DoozlyGirl

I haven't been diagnosed with POTS, but with autonomic neuropathy. I've been communicating with 6 others chasing down mast cell issues who also have autonomic neuropathy. Several not on DINET, but on other forums. We tend to see a neurologist, not a cardiologist. I've been reading that histamine and its degranulation products are very hard to test for, because they are not very stable, and the current testing methods are not sensitive enough. Because of this, Dr Afrin orders that all vials and samples are kept on ice right through to testing. Many labs haven't done that. Dr Akin states these labs have to be drawn within a few hours of an mast cell degranulation episode. I read of patients having labs drawn hours after their episode. There are lots of reasons why the POTS docs and others may not have been able to find these degranulation mediators.

Nasalcrom works on my sneezing within minutes and clears my tames sinuses within 15-20 minutes. I then follow up with a nasal irrigation rinse and or eucalyptus or peppermint essential oil drops in steam. The eyedrops work within minutes, too! Lyn

Issie, Have you considered OTC nasalcrom and or ketotifen eyedrops to help with seasonal allergies/environmental allergy symptoms? Both work great for me. Here's to better days, Lyn

darlene, I have an appointment with Dr Afrin mid May and have chosen to see him to firm up my MCAS diagnosis (2 docs already diagnosed me based off my symptoms and skin biopsy showing plasma cells, but haven't yet found lab proof of the mediators that mast cells release during anaphylaxis), get this disorder in my records and officially have him lay out my best treatment options. I have been able to sort out many of my annoying symptoms with anithistamines and a low histamine/salicylate diet, but still get the anaphylaxis. In the past, Dr Afrin has been kind enough to direct local and ED staff in emergent and troubling situations, but it is obvious that as he helps more patients, word of mouth of his care and skill at diagnosing mast cell disorders is spreading like wildfire, and he is booking up fast. Same thing apparently happended in Boston at Brigham and Womens Hospital, prompting a long backlog and a evolving process to get in. Since mast cell disorders often provoke anaphylaxis (severe plummeting of BP or angioedema/broncho/respiratory type and other forms) and a host of symptoms in between which can be triggered to escalate and can manifest as life threatening, it is imperative that a local physician manage the epi pens/steroids/antihistamine/gastrocrom, etc. Dr Afrin will order tests and diagnose a mast cell disorder, recommend a treatment plan based off your specific testing and symptoms, and direct those that request help in sorting out specific issues when back home, but he doesn't order meds and relies on a local doc to follow his recommendations and monitor the treatment. He is very willing to help any local doc better understand mast cell disorders and is asking you to find a local physician partner to manage your day to day care. He is an hematolgist/oncolgist and is quite familiar with guiding cancer treatments from afar. Keep us posted. Good health to you, Lyn

Hi all, I am on the MCAS journey and trying to figure out why food can make me feel worse. Over the years I typically felt better after I made a change in my diet (eliminated soda, eliminated fast food, eliminated milk for 6 months then reintroduced milk. Had issues again several years later, so switched to almond milk. Eliminated packaged foods, Increased protein, gluten free made me feel worse, then found that low gluten works best for me, increased fruits and veggies , etc. Now I am finding that some of these healthy foods seem to be linked to my symtoms. I am sorting out histamine, but it only explains part of my issues. I am finding that salycilates may be another piece of that puzzle, at least for me. The discussions on histamine on here as well as a few other forums I am on, keeps pointing me to broken detoxificaiton pathways, ie body can't break down the metabolites. Sometimes when my bucket isn't too full, I can get away with eating XYZ, but at other times, in stress, weather changes, my period, I can't get away with anything. My numerous medication/food preservative/FD&C dye intolerances/triggers contain sulfa or are a direct mast cell degranulator. I've been reading up on sulfa detox pathways, but there are some missing chunks for me in the science. I have had sucess with herbal based detoxification programs in the past, but issues when I tried to reintroduce milk thistle to assist my liver in detoxing. Has anyone looked into detoxification issues and how they are related to our symtoms? Any thoughts are appreciated. Would love to hear your experiences. Thanks, Lyn

Very interesting! So I've got obvious signs of MCA, ie. flushing, anaphylaxis, and vascular permeability (with plasma and other blood cells cells in my skin biopsy) and get really high BP and plummeting BP. But my HR doesn't go up more than 20 points or so max. Watching this video makes me wonder again why my HR doesn't rise to compensate for the BP. Any one else? Any thoughts??? Thanks for sharing, Lyn

Sue, I am really interested to hear what the Mayo docs say about your testing. Proinsulin and c-peptide are cleaved from insulin. Any idea what your insulin was at the same time your glucose was at it's lowerst? If one of the insulins )proinsulin, c-peptide or insulin) was elevated during a glucose of 50, you'd have your test for insulinoma. Best Wishes, Lyn

Hi all, I have a few more tips I learned over the years drawing blood on really sick patients. Hydration is really important to plump up blood vessels. Ask to have blood drawn in chair that reclines or lay on cart, which will help avoid vasal vagal responses (syncope) and pooling issues. Putting patient in trendelenburg (feet higher than head while laying down) is another option to get blood to upper extremities. A warm compress (or wet towel in microwave for 30 seconds) will help make the veins visable. A blood pressure cuff can be used as a tournequet and pumped up to the pulse pressure (number between top and bottom number of BP) can help overcome BP issues during blood draw. A butterfly needle is easier to manaipulate to find veins, but beware because too small a needle will damage red blood cells. Draw blood into a syringe first, the veins won't "blow" due to the pressure in the vacutainer (blood tube), then transfer blood into blood tube. Lyn

I bet your reaction is related to the artificial sweetner. Researchers and Neurologists have been seeing patients with reactions to artificial sweetners, especially aspartame for decades. You'll be surprised what you find if you Google aspartame.

paona, I truely appreciate your post. It is packed with so much valuable information for me. especially that peppermint and spearmint are not on your masterlist. This is a relief. Also been wondering about my beloved tea. I always knoew I didn't do well with wintergreen, but never knew why. Now I know. And can't wait to start with frozen pinapple! I really appreciate this information. Thanks, Lyn

lemons, I wonder how many Potsies feel better off gatorade? Thanks for the comment, Lyn

targs and song, I'm glad you find my experience helpful to you. It took me years to pin it down, mostly because I hadn't heard of a food dye causing anapylaxis/plummeting BP before. Years ago when I had my first anaphylactic event (complete with ambulance ride and epi), my allergist disected the individual ingredients I had in the previous 24 hours and deduced MSG was my trigger. At the time, I couldn't find any online information the supported MSG as a possible trigger for anaphylaxis. I could only find a connection with migraine and other lesser symptoms. Marti, thanks so much for the information on farmers spraying Yellow #5 on crops in Texas as well as your experience with the Feingold books. I've perused the website, but need to dive into all the pages. It's on my to do list. I agree, songcanary, we are all impacted by the crap in our food supply. Thanks everyone for the discussion, Lyn

Dizzy , Please let me clarify regarding the azo I mentioned; they are the chemical classification of the FD&C dyes. The Mast cell world refers to them as azo dyes, so I used that term so others could see that connection to the mast cell documents and websites. I do take probiotics and do better with them than without them. I have used different brands and read to switch them up to get full coverage. Thanks for your post, Lyn

Congratulations Christy, Glad to hear your appointment went well and that you like Dr Afrin. I see Dr Afrin next month. How long did you schedule for your appointment and testing? Do you have any tips or advice as I prepare for my appointment? Please keep us posted. Lyn

Just last week, I ran into posts from the EDS patient website and it is pretty common fro EDS patients to have issues with anesthesia and numbing medications. Some of them require massive doses of these meds to knock them out or numb them. Lyn

Monstrosity, I haven't yet gone chased down EDS, but there are 6 or 7 different types of EDS. Hypermobility is a classic sign of only the first type. Vascular is a different type. I have a strong family history of vascular issues (family history of multiple types of aneurysms and sudden cardiac deaths) as well as a personal history of brain surgery for a rare vascular tumor), and know tht once I get on my way with the MCAD diagnosis, I plan to follow up with EDS. Which MCAS test did your Allergist run? Most start with tryptase, but this test rules out mastocytosis (too many mast cells). Folks with overly sensitive mast cells (MCAS) have a tryptase in the "normal" range, so don't fret if it is normal. The work up includes numerous tests to look for elevated mediators, such as prostaglandins, N-Methylhistamine, and heparin. In case you haven't heard, the experts have now began calling it MCAS - syndrome, verses D=disorder. Best wishes on your search for the root cause or your issues, Lyn

Julie, have you also read that aspirin often helps selective MCAS patients?

Rama, What makes you curious about them? Lyn

paona, Thank you so much for sharing your experiences with your daughter's intolerances. What a tough thing for a little one to have to go through. I am very interested in this information and have been reading about the Feingold diet. I am so glad to read she can tolerate some of these foods again and is dong well. I really appreciate the list of foods that you posted, as it is more inclusive than lists I have found online. What is the GAPS elimination diet? Have you found a tea that is low in salicylates? Can she tolerate peppermint or spearmint? Thanks again, this information is helping me sort out my triggers. Lyn

Hello all, I thought I would share that I have figured out one of the things that is triggering my plummeting BP episodes. I have unstable BP, which at any given point can be stroke level high, then plummet. Several days a week, I catch a 200/100 BP then during my worst symtoms have caught a 60/40 as my low. I have been able to link FD&C Yellow Dye #5 to my hypotensive episodes. I know some of you are wondering how in the heck could I figure this out? Years ago, my allergist at the time figured out I couldn't tolerate a yellow pill, and he ordered a different doseage where I split white pills. I would have nausea, flushing, blotching (not itching hives) or lower extremity itching within minutes of taking various meds, but I would just chalk it up to another pill I can't take. One day the pharmacy switched generic suppliers and I ended up with symptoms again. My "aha" moment came when I read the peach colored pill had Yellow 5 in it. I was switched back to the white one, where I had no symptoms. My daily symptoms have significantly decreased since I eliminated/switched meds that do not contain Yellow 5 and 6 dyes. Before I could figure out if I was ingesting these dyes in my food, I had a significant reaction. I didn't connect azo dyes to my hypotensive episodes until I went into anaphylaxis within 10 minutes of eating my birthday cake (yellow cake and whipped topping), which I later found out from the bakery had Yellow 5 and 6 and Red 40 dye. Several days later, I put a drop of yellow food coloring on my tongue and replicated the post-cake hypotensive episode, complete with flushing, blotching, "D', and vomiting. My hypotensive episodes are part of a series of symptoms, such as flushing, GI issues, cognition issues, blurry vision, blotching, vascular leaking, lower extremity swelling which I now know is anaphylaxis. I have been diagnosed with MCAS, and these pieces are falling into place. Azo dyes (any FD&C dye) are KNOWN mast cell degranulators and thus can trigger mast cell reactions (dumping of up to 200-300 chemical mediators into the body). Yellow 5 is AKA tartrazine and and Yellow 6 is AKA sunset yellow dye and is used in yellow, red, orange, peach, and purple pills. Red 40, AKA Allure Red is another trigger for people that has been reported to FDA. These are the same dyes found in foods, such as gatorade, kool-aid, jello, powdered cheese covered snacks, soda, and nearly every packaged food product you pick off the grocery shelf. Numerous countries in Europe have banned these dyes due to the health risks. Yellow dye sensitivity is linked to chronic hives, asthma, asprin sensitivity, and salicylate sensitivity. Until I did some research into these dyes, I never realized the impact they can have on the body. I hope this information may help someone sort out their own symptoms. Lyn

My low BP (OH) episodes are triggered by Yellow and Red food dyes. I am sharing this list from the mast cell forum. Note that FD&C Yellow 5 and 6 and Red 40 dyes are very high in salicylates. There are a variety of different products containing salicylate and it is sometimes difficult to determine if a product is salicylate free or not. Hopefully this page will help. Products that often contain Salicylates: •Acne products •Air fresheners •Alka Seltzer •Breath savers •Bubble baths •Cleaning products •Cosmetics •Detergents •Essential oils •Fabric conditioners •Fragrances and perfumes •Gums •Hair sprays, gels and mouses •Herbal remedies •Lipsticks and Lip glosses •Lotions •Lozenges •Medications •Mouthwash •Muscle pain creams •Pain relievers •Pepto-Bismol •Razors with aloe strips adjacent to the cutting edge •Shampoos and Conditioners •Shaving cream •Skin cleansers or exfoliants •Soaps •Sunscreens and tanning lotions •Supplements derived from rose hips or bioflavoniods •Toothpaste •Topical creams •Wart or callus removers Terms/Ingredients to Avoid: •Acetylsalicylic acid •Aloe Vera •Any coal tar derived dye •Artificial flavorings •Artificial food colorings •Aspirin •Azo dyes •Benzoates (preservatives) •Benzyl salicylate •Beta-hydroxy acid •BHA •BHT •Choline salicylate •Disalcid •Ethyl salicylate •Eucalyptus Oils •Isoamyl salicylate •Magnesium salicylate •Menthol •Methyl Salicylate •Mint •Nitrates/Nitrites •Octylsalicylate •Oil of Wintergreen •Peppermint •Phenylethyl salicylate •Red Dye (#40) •Salicylaldehyde •Salicylamide •Salicylate •Salicylic acid •Salsalate •Sodium Salicylate •Spearmint •Yellow Dyes (#5 & #6) Brand Names of Common Drugs containing Salicylate This is not a complete list of all drugs containing salicylate, but it is a start and hopefully will aid and help you in avoiding drugs/medications that contain salicylate. If you are taking a medication and you are not sure if it contains salicylate or not check with your pharmacist or doctor. Never start the elimination diet with out checking all medications and first and consulting a professional. Never start taking a medication with salicylate in it directly after the elimination diet and shock can occur from introducing too much salicylate into your body after it has gone a long while without salicylate. This list was put together by the Mayo Clinic. •Acuprin 81 •Amigesic •Anacin Caplets and Tablets •Aspirin Regimen Bayer Adult Low Dose •Aspirin Regimen Bayer Regular Strength Caplets •Bayer Children’s Aspirin •Bufferin Caplets and Tablets •Disalcid •Extra Strength Bayer Asprin Caplets and Tablets •Mobidin •Mono-Gesic •Norwich Aspirin •P-A-C Revised Formula •Regular Strength Ascriptin •Salflex •Salsitab •Sloprin •St. Joseph Adult Chewable Aspirin •Tricosal •Trilisate •ZORprin

Potluck, I am sorry to hear you had such a disappointing experience with this specialist. Don't get discouraged. Each imaging procedure has limitations. It is not uncommon for tiny lesions to be found on the a scan but not correlated on a CT. Did the same Radiologist read both scans at the same time? Maybe the specialist could ask for a review by the Radiologist CT specilaist in the department? I wonder if the CT scan was aquired following the adrenal technique mode, then processed in thin slices. Since the adrenals are so small, they can often be missed if the slices taken are too large. Or if the lesion found on the MIBG study is located outside of the adrenal. MIGB studies are great at finding hotspots, but don't do a good job determining the exact depth of the lesion in the body. Maybe a MRI would find the lesion that was found on the MIBG? Good Luck in tracking down these your reason for such elevated NE. Lyn http://www.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/Endocrine%20tumors/adrenal/pheochromocytoma.html CT Scan A CT scan is obtained to localize the tumor in the adrenal gland. Modern CT technology provides the diagnosis in more than 90% of patients with a pheochromocytoma in the adrenal gland. In about 10% of patients the tumor may occur outside the adrenal gland. These tumors are often much smaller and difficult to find on a CT scan and other studies such as an MIBG scan may be indicated. MRI Scan MRI scans provide similar information to the CT scan. Adrenal tumors have a very rich blood supply and a pheochromocytoma light up very brightly on MRI scans providing the diagnosis. MIBG Scan Additional studies that are available for localizing a pheochromocytoma include the MIBG scan and octreotide scan. MIBG scans is used to detect adrenal pheochromocytoma. This test does not detect any other type of adrenal tumor. This is a radioisotope study in which a substance that is required by the adrenal gland to manufacture adrenaline is labeled with a radioactive isotope. Tumor tissue, which makes large amounts of catecholamines, will selectively take up the radioactive labeled substance. This is then identified as hot spot under a machine that detects the radioisotope. Octreotide scan Octreotide scans are useful in many neuroendocrine tumors. Many neuroendocrine tumors have receptors (tiny molecular holes) into which a hormone called somatostatin enters. In octreotide scan an antibody to this receptor is labeled with a radioisotope. Tumors that are rich with these receptors will have many of the antibodies bind to them. Many neuroendocrine tumors have much higher concentration of the somatostatin receptors compared to normal tissue. Injection of the antibody to the somatostatin receptor that is coupled with a radioisotope will selectively go to neuroendocrine tumors. Imaging the patient under a machine that recognizes the radioisotope produces a hot spot where the tumor is located. This is an important for study for localizing neuroendocrine tumors that are not visible on studies such as the CT scan and MRI scan.

From what I've read, it is NOT ok to sleep in compression hose. The body loses that effect when wearing them laying down. Best to wear compresison hose only during day when up and around. I know I red this when I was first diagnosed. Believe it came out of Vandy or Mayo.

ME TOO!!!!!!

Check out histamine intolerance.