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brainchild

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  1. I have only tried Trioral, so cannot compare. I purchase via Amazon and since I know I’ll use them, I buy the 100 count box for something around $40. That makes it 40 cents per 1 liter; I tend to drink 2-4/day.
  2. Hi @chronic-tea-tea. Looks like you’ve had some good input on a few facets of your experience and concerns. I’ll add my experience with TTT. I had only done the stand test, at home no less. I did the test several times and met the POTS criteria each time. I was recently seen at a specialty center and I too was nervous that I had done enough to compensate via diet/meds/lifestyle that I wouldn’t meet the criteria. I elected to stop all the things that helped me a week before the appointment (they sent info that said to stop all but a few certain meds something like 24 hr before). I had an out of state trip and arrived early. It rained the day before my test, so I hung around in the hotel room and read. During the test, I got a few symptoms but nothing like what I was getting with the stand test. So that added to my concern that I’d finally made it to this appointment and it would be for naught. My HR increased nearly 50bpm and went above 120, even though I didn’t feel super terrible. I clearly can’t know what’s going to happen for you, but based on what I experienced, if you’re symptomatic, you’ll likely be for the ‘big day’ too. I understand your desire to have a name for what you are experiencing. I don’t faint and I fall well within the ‘you look fine’ category, though I have a variety of symptoms which make life difficult and my social life very small. I wish you all the best with your move and your upcoming appointment. Please be sure to update us how you are doing and what happened once life settles down afterward.
  3. I like trioral also. It has sodium and potassium as well as some glucose. As I understand it, the formula was designed for rehydration in the face of illness (its a WHO formula, so think cholera). The glucose is there because sodium uptake is via active transport which requires energy. I haven’t tried any other electrolyte or sodium drinks so can’t compare.
  4. I have this too. You’ve described it very well. Same story for me - weird skin reactions to scratches, lying against objects - started in childhood and no one else did the same. Someone would say, ‘oh my god, what happened to you!’ I wouldn’t know what they were talking about, then would look and see red marks. It would look like I just had tangled with a wild animal and all that had happened was I had just lightly scratched an area. I’ve got suspect MCAS (per MCAS literate allergist). I don’t get dermatographism either. I had blotchy skin as a kid - looks like the pictures of livedo reticularis. I’ve also gotten red skin from the shower - only where the water was hitting me. I used to flush for no reason. Do you sometimes get white marks? I will scratch an area, the general area will turn red, but the lines I scratched will turn white. I find antihistamines help. I went off them before my specialty center appt and was able to get pictures of the skin reaction. I’ll add a couple pics. I get red at the back of my head; this one was after lying supine for a massage. My leg was itchy and it reacted. I took picture for close to 30 min and you can still see the red marks. Not the best picture of the white marks because I was driving
  5. I’m hoping some of you can help me figure out how to differentiate all these conditions. I have been diagnosed with POTS (via TTT) and FM (by rheumatologist and neurologist via exclusion of other conditions). I have a years long history of pain episodes which mainly come on in reaction to food sensitivity. I also get pain and fatigue from exertion. I went for a leisurely ten minute swim this week and had to nap afterwards for 2 hours and was done for the rest of the day. I’ve had several times when I’ll be doing some activity and I get a warning sense from my body that I need to stop. If I don’t, then I get a pain flare that may/not come with exhaustion. I don’t think I generally have fatigue. This is becoming more common. I was able to swim for an hour daily back in June. Then I vacuumed the car and pain flared for days Can this all be explained by POTS? Is there some way to differentiate? I keep hoping that I can link everything to POTS because it’s the one syndrome that I can prove that I have. Pain is listed as a symptom of POTS in multiple publications, but I can find precious little of what type of pain and it’s pathophysiology. I’ve had full ANA and GI autoimmune panels which all were normal/negative. All my inflammatory markers are super low. I know that autoimmune conditions can be elusive. I’ve been on propranolol, trioral (water/salt), and elevated head of bed since February. I’ve got suspected MCAS and do better with H2 antihistamines, haven’t found an H1 that does anything yet. Quercetin and vitC don’t seem to have an effect. My main complaint is the pain. It’s always there with intensity from mild to excruciating. Its a whole festival of pain: localized, migratory, burning, dull, stabbing, flu-like, pressure. Its refractory to every medication I’ve tried; from cymbalta, to low dose naltrexone, to Tylenol 3 and another dozen in between. I also get serious brain fog: unable to find words, forget what I just read, can’t think straight. This comes and goes throughout the day. I have never passed out. I do get pre-syncopal symptoms if I stand for too long. I know that exercise is part of POTS management. I’m doing what I can without poking the beast and causing more symptoms I’d really appreciate suggestions on how these symptoms relate to POTS and others’ experiences and recommendations for testing etc. FM - fibromyalgia PEM - post exertional malaise SEID - systemic exertion intolerance disease
  6. I was seen at a Specialty Center recently. I searched this forum and the internet at large for months for any and all information about what would be done and what an appointment there would be like. I want to share what it was like for me for the others who are where I have been. I can’t say which one in a public post as it’s against the guidelines of this forum. I had a poor experience and I feel that it’s more worthwhile to share that not every Specialty Center visit is helpful than to share which one I went to and not say that it was a negative experience. I’m not trying to dash everyone’s hopes. I do want to add some reality that just getting in at a specialty center is not necessarily the holy grail and all will be well if you can just make it there. I read a lot of comments of people who cannot make it to a specialty center for various reasons. All I can share with you is what happened for me and what I thought about it. I can’t guarantee what will happen for you and it is likely that your experience will be different from my own. I am not a physician and none of this is shared in an effort to tell you how to manage your own health. I am sharing my experiences to help others in making decisions, or at least to lower the effect of the unknown. I have included headers as a sort of index so you can find what information matters most to you without having to read the whole thing. I will use “Doctor”, “Nurse”, and “Specialty Center” in place of actual names and will use they/them pronouns to obscure gender so as not to divulge identifying information about which staff/clinic I interacted with. Referral Process I had been reading on these forums and elsewhere of where to be seen. I live pretty close to another Specialty Center clinic, but they don’t accept my insurance and they wouldn’t let me self-pay. So I was trying to decide between Stanford’s review referral and Specialty Center where I went (miraculously in-network with my insurance). I didn’t want to travel due to wear and tear on myself. I figured the cost would be similar between Stanford’s $750 fee and the flight/rental car/hotel/food costs of travelling out of state. I discussed referral to a specialty center with the cardiologist whom I first saw when I suspected POTS. This cardio was aware of POTS, but had never managed a patient. Cardio recommended Specialty Center; he leaned toward being seen in person versus a review of paper documentation. My PCP did the actual referral paperwork. There was a delay in getting all of my documentation, but that was due to office staff faxing blank forms. I was told that it could take Specialty Center some time (I think they said 2 months, but I’m truly not sure anymore). I heard back within a couple of weeks. Specialty Center had all of my information in March 2019 and I was scheduled for an appointment early October 2019. Waiting They did call me at some point to reschedule my appointment; the doctor wouldn’t be in that day. They changed it to about 2 weeks later, and I would be seeing a different doctor. I was really anxious to be seen, so this was the last thing I wanted, but another two weeks wasn’t that bad. I do think that I asked to be on a cancellation list. I was glad that I had decided to drive and hadn’t gotten a flight. I had asked what would have happened had I scheduled a flight when they called to reschedule. They told me that you can get documentation that you are flying for a medical appointment and some/most airlines will allow you to change your flight without a penalty. But please ask about this should you choose to fly. I called a couple of months before my appointment to ask if there was anything else that I could do to help; but they just said that they want what they asked for in the referral forms. I had tried to get more diagnostic testing done so the autonomic specialist would have as much information as possible. I didn’t want an appointment with a lot of guessing. You know the ones: “Well, if we knew for sure about X result, then we could move forward. We’ll have to wait and see when that comes back.” So the waiting was draining, but at least I had an appointment and insurance coverage. I also put myself on the wait list to see others specialists at other locations. One had a year wait and the other was indefinite due to other reasons. Specialty Center sent an information packet with my appointment time, clinic address, area map, instructions for appointment day and a list of area hotels. Travel I chose to drive as flying is stressful for me. I also estimated costs and it was a wash. A major factor for me is my inability to eat out. I have a lot of food sensitivities and find that most restaurants don’t understand or comply. It is much easier to prep and take my own food in the car versus in a plane. I had also planned to take my dog and that played in to the choice as well. (Long story, he was elderly, he was a big comfort for me, and we’ve traveled a lot together. He passed away before my appointment.) Reminders Specialty Center called with automated appointment reminders about one week before and the evening before my appointment. They say to bring current meds and supplements. All they wanted from me was a list of meds/supplements with strengths and dosages. I didn’t have to take the actual bottles – I did, but I had a list and that was all they needed. Day of Appointment The directions they sent were very clear. There was a lot of construction in the area and the traffic congestion was high. I had a 1:45 pm appointment and I left the hotel at 10:30am – either wait in the hotel or at the office and I wanted to make sure I didn’t get lost or stuck in traffic. Meds/food – they sent me information as to which medications to stop and when and when to stop food/water before my appointment time. For me, it was 3 hours before for food/water. Check in #1– You just give them your name and they tell you to have a seat in the waiting area. Check in #2 – I was called up to the desk within 10 min of the first check in. They did the standard medical check in stuff – review address, emergency contact, pay co-pay, sign forms. They were very nice and I didn’t feel rushed. I needed my ID and insurance card. They also asked for an email – they send you info on how to get signed up for the patient portal to that email. I asked and was told that they see autonomic patients from less than 9 yrs old to over 70 yrs old. Waiting area – It’s a big area. They have free wifi and there are some outlets around for power. I found it fairly warm; I expected it to be hospital freezing. I was glad that I had layers – I would have been sweltering if I had worn what I expected to need for the temperature outside. I used my extra time to sign up for the portal while I was there. Autonomic Function Testing – They had a cancellation and so took me back nearly an hour before my appointment. I told the tech about when I last ate, and the timing worked out for me. I was taken to a smallish room with a desk and a tilt table. This room was much cooler than the waiting area. There is a bathroom nearby and I was allowed to use it before the testing. I laid down on the tilt table and the tech placed all the equipment – wrist cuff and finger cuff on one side, blood pressure cuff on other, and EKG leads. They did a series of tests and the tech explained what we’d be doing and how long it would take. We would redo each test as many times as needed to get good results. First test was a breathing test – 5 seconds in, 5 seconds out for 1.5 min total. Then a Valsalva – breathe into a tube to raise ball to 40mmHg for 15 seconds two times. Then the tilt. The tech would ask for symptoms, but I just kept a running description as things changed. The testing took about 45 minutes; I didn’t have to repeat any of the tests. I didn’t ask the tech how it went or what results I had – I’ve learned from so many other situations that they can’t tell you. Doctor appointment – I sat in the waiting area for less than an hour before I was called. For me, it was about 20 minutes before my scheduled time. The tech had told me that the patient who cancelled was not seeing the same doctor as I was so I wouldn’t be able to take that appointment too. The first nurse did basic medical appointment stuff – check blood pressure, ask some basic history questions. Reviewed allergies to medications, got the info for the pharmacy I use. Doctor’s nurse then came in not long afterward. We were together about 25 minutes. Nurse asked “what brings you here” and typed while I told the summary of my story regarding POTS. They listened to my heart, lungs, gut sounds and did a quick Beighton screen. I waited maybe 15 minutes before Doctor and Nurse came back in together. I found this part really disappointing. I had read so many patient stories that they felt heard and were able to ask as many questions as they had and that they felt listed to and understood like they hadn’t at any pother doctor’s appointment. That didn’t happen for me. The basic summary is that Doctor presumes that I had a pain episode and got de-conditioned and then got POTS. This is no way matches my history. I told Doctor that, but neither Doctor’s demeanor nor information changed. My basic story is that I’ve always had orthostatic symptoms – this is all I’ve known. I have (and shared with both nurses) stories from at least age 5 on of weirdo stuff in my life that didn’t happen to anyone else and I now understand to be from POTS. I used to hike in the Rockies and have a career that is basically always standing. I told them how I was swimming an hour a day until the day I vacuumed my car and then had a huge pain flare. I told them how I do tai chi regularly. I told them how my POTS symptoms predate the pain and I’m hoping that the pain is a POTS related issue because all the treatment for fibromyalgia doesn’t work for me. None of this mattered. Doctor tried to get up to go less than 10 minutes into my appointment. I didn’t wait 6 months and drive across multiple states for that so I asked more questions. Doctor stayed but it was pointless. Their mind was made up and that was it. The only other info I got was an admission that they don’t really deal with pain. My take away is that they (and I don’t know if this is just this doctor or this Specialty Center in general) deal with tachycardia and that’s it. Any of the other vast and varied symptoms associated with POTS and dysautonomia are off their radar. I did not feel heard. I did not feel cared about. I felt as though my story was mangled and mishandled to fit their preconceived mold that I was deconditioned and that caused the POTS and I need meds to control the tachycardia so that I can exercise and I’ll be as good as they can get me. Honestly, I did not expect this. I thought that the POTS-as-deconditioning was an older idea, or at least not the only cause. I thought that Specialty Center would deal with me an individual. Oh yeah, there were tears. I had pages of questions. I had pages of other information. All this was pointless in the face of someone who isn’t listening. Doctor left, Nurse stayed to go over discharge instructions. I did what I could in my post TTT, crest fallen, disbelieving state to plead for some sanity, some reason. What I got from Nurse was that I should get counseling to help me with my anxiety. So much for POTS patients having anxiety as a symptom of POTS and not any higher prevalence than the general population. Really? Is counseling going to help me deal with extra catecholamines floating around my bloodstream each time I stand and my body freaks out because my brain isn’t getting enough blood? So now Nurse is a lost cause too and I just did what I had to do to be done. There was no point in fighting for a cause that they couldn’t even see. The only bit of potentially helpful information was regarding the dose of propranolol that I take. I share this just as specific info for me and not as a recommendation for anyone else – though it may be worth discussing with your doctor. I was taking propranolol 10mg three times a day. Their recommendation was to increase that to 20mg an hour before exercise in a hope that it would control tachycardia, allow my heart to fill, and therefore pump more efficiently and then I could exercise, no longer be deconditioned and this condition that I’ve had my whole life will go away. Nurse was looking over my meds and asked what Trioral was. I had some with me – to put in water after my appointment to help myself feel better. Honestly, I’m surprised that these autonomic specialists aren’t familiar with the most common salt supplements. Or am I in the wrong and Trioral isn’t commonly known? I left her a packet so hopefully they will try it and recommend it to other patients. They also recommended that I talk with my PCP about Provigil for brain fog. I don’t know what to think about this. Again, I thought the brain fog was a symptom of POTS. If my autonomic system was not disordered, then this wouldn’t be happening. Lastly, they recommended an abdominal binder for abdominal blood pooling; via an abdominal binder or Spanx. Nurse commented that they don’t see much pooling in the legs and therefore don’t recommend full compression hose. Summary I’m still processing. I have to say that I’m glad I went because at least now I can say, “Yes, I have POTS diagnosed by Specialty Center” but that’s about it. I guess I knew enough not to get my hopes up and that this was likely to be like every other encounter with a medical care provider. But I couldn’t. I wanted to be understood. I wanted to feel heard and not passed off as another annoying patient who doesn’t know anything. But it happened that way again. I asked for help – “where do I go from here” and got no reply. Well, unless you count a recommendation to get counseling. I thought Specialty Center would be beyond the “it’s all in your head” diagnosis. So, my fellow POTSies, there you have a recent visit to a Specialty Center. I hope that helps someone. I hope that others have better experiences.
  7. Yet another quirk that has a cause! I’ve never had a thirst drive, unless of course I had eaten something super salty. I always figured I got enough water from my food. I used to drink maybe one glass of water per day. Of course that’s different now. I didn’t understand when others went crazy for drinks or carried water all the time. I tried carrying water, but I never drank it. Oddly, I’ve had an excessive amount of saliva lifelong too. Dentist always comment on this.
  8. I can’t comment on the autism piece, but I’ve had POTS nearly all my life and I get anxiety and panic attacks which I associate with it. Is it possible for him to have something like Xanax to help him get through this? It’s been a huge help for me. I second the suggestions to up water and salt intake (of course if his doctor oks this). I found Trioral ORS worked better for me than salting my food and drinking plain water. To add to the complexity, check into mast cell activation syndrome (MCAS). This may be playing a part as well. It is so much more than hives and anaphylaxis. Mast cells are in every tissue and are in communication with nerves - so it can cause pain, GI issues, headaches, all kinds of symptoms. Look up Dr Lawrence Afrin online. I find this article helpful in describing the array of symptoms with dysautonomia (it includes mood swings): https://www.medicalnewstoday.com/articles/76785.php Hope that you find some help for both your son and your family.
  9. Have you looked into mast cell activation syndrome? I’ve done reading on MCAS and there is a connection with IC. May be another avenue for finding relief. Some of the first line meds are OTC - of course you should check with your doctor before adding new meds - but they’re accessible. Here is just the first thing that came up googling MCAS and IC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4893522/ I don’t have IC, but I am suspected of having MCAS and have had significant help with adding both H1 and H2 antihistamines. The first thing I noticed was an ability to move around the house more like I used to - as in not exhausted just walking from room to room to do basic home life things. We’re all different, but it seems like something to check on for some relief for your IC symptoms. hope you find the help that you need and find some relief and ease.
  10. I'm new to a POTS diagnosis - I have just over one month of therapeutic level salt and water intake via just salt on food and plain water. I've noticed an improvement - mostly when I had to stop them for a test. I just received some Trioral ORS yesterday, and WOW, what a difference. I feel like there is hope of me being me again! I looked into making ORS at home, but then opted for the pre-made version for a trial. What I'd like feedback on is: 1. Does anyone else make the WHO recipe at home and do you find it convenient, effective? 2. Has anyone used Trioral long term and does the effect change over time? 3. Will someone double check my formula and cost per 1000 ml dose (or 1 serving), please? WHO recipe for ORS: NaCl 2.6g, KCl 1.5g, Trisodium citrate 2.9g, dextrose 13.5g I did a bit of shopping around and selected these items from Amazon: Sodium citrate 16oz/454g $10.52; 454g / 2.9g = 156 servings per container $10.52 / 156 = 6.7 cents per serving Potassium Chloride 1 kg $16.96; 1000g / 1.5g = 666 servings 16.96 / 666 = 2.5 cents per serving Dextrose 32oz/907g $9.85; 907g / 13.5g = 67 servings 9.85 / 67 = 14.7 cents per serving Redmond Real Salt 26oz/737g $9.99 (I have a sensitivity to Himalayan pink salt); NaCl is 39% Na and 61% Cl, while Redmond is a bit less at 38%Na (although they have conflicting info on the label) 737g / 2.8g = 263 servings 9.99 / 263 = 4 cents per serving 6.7 + 2.5 + 14.7 + 4 = 27.9 cents per 1L dose/serving; Trioral purchased in 100ct pack via Amazon is 40 cents each dose Honestly, I'm surprised that there isn't a bigger cost savings from making them yourself. I'm thinking it isn't worth the effort to make them. Wondering what others have found. Thanks!
  11. I have leg pain also. The sensation and intensity vary - can be burning feet, only in thighs, sharp pain, dull pain, shifting in location or set. Sometimes it’s worse at night and others worse after movement. Triggers seem to vary as well - foods, exertion, weather changes. I was originally diagnosed with fibromyalgia and have had this pain all over my body for years. It seems to be most often and most intensely in my legs for the past several months. I don’t have any grand treatment ideas for you, unfortunately. I haven’t found anything that touches the pain except for time and rest. Ive tried gabapentin, lyrica, doxepin, tylenol 3 with codeine, and pred and none touched the pain. I tried low dose naltrexone and that did help but only seemed to work for a month. I’ve got a long history of neck issues and am just looking into the CCI/AAI info to see if that is part of my picture as well. Makes sense that compression on the spinal cord can cause all kinds of symptoms, one being pain (plus the leg nerves are closer to the periphery of the spinal cord and can be affected first by compression). Anything that you can identify that has changed for you? Medication, exertion level, exercises, more bed-ridden days? Certainly get it checked out with your doctor as it may not be Dysautonomia related and may respond to treatment. Hope others can provide more insight.
  12. That’s great news! Congratulations! I get that the commute is a downnside. I also see it as a do-able hurdle to cross to get good care. Not to say others have it worse, but some people have to travel out of state to get what they need. I hope that your appointment isn’t too long a wait and that it is what you need to get you on your way to feeling as best as you can. I’ll advocate for the doc and suggest that you organize your info and be frank about what you are thinking. They’re just people and that doctorate degree doesn’t come with mind reading capabilities nor a crystal ball. Make the most out of your good fortune! Wishing you all the best!
  13. Curious why you haven’t mentioned POTS. My impression is that it’s not a common diagnosis and many doctors either don’t know about it or don’t believe it’s a real condition. If he doesn’t know about it, then he’ll never get there for a diagnosis. Seems to me if you’re pretty sure you’ve got something, then you’re only hurting yourself by not advocating for yourself. I have a family member who goes to the doctor with vague symptoms and waits to be told what it is. That’s been going on for 30 yrs. If I were you, I’d test myself at a regular interval and go in armed with data and peer-reviewed articles. It worked for me. I’m so much better just two weeks after confirming POTS. Are you able to change doctors easily? To me, it sounds like you’re overdue for a change up. Please keep us posted as to how you are and how this is progressing.
  14. I agree that finding the right medical provider is key. On your path to finding that person, keep track (as you are) of specific symptoms and associated information. My experience is similar to yours. I did a lot of reading, figured out what I had, and then the doctor agreed with me. I did the NASA ten minute lean test (directions at Bateman Horne Center) multiple times. I printed up neat charts of my numbers. I went into the appt saying ‘I believe I have POTS’ and handed over the charts. You could succinctly list your primary symptoms. I’d take a peer reviewed article or two - particular to hyper POTS if you’re pretty certain that’s your particular experience. Most medical care is not set up for much else. There isn’t the ferreting out of what is causing unusual or transitory symptoms. There’s no Sherlock Holmes in a white coat eager to solve your case. I say make it blantant and easy. The doctor can then confirm or refer. If you can get a doctor to confirm the diagnosis, then there are specialty referral institutions where you might get more specific interest in the details of what happens for you. I think focus on the objective data - if your BP/HR tell the story, then let them lead. Use your other symptoms as supporting evidence. I think doctors are more likely to blow off subjective reporting. I hope that you find some medical support and get the care that you need. All the best to you.
  15. @Hutch thank you for posting this! EECP is new to me, grateful to know about it. From a brief cruise around a few journal articles and some Cleveland Clinic info, it makes sense that this device would have some benefit for POTS. My take is that it augements the cardiac response by increasing small vessels. If the heart had been decompensated and shrunk, then stimulation of new vessels might do two things: help the heart to resume ‘normal’ size as well as help it to respond to ANS demands when upright. This increase in heart function may then feedback negatively on the sympathetic overdrive that happens with lack of blood to brain/heart/lungs on standing. Looks like it’s quite a procedure - 1-2 hrs/day, 5 days a week for 7 weeks. I would hope that compression stockings and graded exercise are doing similar things for those of us without access to this equipment. Likely a slower and less efficient means to the same end. I wish you luck in your search to try this yourself. I have doubts that you’ll find someone who can legally treat you if you don’t have refractory angina (as that seems to be the main use). But maybe you could entice a researcher to do more with it for POTS patients and then be part of the study cohort. I’d like to know when you find out more information. Please post updates!
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