firewatcher

Try increasing the salt in your Neti-pot till it almost stings (as much as you can stand) and increase the temperature (again, as high as you can stand!) The combination really opened me up and the salt is a natural anti-bacterial! The heat felt so good on my poor sinuses too. If you are only using body temp water, it's not hot enough to open you up. Feel Better!

mkoven, Antibiotics tear me up! Have you tried a neti-pot? They were a major miracle for me and chronic sinus infections! There are several threads on them earlier. Feel better soon! Jennifer

bluesman, If this is causing anxiety, go back on your meds! That is what they are for! Don't worry about telling her about your condition, it will come up. If you have a mutual friend (the nurse who introduced you) she may already know and just not know how to bring it up with you! We all have our "baggage," things that are not ideal that we gloss over or hide. She has three children and I can guarantee that their daddy is a painful subject that she is waiting to "come up." Understand that she is just as vulnerable as you are and she is sweating this like you are even without anxiety issues. The pain of dating after a failed marriage is very raw. You never know when you'll have a gut reaction to something the new guy does that reminds you of "that other guy." Don't feel sorry for her, pity isn't attractive, just be as gentle with her "baggage" as you want her to be with yours. Stop dancing on eggshells, you are both stronger than you think. Hang in there! Happiest of New Years!

John and Candace, Many of us have been where you are now, only we did not have the comfort of having a doctor recognize that there was anything wrong. I know that I have always had my dysautonomia, but my twenties were really good years for me, symptoms wise. Remember, so often this "thing" comes and goes! There will be times when you feel normal again, and times when you crash. Get to know yourself and your limitations, learn about your conditions and this will help you to avoid triggers that make your symptoms worse. You have youth on your side, don't waste it worrying about what's coming (it could be a cure!) Do the best you can, day by day. I know I sound like a preachy "Mama," but I'd really like to be where you are now! Happy and Healthy New Year!

That's funny, I've always had POTS symptoms, but no allergies at all until the episode with my ex's cat! I think that this is why they have been studying all this for so long, it's the chicken and the egg all over again. Maybe I'm just a duck! Quack! (No wait, that was my old doctor, he was the quack...)

Ami, I am so sorry! I had to have all four of my wisdom teeth out. The oral surgeon started working before i was completely under (I am hard to sedate) and then I had three dry sockets! Keep him hydrated and try oragel (topical teething anesthetic for babies) in the meantime. At least they can break the teeth to get them out without yanking. Good luck! I hope your men don't make you crazy! Happy New Year

Yes, I have it too. My neurologist says that it is peripheral neuropathy. I have not found anything that helps, sorry.

Found this one just now: Mast cells and the power of local RAS activation http://ndt.oxfordjournals.org/cgi/content/short/22/1/40 "Stimulation of mast cell degranulation resulted in significant renin-mediated formation of angiotensin I in normal animal hearts. Subsequent local production of angiotensin II elicited norepinephrine release from cardiac sympathetic nerve terminals via the AT1 receptor " Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders http://hyper.ahajournals.org/cgi/content/full/45/3/385 MCA+POTS patients were characterized by episodes of flushing, shortness of breath, headache, lightheadedness, excessive diuresis, and gastrointestinal symptoms such as diarrhea, nausea, and vomiting. Triggering events include long-term standing, exercise, premenstrual cycle, meals, and sexual intercourse. In addition, patients were disabled by orthostatic intolerance and a characteristic hyperadrenergic response to posture, with orthostatic tachycardia (from 79?4 to 114?6 bpm), increased systolic blood pressure on standing (from 117?5 to 126?7 mm Hg versus no change in POTS controls), increased systolic blood pressure at the end of phase II of the Valsalva maneuver (157?12 versus 117?9 in normal controls and 119?7 mm Hg in POTS; P=0.048), and an exaggerated phase IV blood pressure overshoot (50?10 versus 17?3 mm Hg in normal controls; P<0.05). In conclusion, MCA should be considered in patients with POTS presenting with flushing. These patients often present with a typical hyperadrenergic response, but ?-blockers should be used with great caution, if at all, and treatment directed against mast cell mediators may be required. Orthostatic hypertension: when pressor reflexes overcompensate http://www.nature.com/ncpneph/journal/v2/n...cpneph0228.html Interestingly, in this group of patients, the orthostatic hypertension manifested as either a persistent hypertensive response to assumption of an upright posture or as a hypertensive crisis, with BP as high as 240/140, with upright posture. This has not been observed in patients who have POTS but do not have mast-cell activation disorder. Role of Esophageal Mast Cell Activation in Noncardiac Chest Pain (NCCP) http://clinicaltrials.gov/ct2/show/NCT0021...%22&rank=21 Chest pain is a common clinical complaint. About 30% patients with chest pain will have a normal coronary angiogram and are described as having noncardiac chest pain (NCCP). It is estimated that 25% of the population complain of chest pain at some time in their lifetime. The pathogenesis of NCCP is unknown. Esophageal hypersensitivity as a result of inflammation is considered to be an important mechanism in the development of this pain sensation. Little is currently known about the interaction between inflammatory mediators and peripheral afferent nerve terminals in the esophagus. The mast cell is one of the most enriched pro-inflammatory cells in the gastrointestinal tract. Activation of the mucosal mast cell releases a variety of mediators into adjacent tissues. We hypothesize that mediators released by mast cells sensitize esophageal nociceptors and induce pain sensation. results not found yet! Mast Cells Are Essential for Early Onset and Severe Disease in a Murine Model of Multiple Sclerosis http://jem.rupress.org/cgi/content/full/191/5/813 This one has opened a big can of worms implicating mast cells and autoimmunity (unfortunately none of those articles are free on the web) In addition to their well characterized role in allergic inflammation, recent data confirm that mast cells play a more extensive role in a variety of immune responses...These data provide a new mechanism for immune destruction in EAE and indicate that mast cells play a broader role in neurologic inflammation. The earliest article I've found so far on this was from Dr. Robertson (Vandy) from 1988, so I'll look for more...

"Chest pain is a common clinical complaint. About 30% patients with chest pain will have a normal coronary angiogram and are described as having noncardiac chest pain (NCCP). It is estimated that 25% of the population complain of chest pain at some time in their lifetime. The pathogenesis of NCCP is unknown. Esophageal hypersensitivity as a result of inflammation is considered to be an important mechanism in the development of this pain sensation. Little is currently known about the interaction between inflammatory mediators and peripheral afferent nerve terminals in the esophagus. The mast cell is one of the most enriched pro-inflammatory cells in the gastrointestinal tract. Activation of the mucosal mast cell releases a variety of mediators into adjacent tissues. We hypothesize that mediators released by mast cells sensitize esophageal nociceptors and induce pain sensation." Role of Esophageal Mast Cell Activation in Noncardiac Chest Pain (NCCP) 2005 http://clinicaltrials.gov/ct2/show/NCT00219492 I have not checked further into this (final study results,) but it seems to fit some of us!

Flop, "The only time in the last few years when I felt totally "normal" was when taking prednisolone 10mg daily for several months to control my hayfever. (Cardiologist says there is no way that prednisolone would make my POTS symptoms go away but I could stand up in a very hot room for hours without feeling dizzy at all)." If the severity of your POTS symptoms is mediated by your histamine reactions, (or possible autoimmune) then prednisolone would help a good deal. No, it won't help if you ONLY have POTS, but if you had MCAD, and your POTS reactions were triggered by mast cell activation it will help. Take the Mast Cell/Hyperadrenergic POTS article to your cardiologist/POTS doc and ask to give it a whirl! By the way, your BP response (diastolic up to 90 or more) is (by my understanding) indicative of a hyperadrenergic response, your body is desperately trying to compensate to the posture change by constricting everything as tightly as it can! My face, hands and feet (only) were visibly sweating during my orthostatic test at Vandy and my hands were cold! I did not have a TTT, just standing there was enough.

Maxine, I am almost there too! I am so sick of doctors, but the fear of that "unknown endocrine dysfunction" and having two family members die because of the "if we'd only caught it sooner..." excuse have me dragging myself to yet another doctor. I have come to the realization that they aren't really any smarter than I am, they just have a different education (and a lot bigger ego!) I am tired of going through the whole 4 inches of medical file with them and then hearing "I don't know." I am trying to downgrade my medical searching and just live my life as best I can with the symptom control that I have (which is pretty good if I don't push it.) sigh

Cat Lady, How often are you taking the Benadryl after your reactions? My son's allergist and pediatrician have both said that it needs to be given every four hours for 24 hours since the injested allergen has not yet left your system. If you are only taking one dose of benadryl, the rebound ANS reaction might just be the allergic reaction coming back. Or, it could be a rebound of your CNS kicking back in after being slowed down by the benadryl. I notice rebound tachycardia on the second morning of not taking Inderal (I can't take it for 24 hours within getting my allergy shots.)

Hi Flop, It was the nephrologist who originally dxed me with diabetes insipidus due to polyuria and low urine osm. He has said my kidney function was good, but that was at the beginning of all this (about 12 tests and one year ago!) It is the consistently low GFR despite my "dehydration" level (fasting/not fasting) that have me concerned. I have not seen anyone here who has been tested and had results like these. I did not know if this was typical or consistent for hypovolemia, hypoperfusion (reduced blood flow to the kidney due to hyperadrenergic vasoconstriction?), neuropathy, or who knows what! As hard as I have looked, I can't find anything relating it to POTS! All I can figure is that either it has not been studied yet (in the context of POTS) or it is not POTS related.

Just reviewing my labs for my ump-teenth new doctor appointment and a footnote caught my eye: if there is a persistent low GFR then there is Chronic Kidney disease (don't look it up, it's scary!) Well, mine has been "low" for a year and nobody has mentioned it. My creatinine is consistently high and my GFR is <60, usually in the low 50's. Most docs simply look at the levels and go, yup dehydration. The ONLY time it's come back normal was when I was actually overhydrated (serum osm 273)[my blood glucose level was 63 on this occasion] Should I be concerned? Dialysis or kidney transplant are not options that I want to think about! I know I've asked this before, but have ANY of you shown lab results like this: high serum/urine creatinine, low GFR, high hematocrit? Is it a POTS thing that goes along with the hypovolemia or is that "unknown endocrine dysfunction" rearing it's ugly head? Somebody please?!

OK, fourth class down. This really hurts! I started laughing at my poor partner when she looked up and her face was bright red, I said "you finally look like me!" Then my instructor says "NO, her face is red, yours if PURPLE!" Great, like the shaking and fatigue aren't bad enough. Weight-lifting gloves have taken care of the wet handprints and slippery grip, but after the third or fourth rep in each set, I feel pretty close to collapse. Very often I can't finish a set, the muscles just won't "do it" anymore. The instructor is really good about it, but I'm very sure that she's waiting for me to pass out on her. Does anyone else's ears clog when they exert themselves? It's a little like the valsalva except I am still breathing, but the pressure is extreme and apparently I turn a very pretty shade of purple. Just bending over will do this too.

Hooray!!!!!! I really hope they know their stuff and can help you. Good Luck! Jennifer

Flop, from what I've read, if I understand it correctly, MCAD will only happen in hyperadrenergic POTS (look at the reference article earlier in this post.) But this is the first direct reference to this that I have found. Also, if I understand correctly, a normal norepinephrine level on TTT does not mean that you do not have hyperadrenergic POTS. You can have hyperadrenergic POTS with normal or low NE levels, you just over-react or don't clear it from your system (NET deficiency.) My diagnosis was based on my ever increasing BP readings in response to autonomic stressors.

I had birds once, they drove me insane! I have a sleep/circadian rhythm problem and their sweet chirping first thing at the crack of dawn made me want to fry them up for breakfast! Maybe bats?

Jessica, before you get too concerned, transient tachycardia (temporary high heart rate) is a normal response to upright posture, it should slow down within one minute. If her HR remained high, then it would a dysautonomic response. If you are really concerned, do it again with a blood pressure cuff and a HR monitor. Vandy uses this protocol for POTS dx: HR and BP lying down for 15-30 min HR and BP at one minute after standing HR and BP at three minutes standing HR and BP at 5 minutes standing HR and BP at 10 minutes standing Go to the home page for this site and it explains a lot more of the differences, Vanderbilt's site is another one: http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4787

Hi and welcome! If you are not on meds for it, you can sit or squat. The doc that I saw at Vanderbilt suggested that I quickly drink 16 oz. of anything not carbonated. If I don't take my Inderal, my HR is usually 126 to stir my morning coffee...welcome to the club! Go to the homepage of this site and then to "what helps"

My son, who has had two anaphylactic reactions to milk, RAST tested negative to milk. He will develop hives even if his skin touches milk. The allergist gives him a week of steroids before his repeat skin tests, just to slow his reactions.

Cat Lady, I would take the MCAD article with you. I would expect that you will get a POTS flare since skin testing will be a double stressor: it will cause a histamine reaction and it will be "painful" like the cold pressor test. Your symptoms should come back under control once you are back on your usual meds. If you are taking a beta blocker, don't take it the day of the test!!!!!!!!!!!just in case you have a bad allergic reaction. It will interfere with an epi-pen injection. They will have an antihistamine to give you after your test, probably zyrtek. You might get a steroid like prednisone to take for several days after if you have a big reaction (my ragweed prick test became the size of a playing card.) Try not to scratch, it will itch like a fiend! Good luck, and hug your cat for me. Jennifer

I hate to admit it, but my POTS has been better since the dog went to heaven. I can't even wear wool or cashmere, I get hives! Alas, I am very allergic to animal saliva, I blossom into teacup sized hives and my eyes swell shut. I never used to be allergic to animals (I used to sleep with a husky and 4 cats.) Then my ex got demon-spawn cat from h&!! That cat truly hated me: it would attack me every chance it got, then once we got it declawed, it would "hug" my leg or arm and try to bite me! I got sooooo sick from that creature and ever since I have been allergic to animals. Fish just don't have those soft brown eyes that are just happy to see you.

One is a serum tryptase (for mastocytosis) One is a four hour urine collection for methylhistamines (must be after an "episode" or it will be normal!) for MCAD

Yes, the serum tryptase should be low, if it is high, it will be Mastocytosis (which would be even rarer than POTS!) If the methylhistamine levels are high, it means that you had a histamine dump and would indicate MCAD (Julie/Mack's Mom, is this right?) I have not had the methylhistamine done yet, so I'm not sure. What I got off the Mastocytosis site is that MCAD in POTS is not too many mast cells, just an inappropriate overreaction to a stimulus: exercise, emotion, posture change... Good luck and take that article with you! Also, make sure the lab tech knows the proper procedure for processing the lab test (make them look it up!) I had a whole 24 hour urine catch wasted from improper lab handling!