sweetfeather

I probably have HyperPots since the mast cell protocol has helped me a lot. But I'm not typical since I mostly have low blood pressures. Before trying the mast cell protocol, I had recurrent episodes of feeling very faint, nauseous, with a sense of doom and with average blood pressures (which were high BP's for me) and instead of my face flushing I'd have a heat wave feeling go up my back and crest over my shoulder but my face and extremities were very pale and clammy. I thought these were just POTS episodes but it looks now like they were mast cell degranulation/anaphalactoid reactions. I didn't fit the more typical face flushing and high BP symptoms of most with hyperPots. My teenage son also has POTS and we have some type of EDS either mild Classic or hypemobile. I got really sick on betablockers and midodrine with episodes of anxiety and high 24 hour urine catechomines and an extremely high plasma metanephrine test (over 10 times normal) which caused a Pheo scare. I had scan after scan and no Pheo was to be found. I had a constant headache on florinef which sounds like Dr. Diana's (prettyilldotcom) diamox recommendation may help me. I'm allergic to sulfa so I'm going to discuss a cautious trial with my rheumi at my next appointment. I take nasalcrom, gastrocrom (especially when intestinal symptoms flare), zyrtec and/or claritin in am, zantac, and itchy eye drops by Kroger which is over the counter ketotifen. I've just started Atarax after I heard Dr. Theoharides recommends it over Zyrtec for mast cells in the brain because it crosses the blood brain barrier. What a difference! I feel like it has given me IQ points back. I think so much more clearly except a full pill makes me so sleepy. I'm taking it at night and only part of a pill during the day.I'm hoping I can build the daytime dose up slowly and the sleepiness effect will lessen in time. I weaned off wellbutrin and ADD meds before trying the Atarax and so far it looks like the Atarax is working BETTER for my attention and word finding issues. I won't know until fall if I'll need the Wellbutrin for SAD. For now... the sun is out, and I'm Happy. Best of luck to you all working with your doctors to find what works best for you!

Jen, that is so scary! I'm sorry this is happening to you. I agree with Dizzy about going to the ER and getting it thoroughly checked out asap! Do you see a neurologist for your POTS? Have you had an MRI recently? Have you had a lying/standing plasma catecholamine test? Tremors can be a symptom of hyperPOTS. I had some right leg tremors during episodes which likely were mast cell degranulation episodes but I didn't have them as often or as severe as you. I hope your docs figure out what is going on quickly for you! Some info which might interest you: http://www.medscape.com/viewarticle/522421_3 http://hyper.ahajournals.org/content/45/3/385.full http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/ Also read Dr. Diana's info on external communicating hydrocephalus and CCSVI especially if you have hypermobility: http://prettyill.com/videos/watch/external_communicating_hydrocephalus Dr. Theoharides is a mast cell expert whose work you might find of interest too: http://prettyill.com/downloads/stressmastcells.pdf He likes hydroxyzine for mast cells in the brain because it crosses the blood/brain barrier. But I read on an IC site he mentioned to use caution with it in people with tremors because it may worsen those( in high doses). Some with mast cell activation find cromolyn sodium is a big help but Dr. Theo likes Quercetin. (He is an owner in the supplement business he helped develop and has patents) I think the trial and error in finding POTS treatments is one of the hardest things about it... that and the waxing and waning symptoms making it doubly hard to even know what is helping and what isn't sometimes! I pray you find answers and relief from your symptoms quickly. My best, SF I hope you get feeling better soon.

I went to the ER very sick and feeling like I was going to die. It was my second ER visit in two days. My son told me, "Mom, he thinks you're crazy." The doc wanted to send me home with compression socks. I stood arguing with him that I was too sick to drive two hours one way home. As I stood arguing with him he watched my feet turn bright purple and when he noticed how high my heart rate had skyrocketed he told me to lie down. When I did he saw my right leg tremors! He rushed off to consult with a cardiologist and came back and said he was admitting me. A tilt-table confirmed... POTS. But on my release papers he wrote if further cardiac testing failed to find anything he recommended a full psychiatric examination for somatization disorder. Somatizing???? This after he saw with his OWN EYES my purple feet, high heart rate standing, and right leg tremors AND he read the tilt-table which confirmed POTS!!!! Somatizing?

I have cold feet most of the time and when I have a POTS episode my lower calves and ankles are very cold also. I just got some Geisswein Bruck Lodge (Austrian wool) boots that are wool, washable, have a very comfortable removable insole (almost as comfy as Danskos) and rubber soles for traction. They are probably itdhy without socks but I wear them with socks and with my pants legs tucked in. I got mine on sale at 6pmdotcom which was cheaper than Zappos. They are gray with a drawstring at the top and tassels. I LOVE them.

I thought I'd share with all of you that my 13 year old son was diagnosed in December with POTS. I don't think he'd have been diagnosed so young, if at all, if I hadn't been diagnosed with POTS two years ago. You see, I had been diagnosed about five or six years ago with inattentive ADHD. I saw similar inattentive symptoms in my son and his teachers alerted me his inattention was impacting his grades. His doctor diagnosed him with ADHD-inattentive when he was ten after his teachers and I completed a survey of his behavior and he did a blind trial of ritalin with two weeks of ritalin and two with a placebo in unmarked bottles. The teachers said his attention improved dramatically on what proved to be the ritalin. Well, after I was diagnosed with POTS and I realized a lot of my inattentive symptoms were actually from POTS, I wondered if perhaps the same was true for my son. One of my biggest clues was how he looked singing on stage during choir concerts. He only had two concerts a year but it seemed like at every concert he looked really pale and he'd shift around and shake his legs. During the first concert after I was diagnosed with POTS, I paid extra close attention to him. I saw his face getting pale... and I noticed how he kept shifting his weight and jiggling his feet just like I remembered... I examined the expressions which flashed on his face and it became so obvious to me... why hadn't I noticed it? He flashed an expression which looked like he was feeling faint and then he'd jiggle and smile and then it would repeat all while he continued singing. How could I have missed this clue? Well... it was because I didn't know anything about POTS but once I did it was like a spotlight was turned on and a vague observation and a fleeting expression suddenly became magnified and crystal clear. Are there any clues you realize you missed that in hindsight you might have noticed had you known about POTS? Here's a missed clue from me: "I think I have inattentive ADD, Dr... for one thing... when I go to the grocery store I'll find myself wandering around looking at stuff...I go into a daze and lose track of time and sometimes I can't even remember what all I've been looking at. I often forget to buy the very things I went there for! Then when I leave the store, I never can remember where I parked my car. I'll wander around in the parking lot looking for it and trying to think where in the world could I have left it? And then when I find it,,, I always feel so flustered I have to sit in my car for awhile before I feel able to drive home."

Ashelton80, I'm so sorry to hear you are miserable and I hope your doctors figure out what is going on with you soon! Warning: long, way too long... I'll tell you my story...I've had many chemical sensitivities, medicine allergies, allergy-like symptoms, food intolerances, digestive and intestinal problems, rashes, bruising, and many illnesses all my life. My symptoms "wax and wane and are never the same" I've tried to get answers from IGG and IGE food allergy testing, a celiac test, elimination diets, keeping a food diary... I could never get answers why I was so sick and tired all the time. I had episodes of lower abdominal pain that hurt so bad i was convinced they were ovarian cysts rupturing but my docs thought it was "colitis' type pain. They decided it was IBS. I've had episodes of bloating that make me look 6 months pregnant. I often have nasal congestion, sinusitis, bronchitis, pneumonia, brain fog, inattention, bad memory, fatigue, rashes, bruises, hypotension, low temperature, and on it goes. As I've gotten older my illnesses get harder to treat. If I need antibiotics I have to have the highest dosage for twice as long as most people need. I'm allergic to many of the classes of antibiotics. My latest allergy was to doxycycline and it was my first anaphalactic type reaction with swollen tongue and lips. I've had periods of time where I seem to gain weight just looking at food and a couple of times where the weight just melted off for what seemed like no reason. I feel like I'm sick all the time and my kids aren't much better. We spend so much time at the clinic they joked they should name a wing after us when they built a new clinic. I tried almost every diet out there to either lose weight or "get healthy." Good health eluded me. I just kept getting sicker and my digestion was now so bad I couldn't digest raw fruits or vegetables... not even salad! I was desperate when I heard about the SCD diet (Specific Carbohydrate Diet.) The science behind it made a lot of sense to me. The idea is to starve out bad bacteria which thrive on food you can no longer digest because of a damaged gut and replace them with good bacteria. I figured I'd most likely killed most of the good bugs because I'd been on so many antibiotics throughout my life and my malabsorption indicated I probably had a pretty good population of bad bacteria. The SCD requires fanatical adherence. It is free of polysaccharides and disaccharides and low in lactose. No soy, no sugar, no gluten, no potato, no milk, no butter, no rice, no grains... I read the reviews of the book (Breaking the Vicious Cycle) on Amazon and while I was a little skeptical, I was desperate so I decided to try it for one month. The first four days were hard but after that... most of the brain fog lifted, my bloating was gone, I didn't have any lower left abdominal pain, and my crazy carb cravings disappeared... like many of the reviewers.. it felt like a miracle to me. I enjoyed seven months free of clinic visits. I couldn't remember not being sick with something for that long in my whole life! But never one to leave good enough alone, I tweaked the diet to be more like the GAPS diet. I thought if SCD was good... GAPS would be even better. Wrong... at least for me. Not long after I started eating the foods recommended in GAPS... a lot of long simmering bone broth soups and fermented veggies...What was this? I had a bloating episode! I was sure somehow I'd been gluttened! Soon after that... my nasal congestion and sinus problems returned. You'd think I would have figured out I needed to drop the long simmering meats, sauerkraut, and Bubbies probiotic pickles. Nope! I figured I must have developed a new allergy or intolerance to something! When I got bronchitis a little later, I thought it was because, well, what could I expect?... my kids were back in school! I continued on GAPS unknowingly eating lots of high histamine foods and my health continued to deteriorate. In November, I got the Swine Flu. I had twelve days of fever. Then it turned into a pneumonia that literally lasted 2 months and required four rounds of Zpacks, a round of doxycycline then Levaquin.. the big gun antibiotic. Surprise, surprise... my old friend candida was back followed by a return of intestinal symptoms. ALL that sacrificing of foods to starve out bad bugs... all those batches of 24 hour yogurt!!! For what??? I was devastated and I threw in the towel and started eating rice and potatoes. I purposely ate gluten a couple of times and I paid and paid for that with PAIN. My doctor said I must be celiac despite my previous negative test. Then... I started getting some brand new symptoms. First, the ends of my toes started getting red and itchy. A week later my toes started looking purple. I was eating rice and potatoes again and I was unexpectedly dropping weight. I was peeing all the time. I was getting dizzy when I drove long distances. Then one weekend, I started feeling really terrible. I walked up some stairs and tried to talk and I couldn't get my words out. I worried it was a stroke. I could smile just fine and I felt better after lying down. Then I started feeling funny... I checked my blood pressure and it was the highest I'd ever seen it... borderline hypertensive but i'm usually hypotensive. My feet and legs turned purple, My heart rate was really high even lying down. My hands and legs were cold and clammy. I was nauseous and dizzy. My mouth was dry. My eyes felt dry. My hands were shaking. I had a headache behind my eyes that felt like my brain was being pushed back. I had a slight tenderness in my lower left abdomen. I started to have mild chest pain and palpitations. It felt like my heart was skipping a beat once in a while. And when I laid down... I didn't feel any better. Especially after I saw and felt my abdomen pulsating. I'd seen that years before when I was working long hours standing sliming fish at a cannery. I remembered how at the time I had thought, "my heart has slipped!" And then later, after some sleep I laughed at myself and I convinced myself I must have dreamed it. But here it was happening again. I had my kids feel it. I remembered reading about Ehlers-Danlos and I had some vascular type facial features! I felt doomed. I went to the ER that night in an ambulance and after some IV fluids and a sonogram of my abdomen which didn't show anything unusual, they sent me home and told me to drink more. Within six hours I was feeling so bad again I drove to school and picked up my oldest son and told him he had to drive me to the bigger hospital an hour further away because I was pretty sure if I went back to the other ER they were going to kill me. I told him if I passed out before the hospital one hour away he better pull in but f we were past the first hospital even by a minute when I passed out to just keep driving to the other one. I had to argue with the ER doctor that an EKG and Echo which were ok did not mean I could go home two hours away with support stockings. As we argued the alarm went off on my monitor because of my heart rate and I said look at my feet and they were bright purple. He suddenly looked concerned and told me to lie down. When I did, I had a right leg tremor and seeing that he ran off to consult with a cardiologist. Three days later, many Iv's and a tilt test later... I went home with the diagnosis of POTS... the condition I told them I thought I had when I got there. So that's my story... I'm back on the SCD but as low histamine as I can make it. My bloating has gone away again and I haven't had major abdominal pain. It looks like I probably have mast cell activation and possibly HIT because of my positive response to H1/H2 anti-histamines, and the mast cell stabilizer Nasalcrom. I just started a trial of Gastrocrom. Luckily my rheumatologist really listens to me about my symptoms and he acts interested in hearing the latest research I've found. He told me he was glad I was doing so much research because he just doesn't have time to do it. He gave me a script for a methylhistamine test but said not to go off the meds to try to provoke an "episode." He said, "if it's not broke, don't try to break it." While we need to be advocates for ourselves, I think it is very important especially with a complex syndrome like POTS that we don't try to self-diagnose and self-medicate. I have to remind myself sometimes I'm not the doctor! My husband likes to say, "you're not a doctor but you think you could play one on tv." Some interesting tidbits: Leftover meats can be very high in histamine because the histamine keeps increasing in leftover meats even after being refrigerated right away. So the older the leftover meat, the more histamine it is likely to have. Did you know that? I had no idea and I'm fascinated by it. I wonder how much histamine is in jerky? Does the histamine stop increasing when the meat is dried? So many questions! It's important to freeze leftovers immediately because, if I'm remembering it right... freezing suspends histamine production but doesn't destroy the histamine. It sounds like people can experience kind of a "barrel effect" where they'll appear to tolerate a certain amount of histamine until their personal thresh-hold of histamine is exceeded, at which time their symptoms will become increasingly evident. If this is what is happening with me, it might explain some of my waxing and waning symptoms. This site has examples of low histamine foods and an interesting discussion about sugar: http://www.goldbaum.net/balance/Low_Histamine_Diet.html This site has a lot of info about histamine in foods and foods that might release histamine from mast cells: http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm#foodsource "From the Urticaria Chapter The foods most commonly reported to induce urticaria are shellfish, fish, egg, nuts, chocolate, berries, tomatoes, cheese, milk, and wheat. Foods reported to release histamine directly from mast cells are uncooked egg whites, shellfish, strawberries, tomatoes, fish, chocolate, pineapple and alcohol. Foods containing histamine—Aged protein containing foods and fermented foods commonly have increased histamine levels. Foods reported to be high in histamine are fermented cheeses (e.g. Camembert, Brie, Gruyere, Cheddar, Roquefort, Parmesan), brewer's yeast, shellfish, many fin fish, canned fish, tomato, spinach, red wine (especially Chianti), beer, unpasteurized milk (e.g., cow, goat or human milk), chicken, dry pork sausage, beef sausage, ham, chocolate, fermented soy products, and all fermented vegetables, such as sauerkraut."

I always lost a lot of hair about three months after my pregnancies which I've heard is quite common. I've read that postpartum hair loss might be from dropping Estrogen levels. But, I just learned, DAO drops drastically after pregnancy... I wonder if that might also be a factor in postpartum hair loss? And if DAO plays a part in postpartum hairloss, does it also play a role in other hair loss including alopecia? http://www.ajcn.org/content/85/5/1185.full "In pregnancy, DAO is produced at very high concentrations by the placenta (119, 120), and its concentration may become 500 times that when the woman is not pregnant (120). This increased DAO production in pregnant women may be the reason why, in women with food intolerance, remissions frequently occur during pregnancy (14)." It would be interesting to research if DAO inhibiting drugs list hair loss as a side effect. Also... I'd also like to learn more about WHY the placenta produces so much DAO! DAO levels up to 500 times higher in pregnancy??????!!!! What is so important about DAO that the placenta does that???? DAO, histamine, mast cells, intestinal damage, inhibited DAO production, metanephrines, EDS, hairloss ... Agh! Why does it all have to be so complicated?

Issie, please let me know if you find the kind of magnesium they recommend! I wish that article would have gone into more detail about Epsom Salts. If anyone finds more info on the type of magnesium in Epsom Salts, please share the link. If I'm feeling "toxic" an Epsom Salt bath makes me feel so much better.

Thanks so much for alerting me to this, Issie! I sometimes take a magnesium supplement called Natural Calm to help me sleep. I also read somewhere magnesium might help those with EDS. This product says it has "Ionic magnesium citrate" which they claim is a proprietary blend of citric acid and magnesium carbonate which is supposedly highly absorbable. Is this a type the article says may cause depression in some people? I don't tolerate milk and it makes me really sleepy and lethargic but I assumed it was the lactose because I can eat SCD 24 hour yogurt which has calcium but is low lactose. But I also get sluggish from too much cheese so I wonder if calcium might be a problem for me after all? Cheese is fairly high histamine so I try not to eat too much but I LOVE it. Sigh. I am on an antidepressant and ADHD meds though so I think I better investigate the calcium a bit more! Thanks! edited to add: I got the link to open! Thanks, redoctober. Issie!!! The article is fascinating. Thanks so much for posting it! I've got to really study it. On my first skim read I noticed it mentions Kefir... I've got to research how that differs from the SCD 24 hour yogurt which I eat for low lactose probiotics to help my damaged gut. Anyone here ever make Kefir? i love cheese... histamine and now calcium might be a problem? ACK!

I was tested for celiac. It was negative. When i couldn't stand the pain, bloating, and brain fog any longer I tried the SCD diet as outlined in "Breaking the Vicious Cycle" by Elaine Gottschall. See pecanbreaddot com and breakingtheviciouscycledotinfo and read the book reviews on Amazon. It was miraculous. Within four days my brain felt like a fog had lifted, my insane carb cravings vanished, and my pain and bloating stopped. I did feel like I had the flu the first couple of days.. they call that die-off. When I tweaked the SCD to the GAPS diet (long simmering bone broths, sauerkraut, probiotic pickles etc) I unwittingly started eating a very High Histamine diet! I felt okay on it although I started having bloating and pain again occasionally. I thought I was allergic to something but I couldn't figure out what it was. I thought I was eating a really healthy diet and doing wonders for my gut flora. Well... I felt pretty good until after I came down with the swine flu! I never fully recovered and a few months later...I got really sick with POTS. I believe the high histamine diet played a big part in how bad my POTS got after the virus because the histamine coupled with MCAS/MCAD intensified the cascade of symptoms. If MCAS/MCAD issues are a problem... anti-histamines might be helpful. It makes sense if you go to the trouble of trying to block histamine that trying to limit histamine in the first place is probably a good idea. I feel so much better on the ZZ protocol and with a low histamine version of the SCD. I do eat the 24 hour homemade low lactose yogurt which has histamines but as long as I limit them elsewhere as much as I can I feel the benefits of healing my gut and putting good bacteria back in there is worth the histamine in the yogurt. (DAO is made in the small intestine so good bacteria should help restore gut health which will help create more DAO which will help with histamine.) I'm careful to eat fresh meat or freeze cooked meats right away and then reheat in the microwave because leftover meats keep increasing in histamine unless frozen right away. I eat a lot of just ripe bananas. The first successful celiac diets relied heavily on bananas. They can't have any green left on them so they need to at least have a few brown spots. Green bananas have too much starch which feeds bad intestinal bacteria. I don't think the latest SCD books stress how helpful bananas are for those with intestinal problems. The originator of the SCD, Dr. Haas, encouraged eating lots of ripe bananas and he did not rely as heavily on nuts like Elaine did. I found the stages as outlined on the pecanbreaddotcom site was very helpful although I found I could eat the yogurt earlier than they recommend. You can research more about histamine foods by googling histamine intolerance and HIT. NoMoreCrohnsdot com is another good website and I get my yogurt starter from lucyskitchenshopdotcom Best of luck to you! The diet is worth it. It is so wonderful to wake up one day and not remember the last time your stomach hurt.

Benadryl raises DAO so it is an anti-histamine PLUS it increases the enzyme which helps break down histamine. Double duty! I personally save Benadryl for emergencies or an occasional flare in symptoms because I have many drug allergies and I don't want to increase my risk of developing an allergy to it by taking it every day. ************************ http://www.ajcn.org/.../85/5/1185.full "Most antihistamines have no influence on DAO activity, although inhibition of DAO by cimetidine (Tagamet) and dihydralazine and increased activity by diphenhydramine (Benadryl) have been observed." ************************************************ http://www.examiner.com/holistic-health-in-phoenix/food-allergies-may-be-simply-a-dao-deficiency "Diamine oxidase, DAO, is essentially an enzyme that breaks down histamine in histamine rich-foods. DAO is produced in the small intestine. When found in lowered amounts, patients can experience allergic reactions to foods rich in histamine or red wine. In a study conducted of 45 patients with a known history of sensitivity to foods and wine, this study group was put on a histamine-food-free diet which eliminates, cheese, fish, hard cured sausages, pickled cabbage and alcoholic beverages. After four weeks on the diet, 33 out of 45 patients improved. Eight had total remission. In 12 out of 45 patients, there were no changes in symptoms. Some women note a remission of their allergic symptoms during pregnancy. This is possibly because, during pregnancy, the histamine degrading enzyme, diamine oxidase, is usually produced in high amounts. In fact, levels are known to be approximately 500 times higher in pregnancy." ********************************* What about Tagamet (cimetidine)????? Tagamet inhibits DAO... so while it is an anti-histamine... it also lowers the enzyme which helps break down histamine. Hmmm. What about taking Tagamet (cimetidine) and Claritin (Loratadine) together? Tagamet lowers DAO and it can increase the adverse effects of Claritin. ************************** http://www.livestrong.com/article/422960-loratadine-glucose/ "Loratadine Side Effects Even though loratadine is not supposed to cross into the brain, the drug may cause some drowsiness. According to loratadine's prescribing information, symptoms of overdose include tachycardia, headache and somnolence. The most common side effects are dry mouth, fatigue and allergic reactions such as rash, gastric disturbances and nausea. You should avoid drinking alcohol while taking loratadine due to alcohol's sedative effects. People taking cimetidine (Tagamet), ketoconazole, quinidine, fluconazole and fluoxetine should exercise caution when taking loratadine, because these drugs can increase the adverse effects of loratadine. Additionally, breastfeeding women and children less than 2 years of age should not take Loratadine."

Issie, you're welcome. I don't think most doctors know much about Tagamet. It is an older antihistamine. My son was on it once because it was supposed to help with warts. I found out about Tagamet and DAO by researching histamine intolerance. My rheumi suggested trying different combos of antihistamines to see what worked best for me and I bought some Tagamet to try. Luckily I only took it a couple of times before finding it was on the avoid list for histamine intolerance. I'm sure it is a great drug for a lot of people and it might be right for people reading here too but I thought I should write about it so those with MCAS/MCAD will research it for themselves and talk to their doctors about it. I'm not a doctor so I can't give medical advice plus I don't want to disobey any rules. So please, please talk to your doctor. When I came down with a bad case of POTS (I think I've had it mild most of my life) it was a few months after having the swine flu with 12 days of fever (I almost never get a fever and my normal body temp is low.) I had gone gluten-free in the previous year and my IBS symptoms were vastly improved. I could not even digest lettuce or raw fruit when I first went on the SCD diet. I felt like the SCD was a miracle at first. Bloating and pain mostly disappeared and following the stages on pecanbreaddotcom I was slowly able to add foods and start digesting fruits and veggies again. Well... shortly before I got really sick I had tweaked my diet to be more like the GAPS diet with lots of bone broths, sauerkraut, probiotic pickles plus I kept eating the 24 hour low lactose yogurt the SCD has you make. I also had experienced enough gut healing that I was eating a lot more vegetables like tomatoes and spinach which I hadn't been able to eat for ages. What I didn't know was that when I tweaked my diet to what I thought was an even healthier diet... what I did was in fact... create a VERY HIGH HISTAMINE diet!!!! Well low and behold... DAO produced in the gut? Damaged gut from years of IBS/undiagnosed celiac.. top with intermittent mast cell problems and EDS classical 2. Throw in high histamine on top of low DAO. Catch a virus and get pneumonia. Add in meds which promote mast cell degranulation...Voila! "Perfect Storm" created to take a mild and undiagnosed case of POTS into a full blown medical mystery tour!

Hi Potluck, When I first got my really bad POTS symptoms, my cardiologist put me on Midodrine and a beta blocker. I just kept feeling worse with episodes of extreme anxiety. My doctor checked my metanephrines and they were over `10 times normal. She was sure that meant I had a pheo. So I had sonograms and MRI's one after the other until they had done my entire body except my head/neck. She consulted via phone with a pheo specialist who thought it sounded like it was in my carotid artery because of my symptoms and the previous negative test results everywhere else. I think the medical literature said something like metanephrines 4 times normal is virtually 100 percent for a pheo. I was practically planning my obit, I was so petrified and the fear just compounded the problem. Well, my head/neck MRI didn't show a pheo either! They were talking about sending me for a special test at a research facility to find the pheo they were sure was hiding somewhere. It was terrifying. In the meantime, I had called the cardiologist and asked if I should stop the midodrine because it was contra-indicated with a pheo. Two calls to the office and the nurse never called me back. My blood pressure was so low in the am that I was worried I wouldn't wake up one morning! Luckily, I got in with an endocrinologist who told me to quit the meds so he could retest my metanephrines ... off the meds...they went back to NORMAL. (I've always had hypotension so when my BP vascilated during my "episodes" sometimes my BP was high for me but never dangerously hypertensive) I read research that mentioned POTS with MCAD/MCAS patients should only use midodrine and beta blockers with "great caution"... so with that clue and a visit to a rheumatologist who listened to me I started the Z/Z protocol and I am feeling a lot better. When my POTS acts up, I sometimes think it would have been easier if I'd had an operable non-cancerous pheo but when I remember the terror of imagining a pheo in my carotid artery... I feel lucky I "only" have POTS. So... in my case it was either the beta blocker and/or the midodrine that helped send my metanephrines sky high but the silver-lining was it helped set me on the right path to find the MCAS meds that help. I learned that even when specialists are 99 percent sure you have something... they can be WRONG. BTW, I had very rapid weight loss when this all started and my butt and leg muscles atrophied quickly as if I was starving when I wasn't so that added to my fear I had a pheo. All that worry for naught! Deep breaths! I pray you get answers soon and I hope you get good news. My best, sweetfeather PS... a very low histamine diet helps me immensely. I was eating a lot of probiotic veggies... sauerkraut and Bubbies pickles and leftover organic meats during my metanephrine nightmare because I thought they were healthy and I had no idea they were loaded with histamine!

Caution! Tagamet (Cimetidine) can inhibit diamine oxidase!!! Those of us with MCAS/MCAD and/or HIT (histamine intolerance) do NOT want to inhibit diamine oxidase!!! Sure Tagamet is an antihistamine, but does Tagamet cause us more harm than good? There are other antihistamines that do not inhibit DAO and one which may actually increase it... Read the links below and be sure to consult your doctor: http://www.ajcn.org/.../85/5/1185.full "Most antihistamines have no influence on DAO activity, although inhibition of DAO by cimetidine and dihydralazine and increased activity by diphenhydramine have been observed." Diphenhydramine is Benadryl! I think this explains why Benadryl is so quick and effective for me... it INCREASES DAO activity. I save Benadryl for my emergency medication to help keep from developing a tolerance or allergy to it. ************************************************* http://www.medicheck...d=21&test=D-HIT "The present clinical experiences show that histamine intolerance is not congenital, but rather an acquired disease. A cause of histamine intolerance (HIT) may be drugs, which are inhibitors of the diamine oxidase." "The typical symptoms of histamine intolerance are headache, diarrhea, migraine, engorged or dripping nose and especially in connection with food incorporation asthma bronchiale and arrhythmia, hypotension, urticaria and dysmenorrhoea." ************************************************* Here's a list of drugs to AVOID: (I'm sorry it wouldn't format correctly for me on here.) http://www.ajcn.org/....expansion.html Histamine and histamine intolerance TABLE 5 Drugs releasing histamine or inhibiting diamine oxidase Substance class Agent interfering with the histamine metabolism Contrast media Muscle relaxants Pancuronium, alcuronium, D-tubocurarine Narcotics Thiopental Analgetics Morphine, pethidine, nonsteroidal antiinflammatory drugs, acetylsalicylic acid, metamizole Local anesthetics Prilocaine Antihypotonics Dobutamine Antihypertensive drugs Verapamil, alprenolol, dihydralazine Antiarrhythmics Propafenone Diuretics Amiloride Drugs influencing gut motility Metoclopramide Antibiotics Cefuroxime, cefotiam, isoniazid, pentamidin, clavulanic acid, choroquine Mucolytics Acetylcysteine, ambroxol Broncholytics Aminophylline H2-receptor antagonists Cimetidine (Tagamet) Cytostatics Cyclophosphamide Antidepressants Amitriptyline