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ks42

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About ks42

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    Phoenix, AZ

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  1. To add to MomtoGuiliana's explanation, some people also have genetic mutations (MTHFR) which make it impossible for them to break down the regular (cyano) form of B12, as their bodies lack the ability to go through the processing step of methylating the B12 in order to utilize it. This causes an excess to build up in the blood, but the patient also can become deficient from what I understand (my sister has the mutation). Same with folate. Methyl B12 and methyl folate are already methylated and can be utilized by someone with this mutation. Apparently, the mutation is pretty common so a lot of supplement formulas are switching to the methyl versions of these vitamins as a default. @Bluebonnet - I'm not able to take any B vitamins when my adrenaline issues are out of control (I can get adrenaline surges - big ones - that are present 75% of the time in a 24 hour period). When that's going on, any B vitamin, especially the methyl versions, are too stimulating and can make the adrenaline surges and insomnia worse. However, if I'm in a period where the surges aren't the dominant symptom, they are amazingly helpful. I was taking both during a two year period where I was almost completely functional again. If I started to feel POTSy during the day, I'd take an extra dose (I never took large amounts at a time, so I was micro-dosing them anyway), and I'd instantly feel better. I had a comprehensive metabolic profile test done when I first got sick, though, and it showed all kinds of B vitamin levels were messed up, including folate, so that's likely why it helped so much. I started with 1/8 to 1/4 of the recommended dose, though, and found I didn't really have to go much higher than that at any point to feel really good effects from them.
  2. My doctor at Mayo told me that when mast cell is suspected, he always uses a combo of three different drugs: H1 blockers, H2 blockers (both of which it looks like you're on) and a mast cell stabilizer. He says in his experience, often all 3 are necessary to really control mast cell issues. He liked to prescribe Cromolyn oral (it comes in ampules that you add to water and drink), but his NP also told me I could try Quercetin as well (it's available OTC as a supplement). I know Ketotifen is also used as a mast cell stabilizer pretty effectively, but not sure we can get the oral version of it in the U.S.
  3. One easy thing to check would be to find out whether you have the genetic MTHFR mutation. My sister and I both have it (I only have one copy, so it doesn't affect me, but my sister has two, so it does affect her). Anyway, it makes you unable to properly utilize normal forms of B12, so B12 just builds up in your system, causing high B12 levels but B12 deficiency at the same time (and to my knowledge sometimes high folate levels). It's treated by taking special vitamin B12 and folate supplements that your body can actually use (they have to be methylated). My sister had extremely high B12 levels because of this, yet she was technically deficient in B12 because her body wasn't utilizing it, it was just building up and sitting in her bloodstream. So she had symptoms of a severe vitamin B deficiency along with the high levels. Any doctor can order the MTHFR test (mine did, and insurance covered no problem), but you can also do it through 23andme, and then run your raw data through something like Genetic Genie - but that's expensive, so I would recommend going through your doc if you can. There can also be all sorts of other symptoms that come along with having the MTHFR mutation as well that can make you systemically sick, as well. I know there are a ton of other possibilities as well for high vitamin B12 levels, but just wanted to throw that out there.
  4. While I don't typically fly (I'm bedridden anyway so can't do much) I have friends with POTS who swear compression garments are incredibly helpful when flying, as they prevent the blood pooling that happens, keeping your HR lower (and can help alleviate leg swelling in flight too). My other question is, can your doctor give you a prescription for a beta blocker to be taken as needed? I can't use beta blockers regularly for various reasons, one being that if I'm at home and relaxed, my resting HR can be too low on its own. However, for awhile my doctor did give me a prescription for Metoprolol (which has one of the shorter half lives) to take just during certain situations, like MRIs, trips, etc. I was approved to take it if my HR hit 100 or higher, and if I was likely to be in a situation where it would stay like that for a little while. I only needed half a pill (12.5mg) to be effective. I found at such low doses it didn't affect my BP. In addition to immediate release Metoprolol, think Pindolol and Propranolol (short acting/immediate release) also have short half-lives and probably would be out of your system either by the time you finished your flight or shortly after. Also not sure if it's possible, but can you get IV fluids before the flight? I've heard that helps immensely.
  5. Yes, it sounds like we do. HyperPOTS means "hyperadrenergic" which technically means the POTS is either caused by or accompanied by an increase in adrenaline levels (norepinephrine and/or epinephrine). Most people with HyperPOTS also have orthostatic hypertension, so blood pressure that goes up too high when standing, rather than blood pressure that drops. In order to test for HyperPOTs, they do blood draws to measure adrenaline levels while you're lying down and while standing. These patients still have the typical heart rate increase of at least 30bpm upon standing as well. Sorry - I'll translate the info in my signature: I tested positive for HyperPOTS in 2014. Most of the time, though, I don't have the increase in heart rate or blood pressure on standing that is characteristic of POTS, so I don't technically meet the criteria to be considered to have POTS anymore. This may be due to IV fluids and meds, or may be for some other reason. "Disabling hyperadenergic storms": I suffer hyperadrenergic storms which are where your body all of a sudden spits out a ton of adrenaline for no good reason, and it raises your heart rate and blood pressure like crazy, as well as causing a whole bunch of other unpleasant symptoms. The big ones usually require treatment in the ER. The only difference is, my storms aren't related to position. They can happen anytime - sitting, lying down, standing, sleeping, etc. "Current dx just dysautonomia": My current diagnosis is just dysautonomia. My heart rate, blood pressure, and valsalva testing are abnormal, so there is definitely some kind of autonomic dysfuction, but we don't know what kind or what's causing it. "Being re-evaluated for pheo" means that they think my autonomic dysfunction might be caused by a tumor called pheochromocytoma that produces excessive adrenaline, but they aren't sure yet. It's going to take awhile to eliminate that possibility. "Positive for lyme & co." - I've had lyme and co-infections (Babesia, bartonella, ehrlichia) in the past, and might still have them. "Positive for reactivated EBV" - EBV stands for Epstein Barr virus. My test results show it's been reactivated, so is currently active in my system. Some doctors believe that can be a big problem, others believe it shouldn't cause any symptoms. I've also been exposed to mold which some believe can also cause autonomic dysfunction / POTS.
  6. Yes to every single one of these except #4 and #11. And I do have HyperPOTS. They're looking for an underlying endocrine issue right now, but if that's not it, my cause is most likely Lyme disease, like you. To give you some encouragement, I got disability with just a POTS dx, and I got it the first time I applied - I think it was a total of about 6-9 months from the time I applied to the time I received benefits. However, I hired a lawyer the first time through. This meant that they got a percentage of my back pay, but it was totally worth it. My lawyer was amazing, and I think had it not been for him, I wouldn't have won the first time through. I also had an amazing PCP who filled out a functional assessment for me (even though they didn't ask for it, it was really helpful for them to have on file and I think made a big difference). It's true that there is a list of approved diagnoses on the SSD list that basically receive automatic disability, no questions asked. It's a common misconception that if someone doesn't have one of these diseases, then disability is impossible. What happens is, if you don't have one of the diseases on their list, then you're given disability based upon your symptoms and how they affect your everyday life, as well as whether there are medications you can take that can enable you to work. So your ability to get disability just depends on how well documented your illness is (and how it affects your life) in medical records, etc., documentation that you have tried and failed the standard medications used to treat it, or that the meds haven't given you back enough functionality to work, things like that.
  7. @dizzytizzy You're very welcome. Yes, I agree with you that the ethical component seems to be missing these days in a lot of areas. I would like to think if I were a doctor who had a program that was actually curing people of this horrific thing, I'd certainly need to make money, but might at least try a sliding scale fee schedule based on income to make sure those who can't afford it could get access as well. Then again, running an office is expensive, so... who knows what might actually be possible or not? I've heard Cleveland is fantastic. I get it - it's incredibly frustrating not to know what caused it. In my case, we kind of need to find the cause, because that's probably what will allow us to treat this properly, as I've really never responded to typical POTS meds (and the things that make me feel better should in theory make POTS worse). If Cleveland program is like Mayo, though, then they might do a ton of bloodwork and other testing (they did autoimmune, paraneoplastic, some endocrine, mast cell, and mitochondrial panels on me when I went in for the complete autonomic testing at Mayo. So there's a chance you can discover a cause that way. I unfortunately didn't, but other people sometimes do). I'll PM you the info on the adrenal yoga program.
  8. I honestly have found that whatever specialty you see, whether it be a neurologist or cardiologist, they need to specialize or at least have some knowledge of POTS / autonomic disorders. If you can't find one near you on the DINET physician list, I've had luck by calling offices and asking if they've ever treated POTS, and how many POTS patients they have currently. Otherwise, as other people have said, general neurologists often don't know what POTS is or how to treat it. However, I've run across the same problem with general cardiologists. I've seen some of the best general cardios in the U.S. who had no idea how to diagnose and treat POTS, since they mainly focus on heart disease, heart failure, etc (though EPs focus on heart rhythm and so they can be a bit more helpful even if not totally POTS knowledgable). They basically told me I had anxiety and/or pushed me off on other specialties. However, by definition, POTS is a disorder of the autonomic nervous system, so it has been my experience that a neurologist who specializes in POTS or autonomic dysfunction often can and will do more than the other types of specialties. Besides tilt table tests, a lot of them will do other tests to look for small fiber neuropathy, other defects in the autonomic nervous system (valsalva, cold pressor tests, breathing tests, QSART, etc) and usually have more medications in their arsenal that they're willing to play with. For example, I have a cardiologist that specializes in POTS and a neurologist that specializes in autonomic disorders; the cardiologist is amazing, but she needs me to also work with the neuro because she can't order IVIG for an autoimmune cause, won't prescribe certain treatments like Mestinon because it's designed for neuromuscular purposes and it's outside her scope, etc. So if I had to choose one, I'd go with the autonomic neurologist. Unless I could see a doctor like Dr. Grubb, of course. He's an autonomic cardiologist who will test for and prescribe just about everything, from what I understand. So my first choice would be to go with Dr. Grubb. Or maybe Dr. Raj. After that, an autonomic neuro. Dr. Blitshteyn, who I think was mentioned by someone else above, is an AMAZING autonomic neuro, in my opinion. I love my phone consults with her - super helpful, you just need a doctor willing to follow her prescribed treatment plan since she can't write scripts or order tests if she doesn't see you in her office physically. EDIT: I noticed you're in Canada. Since I don't know where in Canada, I'm assuming the answer is no, but are you within traveling distance of Dr. Raj in Alberta? He used to work on POTS here at Vanderbilt and is supposedly amazing. He specializes in autonomic disorders / POTS.
  9. @AB+72Mayo Clinic in Arizona. It was offered to me as part of my treatment for POTS. They have biofeedback specialists & equipment there. I know that there is a program in the Minnesota one for kids that also uses some biofeedback as a way to help kids manage POTS and/or chronic pain, but not sure about adults (I've never been to that location). @WinterSown No, this biofeedback in this case isn't PT. It's similar to (and is sometimes used interchangeably with) neurofeedback, if you've ever heard of that, although the two are subtly different. It was developed as a way to teach your body to voluntarily control some involuntary autonomic functions, like heart rate, bp, breathing. It was originally developed for psychiatric purposes (to help with PTSD, etc) but is now used in physical conditions as well. It's what they do at the POTS treatment center in Texas, if you've ever heard of that. They hook you up to a machine that reads HR, RR, and BP, and try to teach you to physically and mentally control it when it gets out of range. Mostly it's done through deep breathing or specific breathing patterns. Once you start to "accidentally" control your HR by something you've done (deep breathing) or thought about, etc, you see your HR drop on the screen and subconsciously your mind starts to figure out what actions it needs to take to control your heart rate, so it becomes easier and easier with less effort involved, until it's almost (but not quite) subconscious. There's a little more to the machinery they use than what I'm explaining, but I'd look up HeartMath (that's the portable one my practitioners have had me use at home) if you want more info. The equipment used in the office is much more sophisticated, however. This thread has a more complete explanation of what it is (especially with regard to POTS) than what I've given: https://www.dinet.org/forums/topic/19178-biofeedback-as-a-treatment-option/?tab=comments#comment-176031 It works really well for anxiety and PTSD, from what I've heard. I know Mayo has had some successes with it for POTS, too, but they warned me that it's more hit or miss with POTS, and is used more as a coping mechanism / adjunctive treatment - definitely not a cure. But if any of your POTS symptoms are triggered by stress or anxiety, I'm guessing it would probably be really helpful for that. It didn't work for me at all because my symptoms are just too severe, and they're driven by pretty hefty (and frequent) releases of adrenaline that no amount of mind-body training can seem to control. Oddly, I find more benefit from a specific adrenal yoga program that's designed to activate the parasympathetic nervous system, balance breathing and HR, and reduce overactivity of the sympathetic, reducing adrenal output of adrenaline.
  10. I've actually looked into this a few times, as he is actually really close to where I live. He's been around here for a little awhile - I believe his practice popped up somewhere between 2010 and 2013 (approximately). What I find intriguing (and possibly useful) about his approach: He was trained by a Portuguese Autonomic research facility, which has a slightly different take on autonomic disorders than we do, but is apparently well known (I looked into the actual facility he studied at) He believes in a slightly different mechanism for autonomic dysfunction (parasympathetic dysfunction and weakening of the sympathetic nervous system, as opposed to sympathetic hyperactivity and the other mechanisms current doctors support). Not sure if good or bad or helpful, but definitely interesting. He has different tests available than at major autonomic centers (transcranial doppler sonograms to measure blood flow to the brain, spectral analysis). He does vagus nerve stimulation (which they are currently studying somewhere now as a treatment for autonomic issues - I think maybe Vanderbilt or somewhere similar)? Personally, I think maybe it's great that he's using it, but I figure I might want to wait until the study results come out to see how vagus nerve stimulation works overall before I pay for a stimulator myself. The reasons I have not yet made an appointment: I've been on the exact diet he suggests since I originally developed autonomic dysfunction 4 years ago, and have never had a diet heavy in Omega-6's anyway. I did well for awhile but not sure if due to diet or what. I crashed really badly despite staying on this diet this past Jan and am not able to crawl out of that hole, no matter how good and how anti-inflammatory my diet is (I'm bedridden again). So if this diet is the main portion of his protocol, then I'm unlikely to benefit from it too much more than I already have. His spectral analysis testing utilizes valsalva, deep breathing, and stand tests, exactly what I've already had done at Mayo, so I don't necessarily want to pay for a version of it again He uses biofeedback, which I've also been doing for the past 4 years - through private practitioners, through Mayo, at home, etc, and haven't seen any benefit He doesn't accept insurance. Everything is out of pocket, and his consults are incredibly expensive - they are actually more than what my Mayo specialist charges for an out of pocket visit, so it's a lot for me to handle financially. There's a bigwig, sort of famous naturopath here who does pretty amazing work and charges half of what he does for a very comprehensive 2.5 hour office visit that includes some testing. I also assume if I want to do additional testing he recommends (like the transcranial doppler, autonomic function testing, etc) that might be an additional out of pocket expense on top of the consult. Though I think you're right - he doesn't seem to be selling supplements and things, so that's good. Though I assume you'd have to pay for a vagus nerve stimulation device, which is probably pretty pricey. So just not sure I can afford it. Might be able to save for one visit, but then follow ups would be out of the question financially. When he first started, he accepted Medicare (which I have) but just opted out of that this year I'm still somewhat intrigued and, if I had the money, I'd probably at least go for one consult to see if he could find something different or recommend something that previous physicians haven't. However, since it's all out of pocket, I tend to be much more hesitant and skeptical. Also keep in mind - when I say things haven't worked for me - my doctors right now are re-considering the fact that my autonomic dysfunction might be due to something like an adrenal tumor or endocrine disease. If that's the case, what helps me / doesn't help me might be very different from what helps someone with a more primary / idiopathic case of POTS. Edit: Also, I do agree with WinterSown - the TM does make my brain go hmmmmmm......
  11. I've been told by numerous doctors that beta blockers, which are kind of a first line treatment for the tachycardia of POTS, can be contraindicated if you have mast cell activation as they can cause a mast cell reaction. I'm sure there are others - I've heard of people with mast cell needing to have meds specially compounded as they react to certain fillers in medications, etc. Can your mast cell specialist consult with your cardio or GP and help guide treatment? MCAS can be complex with regard to medication tolerance from what I understand. Also, does your cardio have special interest in, or knowledge of, POTS / autonomic disorders? At one point, I was treated by one of the best cardiologists at a world renowned teaching hospital who, as it turned out, actually was the worst doctor I ever had with regard to diagnosis and treatment of my POTS. Generally, unless they have a special interest or specialization in POTS / autonomic disorders, many cardiologists focus more on heart disease, coronary artery disease, heart failure, etc, and will often have very limited or zero knowledge of POTS & related disorders, since technically POTS is not a disorder of the heart (it's a neurological condition of the autonomic nervous system). Granted, I think most cardiologists will at least know what it is, and some cardiologists choose to focus on autonomic disorders (then that's a different story). I have, however, found that electrophysiologists, as a rule, tend to study POTS a bit more in general, as they study heart rhythm (different tachycardias, etc) more than heart diseases, but still, not all of them are really terribly POTS literate. So if your cardio isn't POTS literate (or is limited in POTS literacy), is it possible to call around (or use the DINET physician list) to find someone who regularly treats POTS and related disorders? Also, with someone who specializes in POTS, they're often well versed in MCAS and know what can / cannot be prescribed for these patients.
  12. Back when I was first diagnosed (4 years ago) my HR would come down when walking, as long as I was walking slowly and not exert myself. It wouldn't come down enough to make walking comfortable for me, but let's say my standing HR was 150, I'd start moving a little and it would drop down to maybe 110 or 120. If I was having a really good day, slow walking could sometimes even get my HR down to around 80-90. If I walked for too long, though, then the fatigue would cause my HR to skyrocket again. When I went to a major autonomic center for testing, it was explained to me that this does happen in POTS with some people, especially those for whom blood pooling is a big issue. When standing, the blood pools in the legs quite rapidly. When you start moving your leg muscles, be it doing counter maneuvers, walking, etc. it helps counteract the blood pooling and push the blood back up to the heart. That's why many of the counter maneuvers for POTS involve standing with legs crossed, tensing leg muscles, and so on, which can help send blood back to the heart, increase BP, and reduce tachycardia.
  13. Yes! I'm a stickler for lowest price options, so for non-perishables, we order a lot of things online from wherever we find them cheapest - I have a bunch of stuff set up for recurring delivery through Amazon Subscribe & Save. I also have reminders set to place regular orders for other things from places like WalMart, Costco (they both have free 2 day delivery in my area), etc. But for regular groceries (meat, dairy, bread, produce, etc) I just started using Instacart. I LOVE it. I actually found out that the membership fee was less than what we were spending on gas weekly to go pick up groceries, not to mention the saved time and saved spoons! I'm disabled enough that I can't drive myself and certainly can't shop, especially in Phoenix in the summer. So, my spouse has to do everything - work full time, clean the house, do the laundry, cook, grocery shop, take care of our menagerie (and occasionally our niece and nephew). So it's a LOT. Doing online ordering + grocery delivery has freed up time to do other things, plus it's a way I can actually take care of all the grocery shopping myself from my laptop (which makes me feel like I'm finally contributing something to the household!!).
  14. Yes, I experience shakes/shivers uncontrollably when I get surges. The nice thing for me, though, is that I get them toward the end of a surge, when things are going back to normal like @Jessica_ mentioned. So sometimes I'm actually thankful when they start, because I know it's going to be over soon. @rgarton - like you, mine can last six hours or more. The smaller ones may only be 30 minutes to a couple hours, but the larger ones can be longer than 6 hours - I had one that lasted almost 24 hours (maybe a little more) so I have to treat them with benzodiazepines as soon as they start.
  15. Have you been tested for, or talked with your doctor about, gastroparesis? It's common in people with autonomic disorders and the symptoms are similar to what you're describing. My gastro told me the symptoms can wax and wane in some people, or be worse at certain times. They have to do a motility test / nuclear scan to test for it (it's not bad). But if that's what it is, it can be treated with either a special diet or medication (or both). Before I was able to get testing and they suspected gastroparesis, my doctor had me do a trial gastroparesis diet for about 2 weeks to see if symptoms got better. It was basically a super low fiber, low fat diet. Otherwise, I second what others have said about patients with POTS and tachycardia after meals due to blood pooling in the gut (I get it with some meals, not others, and I didn't actually turn out to have gastroparesis).
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