SpinnyC

With Mast cell Activation Syndrome, as Issie said, you can have a normal level of tryptase if the tests are done when you aren't having a significant multi system allergic reaction. That's one of the things that makes Mcas different from Mastocytosis. With Masto you have more mast cells than you should and they build up in places like bone marrow which is why they do a biopsy. All those extra cells drive tryptase up. With Mast cell activation you typically have the normal amounts of cells but they degranulate "inappropriately" or too easily. Which is why it's often described as having "jumpy" or "misbehaving" mast cells. During a reaction your tryptase will go up for a few hours, it's that measurement (among other clinical findings like symptoms and responding to H1 and H2 treatment) which can indicate MCAS. It's helpful to have a baseline tryptase to compare to a reaction level tryptase. But from what I've been told, by more than one doctor, and from what I've read having a normal tryptase when not having a reaction doesn't rule out Mcas. I've also been told tryptase is typically highest when blood pressure is low and a reaction is happening.

Everyone of us is different so I think the best thing to do is discuss the plan with your doctors and dentist. Maybe if you feel like everyone is prepared you will feel more comfortable. I had my wisdom teeth out with Pots. At first I wanted to be knocked out but the dentist said no- not with my dizziness and other symptoms. So we planned to do it with novocain and laughing gas. But laughing gas made me feel way too much like fainting, so they stopped it and went to plan c. Which was only novocain and not doing them all at once- only taking out 1 or 2 at a time whatever I could handle. The procedure itself wasn't too bad... not fun my any means but quicker than I expected and I had no pain during and very little pain after. Dealing with the pots symptoms, the histamine release, and my jaw being slightly dislocated (because my joints are so loose) afterwards were worse than any pain. As soon as I stood up after the procedure I almost passed out and then came close to vomiting. Same thing happened the second time I went in. But because they knew my history they were ready for something weird both times. They laid me back down, gave me oxygen, took my vitals ect. The days of recovery weren't bad because of pain it was the Pots symptoms. I just took it easy, tried keep myself from feeling too much pain by using the painkillers they gave me, and staying on top of the icing schedule (that way the pain wouldn't add to the Pots symptoms), monitored my vitals, and dealt with the dizziness and nausea as best I could. Good Luck!

Good point about the PCP. Recently I've been thinking I might (unfortunately) have to find a new one. I've always liked my PCP, her approach and the way she thinks about all the regular problems that come up, is great. But when it comes to this more specialized chronic stuff it seems like she is very hands off and out of the loop. Plus add to it that it seems she now has have a very limited schedule. So I keep having to see different doctors when I go in for all these little weird complications I get from having these three conditions. I can't remember the last time I actually saw my real doctor and it's starting to bug me because I feel like she has no idea what's happening. Admittedly though- I'm so sick of seeing doctors that I think son some level I might have let the situation continue as long as it has just so I don't have to see one more doctor on a regular basis.

I might be joining the triple diagnosis club. I know there are others here who have, or are suspected to have, all three and am wondering a few things... 1. Who becomes the primary doctor to manage all this for you? Genetics, Neuro, Cardio, Allergy? Or is it all just fractured care that you pull together yourself? 2. Does anyone know of studies or doctors that are looking into all three conditions as a whole? 3. Do you also have symptoms similar to Erythromelalgia or Raynauds?

I also wonder what the difference between Benign Joint Hypermobility and EDS are. And frustratingly the answer seems to generally depend if you're talking to a Rheumatologist or a Geneticist.

Thanks Aimes! I appreciate you responding with your experience. So interesting how we can get these crazy- yet opposite reactions. I haven't dealt with bradycardia much either, usually my heart rate goes sky high in response to anything/everything. And just when I come to expect that, something new and different .

Well I've checked my heart rate while coughing again today. I don't feel as many symptoms while coughing because I'm lest congested than I am at night and the monitor doesn't show a drop the way it did last night. Does anyone have any ideas on that- or a similar experience? I assume it has to do vasovagal response.

So I've got some respiratory congestion- likely seasonal allergies starting with a bang. I went to the doctor and they said no infection and they increased asthma medications to help deal with the breathing difficulties. I cough more at night than I do during the day and have noticed the past few nights that I feel really odd- sort of light headed and forceful heart beats when I really try to cough. I checked my heart rate and not coughing it's around 92, but when I'm actively coughing (or just after) it drops to the high 40's, low 50's. The monitor is the kind that goes on your finger so I don't think the change is caused by faulty readings during the motion of coughing. Does anyone know if this is a normal physiological response? Or maybe a Pots thing? My Pots tests showed less cardiac variability than normal during deep breathing tests... and since when I'm coughing I'm starting out by taking a deep breath I would have expected my heart rate not to change too much.

LOL... all great ideas Enid! I knew when I put that bit in about gatorade someone would definitely mention Nuun . I haven't tried it yet... but would like to. Cheers!

Sorry you have to be here- but welcome! Let's see- three things I wish I'd known when I was first diagnosed: 1) Always tell a doctor/nurse/emt/dentist the full name of what you have not just the acronym. Give a short description of what the condition is and how it specifically effects you. So for Pots don't just say "I have Pots" say- I have Postural Orthostatic Tachycardia Syndrome, which is s form of dysautonomia. My autonomic system doesn't function like it should and then tell them your personal symptoms. Because when a medical professional nods knowingly after you tell them you have Pots, there's a good chance they don't actually know what you are talking about. And even if they have heard of it they might make wrong assumptions about what Pots is- like if you have Pots you must have low blood pressure and faint- which isn't always the case. 2) The app that turns the iphone's flash into a heart rate monitor is awesome and very handy. 3) Trying to find a root cause is important. Even though you might not find it.

I'd think you should ask your doctor for more specifics on the amount of salt and liquids they'd like you to have. Doctors recommend different levels for different people, and it can be a pretty big variable some people are down in the 3 grams of salt per day range and some people are up at the 10mg of salt end. *Normal* daily salt levels for a non potsy are somewhere in the 1.5 or less grams per day I think.

I'd been eating organic, local foods and very little dairy and meat before getting Pots. Ironically after being diagnosed my diet got worse because of all the salt and elimination diets I tried. I feel like my food is more processed and more limited than it was before. I'm getting back into eating a better more well rounded diet, and it will probably go more towards the china study and forks over knives style of eating than I was before because I really like the results of the research.

Love all of these idea!

I posted a new "If there was a Pots Town" post in the chit chat forum... if anyone else wants to add their two cents in about what a Pots Utopia would be like

This is fun little spin-off that came from a post I started in the Dysautonomia Discussion forum. The scenario is a group of specialists have opened up a Pots practice and we've all moved there to benefit from the coordinated care, and have inadvertently created a Pots Town. This is what I imagine it would be like. There would always be a shortage on mobility scooters in stores.There would be so many handicapped parking spaces some of them wouldn't actually be close to the door anymore.Buildings would have a lot more chairs and recliners strewn aboutAll the floors would be carpets with lots of padding (good for fainting)Gym memberships could be priced by the minute instead of the monthYou could stop and get an IV practically anywhereSalt would probably cost a lot (due to supply and demand)The closest ER would actually know the heck Pots is!And the place would practically be a ghost town first thing in the morning and on hot days It would have a really fantastic shuttle service Or maybe it would be the perfect place to test out the automated cars that drive themselves!Gatorade would probably build their first ever barThere would be compression garment boutiques and outlet storesDelivery services would be a huge industryAnd doctors would definitely make house calls!And mydoggielovesme2 replied in my original post saying "we would all have bumper cars, so we all could still drive. " Please add your own thoughts to the mix- it's really kinda fun once you start thinking about a Pots Utopia!

Thanks boymommy3 and mydoggielovesme the whole Pots Town thing has been popping into my thoughts now and again and came up with a few more things to add. At first I was going to say it would have a really fantastic shuttle service but I love the bumper car idea too funny! Or maybe it would be the perfect place to test out the automated cars that drive themselves! Gatorade would probably build their first ever bar There would be compression garment boutiques and outlet stores Delivery services would be a huge industry And doctors would definitely make house calls!

Yes, good days can definitely have their own struggles. And it's exactly the types of things you just mentioned- having errands and tasks that are backed up from all the days of not feeling good. Plus then there's the struggle between doing the things I need to do and doing some thing I'd like to do. Sometimes it's a little discouraging because it seems like I hardly ever get to the things I'd like to do because I know I have such limited "good time" that I feel irresponsible if I brush off what I need to do for what I'd like to do. Personally though I think the hardest days are the "in between days". It's easy on the days I feel dreadful to not be "productive" because I struggle so much with the basics. And although on really good days I feel like I have more to do than I can possible accomplish it still feels good to just feel that good. But the the days when I don't feel good and everything I accomplish comes at a huge physical price are the days I hate the most. I feel like I should be pushing more if I rest, but when I'm doing stuff it's a constant battle with my symptoms.

LOL I had to laugh because I know that look too! And have had the "googled it" experience. But have to say I've ended up loving any doctor that's willing to go the extra mile and look up something that they aren't familiar about and come back with a more educated stance. If they don't know it but are willing to remember/admit that they don't already know everything in their respective field is someone I want to keep around!

I'm really sorry you are having such difficulties with the scooter. Pots just plain ***** sometimes! I hope tomorrow is better.

Lol well at least it makes me feel better to know I'm not alone . I honestly think my doctors mean well (because the ones I've run into that just want to disregard what's happening or brush me off have already been relieved of their duties). I really believe they send me to those other specialists because they want to try and give me the best care possible. I think the problem is a combination of what some of you have said here- specialists that are too specialized, symptoms covering so many areas of the body, not enough knowledge about the condition. It's just so frustrating from a patient perspective to be tossed back and forth and to have doctors openly disagreeing and disregarding what another doctor has said. It doesn't boost my confidence in a doctor if I'm sitting in from of him and he almost laughs at the opinion of another doctor I already respect. ARGH! I feel like they should all be talking to each other and as a team decide on what to do. Boymommy3 I LOVE LOVE LOVE your idea about someone putting together a practice with all the various specialist who could work as a team. We'd probably all move there ASAP... and that got me thinking we'd have a Pots Town LOL. If there was a Pots Town this is what I imagine it would be like... There would always be a shortage on mobility scooters in stores. There would be so many handicapped parking spaces some of them wouldn't actually be close to the door anymore. Buildings would have a lot more chairs and recliners strewn about All the floors would be carpets with lots of padding (good for fainting) Gym memberships could be priced by the minute instead of the month You could stop and get an IV practically anywhere Salt would probably cost a lot (due to supply and demand) The closest ER would actually know the heck Pots is! And the place would practically be a ghost town first thing in the morning and on hot days

Have you been on any new medications or higher doses recently? If so it could be a side effect. Sometimes a problem that seems totally unrelated to a medication is actually a side effect.

Lately I've felt more like a ping pong ball than a patient. As time has gone by each one of my specialist has recommended I add another type of specialist i.e. the cardiologist thinks I also need a neurologist, the nuro thinks I also need a gastroenterologist, ext. So now I have this whole team of various specialists but all they do is disagree with each other. They disagree on treatment plans, medicines, potential causes of my Pots. And my favorite thing is when one specialist says the results of a test suggest a problem in another speciality and tell me to make an appointment with that doctor. But when I do the other doctor completely dismisses what the first doctor said and acts like it's the most ludicrous thing they've ever heard . I'm tired of being batted back and forth between doctors. And very tired of acting like the messenger in a bag game of telephone. Anyone else wish there was some sort of Uber Specialist... or a magical medical office where you could see all your specialists at the same time during one big super appointment.

I had a hard time picking an answer for the first one. It's definitely chronic in the sense that symptoms are always there and effect what I can do but at the same time the intensity waxes and wanes.

I think with most insurances (especially government run plans) you can apply for a variance. I think you usually need one of your current doctors to write a request to your insurance stating that your condition (or potential condition) isn't something that can easily be treated (or diagnosed) just anywhere and they they think you need to be seen at a particular clinic or by a certain doctor with expertise in this field. I don't know how easy or hard the requests are to get approved but might be something to at least try.

Rama it's very interesting that it's a common finding in Pots/Dysautonomia since autoimmune conditions are mentioned as one of the potential causes for Pots. Do the patients you're in contact with seem develop other autoimmune symptoms or have any of them been diagnosed with other autoimmune conditions instead of Lupus? Are there any theories about why there would be low positives among this group? I know a certain segment of the population will have a positive ANA and not have any symptoms of an underlying condition. And I've also read that disruption of the autonomic system stemming from an autoimmune condition is possible but a poorly researched area of Rheumatology. Seems to me that would leave Pots patients between a rock and a hard place if ANA comes back positive.