DoozlyGirl

Congratulations to anyone who has figured out what works for them. Most importantly, I have figured out what doesn't work for me. I have gone into anaphylaxis from excercise/heavy activity, known as post-exertional anaphylaxis. I have had many physicians tell me to be patient - that we must first figure out why and fix it before I can safely excercise. I have recently been confirmed to have MCAS and my mast cell specialist told me it will take a while before my mast cells will allow me to excercise without symptoms. I first have to stabilize my mast cells with antihistamines and other mast cell medications. So while excercise is beneficial for some, it could be life-threatening for others. One size does not fit all.

Puppylove, I don't know if this describes what is happening to you, but I recently connected some dots as to my hypovolemia and swelling in my legs. I have recently been confirmed to have MCAS, and as I understand it, histamine and other mediators (which are released during mast cell degranulation) can cause the vasculature to become very pourous. The liquid part of blood, plasma, seeps out of the veins and settles into the tissues, is known as 'Third Spacing'. This loss of volume in the vasculature can occur very rapidly during anaphylactic shock, or slowly leak in degranulation, ultimately leading to hypovolemia and orthostatic hypotension. Tachycardia will occur as the heart tries to compensate for this volume loss by speeding up to pump the blood throughout the body. Before urinating out that lost volume, the lymph system must first process it, and can take several days. Benedryl works very well for me to lose the swelling. At one point, I was consistently wearing shoes a size bigger, but now that I am on MCAS meds, I wear the size I wore before getting sick. I have learned to identify early symptoms. I recently had an episode of extreme tachycardia >180 bpm, which was triggered very quickly. I knew enough to stop what I was doing, sit down on the ground, begin chugging 2 bottles of water with several salt packets added (which I carry with me everywhere I go), took a Benedryl and a Zantac, and lay down with my legs up on the wall (trendelenberg). Within 10 minutes my HR was normal, and I didn't have anymore symptoms for the rest of the day. Best wishes in connecting your dots. Lyn

azmusic lover, My pleasure. I don't want to burst your bubble, but the docs at Mayo are not yet fully onboard with MCAS. Drs Butterfield and Weiler (both at Rochester) are very much in the systemic mastocytosis camp. Just last week, a friend,with confirmed MCAS was rejected by Dr Weiler as a potential new patient. If you are heading to Mayo in Arizona, Issie has had some great experiences there, regarding MCAS. Definitely bring the Mastocytosis Chronicals, newsletter from The Mastocytosis Society website www.tmsforacure.org as well as a few publications on MCAS. Best wishes at Mayo and please keep us posted on your progress. Lyn

Thanks, guys! I was stuck in limboland for so long and chased down so many things, it is hard to believe I now made ot to the next level and have so many more treatment options at my disposal. I have to say, even with all the mast cell stuff on this site, I never saw it as core of my issues, until Mack's mom sent me a few messages and got me to be open to it. I'd like to do the same for any of you out there with odd medication or food reactions, irregular BP, GI issues, crazy rashes or flushing (doesn't necessarily have to be hives or by itchy) episodic type symptoms or even continuous, as continuous could just indicate daily low grade reactions, and if a Benedryl, zyrtec, zantac or any other antihistamine ever made you feel better, then please consider mast cell. I had to study it for months before I could connect the dots. And now that I have learned how to interpret mast cell, I can connect even more dots. My positive mediator testing is just confirmation that I am on to something! Experts believe that misbehavin' mast cells are at the core of numerous ailments and diseases, including autoimmune diseases, cancer, aneurysms, connective tissue disorders, alzheimers, autism, CFS, fibromyalgia, etc. Personally, I feel that POTS cases that are isolated to tachy and syncope, may not be a part of this, as it likely has a separate mechansim, but for those of you with systemic and crazy out of control symptoms, then it would be wise to at least consider if misbehavin' mast cells are involved with your symptoms. Kluesyk, Dr Afrin reminds me more of a scientist thatn a physician, because he is so drawn to the mechanisms and molecules. I was also impressed, and can't wait to read his treatment plan for me. Katie, you'll get there. You have made some great progress yourself! Kim, I've dreampt of getting back on the grid, but know that I am able to do it, I'm finding it odd. The world has gone on without me and now I have to figure out what I really want. I know what I don't want. I don't want to live the same high stress, fast paced, superficial life, I had before. I want my new life to have more meaning with deeper relationships, and my situation is yeilding much stronger relationships. Call it a silver lining. Christy, how high were your son's heparin levels? Are you going with Dr Theo's quercetin or a different formulation? Has the doxepin helped, and for what symptoms? I am so glad Dr Afrin has figured out some answers for your son. He won't rest until he finds that right med regimen for him. Naomi, your right I never gave up. For nearly 4 decades I knew something was wrong. Over the past 20 years I had seen over 100 physicians. But it took a neurologist, dematolgist and a hematolgist to get me to this place. Treatment is already working, yeah! Now I just have a few things to work on. Songcanary, I'd love to hear more about your sulfite issues. How did you figure it out, other thatn avoidance, have you found anything that helps? Are you intolerant of sulfa meds (antibiotics and others)? Thanks Corina. Like a dog with a bone......I am most excited being able to get off the forums a bit and live a little! You all have meant a great deal to me and I with you the very best in connecting your own dots, Lyn

Issie, Thanks for th einofrmation. I really appreciate it! I don't do well gluten free (similar to Julie), but don't do well with yeasty breads or pasta, which is likely due to my candidiasis, which flares with more than minimal amounts of bread or pasta at a time. Tested negative to gluten blood tests and gluten IGE and oral challenge, but mildly positive for wheat on IGE. I don't do well with milk, ice cream, and aged cheeses but love almond milk and can tolerate fresh/young (low histamine) cheeses like fresh mozzarella, farmers and feta. I rotate my fruits and veggies and try not to overload any particular element. Will now consider sulfa in the rotation. When i was thoroughly tested for food allergies about 5 years ago, my allergist was adament that I consume small amounts of my "allergic foods" in small doses on a regular basis, so my body doesn't lose the digestion pathyways and enzymes to break down those components. But it was a challenge to not overload. I can eat a small amount of tomato once or twice a week, but not more. I change up my potatoes, rotating between yams, russett, red, and yukon gold potatoes, eating them once or twice a week. I don't eat canned fish, and stick with frozen fillets of white fish, like haddock, cod or tillapia. I tolerate red or yellow bell peppers and sweet peppers and serano, but only eat once or twice a week, rotating them. Been wondering about nightshade family, but I seem to do ok with them (at least compared with foods that I obviously react to). I can't drink wine, beer or dark liquiors without major issues. I can tolerate a clean vodka, without too many issues except flushing. I figured out my sulfite issues through Irish whisky and wine. And I have had the most issues with MSG. What type of symptoms do you get with sufites, sulfa?? I have saved all the MTHFR emails and plan to go back and research those issues once I stablize a bit with my mast cell regimen. Interesting because I have allergy tested positive for phenols. i was on injectable B-12 for a while, but it made me feel awful and I could never tolerate iron or folate pills. Something to look into... I really appreciate the information. Thanks again, Lyn

Issie, I haven't yet focussed on foods with sulfites and sulfa, except removing the dyes, which I leanred caused issues with methylation. Can you tell me which foods I am eating that are high in sulfa/sulfur? I have been so focussed on the mast cell stuff, this is on my to do list. Maybe this could get me to the next level. In the beginning, I had issues with Zyrtec (took 3 the first day and crashed really hard, but I was only following Drs orders), but did ok with a dye free version/Brand at a slow taper. I find Claritin not strong enough, same with pepcid, as I have much more breakthrough. But I do well when I layer in my antihistamines, and mix it up a bit. I don't take high doses of zantac/zyrtec due to side effects(hair falling out and withdrawl symptoms and itching). Now I can take 20 mg hydroxyzine, zyrtec and/or 25 mg Benedryl without sleepiness. I tolerate an occaisional asprin very well, as long as I take my Z/Z first. I've been very leary of loading up on the supplements, since I reacted to many in the past year. Vit D3 is supposed to lower TNF, so will be finding a decent one. I don't tolerate zyflemmend, which I read is similar to tumeric, so have yet to try it. Quercetin, is also on my list to try. Dr Afrin hasn't seen much success with it and a bunch of his patients trigger from it. Probably the salicylates, I suppose?? Also read that those supplements encourage blood thinning, so may have to forgo, since I have high levels of heparin. Thanks again for the heads up on sulfa in foods. I look forward to your response. Lyn

Thanks, Chaos.

Issie, I take Zyrtec, Zantac, and Levoxyl upon awakening. I take Zyrtec or Allegra and a Zantac or generic pepcid during the day for breakthrough, depending upon the symptoms. And I take hydroxyzine, zantac, singulair, and progesterone cream at night before bed. I take diphenhydramine for escalating symptoms and occaisionally an asprin for headaches that won't go away with the other meds. My diet is pretty simple, oatmeal, fruit and almond milk for breakfast, and protein, such as nuts, fresh cheese or lean meats and lots of veggies for lunch and baked chicken, fish or lean beef with salad or veggies for dinner. I eat eggs once or twice a week, usually in an omlette. I eat just about any vegetable, rotating foods so I don't induce allergies. I also rotate my fruits, but keep high histamine foods at a minimum. I grow my own lettuce, garlic, peppers,raspberries, tomatoes, 10 different herbs and onions and pick my own organic apples, strawberries and peas. I make my own applesauce, tomato sauce, and freeze, as well as freeze herbs for winter and all make my own sauces, marinades and gravies. I also make fruit smoothies, sorbets and gelato type frozen fruit for snacks. I drink tons of water. My cheat food, which I am craving lots this summer is iced tea, but I limit it and drink only when non-symptomatic. I avoid artificial sweetners, dyes, preservatives, fast food, junk foods, soda, and limit consumption of bread, wheat, sugar and high glycemic foods unless I eat protein with it. It's taken lots of trial and error, but it seems to be working for me.

Hi all, I haven't posted much here lately because I have been consumed with chasing down my mast cell symptoms. I first learned about mast cell as a potential cause of dysautonomia about 10 months ago on this site. My autonomic neurologist suspected I had mastocytosis after he witnessed one of my episodes where my face and neck was all red and blotchy, my BP was really high, and my speech was labored. He sent me to a dermatolgist, who ruled out mastocytosis, but I continued to pursue Mast Cell Activation Syndrome. Eventually I ended up seeing Dr Lawrence Afrin, hematolgist/oncolgist at the Medical University of South Carolina, and a leading mast cell specialist in the US, who agreed I had MCAS. After two visits to Charleston, SC, and 25 tubes of blood later, we captured laboratory proof of mast cell mediators during one of my episodes, which proves mast cell degranulation. There are over 200 different mediators, or chemicals that are released during mast cell degranulation and episodes can lead to anaphylaxis, a life-threatening situation. Only a handful of mediators can be tested with current technology. I have had so many tests run over 2 decades of chasing down my symtoms, but have never had the tests that confirmed this diagnosis. My heparin levels were in the range that patients on therapeutic levels of anticoagulant therapy have. My tumor necrosis factor (TNF) was 14 times upper range of normal, and my neuronal specific enolase (NSE) was 1.5 times the upper range of normal. These tests are all mast cell mediators released during mast cell degranulation. Since heparin is only made by mast cells during degranulation, patients with normal mast cells don't make heparin. My other two elevated values show massive inflammation, and are elevated with cancer or autoimmune disorders as well as chronic mast cell degranulation. This all explaines why I bleed, am red like a tomato, black and blue all over and puffy like the Pilsbury Dough Boy, and am often accused of drinking, when I gave up alcohol long ago. This now connects the dots and explaines why my body can't regulate my BP, HR, body temperature, sweating, blood sugars and insulin levels, as well as catecholamine, neurotransmitter and hormone levels. No wonder I have been so ill. I have spent the past several years facing daily anaphylaxis, until medication stopped the continuous reactions. I can stop my excessive uterine bleeding, headaches, plummeting BP, tachycardia, hypovolemia, 3rd spacing/blood pooling in my lower extremities, flushing, shivering, hives, vomitting, and other symptoms with dye free diphenhydramine (generic Benedryl). I am now sleeping better, can awaken in the mornings, leave my house, drive close to home, meet friends out for dinner, and walk steps. I am on a MCAS regimen of H1 and H2 antihistamines and an anti-leukotriene, low histamine diet, and use low salicylate personal products. I still have a long way to go before I am back to my pre-crash days, but I am much better off than I was. I hope this information can help someone connect the dots in your own journey. Best wishes, Lyn

Jangle, I take singulair, a common asthma medication, which helps with my SOB due to chest congestion, tightness, due to MCAS. Lyn

For anyone who has caught a blood glucose below 60, I suggest that you request that you have a hypoglycemic panel drawn during symptoms (insulin, proinsulin and c-peptide ). If any of you have hypoglycemia (even reactive hypoglycemia) simultaneously with elevated insulin (or any fraction), then you need to be evaluated for insulinoma. It is possible to have this panel drawn after eating, so fasting is not always indicated. I spent last summer chasing down my reactive hypoglycemia. My OH will trigger plummeting blood sugars. And my OH is triggered by anaphylaxis. Protein taken in everytime you eat will help stabilize blood sugars. Lyn

My temp varied between 94.9 degrees and 96 degrees several years ago but today it was 99.6, without any discomfort or sweating. I have sudomotor autonomic neuropathy and Hashimoto's thyroidistis and assumed my crazy temperature swing was due to those disorders, but similar to Ana, the swings lessened after starting MCAS meds. Once your body temperature drops below 97 degrees, production of certain enzymes stops, which shifts metabolism. I was bedridden at the same time I couldn't get my temp above 95 degrees.

Hello Ophelialit, I am undergoing my second round of tests at MUSC to nail down my MCAS diagnosis according to the proposed WHO criteria. Several of my physicians,including Dr Afrin believe I have MCAS. One of the first "out of whack" laboratory confirmations I got was a TPO of around 1000. If I recall, the normal range is <50. I also tested quite positive for thyroglobulin, but can't recall the values. I was diagnosed as having Hashimotos and I was put on Armour Thyroid (natural desiated T3/T4 mix) and within days experience my first serious reaction --full blown anaphylaxis complete with an ambulance ride to the ED. Later on, I also reacted to Synthroid in multiple doseages. Until recently, we suspected the corn in the Synthroid was my issue, but now, I wonder if it isn't the dyes. I do tolerate Levoxyl in the 50 ug doseage, without FD&C artifical dyes, but react to the 75 ug tablets, which contain the artificial dyes. The dyes are known mast cell degranulators. I've seen four endos, one who trained at NIH, one another who trained at Mayo, and another currently at my state's medical college. None of them know ANYTHING about mast cell disorders. With all of the inflammatory mediators that are released during degranulation, autoimmune disorders are to be expected and one of the easiest to catch in semiroutine labwork is Hashi's. My allergist at the time, was the first to diagnose Hashi's in me. What elevated markers do you have? Where were the labs done/performed? Congratulations on getting this far. Best wishes on finding a regimen that works for you. Lyn

Sounds promising, especially due to antiplatelet-activating factor (PAF) properties, Any idea when it could be available in the US?

Congratulations!!! Unfortunately, you ended up at the hospital, but hey, it got the judges attention. Best wishes, Lyn

Welcome Zap, You've come ot the right place. While the majority of people on here seem to have POTS, you'll also find a bunch with other forms of dysautonomia. I have sudomotor and cardiovascular autonomic neuropathy, involving postganglionic parasympathetic and sympathetic systems. I have also had issues with migraines for dozens of years - complicated and hemiplegic migraine with and without aura. I've had to make dozens of accomodations to regain some functionality. Orthostatic hypotension keeps me in bed some days and since my body doesn't sweat properly, I'm kept in side when it is really humid and hot out. After all other causes have been rule out, I've been pursuing mast cell disorders and am forunate to see one top US mast cell specialists, who believes I have MCAS. There is a ton of great mast cell info on here to get you started, but there are other resources as well when you are ready to dig in. I agree, sounds like you really need a repeat TTT, where the equipment is not faulty. Does the report state inconclusive due to faulty equipment? If not, get the reading doc to add that to the report (your referring doc may have to put a little heat on the reading doc). They should repeat the study at no charge. The tech working with you shoule have also filled out an incident report and had the clinical engineering department evaluate the equipment. It should not be used again until it is fixed or replaced. Wonder if others are in the same boat? May I ask if you are seeing an autonomic neurologist? If not, let us know where you are located and we may be able to help you find a specialist. The migraine specialist may or may not have expertise in autonomic nervious system. Best wishes. Keep posting questions and we'll help how we can. Lyn

Rich, From this website, it says that technetium is injected during this hemodynamic blood flow test. As the tracer in the blood moves through the circulation, they should be able to see the lungs light up as well as see the heart light up on the scan, moving through the entire circulation. If the IV is placed in the juggular, and the tracer is injected as a bolus, it will be able to capture the first pass of blood through the left ventricle before going through the lungs and back to the right venticle before the bolus breaks up. I would almost bet the Dr Fuoad uses a computer program to quantify function by drawing region of interest over the areas she is capturing. Similar to how an ejection fraction (EF) is calculated in a nuclear MUGA study, which evaluates cardiac wall motion in addition to EF. By compaing regions of interest and standardizing pixel size, assumptions can be made to assess blood flow quantitatively. Old school nuclear medicine techniques applied in a new way. So cool! The exercise stress test is basically a standard treatmill study where prestress/resting imaging and post stress imaging is compared to quantify LV function and evaluate for blockages. I see you've had a pulmonary exercise test. Did you wear a full headgear during your entire stress test? If not, you may be interested in a VO2 (volume of oxygen) study, where pulmonary function is evaluated during a stress test, with our without a stress echo, and with or without the nuclear imaging I mentioned above. Prospective and post heart and lung transpant patients commonly have this procedure.

I think this may be what you are looking for , Rich. The Cleveland Clinic procedure, developed by Dr Fouad is done in conjunction with several other tests, ie TTT, Blood volume, etc to evaluate syncope. http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=637 Testing description: http://my.clevelandclinic.org/heart/services/tests/nuclear/hemodynamictest.aspx My above post describes common testing capabilites of any nuclear medicine department.

Charmed, Maiysa has been reading several books by Diana Driscoll. You could send her a message. I recall she got it really cheap for her e reader. The price is ridiculous!! Lyn

After 90 minutes of laying there without falling asleep, the tech came in and said I'd have to come back for another test when the doc could order a sleeping pill. i then asked if I could check my bag, and I found a single Ambien, which I took and was able to get a valid study on that same study. If you have a prescribed sleeping pill, bring a pill or two in case you can't fall asleep and they want to reshedule your test. You need to be asleep for a minimum number of hours for the test to be valid. Best wishes, Lyn

Emma, I am so sorry you had to wait 4 months for this appointment, and all you got was a huge disappointment! Funny how a sleep specialist would be so cavalier. Sleep is a basic need and many healthy people with sleep apnea have had life altering experiences due to apnea alone. No one really understands all that dysautonomia can do to a body, especially when you add the potential of sleep apnea in the mix. I myself have central and obstructive sleep apnea, and with my autonomic neuropathy have stopped breathing numerous while in deep sleep. My HR has also dropped to 27 on a cardiac event monitor while sleeping, just before I awoke choking and gasping for air. It wasn't until I finally had some postive tests, (ones that are so shocking, no one believed how severe my episodes actually are) that I got some medical "respect". Now, we know I go into an atypical form of anaphylaxis on a regular basis and that misbehaving mast cells are responsible for many of my seemingly unrelated conditions. I guess what I am trying to say, is how can she possibly know how severe your POTS is, especially without testing to see if you have have obstructive or central apnea or some other sleep disorder making your POTS even more unstable? She is assuming you have a less severe form of POTS, which is likely all that she is familiar with. You can choose to try to educate her or drop her once she can no longer help you. Best wishes, Lyn

Sounds like a nuclear medicine study, possibly with technetium, which has a radioactive half life of 6 hours and will be completely gone from a body within about 2 1/2 days. Technetium (TC99m) is the most common radioisotope used because of its great versatility and convenience and can be tagged to numerous tracers, which will direct it to specific parts of the body and show up on nuclear imaging. Any organ system can be imaged this way, as this a basic, general technique of nuclear imaging. A specific radioactive tracer is selected depending upon the effects wanted. Short frame images (1 per sec, etc) are taken while the injection is given documenting document blood flow. Longer images (30 or 60 sec) can be taken serially to capture blood pooling of the organ and then depending on the radioactive tracer used, delayed images may capture even more information. These delayed images could be taken using planar (spot) imaging or SPECT technology, giving 3 D images. SPECT images could also be captured simulateously with CT imaging using a SPECT/CT scanner.

My headache from a CFS leak was definitely different than my current histamine headache, but both of them will subside when laying down and not moving. I have also had a CSF headache after a CT myelogram which was performed in 1984, when the contrast was removed leaving a CFS deficit and caused a horrible nightmare headache for days. My most recent CFS leak came on slowly and was treated 2 weeks aften an epidural, after I complained about this horrible headache when upright. I was given a blood patch. Basically they took out blood from my arm then reinjected into the space where my epidural was. It was the oddest procedure I have ever had, because I could feel the blood go through my spinal column then I felt the worst pressure I have ever felt before my ears popped and then "spoof" my headache was gone. The blood fills in the space that was missing the CSF. I came into the department slumpted in a wheelchair and couldn't even tolerate lights, then walked out a few hours later. Why don't you see if the headache subsides with a benedryl and then if that doesn't work, you could try one asprin, as long as you aren't senstitive to asprin. Benedryl blocks histamine receptors and asprin blocks prostaglandins, which either could be the culprit in a histamine headache. If that doesn't work, then you could go back to considering a CFS leak. Lyn

I had a CFS leak from a epidural in the month that proceeded my dysautonomia diagnosis. I was given CT/x ray contrast and was scanned under fluoroscopy in the interventional radiology suite. Which I don't recommend due to the potential contrast issues, especially since you are pursuing mast cell related issues. Your neuro is likely not familiar with MRI gado can also trigger mast cell issues in mast cell sensitive patients, as there is little published, but it is anecdotal among a bunch of us patients. There is a old school procedure in the nuclear medicine world where a radioisotope is injected and the CSF leak can be localized with a lumbar puncture. This does't avoid the spinal tap, but does avoid the x ray or MRI contrast. Just something for your neuro and nuc med doc to consider. Best wishes, Lyn

hippy, I also was bedridden for 6 months then housebound for several additional months. By the time I was diagnosed with signficant orthostatic hypotension and autonomic neuropathy, a miniscule amount of a betablocker sent me spiralling even lower and causing a resting HR in the low 40s for about six weeks. I would sleep 18-22 hours a day in the beginning. I have worked my way back to about 40 percent of what I was able to do before. Although I am unable to work, I am able to leave my house several times a week, go shopping and meet up with friends. I still sleep 10-13 hours a night. Healthy foods, walking, and sleep have made a big difference in my life. And now antihistamines, singulair, aspirin and limiting my mast cell triggers have helped me get to the next level. Good luck in getting to your next level! Lyn