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About brainchild

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  1. 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.
  2. 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.
  3. 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.
  4. 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!
  5. 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.
  6. 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!
  7. 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.
  8. 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.
  9. @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!
  10. @MeganMN not to sound like your doctor, but ‘that is so interesting!’ I’d love to hear how this progresses - do you keep getting improvements? Do they last? Does it flare anything for you? From a mechanistic view, the body is one big stimulus-response machine. Our brain hangs out in a dark closet (the skull) and never sees or hears or touches anything. It only knows what is going on because it has input devices that translate signals so it can understand. So it makes sense that body manipulations (osteopathy, chiro, acupuncture, massage, physical therapy etc) can make a positive impact. Please keep us updated!
  11. Hello @JimL, Welcome and empathy for you feeling so poorly and being frustrated. I’m new here too, so I’ll share what has helped me. Once I was confident that I had POTS, I read a ton (research articles, articles by organizations, forum posts). I started with the recommendations that were common, including increased salt and water intake, elevated the head of my bed, compression stockings, smaller meals, supine exercises, plus a few more minor changes specific to my worst symptoms. I noticed an improvement pretty quickly; not gone, but better management. I’m still in the early phase, but I was concerned how I would be able to keep working as I can’t plan ahead or cognitively function up to par. I can see how life can be more magaeable. Again, I’m fresh into treatment, so I don’t know how often flares will disrupt this. I found doing the stand test at home caused my symptoms to flare. You may be having an increase in symptoms since the tilt test was recent. Can you get a copy of the results of the tilt test? From what I understand, people either have POTS or orthostatic hypotension, but not both. Your heart rate increase on standing and your constellation of symptoms do sound like they match POTS. But you need to have more information and be cautious with diagnosing yourself. From what I read, most doctors know nothing about POTS. I had one doctor tell me ‘well your heart rate can go to 120 just running to your car to get something.’ He had no idea what I was talking about. My cardiologist is aware, but has seen less than 5 POTS patients. If I were you, I’d review the numbers from the tilt table test, compare that to scientific articles on POTS and OH and then search out a doctor who knows a little something about it. I’ve seen it commented a number of times that an open minded and willing PCP is a better ally than a specialist who dismisses you. Once you have confidence that you have POTS, then there is quite a bit you can do for yourself - without a prescription. I don’t have the gastro symptoms, so I can’t offer much there. From my experience and understanding from reading, calming the whole autonomic nervous system seems to be the root that then helps to alleviate all the branch symptoms (maybe not completely resolve them, but goes a long way to controlling them). So I think anything you can do ought to help the whole picture to calm down and for you to be more functional and less symptomatic. I started with low dose propranolol and I truly believe that it helped with my panic mind set. I, too, was freaking out about how I was going to be able to function in life and where this was going to end up and just generally catastrophizing everything. It seemed logical at the time. But with a short time (as in less than 2 weeks) of doing as much management as I can at home and taking propranolol, my emotions are coming down off the ceiling. I still ramp up over loss of income, the constant outflow of money for doctors and self help items and life in the future, but it’s becoming a more normal stress response level. Can you go back to your previous level at work - give up the no title no pay promotion? Extra stress is not helpful. I’m not a physician and I can’t give medical advice. If I were in your position of likely having a flare post tilt table, I’d go easy with myself for a few days to a week or so. Let house projects wait. Get good sleep, eat well, do any exercising lying on your back and keep it at an easy level. Try to be upright but maybe do mostly sitting; limit time standing. Drink water. If ok for your health, increase salt. I barely used salt before POTS. Now I’m just at the level of the recommended amount for anyone - which is a huge amount in my mind. So those are things that nearly anyone could do without a doctor’s order. I am happy to help you however else I can. If you would like links to articles or guidance finding them, or any to any other info I’ve found, I’m happy to share. There are resources and benefits to be had. You’re doing the right thing by asking for help and being open to new information.
  12. Thank you @Pistol, @Lily, and @p8d for your responses and added information. I must have the wrong size hose because once the ankle cuff is over my foot, I don't have much of an issue getting them on. I don't feel the need for the silky sock nor the metal gadget to help me. I'll hopefully find out more tomorrow. I keep reading good things about Juzo and Sigvaris branded hose. I appreciate the info on dying as the beige is plain and we only have long pants season for a few weeks. My BP vacillates when I stand, but only about 10-15 points either side of what it was when I was lying down. It tends to go up those 10-15 beats, but fluctuates some. I have had bouts of low BP. I don't tend to take the measurement; I'll have to start doing that regularly. I was refused being a blood donor once because my BP was below 90. That was on a day when I was up and out and moving. It was also below 80 one time when I was in the hospital. So I've had health care personal with their machines record the low BPs. I looked over the charts I took to the cardiologist and going from (systolic) 94 to 104, 110 to 116, 108 to 115 are pretty typical changes. I don't believe that I have hypertension - I think 119 was the highest my BP has been. I think any hypotension that I have is transient and episodic. It certainly is not always present when I have symptoms as I had to stop several of the standing tests due to symptoms. Once I get properly fitted compression stockings, I'll have to recheck the values for the stand test to see if they change. Regarding the TTT: I chose this cardiologist's office specifically because they had a tilt table. Before my appt, I did lots of reading and what I found makes it sound like a TTT is not necessary for diagnosis, just meeting the criteria of the HR change without hypotension along with being symptomic while standing. I even found some info that reports the stand test to be superior to the TTT. My cardiologist didn't recommend the TTT and I didn't push it based on what I had read. For further diagnostics, he did order an echo and stress test - but those will cost me $1000 (cashola, no insurance coverage for these pricey tests). I'm hoping that I can use my money to gain information and get results in other ways. I'm waiting on a call from the cardiologist to discuss this point. I am also on a waiting list to see an autonomic specialist. I'm considering a consult with Dr. Blitshteyn as well.
  13. Thank you Pistol and p8d for the information and assistance! If I don’t have obvious pooling of blood, then how do I know if I have excessive vasoconstriction? I don’t have Raynaud’s. I do get amazingly cold hands and feet - and skin in general - even in hot weather. My insurance covers compression stockings 100%. Yay for that! I’d like to be as informed as possible and skip as much of the trial and error part as I can. I actually diagnosed myself and the cardiologist agreed. I did the NASA lean test a number of times at home, printed out neat charts of my results with accompanying info (on period or not, which arm used for BP cuff, symptoms that developed etc). His nurse did an EKG and the doc listened to my heart. They didn’t repeat any in clinic stand testing nor recommend a tilt table test. He did recommend a second opinion/visit with an autonomic specialist. Now that I’m aware of POTS, I’ve had symptoms since I was a toddler. I just thought I was a weird kid - who knew it was a real health issue? So maybe those symptoms played into his assurance of the diagnosis. He ordered a cardiac stress test with echo. I just found out today that I get to pay the full fare as I haven’t met my deductible - $1000+. Ouch! I’m hoping to get my PCP to do some kind of further diagnostics to help determine what’s going on with my ANS and therefore which treatments will be best for me. Thanks again for the help. So thankful to have a supportive and knowledgeable community!
  14. Hi RecipeForDisaster, I was prescribed LDN and took it for about one month. This was before I knew that I had POTS. I had been diagnosed with fibromyalgia and was doing tons of research because the typical FM drugs had no positive effects for me. I got the 4.5mg dose from a compounding pharmacy (I paid about $45 for 90days supply). I started right out on a whole tablet before bed I think I had one or two nights of extra weird dreams, but I have techno vivid dreams every night anyway. I think it took a week or two for the benefits to kick in. I had a good month of next to no pain. Yay! Then I got stressed out and the pain came back. I tried 1/2 and 1/4 doses of LDN. I even tried a whole dose again and had the worst pain night I have had in years. I spoke with the pharmacist at the compounding pharmacy. He wasn’t super helpful, though he tried to be. He said some people need 6mg or more to get effect. I couldn’t find info online about dosing - was I taking too much? Not enough? Had my body adapted and needed more? Had I flooded my opioid receptors and needed less? Anyway, I was done. I haven’t taken any more. I still get pain, but I’m hopeful that addressing the POTS will help to manage that as a root cause versus symptomatic treatment. Since you’ve been researching, you’ve probably learned that some people take teensy doses of LDN - as in 1 mg or less. Some say to start low and work up the dose. Maybe that was my mistake, who knows. So, if your doc has any experience, go with that. I say if you’re concerned about nightmares, start low and work up. I’m super sensitive to meds but I didn’t have any issues at all - beyond the 1-2 nights of extra weird dreams. I find that my musculoskeletal pain is triggered by foods. At least that was the primary trigger for years. So maybe look into that as a way to manage your pain also. I eliminated gluten, grains, nightshades, all processed foods and took vit K2 and n-acetyl-glucosamine to help with lectin sensitivity (I couldn’t tolerate ribose and the bladderwrack and other things that are recommended). That helped a ton! It was a huge challenge to eat that way, but I felt great! Now my main pain control mechanisms are knowing my limits and not pushing it, supine exercises, and a heating pad when I’m in bed (‘cause I’m tired of spending money and won’t buy a full heated blanket). Congrats on the smarty pants doc - hope you get things worked out with communication and follow ups.
  15. I am newly diagnosed with POTS. My cardiologist recommended compression stockings but his office won't prescribe them, lets the PCP do that. I basically diagnosed myself and took myself to the cardiologist before seeing my PCP. I have an appointment with PCP this coming week and hoping that he will script the compression stockings. I'm the 5th POTS patient my cardiologist has seen - not sure yet on the PCP end. So, I'm aiming to go to this appointment as prepared as possible, expecting that my doctor won't be familiar with POTS and I'll get better results if I make reasoned suggestions. I've got multiple articles printed out for him as resources, in case this is new for him. I purchased a pair of waist high, footless stockings from Amazon (Discount Surgical, Absolute Support) at 20-30mmHg. I have worn them for a few days and they're ok. Trouble is, we're heading into consistent 80 degree weather and these things are just torture in the heat. I don't have apparent blood pooling in my legs. I haven't had any further diagnostics to characterize my POTS - so all I know is that I meet the heart rate increase with symptoms criteria. My primary symptoms currently are: widespread pain (especially in the thigh), lightheadedness, cognitive impairments, poor sleep, exercise intolerance, post exertional malaise, wide swings in body temp, inappropriate sweating. I also have a history of low blood pressure - under 90 systolic. My main questions are: 1. Do people without blood pooling in their legs find benefit from wearing compression stockings? Is this a diagnostic marker for wearing them or do all POTS patients seem to benefit? The literature seems to suggest for all POTSies. 2. Has anyone tried and found benefit from compression shorts, waist high, knee high? As in, do I need the lower leg compression if I don't have blood pooling? I'm hoping that I'll get benefit from the support of the veins in my thighs and lower abdomen. I'm hoping to have a variety of effective options as we get 9 months of 90 degree weather here. I'm hoping to get some guidance - I understand that this likely varies per individual. 3. Any suggestion on fitting? I know that I will ideally have a professional fitting. I measured myself and bought according to the size chart but I can't tell if the ones I have are too big or too small. There is plenty of room in the ankle cuff and the waist (they lie flat on the skin, but there's tons of room to stretch) but the crotch keeps riding down. I don't think I'm too terribly odd a shape or proportion. 4. If my doctor is a newbie to POTS, any recommendation on 20-30mmgHg versus 30-40mmHg? I've seen both in the literature. In addition to the compression stockings, I've elevated the head of my bed, am eating 5.5gm salt/day, drinking 3L per day, am on low dose propranolol, doing supine cardio and strength training within my tolerance zone, I eat a whole foods diet, take magnesium and vit D. I started most of these at about the same time and am feeling some improvement - so difficult to tell if what I'm doing for compression is making an impact. I did search and read through several pages of postings on compression stockings. I appreciate any help! Thank you!
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