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POTSMama

Have Pots And Now Wondering If I Have Mcad - Help

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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

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Hi Carol,

I'm newly diagnosed with autonomic neuropathy along with orthostatic intolerance and we have similar symptoms. I also flush sometimes after I eat, it has gotten better over the years and not as bad, but it has recently flared up after eating, which I was told that it is typical of autonomic neuropathy. But maybe it's just any dysautonomia, I'm not sure about POTS. Sorry, wish I could tell you more. Doctors like to try to find where the autonomic neuropathy origins are from, but I didn't test positive for any of the six or seven diseases that it comes from, therefore idiopathic is my diagnosis, meaning unknown origin. But my doc believes it is autoimmune but can't make it official since it doesn't show up in tests. I really am just learning about the disorder myself. I'm not saying this is what you have, but maybe they could do some testing to rule it out. I am doing the MCAD test next week also just to rule that out, since they haven't quite figured out all of my issues. I go to Mayo in Scottsdale and have had good luck with a doctor there. The best test that helped me was something called a QSart test. Not a lot of facilities have them. So they are not that easy to find. I see you are in Colorado, can you travel to Rochester Mayo? They have a great neuro facility and have some doctors who specialize in this. But there are more advanced members on here to help you better with that than me. I hope you can find out soon what is going on. Hang in there. Getting diagnosed is not that easy sometimes.

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Thanks, Maiysa, I appreciate your response. I was really disappointed when I saw today that you were the only one who replied to my post because I know there are others on here with POTS/MCAD and I was hoping for some confirmation that it sounds like that is a possibility in my case, and for advice regarding my worries about Singulair or question whether I should take Singulair or prednisone (my understanding is that I can't take both together but not sure). But maybe most people are off on T-Day holiday. It's just that I am feeling very alone in this as my doctors are possibly considering that POTS/MCAD has something to do with my seeming all over allergic reaction (only because I printed out articles and gave them information), but I know they also are also somewhat dismissing me as an anxiety case (but who wouldn't be anxious?) - - and it's not like the doctors are calling and checking up on me. I call them every couple days and pester them. And I only have 3 days until I'm needing to be well enough to at least drive my kids to/from school again (it's only 5 minutes but I'm worried I'll have an "episode" in the car), and preferably go into the office for a little or else I have to file for short-term disability or lose my job (something we really can't financially afford). But the Pedialyte, Ensure drinks and vitamins (did I mention before that I have non-existent levels of Vit D in my blood when my holistic woman's doc measured it?) and trying to eat small healthy meals frequently, Atarax, Benadryl, and Zantac aren't making me feel much better. Would a POTS/MCAD sufferer out there please tell me if I should be feeling at least a little better already after 4-5 days on this regiment of antihistimines? Or is it too soon?

In desperation, my husband and I discussed last night my trying to get into Mayo Rochester or Vanderbilt clinic ASAP, but I know that will take some time/cost and I need some more immediate relief. Last night I had an episode for about 20 minutes where my pulse bounced from 36 to 110, and my blood pressure from 98/67 to 225/159 (and the high pulse was not necessarily tied to the high blood pressure) and I shook all over uncontrollably (and so cold feeling), and today I am so fatigued and short of breath I can't hardly move, plus I'm still having the throat irritation with eating and the skin flushing/burning feeling despite all the meds I'm on (although clearly the flushing is more when the meds are starting to run out). And I am coughing a bit now and clearing my throat as it feels like my lungs are full. I broke down and took a 1/4 Singulair just now to see how I react to it (and I was only given the 5 mg chewables), but I am scared of new meds as I have had bad reactions sometimes and a little seems to do a lot in me. Right now my main problematic symptoms are severe fatigue, shortness of breath, throat discomfort after eating (although this does seem to be getting a bit better), and awful POTS episodes 1-2x/day for no perceptible reason (no trigger I can see and these are the worse episodes I've ever had). I swear I only feel alright when I'm sleeping. I admit I am starting to feel depressed and hopeless as I just don't know what to do, and my husband is being patient, but I have 3 little girls who need attention from me...

Carol

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Oh, and I meant to also say that the flushing feeling on my head/neck/torso has abated on the antihistimines but not completely gone away either. I am definitely experiencing brain fog so don't know if my posts entirely make sense....

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I'm glad you're getting checked for carcinoid. My mom has had carcinoid syndrome for most of her life. FYI, the gold standard for testing is a blood test called chromogranin-A. The 24-hr urine 5-HIAA will only show an abnormality if the carcinoid tumors have been especially active during those 24 hours. The chromogranin A will show tumor activity for the past week or so. Most labs can run it (Arup, Quest, ISI, etc)

And, welcome to the forum although I'm sorry to hear that your illness is so severe lately! My husband and I are in the process of adopting from Taiwan, so bravo for taking in your two precious Chinese daughters!

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Reading your post is like reading my story. I've been battling for sick months after an anaphylactic reaction to CT contrast. Read my blog http://mastcelladrenalinsufficiencypots.blogspot.com/

Contact me if you want.

Yes you should get the N-methylhistamine done. But no test changes your symptoms and while it's an area of great debate, if pheo and carcinoid have been excluded, you need to avoid triggers and find a med combo that helps. I am also on singulair. Are you on any mast cell stabilizers eg cromolyn?

I wouldnt recommend M@yo, I would go to Boston-Brigham & Women's if you can go somewhere.

I also have POTS but no one's too concerned about it or doing anything. I'm trying to get off steroids.

But I don't have control yet---had tongue and throat swelling to SMELL of garlic last night! It's insane

I Too want my life back.

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Thank you, Janie. Yes, we only did the 24 hour urine, but I sure was symptomatic during that period. Obviously I hope it's not carcinoid, but I will also mention to my doctor that maybe we should have the other test you mentioned if this one is negative.

P.S. Adoption is a wonderful way to grow a family - - congratulations on your decision! I love all three of my daughters very much - - we are blessed with 3 great girls. That's why it's so important I get well so I can be there for them again instead of laying on the couch feeling miserable all day. Thanks so much for your support.

Carol

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p.s. personally I will NEVER take steroids again IF I can get off, unless it's life/death. They are so harsh with so many side effects and I might be steroid dependent for life because they were used inappropriately in my case

I would take every other med possible before going on steroids

singulair helped my breathing a lot. I take it twice a day.

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Anaphylaxing,

Oh, I'm so sorry you are suffering so much! I will go read your blog and we can perhaps e-talk offline. It does sound like you and I have had similar triggers, but fortunately I am not haiving further anaphylactic reactions - - just milder food reactions as long as I stay on antihistimines. I hope you find an answer soon!

Carol

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I know this thread is from years ago, but I'm wondering if @POTSMama ever found any relief from the itching. I have had POTS (which my cardio told me recently that since all of my autonomic functions are getting worse, I really should call it Dysautonomia), I also have EDS,  and fibromyalgia,  severe allergies. I currently take 360mg of Allegra, Singulair, Atarax, Zyzal and get weekly allergy shots. My skin is still itchy all the time. My allergist is baffled bc the meds I'm on should control the itching and hives. He sent me to the dermatologist. Nothing is visible on my skin so he was also baffled. Suggested I switch using cerave lotion, and unscented Dial bar soap. I saw a bit of an improvement for a few weeks and then it got bad again. I cover myself in cortisone cream but it usually doesn't help much. I have scratches and bruises all over my legs from bc I'm so itchy, I have to scratch. Also, the skin under my bottom lip is the itchiest spot. It's been like that for over a year-but there are no products that I am using only in that spot and there are no visible hives!! We have done food allergy testing a few times and I have completely cut out of my diet the foods that I'm allergic to. Does anyone have a suggestion of what could be using the itching? Or what to use to help it aside from ALL the allergy meds I'm on and cortisone cream? Thank you!!! 

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No @katybug I haven't heard of that. I'm not a huge fan of prednisone but if it would knock whatever it is out of my system, it might be worth it. I'll mention it to my doctor. Thanks! 

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Hi Stace915. I haven't been on here in years, but received notification of your post via email and I'm happy I did so I can give an update. Reading my posts from years ago, I recall how very desperate I felt at the time! First of all, I can tell you that I am much, much better so there is lots of hope for improvement! I now live a fairly normal life, working a job, taking care of my children. and doing most things I want to do. I don't always feel great and I still have bad days, but more good ones than bad and I am extremely grateful for that. I think my immune system finally settled down with vigilance and a multi-faceted approach. Currently I still eat a fairly proscribed diet but it's mostly healthy - - I eat chicken, vegetables (salads, soups, etc), some fruit and some non-gluten grains like rice mainly. I don't do dairy, soy, gluten, many processed foods. I can have an occasional glass of white wine (not red, too much histamine) and I can again have an occasional cup of coffee and I drink herb teas and a lot of water. I don't like perfume smells still (I had become very chemically sensitive), but can tolerate them now if I must by taking Benadryl, but I don't use perfumed items and I use all natural cleaning supplies in my house and all natural garden and lawn treatments. I even use natural cosmetics and shampoos from a company called "100% pure". I now flush and have skin itching/hives very seldom, and usually only when I have goofed such as eaten the wrong (high-histamine) food or drink, or when I'm stressed about something.. I can tolerate heat and cold extremes better, although I don't love heat still so keep my house cool. I rarely have POTS symptoms at all now, and mostly have to deal only with occasional MCAS symptoms. 

Besides what I've already mentioned, here's what worked for me -- I slowly weaned off the very high doses of antihistamines my physician had me on at first (I only used very short term prednisone when I was so sick and don't think it helped) so I now take a maintenance dose of 2 Atarax (hydroxyzine) per day and 2 Zantac (those are H1 and H2 blockers for the MCAS). If I'm feeling short of breath, I sometimes take a Singulair or use an inhaler, but rarely.  If I have a reaction to something, I take extra hydroxyzine or Benadryl. I have not had an anaphylaxis for years now, thank goodness and I'm thinking of even reducing my antihistamines further. If I have POTS episodes I sometimes take a clonazapam (benzodiazepine) to calm the nervous system, but rarely. Since I got on antihistamines that work well for me, I have stopped having serious POTS symptoms, showing that MCAS probably underlied that in my case. If I get itchy, which doesn't happen often either, I also take some extra Benadryl, but I try not to take it too much.

I have also taken a holistic approach... I read about how certain herbs and supplements are mast cell stabilizing and added those to my diet. The best source I found for the holistic approach was the low-histamine-chef website by Yasmina (she too has largely healed from MCAS with holistic approaches). So I use a lot of herbs in homemade chicken soup and I take bioflavinoid supplements like Neuroprotek and quercetin with vitamin C. I also worked with a holistic doctor who put me on vitamins and minerals, and also supplements to help with methylation and detox. Finally, I realized that the stress of the illness itself was making me sicker, so I have used relaxation, mindfulness meditation, extra sleep, positive visualization, etc, to help me heal. It may sound like the latter is frivolous, but it's really not... we need to be destressed for our bodies to heal. 

I am not perfectly well. I have flares now and then, and other health issues crop up that may or may not be related, but I do think my immune system and gut have healed enough that I don't mast cell degranulate as hard or as often, and that has made all the mult-system symptoms better: less asthma, less heart rhythm and blood pressure problems, less brain fog, less reactions to food and smells and temperature, less bladder over-reactivity (interstitial cystitis), etc. I should mention that I don't have an EDS diagnosis but loose joints and collagen problems run in the family so I too think I have the triad of MCAS, POTS, and EDS-like. There is a Facebook group called The Elephant Project that addresses those of us with the triad if you want to consider joining.

Now to answer your specific question re: itching/skin issues. Probably you need to make some changes in your diet and environment, and you may want to consider getting off the allergy shots. People with MCAS don't do well on those because they don't "desensitize" us but rather stir things up. Avoiding triggers is a must while you heal. If you use chemical housecleaning products, stop and get natural ones or use old fashioned cleaners like baking soda and vinegar. Throw out commercial beauty products and try all natural ones, and that includes shampoos, lotions, makeup, soaps. Don't buy plastic products that outgas or new furniture that outgasses formaldehyde (we only buy used furniture now that has already outgassed). Make sure there is no mold in your home and open windows for fresh air often or invest in a good air filtering and water filterig system (there are books on making your home 'safe'). We moved to a different house with sunny windows, and no mold, and with air filtering, etc, and I have felt much better here. As far as diet, keep a log of what you eat and your symptoms and try removing suspect foods. Even be careful of the meds you are taking, as they can have fillers you can  react to. Eat whole organic foods and avoid additives and preservatives. Once you make your environment and food sources safe, you may find the skin condition improves. You may want to see a holistic doc familiar with mast cell disorders if you can, and find an allergist who understands that MCAS can't be treated the same as standard allergies.

Good luck! I'd love to hear how you fair!

Carol

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Thanks Carol @potsmama 

I am vegetarian and have eaten clean for a for years (most of the time). I don't seem to get any reaction to gluten, as I've tried a gluten free diet in the past. I do take 300 mg a day of Zantac but for reflux, if it will help with the allergies great! I am in the process of going through some tests for my digestive system and I'm very limited with what I can eat, but once that is finished I will look into some more of these options. I would love to be on less allergy meds! 

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Stace915,

I ate vegetarian for years also, but when I had to restrict my diet so much I added chicken for protein (still don't like it, but feel worse without it - - make sure you are getting enough protein and B12 methylcobain sort if you can tolerate it [I can't]). From your description I suspect you do have MCAS rather than just normal allergies. I spent years thinking I just had POTS and "allergies". But MCAS is different and once I knew I had it, I had a better idea how to handle it, and just throwing more and more allergy meds at it didn't help all by itself. I really think you should detox your toiletries... even unscented commercial soap makes me itch, so I use Tom's of Maines or all natural glycerin instead and I don't use too much to strip the oils on my skin. I cannot use prescription or over the counter commercial lotions or I itch, except for Lubriderm, and other than that I buy lotions from 100% pure. For what it's worth, your mention of itching under your lip is familiar and itcing with no hives or rash too. I used to itch full body and scratch so hard I'd make welts, but otherwise my skin looked normal (I in fact typically did not itch when I broke out in hives, which was rare), and lip area would itch and sometimes just go numb. I still get itching sometimes, I won't lie, but it is so much more tolerable now and when I do, I take Benadryl or an extra hydroxyzine and it goes away usually. I also take coolish rather than hot showers (hot showers make me itch) and use natural shampoos (100% pure) else my scalp starts itching ridiculously. Is there a doc in your area familiar with MCAS or who is willing to read everything about it and become familiar? I live in Colorado and did not have an MCAS specialist here but had 3 MD docs willing to read about it who got me diagnosed (my family doc was resistant when I told him I thought I had this, but I was persistant), and then I found a "wellness" doc who knew something about it and read more later. I am surprised you had a dermatologist who didn't think of mast cell disorder, as they are ones who do know something due to external manifestations of mast cell reactions in some people. A note also is that you need to be careful of fillers in your meds - - there is one brand of Ataraz (I take generics as my insurance won't cover the nongeneric) that I can't take because it makes me reactive including itchy, but can take other brands. Whenever I start on a new med, I take a minute dose (pill split if possible) and work up. I hope you get your answers and get well soon!

Anaphylaxing,

Would love to hear how you are doing now. You and I had so many symptoms in common but last I heard you were still struggling a lot. I think about you and hope things are finally looking up.

Carol

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I didn't get a chance to read this very carefully, but I'm seeing a hematologist in January (in Canada) for suspected MCAS.  In the mean time, I just picked up an excellent book on the topic.  It's called, "Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity" by Dr. Afrin.  He's the dude that discovered MCAS and diagnosed the first patient 9 or 10 years ago.  I actually bought a copy for my family doctor as well (because it really is that good).  It answered a lot of my MCAS questions. 

 

 

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Hi POTSMama - I'm recently diagnosed with POTS and trying to find a doctor in Colorado.    Can you give any recommendations on who you work with.   I'd be interested also in the holistic dr you saw.        Do you think that the dryness and high altitude of the Denver area could have exacerbated your symptoms?      I've bee living with POTS for 5 years and had very mild symptoms that were never diagnosed.    It was almost immediately upon moving here that my symptoms increased and was diagnosed with POTS.    TIA - Michele 

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Hi Michelle,

Sorry it took me awhile to respond - I don't often log onto this forum anymore. I'm afraid there aren't any great doctors in Colorado for POTS or MCAS - - I know because I hunted for one. My family doctor was open and helped diagnose me with POTS but he I don't think he is taking new patients right now as he's moved into an administrative role at a hospital system) and he only diagnosed me after I went to a cardiologist, Dr. Collins at South Denver Cardiology. Dr. Collins also isn't an expert on POTS either, but he did the tests including Table Tilt Test that determined I had a dysautonomia rather than a heart problem, so when I read about POTS and realized that made sense, my family doctor and I came up with that diagnosis (Dr. Collins didn't at the time seem familiar with the diagnosis POTS altlhough he likely is now). So one has to be proactive and educate your doctors since this isn't common enough that most are familiar with it. Then I discovered I had mast cell disorder (MCAS) pretty much on my own (I have a PhD in an unrelated health care field, so I knew how to do research on things)  - - I realized from reading this website that MCAS fit, but my family doctor didn't believe me (thought I was just self diagnosing from online) so first I went to local allergists who were unfamiliar with MCAS. Then I went to doctors at National Jewish hospital in Denver, because they were more familiar with this, and they did the tests that led to an MCAS diagnosis (I had two high mediators in urine/blood tests, but they did do the testing when I was symptomatic and that made the difference I think. The two local allergists didn't know much about MCAS and tested me when I wasn't symptomatic, but one was willing to learn about POTS and MCAS so that helped... his name is Dr. Koepke from the Colorado Asthma and Allergy...I gave him articles about POTS and MCAS and he was interested and actually read them).  But he isn't an expert on POTS for sure.

My worst symptoms of MCAS developed years after I got the POTS, although looking back I did have early symptoms like heat sensitivity, red body flushing after hot showers, occasional dermatographism, reactions to high histamine foods like strawberries sometimes (made me itchy), episodes of body-wide itchy skin, odd asthmatic like episodes that came and went, etc .... I just didn't get an anaphylaxis or develop the food "allergies" and smell sensitivity until much later. My first major symptom was an anaphylaxis to an antibiotic. But the interesting thing is treating the POTS with medications (benzos, salt tablets, beta blockers -- turns out the beta blockers were making my MCAS much worse so I was better without them) never did do that much to help, but once I treated the MCAS with daily antihistamines (H1 and H2 blockers) and vitamin/mineral supplements, the POTS symptoms dramatically improved!  Looking back, I realized that when I occasionally had taken Benadryl for a cold or to sleep better or for hay fever, I had less POTS during that period. So clearly the MCAS at least partly underlied the POTS. After I knew about the MCAS, I did 23-and-me genetic testing and a holistic doctor looked my test results over with me and found out that what underlied the MCAS was probably partly methylation errors (MTHFR gene issues)... I don't detox well. So we treated that too with supplements, which helped.

It was a long 25+ year road but I finally got to the point where nearly all my symptoms were under control...I have rare flares of POTS but only when under a lot of mental/emotional stress or not taking care of myself physically (e.g. not enough sleep and healthy foods or forgetting to take my supplements). I think I would've gotten better much sooner if I'd only known! The holistic doctor I saw was Dr. Wiesnieski from the Natural Medicine clinic in Berthoud, Colorado (yes I drove 50 minutes to see him a few times but he also sometimes does phone appointments once you're an established patient). He gave me supplements that helped and I recommend him. Finally, most recently I unfortunately discovered I have early stage rheumatoid arthritis (I don't believe this is related to the MCAS or POTS, but it does run in my family) and I didn't want to go on the hard-core meds for that if I don't have to (I prefer supplements and natural methods to pharmaceuticals when possible), so I went to another holistic doctor in Golden, Colorado, Dr. Grossman of the Grossman Wellness Center for an LDN prescription (low dose naltrexone, I take 3 to 4.5 mg, which is supposed to modulate the immune system and help RA), but I was under the impression he didn't know much about MCAS or POTS at all. Besides these docs, the person most instrumental in my getting well was Yasmina of the website "the low histamine chef" - - she is mostly for MCAS but her website was super helpful to me and I went to a retreat she was at and she convinced me of the importance of a non-toxic lifestyle and a healthy mast-cell modulating diet, which has made all the difference in the world.

My POTS has waxed and waned over the years, and I don't think moving to Colorado made any difference for me - - however, stress makes a huge negative difference so perhaps you had a stressful move/adjustment (?), and sometimes my POTS flares for no apparent reason before settling down again. In fact, Colorado seemed to help me, as I don't do well in heat/humidity and summers were more reasonable here heatwise... but I was originally from here and coming home. We are all different and it may be what our bodies are used to.  Interestingly, my POTS disappeared when I was pregnant (16 years ago now) but recurred after I gave birth, so hormones are obviously an issue too. I am post-menopausal now so don't have that monthly flare I used to get.

Have you been checked to see if you have MCAS too? You might try taking an H1 antihistamine like Zyrtec and an H2 blocker like Zantac for a couple weeks since they have no side effects, to see if that makes a difference in your POTS symptoms, assuming you don't have any medical reasons not to (I am not a doctor so don't want to prescribe, but these are over the counter and without obvious dangers as far as I know) to help know if MCAS is it, if you have any symptoms of MCAS (skin itching or flushing, food 'allergies', hives, asthma like episodes, numbness spots on body that are transient, reactions to heat/sun/medication/emotional stress, throat and bowel symptoms - - and not everyone has every symptom of course).  But if you are planning on getting tested for MCAS, don't take any H1 or H2 meds as it will make it harder to diagnose you.

Here's my current regimen that keeps me mostly healthy:

1. I take an H1 and H2 everyday - - I currently take 1 Atarax (hydroxyzine) for an H1, which is prescription, but I am thinking of switching to Zyrtec as it's less strong (I take the least dose of things that controls my symptoms), and 1 Zantac 150 mg (I can skip the Atarax sometimes and be fine but can't skip the H2 at all or I get reflux badly). I used to take 2 per day of each but over time I have been able to reduce that.

2. These supplements (from Dr. W) - - BH4 (for methylation errors), molybdenum, vitamin C and quercetin (mast cell stabilizers), a multi-vitamin and mineral, and sometimes oil of oregano for detoxing or a natural iron supplement if I get anemic, and occasionally other supplements as my symptoms dictate. We also trialed some other supplements that I didn't think helped (like HIST-DAO) but he worked me through determining what worked for me. Also, because I also had a parathyroid adenoma removed last year (discovered by high calcium in my bloodstream), I have to take a calcium and vit D supplement so as to rebuild my bone strength (I had early osteopenia at the time that was discovered - - that also is something that runs in my family that I don't think was related to my MCAS and POTS ... we just seem to have bad genetics!).

3. I eat a healthy diet re: Yasmina the low-histamine chef. I eat chicken and beans for protein (I'm otherwise a vegetarian), lots of vegetables and some fruits, some grains (I do white rice and oats only). I don't eat dairy, gluten, soy, artificial colors and flavors, or most packaged foods and I try not to eat much sugar ... I eat mostly whole foods. Initially I avoided high histamine fruits and veggies, but can tolerate more of these now, and I make sure food like chicken does not sit out and get histamine (I freeze immediately after cooking). I make Yasmina's green soup and green smoothies, and I do things like gluten-free zucchini muffins. Also, I use loads of mast cell stabilizing and anti-histamine property herbs and spices on my cooking. Healthy food choices has made a huge positive impact on my health. I also drink healthy teas.

4. I try to drink a lot of water and get moderate exercise - - too much or too rigorous of exercise makes me POTS and MCAS flare, so I have to take it easy. I like yoga and walking meditation. I try to get 8 hours sleep a night and I watch my stress levels emotionally  -   I have taken up journaling and meditation (I have three teen daughters and that can cause a lot of stress at times, much as I love them!). I avoid getting either over-heated or overly cold as that can trigger me (over heating triggers MCAS symptoms and over cold triggers POTS).

5.  On now-rare occasions when I have a POTS flare for a few days (which is less blood pressure whacking around like it used to be, and more just tachycardia with movement), I take 1/2 a clonazepam (an anxiety drug, but I don't take it for that, I take it because it calms down the immune system) and I increase my antihistamines temporarily, and that seems to help until it calms down.

6. I avoid all toxins - - I use natural cleaning solutions (e.g. vinegar and water with a drop of essential oil instead of Windex, etc), all-natural shampoos, soaps, lotions (I use Lubriderm lotion, any natural soap,  and I like the "100% natural brand" hair care products), and I use the "100% natural" brand cosmetics. I don't use perfumed products at all except all natural essential oils for smells (and some I react to, so I'm careful), and I use "Free and clear" laundry products.  We don't use toxic products on our lawncare either.

7. Finally, I don't know if it's coincidental or not, but since I started on the LDN supplement for my rheumatoid arthritis, it seems to have helped my smell and food sensitivities! Someone told me Dr. Afrin was trying it on mast cell patients, so maybe there's something to that, since it is supposed to modulate the immune system. It was not helping my stiff joints so I was going to give it up until I realized it seemed to help the MCAS so I'm keeping it (I finally broke down and am taking Plaquenil for the arthritis but that hasn't so far seemed to have any impact on my other conditions or symptoms, except I'm slightly POTS flaring).  I avoid taking many over the counter or prescription drugs as I react to so many, but once my MCAS stopped flaring, I've been able to tolerate the occasional Tylenol or dye-free ibuprofen (even though ibuprofen is supposedly mast cell degranulating). Oh, and I take Imitrex for the few times a year I get a migraine headache and I tolerate that in small doses.

Perhaps too much information and each of us is different, but I thought I'd share my story in case it helps someone. When  my MCAS flared 7 years ago, after 20 years of horrible off and on POTS symptoms, I was literally bed bound for a time, very sick. But with time and care, I now live a normal life... I work, take care of my daughters and husband and house and yard, can do and go anywhere so long as I'm careful what I'm exposed to and what I do/eat (I take food with me when I travel). For awhile I could not even gas up my car without the fumes giving me an asthma attack and hives, but now I do so just fine, slightly holding my breath when I do the gassing. I also could not for a time go to my kids' school performances without a mask because others perfumes got to me, and now I can tolerate the smells even though I don't like them. I used to not be able to eat out ever, and now I have found restaurants that will cater to my food needs. So the point is, there is hope for recovery and just having to treat this as a chronic illness. I realize not everyone is as fortunate as me and not everyone recovers, but don't lose hope as it took me a very long time, and a very lot of research, trial and error, and hard work, to get where I am.  And I knock on wood superstitiously every time I say that, as I don't take it for granted!!

Good luck and if you have other questions, send me another email. Where in Colorado are you? We are south suburbs of Denver (Lone Tree/Highlands Ranch) if you'd be interested in getting together and talking sometime.

Carol

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