firewatcher

Kathy, If you don't mind my asking, what underlying condition? My hormone levels are also "off," almost to the point of hypogonadism, but no doctor has yet mentioned that word. My OB/GYN now has me on hormone replacement therapy, but it does not help my POTS symptoms.

I'm going to wade into this one too (big surprise! ) I called my Dad (former Diabetes Drug rep/Dr. of Pharmacy) and asked him to clarify this for me. I'm really foggy in the head, but here goes... Heart Disease/High BP is the "unrecognized," usually final (and fatal) condition that follows diabetes. You can have heart disease without diabetes, but if you have diabetes and it is not well controlled you WILL get heart disease. The beta-blockers mask the symptoms of hypoglycemia, so the diabetes remains undiagnosed longer and thus progresses. Beta-blockers won't mess with your blood glucose levels, they will mask your normal response to their fluctuations. That being said, there is an auto-immune component in POTS that could cause type 1 diabetes and beta-blockers would also mask that, but there is also reactive hypoglycemia in POTS as well. AND...if you don't exercise because of OI and you get overweight, you could get type 2 diabetes... but he said that beta-blockers should not actually cause diabetes (I am on Inderal, so he actually cares about this!) he's not just trying to dissuade me. Wading out now, and wandering off into the fog.............

My eyes aren't droopy, but one eye will not move inward to focus anymore (and I KNOW it used to.) What is your fatigue like? All over, weakness in your arms and legs? How about repetitive motion? Can you do two or three repetitions of something (raising a leg) and then just not be able to?(Classic MG) Have you had an esophageal motility study done? Sometimes it's a GI thing. There are many things that can cause the chewing/swallowing thing! Get the blood tests, it will show more (at least maybe in your case) I'll let you know what the neuro-opthamologist says about it. Jennifer

Angela, Are you using guifenisen (mucinex?) It won't cause any tachycardia issues and will thin out the secretions so that they actually come out. If I feel like I'm going to have a sinus infection I start that and the sudafed PE plus the neti pot with extra salt and hotter water. The hot water helps me so much with the pain! Warm/Hot washcloths over the sinuses and nose help too (lay them on your face and breathe through your nose, through the steaming cloth) you can do this laying down, so it's POTS friendly. I am sorry you have to deal with this. Feel better soon! Jennifer

Got my acetylcholine receptor antibody test results today: AChR-binding antibody 0.25 nmol/L AChR-blocking antibody 7% Reference Intervals * Negative: 0.00-0.24 nmol/L * Borderline: 0.25-0.40 nmol/L * Positive: >0.40 nmol/L The neurologist said it "looked fine." Um, is it? I have antibodies, and it's not negative, but it's not high enough to be positive? But of course I also have three endocrinologists debating whether or not I have/will have Hashimoto's thyroiditis: I have an antibody titer that is well above normal for thyroglobulin, but my T3 and T4 are OK at the moment, but I have previous hypothyroidism... So much for science...I need another flower (for plucking petals) or maybe that magic 8 ball. I think I'll make tea tonight...anyone read tea-leaves?

I don't know if this will help/make any sense, it's tooooooo early in the morning. My husband is a pilot. On the longer flights your body is exposed to less pressure and NO humidity for a longer time (like being on an 8,000 ft. tall mountain and no humidity.) You've got even less pressure on the arteries than at sea level, and no exercise to cause circulation or constriction. If your BP is swinging trying to compensate, you're also getting POTS adrenal surges, so you are having "panic attacks." If you have a mast cell disorder, the lack of humidity may be a trigger. Try drinking more, carry a saline nasal spray and use it every 30 minutes or so, wear compression garments (try tight biker shorts and compression socks for you men) and maybe have a drink. I flew from one side of the US to the other without too much of a crash last year, I think Klonopin and a nap immediately after the flight made a world of difference. I still hate to fly, but medicated, it was better.

Janie, Nope, NOT crazy...if the cuff was on the raised arm, all the blood was leaving it and the pressure in that arm was lower. I took mine with one arm in the air and the one with the cuff was at my side. I think my BP spiked because my body was desperately constricting, trying to pump blood up higher to meet the postural demand. (I get super dizzy if I raise my arms above my head.) Don't worry too much about the BP readings, they are not going to be normal, just make sure you stay hydrated!

If your weight had dropped, I'd think that you were hypovolemic...no clue. Sorry. As to the flight, try to find out the least crowded flight you can on the biggest plane, get a wheelchair at the airport, and once onboard try to find a complete row to yourself if you can. Put up all the armrests and lie down across the seats. If the flight has room, the flight attendants shouldn't freak out about it. If you can, upgrade to first class, those seats recline fairly well. Hang in there and keep us posted. BTW, my BP goes to 173/149 if I put my arms above my head but goes to 96/83 if I just stand still.

Janie, have you lost a lot of weight recently? You may be hypovolemic. My BP rises like that if I am low on fluids or in pain. Try drinking more and see if it helps? Jennifer

Maxine, You don't have to swallow the pills! If you get the capsules, you can open them and sprinkle the powder on something like jelly or chocolate syrup to kill the flavor, don't do honey, it will kill the bacteria. This is what I did with my kids before they could swallow pills. They also make chewable tablets of acidophilus! They even have dairy free acidophilus (a bit harder to find!)

Maxine, EVERY time I have to take an antibiotic, I also take acidophilus tablets/capsules at the midpoint between doses. If you take it with the antibiotic, the good bacteria will simply die once it comes into contact with the medication and never get into your gut. It helps me with many of the nasty side effects including yeast overgrowth. I do the same with my kids when they have to take antibiotics for ear infections, strep, etc. Get new acidophilus every year or so and don't keep it over your stove or where it gets warm or it will die and be ineffective. Feel better! Jennifer

I get them too. Your GYN can call you in a prescription for a pill that will knock it out fast [Fluconazole (Diflucan)] Or you can try the OTC thing, it just takes longer and is messy. Don't suffer! Hope you feel better soon! Jennifer

Albuterol and other bronchodilators are an alpha-adrenergic agonists (stimulates epinephrine/norepinephrine---super-tachycardia!) The other inhalers are steroids, usually plus a dilator. The nasal sprays are steroids too, but they work great for allergies. I have not noticed any problems with mine (rhinocort.)

"Why the **** are mornings so difficult?" Its a circadian thing...that's why so many heart attacks happen in the morning. I am sitting here trying to wake up, feeling like an utter zombie with my heart going thumpa-thumpa-thumpa.... because on top of all this @#$% I have a circadian phase delay! My body thinks it's still 3 or 4 in the morning and I should be asleep! If you are on a beta blocker, take it first thing. Otherwise, drink a lot of something and squeeze into those compression stockings. I was surprised at how much they helped me get through the day. I thought I would feel like a balloon animal, with someone squeezing my feet but I LOVE my compression garments. If you can't stand the hose, get a "thigh slimmer" shapewear girdle (like spanx, just make sure its firm control or higher) it helps too. Good luck, I feel your pain...zzzzzzzzzz

Radha, My neurologist says you can. I am having severe muscle weakness after exercise (3-4 repetitions, not after an hour or even 10 minutes) and one eye will not move inwards to focus. He has ordered the blood test for MG: acetylcholine receptor antibody. I also am going to a neuro-opthamologist in two weeks. I get the results of the blood work Monday. I will let you know if I find anything else out. From my reading, it could be MG or just plain POTS.

An article moving in the direction that many of us are going: http://www.ingentaconnect.com/content/ftd/...000002/art00012 Authors: Reinstein, Eyal1; Mekori, Yoseph A; Mor, Adam Source: Expert Review of Clinical Immunology, Volume 4, Number 2, March 2008 , pp. 267-274(8) Publisher: Expert Reviews Abstract: Allergy and autoimmunity are complex inflammatory processes caused by dysregulation of the immune system. There are select situations in which allergy and autoimmunity coexist pathologically. Traditionally considered unrelated, recent evidence suggests unexpected roles for allergic mediators in several autoimmune diseases. This review presents updated evidence for allergic mediators in several autoimmune diseases, as well as autoimmune phenomena in mast cell-related conditions. We will describe the concomitant manifestation of these conditions in patients and in animal models. The involvement of the main effectors of the immune system mast cells, T lymphocytes, antibodies and cytokines in both conditions is also discussed. Keywords: allergy; antibody; autoimmunity; inflammation; mast cell; T lymphocyte Document Type: Research article DOI: 10.1586/1744666X.4.2.267 Affiliations: 1: Instructor of Medicine, Department of Medicine B, Meir General Hospital, Kfar-Saba, 44281, Israel and, The Sackler School of Medicine, Tel-Aviv University, Israel., Email: eyalre@post.tau.ac.il http://www.nature.com/nature/journal/v420/...ature01324.html insight Nature 420, 875-878 (19 December 2002) | doi:10.1038/nature01324 Search Pubmed for o Christophe Benoist o Diane Mathis progress Mast cells in autoimmune disease Christophe Benoist & Diane Mathis Abstract Mast cells are known to be the primary responders in allergic reactions, orchestrating strong responses to minute amounts of allergens. Several recent observations indicate that they may also have a key role in coordinating the early phases of autoimmune diseases, particularly those involving auto-antibodies.

Why SSRI's work for MCAD and POTS? What is the effect of fluoxetine on mast cell? Published: Tuesday, December 23, 2008 - 10:01 in Health & Medicine http://esciencenews.com/articles/2008/12/2...etine.mast.cell Mast cells are now recognized as "granular cells of the connective tissue", whose activation exacerbates allergic immune responses and as key players in the establishment of innate immunity as well as modulators of adaptive immune responses. The role of mast cells in the gastrointestinal mucosa is not only to react to antigens, but also to actively regulate the barrier and transport properties of the intestinal epithelium. In clinical studies, it has become clear that psychological factors, especially anxiety and depression, play an important role in gastrointestinal diseases by precipitating exacerbation of symptoms. Fluoxetine hydrochloride (fluoxetine) is a kind of selective serotonin reuptake inhibitors (SSRIs), which belong to a class of antidepressants used in the treatment of depression and anxiety disorders. The research team led by He-Shen Luo, from the Renmin Hospital of Wuhan University of China, investigated the effects of fluoxetine on mast cell morphology and rMCP-1 expression in gastric antrum in a rat model of depression. This will be published on December 7, 2008 in the World Journal of Gastroenterology. A Sprague-Dawley rat model of chronic stress-induced depression was established. Fifty experimental rats were randomly divided into the five groups: normal control group, fluoxetine + normal control group, depressed model group, saline + depressed model group, and fluoxetine + depressed model group. Laser scanning confocal microscopy (LSCM) immunofluorecence and RT-PCR techniques were used to investigate rMCP-1 expression in gastric antrum. Mast cell morphology was observed under transmission electron microscopy. They found that depression induced mast cell proliferation, activation, and granule hyperplasia. Compared with the normal control group, the average immunofluorescence intensity of gastric antrum rMCP-1 significantly increased in depressed model group (37.4 ? 7.7 vs 24.5 ? 5.6, P < 0.01) or saline + depressed model group (39.9 ? 5.0 vs 24.5 ? 5.6, P < 0.01), while there was no significant difference between fluoxetine + normal control group (23.1 ? 3.4) or fluoxetine + depressed model group (26.1 ? 3.6) and normal control group. The average level of rMCP-1mRNA of gastric antrum significantly increased in depressed model group (0.759 ? 0.357 vs 0.476 ? 0.029, P < 0.01) or saline + depressed model group (0.781 ? 0.451 vs 0.476 ? 0.029, P < 0.01 ), while no significant difference was found between fluoxetine + normal control group(0.460 ? 0.027) or fluoxetine + depressed model group (0.488 ? 0.030) and normal control group. Fluoxetine showed partial inhibitive effects on mast cell ultrastructural alterations and de-regulated rMCP-1 expression in gastric antrum of the depressed rat model. These findings will conduce to understand that chronic heterotypic stress may induce the immune responses in gastric mucosa. Treatment with fluoxetine can ameliorate pathological changes in gastric antrum of depressed rat model, suggesting that SSRIs are an effective therapeutic agent for some gastroduodenal diseases caused by psychological factors.

Oh deja vu! When I had my crash last November, the same thing happened to me. Everything tasted funny! It all had this crazy aftertaste, especially sweet things. I was so nauseated that I couldn't eat and I had alternating bowel issues. I ran a fever every night too...weird.

O,K, I wonder what made them think of that!? If you use too much, do you blow bubbles?

Hooray for her! She did a very nice job too!

Eeewww! Not sure I'd snort that! Hotter water always does it for me. You could do a stage 2 Neti and pull it out of your sinuses that way, you can look it up or PM me. (It's not pleasant the first couple times you do it, and I don't want to get too graphic ) I have a friend who has a chronic fungal infection of his sinuses AND he's allergic to that strain of fungus (serious double whammy!) and he Neti's with a fungicide! His doc knows and does not approve, but can offer no other alternative! I hope you feel better soon. Jennifer

Before I had my prescription for Inderal, I had a tremor specialist (neurologist) actually suggest that I try drinking to control the tremor! I tried it once so that I could get some work done. Let me tell you, quality control goes down hill fast after the third shot of Tequila! It did help the tremor though, just not as much as the Inderal!

There is a diet specifically made for migraineurs, avoiding certain foods as a whole and limiting others. I knew several people who tried it with great success, but it is VERY limiting. The interesting thing is that is almost exactly the same diet they "treat" you with for histadelia (too much body histamine.) Your salmon problem is probably too much histamine in "older" fish, it is common misdiagnosis for anaphylactic reactions to seafood. As it sits, the tissues break down, releasing histamine into the meat. I wish they would get this thing figured out. It seems like all, or at least most, of the pieces of the puzzle are there but nobody is looking at it as a whole. Each center concentrates on their own little piece and won't back up to see the pattern (or there are just several puzzles there with similar looking pictures )

Oh Ami, what a magnificently adventurous life you lead! I can see the storybook illustrations of poor little Gilbert being poked by pixies in white coats with old, old cameras and the head leprechaun! If only your life were so delightful as the images in my head! I am sorry, my dear! Father Christmas obviously did not take Gilbert back with him. I hope your next adventure to doctor-land is more productive, it's a shame that you have to fork over the "pot o' gold," for them to tell you what you already know! Be well, and keep your chin up! Your attitude is amazing...as fresh as a wind in the willows. Jennifer

Eosinophilic esophagitis (EE) is a disease characterized by swelling of the esophagus (the part of the body connecting the throat and the stomach) caused by an allergic white blood cell, the eosinophil. Symptoms of EE can range from severe heartburn, difficulty swallowing, food impaction in the esophagus, nausea, vomiting and weight loss. There appears to be some age-related differences in symptoms, with younger children having more symptoms of weight loss, and older children and adults having food impaction and difficulty swallowing. It is not exactly clear what causes EE, although this disease may be related to other allergic diseases, particularly asthma. People with EE frequently have a personal or family history of other allergic diseases such as hay fever, food allergy and asthma. Recently, there have been studies showing an association between food and environmental allergies and EE. How is EE Diagnosed? The diagnosis of EE is generally made by performing a biopsy of the esophagus, with evidence of eosinophils infiltrating the esophageal tissue. A biopsy is performed via endoscopy (a camera inserted into the esophagus), usually by a gastroenterologist. There are many other diseases that can cause eosinophils in the tissue of the esophagus, including gastroesopheal reflux disease (GERD), parasitic infections, fungal infections, inflammatory bowel disease, certain cancers, recurrent vomiting, and others. These diseases need to be ruled out before EE can be diagnosed. Once EE is diagnosed, an allergist will typically perform extensive allergy testing, including looking for food allergies and environmental allergies, such as those listed above. Eosinophilic Enteropathy By Daniel More, MD, About.com While this one does not directly address your son's dx, I am betting that allergies/MCAD does play an enormous part. The esophagus is very rich in mast cells and any trigger for degranulation is going to wreak havoc! Unfortunately, severe allergies and MCAD are so intertwined that it could be impossible to separate the two unless there is one specific allergen and your son reacts to ONLY that. (there is another article in the Mast Cell articles post about mast cell degranulation of the esophagus causing non-cardiac chest pain) Several esophageal pathologies are associated with an increased number of mast cells in the esophageal wall. We addressed the hypothesis that activation of esophageal mast cells leads to an increase in the excitability of local sensory C fibers. Guinea pigs were actively sensitized to ovalbumin. The mast cells in the esophagus were selectively activated ex vivo by superfusion with ovalbumin. Action potential discharge in guinea pig vagal nodose esophageal C-fiber nerve endings was monitored in the isolated (ex vivo) vagally innervated esophagus by extracellular recordings. Ovalbumin activated esophageal mast cells, leading to the rapid release of approximately 20% of the tissue histamine stores. This was associated with a consistent and significant increase in excitability of the nodose C fibers as reflected in a two- to threefold increase in action potential discharge frequency evoked by mechanical (increases in intraluminal pressure) stimulation. The increase in excitability persisted unchanged for at least 90 min (longest time period tested) after ovalbumin was washed from the tissue. This effect could be prevented by the histamine H1 receptor antagonist pyrilamine, but once the increase in excitability occurred, it persisted in the nominal absence of histamine and could not be reversed even with large concentrations of the histamine receptor antagonist. In conclusion, activation of esophageal mast cells leads to a pronounced and long-lived increase in nociceptive C-fiber excitability such that any sensation or reflex evoked via the vagal nociceptors will likely be enhanced. The effect is initiated by histamine acting via H1 receptor activation and maintained in the absence of the initiating stimulus. 2007: Yu Shaoyong; Kollarik Marian; Ouyang Ann; Myers Allen C; Undem Bradley J Mast cell-mediated long-lasting increases in excitability of vagal C fibers in guinea pig esophagus. American journal of physiology. Gastrointestinal and liver physiology 2007;293(4):G850-6. Good luck!