juliegee

Yep, it's almost like Goldilock's Syndrome Everything has to be- just right. Moving is a HUGE stressor & could flare mast cells in those susceptible. Will symptoms go away on their own? With true mast cell disorder- probably not. If you think your symptoms may be caused by overly reactive mast cells, consider an OTC antihistamine & see if it helps. If it does, could be very telling...

My resting HR used to be in the 90-100's UNTIL I began earnestly exercising. It's now around 65 BPM. My disease process was at it's worst when my HR was highest- so exercise was pretty close to impossible at that point. Once I stabilized somewhat (on MCAD meds), I started walking to the bathroom , to the mailbox, to the corner, around the block, etc. Now, I run 4-5 miles every other day. Deconditioning did not cause my illness; but conditioning has greatly stabilized me.

Agreed- great job, Doozlygirl!!! I think the MCAS/MCAD DX has been around a little longer than you indicated- I was DXed about 5 years ago by a mast cell specialist at Brigham & Women's Mastocytosis Center of Excellence (new name!) But, you are correct that the World health Organization (WHO) is hammering out diagnostic criteria now. Mastocytosis occurs when there are too many mast cells. WHO came up with that DX in the 90's. Docs began to realize that here were some patients who had every symptom of mastocytosis and responded to the treatment but did NOT have too many mast cells- hence the evolution of MCAS/MCAD. Patients with this disorder have a normal number of mast cells,however they are OVERLY reactive and can do the same damage as too many mast cells. Also, I think the term "shockers" and "leakers" has been coined by sufferers, not physicians-(please correct me if I'm wrong!) but your description of mast cell degranulation among these two groups is right on the money. And, "leakers" can shock and "shockers" can leak so there is some variability among those categories. All patients with ANY mast cell disorder should carry an epi-pen to be safe, even without prior occurrence of anaphylaxis. Here's a blurb from the old Mastocytosis Society website that describes symptoms and treatment. Their new website is under construction: ______________________________________________ What is Mastocytosis or Mast Cell-related disorder? According to Merriam-Webster Online, mastocytosis (pronounced mas•to•cy•to•sis), means an "excessive proliferation of mast cells in the tissues." (Retrieved 4/6/09 from http://www.merriam-w...al/mastocytosis.) Mast cells are something that are produced naturally in every body, necessary to assist the body in fighting possible foreign threats to the system. Individuals with mastocytosis have an abundance of mast cells and the mast cells do not work properly in reaction to a trigger, sometimes unknown. In the early to mid-20th century, all forms of mast cell disease were undifferentiated and were grouped under the name mastocytosis. Mastocytosis specifically means "an abnormal increase in the number of mast cells," but we now know that definition, taken from the root words, relates to some very specific mast cell disorders, and may not apply to others. Some of the research done in the latter part of the 20th century laid the groundwork for much of the work done today. Over the last 30 years, there has been an explosion of interest in, and research into, the various mast cell diseases, resulting in many different categories being defined, and the definitions are still evolving. So, for the purposes of this section, we will refer to the general term mast cell diseases which encompasses the following very general subcategories*: Cutaneous Mastocytosis, refering to the skin, includingUrticaria Pigmentosa, refered to as UP, relating to hives and skin lesions Telangiectasia Macularis Eruptiva Perstans, refered to as TMEP, relating to a rare form of the skin disease, most often occuring in adults, and consisting of generaly smaller lesions than are typically seen in UP Systemic Mastocytosis, involving more than one (1) organ (skin, gastro-intestinal, liver, etc.), with or without cutaneous manifestations outlined above, includingIndolent Mastocytosis, relating to slowly developing Aggressive Mastocytosis, as it suggests, more aggressively developing Mastocytosis with associated hematologic disorder Mast Cell Leukemia Mast Cell Activation Disorder or Syndrome, referred to as MCAD Pediatric mast cell disorders typically include the followingSolitary Mastocytoma, as it suggests, a solitary or single "clump" of mast cells or lesions Urticaria Pigmentosa (explained above) Diffuse Cutaneous Mastocytosis, as it suggests, diffuse skin involvement of hives and lesions It is less common for children to suffer from systemic symptoms, but there are a number of cases. In 2000, at a meeting in Vienna, Austria, a consensus was reached about what criteria must be fulfilled for a diagnosis of Mastocytosis (see our Research article entitled A Consensus Document for more information). Many people met the new criteria. However, many patients who had been formerly diagnosed with Systemic Mastocytosis did not seem to fit into the agreed-upon criteria, possibly because their diagnostic work-up was done incorrectly, or was not conclusive, or because they were not tested for all the criteria. Over the last few decades, some researchers began differentiating between the different forms of mast cell diseases. A few began individually defining new categories, one of which is called Mast Cell Activation Syndrome or Disorder (MCAS/MCAD). Although the various forms of mast cell disease may present with some of the same symptoms, and may be treated with the same medications and avoidance of known triggers, the cause of the symptoms is what makes them separate, but related, entities. Indeed, mastocytosis and other mast cell disorders are heterogeneous, meaning they can present in many different ways. Ultimately, the cause of each different form of mast cell disease may dictate how they are treated. What are the Symptoms of Mast Cell Diseases? What we know about Systemic Mastocytosis is that in many cases, it is a neoplastic disease, meaning that it involves new or abnormal cell growth. (Please note - this may not apply to most cases of pediatric and/or familial Mastocytosis.) In this case, the cells involved aremast cells, which are normally contained in body tissues. Mast cells release certain mediators, or chemicals, of which one is histamine, into the body in response to certain events. People with Systemic Mastocytosis develop an increase in the number of mast cells, or they develop abnormally shaped mast cells, which may not function properly. In addition, the mast cells fail to die off when they are supposed to, further increasing the total mast cell burden. This die off is called apoptosis. Apoptosis is programmed into normal cells, but in people with mast cell disorders, the mast cells may fail to die off, resulting in an increased number of mast cells in the body. When these mast cells are triggered, they can degranulate, and release their contents all at once, or they can slowly leak their contents in response to a trigger. This can cause many acute and potentially serious symptoms, which include, but are not limited to, the following: Abdominal pain, Anaphylaxis, Blood pressure changes & shock, Bone pain (mild to debilitating), Chest pain, Cognitive difficulties/brain fog, Degenerative disc disease, Diarrhea, Dizziness/vertigo/lightheadedness, Faintness, Fatigue, Flushing, Gastroesophageal reflux, Hematological abnormalities, Hives & other rashes, Inflammation of the esophagus, Intestinal cramping and bloating, Itching, with and without rashes, Irritable bowel, Liver, spleen and other organ involvement, Malabsorption, Migraine headaches, Muscle pain, Nausea, Osteoporosis/Osteopenia, Peripheral neuropathy and paresthesias, Rapid heart rate, Vomiting People who have been told they have Mast Cell Activation Syndrome or Disorder (MCAS/MCAD) may have a normal, or nearly normal, number of mast cells. However, their mast cells "behave badly" - that is, they are easily triggered to release their contents, which results in many of the same symptoms that people with Mastocytosis experience. The danger of anaphylaxis and shock is present with MCAD/MCAS, but unlike Mastocytosis, this syndrome may not have the potential to progress to a more aggressive or malignant stage. Nevertheless, people with either Mastocytosis and MCAS/MCAD can be either very stable or extraordinarily ill on a day-to-day basis, and managing the unpredictability of the mast cell diseases and their symptoms can be quite challenging. How Are Mast Cell Diseases Diagnosed? Mast cell diseases can be diagnosed by: Skin biopsies Blood tests Bone marrow biopsy with aspirate flow cytometry Bone desity and bone scan Radiologic, CT scan Careful evaluation of response to treatment For more information on how mast cell diseases are diagnosed, please review our consensus document. How Are Mast Cell Diseases Treated? While a few people manage to remain stable and healthy by avoiding dietary and environmental triggers, many people with mast cell disease take a medication protocol that involves some or all of the following: H1 blockers - antihistamines like hydroxyzine (Atarax®), diphenhydramine (Benadryl®), Doxepin®, loratadine (Claritin®), and cetirizine (Zyrtec®) H2 blockers - antihistamines like ranitidine (Zantac®) or famotidine (Pepcid®) Leukotriene inhibitors like Singulair®, Accolate®, or Zyflo® Mast cell stabilizers like oral cromolyn sodium (Gastrocrom®), cromolyn sodium nasal solution (NasalCrom®) or Ketotifen (Apo®-Ketotifen, Zaditen®) In addition, many people require: Proton pump inhibitors like omeprazole (Prilosec®), pantoprazole (Protonix®), lansoprazole (Prevacid®) Inhaled bronchodilators such as albuterol (Ventolin®) Corticosteroids More aggressive forms of the disease may require the use of chemotherapeutic agents and/or cytoreductive therapies. Further information about the use of these agents in treating mast cell diseases can be found at cancer treatment centers.

I had a bad reaction too!

I think your church family did GOOD work- you fainted, had a credible witness (from a prior faint) at your TTT, and your insurance was restored. Can they pray for me??? I laughed at your post when you said that your church family prayed "you'd have the WORST time ever." Even God had to raise his eyebrow at that one. Whenever friends or family are having tests, I pray that the truth comes to light. You hate for a loved one to suffer, BUT our physicians NEED to know what they are dealing with. Yay- insurance!!! Your florinef schedule sounds reasonable with the last dose at 2PM. Hopefully, you will still be able to sleep. I will keep you in my thoughts and prayers and you see more docs to tweak your DX and treatment plan. Hugs- Julie

Great point Naomi or even vice-versa. We were told that my son's GI neuropathy was secondary to his autonomic dysfunction. The two commonly occur together. I also find it hard to believe that they aren't related

That is truly a MIRACLE- NO COINCIDENCE; having a nurse, who had already seen you faint from a seated position, actually present at your TTT!!! There was NO WAY that EP was going to dismiss you Many here, myself included, have fainted from a seated position. I think it has to do with being in one position for too long. So sorry that you had to endure another faint on the TTT (not fun ); but you had great documentation of all you endure on a daily basis. And to find out that you had already been DXed, but they forget to tell you OR treat you Grrrrrrrrr. I also wanted to mention that many have seizure-like activity before they faint. That's happened to me before. I recently got to witness my husband have what appeared to be a seizure right before he fainted this past sunner. It was very frightening to see. (He also has NCS/NMH- but is perfectly healthy between faints.) I'm surprised that your EP hasn't sen that before. It occurs when your brain is totally deprived of blood/oxygen & stops as soon as the patient is supine and blood supply is returned. OTC potassium is a great idea. Dr. Rowe contends that there is great benefit in the Slow k-8 (prescription)- in that IT also treats the NCS, as well as supplying the potassium that is lost from high doses of florinef. Many here, myself included, have gotten great relief from our tachy by supplementing with magnesium. If yours is low, that might be very helpful too. Magnesium is best taken at night as it will make you VERY sleepy. Messed up electrolytes (low potassium & magnesium) can actually worsen your HR/BP issues- so be sure to stay on top of that. Ask your doc about regular testing to be safe UNTIL you get to a stable florinef regimen. I know your symptoms are very severe, Since your florinef dose is higher than most, it may be a good idea to regularly monitor your BP. It can sneak up on you. An awful headache is a clue that your dose may be too much. Dr. Rowe recommends taking florinef in the AM as it can cause insomnia if taken later in the day. I see your doc has recommended differently. If your sleep is affected, maybe talk to your doctor about moving your second dose up to earlier in the day. I think my son was taking 0.3mg florinef at his worst & he took 2 Thermotabs (salt tablets) with each meal at that point and drank water/Gatorade non-stop. THAT helps the florinef work. I pray that it will be helpful for you. It was for my son and I. So happy you are finally getting the help you need after suffering for so long Healing Hugs- Julie

Here's a GREAT comprehensive article from Dr. Peter Rowe, an ANS specialist at Johns Hopkins- all about NCS (same as NMH) and more: http://www.cfids.org/webinar/cfsinfo2010.pdf 1. FLUDROCORTISONE Brand name: Florinef Type of drug: a mineralocorticoid steroid Indication: NMH or POTS Action: Florinef acts in the kidney to help the kidney retain sodium that would otherwise be lost in the urine, and it may also help blood vessels constrict more readily in response to epinephrine and norepinephrine. It helps the body avidly retain the salt you eat. It does so at the expense of losing potassium into the urine, so it is important to take in adequate amounts of potassium each day. We recommend potassium supplements when people start on Florinef, regardless of the serum potassium level, and especially if individuals remain on the drug for several months. A sustained release potassium preparation (containing 8-20 mEq) given once daily has been well tolerated by our patients. In our clinical trial of Florinef in adult chronic fatigue syndrome patients with NMH, the drug was not effective when given by itself. Several studies suggest the drug is helpful in treating NMH and POTS when given in combination with an increased intake of salt and other medications (for example, with a low dose of a beta blocker), but no rigorous studies of combination therapy have been conducted, and no studies in adolescents have been performed. Common confusions: Cortisone and fludrocortisone differ. At the doses used in clinical practice, Florinef has minimal anti-inflammatory properties, in contrast to cortisone or prednisone, and it has no effect on blood sugar as cortisone does. Florinef is not a muscle building (anabolic) steroid. NMH or POTS patients taking Florinef should be on a high salt diet. Common side effects: To reduce the chance of Florinef causing an elevated blood sodium level, make sure to drink lots of fluids while taking Florinef. Some individuals complain of headache after Florinef and some develop worse CFS symptoms (more lightheadedness or fatigue), abdominal discomfort of a new type or severity, new chest discomfort, or tearfulness and depression. Depression occurs in fewer than 1 in 20 patients, but patients need to be aware of this when they start on the drug, and to know to stop Florinef if such depressed mood occurs. Some have found that minor side effects will disappear after a couple of weeks, and it is worth persevering with the medication provided that the side effects are minor. Some develop worse acne on Florinef. The tablet has a tiny amount of lactose in it, and may cause discomfort to those who are extremely allergic to milk protein. Special pharmacies can compound the drug without lactose or milk protein (e.g, Abrams Royal Pharmacy, 8220 Abrams Rd., Dallas, TX 75231; Tel: 214-349-8000; Fax: 214-341-7966). With high doses, or even low doses over a long period of time, Florinef can lead to an elevation of blood pressure (BP), especially when other medications like oral contraceptives are added to the regimen. For this reason, we recommend that BP be monitored carefully, especially in the weeks after starting on the drug, and monthly once a stable dose is achieved. Suggested doses for patients with NMH or POTS: Because the optimal dose can vary considerably, we suggest that those who use Florinef begin with a low dose and increase it gradually. We recommend beginning with a week of increasing salt and fluid before starting on Florinef to ensure better tolerance of the drug. Once you are ready to start, begin with ½ tablet per day for a week, then increase to a full 0.1 mg tablet daily. A slower dosage advance ment is to start with 1/4 tablet per day (0.025 mg). If the 1/4 tablet dose is tolerated for 4-7 days, increase to ½ tablet for 4-7 days, then to 3/4 tablet or a full 0.1 mg tablet. By stepping up the dose gradually, you can better determine the right dose (some patients may only need ½ tablet or ¾ tablet). Some patients report that splitting the dose (half in the morning and half with the evening meal) provides a more even effect, but occasionally people have to return to a once a day morning dose because the Florinef taken later in the day causes them to develop insomnia. Each patient’s tolerance of the drug and response to it is somewhat different, so we recommend regular visits while the doses are being adjusted. If there is no improvement, or more bothersome side effects appear (worse headaches, substantial weight gain, and certainly depressed mood) we recommend stopping the medication. If people continue to experience some benefit from week to week at a particular dose, it makes sense to continue on that dose. If there are no adverse effects on a dose of 0.1 mg per day, but no impressive therapeutic benefits have occurred after about a month, we will try increases to a maximum of 0.15 or 0.2 mg (1 ½ - 2 tablets) per day. Whether further increases would be beneficial is unclear. If unsure about whether the drug is having a beneficial effect, it can be stopped for a few days to see if symptoms worsen. When Florinef is helping, but only incompletely, we usually continue this medication and then add other classes of medication to it. Comments: It is important to be sure that you are taking an adequate amount of fluid. We recommend checking the serum electrolytes periodically, but the optimal frequency for doing so is not established. Because licorice root can have the same effect on blood pressure as Florinef, combining these two medications should be avoided. If BP increases over time, a reduction in the Florinef dose may be indicated. Use in pregnancy: consult with your health care provider.

Well, that's just what we expected, right? It's great to have some answers. I don't think you need to worry about the IST vs. POTS.- may just be semantics or a doc that isn't well-versed in dysautonomia. IST is a high HR all of the time, in POTS it is high with postural changes, i.e. standing. Honey, 0.4 florinef is pretty high. What dose are you on now? How are you tolerating it? I think you might need to drink oodles of water & take salt tablets. If you do end up on that high of a dose, you might need to take a prescription potassium called slow-K-8. You could ask your doc about that. A bad headache could be a sign that your BP is too high. You could take your BP several times a day to monitor how it is responding to the florinef. I think that your neuropathy & GI issues might be related to your dysautonomia. They can all overlap. I hope you get to Vandy or find the help you need soon. Congrats on the confirmation of all you already knew!!! Hugs- Julie

I swing between Reynauds & Erythromelalgia. When I am very busy of stressed (even standing!) my hands and feet vasoconstrict. and no blood gets to them. However, after eating, if I sit down- my hands (and feet) turn hot, red, and swollen. I suspect that you (and I have) small fiber neuropathy- which is often cormorbid with POTS

Bren- One other thought, your signature indicates that you are taking 10 mg zyrtec daily- really? Hope so, as that will help check your mast cells. IF you can tolerate that, maybe add one at night. Doxepin is wicked strong. Great stuff when you need it, but huge guns, when you have trouble tolerating meds. Zyrtec is fabulous- does the job with VERY minimal side effects. Let us know what you find out- Julie

Hi Bren- So sorry. I can't tolerate ANY BB's either- MULTIPLE attempts. I've had all of the symptoms you describe and more- including severe facial parasthesia, fainting, and early stage heart failure. If you have MCAD, or any allergy/asthma issues- BB's are contraindicated and can GREATLY worsen symptoms. Talk to your doc about other options. I'm not sure what your specific HR abnormalities are; but when my MCAD was uncontrolled- so was my tachy. Magnesium can naturally calm that w/o the severe side effects of BB's. If the MCAD is causing the irregular heart rhythms; you'd be better served stabilizing your mast cells. Have you seen a mast cell specialist? Julie

Hey Blue- Good question. Mast cell disease has many different presentations, but they are easily identifiable, once you familiarize your self with symptoms. Here is a blurb from the old Mastocytosis Society website that should answer all of your questions.(Their new site is under construction.) What is Mastocytosis or Mast Cell-related disorder? According to Merriam-Webster Online, mastocytosis (pronounced mas•to•cy•to•sis), means an "excessive proliferation of mast cells in the tissues." (Retrieved 4/6/09 from http://www.merriam-w...al/mastocytosis.) Mast cells are something that are produced naturally in every body, necessary to assist the body in fighting possible foreign threats to the system. Individuals with mastocytosis have an abundance of mast cells and the mast cells do not work properly in reaction to a trigger, sometimes unknown. In the early to mid-20th century, all forms of mast cell disease were undifferentiated and were grouped under the name mastocytosis. Mastocytosis specifically means "an abnormal increase in the number of mast cells," but we now know that definition, taken from the root words, relates to some very specific mast cell disorders, and may not apply to others. Some of the research done in the latter part of the 20th century laid the groundwork for much of the work done today. Over the last 30 years, there has been an explosion of interest in, and research into, the various mast cell diseases, resulting in many different categories being defined, and the definitions are still evolving. So, for the purposes of this section, we will refer to the general term mast cell diseases which encompasses the following very general subcategories*: Cutaneous Mastocytosis, refering to the skin, including Urticaria Pigmentosa, refered to as UP, relating to hives and skin lesions Telangiectasia Macularis Eruptiva Perstans, refered to as TMEP, relating to a rare form of the skin disease, most often occuring in adults, and consisting of generaly smaller lesions than are typically seen in UP Systemic Mastocytosis, involving more than one (1) organ (skin, gastro-intestinal, liver, etc.), with or without cutaneous manifestations outlined above, including Indolent Mastocytosis, relating to slowly developing Aggressive Mastocytosis, as it suggests, more aggressively developing Mastocytosis with associated hematologic disorder Mast Cell Leukemia Mast Cell Activation Disorder or Syndrome, referred to as MCAD Pediatric mast cell disorders typically include the following Solitary Mastocytoma, as it suggests, a solitary or single "clump" of mast cells or lesions Urticaria Pigmentosa (explained above) Diffuse Cutaneous Mastocytosis, as it suggests, diffuse skin involvement of hives and lesions It is less common for children to suffer from systemic symptoms, but there are a number of cases. In 2000, at a meeting in Vienna, Austria, a consensus was reached about what criteria must be fulfilled for a diagnosis of Mastocytosis (see our Research article entitled A Consensus Document for more information). Many people met the new criteria. However, many patients who had been formerly diagnosed with Systemic Mastocytosis did not seem to fit into the agreed-upon criteria, possibly because their diagnostic work-up was done incorrectly, or was not conclusive, or because they were not tested for all the criteria. Over the last few decades, some researchers began differentiating between the different forms of mast cell diseases. A few began individually defining new categories, one of which is called Mast Cell Activation Syndrome or Disorder (MCAS/MCAD). Although the various forms of mast cell disease may present with some of the same symptoms, and may be treated with the same medications and avoidance of known triggers, the cause of the symptoms is what makes them separate, but related, entities. Indeed, mastocytosis and other mast cell disorders are heterogeneous, meaning they can present in many different ways. Ultimately, the cause of each different form of mast cell disease may dictate how they are treated. What are the Symptoms of Mast Cell Diseases? What we know about Systemic Mastocytosis is that in many cases, it is a neoplastic disease, meaning that it involves new or abnormal cell growth. (Please note - this may not apply to most cases of pediatric and/or familial Mastocytosis.) In this case, the cells involved are mast cells, which are normally contained in body tissues. Mast cells release certain mediators, or chemicals, of which one is histamine, into the body in response to certain events. People with Systemic Mastocytosis develop an increase in the number of mast cells, or they develop abnormally shaped mast cells, which may not function properly. In addition, the mast cells fail to die off when they are supposed to, further increasing the total mast cell burden. This die off is called apoptosis. Apoptosis is programmed into normal cells, but in people with mast cell disorders, the mast cells may fail to die off, resulting in an increased number of mast cells in the body. When these mast cells are triggered, they can degranulate, and release their contents all at once, or they can slowly leak their contents in response to a trigger. This can cause many acute and potentially serious symptoms, which include, but are not limited to, the following: Abdominal pain Anaphylaxis Blood pressure changes & shock Bone pain (mild to debilitating) Chest pain Cognitive difficulties/brain fog Degenerative disc disease Diarrhea Dizziness/vertigo/lightheadedness Faintness Fatigue Flushing Gastroesophageal reflux Hematological abnormalities Hives & other rashes Inflammation of the esophagus Intestinal cramping and bloating Itching, with and without rashes Irritable bowel Liver, spleen and other organ involvement Malabsorption Migraine headaches Muscle pain Nausea Osteoporosis/Osteopenia Peripheral neuropathy and paresthesias Rapid heart rate Vomiting People who have been told they have Mast Cell Activation Syndrome or Disorder (MCAS/MCAD) may have a normal, or nearly normal, number of mast cells. However, their mast cells "behave badly" - that is, they are easily triggered to release their contents, which results in many of the same symptoms that people with Mastocytosis experience. The danger of anaphylaxis and shock is present with MCAD/MCAS, but unlike Mastocytosis, this syndrome may not have the potential to progress to a more aggressive or malignant stage. Nevertheless, people with either Mastocytosis and MCAS/MCAD can be either very stable or extraordinarily ill on a day-to-day basis, and managing the unpredictability of the mast cell diseases and their symptoms can be quite challenging. How Are Mast Cell Diseases Diagnosed? Mast cell diseases can be diagnosed by: Skin biopsies Blood tests Bone marrow biopsy with aspirate flow cytometry Bone desity and bone scan Radiologic, CT scan Careful evaluation of response to treatment For more information on how mast cell diseases are diagnosed, please review our consensus document. How Are Mast Cell Diseases Treated? While a few people manage to remain stable and healthy by avoiding dietary and environmental triggers, many people with mast cell disease take a medication protocol that involves some or all of the following: H1 blockers - antihistamines like hydroxyzine (Atarax®), diphenhydramine (Benadryl®), Doxepin®, loratadine (Claritin®), and cetirizine (Zyrtec®) H2 blockers - antihistamines like ranitidine (Zantac®) or famotidine (Pepcid®) Leukotriene inhibitors like Singulair®, Accolate®, or Zyflo® Mast cell stabilizers like oral cromolyn sodium (Gastrocrom®), cromolyn sodium nasal solution (NasalCrom®) or Ketotifen (Apo®-Ketotifen, Zaditen®) In addition, many people require: Proton pump inhibitors like omeprazole (Prilosec®), pantoprazole (Protonix®), lansoprazole (Prevacid®) Inhaled bronchodilators such as albuterol (Ventolin®) Corticosteroids More aggressive forms of the disease may require the use of chemotherapeutic agents and/or cytoreductive therapies. Further information about the use of these agents in treating mast cell diseases can be found at cancer treatment centers. Julie

Hi Anna- I just saw your post. SCARY episode with your daughter- sounds like early anaphylaxis. Have your children had any traditional allergy testing (skin scratching) done? That's a good place to start. They may be suffering from traditional allergies. Identifying them, and avoiding them may be hugely beneficial. If that turns out negative OR if symptoms persist when they haven't been exposed to their known allergen; MCAD should be suspected. It does tend to be familial and overlap with dysautonomia and connective tissue disorders. Oh dear , I just saw your signature- the kids ALREADY are Dxed with EDS and dysautonomia. I'd check in with the allergist pronto- if you haven't already had testing done. Your kids are very lucky to have such a smart & savvy Mama. Here is a link to an International Yahoo Group for patients with (or who suspect they have) all three DXes: http://uk.groups.yahoo.com/group/theelephantproject/ Keep us posted on what you find out. Hugs- Julie

Yay!!! VERY Brave of you to try combos as opposed to one thing at a time. Regardless, can't mess with success- congrats!!! Hope it's sustained. Keep us posted.

Yay- graduation! There's so much overlap in symptoms. I still think what you are experiencing is physiological as opposed to psychological. For whatever reason, autonomic stuff DOES worsen in stressful situations; still not a panic attack. http://helpguide.org/mental/anxiety_types_symptoms_treatment.htm Many with NMH, NCS, vasovagal syncope- NEVER pass out. My son never truly had a complete faint, just repeated multiple daily attacks of pre-syncope that always began with that anxious feeling you are describing. Dr. Peter Rowe, at Hopkins, made it very clear that Mack's symptoms were physiological in nature (caused by the massive adrenaline release that preludes the pre-syncope) as opposed to psychological weakness of some sort. I read about your exercise program. Very cool. I have had a similar improvement. I run 4-5 miles every other day. IF I am having a bad day, I still complete my mileage- just go slower. Like you, I lose my improvement if I miss a run. Fast walking on a bad day definitely helps maintain my progress. I suspect you are right & that the exercise will further stabilize you.

It's WONDERFUL that you even tried to accomplish that for your Mom and other patients, Janie. I know the obstacles exist. I also know that they can be overcome with enough $$$. It's just a really groovy dream for now ...till I win.

Jangle, My son has NMH/NCS. During his TTT, his BP increased little (if at all) while he was experiencing acute anxiety prior to his faint. He reported many symptoms- very anxious, nauseous, lightheaded throughout the test- yet his BP and HR remained stable. At 35 mins. his HR did climb to 140BPM immediately prior to a precipitious BP drop (to an immeasurable level) and he fainted and barfed simultaneously . According to his ANS doc at Hopkins, the patient intuitively knows an episode of syncope is imminent (massive adrenaline release), despite the fact that vitals often remain stable. You may not be experiencing hours of unstable BP. "Now I read that things like MCAD and associated panic attacks like these might have high blood pressure." I'm a little confused, MCAD is not associated with panic attacks, nor do I think you are experiencing them. I suspect that you are experiencing cardiovascular collapse that can give you a panicky feeling prior to syncope. This is different from a panic attack. In some with MCAD, the BP temporarily rises to compensate for the drop in BP. If you are hypertensive, which you may not be, it's probably a temporary compensatory mechanism. When that happens in class, try shifting around, crossing your legs, squeezing your thigh muscles, etc. Sometimes counter-manuevers like these can help. Julie

For those of you in the states, have you ever seen those Cancer Care Centers of America TV commercials? You know, the ones that offer late stage or complex cancer patients HOPE. I LOVE their comprehensive, patient-centered, immediate, get-down-to-business approach. I LOVE how all of the caregivers meet with the patient at one time...instead of having exhausted, deathly ill patients trek all over town, chasing one doc after another only to find little or no help. Wouldn't it be wonderful if WE had something like that? ...A place where we could meet with an autonomic specialist, an exercise physiologist, a nutritionist, a supportive psychologist, and ANY other specialist we need- geneticist, connective tissue, mast cell, rheumatologist, endocrinologist, mitochondrial, nephrologist, GI, etc. AND, they ALL "get" how their specialties interplay with dysautonomia. A place where we were treated respectfully and believed. A place where we received prompt help and didn't have to wait years for a DX... Gotta go buy a lottery ticket now.

I (and many others here!) have a compromised immune system. My IgG is less than 500 (750-1500 is normal.) Have your immunoglobulins checked. Some have had benefit with IVIG. Julie

Hi Linda- I often have blue feet. They DO ache when deprived of proper circulation. I haven't noticed that eating makes them blue- it occurs for me when I am feeling stressed- i.e.lots to do in a short period... Perhaps your hypovolemia is worsened after eating because your limited blood supply is shunted to your GI tract? Julie

I have heard great things about Dr. "A." Very cool to be getting to the root of your issues So many of us deal with hypoglycemia....does this help explain THAT? I also eat high protein- for that very reason. Hope this leads to a better treatment plan. Julie

((((((HIS))))) How wonderful to finally have confirmation. So many of us push ourselves way beyond what we should have because our doctors attribute our symptoms to anxiety. Grrrrrr. Fingers crossed that you will fine tune your treatment plan with your new doc. Julie

Careful, Tenille- I have had that exact same reaction to several drugs- sulphur and erythromycin. It WAS an allergic reaction in my case. My whole body was covered in the worst sunburn of my life- without sun exposure & I even got a high fever. Talk to whomever is covering for your doc- stopping prednisone cold turkey is NOT good, but NEITHER is continuing to take something that you are allergic to ...

I have the same problem- 3 doses of Miralax a day. How about Milk of Magnesia? I've been told that can safely be taken long term.