NMPotsie

Ah, good question Batik (sorry, don't know how to do the quote thingy). My cardio really didn't know what to make of it. He was local and not very good. He basically did what you said--actually, the day before my appointment his PA called and said the doctor didn't want to see me as he couldn't help me and he suggested I see a psychiatrist for anxiety. However, when i went to the Mayo clinic my cardio consult was much better. They came up with actual answers, and were surprised that my local doc had blown off a 6 second pause in my heartbeat and several 2-3 second skips. They decided it was probably a testing error, but repeated all the tests because, in their words, it was "anything but normal." My gp just read the report provided by the cardiologist that said it was normal, so he wasn't much help either. The neurologist referred me to cardio because of that report. Still, they couldn't figure out why my heart was doing weird things until the neuro explained it. I guess it depends on the doc. If I were in the same position again I would ask for the entire report, insist my doc review it, and get a second opinion if there was anything on there that looked strange. I have learned to be more assertive now; back then, I just assumed they knew what they were doing all the time.

I just meant there's not a lot of prep involved, it's non-invasive, and usually the doctors will handle these pretty well. It's a procedure they've been doing for a long time. Unlike many of the other things we have to push for, in my experience the heart tests aren't one of them as cardiologists are pretty astute at knowing when/if you need additional testing, etc. for possible heart problems. I totally understand your frustration with the repeated tests not really showing anything. In my case, my Holters did show stuff but none of it was really explainable. The issues weren't consistent. I had all kinds of really weird fits of arrhythmias, brady, tachy, but cardios were not able to explain them. Then, when I saw the neuro, he was like "oh that's because your heart is getting incorrect signals from your brain." So the heart tests were valuable for ruling out things, but not really for diagnosis. Not sure if that makes sense; I've got the brain fog. I am glad my heart is ok, even if weird. This is one case where I didn't want to see anything on the tests. The idea is usually to rule out heart problems if they suspect it's your ANS. I think Valerian is a mild sedative. Many of us are extra sensitive to all kinds of meds, so the Valerian might just really work for you. or, it could be a fluke; my symptoms come and go. I was afraid the TTT wouldn't show anything because I wasn't symptomatic the day I had it, but they keep you on there long enough that it absolutely did. Also, in my case, I was not allowed any meds prior to the tilt.

I recently had an EMG (electromyograph) and nerve conduction study done at Mayo to try to figure out why my thumb has had no feeling for 3 months. I know many of us have nerve issues, and I really wish someone would have warned me about this test. The prep instructions say things like "mild discomfort" and "unpleasant but not painful." This was one of the worst tests I have ever had! I just wanted to share because I made the mistake of driving myself and ended up driving home with one hand because my right arm was completely useless for about 2 hours after, and it ached for days. If you have to have one of these: A.) I am so sorry and B.) have someone drive you. Just wanted to share that because I wish someone had told me.

I have dermo and itchy skin and I couldn't tolerate the stockings. I broke out in hives all over my legs. Many of us start with the 24 hr. holter and then, depending on that, the docs may make a decision to do a longer one or repeat it. In my case, my brady/skipped heartbeats on the 24 hr. made them nervous about wolff-parkinson-white (or however you spell that) so I was given the long-term monitor to ensure that I didn't have this issue. The Holter is actually more sophisticated than the event monitor because it usually monitors your heart with more than just two leads (I've always had four to six) and does so continuously so that they can see everything that is happening for you in a given day. The event monitor requires you to notice something is weird and push the button. I never noticed the brady or the skipped heartbeats, so the event monitor wasn't really helpful for that; I doubt they ever would have found them if I hadn't worn the Holter. I only logged what turned out to be instances of tachy in the 130s+. So a Holter is not inferior; it is a great starting point, and if you need a long term monitor they will probably tell you. Don't worry about this; as far as tests go, these couldn't be easier. It's quite interesting to see all the weird stuff that may be happening with your heart that you don't even notice (though for your sake I hope it's beautiful, normal, and perfect).

Sue I've wondered about this as well; my neck has hurt at the base of my skull since I was dxd, though nothing appears abnormal on testing. It seems like the neck pain has totally emerged with the POTS, and it doesn't have anything to do with the ANS that I know of, so why does it hurt all the time? I wonder also if this is why yoga is helpful for some; it loosens all that up. My dr. recently prescribed massages every two weeks to help with my condition. I don't know if it's related, but I'll take that!

Ashley I have a lot of the same symptoms as you do. Terrible flushing; I go suddenly red in the face/ears very quickly right around the time the world starts spinning and I start sweating. I have hives on and off all the time; they don't stay in any one place too long, but I'm always hivey and itchy somewhere. My temp also runs low, etc. I do have hyper pots, though I started having sudden drops in my bp when I started antihistamines and zantac. Dr.s assume this is reflective of the control of my mast cell degranulation, and the beta blocker then doing what it should--lowering my bp. I tested positive for heat, cold and vibration-induced urticaria (hives), though one ray of sunlight wouldn't give me hives like you. It takes 5 or 10 mins in the heat for hives to develop, and for me it's heat, not sun directly. I have been dxd with hyperpots and probable mcas. If that's helpful.

So sorry, Sheila. I definitely notice worse symptoms when under stress. Everything is exacerbated with stress when you're ill, I think.

I tried various brands but couldn't stand them. They were hot, itchy, and I broke out in hives from wearing them (but my skin is UBER-sensitive). I have talked to people who wear them and they have issues with swelling right above them on the knee high ones, so maybe try the thigh-high first? The most tolerable, and most fashionable, ones I bought came from Rejuvahealth.com. I will try them again in the winter when it cools off here, and these are the ones I will wear.

Whatever you decide, good luck Batik. It sounds like you have it very rough. I'm so sorry. Be careful.

I have pernicious anemia that resulted in severe B12 deficiency. My body makes antiparietal antibodies so I can't absorb it normally. I take a minimum of 5000 mcg every day (sometimes twice a day) and am able to get by without injections. My doctor tests both my levels and my MMA (methylmalonic acid); the MMA is a good test for pre-deficiency (I'd have to google why; I'm just repeating what he told me). I get tested every 2 months, and am usually at about 580.

I've also done lots of these, and long-term event monitors as well. I did not go off of any meds except the xanax; it was not necessary for my treatment so I was advised to avoid both it and sleeping pills. I have a major brady issue so they wanted to see that without the uncessary stuff. I was advised to continue my beta blocker and supplements. I think if they want you off of meds they tell you so long as they know exactly what you are on. This may not be everyone's approach, but after my 3rd or 4th holter I decided to do everything that exacerbates my condition when I had one on so they could see it. I drank a bit of coffee in the a.m., stood up as much as possible, went outside in the heat, and drank some wine at night. They all aggravate my heart (and yes, I paid later). It worked for me; my heart does something really, really wacky when I drink. They finally caught it. Of course, then I was told to NEVER drink, so that's no fun. I'm glad I saw it though, or I would have continued to endanger myself unknowingly.

Not sure if this is useful, but I had some of my allergy tests prior to the labs. I started the urine methlyhistamine right after, as well as some other ones (I can't remember which--prostaglandins, maybe?). They all came out high. The only one I believe I had prior to the allergy test was the tryptase. I downloaded the mayo clinic app for ipad and it gave me comparisons for those tests I had had previously but didn't realize they were significant for mcad (the tryptase, for example). My numbers were a lot higher this time for those tests that were repeated (for example, last time my prostaglandins were 725; this time they were nearly double that). The allergist wanted to see those numbers after the test because it would reflect what happens when my allergies act up. It might be worth a try to have your allergies "stimulated" through a test and then get those labs. However, as Issie said, you can still have MCAd and not show it on any tests. They are looking for residue of a reaction and that stuff clears your body pretty quickly; the tests aren't for the disorder, they are for evidence of the disorder. Your history can tell them a lot, though. I took pics of my rashes with me and had several reported flushing episodes witnessed by docs; all this seemed to convince them even before the tests. I have no idea if this is useful; I may be a weirdo.

Yogini: sheetali is the cooling breath where you roll your tongue and breath through it like a straw. It requires holding the breath and taking full, deep breaths. Both of these aggravate my dizziness. As long as I breath "normally" (controlled, not too deep, don't hold it) I do well.

Yoga works wonders for me! I feel so much better when I do it. I just avoid the breathing exercises beyond moving with your breath. Anything else makes me super dizzy, especially Sheetali. It's great because many of the poses are upside down, which you have to do cautiously and slowly, but that extra bit of blood to the brain is like crack for me. I'm addicted.

My doctor prescribed low dose propranolol but told me to be sure and eat 10g of salt and 3L of fluid (half with electrolytes) daily to counteract the blood-pressure lowering effects of the beta blocker. It doesn't always work, so he's talking about adding midodrine to my meds to further counter the low bp. I'm hanging out in the 70/50 range a lot of days. As far as the fatigue, that totally went away for me after the first couple of weeks. It usually does for many of us. About a month in I didn't even notice it. It helps the fatigue because your heart isn't working so hard just to stand up. That rapid heartbeat, along with the physical symptoms of excessive NE, etc., costs your body a lot of energy. While I am more mellow since starting the bb, I am not nearly as tired.

Issie and I have the same doc, I think, and he didn't put me on aspirin, so there must be differences in our cases. That's why it's important to get a doc to fine tune the regimen I guess. MRSA entails 3 months of antibiotics, which make me feel soooooo bad and aggravate my pots so much. I'm allergic to half of them, and the other half don't work. It's miserable. I'm becoming a pro, though. Was on antibiotics for an entire year in 2009 for systemic MRSA. We are trying aggressive topical antibiotic treatments in the hopes that it will kill it so I don't have to take more antibiotics. It's a bit like being a leper, and once you get it it never wants to go away. Thanks for the well-wishes.

I was put on one mcad protocol a couple of weeks ago that included zyrtec TID zantac BID, and fluticasone. Yesterday, my neuro called me and said they're switching all the meds based on my test results (didn't say which tests, but the urine methlyhistamine came in while he was out of town and was high so I'm guessing that one). Now it's allegra and pepcid BID, Dymista, keotifin eye drops prn, and one other prescription med (I think). They're mailing the info so I'll know when I get it. I am feeling tons better since starting the protocol they initially gave me. I get to start trying (very small dose) allergy shots in a month to help keep my symptoms down (I'm highly allergic to trees and weeds of every kind in my area). I'm also sleeping with an air purifier, which is proposed to help the nighttime symptoms. I have slowly been able to stand longer and longer; I stood and watched a bonfire for about 5 minutes without feeling wobbly, which is a miracle! Unfortunately, doc just confirmed another MRSA infection (I had hoped this would help straighten up my immune system, which hates trees but LOVES staph! I think it throws a cocktail party when it shows up! LOL) I'm glad you're feeling better and hope you continue on your path.

My doc got a hold of this at my insistence through a colleague; I didn't join the study. I tried it. Didn't quit my meds as exercise can trigger flares for me. Could not get my hr up high enough (the meds, I guess). Also, my doctor investigated and believes the premise on which it is based is faulty (something about our hearts being too small). That being said, exercise has helped me as much as anything, so I highly recommend any kind of exercise.

Thanks emy. That helps to know I wasn't the only one who couldn't get going.

I never had an anxiety disorder or feelings of anxiety prior to pots. I was dxd with anxiety by a bad doctor when I was referred to a psychiatrist for my hives at 20. A good allergist later dxd me with eczema, after I had been on paxil for 6 months (did nothing for the hives). I've always endured stress pretty well; I used to be a competitive athlete and it just pushed me to be better in that and in school. Now, a fight with my friends will set off a flare that lasts a week. I can't cope with any stress. My bp goes crazy and I am out of commission for several days afterward. I had a hostile dinner with some girlfriends not so long ago and had to go to the ER because my bp was so high. I am held hostage by my need to avoid any and all stressful activities. It's one of the worst psychological effects of the disorder for me, and I've had to divorce a lot of friends because I just can't handle their drama.

micheller I had similar symptoms and it was attributed to an overactive sympathetic nervous system at night. You could also see my muscles twitching and spasming right through my skin (like restless leg syndrome times a thousand). My doc added xanax at night and it helped calm down a lot of that. My meds weren't quite doing it. I was trying to find the article, but can't, but I read something about pooling causing nausea. I want to say it's because of blood pressing on nerves but am not sure if that's correct. This is probably why binders/stockings help it, and makes sense with increased tachy because pooling causes tachy as your body tries to compensate for the lack of blood where it needs to go. If you can (or haven't already tried it) pumpkin I would try the hose/binder and see if they help. I would check your bp a few times when this happens as well and see what it's doing. If it's high,I would get my standing/supine cats checked if possible because you may be getting hyper symptoms. It doesn't have to get crazy high, just significantly higher than it usually is (over 10 d/s I think, though usually much more exaggerated). Interesting side note: doc suggested the night time thing may in my case be triggered by mcad because I sleep with my bedroom window open at night and doc said pollen comes in and may trigger release of histamines. My allergies are always worse at night. I was advised to get an air purifier for my bedroom and close the window. Not sure if it has helped since they also added a ton of new meds and I am better, but it's a suggestion that's easy to try.

You have to buy your shoes a half size bigger for work because at the end of the day your feet are purple and swollen from pooling.

Thanks Potluck. That makes sense; I'm sure it was the propranolol. I was trying to follow the exercise protocol someone gave my doctor that said that I had to get my hr up pretty high for the exercise to help my pots. I have abandoned said protocol for fear of having a stroke while exercising because my bp was climbing very high but hr wasn't doing a darned thing. My doctors have assured me my heart is normal in size (structurally perfect were their words) so I should just exercise and get up a good sweat and be good with that. I was advised to ignore my hr and just try to get my 30-45 mins a day in. I am finding more and more that monitoring anything but my bp just drives me crazy. I put my pulse ox in the bottom drawer and haven't taken it out for a couple of months. I am much happier because of it.

Nowwhat that's an interesting idea. I've never heard that, but it makes some sense considering that we clearly aren't getting enough blood to our brains/lungs. I have undergone multiple lung function tests because of my SOB complaints and they are all fine to excellent. Recently had one checking for asthma and I had to blow into that mouth piece really hard and keep blowing for 6 seconds and I swear nothing was coming out and I could hear myself forcing it, yet the doctor was like "oh that's great; everything looks great." Huh? I've been in the ER, couldn't breathe, begging for nebulizer and they are like "your o2 sats are 100 (or 99/98)." I often feel like I have an ace bandage around my chest, yet everything on the pulse ox looks normal unless I raise my arm; then it drops to 92 or even lower sometimes (I've seen 86) within seconds. I don't know if this is normal, but if raising my arm lowers it that quickly and that much then I'm guessing my brain (which is always raised unless I'm flat) is getting around the same reading. Like Elena, though, I have to ask the questions and worry about it. I think this is the thing: if the doctors are wrong, and I die, the consequences for them are much less severe than they are for me. I am much more invested in my living than they are, so I will push and question until I get an answer that makes sense. I don't often just settle for "well, that's a pots thing" because there should be a reason; they may not know exactly what causes pots, but they know what it does to our bodies to some extent, and I want to know that too. Or, I want to badger them enough that they say "hey, we should investigate this and find out the cause so they'll leave us alone." Not one doctor I've seen cares about the brady issue, though. They all agree it's normal, most potsies experience it, and many live long lives in spite of it. So I try to ignore it and get some sleep. Edited to add: I've theorized that since most of us are very active/athletic prior to our diagnosis we had outstanding lungs, and dysauto has caused them to become "normal", but we aren't used to normal so we feel we are strangling. Maybe this is what the average joe lives with, so they just don't think anything of it? Probably not a good working theory, but at least it's a theory.

I get down in the mid to high 30s at night. My holters and overnight pulse ox measured 38 and 42, but I've seen 36 on my pulse ox. I also have sustained runs during the day in the 40s (before I started bbs). Everything checks out with my heart. Dr. Goodman says it's not uncommon for people with pots, so I shouldn't worry. Sometimes it's hard, though.