DoozlyGirl

Very well written, Issie. You have certainly captured the various roles on this forum very well. And some merge into new roles as we learn more and can better adapt to this crazy reality known as chronic illness. Peace and health, Lyn

Bren, Normal tryptase does not exclude MCAD/S. Been reading that tryptase can be a higher during flares. Tryptase over 20 is indicative of systemic mastocytosis and anything lower will get a different diagnosis. Good Luck chasing down the MCAD/S diagnosis. Lyn

Anoj, Well, you've come ot the right place. Welcome!! In the beginning it is all overwhelming, but over time you'll learn what terms pertain to you. Have you had a Tilt Table Test? Did he perform orthostatic vitals on you (BP and HR while you are laying, then sitting, then standing?) this is often a good thing to get helpful information quite easily. How did your cardiologist come up with your diagnosis? If he diagnosed you from your history of fainting, the tilt table test could prove to be helpful. There are multiple reasons why a person faints and some things work better, depending on what is going on. There are also many non-medication techniques that can be very helpful in tricking your body to stay upright. Blood could be pooling in your lower legs, and not reaching your brain, so your bodies circuit breaker pops and you faint. A goofy heart rhythm could trigger you to pass out. You could have low blood volume or a host of other reasons triggering you to faint. I have BP and sweating issues and a diagnosis of autonomic neuropathy. Most of us start with hydration, salt, compression socks, and engaging muscles in the legs when we stand. We also have to accomodate for our issues. I have to sit in the shower. I cant bend over, so I use a rolling cart to garden, and rolling desk chair to dust. I get presyncope (all of your symptoms, but my BP is so high I don't actually pass out) and always walk around a grocery store with a cart to lean on. You will learn so much on this site and will soon find others with your same symptoms and issues. Since you don't seem to have GI symptoms or sweating issues, then you may be able to start with a local Electrophysiologist (EP cardiologist who specializes in cardiac rhythms, HR and BP), and can perform the tilt table test at most any hospital. Where are you living? Maybe someone on the site knows of some one in your area. Once you get stablilized, then maybe you would be able to travel to a larger autonomic center. Best wishes, Lyn

Hi Rissy, When I first got my medical alert bracelet, I had just experienced my first episode of anaphylaxis, complete with ambulance ride to hospital. This was way before I was diagnosed with autonomic neuropathy. Now that I am pursuing a MCAS as possible cause of my issues, I have been wondering what to put on my new placard. I am considering Anaphylaxis, systemic mast cell activation and either syncope or orthostatic hypotension. I am even looking up these terms on google to what these terms mean to others. Talking with my cousin last week made me realize that EMTs don't have to really know much about the disorder, they just have to know what to do for you and get you to the hospital. This framed things a bit for me. My question for you is what happens when you may need emergent care? If you have excelerated tachycardia, call it what it is - postural tachycardia relieved with X and X. ( such as hydration, then betablocker) Do you pass out? May want include syncope. Is your BP involved? then NMH or NCS would work. You also probably want to make sure you include SVT and if you have multiple runs of PVCs, (you could call it called bigeminy or trigeminy ((check spelling)) which likely will carry more weight ), since those rhythms could convert to another more unstable rhythm. My cousin reiterated that if he found me passed out at home, they have to do a lot ot assessing to figure out why: blood sugars, alcohol, drugs, allergic reaction, and it may take some time to get to a cardiac, especially with a younger person. On a sidenote, have your urinary methylhistamines been attibuted to a current disorder? Post what you decide and see if others respond. Take care, Lyn

Got my bracelet at Walmart in the pharmacy section for less than 10 bucks. I really like it cause it is discrete, looks like jewelry at first glance, but has a simple medical alert symbol on it in red. It has a hinge and the words OPEN engraved on it. Beneath is my private information. General inserts come with it, but for $15 you can send away for a customized printed attachment they prepare with your personalized information to put inside the bracelet, made of waterproof non-corrosive aluminum. I was able to include my name, DOB, MD to contact and phone number, diagnosis, allergies, meds. I then carry additional instructions and emergency meds on me (MCAS meds). You can order a new insert as your diagnosis or doc changes. Company name is MCAX, in Bristol RI. Recently looked into getting a USB bracelet, and asked my cousin, an EMT about it. He advised against it, stating EMS can't access them in the field and local EDs around here, don't routinely access the information anyway.

potsgirl93, I am sorry to hear about your troubles. Everyone has given such good advice. I have a few things to add. Until you find a decent doc to help you, you may want to try thickened foods, such as mashed potatoes, applesauce, pudding, etc. In the hospital, speech therapists assess for potential swallowing issues and recommend thickened foods, which are easier to swallow than solids or liquids. You can even add a thickening agent to liquids to make them thickened. Once you find a doc, you may ask about a swallowing study, done in Radiology with a speech therapist. They give you various forms of barium (liquid, paste on a cracker, etc) and watch on x ray. Pretty cool how they can watch you swallow and see if there are any damaged areas that don't move as well. Have you tried peppermint or ginger for the nausea? My favorite remedy for nausea is Comfort tea made by Aveda that has licorice and peppermint. Thanks Julie for the post, I also choke on food and it doesn't happen until I am in the middle of swallowing a liquid. I have learned to take a deep breath and relax, which releases it and I can then swallow and breath. Best wishes, Lyn

Ana, I am so sorry to hear that you received damaging treatment at a time when you needed acurate care the most. This breaks my heart. You are articulate, knowlegable and driven and suffered so much from inappropriate care. From your posts, it is easy to see you are still struggling everyday. I wish you nothing but the best. In your case, knowledge of a grading of symptoms wasn't at the core of your damaging care. But I know now, as I am beginning to link my own reactions after imaging/surgical procedures, NO ONE, not myself or my scores of physicians even considered my post procedure symptoms could possible be related to the procedure. Last week, my BFF, at a surgical consult appointment for knee surgery after a recent fall, got a spur of the moment injection of cortisone in her knee in an orthopedic clinic after hours. No discharge directions were given. By the next day, she wasn't right, but couldn't articulate what was going on. By the time I called to check on her, I immediately recognized that she was in a low grade anaphylaxis. She refused to go to the hospital, because she had similar symptoms last year while walking around Lowes and passed out, EMS was called and they treated her as if she was drug seeking. Thank god, she listened to me and had a EPI pen, and had H1s and H2s in the house. I talked her through it explaining what was going on, having her lie down, and alternating meds until relieving her symptoms. My backup plan was to call EMS from my land line (she lives several states away) if she progressed in symptoms at all. The orthopod didn't return her calls until the next day. They are now changing their internal protocols, and now her allergist has something to work with. She is having scratch tests next week with the med cocktail she got that day - cortisone and 3 additonal meds. This makes me wonder how may patients out there are in the same boat, unable to recognize this? The sympathetic overdrive side of my personality is getting motivated......... Take care, Lyn

Fantastic resource on anaphylaxis! Great description of 4 grades of Anaphylaxis: http://www.iainfoctr.com/articles/is-it-anaphylaxis.php Me too, trendelenburg has prevented me from gettign worse. Just think, syncope is natures way of preventing further escalation of anaphylaxis, huh?? I've got some ideas how we can get the word out there.......

Mack's mom, Your posts convinced me to take the time to better understand mast cells and see if it fit in my story. And it does. I have "tried on" dozens of illness. I chased down pheo, then cushings which decribed my symptoms, then looked to pituitary adenoma and insulinoma, among dozens of others, after literally running out of other explanations at the same time some old symptoms returned, MCAS began singing to me. My autonomic issues were always just a description of how messed up I really am. I still have much of my original research on contrast and imaging procedures, although it is in deep storage. Not sure why I kept it all these years, but guess it will be helpful in the future, as I plug along. I am familiar with Ana's story. Hearing bits of her story made my hair stand on ends. The contrast literature mainly mentions pheochromocytoma and kidney disease as the biggie contraindications for contrast. Several outdated obscure sources mention citric acid (often used in oral contrast and used in mixing with oral contrast, such as crystal lite, ding ding ding - artificial sweeteners....) as a trigger for reactions. Also it is not uncommon for 3-4 meds to be given along with any biospy, steroid joint injection or contrast infusion. And I highly doubt those meds (ie triggers) are disclosed ahead of time or reported in the medical report after words. They will likely be listed in the nurses notes, but you have to know where to find them.... I don't want to be an alarmist, but I have many concerns with common practice in radiology clashing with the likely volatility of a mast cell patient. Do you know if anyone in the medical profession has taken a similar interest? My concerns are coming to light as I learn more about mast cell issues, and stretch into common practices in any diagnostic area, including radiology, cardiac cath suite, GI diagnostics, radiation oncology, orthopedics, surgery, ED. I know you are connected with lots of people in the triad world, so please keep me in mind if you find others with similar interests. I have seen that GI article and it describes me as well. Thanks for sharing. Point well taken regarding leakers or shockers. I will be more careful in the future. Keep building the network and before you know it we'll get to the next level! Thanks for all your hardwork! Lyn

Here is a great brochure on emergency care on TMS, and on the second page describes the 4 stages of anaphylaxis. Will post anohter great resource when I find it. http://www.tmsforacure.org/documents/TMSERBrochure.pdf

Thanks. Funny thing is how I didn't think it described me, not until my flushing and GI issues came back with a vengence... I also am surprised to learn about the clincal diagnosis of anaphylaxis and its 4 grades. I too only recognized hives, angioedema, and respiratory issues with full blown anaphylaxis. So sad, since I worked in healthcare for 20 years before getting sick, the first ten years on the front line,and the last ten years as a patient safety advocate within my health system. One of my previous projects involved finding and understanding everyting could find on contrast reactions in the published literature and governing documents. There is very little on anaphylaxis and contrast and I can assure you nothing that fits low grade anaphylaxis and contrast. And contrast may not be our only concern, as many times a coctail of meds is adminsitered during various procedures. Will need to look for list of 4 grades of anaphylaxis. I read or heard somewhere in an interview scenario where the docs call patients shockers and leakers. If I run across it again, I'll post. I'm thinking it is either in transcript for several of the presentations I've been reading over, or its in the You Tube videos given by the top researchers. I've been contacting friends and family who work in healthcare and getting an idea of what they know about anaphylaxis. An EMT and a paramedic only learned about the full blown version of anaphylaxis the way I always understood it. They didn't know there are grades. Same thing with an ICU/NICU nurse. This is important to note because without hives, angioedema, respiratory distress -which many of us don't have-, could explain why we aren't effectively treated in a ED/ICU/ or in the field. And a note by one of our mast cell doctors won't likely trump established protocols for anaphylaxis (Epi, IV benadryl, or airway management), at least until the ED takes over. Mast cell triggers can be medications (entire classes cause this dump),contrast media, foods, spices, heat, cold, steam, stress, activity/excercise, histamine high foods, food and med colorings, allergens, lack of proper sleep, etc. Julie, you are right. I stand corrected. I didn't mean to imply this has only been around a year or so. Mast cell activation as I understand it has been around for years in the research world and it has only been the past several where it is moving into the clinical world. Dr Afrin has been diagnosing and treating since 2008, and the B+W group much longer that. There are multiple publications out there that dance around the concept of misbehavin' mast cells, but in the last 18 months, momentum has been building with the release of several consensus publications, laying the groundwork for MCAS to be established as a true and legitimite disorder/syndrome. My main reason for posting this is to point out how on first blush I didn't even consier mast cells as a potential trigger. My sensitivities were in "remission" of sorts. But the minute they came back with a vengence, I know were to turn! Thanks to all the previous forum posts and links on this site, which brought me to other sources of fantastic information.

I hope that some of our resident-experts chime in, but I thought I'd share some of what I've learned so far. Eight weeks ago, I only knew what I read on this forum about MCAD, and I didn't think that I fit into what I read. Then I learned differently. Now that I am in the process of being diagnosed with MCAS, I'm finally able to see how mast cells are really at the crux of my symptoms. Unfortunately, this disorder is still in it's infancy so there is much to be worked out. WHO diagnosing guidelines have yet to be finalized and published. A wonderful place to start is with basic descriptions of symptoms, treatment options and emergency plans at The Mastocytosis Society website at www.tmsforacure.org. I won't go into those basics, but I will do my best to give you a concise description of my symptoms and how mast cells may be related to those of us with dysautonomia. MCAD is also called MCAS, which stands for mast cell activation disorder/syndrome. Mast cells are an important part of the immune system. When there are too many mast cells, this leads to a diagnosis of mastocytosis, a rare hematologic disorder. When symtoms are severe enough and there is suspision that mast cells are misbehavin' and causing the trouble but the mastocytosis criteria has NOT been met, a patient will likely get a diagnosis of idiopathic anaphylaxis, chronic or acute urticaria or other skin related diagnosis. Very recently, researchers have found that there are a boatload of patients that do not meet the mastocytosis criteria, mainly because the mast cell count/mass burden is fine, but have pretty significant symptoms of mast cell activation. So in between these two diagnoses lies the vast world of mast cell activation. Mast cell activation mainly means that for some/many reasons these mast cells are triggered to degranulate or dump (anywhere between 200-300) mast cell mediators (chemicals, proteins, trypase, heparin, prostaglandins, cytokines, etc) into the body. This massive chemical dump is essentially at ground zero for causing many symptoms and very easily can mess with the autonomic nervous system. Symptoms greatly vary due to which of those chemicals are dumped into the system. While there are over a hundred symptoms that are tied to this disorder, certain symptoms are screamimng "misbehavin' mast cells", such as flushing, hives, weezing, previous anaphylaxis, food allergies and sensitivities, environmental sensitivities (especially to fragrence, petroleum, detergents), multple chemical sensitivity, medication sensitivities, wierd rashes, and low blood pressure, amond dozens of other symptoms. Patients will often have worse symptoms when off meds, during flares, and often need more meds. When mast cells degranuate, this sets off a series of worsening symptoms. This domino effect is also known as anaphylaxis. Some people leak these chemicals and are called leakers, while others dump them pretty quickly and are known as shockers. Shockers go into anaphylaxis relatively easy and often without immediate treatment. Several of us who leak describe our episodes as low grade anaphylaxis, and I have done both. I personally flush, with no itching/hives, blurry vision, brain fog, tachycardia, get explosive D or Vomiting, migraine, and have severe orthostatic hypertension on sitting with plummeting orthostatic hypotension on standing. These episodes meets the clinical definition of anaphylaxis. Mast cell researchers feel that misbehavin' mast cells may likely be the cause for autonomic dysfunction, and is commonly linked to POTS patients. Interestingly, there is a third type of illness, related to connective tissue disorders and anneurysms (ie, EDS, Marfans') which are also tied to misbehavin' mast cells. Diagnosis is incredibly hard to get, since there are only a few precoius docs in the country who recognize this new disorder. It was only named last year. Right now diagnosis depends on a thorough system by system history by a mast cell specialist, ruling out mastocytosis and other differentials, and looking for one of these mediatiors in urine during an episode (they have a short half-life and are hard to catch). A few docs recognize that with a specific constellation of odd symptoms and sucessful treatment can show MCAS for now, at least until better testing comes out.

Yes.

Julie, Thanks so much for sharing this information, as it fills in some of the missing pieces in my journey as well. I have documented elevated insulin levels and plummeting sugars, but not absolute hypoglycemia. High carbs are an issue for me too, and am about to revisit allergies and food intolerances to see if wheat and gluten are triggers. Will keep carb levels in mind. Has anyone figured out what constitues high carb for them? Months ago, I realized that I am much more sensitive than the general carb guidelines for diabetics. I do ok with about 15 g (one piece of bread) per meal, and if good for a few days, can sneak in a extra 15g. Anything over that and I pay the price later. Thanks, Lyn

Bruc, YES

So glad to read of your reprieve, Katie!!!

Alicia, Have you considered that these reactions are maybe triggers and not allergens? This may not sound like a big deal to know the difference, but if you didn't test positve for these foods, maybe there is a different reason you can't tolerate them. Allergens cause allergic reactions modulated by an increase in IgE, which is one of the things measured to determine if you are allergic to them. A trigger may cause a reaction but could be due to being high in a sppecific protein or chemical you are unable to break down. For example, foods high in tyramine, sulfites, sulfates, MSG, nitrates, nitrites, can trigger migraines. Foods high in histamines, such as aged cheeses can cause nasal congestion. Dairy products can cause IBS type symptoms, cause you can't process molecules, as in lactose intolerance. I have found benenfit in taking digestive enzymes and probiotics at times to help me be able to digest foods. Good luck in sorting our your issues with food. It is really tough when food is your enemy. Keep up the investigation! Lyn

When my Vit D was first tested several years ago, it was 9, then after 50K IU for a year or so, got it up to near 100, then told to stop taking. Two years later, value was back down to 13, so back on 50K IU one a week.

Bruc, I sure hope NOT! Did you hear something or is there some confusion in the mix due to Dr Jaradeh leaving for Sanford. I see Dr Barboi this week.

Not confirmed, just suspected mast cell disorder at this point. I have been taking cetirizine (generic zyrtec), and ranitidine (generic zantac) and have noticed a shift in my symptoms.

Has anyone run across the concept of breathing excercises similar to yoga style breathing to boost parasympathetic activity?

Sue, Sounds like we have taken a similar medical path. I spent months on this quest to understand my issues with food that ultimately lead to reactive hypoglycemia which lead to months of trying to capture an actual hypo, but only catching the drops/plummeting glucose levels. You on the other hand do get actual hypos. Early on, my Mayo trained endocrinologist suggested that an old diabetic med called acarbose could be used to help, but she didn't recommend it just yet for me, just offered it in case i was willling to take it. She did warn that there are significant GI related side effects documented for this med. I chose to not try the med and pursue insulinoma as a possible cause of my dropping sugars. Fast forward three months, my autonomic neurologist feels my plummeting blood pressures trigger the sugars to drop in a sort of exagerated stress reaction. We are now pursuing what is making my blood sugars plummet. Profound flushing and hives have lead ot a work up for mastocytosis. I've been reading up on mast cell disorders and many of my weird symptoms can be explained with misbehaving mast cells. Just started with the work up. Also learning about the difference between food allergies and food triggers and the clinical guidelines on anaphylaxis. This is a whole new world.... Best wishes, Lyn

Hi hil, Since you have 2 marginal TTTs, have you documented elevated HR on standing with home BP machine? The folks on several mast cell related websites are pretty convinced that POTS/other autonomic symptoms/CFS/Fibromyalgia are/can be symptoms of a mast cell disorder. These home BPs could possibly be used as a baseline, to help you and your doc figure out when you reach a therapeutic level of your MCAD meds. On several posts, I've read that symptoms (specifically cardiac and GI) should begin to settle in then the rest of the symtoms with med tweaking. Have you thought of adding a second dose of your zyrtec? Stay strong. Lyn

Hi hil, The more I learn about mast cells and the 300 plus chemical that are released during degranulation, the more excited I get with this possible explanation. I've read, whacky mast cell and release of their mediatiors could explain severe environmental sensitivities, goofy BP, abdominal issues, sinus issues, brain fog, headaches, vertigo, lightheadedness, tinnitus, rashes, fatigue and the list goes on. Maybe you need different meds? Your H1 seems lower than the doses I've been reading about, but I am so new to this. It is pretty tough to sort out the Dysautonomia from mast cell symptoms, and at some point maybe it doesn't really matter, which came first, the chicken of the egg. Not sure yet. Hope you can figure out some things and get out of bed. I know I was bedridden for 9 months and it has been the hardest struggle of my life being able to function minimally again. Best wishes, Lyn

Am I the only one on here without a POTS diagnosis (got autonomic neuropathy), who is chasing down a possible mast cell diagnosis??