonomia that was previously mild enough not to notice, but perhaps flares could be "triggered" by going on and off an SSRI? Wild guess though, so don't quote me there. It is also possible to have dysautonomia without POTS (I myself may now have this). But still, you might want to discuss discontinuation syndrome with your doc while you're going through exploring the dysautonomia/POTS diagnosis, if it seems to fit your situation.

According to my POTS doc at Mayo (and I'm pretty sure I've read this in the literature as well), it is normal for many people's heart rates to skyrocket when they first transition to a standing position - often more than 30bpm - even people who don't have POTS. But in those people who don't have POTS, the increase only lasts a few seconds to a couple minutes. In POTS patients, that increase usually lasts more than 10 minutes. I was in grad school when I got sick, and just for fun, my entire physical exam class decided to do "poor man's tilt" tests on each other. Out of a class of 15, I think 13 of them had an increase of more than 30bpm on standing, but it went back down closer to their sitting rate within about 30 seconds. None of them had symptoms. A couple of them didn't have any increase when going from sitting to standing. Most of my extended (non blood related) family also has this increase (my sister in law's increases 40-50bpm when standing from a sitting or lying position, but she doesn't have symptoms and her heart rate is back to normal within about 10-15 seconds). My point is, you're not alone in that your body likes to play "yoyo" when first standing up - this is common to many, even healthy people without POTS This doesn't mean you don't have POTS, however. We all can have good and bad days, especially if medications are involved. Are you symptomatic in that 10 seconds when your heart rate first skyrockets?

A couple of my POTS specialists use SSRIs to specifically treat POTS. One told me that almost half of his patients have improved on SSRIs pretty dramatically to the point of having virtually no POTs symptoms. I don't know that those numbers are representative of the entire population, though, as it's a small practice. It's true SSRIs are stimulating, as they increase serotonin (and serotonin can act as a stimulant). However, by increasing serotonin, they can, in theory, reduce the adrenaline/noradrenaline involved in the surges we get. And the serotonin becomes less stimulating over time as the body gets used to the extra levels. Serotonin also plays a role in stabilizing your autonomic nervous system, so that can help as well.

I haven't tried it, but there's another thread on this here, where I wrote a fairly detailed response with my opinion of the program from just the ads and speaking to reps, etc.: https://www.dinet.org/forums/topic/27200-dynamic-neural-retraining-system/ Long story short, it's using neuroplasticity, which is a cool concept and I believe is useful to help create new pathways in the brain that can stimulate healing, but I do not personally believe it is a cure, in and of itself. Keep in mind that's just my opinion based on what I know of neuroplasticity, though, so it's possible you may try it and find something different. Personally, I use neuroplasticity programs (not the DNRS one though) as an adjunct to my other therapies and find that I heal faster and feel better when I use it, as opposed to when I don't, but I have to have a good treatment regimen in place in order for it to work. For example, I have strongly suspected lyme disease, and always feel better when I'm on antibiotics. If I add neuroplasticity to my antibiotic protocol, I seem to feel better faster than with antibiotics alone, if that makes sense. But if I do the neuroplasticity without the antibiotics, it doesn't affect my lyme symptoms at all.

I became pre-diabetic at the same time I was diagnosed with POTS, so I had to modify my diet for that, but I think what works for each person diet-wise is extremely individual. I've heard people say their POTS or diabetes or [insert other ailment here] improved on vegetarian, or vegan, or keto, or McDougall, or some other diet. But all of those I just mentioned made me very sick, and I'm pretty sure it wasn't "keto flu" or "healing crisis". I stayed on them for at least a month or two each, and I got worse. What works best for me is a low glycemic clean-eating diet. On a low glycemic diet you're still eating carbs, just low glycemic carbs / low glycemic load meals, and normal amounts of fat. It's a pain in the beginning to look up the glycemic index of every food you eat and calculate the glycemic load of all your meals, but I had an app for that at first, and I now I know what I can / can't eat without having to check or calculate. Basically what this diet looks like for me is eating lean proteins (chicken, fish, turkey) and occasional red meat (as lean as possible) as well as really good complex carbs (whole grains like quinoa, oatmeal, certain types/amounts of beans, most veggies, some fruits, certain types of brown rice depending on glycemic index, etc). No sugars or syrups or sweeteners of any kind (honey, maple syrup, molasses, even maltodextrin, aspartame, etc are all eliminated), no processed foods. No simple carbs. I avoid the really high glycemic fruits, but eat all the other ones. My fats primarily come from sources like avocados, nuts, olive oil, and so on, and I eat a pretty normal amount of fats - nothing excessive. I avoid high-fat animal products and vegetable oils, which seem to make me sicker. After a year of this my blood sugars were normal and I felt much better POTS-wise. Now, if I go off the diet for too long I can trigger a return of some of my old POTS symptoms. Fluid control with the diet isn't too bad - I have a good regimen of chicken broth, bone broth, coconut water with sea salt, and IV fluids. In the beginning, I did go through severe carb and sugar cravings but it was manageable - not like the other diets I tried. But I really think diet is a very individual thing. What works for me isn't necessarily going to work for you. You might need to try a few different approaches to see what works. I have quite a few friends with fairly severe diabetes and they all use completely different diets for blood sugar control.

This might be interesting for you: http://forums.dinet.org/index.php?/topic/24421-feeling-great-on-antibiotics-hmm/#entry228491 It seems a lot of people with POTS report feeling worse on antibiotics, but then again, there are many antibiotics that have side effects that involve the heart or nervous system, so it would make sense some of them could potentially worsen POTS. I get much, much worse on Doxycycline, so much so that some of my doctors think it's a Jarisch-Herxheimer reaction, indicating there may be an underlying infection. I wasn't able to tolerate staying on it long enough to see if it actually would make me feel better in the long run, though. Four weeks of it would have been required to really tell if it was helping or hurting. I've been on Keflex, too, since getting POTS, and it actually completely gets rid of my brain fog, cough, digestive issues, muscle / joint pain, and some other symptoms. But, it makes me super tired, and flares my adrenaline surges a little bit. But I haven't been on it long enough to tell if it could actually be beneficial for the POTS at all. I will say, though, that my spouse, who developed POTS shortly after I did, was recently on a pretty long course of Ceftin, and found it cleared up a bunch of symptoms like cough, shortness of breath, fatigue, brain fog, and may have even been responsible for reducing standing heart rates a little. We both got a pretty full infectious disease workup initially, including things like Lyme, bartonella, babesia, mycoplasma pneumonia (for which we are somewhat positive), and a bunch of viruses. However, fevers have always been a symptom we've both had since getting POTS, so we are going to be tested soon for residual / recurrent strep, FL 1953, mycoplasma fermentans, and a bunch more obscure bacterial infections. They're also looking into toxins and mold exposure, though, which is the other reason we haven't been on longer courses of antibiotics yet. Some POTS patients have tested positive for certain chronic infections, like Lyme, co-infections, and others like Mycoplasma pneumonia. I've spoken to several patients whose POTS has gotten better once they've treated the underlying infections - I think there may be a few like that on this board as well (?) Don't know if you've been tested for some of the more common infectious diseases that can go along with POTS, but if you haven't, it might be worth looking into.

I saw this study a couple weeks ago, read through it, and went on a good rant. Basically, Rich, you've echoed most of my issues with the study already, so I won't repeat that. At one point, I was put on an exercise protocol that was very similar to Levine's, from what I can tell (I knew someone who went through the Levine protocol as well, so we relayed experiences). Starting the protocol, standing HR was around 150-160. After a couple weeks of the program (and mind you, I was probably only doing a couple minutes of cardio per day), I stopped sleeping. My standing HR shot up to 200+, and I couldn't even go to the bathroom on my own. My catecholamines went sky high (higher than before). The adrenaline surges were horrific, and were happening 24/7. I wound up in the hospital every few days for things like hypertensive crises, low blood volume, and even complete autonomic storms. I would get nasty fevers about 1 hour after exercising, and they'd last hours, sometimes days, even though they haven't found evidence of an infection or autoimmune disease. My muscles didn't feel sore or simply painful - they felt like they were being shredded with a knife, and no painkillers would help. I developed shaking and tremors as well, and non-stop palpitations. It might sound like I just did too much too fast; however, the program was supervised by one of the most reputable POTS doctors in the country, and at one point I was literally doing only one minute of supine cardio exercise per day, and still getting the same results. I wound up being taken off the program and put on bed rest; I was told the exercise was dangerously activating my sympathetic, and my parasympathetic wasn't compensating properly. After about 3 weeks of bed rest, my standing HR had dropped back down again to around 140. After about 6 months of bed rest, I was a LOT better, with a standing HR of around 120. Many symptoms, like dizziness and head pressure, had gone away on their own. I wound up spending almost a complete year on bed rest. I've been out of bed now for several months, though, and am able to take walks and do a lot of things I couldn't two years ago. It was pretty obvious to me when I felt ready to get back to moving around; I didn't have to fight my body to do it, and it felt right. My standing HR is often actually under 120 pretty often now. Perhaps this was just the natural progression of the illness, but I was getting steadily worse with activity, and steadily better with bed rest. I can do some yoga & slow walking now no problem. The yoga, however, is really more stretching, breathing, and centering work, so it's not really a lot of physical movement. Vigorous cardio still, even just for a couple of minutes, will send me right back to a standing HR of close to 200, and I'll have to spend a week or more in bed to get it back to baseline. So even if I just improved naturally with time, cardio still has the same effect on me that it did when I tried the program. I know cardiovascular exercise does help some POTS patients, and I know most people don't have the dramatic reaction that I did. But I personally think it's not as simple as "cardiovascular exercise can cure POTS"; there can be a lot of complicating factors at play, and adverse reactions are possible (I'm living proof!). But I think most of us already know that anyway

This is really interesting to me. I have not been diagnosed with CVID, but I have the exact same response to antibiotics that you describe. Recently, I went on Keflex for a UTI, and a lot of my really annoying symptoms - like brain fog, headaches, and pain - improved immensely while I was on it. About two days after I stopped it, I had probably the worst migraine I've ever had with this illness so far, and it wound up lingering for around 3 days at least. And the muscle and joint pain slowly crept back, to the point where once again it's unbearable. Also, right after finishing antibiotics, I also tend to get a lot of symptoms coming back that I haven't had since the very beginning of my illness.. it's weird. This has happened before, so I know it's not just the Keflex itself. I haven't considered CVID, but maybe that's something to look into a little more. The current hypothesis is that I may have a chronic, underlying infection causing my POTS, and the antibiotics are controlling it while I'm taking them. When I stop, the bacteria starts multiplying again, and when it comes flooding back, causes a worsening of toxic symptoms (like headache and pain). Don't know if that's truly the case or not - there's a lot of guesswork going on right now!!!

You know, I'm not 100% sure, but I do not think it's rice based. It's Jarrow Formulas, 500mg, and according to Jarrow it is the anhydrous form, which I think is different from the rice-based? But there's really no other info on the bottle, so I'm not completely sure. I noticed on Amazon someone asked if it was from rice-based ceramide, and another user had replied that it is not, that the anhydrous form is different. The ingredient list includes Quercetin 500mg, cellulose, magnesium stearate, and silicone dioxide. Apparently you can contact Jarrow through their website to get info on the source(s) of their products.

OK, here are the recipes I have collected. I haven’t made any of these up myself, they’ve all been given to me by nutritionists, medical professionals, or found in books, and some were recipes I used years ago as an athlete. Keep in mind a lot of these contain sugar or some form of starch / sweetener. The reason is that hydration solutions are much more effective, metabolically speaking, when there is some sort of a sugar, because your body needs that to help metabolize and retain the electrolytes and fluids. This is part of the reason Gatorade contains sugar and Pedialyte contains Dextrose (essentially pure glucose). However, I can’t have much of anything high glycemic, so I do often leave the sweeteners out. Also, people tend to be different with regard to their acid/alkaline balance and what their bodies can tolerate. Over-acidifying or alkalinizing, or taking in too many electrolytes, can actually be harmful. So, at one point or another, I've approved any / all of these with either my doctors or nutritionist, and we've determined how much of any of these I can personally handle (they want me alternating every single electrolyte drink with 16 oz plain water). So I'd recommend talking to your doctor(s) if you have questions about whether these are OK for you. Recipe 1: (recommended by my POTS nutritionist) - A few stalks of celery (added for hydration and fiber content - the fiber actually helps the body absorb and retain fluids and electrolytes more evenly and slowly) - 6 oz lemon juice - 6-8 oz Smart Water or plain water - 1/4 tsp Sea salt Mix all of the above together in a really good blender (should blend the celery down to a juice with a little pulp left). You want it to make about 16 oz of liquid. The original recipe called for ONLY lemon juice, with no water or anything. I found that much lemon juice was too acidic for me personally, although for some people, the citric acid from the lemons is actually alkalinizing, so it varies. I have also substituted coconut water, orange juice, electrolyte mix, and various other things for lemon juice, and that works just as well. Recipe 2: Homemade Pedialyte: (I think this one came from a paleo book that my PCP lent me?): - 8 oz apple juice - 32 oz water - 1/2 tsp sea salt - 1/2 tsp LoSalt (for the potassium content) - 1 tbsp honey Recipe 3: This one, to my knowledge, is essentially the one used by the WHO: - 32 oz water - 2 tablespoons sugar, honey, or molasses - 1/2 teaspoon salt - Add 4 oz of juice if needed for taste (orange, lemon, lime are best due to nutrients in citrus) *To reduce sugar content, you can also do half plain water and half rice water; rice water contains starch that can metabolize into sugar, so you could cut the sugar content by half if you do that. Or, you could substitute some rice cereal (ground up), the kind given to babies, instead of sugar. Recipe 4: - 24 oz water - 4 oz lemon juice - 1 tbsp lime juice - ½ tsp sea salt - ¼ tsp baking soda - ¼ cup honey Recipe 5: Hydration Shake (this was recommended to me years ago as an athlete, so I can’t remember exactly where I got this one). - 6-8 oz kefir (dairy has actually been proven to be hydrating, used by some as a sports drink, and I choose kefir due to the added probiotics for digestive health). You could also use Smart Water, plain water, ice cubes, etc. - 1/2 to 1 whole avocado (depending on size) - contains electrolytes - 1/2 to 1 whole banana (for electrolytes, like potassium) - Berries (any kind, enough for taste) - 1/2 to 1 whole cucumber (they're hydrating as well) - 1/4 tsp sea salt I seem to absorb / retain fluids better when I have electrolyte sources from whole foods in my diet, and I have an issue with weight loss, so this shake works really well for me. I have at least one a day, and definitely notice a difference when I don't have it. Also, in my previous post, I forgot to mention two more electrolyte drinks that I absolutely have loved in the past: - Recharge (can get this from a natural food store usually - it's basically gatorade made with juices instead of sugar and flavorings) - HoneyMaxx (have to order this one online, I believe)

Mold and candida are diagnoses that don't really have definitive tests that can tell whether you do or do not have them. Spinal taps can occasionally find evidence of other kinds of fungal infections, but those are usually are only found in people whose immune systems are severely compromised. Testing for mold is done through urine mycotoxin testing, a panel of specific inflammatory bloodwork (TGF beta, MSH, C4a, and a bunch of others), genetic testing, lung scans that can sometimes show mold deposits in the airways, and sometimes mold cultures done in bloodwork. Testing your house is also usually done. But even with all of those things, it's still a lot of guesswork. Candida is usually a clinical diagnosis, done without a lot of testing, but things like comprehensive digestive stool tests can sometimes be helpful.Testing for mold and candida typically isn't done by most mainstream specialists. You'd need to see either a toxicologist or pulmonologist who has a special interest in mold issues, a biotoxin specialist that is Shoemaker trained, or another environmental medicine doctor. I haven't personally tried antidepressants yet, but I've found benzodiazepines (anti-anxiety) extremely effective for my POTS. I've taken Klonopin daily for almost two years, and the difference in my POTS (and many of my neurological symptoms) is amazing. I've also had two POTS specialists say they have patients who have benefitted from SSRI antidepressants like Celexa, Paxil, and Lexapro, and SNRIs like Venlafaxine, so one of those might be on the table for me down the road. Makes sense, as serotonin does play a role in regulating autonomic functions, especially blood pressure. I was put on Celexa years ago when I had Lyme, and even though I didn't have dysautonomia then, it helped with many of the Lyme-related symptoms such as electric shocks, brain fog, dizziness, wooziness, panic attacks, and even palpitations for some reason. My POTS doctor told me if I was ever going to go back on Celexa, I was going to be given a liquid, and take literally like 1 or 2mg per day to start (the usual starting dose is 10-20mg). Dysautonomia patients can be extremely sensitive to antidepressants, and it can make you a little worse before you feel better, so tapering up SUPER SLOWLY Is key, I've been told.

I took it for awhile. I was never officially diagnosed with MCAS though, all of my tests have been consistently negative. Some doctors feel I have some form of it, others say I don't. So I don't know if I'm the best judge of its efficacy. However, I had at one point uncovered some research that said it functioned comparatively - or better than - drugs like Cromolyn, so I tried it just to see.. The nice thing was, I didn't react badly to it, at all. I had no side effects whatsoever, which is amazing, because I react badly to all antihistamines, H2 blockers, Cromolyn almost put me in the hospital, and so on. I react to almost everything I put in my body, whether it's a medication or a supplement. So being able to take Quercitin was really nice. There were some days I felt it really helped my symptoms, especially vasodilation and allergy-type symptoms, and there were other days where I felt it really didn't do anything. Really hit or miss for me. But again, we're not 100% sure I have Mast Cell to begin with... My spouse has horrific allergies and uses it for that, says it works wonders for allergic symptoms - better than any antihistamine.

OK, sorry, this might be a long post, but wanted to list everything I could think of : ) I had to get creative, because my POTS is highly reactive to the sugar & artificial additives in commercial electrolyte formulations. Some of these have the same amount of sodium as Pedialyte, while some of them have lower concentrations of sodium (more equivalent to gatorade). However, if I wanted the higher Pedialyte-type sodium levels, I found it was actually more cost effective for me to just use a good electrolyte preparation that may be lower in sodium, and add my own sea salt. I try to shoot for about 500mg sodium (approx. 1/4 tsp sea salt) per 16 oz of water (that's what the doctor recommended, and that's what is in Pedialyte). For comparison, I believe there's around 200mg sodium per 16 oz of Gatorade. Here's my list. Most of these are much more cost effective for me than Pedialyte or Gatorade, but a couple of them (like Nooma) might be similar in cost. Coconut water - this one is fantastic! I had one POTS doc and a nutritionist strongly recommend this instead of commercial sports drinks. Even though most brands do have similar sodium content to gatorade, I still add enough salt to get it up to 500mg per 16 oz, and it works beautifully this way! It can often pull me out of certain types of flares better than anything else I've tried. I get it in bulk at a natural food store, so it's actually fairly cheap for me.Gerolsteiner mineral water - has a really good amount of sodium & electrolytes. I had doctors recommend this one also. Sometimes I add juice so it's like drinking healthy soda.Chicken or vegetable broth - Another dr. recommendation. It's cheap, has lots of sodium, and electrolytes too. LyteShow electrolyte drops - really economical, has the same amount of sodium as gatorade, but I still add extra.Elete electrolyte drops - similar to LyteShow, but a little less concentrated / not as strong.Emergen-C brand Electro-Mix (I don't use it often, because it has maltodextrin, but I'm great with it for occasional use). I add 1/8 tsp sea salt to it for every 8 oz I drink. Ultima Replenisher - I love this one too. It has other vitamins/minerals that seem to really help me, besides just electrolytes. Again, though, have to add 1/8 tsp salt for every 8 oz, and don't use often due to the maltodextrin (although it is organic / non-GMO).NOOMA organic electrolyte drinks - these are fantastic, but I don't drink them as often as they still have a teeny bit of sugar. Has a decent amount of sodium (comparable to gatorade I believe), but I would usually still add a little extra. This one's also a bit pricier, might be around the same price as Pedialyte?Flavored salt water - I do this all the time, because it is by far the cheapest option. Salts like RealSalt and Celtic Sea Salt already have naturally occurring electrolytes, so I might add 1/4 tsp to a 16 oz mixture of water and something like a little juice (any flavor) or herbal tea, or I might make a flavored water with cucumber, strawberries, or other fruit. If feel I need extra electrolytes, I'll add some drops like LyteShow.Hydration alternatives I've tried but no longer use: Salt tablets. I preferred the Salt Stick brand, but others like Thermotabs. These are great, because basically then you don't have to worry as much about what you're drinking.Tomato juice - I have a few Potsy friends who swear by this, kind of like I swear by coconut water. I hate the taste though.Pickle juice - my spouse loves the taste of this, and finds it to be a really effective way to get enough sodium. Soups - my first POTS doctor told me to add a bunch of high-sodium soups to my diet. I actually prefer my current regime, but I still do this occasionally.I also have a bunch of recipes for oral hydration solutions you can make at home, that are pretty cheap and taste good. I can post those as well, if you'd like. Just didn't want to make this post any longer!!

Not sure where whether you have access to any major databases, but if you go to a database like PubMed, and use the search term "transcutaneous vagus nerve stimulation" or "non-invasive vagus nerve stimulation" you'll get about 100 articles on non-surgical / transdermal VNS used for various conditions - including epilepsy, depression, inflammatory conditions, and various others. Many, if not most, were published in 2015, and many are also peer reviewed. It's a relatively new area of research, but seems to be really promising. This is a good overview and includes an explanation of nVNS (non-invasive vagus nerve stimulation) if you're able to access it: http://www.ncbi.nlm.nih.gov/pubmed/26381725 There were some theories that vagus nerve dysfunction was one of the primary issues in dysautonomia, and I don't think it's been completely ruled out, so I would think this could be an interesting treatment option. I don't know anything about the Thync device, though, and like you, Rich, I don't want to be a guinea pig for $299 just yet!!

My spouse found the potscare website at one point, so I did a lot of digging to try and see if there was any chance it could be a legitimately beneficial option. Let me preface this by saying: I haven't been there, so I absolutely cannot speak to their practices. It might be a miracle for POTS patients, or it may be another practice just trying to make money off those who are desperately looking for answers. I really have no way of knowing. I have heard there's a ton of controversy around it, however. That said, I can tell you this: you can look up Dr. Diana Driscoll on YouTube. She explains her philosophies in her videos. I would also recommend looking up her personal website, and digging around and reading some of the stuff on her forums for patients who are on her protocol. You might also do a search on here for some of the drugs she's used to treat POTS patients. I would also suggest looking very closely at the credentials of the doctors at the center (Drs. Diana & Richard Driscoll and Dr. Cordas). Contact them and ask a ton of questions. Pull up the research articles cited on the "research" section of the Potscare page (a lot of them are available through PubMed or local libraries). I personally chose not to go for many reasons, but on the whole, I don't feel I fit in with Dr. Driscoll's philosophies about what the underlying causes of POTS may be. I don't think I will benefit from any of the treatment options she uses. I'm also always wary of establishments that don't accept insurance, and aren't reimbursable after the fact, either. My insurance covers a lot - I can pay out of pocket for experimental stuff, naturopathic care, acupuncture, but they'll reimburse a lot of those expenses after I pay out of pocket. Nothing they do at Potscare is reimbursable, even after the fact, and that just makes me a bit uncomfortable and raises some red flags. But again, I haven't been there, so I know nothing of the center. My best advice is just to be as thorough as possible with your research.

I hear you! I've had a lot of people recommend a lot of supplements that would have been very expensive and, as I found out later, would have been unlikely to help. Yes, my liver enzymes were slightly elevated for pretty much the entire first year I was sick. They started going back to normal after that, but I haven't had them tested in awhile. It's been explained to me that looking for mold itself in the blood is also very hit or miss, because it's the mycotoxins (mold byproducts) that get into the circulatory system, rather than the molds themselves (although rarely people do turn up positive, which is helpful). I'll PM you with information on my doc. Actually, I might have a few names for you, since I've lived in 3 different states since I got sick!

oneearth - yes, I do react to carbs. I can't have simple carbs at all. I actually found that by eliminating them, I improved my POTS greatly. The other interesting thing I forgot to mention: research has shown that mycotoxins can impair our ability to metabolize and use vitamins B1 and D3, and interestingly, various blood tests have shown I am low in both. We've ruled out genetic, dietary, or other causes, and my spouse is also low in both of these as well. We both now take B1 and D3, which has really actually helped improve the POTS itself. I do know that my D3 and B1 tests were normal before I developed POTS two years ago, so it's something that happened suddenly. The only red flag is that all of the other tests in the mold panel that they typically run were normal. Most people who have urine mycotoxins and high TGF beta 1 tests have altered MSH, VIP, complement levels, and a bunch of other abnormalities, but mine (and spouse's) were all within normal limits. I'm still waiting on the MarCoNs nasal swab test results, though. Right now, based on the test results we do have available, doctors think mold is probably a factor, but not the only factor, contributing to illness. Especially since I have a really weird history of lyme and other chronic viral / bacterial infections. I've had stool tests for fungi that were negative as well, but some of the docs I've worked with said it's really too hard to culture fungi in stool, especially from mold patients, so the results are rarely reliable, even if it's from a reputable lab. Molybdenum might be something to look into, I seem to have no issues with that as I've taken it before, so I might bring it up with my doc. I was taking charcoal regularly (which helped with certain symptoms) and they are now switching me to Zeolite. Can't take cholestyramine because it causes digestive issues for me. So, as far as who is testing / treating me for this.. it's been a little bit of everyone! My POTS doctors (I have two of them right now because our case is so complicated) both suggested mold as a trigger. They told me to get my current house tested and referred us to a pulmonologist who is well versed in fungal issues / mold exposure patients. My cardiologist also picked up on the mold possibility and sent us to a toxicologist. Eventually, though, we got the name of an MD who specializes in biotoxin illness. I believe she has a background in toxicology, but basically right now only treats mold patients. She is familiar with Shoemaker's work but in my opinion, diagnoses and treats a little more scientifically and safely than some of the other docs who follow Shoemaker.

onearth - I tested positive for mold mycotoxins in my urine as well. My TGF beta 1 (blood test) was off the charts high, which isn't completely specific for mold illness, but is often seen in patients with mold toxicity. I also test positive for a highly mold susceptible genotype. They are looking for different molds in my bloodstream through FDA approved, science backed blood tests, and I'm waiting to find out about lung scanning, since the pulmonologist I spoke to said he diagnoses a lot of cases of mold exposure through visible mold deposits in the lungs. I'm still not 100% convinced mold is the only issue with my family's POTS, but we've ruled out a lot of other stuff so far, so it's definitely still on the table. sue1234 - the way it was explained to me is that there are hundreds of strains of mold, but only a few (maybe even only one or two strains) are neurotoxic enough to cause POTS, so perhaps that would account for the fact that many people have mold issues, but not all of them have issues with dysautonomia. And of course, if there's genetic susceptibility, that would make it even more variable. One of my POTS docs is treating quite a few families that are sick and don't have EDS or other metabolic abnormalities, although it's typically blood relatives (siblings or a parent/child combo). I think I'm the first case any of my doctors have had where there are non-blood related family members who got POTS at the same time though. POTS isn't really epidemiologically tracked, to my knowledge, so it seems as if we simply don't know enough to draw any real conclusions about its genetic patterns (or lack thereof).

db2504 - I forgot to post a link to this thread, it's one I started about both my spouse and I having POTS, but there are a lot of helpful comments in it regarding mold exposure. Hopefully there's something in there you find helpful: http://forums.dinet.org/index.php?/topic/26926-pots-occurring-in-multiple-unrelated-members-of-the-same-household/ I'm actually seeing a Shoemaker-trained physician right now, and have had some really helpful testing done (although keep in mind, Shoemaker's work is not considered valid in the eyes of some medical professionals). Sylvie33 - very interesting about genetics and gulf war illness. I'd heard quite a bit regarding the Mestinon and how it was thought to be toxic, then that was debunked, then they went back to the original toxicity theory, so it makes sense that perhaps genes could play a role. Some researchers have identified certain genes they think make people more susceptible to illness from mold exposure, and to developing chronic infections, but information on that is still in its infancy. Yes, I've thought of writing up all of my experiences - especially since it's an unusual case with multiple episodes of POTS stemming probably from the same source - for a wider audience. To begin with, I'm considering at least blogging about it, then seeing where things go from there.

That's actually something I'm exploring right now as well. Both my spouse and I developed POTS within the past 2 years, and we were both previously healthy. We also had a roommate who developed POTS around the same time too. Others on the forum suggested we look into mold toxicity, and we do know we were living in a water damaged, and extremely moldy, building right around the time I officially got diagnosed with POTS. Additionally, I've had two big-name POTS doctors tell me there hasn't officially been any scientific literature showing a correlation between mold and POTS, but they've had enough patients who were exposed to it right before they got sick that they can't say it doesn't at least trigger POTS, or make it worse, in susceptible people. They told us to go through testing our house and seeing an environmental medicine specialist. Mainstream medicine largely ignores mold exposure, but my POTS doctors believe there simply hasn't been enough legitimate research done to know exactly how much of a role mold exposure plays in various illnesses. They've sent us to a reputable physician in the area who actually specializes in mold exposure & biotoxin illness, and we got our house tested. We are also supposed to see a pulmonologist (if you have a cough, as we do, that could be a big indicator, and some scans can catch mold issues in the lungs). We were also sent to a toxicologist, which would have probably been a great idea, although this particular toxicologist didn't believe POTS was a real illness, so he didn't look into anything. He also told us that mold exposure illness is a myth and doesn't exist - says even severe black mold infestation will only cause allergies, nothing more. I talked to another toxicologist later who said mold absolutely does cause severe illness (including neuro issues), and wouldn't be surprised if it causes POTS. So the opinions among the medical community seem pretty divided on this.

Someone else recently found the wheelchairtorollerblades blog (it's not actually a blog, just an advertisement), and I wrote a pretty detailed response to them in this thread: http://forums.dinet.org/index.php?/topic/27200-dynamic-neural-retraining-system/ I won't repeat my whole response here, but to sum it up, this program uses principles of neuroplasticity, which has actually been proven to work by retraining the brain to go into "healing mode" as opposed to the emergency/stress/fight or flight mode that the body gets stuck in during chronic illness. If healing from a particular disease is possible, using principles of neuroplasticity is thought to speed that healing process (I have a family member who is doing research in this area right now). That said, I believe neuroplasticity, while probably not a cure in and of itself, may be a valid treatment to help push healing along. I just don't trust this particular program, because it seems to make too many outrageous claims, and its method of advertising seems suspect. Neuroplasticity can also be used in various therapies that are either covered by insurance or are much less costly.