DoozlyGirl

Altruism, After blood and urine labwork to rule out pheochromocytoma, cushings, carcinoid (which are necessary before starting the path down MCAS), and other neuroendocrine causes of whacky catecholamines, I had a tryptase taken during one of my reactions (to rule out systemic mastocytosis), then skin biopsy of an area of deep flushing on my upper chest/lower neck to rule out cutaneous mastocytosis. This then opened the door for considering mast cell activation syndrome. I did not have other tests until seeing a mast cell specialist, as these tests are often performed incorrectly to find postivie results for MCAS. It took two trips out of state to catch my elevated mast cell mediators. I'm not sure of your list there, as most mast cell docs do not order a BMB unless they highly suspect systemic mastocytosis. A BMB will not likely show MCAS. If you have ever had any GI biopsies, then those can be restained looking for mast cells with a CD 117 and/or CD 25 staining. Many are finding that these biopsy slides are reatained by the local hospital for up to a decade, so this may be a good option. Best wishes, Lyn

Bebe, Thanks for the additional information. I used to degranulate every day due to my meds, and the best way to describe it having a killer hangover, the worrst flu and my worst period all at the same time. So we have that in common. When you constantly degranulate, you rare constatnly dumping all those inflammatory chemicals into your body and setting off all sorts of cascades of more chemicals. The goal for now, would be to see if you can get the constant symptoms to occur in episodes, so they have a beginning and ending. This is what I did, and it proved my issues waxed and waned and I did not have PAF or MSA, as my autonmic docs were thinking. I am uber sentitive to dyes, chemicals and preservatives in everything, from my meds, to food to personal care products to household cleaners. Once I figured that many of these things degranulate mast cells, I knew I was on to something. Yellow dye (think food coloring) one drop on my tongue sets off cardiovascular anaphylaxis in me within 10 minutes. Other things, like red and blue dyes, gluten, and dairy take longer but can set off slower reactions. My slower reactions start off as belly pressure, bloating, constipation, overall puffiness, GERD, sinuses filling up, tonsils enlarging, headache, flushing, and then tachy, and other Cardiovascular issues if I don't stop the cascades. Look for any FD&C dyes, numbered ones. They are known culprits. I can tolerate the oxine dyes, as they are different in chemical structure. Your anxiety is also likely tied to the imbalance in the your autonomic nervous system. Dopamine and serotonin production and reabsortion/recylcling is tied to cascade of norepi, epi and serotonin production and recycling. In the biochemistry scheme, issues with COMT, VDR and MAO A and MAO B genes (found in 23andMe genome study) could explain this disruption, at least there are a bunch of us with autonomic issues who can pinpoint out specific autonomic issues back to this. Remember that your individual symtoms are based off of your specific biochemistry and may not match others symptom by symptom. But the mechansims of disease/disorder can pinpoint where to look in your own situation. Good luck with everything. I suggest checking out a forum called Mast Cell Disorders Forum, where you will learn some great points about mast cell disorders to guide you. Best wishes, Lyn

Hi Bebe, First of all, welcome. I think you have found your tribe. I was diagnosed with dysautonomia three years ago and suspected mast cell activation syndrome about a year ago. Boy, have I learned alot along the way. Bebe, I was stuck by several things in your posts. First, your symptoms could be attributed to daily/ongoing/ episodes of degranulation. I suspect your betablocker is a likely trigger, as well as OTC and prescription pain meds. Your description of sinus thick goo is exactly what struck my docs early on in my progression. I've had 4 sinus surgeries and had this thick crud, that is different than anything my ENT had ever seen before. I know now that this was due to the histamine releasing continuously due to the meds I had taken for years. Do your headaches come with typical migraine symptoms? Aura and nausea before the pounding starts. Focal pounding with your hearbeat? Can't stand light or sound, must lie flat and not move. You are glad to throw up because then you know they are near the end? Feel drunk or hungover the next day? Or can you tolerate tv, sound, and light during them? Do you feel better sitting up, reclining or laying flat? If they don't meet the typical migraine definition, which I am thinking because our migraine meds don't touch them, then I wonder if they may are a masto headache due to massive release of histamine. I've had just about every type of headache out there. Migraine with and without aura, headaches due to brain tumor pressing on brain, sinus headaches, tension headaches, headache caused by a CFS leak after they had to draw out the CT contrast from a myelogram, orthostatic headache due to CFS leak after epidural, and histamine headaches. And each of them are different in subtle ways, but still different in how I could treat them and how they progressed. Histamine headaches are just as debilitating as any of my worst headaches. I have found that dye free Benedryl liquid gels will help with them. If that doesn't cut the histamine reaction, then I take one uncoated asprin, as this blocks the pathway where prostaglandins are dumped during the mast cell reaction. Zantac and Zyrtec only block the receptors once the histamine is released. Benedryl is a H1, but also is antiemetic, meaning it helps with nausea, will make you sleepy so you can sleep off the headache and has other beneficial properties. You don't want to take Benedryl everyday or very often, since this is one of the best emergency meds to stop mast cell reactions. Xanax is sometimes used to help uber sensitive folks, as mast cells have a benzo receptor, so it is known to tame mast cells. But the metropolol is likely aggravating your mast cells. Oh when you describe BP all over the place are you flushing, or having sweats, swelling and/or tachy at the same time? If you are having a skin symptom, like flushing, swelling, itching, hives and GI issues or cardiovascular issues at the same time, this meets the definition of anaphylaxis. I have only had throat sweeling a few times, but my anaphylactic reactions are most often cardiovascular anphylaxis, where my BP can be stroke level or so low I am barely breathing, while I face a host of other symptoms. Good luck finding your way. Lyn

Hello cheeseheads, Dr Hiner has trained in autonomic, but from what I understand only works part time in the autonomic clinic. The new autonomic neurologist is Dr Juan Figeroa. I just got an email that Wednesday, March 6 from 6-8 in the Community Conference Center on 87th and Watertown Plank Rd, they are having Dr. Juan Figueroa, Autonomic Neurologist speak to the Autonomic Support Group. This would be a great time to check him out and meet him. I plan to be there for that very reason! And yes, I miss Dr Barboi too. He not only nailed my autonomic neuropathy diagnosis, but later recognized my mast cell symptoms as MCAS!! Hope to meet others at Froedtert's Community Conference Room (in the building behind the healthclub, overlooking Eddie Martini's) on Watertown Plank Road at 87th Street. Take 87th St directly into the parking lot on the north side Watertown Plank road. Lyn

Hi everybody, Haven't been on the site much lately, as I am entrenched in learning about my 23andMe SNPs by relearning biochemistry to better understand how diminished enzymatic pathways/methylation are contributing to my ongoing issues. Over the past 6 months, I have become even more convinced that underlying infections are why I am not able to heal, no matter what I have tried to get better. I have significant mast cell activation (immune mast cell disorder), which hijacks my autonomic nervous system during anaphylaxis and less severe during mast cell degranulation. Typical mast cell meds have limited my reactions, but not stopped them completely. My 23andMe data shows significant blockages/diminished capacity of several essential specific enzymatic pathways, and correlated to many of my specific triggers, such as sulfa/sulfites/sulfur based foods, products and meds. Zantac contains sulfur, so I was adding to my issues with that one. My latest "finds" have me looking at heavy metal toxicity. As a former healthcare worker, sick child and even sicker adult, I have been exposed to over 60 innoculations in my lifetime, have a mouthful of amalgams, and have a history of a mystery infection in my childhood, which is long suspected to be CMV/EBV, as I was bedridden for over a month in 2nd grade. I also have ongoing candida yeast issues after minimally successful multiple approaches to treatment, issues point to underlying co-infections and heavy metals, as metals often harbor these bugs, then sets off the immune system into high gear. Methylation issues are often linked to co-infections and heavy metal toxicity as the body can't rid of these things on their own. I read this long informational post the other night, then today got this link through a FB Lyme site. I nearly fell off my chair, as I saw Dr Fry's name and the name of the presenter that Angela posted two days ago. Here is an extened version of the talk Angela posted, presented on January 26, 2013. http://www.betterhealthguy.com/joomla/blog/282-dr-corson-speaks-at-physicians-round-table Check out slide 23 - about the complexities of chronic ill patients. Notice how it states to support methylation. Slide 36 mentions POTS. It also talks about elevated sulfate/ammonia. These are methylation issues tied most often to CBS and SUOX SNPs. Slide 57 gives a pretty thorough approach to dealing with a chronically ill patient, which is similar to what I am reading in the methylation world. This topic is facinating and I appreciate the conversation. Issie, great to hear this is helping you so much. Lyn

JUST GOT AN EMAIL STATING THIS INFORMATION IS CORRECTED FROM THE FIRST ONE I POSTED. Haven't yet figured out what changed with this email. Lyn __________________________________________________________________________________________ The Work of Dr. Amy Yasko Teleseminars Tuesdays at 5:00pm PST, 6:00pm MST, 7:00pm CST and 8:00pm EST The dial in number is 805-399-1000 The participant access code is 380752 Welcome everyone! My name is Tricia Stenzel and I will be moderating this series of teleconferences on "The Work of Dr. Amy Yasko". These teleconferences will be happening every Tuesday evening, 5:00pm PST, 6:00pm MST, 7:00pm CST and 8:00pm EST starting January 22, 2013. As some of you know I used to be an Officer/Patient Advocate with a Lyme Disease Organization. I have had numerous people come to me about why they are not getting well from their various health issues. I wanted to help these people, and I also wanted to recruit the best Doctors in my opinion to help us understand what is going on with our bodies and explain things to us so that we can better heal. I am honored that Dr. Amy Yasko has asked Dr. Nancy Mullan and Mrs. Erin Griffin to help us with this. I would like to thank Dr. Yasko for her brilliant work and for asking us to present these teleconferences. The topic for January 22, 2013 is Your Single Most Important Biochemical Process: Methylation Your body has a "traffic light" for its biochemical pathways. Dr. Nancy Mullan, with Mrs. Erin Griffin, discuss how it can work well, what can go wrong and what that means for you. You can listen to the call and see the slides that Dr. Mullan will be explaining by logging on to https://www.freeconferencing.com/meetings/437-519-566 Enter your email address and name to log in. This one's for YOU! We want your input. We would like you to tell us what you want to know. We want to know if you need something repeated. You can send your questions to patriciastenzel@gmail.com Your questions can be about anything. They do not have to be about the particular week's conference subject. The teleconference will last approximately one hour. There will be approximately one half hour of lecture and then I will have the opportunity to ask Dr. Mullan and Mrs. Griffin your questions. We will be adjusting what we are doing as we go along to make this teleconference the most satisfying experience for you. I urge all of you to listen to this important information. The conference call in number is (805) 399-1000. The participant access code is 380752 This is a US toll based phone number and depending on your long distance provider you may be charged for this call. You may have unlimited long distance. If you do not, long distance charges will apply. All teleconferences will be recorded. Call 805-399-1099 to hear a replay of the teleconference This and other pertinent information will be posted on Dr. Mullan's Facebook page, my Facebook page and Dr. Yasko's Facebook page. I will also be posting the following week's topic for discussion. Mrs. Erin Griffin is the married mother of two sons recovering from Autism Spectrum Disorder. She has been the moderator of Dr. Yasko's CH3 Nutrigenomics Parent Discussion Forum since 2005. She is the go-to person for getting it right when doing Dr. Yasko's program. She is a tireless advocate for patients and is the leader and most prominent of the Cyber Moms, a group of knowledgeable, beautiful, generous, loving women who spend hours each day helping other mothers recover their children. Author, Lecturer, Clinician, Nancy Mullan, MD, recovers patients using the methods of Dr. Amy Yasko. Educated at the University of Pennsylvania, Tufts University School of Medicine and the University of Chicago Hospitals, Dr. Mullan is best known for her genetics based clinical therapeutics. She has written a number of ground breaking papers with Dr. Yasko that can be found under Resources on her web site, www.NancyMullanMD.com . Their most recent paper, Aluminium Toxicity in Mitochondrial Disorders in Autism Spectrum Disorder is posted on their respective Facebook pages. I am honored to be the moderator of this series of teleconferences and urge all of you to please submit questions or topics that you would like discussed to either myself at patriciastenzel@gmail.com or Dr. Nancy Mullan at nancymullanmd@aol.com because we want your input on what you would like to hear Dr. Mullan discuss. We are looking forward to a big turnout! You will not regret the time you spend with us! Sincerely, Tricia Stenzel ");

Zap, I see you are looking into COMT and MAO. May I ask what is your VDR status? Have you looked at your P450 pathways in Phase I? I just read that SAMe is not recommended in my case. But I can't recall where I read it. I am homozygous for COMT, VDR and MAO and homozygous for SHMT, CBS, and MTRR. I thought it was due to my COMT/VDR/MAO status. Hmmmmmmm... Lyn UPDATE: Found it in my notes: SAMe is not recommended for COMT++. Have you seen this before? Maybe you are heterozygous?

Arizona Girl, There are many with POTS/dysautonomia who also have EDS, a connective tissue disorder which one form leads to hypermobility. Depending upon your other methylation defects, even methylfolate may not be the best choice. From what I have read, those with COMT defects tend to do better with hydroxyfolate. Good call on NOT taking folic acid. WRONG choice with MTHFR. If you haven't yet tested more SNPs, then I highly suggest testing with 23andMe or Dr Yasko's panel before you begin supplementation. I have been on several forums where many have jumped into taking supplements and several ended up quite ill, in the ICU and nearly dying. Their message is it is CRITICAL to know your other SNPs before supplementing. SHMT and ACAT must be cleared first, then CBS from what I am reading. I think of it as coming up with the reboot protocol for the movie Apollo 13. Remember when Gary Sinise has to keep going back into the testing lunar module to come up with the protocol and use as little energy as possible? Same thing here. Must bring up certain tasks before others otherwise, trouble. And yes, multiple physicians and PhDs in the know about methylation have stated that methylation issues are inovolved with neurologic, immune and autoimmune disorders. The multiple camps using this concept t of broken biochemical detoxificaiton pathways to sort out various SNPs include autism, CHF/FMS, cancer, parkinsons, Down's, miscarriages, heart disease, Lyme's, various autoimmune disorders, Mast cell, EDS, and the list goes on. Best wishes sorting out your SNPs, Lyn

I am sharing this information from a FB page on methylation and MTHFR. This is an INCREDIBLE opportunity to hear the premier expert on methylation talk about and answer questions in this ongoing teleconference series. Taped versions will be available. Read the long post below with details. Lyn ___________________________________________________________________ The Work of Dr. Amy Yasko Teleseminars Tuesdays at 5:00pm PST, 6:00pm MST, 7:00pm CST and 8:00pm EST The dial in number is 805-399-1000 The participant access code is 380752 Welcome everyone! My name is Tricia Stenzel and I will be moderating this series of teleconferences on "The Work of Dr. Amy Yasko". These teleconferences will be happening every Tuesday evening, 5:00pm PST, 6:00pm MST, 7:00pm CST and 8:00pm EST starting January 22, 2013. As some of you know I use to be an Officer/Patient Advocate with a Lyme Disease Organization. I have had numerous people come to me about why they are not getting well from their various health issues. I wanted to help these people, and I also wanted to recruit the best Doctors in my opinion to help us understand what is going on with our bodies and explain things to us so that we can better heal. I am honored that Dr. Amy Yasko has asked Dr. Nancy Mullan and Mrs. Erin Griffin to help us with this. I would like to thank Dr. Yasko for her brilliant work and for asking us to present these teleconferences. The topic for January 22, 2013 is Your Single Most Important Biochemical Process: Methylation Your body has a "traffic light" for its biochemical pathways. Dr. Nancy Mullan, with Mrs. Erin Griffin, discuss how it can work well, what can go wrong and what that means for you. You can listen to the call and see the slides that Dr. Mullan will be explaining by logging in with your computer and clicking on http://www.startmeeting.com/ We are stunned by the amount of resource being poured out on therapeutics that are not getting you well, in fact that are making some of you significantly worse, not to mention that the mainstream is completely ignorant about your issues and has left you for dead. We are eager to make this conference be the most helpful it can possibly be. This one's for YOU! We want your input. We would like you to tell us what you want to know. We want to know if you need something repeated. You can send your questions to mailto:patriciastenzel%40gmail.com Your questions can be about anything. They do not have to be about the particular week's conference subject. The teleconference will last approximately one hour. There will be approximately one half hour of lecture and then I will have the opportunity to ask Dr. Mullan and Mrs. Griffin your questions. We will be adjusting what we are doing as we go along to make this teleconference the most satisfying experience for you. I urge all of you to listen to this important information. The conference call in number is (805) 399-1000. The participant access code is 380752 This is a US toll based phone number and depending on your long distance provider you may be charged for this call. You may have unlimited long distance. If you do not, long distance charges will apply. All teleconferences will be recorded. Call 805-399-1099 to hear a replay of the teleconference This and other pertinent information will be posted on Dr. Mullan's Facebook page, my Facebook page and Dr. Yasko's Facebook page. I will also be posting the following week's topic for discussion. Mrs. Erin Griffin is the married mother of two sons recovering from Autism Spectrum Disorder. She has been the moderator of Dr. Yasko's CH3 Nutrigenomics Parent Discussion Forum since 2005. She is the go-to person for getting it right when doing Dr. Yasko's program. She is a tireless advocate for patients and is the leader and most prominent of the Cyber Moms, a group of knowledgeable, beautiful, generous, loving women who spend hours each day helping other mothers recover their children. Author, Lecturer, Clinician, Nancy Mullan, MD, recovers patients using the methods of Dr. Amy Yasko. Educated at the University of Pennsylvania, Tufts University School of Medicine and the University of Chicago Hospitals, Dr. Mullan is best known for her genetics based clinical therapeutics. She has written a number of ground breaking papers with Dr. Yasko that can be found under Resources on her web site, www.NancyMullanMD.com . Their most recent paper, Aluminium Toxicity in Mitochondrial Disorders in Autism Spectrum Disorder is posted on their respective Facebook pages. I am honored to be the moderator of this series of teleconferences and urge all of you to please submit questions or topics that you would like discussed to either myself at mailto:patriciastenzel%40gmail.com or Dr. Nancy Mullan at mailto:nancymullanmd%40aol.com because we want your input on what you would like to hear Dr. Mullan discuss. We are looking forward to a big turnout! You will not regret the time you spend with us! Sincerely, Tricia Stenzel

Sue, Sorry it has taken me a while to get back on this forum. Dr Kendal Stewart mentioned that the test for these antibodies to folate receptors is very expensive, so he starts with folate testing and uses the patient history to determine if these autoantibodies are at play. If you watch Kendal Stewart's You Tube videos, there are 5 of them in 15 minute increments of a talk he gave last year in Charlotte, NC on MTHFR and methylation issues and neuroimmune disorders, you will hear his comments on these autoantibodies. Lyn

Issie, I've read that a GF and CF diet limits inflammation and as a added bonus, those with antibodies to folate receptors (somewhat common with chronic illness per Dr Kendal Stewart who links it to many neuroimmune disorders, way beyond Autism.) have to cut out casein. Can't find the source article right now, but here are a few links on the topic. The risk factor is highest in those who were NOT breastfed as a baby, as they tend to have these antibodies. Dr Quatros is credited with the original scientific work. Dr Stewart tests folate in blood to ascertain liklihood of these antibodies to folate receptors. Lyn http://www.mombu.com/medicine/medicine/t-folic-acid-receptor-autoantibodies-vitamin-d3-and-milk-consumption-in-autoimmune-disease-autoimmune-diet-cancer-estrogen-5916411-last.html http://questioning-answers.blogspot.com/2012/01/dont-panic-folate-receptor.html http://www.thestaracademy.co.za/wp-content/uploads/2011/03/cfa-and-autism-rossignol-quatros.pdf

And to add to this conversation, Dr Afrin has recently been awarded a grant to study gulf war syndrome and conncetion to mast cells. Now this is getting interesting! Lyn

targs, Found this tonight. It is a sample report from Genova Diagnostics for P450 and methylation genes. Check out the red writing on the left hand side of the page. Points out specific meds that are associated with various polymorphisms. http://www.healthremedies.com/_uploaded_files/detoxigenomic_profile_.pdf Lyn

Hi targs, I have several homozygous and several heterozygous CYP 450 defects. Haven't figured out what to do about them yet, but have learned that CYP 1B1 is responsible for breaking down estrogens, which corresponds with my personal history. 23andMe data show I have a homogygous (complete blockage) for a gene responsible for metabilizing 20 percent of common drugs, specifically a bunch of pain meds. I also have a partial blockage for detoxifying alcohol, ethanol, acetone, PEG, cig smoke, benzene, which is worse when I have had alcohol or haven't eaten. This totally makes sense for me. So I've been connecting even more dots with 23andMe. Issues with vitamins can come from issues within the 4 methylation cycles that Dr Amy Yasko has studied. Likely not taking in the correct form or amount of vitamin that your body actually needs to enhance functioning. Some can't take folate or folinic acid, but do better with methylfolate, depending upon your own body chemistry's needs. Lyn

Sue, I am not familiar with the article you mentioned. Do you have a link or place fo rme to look for it? The Vit D Receptor (1,25 - dihydroxyvitamin D3) SNPs in Dr Amy Yasko's list of SNPs affecting methylation tested by 23andMe includes: VDR known as bsm/taq with an rs ID 1544410 C or T are the alleles with T being the risk allele. VDR (no reference initials) with an rs 731236 A or G are the alleles with G being the risk allele. Have you checked out your Methylation SNPs yet? I am learning that there is much more to this than just treating with methylated forms of the appropriate B-12 and folate. MRHFR is only the tip of the iceberg. COMT and CBS SNPs must be cleared/bypassed before treating MTHFR and MTRR. If you have GI issues like malabsorption/leaky gut or infectious agents, then those must be addressed first. Best wishes connecting your dots... Lyn

I found out my BP dropped during mast cell reactions called mast cell degranulation. If the HR doens't rise with the plummeting BP, then that compensatory mechanism isn't working. For me, I get the plummeting BP and only get the rise in HR about half the time. Best wishes connecting the dots. Lyn

If malabsortion is an issue, and tanning is out of the question, then consider taking a form of D2 that bypasses digestion. There are subligual drops and lotions that will do just that. I have always had low Vit D. Long before I learned of the differences between D3 and D2, I supplemented with 50K IU prescription Vit D and my levels only minimally raised until I alternated D2 and used up my stash of prescription D3. I just recently learned through 23andme genome testing that I have 2 broken biochemical pathways that make Vit D. I am still trying to figure out how to overcome this, as taking a Vit D in tablet form is not the answer for me, that I have to fix the broken biochemistry and get my body to be able to support this function. I'm learning how to bypass these genetic transcription errors called SNPs (single nucleotide polymorphisms) with nutrition and supplementation. Maybe this is why others have such low Vit D levels??? Lyn

I've learned the hard way that inappropriate antibiotic use can mess up with your body's ecology, most evident showing up with a dysfunctional gut. I would stay away from PPIs (proton pump inhibitors) and other meds that changes the pH in your stomach, and makeup in your digestive system. As Katie mentioned a good form of probiotics is a great place to start. I've always been told that a refrigerated one with multiple strains are best. I'd start with a lower count one and work your way up to a "stronger" version with more strains, as you will likely have symptoms at first, as the yeast begins to die off. I also use digestive enzymes to aid in my digestion, especially during times I have heartburn. If you are interested there are several great natural/herbal supplements out there to treat yeast overgrowth and resolve heartburn. It's also important not to feed the yeast as they live off of sugar, carbs like pasta, bread, etc. Look up candida (type of yeast most often causing thrush) diets and you''ll find lots of information online. You have a good chance to stop this soon, before the yeast travels further down your digestive system. I learned way too late and ended up with systemic yeast overgrowth, which is so much tougher to resolve. William Crook, MD has lots of books and resources on candida yeast and how to get rid of them. Best wishes clearing this up. Lyn

Hi Katie, I'm so glad you are connecting more dots. Congratulations for this milestone. I hope this can bring you relief. EDNF Forum http://www.inspire.com/groups/ehlers-danlos-national-foundation/ EDS Organization - great resource http://www.ednf.org/ Take Care, Lyn

Another fascinating and informational documentary on the power of real food. Has anyone gone raw in treating their dysautonomia/EDS/mast cell disorder/histamine intolerance? Or at least upped their content of raw food? How about trying these superfoods? I have already given up the vast majority of the processed, boxed, dead foods I used to eat, greatly eliminating my exposures due to the chemicals, additives, colors, preservatives that make me anaphylax. I'm looking to take my nutrition to the next level and appreciate hearing how nutrition and supplements have helped you manage your dysautonomia/mast cell symptoms. Thanks, Lyn http://www.foodmatters.tv/2012-Free-Screening

Congratulations, Kelly! I have also been diagnosed with Dr Afrin this year, after my autonomic neurologist witnessed one of my massive flushing episodes, immediately knew histamine was involved. By way, he was way up on mast cell activation. I'm not sure what Rama is referring to, but I've read plenty about Dr Grubb believing there is a strong link between HPOTS and MCAS, from patients who have been diagnosed with both. And on the mast cell and EDS forums, there are several MCAS patients seeing docs at Vandy who have put all three of these disorders together. This point amuses me, because several endos had a hard time believing that autonomic neuropathy was a valid diagnosis in the beginning, until I educated them. stv, Maybe Dr Escribano in Spain or Dr Valent in Austria could help you, both are on the medical board for The Mastocytosis Society , along with Dr Afrin. http://www.tmsforacure.org/medical_board.php Dr Castells and Dr Afrin are widely recommended by MCAS patients, but there are others in the world who are open and paying attention. Note that several docs on the list above focus their practice on systemic mastocytosis, a different varient from MCAS. NIH and Mayo Rochester fit that category, but patients have had great success with Mayo Scottsdale in connecting some dots. Best wishes, Lyn

I believe this product came out sometime this year. So complex.....

During my TTT, my systolic (top number) BP dropped 38 points. Immediately after my diagnosis of autonomic neuropathy and orthostatic hypotension, my autonomic neurologist wanted me to do orthostatic BPs at various times of the day and evening and he only wanted me to wait a minute or two between each position. He asked me to log my vitals so he'd have a better understanding of my fluctuations. At that time, I had a pretty consistent pattern: Normal BP while laying, high BP while sitting and plummeting BP while standing. Conventional medicine defines that orthostatic BPs are taken 5 minutes between each change in postion, but as those who diagnose autonomic disorders have figured out, that procedure often misses fluctuations in patients with autonomic dysfunction. During orthostatic BPs, it is important at some point to capture BPs going out up to 30 minutes while standing, as some will find plummeting BP long after first standing. Lyn

Dr Chelimsky at Froedtert Hospital and Medical College of Wisconsin, formerly of Case Western Reserve, is very interested in connection between migraines and dysautonomia, and here is a recent publication on Syncopal Migraines. http://www.ncbi.nlm.nih.gov/pubmed/21847710 Lyn

Hot water, friction from the razor and water pounding on skin, as well as personal care products used in the shower have all been attributed to mast cell degranulation. As mast cells are triggered and histamine is released this can possibly explain burning and itching, as well as initiating a cascade of mediator release and leading to other symptoms. I found a dye free, natural face gel, that I use as a shave gel, and use cooler water and sit in the base of the tub, as well as timing of my meds (so I premedicate with antihistamines) prior to showering.