albertspa

@MikeO Looks epic!

Looks great! A little tip is ice cubes. Adding them to the food processor / mixer does wonders for smoothness! Also did you "deshell" them? The little skins around the chickpeas, if not removed, make the hummus a bit coarse. Best way to do it, is rubbing the chickpeas between your hands in a bowl of water and then the skins should just float to the top (I typically cook dried chickpeas, instead of using ones from a can, cause the shock from hot water to cold water separates the skins more easily, just like with potatoes). I'm sure you've done your homework and added olive oil and tahini, which also contributes loads to the smoothness. ⭐

Hey guys, Does anyone else have this incredibly uncomfortable feeling, as if your shoulders and neck are pulling upwards, sorta "sticking" to your head? Coat-hanger pain is a characteristic symptom of POTS, but I haven't really found anything without the variable of pain itself and just this really "yucky" and tense feeling. My doctor (neurologist) said it's likely my muscles not being supplied with blood when I'm in an upright position, creating tension in the area that's meant to support my head. I would love to hear from someone who has similar experiences!

"The orthostatic symptoms consist of symptoms of reduced cerebral perfusion coupled with those of sympathetic activation. The most common symptoms are lightheadedness, palpitations, symptoms of presyncope, tremulousness, and weakness or heaviness (especially of the legs)." Low, P. A., Sandroni, P., Joyner, M., & Shen, W.-K. (2009). Postural Tachycardia Syndrome (POTS). Journal of Cardiovascular Electrophysiology, 20(3), 352–358. https://doi.org/10.1111/j.1540-8167.2008.01407.x

Absolutely. It's tough to arrange much into the future, since even within the next hour things may shift and sway towards either spectrum of "good and bad". He taketh and he giveth away 🥸 Fluctuation is a known characteristic of POTS unfortunately. Narrowing things down to an average threshold, in terms of how bad it can get, is my method of choice when determining the progress of treatment in the long haul

"The emphasis on postural tachycardia does, however, have a disadvantage in that it ignores nonorthostatic symptoms" Low, P. A., Sandroni, P., Joyner, M., & Shen, W.-K. (2009). Postural Tachycardia Syndrome (POTS). Journal of Cardiovascular Electrophysiology, 20(3), 352–358. https://doi.org/10.1111/j.1540-8167.2008.01407.x

Thanks for the reference 👌

@MikeO Here's an update on whether you would be able to use it outside of the US, even if you were to have it shipped through a third party. It's kind of a vague response.

Definitely. Just a little under two years ago, I was studying architecture and on my way to pursue studies in neuropsychology. I was managing a restaurant, couldn't spend a day without meeting a multitude of friends, and was talkative and desirable. Now, I'm beyond recognition. I had to give up my apartment, quit my job, put my academic endeavors on hold, and cascaded into social isolation because of the myriad of symptoms that make social interaction undignified and anything but pleasurable. It's a tough situation to find yourself in, but I believe it's important not to find comfort in your discomfort. Articulate an achievable vision and don't settle for anything less than that. The saying 'A healthy person has a thousand wishes, a sick person just one' holds a powerful truth. I find some vitality in substantiating my experiences by reading up on medical literature (compiled it on a website, if you're interested: http://www.wikipots.com. There's also a section that includes research on the impact of POTS on daily life and functioning). Not being alone in this experience definitely provides some alleviation, but it doesn't give you insights into your personal prospects, and deriving strength from shared suffering is not optimal. Ultimately, what keeps me in check is being stubborn about the return to at least a semblance of functionality, even if it's one that you must build upon. Having a healthcare provider who doesn't deflate your intelligence and is willing to give you a genuine outline of the plan of action is, I think, of utmost importance when formulating a strategy. I found that articulating my predicament in a journal, keeping track of my vitals, even if just as a mental exercise of routine, has been beneficial when serving as irrefutable evidence of documentation for whenever any doubts about the nature and validity of this invisible illness arise. The silver lining of this journey is that it enables you to build unshakeable resilience and enough fortitude to last a lifetime. However challenging these trials might be, I believe it stands to reason that your durability is an exemplary source of pride. Good luck, and do count on yourself! Urgency is a paramount variable in the equation of resolving sickness, so you're surely on the right track!

@MikeO@Sarah Tee Thanks for the answers guys! So I asked STAT Health directly via facebook and this was their response. Seems like you were right, Sarah, it appears they didn't yet get the regulatory approval to operate from outside the United States in regard to personal data collection and the like. This somewhat implies that you may be able to use it from outside the United States, so I bet you could have a relative or friend purchase and send you one.

Is there a reason why this isn't available for purchase from overseas?

Yeah I think introducing her to forums and channels that enable her to draw her own parallels and expand on her personal understanding of the condition could also be of great help when it comes to affirming her experiences with a diverse array of first-hand reports and substanciating it with medical literature. It's tough navigating that with a google search alone because initially you may not know which hubs are credible.

Hey guys, So I have hyperadrenergic POTS and I have a myriad of symptoms (ranging from ocular, gastrointestinal, shortness of breath, coat-hanger, slurred speech, tight throat, etc) both when standing up and sitting down. Both my heartrate and my symptoms get better in the evening. Brainfog is, unfortunately, as for the vast majority of patients, a major issue. However, what I've found, is that, sometimes when I'm passionately involved in an argument, my brainfog gets somewhat better, leading me to articulate myself more fluently, as long as I'm in the momentum of, let's say, laying out a logical argument. I have some make-shift speculations on why that may be so, but so far it's more of an intuition, than anything backed by medical evidence. What I was wondering is whether that may have something to do with the blood-flow reaching "the head" better if you're emotionally invested/passionate in the momentum of an argument or debate, allowing for a short window of "improved cognition/attention"? Hoping someone has had similar experiences or could substanciate this with a hypothesis!

Yeah I second that! The access to thorough testing is definitely subpar, and, despite living in Europe, where we have universal healthcare, I find myself having to pay out of pocket for most of the POTS related medical attention, both because our doctors are largely oblivious to the condition (requiring me to sift through the few specialists) and because the waiting lists are so packed. 😕 I even had to travel from Austria to Poland to find an affordable private clinic that does the HUT (tilt-table) test.

I mean to be fair, that's not the only inclusion criteria when it comes to POTS (presence of chronic symptoms of orthostatic intolerance that get worse with standing and better with recumbence) and the exclusion criteria (not having OH), differential diagnoses, as well as autonomic and laboratory tests are what reinforce the initial suspicion of a POTS diagnosis. Granted, people get misdiagnosed, and, secondary POTS, as well as underlying conditions, are a thing - but it's not like you can't distinguish between POTS and some other condition, if you thoroughly investigate it. Thanks! I tried the ketogenic diet for about 3 weeks and my average heartrate went up by 20-30 BPM, so I may take it slow with the diets for now, in order to not compromise the results for my medication trials, but I'll pin it in the blog and revisit it. Word!

Just bought all the ingredients for the WHO ORS formulation and it doesn't taste sweet at all (nor does it taste salty). Just tastes like thicker water, for anyone who worries that the glucose might affect the taste. It has 75 mmol/L of sodium, meaning ≈1.72 g/L of sodium. (https://www.ghsupplychain.org/sites/default/files/2019-02/MNCH Commodities-OralRehydration.pdf)

Yup, they're basing theirs on the WHO formula. How much do you consume of it? And do you consume it throughout the day or in one sitting? I'm curious cause many studies speak of 5000 - 12 000mg of sodium intake recommended for a POTS patient, while there's only 851mg of sodium per 500ml in one Normalyte solution packet. Do you use salt supplements in addition to the ORS?

@MikeO Unfortunately water itself doesn't do it for me and I gotta consume more sodium anyway, since I'm on fludrocortisone. 🫤 But aside from that, increased sodium intake is recommended by virtually all medical literature when it comes to POTS to counteract the hypovolemia and elevated plasma norepinephrine, that contribute to excessive orthostatic tachycardia, by increasing the plasma volume. What I'm curious about is whether the glucose in ORS (which evidently is required in order to facilitate the absorption of sodium and thus fluids) doesn't compromise the low-carb approach, which is also recommended for POTS management, since glucose is a carbohydrate.

So, up until recently, I've been making my own Oral Rehydration Solutions based on the ORS formulation recommended by the WHO (WHO Oral rehydration salts, 2006) which was also referenced in a study about POTS (Medow 2019) : Ingredient Amount per liter of clean water Glucose 13.5 grams Sodium chloride 2.6 grams Potassium chloride 1.5 grams Trisodium citrate dihydrate 2.9 grams At the time I replaced the glucose with a sugar-free alternative (to save on the calories), but I recently found out, that glucose was actually essential for the absorption to work well. (e.g. "The gastrointestinal tract relies on sodium-glucose cotransporters (SGLTs), which are carrier proteins in the intestinal cells. Cotransporters help move substances across membranes. Specifically, SGLTs pair together sodium and glucose transport in the small intestine. This allows glucose to increase the absorption of fluids. Additionally, sodium needs glucose in order to be properly absorbed. This is why ORS contains both glucose and sodium." healthline.com - How Oral Solutions Help to Manage Dehydration "glucose facilitates the absorption of sodium (and hence water) on a 1:1 molar basis in the small intestine" WHO Oral rehydration salts, 2006 "Specifically for oral rehydration salts, they have a very specific osmolality, so the concentration of sodium and glucose is really specific. So if you overdilute them, they won't be absorbed correctly." Dr. Amanda Miller Dysautonomia International Webinar 2022, Dr. Amanda Miller) Now my question is the following: Since it's also recommended to decrease your carbohydrate intake, how do you guys make it work with the glucose in Oral Rehydration Solutions? (whether it be homemade or brands like Liquid IV, etc.)

@Ginger_ Yeah caffeine is another thing. Some report that it helps them with feeling more alert, while for others it worsens the symptoms quite consistently. I wonder if hyperadrenergic types might be more prone to that, due to the catecholamines. @Sea otter Had it linked in my initial post already, but thanks for the contribution! @Looking_for_light Oh, interesting, I'll add it to the list. Thanks! @Sarah Tee Hm, curious that porridge would prove to be more beneficial to you than going totally low-carb 🤔 And about the fasting thing, I've had similar experiences actually.

@MikeO Oh dang, EDKA doesn't sound fun, I'm sorry you had that experience. And yes, fasting is not something I would be aiming for anyway to relieve POTS symptoms. I'm not looking to lose weight. But since carbohydrates are said to be potential amplifiers for POTS symptoms, I suppose, some patients might resonate with an established diet plan that they can turn back to when it comes to recipes, which include that feature, such as the 'Ketogenic diet'. But yeah, I agree, I think being too restrictive might surely lead to some undesirable collateral damage. Thing is, it's easier to navigate it with some general silhouette in mind. Thanks for your insight! @MomtoGiuliana Okay, so, so far your regiment corresponds to the general consensus. Is the potassium related to counteracting potential hypokalemia that might ensue from an adverse effect of fludrocortisone or is that generally part of your electrolyte combo for POTS to increase blood volume? @Sarah Tee The reasoning seems perfectly sound, I'm curious to see where the research with the 'anti-GIP' might lead. Thanks for the explanation and the new references! @Looking_for_light Yeah I was also surprised to see the 'DASH diet' mentioned in relation to POTS, due to the sodium reduction - seems counter-intuitive. Interesting proposition with the avoidance of norepinephrine-increasing foods for the hyperadrenergic subtype. That's an avenue I haven't considered yet, I'll look into it, thanks!

Hey guys, So I keep finding blogposts, articles and videos about how a particular diet plan may be beneficial to POTS patients and might relieve symptoms. However I can't seem to find any concrete reasonings in terms of how it's supposed to counteract or alleviate the pathophysiological mechanisms leading to POTS symptoms (taking aside the high fluid and sodium intake that're recommended in the conventional treatment for POTS). Eating small meals throughout the day and lowering carbs [1] [2] [3] [6] [7] [8] [9] seems to be the consensus everywhere, even though there don't seem to be any definitive recommendations in medical literature related to POTS (except for mentions of patient reports in relation to carbohydrates in some medical papers [Mehr-2018] and brief recommendations when it comes to eating smaller portions [Bryarly-2019], as well as a proposition for a gluten-free-diet in [Zha-2023]) So far the regimens I've found online, that reportedly are said to relieve POTS symptoms, are: Mediterranean diet (Emphasizes fruits, veggies, whole grains, and healthy fats) [4] Dietary Approaches to Stop Hypertension (DASH) Diet (Reduces sodium, promotes fruits, veggies, and whole grains) [4] Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) Diet, (Focuses on brain-boosting foods like leafy greens and berries) [4] Peripheral Arterial Disease (PAD) Diet (Reduces saturated fats, increases fiber, potassium, magnesium) [4] Low Inflammatory Foods Everyday (LIFE) Diet (based on dark green, leafy vegetables) Low FODMAP diet (Restricts certain fermentable carbohydrates) [5] Portfolio diet (Adds cholesterol-lowering foods like soy, nuts, and fiber) [4] Ketogenic diet (High-fat, low-carb diet inducing ketosis) [10] Gluten-free diet (Eliminating gluten-containing grains like wheat, barley, and rye) [Zha-2023] I'd like to find out what diet plans you guys have found to be most helpful with your POTS symptoms (hence the poll) and would love to hear your experiences and insights!

Hey guys, So I've been compiling a collection of citations related to POTS I pulled from research papers I've read, to have a personal reference, and sorted them into a structured table of content. Upon my doctor's request, I've decided to make this collection public: www.wikipots.com Perhaps it may benefit some of you, since it's kinda tough to navigate and keep a coherent overview of the medical literature relating to POTS! What speaks for this particular format, is that you can just hover over the reference and get the direct citation. So far I've covered 22 out of the 176 research papers that're currently in my repertoire and I'm continuously going down the list and including them into the collection. Please feel free to relay any impressions and feedback you might have

@Delta Hm interesting, however in my case, since I'm mostly in bed (ever since the current wave hit), exercise or going about the day shouldn't be a contributing factor to feeling better at night. It seems, that as soon as it gets dark outside, my symptoms are somewhat alleviated, especially during the night (even when sitting or standing), so it's gotta be some environmental change, since every other factor, at least in terms of my performance, remains the same. My doctor also asked me to incline my bed by 20 cm, and, even though it's tough for me to determine whether that's been helping, or whether it's the fludrocortisone and sodium pills which I started simultaneously (or the combination of it all, for that matter), the symptoms do seem to have gotten somewhat better! Thanks for your answer! It's always helpful to draw some parallels to other experiences, and yes - I'm really glad I found this forum, it's such great support and so informative! @Pistol It's so odd to me that people seem to typically report the contrary though. They don't seem to tolerate rain at all. I started journaling my symptoms throughout the day about a month ago and did an excel table recently, listing down every journal entry with the corresponding weather data, which I pulled from my local weather station. Interestingly whenever I felt better, the temperature and the air pressure remained relatively stable (slight drop on average), but the relative humidity increased compared to the last journal entry (and/or the previous hour). Dunno what that could possibly mean in relation to the symptoms though. The only theory I can come up with is, since high humidity reduces the rate of evaporation of sweat from the skin, that may perhaps help conserve fluids and maintain blood volume. 🤷‍♂️

@Sea otter Yeah thanks anyhow 😄. That's the odd thing though, I can't seem to find any reports (or even posts on this forum for that matter) about symptoms being alleviated in concurrence with rainy/cloudy/stormy weather. Since I'm experiencing the same relief when I'm awake at night (and in that time the barometric pressure typically remains relatively stable), my thinking is that it might involve some other parameter, such as an increase in air humidity or the decrease in light exposure? 🤔