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!