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Found 16 results

  1. Sorry so long - - but I feel like I need to give you my history first: I am now 52, but I first developed POTS at the age of 29 (but took me about 15 years to get a proper diagnosis). I was a young assistant professor at Vanderbilt University at that time, when I started having near-syncope episodes with tachycardia. I wonder now if the precursor to that was a "mystery" mono-like illness that caused severe sweating attacks some months earlier (but I also had 2 surgeries that year, and I also think there is possibly a genetic component as my mom/aunt had POTS-like symptoms, and my brother/uncle have Parkinsons, so I can’t be sure of the etiology). After ruling out pheochromocytoma, I was diagnosed as being idiopathically "hyperadrenergic" (this in the days before the term POTS came into use and before Vanderbilt became a prominant dysautonomia center - - I live in Colorado now). They put me on beta-blockers, which seemed to keep it at bay for a number of years, but I never fit the classical POTS picture because while I do get postural tachycardia, I also get postural hypertension or hypotension depending on the day, and often have nighttime attacks while supine. After I married, my husband made me seek more medical evaluation and finally I found a regular doctor and cardiologist who knew about dysautonomias and diagnosed POTS (they first thought NCS, but realized the beta-blockers had my BP/pulse too low, and I don’t get near-syncope episodes now that I’m off those). With increased fluids/Gatorade, extra sleep, avoiding triggers like alcohol, and an occasional clonazepam for night attacks, I have been managing my POTS pretty well for years. t married at 40, had a baby at 41, then we adopted two more girls from China (one as a baby and one as a 7 year old). I love my life and I don’t have time to be sick! But unfortunately I have taken a significant turn for the worse these last weeks and I'm starting to feel desperate for an answer. I had a rough last couple years during which my husband was laid off his job in the recession so decided to go back to graduate school full time, I started working my regular full time job plus some Saturdays at the hospital to make ends meet, my elderly parents who live down the street from us became needy (my Mom developed Alzheimer’s and other health problems and died last New Year’s day), and our older adopted daughter went through some tough behavioral adjustment issues (So, let's just say "massive stress" and lack of adequate sleep/rest these last couple years). My husband started a new job a few months ago, my daughters are all doing well now, and things were looking up when 6 weeks ago I had an anaphylactic reaction to an antibiotic I took for a bladder infection (never had anything like that happen before) and then I weirdly started reacting to foods I ate and having these flushing episodes with throat erythema/sometimes diarrhea, and also odd temporary symptoms like upper lip or limb numbness, and occasional sweating attacks (and I had, since developing the POTS, typically sweated less than normal). In retrospect, I realize I’ve been having these symptoms occasionally for awhile now, and also episodes of severe overall itching and turning bright red when skin was touched and sometimes a light scratch raising a welt, but I was chalking it all up to stress, POTS, and menopause and ignored them as they weren't severe enough things. But now the flushing, throat irritation when I eat, and my POTS cardio symptoms (and shortness of breath) are flaring full bore. After visiting regular doctor and allergist, we are contemplating that I may have hyperadrenergic POTS with mast cell activation disorder (MCAD), although my tryptase levels were normal and I’m still waiting on the 24 hour urine to rule out carcinoid tumor. Slightly elevated Ige, but no foods tested allergic. Docs are not familiar with MCAD but I did my own online research (got wonderful info from all of you here, thank you) and told them about it. Allergist is skeptical, but did read the Vandy article on hyperadrenergic POTS and MCAD and remains open-minded. He put me on H1 and H2 antihistimines (Atarax/hydroxyzine 3 a day and 2 at night, Benadryl about every 5-6 hours, Zantac 2 X/day) and clonazepam/Klonipin for heart rate/pulse whacking episodes. He also wants me to try Singulair (have the prescription but the FDA warning about mood changes and suicide scares me!) or prednisone low dose for a few days. I am not getting enough relief yet - - I have been felled by these past days, unable to drive my kids to school or go to my office, Feeling like I can't eat many foods without reactions (have lost 15 lbs in 6 weeks), having episodes of BP whacking from 220/150 to 90/60 and pulse changing from 40 to 120 (and when these episodes hit, I shake like a leaf and my thighs cramp until it passes in usually about 20 minutes). So I’m considering trying the Singulair or low-dose prednisone short term - - but not sure which is best. I am starting to feel desperate as I don’t want to take medical leave from work, but don’t know how I’m going to be able to go to the office with this happening, or even drive my kids to school! I have always been the one to keep my family going, especially since my husband travels in his new job, and my 6th, 5th, and 3rd graders need me. I am really struggling here - - can anyone offer advice? Do you think I should try to make an appointment to fly out to Vandy for evaluation? (as far as I can tell there’s noone in Colorado who understands POTS or MCAD really well or has the equipment to test ANS dysfunction). Should I try the Singulair - - has anyone had mood problems, depression on it? Or should I hit the prednisone first to see if I can get this under control before looking into longer-term meds? Do my symptoms indeed sound like MCAD and should I pursue the n-methyl histimine urine test to find out? I am looking to this forum for support and to learn from others as I deal with this new, awful wrinkle - - I'm determined not to let this slow me down but to be back to work as soon as I can, even though it appears I will need to cut my hours back to part time and make some changes to reduce stress if I'm going to avoid this happening again. Thanks for any advice you can offer! Carol
  2. I am trying to get a proper diagnosis for the crash I've had after living just fine with POTS for 20 years. I had an allergic reaction to an antibiotic, and since then have been reacting to foods with throat/stomach irritation and flushing and much worse POTS cardiac symptoms - - not being helped yet by antihistimines (have stopped the diarrhea but not the flushing, exhaustion, POTS flare). Here's my question - - Allergist called and said I had normal tryptase levels and didn't test allergic to any of the foods I seemed to be reacting to. He said all that was abnormal was a slightly elevated total IGe. So he says not mastocytosis, but I am arguing with him that I think it's MCAD underlying my hyperadrenergic POTS, which of course he knows nothing about (gave him the Vanderbilt researcher's article). Allergist still wants to chalk this up to a major allergic reaction that will subside with time - - if only he's right. But any of you with an MCAD diagnosis also get normal serum tryptase levels? What else can I do to convince the allergist to test for MCAD (and how to do this?) short of flying to one of the experts out of state (not easy for me to do)? Anyone know of someone in Colorado I could go to who would understand POTS and MCAD? Carol
  3. A lady I know whose kids have MCAD and POTS compiled some really interesting research, would love opinions on this (sorry if its already been discussed, I searched the forum and didnt find much): "OK, I wonder if I may be on to something here. At the very least, I’m learning a lot. Please post your thoughts. We know that Nitric Oxide levels tend to be high in POTS patients, as seen here: Cutaneous constitutive nitric oxide synthase activation in postural tachycardia syndrome with splanchnic hyperemia. http://www.ncbi.nlm....pubmed/21642500 (Splanchnic hyperemia is blood pooling in the stomach) Flow-mediated vasodilation and endothelium function in children with postural orthostatic tachycardia syndrome. http://www.ncbi.nlm....pubmed/20643249 Nitric Oxide also is shown to be increased in patients with migraines: Increased asymmetric dimethylarginine and nitric oxide levels in patients with migraine. http://www.ncbi.nlm....pubmed/21359872 Nitric oxide supersensitivity: A possible molecular mechanism of migraine pain. http://psycnet.apa.o.../1994-14066-001 And in patients with CFS/ME: Kindling and Oxidative Stress as Contributors to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome http://www.ncbi.nlm....les/PMC3022475/ (This is an excellent and thorough article that points to oxidative stress as a factor in autonomic function.) As well as Multiple Chemical Sensitivity: Elevated nitric oxide/peroxynitrite mechanism for the common etiology of multiple chemical sensitivity, chronic fatigue syndrome, and posttraumatic stress disorder. http://www.ncbi.nlm....pubmed/12000033 In fact, Nitric Oxide’s role is multifaceted, and an excessive amount can lead to neuronal injury: Nitric oxide in health and disease of the nervous system. http://www.ncbi.nlm..../pubmed/9246670 Neurobiology of nitric oxide. http://www.ncbi.nlm..../pubmed/8978984 Including Mitochondrial dysfunction: Nitric oxide-induced mitochondrial dysfunction: implications for neurodegeneration. http://www.ncbi.nlm....pubmed/12543245 Nitric oxide, mitochondria and neurological disease http://www.sciencedi...005272898001686 So what causes high levels of Nitric Oxide? Histamine? Quite possibly: Nitric oxide: a regulatory mediator of mast cell reactivity http://journals.lww....st_cell.47.aspx Nitric oxide accounts for histamine-induced increases in macromolecular extravasation http://ajpheart.phys...6/6/H2369.short Nitric Oxide and Histamine Induce Neuronal Excitability by Blocking Background Currents in Neuron MCC of Aplysia http://jn.physiology.../2/656.abstract Nitric oxide production in human endothelial cells stimulated by histamine requires Ca2+ influx http://www.ncbi.nlm....pdf/9480877.pdf"
  4. Wondering if anyone is willing to share experiences with Dr Castells or Dr Afrin, two of the most recommended MCAD experts on several websites. Has anyone seen both specialists? How much time did each spend with you and how long was the wait for an appointment? Any other details would be much appreciated. Thanks for your responses, Lyn
  5. I had my hopes all high for this visit today, and as always, was let down. They did not even stand me up the other week for my breathing test (he called it as CANS test), and I told the tech that I needed to be stood up to see my symptoms - but she didn't want me to faint, and said they would still see what they needed to while reclined with my feet up in my wheelchair (bull!). So all they saw was tachycardia. The PA and doc were annoyed, but I had to push for explanations and lab result numbers. They now have to re-do the test correctly, and will be drawing (at my instistance) standing catecholemine levels - norepi, dopamine, etc... to test for hyper POTS, finally. All my neuroendocrine stuff came out normal, they said I have NO peripheral neuropathy ( is that the same as SFN??? or the autonomic neuropathy?) based on this new Sudoscan test. They didn't think I needed a QSART, or any other tests until we do the CANS breathing test again. All my autoimmune tests came back negative (I'm waiting on the list of what was tested), my MRI (without contrast) was normal for structural abnormalities, which is good. I asked about having another MRI with the contrast and they said "lets see if you even have POTS first". REALLY??? ***!!!! I have had POTS for almost a decade - I offered to show it to them by just standing up. They saw it when I stood up last time, and my BP plummeting as well, but I guess they want the formal tests to show it, but they did not order a TTT. The only thing off was my Alkaline Phosphatase was high (I have to look that one up), and my insulin was a little high, but I had just eaten and am fat from being in bed for over a year now so they weren't concerned. They also told me to go see a GI doc ASAP, i have really bad right side pain, and upper chest pain on the right, and when he palpated my stomach I yelled when he pushed on that quadrant (I have been trying to ignore it). So now I have to go get checked for my gallbladder. Along with the searing pain in my esophagus and crazy stomach acid issues. Oh and my trypase was 4.6 - totally normal, and my methylhistamine was perfect they said, so they don't want to pursue MCAD, but are testing me for another autoimmune marker - C1 Astrase - have to look that one up too. I'm so pissed right now if I could muster the energy to move I would throw something. Sorry for REALLY long angry post. This doc is supposed to be one of the best neuro-endocrine docs in the counrty, and the only one with an autonomic lab in town, and I'm losing faith FAST. I'm glad I kept my appointment at Vandi.
  6. So, i keep reading each one...... i read ncs, and it sounds like me. I read dys and it sounds like me. I read mcad and it sounds like me. I read cfs and it sounds like me. BUT THEY ALL HAVE MOSTLY THE SAME SYMPTOMS!!!! Agh!!! Is there any read difference between these??? in mechanisms? in symptoms that could be told apart from the other??? thanks tennille
  7. Well, I am still ruminating on the appointment I had today with my new allergist/immunologist (2nd visit, to go over test results). Overall I think it went well. Here's the highlights: 1) She said that I had "60% higher than the upper limit of normal" levels of n-methyl histamine in the 24 hour urinalysis (which was taken during an episodic period). She said that this finding explains my symptoms. 2) She said that the prostaglandins and leukotrienes were not elevated. 3) She said that the tryptase, taken during the same general period as the n-methyl histamine, was not elevated 4) She said that the genetics did not reveal any abnormalities (negative for C-Kit mutation, etc.) (there were some other tests she mentioned but these are the ones I recall; basically everything was normal except for the histamine). So she said that the good news is that this indicates I do not have mastocytosis, myeloproliferative disorder or hematological disorder, but that the high histamine clearly indicates that something aberrant is going on. I asked if she thought that meant I had mast cell activation disorder and she confused me by commenting that since the tryptase wasn't high, she didn't think it was just mast cell degranulation but maybe that also the basophils and eosinophils were a factor (I need to do some reading to see what that means - - this is out of my knowledge zone... anyone else have thoughts on that? - - does it make sense?). She spent a great deal of time talking to me about how I'm doing on the new meds regimen, and what my concerns are. I told her that my main concern was that I couldn't eat very many foods without reactions and was still losing weight, and that I thought the missing ingredient in my meds regimen might be a mast cell blocker (as some of you here have told me). She agreed and wrote me a prescription for cromolyn sodium (Gastromcrom). She did NOT want me to try any other meds right now or too many new foods at once, as she did not want me to change more than one thing at a time and to do changes slowly so I don't compromise my newfound relative stability of symptoms (e.g. my smell sensitivity has decreased about 50% since I've been on Allegra and Singulair and cut back on the first generation H1 blockers). She also said that it was important that I recognize that emotions can be a trigger too, and to that end she suggested I consider breathing exercises, meditation and yoga if I'm feeling stressed (which I'm already doing as much as time allows; I agree that stressing makes it worse so I'm working on that). She gave me a list of high histamine foods to avoid, and told me to come back in 2-3 months, but call her in the meantime if I had concerns or question. So I guess it's a good start - what think? And what about this notion of basophils/eosinophils? (I do think her insistence that tryptase has to be high is because she is not familiar with newer research showing tryptase is not such a great mediator marker, but she seems reasonably knowledgeable on other things including POTS). Even though she won't put the diagnosis MCAD on right now, she seems to be using the same treatments as if that was the dx so I'll run with that for now....
  8. Hi all, So today, thanks to the knowledge of the amazing posters on this forum, I finally got a diagnosis of MCAD and MCS from the immunologist. From my 1st reaction to diagnosis has been about 6 weeks. I am so greatful for the help of everyone on here who helped me pursue a diagnosis. So I have some questions for others in the same postion, sorry for the long post and ramble in advance! - I have to now carry a medi/bracelet card with MCAD/EDS III, POTS and Diabetes insipidus on it. Any tips on how to present this? Aware most people have not heard of MCAD. I am going to put a card on my keys I think. - Is there anyone else like me who has MCAD and drug sensitivity (i.e cant take antihistamines)? If so what drugs can you take? - is there anyone one here who has normal POTS and MCAD, or just hyper POTS? - Does anyone else have Diabetes Insipidus and MCAD? My Immunologist said that low unrine osmoality can skew the methyl histamine result, becuase of something to do with the creatine. i dont understand exactly what he means but it seems that low urine osmoality can increase the unrine methyl histamine result. My immunologist is contacting an MCAD expert from Spain to confirm my diagnosis because of this. I am being admitted to hospital to try Sodium Cromoglycate next week in case i react to it. i am nervous about this becuase i read on here that someone has had drop attacks from it. I have had this before from zyrtek, and if i cant take Sodium Cromoglycate or anti histamines i'll have to be living in a bubble! They will also be testing adrenaline, hydrocortisone and fludrocortisone. I couldnt tolerate fludro previously. I have a theory that my CNS is super sensitive or theres something wrong with it. I have central diabetes insipidus with no pituatry inflamation etc, extreme reactions to drugs such as the drop attacks and heart rythym disruption from some anti histamines. My head MRI was normal. I also spoke to the Immunologist about the role of stress/stimulation in MCAD/MCS. I can eat some foods fine one day, and then the next day react. The same applies to some chemical smells. He think stress plays a big part of it, as yet they are not sure how, but stress can certainly degranulate mast cells and cuase flushing/urticaria. i wonder if an MCAD patient could induce anaphlaxys throguh a panic attack or extreme stress! One final thing. i had been experiencing what i can only describe as sudden jolts to the head out of no where for a while. Immunologsit thinks they are interestingly associated with sudden MAST cell degranulation. This makes sense to me, recently had them when i smealt a spilled bottle of mouthwash, and was in a room full of chinese food. Sorry for the ramble! Aaron
  9. Hi all, My throat is currently "tight" feeling as I just had what I think was another MCAD/Masto attack. I'm currently being tested for both, don't know what i have , but the attack I just had scared the heck out of me. I think it was set off by touching an air filter - things like that and insulation have always irritated my skin, but nothing like this! I have only eaten the same old things I always eat today that don't bother me. I wheeled back to my room after touching th filter (have infant I care for in bed), and my ear went nuts itching and going numb, half my face then followed suite, and then my tongue started itching and my throat started feeling swollen. Of course I panicked, I am alone with a baby with no local family. All my friends and my husband work. My husband has to be pulled from his classroom by an administrator if I call in a panick, so I try to wait things out before calling - he has missed a lot of work because of me. I called my home health PT, she said call the allergist - so I spoke with a PA who wanted me to go to the ER. She said with mast cell issues, the anaphylaxis can last a long time. I take klonopin, so I don't take benadryl (have to care for baby AWAKE) and antihystamines make me feel tachy and anxious, so I dont even have any here. So she said go to the ER so they can monitor my throat, and that they were just starting to get my bloodwork back, and that my general IgE levels were high, so they will give me an epipen. No other specifics at this point, I just had the bloodwork done. As you can tell, I am still at home trying to wait it out and not in the ER. Its been about an hour, and my throat is still tight, I am burping as well which is weird (I took Zantac earlier) and that started when my throat started closing, and I do have a hiatal hernia which I think can make your throat feel tight as well. I took more Klonopin to calm down, this episode really scared me. Anyways, the weird thing was that I usually react on my right side of my face, but this all happened on the left - wondering if I touched my skin on that side after touching the air filter. Does anyone have any thoughts on this? Also - I read a post where poeple were talking about your tryptase levels and getting a diagnosis- my allergist said they have to be above 20 for mastocytosis, wasn't sure what the criteria is for MCAD. I remember a few of you debating the tryptase thing as well, was wondering if there is any literature on it - I have only found the one article on the link between hyperpots and mcad. Thanks! If it gets worse I'm going to the ER. Hopefully it won't.
  10. Hey all. I've been trying to piece together my 9-10 year history of these severe 'attacks'/'episodes' that I had been having up to the point of starting on mcad meds about a year ago. It seems my attacks where never thought to be anaphylaxis shock due to the fact that i never had any known allergies. So, docs never thought of it at the time in the er when i would be admitted over a period of a few days. (My doc now is going to pull up those records and see if they tested me at any of those er times for, is it the triptase level???? im sooo not sure on that one..... yall can fill me in on the correct test for it). But what I would really, really, truly like to know is how you describe your anaphylaxis shock (not any due to a known trigger, such as peanut, etc, but ones that are due to the mcad and an unknown trigger is at play). I know from the beginning, mine started with just 2 or 3 symptoms..... severe inability to breath for no reason and severe weakness to the point of being comatose/paralyzed and unable to communicate because i was focusing on my diaphram and breathing and panting like a dog the whole time. Of course, over the years, more symptoms would jump aboard these attacks.... maybe as the mcad got worse? But, it would help significantly if i could hear from you how/what your anaphylaxic shock episode felt like and if you would say that it was a huge intense amount of suffering with it, along with a feeling you were dying (for me this IS NOT ANXIETY... but a true deep feeling like my body was closing up and shutting down on itself...... yet the docs could find no answer over all these years to these attacks of mine). Ok..... if any of you can help.... I WOULD BEEEE SOOOOOO GRATEFUL!!!!!!! Thank you all!! tennille
  11. First yesterday and now again tonight I had very bad mast cell activation episodes (not sure what triggered them). Came close to using an epi-pen (which I've never done before) and going to the hospital but I took a lot of Benadryl and the worst passed. Here's the thing though - - These episodes were different from the ones I've been having for weeks now, because along with the flushing/hot skin and blood pressure fluctuations came a new and alarming symptom - - the left side of my face and throat and tongue went numb, and started to feel like they were swelling. (along with a metallic taste in my mouth) I mean really numb, as if I'd just had numbing shots at the dentist. I took Benadryl and it subsided,completely yesterday, but tonight I am still partially numb on my cheek/throat even several hours after the worst of the episode. But what concerns me even more is that this was so prominently left-sided. Has anyone else here who has a probable or confirmed MCAD diagnosis experienced a sidedness like this for numbness, or do you think I should be alarmed? I realized belatedly that I should have gone to the hospital ER tonight so that I could get the tryptase blood test and other lab work my new allergist doc wants during or immediately after an acute attack, but I didn't have anyone who could drive me until a couple hours later and I wasn't up to driving myself. Also I had taken 3 doses of Benadryl plus 1 Atarax, and I wondered if that would screw up the test results, or is it OK to be on a large dose of antihistamines when you do the acute labs? I had forgotten to ask my doctor that.. For those of you who have had acute MCAD attacks and been fortunate enough to test the tryptase to find it elevated over baseline to confirm your diagnosis - how many hours after the attack started (or stopped) was it before you did the blood draw, and had you taken high dose antihistamines? Thanks for any insights you POTS/MCAD-ers can offer.
  12. I was just reading the other day on a post regarding hormones, etc...... and i read something that issie had written about aspartame and how it works in the body/brain and then i was reading how it (phenylalanine) is a precursor for tyrosine, the monoamine signaling molecules dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). And also L-Phenylalanine is biologically converted into L-tyrosine, another one of the DNA-encoded amino acids. L-tyrosine in turn is converted into L-DOPA, which is further converted into dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). The latter three are known as the catecholamines. (ok, i copied all that from wikipedia)...... cuz my poor give out brain can't make sense of what this does. What's going on is: for the past 4 nights i have eaten gluten free yogurt (1/2 of a small container a night before i go to bed) and it has aspartame in it. Each morning i have woke up to a functional morning...... and a fairly functional day. A seriously significant improvement that i haven't felt in about 2 years. Of course, im also implementing the gluten free diet as best as i can..... and i noticed that 3 of those nights, that i slept hard, without waking up, a full night's sleep and well and actually woke up feeling like i had rested and i haven't felt that in probably 9 years, ever. Keep in mind, I started on my period yesterday, so the 2 days before that and up until now would have been my most severe days of the month, as most of us are most severe the days before and during our periods. So, even with going into my monthly cycle and during it, all the sudden it's a very, very noticable change...... not a cure all, but it's just so obvious something is different. I have thought this over and over the past few days since i read that post first about the aspartame, and then i was eating that yogurt and just happened to notice the next mornings were different, far different than id felt in a long time..... then i put 2 and 2 together and wandering if the aspartame could be contributing to this. But i can't seem to eat a whole container, if i eat the whole container, i feel some of the negative side effects, but a half one i seem to tolerate for the time being...... BUT is it this? that is making the difference??? I haven't changed any meds, other than going from generic zantac to the brand for a week, for my mcad. I may be jumping to conclusions..... or it could be the brand named zantac? Or it could be a few days of remission..... But this is such an evident difference that i have never felt in a good 2-3 years, possibly more. I've walked around for days (get that??? i've walked more than i have in forever! but tire very very quickly still).... but have walked around wandering what it is that could be making this much of a difference and i cant figure it out. I have had 4 mornings that i could get out of bed and go. Of course, i run down fast and all, but i can tell something is different..... even the digestive issues have lightened up considerably... (could be due to the probiotics that is in the yogurt as well). Is anyone's brain working today, cuz i still can't seem to make sense of it, or even if this is possible? Any thoughts, suggestions, ideas on the aspartame and how it affects the brain, in lamens terms? thanks!! tennille
  13. Oh..where to start... Let me start by saying I still really like this Immunologist. I think he is open minded and is a "healer" not just a doctor because someone gave him a license. Also, let me apologize, this is gonna be a long one. We talked for a long while. I spent half of that time with my head on his desk, leaving sweaty hand-prints, and fidgeting because I was having an acute attack of what ever this is that I have (I've decided POTS+ is a good name.). It was triggered by walking from the waiting room to his office (50 ft). I knew while waiting for him it was going to happen, I could feel it coming sitting in the waiting room. He did offer assistance but I told him we needed to keep going cause I was gonna run out of steam if we didn't. He asked what my goal is in seeing him and my answer was this, "I want to figure out if there is an underlying cause to my POTS and if there is, treat it the best we can in hopes of getting my life back." He said well, "Good! Well, POTS isn't a diagnosis...it's a syndrome and you can't have this many symptoms going on at one time without having at least one disease process going on, maybe more. We need to treat what we know and see what symptoms we eliminate so we can then see if we need to do more diagnostics." (He wasn't being a jerk about POTS, just saying that he thinks there is something more sinister causing the POTS.) He then said, "You definitely have environmental allergies, we have no question about that. You also have mast cell involvement, I am sure but we can't really prove it anyway. It's really not a separate issue as they are related and go hand in hand. We are going to put you on an H1 and an H2 antihistamine and immunotherapy and see where we can get you with that. Then, we will see what else we need to look into." There was a lot more conversation reviewing my history, my current meds, my familial links to allergy and auto immune. I couldn't think very straight so I didn't ask nearly as much as usual...just tried to answer his questions thoroughly. I asked what the official Dx is and he said POTS and atopic allergic rhinitus. (That's POTS and "severe hayfever"!) I also inquired about the issue someone brought up to me about the allergy shots with a beta blocker and he said that is correct and we will have to be extremely careful. So here's my issues: 1) If I do have mast cell issues, I would like that figured out and spelled out so future doctors, insurance co., and SSA take it seriously. I'm afrai they won't take "hayfever" very seriously. On the other hand, is that important or is it more important that he is basically treating for both possibilities and is really trying to get me better? Thoughts? 2) Here's my bloodwork and I don't really understand how it relates to the allergy vs. MCAD issues: IGa = 99 Normal = 81-463 IGg = 707 Normal = 694 - 1618 (No abnormalities in my IGg subclasses) IGm = 33 Normal = 48-271 ***Low*** Ige = 53 Normal = 0 - 114 No food allergies showed up even though we know I have clinical sensitivities. Basophils and Lymphocytes all at normal levels No natural immunity to pneomococcal infection Good immunity to tetanus toxoid Insight? 3) I am really scared to try these shots again because of the last time (and I usually have no fear abuot medical procedures.) I am torn between fear of it really going badly and the feeling of needing to try because I am not getting better on my current tx plan. What's a girl to do?
  14. I cannot recall the topic I was following but a poster suggested that when I see my hemeoncologist (new visit, referred for the Delta Granule Storage Pool Deficiency found by lab testing ordered by cardiac specialst in dysautonomia), that I ask about a tryptase level. Commonalities were IBS-D, chronic sinusitis, multiple drug, food and environmental allergies, early onset arthritis, fibromyalgia, CFS, tendonitis, pleuritis, tenosynovitis, pericapsulitis, osteomyelitis, osteopenia (early onset), bronchitis, bursitis, pituitary adenoma, ovarian cysts (and cysts on kidneys, lungs, heart), pericardial effusion, diverticulitis, colon polyps, and a host of other ailments. I was feeling scared and overwhelmed and intimidated going to see a hemeoncologist at big Cancer Center. This doctor could not have been nicer. He listened to me and I took copies of my labs showing low T cells, T-helper cells, IgG1, IgG2, other IgG subclasses and low gamma globulins with fluctuating WBCs mostly 'normal'. He asked about parents having chronic sinusitis (why I did not know--both had cancer). I summoned the nerve to ask about this Mast Cell Activation Disorder (all the while waiting to be dismissed, but to my amazement, I was not). He told me there was a very good chance that it might be. He said that it could be that I just have 'lazy phagocytes'. The satellite clinic where I saw him was not able to perform what tests he thought I needed. So now he has referred me to 2 of his associates in Columbus--referring to one for 'multicomplex immunodeficiencies' and referring to the second one for 'immunodeficiencies and the Delta Granule Storage Pool Deficiency'. So I am still scared and yet feel comfortable enough to raise the question thanks to you posters who have provided me with info. Had I only seen hematologist for the bleeding (as the letter instructed), the immune deficiencies I've had may have remained missed as a potential piece to the puzzle. My appointment was the day before Thanksgiving--the same day the phone company accidentally took out my internet when they started up somebody else's new internet services in the neighborhood, crossing the circuits and disabling me until today. My hemeoncologist wanted me in asap and was confident he could do it since he was insider making referral, yet the first appointment isn't until close to Christmas and the other hemeoncologist appt. is late Jan. Without your discussions and input and references, I would never have learned about the link to such things. Thank you all.
  15. I am aware that you can get flushing due to mast cell activation. Are there other types of flushing too? I am getting flushing consistently when I am lying down and also when i sit with my legs down (ie normal sitting). These are situations where i have the lowest BP. The flush doesnt feel hot, actually it's difficult to describe what it feels like. I have been scanned for tumors btw. Does anybody else have flushing whiich correlates with low bp (the low bp happens first, then the flushing)?
  16. Long story, 6 months ago had tingling in hands and feet, muscle twitches and night sweats. Had a CT had anaphylaxis to CT contrast was biphasic, got too much epi went into vtach was in icu etc. Had ongoing rash, chest tightness, itching for months started on ketotifen, cromolyn, cetirizine, zantac, singulair which helped. Failed steroid taper after 3 months due to adrenal insuff (prednisone). Was switched to hydrocortisone but still failing tapers. Allergy symptoms improved. Started having tachycardia worst on standing. Tried florinef, had a fever and a flare of allergy symptoms.....was sent away for further investigations. Normal tryptase, urine histamine etc. Haven't had BMB. Allergy symptoms improved over 3 weeks but still have tachycardia---? pots and am on a slow steroid taper and hoping adrenals will recover. Interested in input. Realized POTS may be adrenal, mast cell, separate or a combo but interested in your input especially Julie/Mack's mom if you can! Still have tingling in hands and feet. Realizing not much is known about most of this and I'll have to do a lot of figuring on my own.
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