NMPotsie

Like Brethor, I had them before. I started getting the heat ones when I was 15. The cold issues are weird; I don't get the hives, but my skin gets red from exposure to very cold air/ac and will peel off for days, like a sunburn. It's awful. In my case it doesn't have anything to do with change in temperature. I get them if it's hot, even if I stay hot, and vice-versa with the cold ones. Doctors are also pursuing mast-cell in my case, so it may be related to that. A lady on a pots support group told me about the home tests. For the cold, you put an icecube on your skin for 10 minutes or so and then see if you get the welts. For the heat one, I took one of those little pyrex bowls and put warm water in it and held it on my skin for 15 minutes (they use a test-tube in the allergists office). They are looking for welts or redness that does not subside pretty rapidly. I took a pic of my skin 3 hours after the heat one and it was still really, really, red. I have the same issue if I take a hot bath (which I can't do bc of pots, but used to love). I stay red for several hours after the bath, and get small itchy hives all over. You can google "heat/cold urticaria test" and sort of figure it out from there. I just got squeezed in to the allergist who confirmed the diagnosis, even though I've suffered for years no one tied it to the heat or listened to me when I told them it was heat-related. Doctors!

I voted that I fluctuate. I gain weight and then have a hyper surge and lose about 10 lbs. in a week from nausea and associated GI symptoms. I haven't gained an ounce on the beta blocker, which I thought I might, but have noticed that without the severe surges causing these periods of weight loss my weight has stayed more constant so I have been able to control it more myself. I have gained about 20 lbs, overall, since I got POTS but when I exercise it comes off as it should. I'm 5'10 so that's not a lot of weight on my frame, but it's more than I'm comfortable gaining. My husband swears 10 lbs of it is water from the salt because he only notices it in my fingers and my face. Someone told me the other day "you look like you've lost weight but your face is fat." Gee, thanks, I think. My clothes all still fit the same since before, so it's just weird.

This article is really interesting. Thanks for posting! I was on another thread posting about how my hormones have become much lower since getting POTS (estradiol and progesterone, specifically) and then I come read this and am like "oh yeah, I have that!" I also have really low cholesterol. It was 114 the last time I had it checked. My doctor attributed it to the malabsorption, saying "you don't absorb the good so why would you absorb the bad?" but I'm wondering if it has something more to do with dysauto (it's always been low, like 130-140, but has plummeted since POTS). He told me to eat more butter. I tell people I have dietary restrictions and that they include butter, salt, and chocolate. They're like "how do I get on that diet?" LOL Anyway this gave me a lot of insight and things to think about.

I had similar issues as clair with endometriosis and had 2 ablations so that I would be free of the uterine lining. I don't have periods at all, and it has helped my pots a lot even though I have my ovaries and hormones. I don't get the fatigue nearly as bad, and for whatever reason I don't get monthly pain and cramping. I have a friend who had a total hysterectomy and she got worse with her POTS afterward. They put her on HRT, which helped her moods/mental status but aggravated her POTS even further. It took awhile for her to experiment with the doctor to find the lowest possible doses that balance out her moods without making her bedridden with POTS. I wish she would get on here and tell you about it! she's resistant. I also have very low estradiol naturally since I got POTS, and my doc theorizes that's why I don't have the monthly issues associated with hormones that a lot of women do. I wonder if that plays a role in the hormonal issues that aggravate POTS?

I tried it for about 2 weeks. Didn't help my symptoms at all. Anytime I eat a lot of carbs I am more symptomatic, but gluten doesn't seem to make a difference for me.

I get these as well. I did an at-home test and took pictures for my doctor. He sent me to an allergist to confirm. In my case antihistamines didn't do much to get rid of the hives once they came up so I was prescribed topical corticosteroids, which helped tremendously. Also, when they are really bad, they give me one of those 14-day courses of prednisone. The heat ones are the worst for me, and while the antihistamines do help prevent them from occurring they didn't touch the hives that had already emerged.

peregrine I have no basis for saying this other than my own experience with POTS, but I don't think it means anything at all related to your pooling because the pooling is what causes the urinary issues (or so my doctor said). I think this disorder is weird, and we all experience it differently, so just because it doesn't help your other symptoms doesn't mean you don't pool in your abdomen and it doesn't help you somewhat since it altered your urinary pattern. I find the binder much more useful than the stockings for relieving my symptoms even though I clearly pool in my feet (you can see it). I'm still dizzy with stockings, but I also swell up, so they just don't work as well for me. BTW, I feel like I have to pee almost every time I stand up for even a little bit, and the binder allows me to be comfortable going to the bathroom only every hour or so. If you're drinking a lot and only going every 6 hrs. I would check with the doc before I wore it because I wouldn't want to get a UTI. I have no idea if those things are connected, so I welcome anyone to correct me if I'm wrong, but I thought if you wait too long to go to the bathroom you can get UTIs.

My doctors have encouraged me to get to 150-155, and I find it next to impossible. I am on propranolol 10mg TID but generally work out in the a.m. and p.m. before I have taken my meds (it seems to wear off in 4 -6 hours). I guess the issue is less that it's not "high enough" and more that it only gets up 10-15 bpm on exertion. I used to go from 60 to 160 when I exercised, before I had POTS.

Kelly you are so right. It's no small thing to feel like you look good. The stockings are also so hot and itchy, and no matter how high they go I swell up above them. I already have a pretty big chest; I don't need a second layer going on under my clothes.

I noticed a lot of you say you have issues exercising because your hr gets high. I kind of have the opposite issue. Since I started beta blockers I have a very hard time getting my hr up during exercise. Just standing up it will go to 130, but I can't get it to go much past 140-145 even after rowing or using the elliptical for 40 minutes. Anyone else experience this, or know why?

Adjustingmysails: thanks for clarifying that. I do experience syncope, but only after standing for extended periods of time, and my doctor had attributed that to hypotension, but when I read your post saying hypers do not faint from low bp, I was confused. I was labeled hyper due to high standing catecholamine levels, high bp on standing, hyperadrenergic surges (based on report of symptoms and one urinary cat test) and my valsalva response, so I just need clarification on that. I think I understand where you are coming from. I recently saw a neuro who wouldn't treat me for POTS because I don't have hypotension. He said I didn't have POTS because my bp goes high, rather than low, even though I showed him an article that said "in the absence of hypotension" and explained that OH is considered a different (though often associated) diagnosis. This type of thinking prevents people like me from getting proper care.

adjustingmysails: Can you please explain why my bp and cats all rise on tilt, and then I have a sudden drop in BP? My bp gets really high and then suddenly sort of bottoms out.

Naomi this is the one I use with ice packs: http://shop.nextrevolutionmedical.com/8-Abdominal-Binder-AB8.htm The Veronique ones are cooler and a bit more lightweight than spanx if you're looking for a suit-type thing. They also have more compression: http://shop.nextrevolutionmedical.com/8-Abdominal-Binder-AB8.htm

I get severe catecholamine surges and mine cause a huge increase in bp, shakiness, chills, sweating, horrific nausea, and a terrible headache at the end. I cannot sit or lay down; I pace around the house, my pupils get huge, and I feel like I'm dying. I definitely get a tight feeling in my chest. I also flush, which can be associated with MCAS but isn't always (sometimes it's just the dilation of the vessels, according to the doctor). Basically, imagine how you feel right after something startles you (like a near-miss car accident) and multiply that by 1000 for whatever duration you experience the surge. The headache and nausea last for days, and I am completely exhausted afterward (not during). Oddly, it doesn't speed my heartrate up that much more than normal, though I do get palpitations while it's happening. The big indicator for me is the bp rise and the feeling of being unable to sit still, which is a common excessive NE symptom, I was told.

And yes, it does help me with the bloating and the nauseau. When I take it off, though, I get like a rush of blood there that's weird and causes passing nausea.

I have to stand up quite a bit at work and wouldn't be able to do it without abdominal compression. It really helps my dizziness, though I didn't notice the GI side effects. I did notice the urinary ones, though, for sure! I think it's because the blood isn't pooling in that area and making it feel like you have to go to the bathroom even when you really don't need to that much. I have one that is medical and you can put icepacks in it if you want. I like it for when I have breaks bc it really cools my body. The only spanx thing that has worked for me is the full body-suit that goes from thighs to under the bra. The midriff one doesn't have enough compression for me, I don't think.

That's odd, jangle, because I go to Dr. G and I wasn't given either of those (one was due to my hypertension with flares, but don't know which). We discussed beta blockers (all types), ssris, snris, xanax/lorazapam, and various other treatments. I was also given lots of suggestions for lifestyle/diet modifications (other than salts) and told what testing I should pursue when I went home to try and get my symptoms under better control. Maybe the office is only familiar with those two meds?

My longest flare was also my first; it was about 8 months, and I was a total wreck. Not bedridden, but close to it; mentally, I was exhausted and I seriously thought I would rather just go to sleep and not wake up many days. However, I gradually got much better even before meds and a diagnosis. I'm so sorry you're having this; my heart goes out to you. It will get better, I'm sure of it!

Like puppylove, salads make me sick. I tried to eat one a couple of weeks ago and it felt like it was stuck in my throat, chest, and stomach. I used to eat them all the time, and now even looking at one makes me nauseous. My body does NOT appreciate lettuce. Dairy is awful, as well. I marked other because I get severely dizzy, even sitting down, when I experience delayed emptying. I feel like the room is spinning, and nothing helps except putting my arms over my head, which makes the pots worse. I can tell the difference between the pots dizziness and the stomach dizziness, though.

Naomi: my understanding is the same as yours; that in phase 4, which is after completing the valsalva, the overshoot indicates the your bp responds a bit higher than normal, while the decline means it drops a bit lower than normal. I wondered about the neuropathy as well because the QSART was normal (actually, high compared to the ranges listed on the results) in that I did sweat but my doctor says I have symptoms of neuropathy. I don't understand neuropathy in the context of the tests, though, so I'm baffled. I thought pots WAS neuropathy. Not sure how low your bp is, but mine always hangs out around 90/60 supine, and drops into the 80s/40s on occasion. Actually, the propranolol doesn't lower it much because it's such a low dose and because I am very careful to do the salt and fluid loading. Dr. G told me explicitly that if I don't do the salt my bp will drop, then rebound hypertension will follow, and I would be worse than I was before. I am careful to follow his directions to the letter, and so far, it has worked pretty well for me. The big benefit for me has been the drop in intensity of headaches, which I had nearly every day, and less fatigue because my heart isn't beating so fast.

I go to Mayo Scottsdale and have found it very helpful. You get so much done so quickly and they are proactive in trying to figure out what is wrong with you. Many of the people I have talked to have associated issues that need to be addressed by other types of doctors than neuros and cardios (ie GI, immunology, etc.) and you can get a lot of that in while you are there. The big reason I like it is because the people are so kind and so caring. That is a rare commodity in the medical field, at least where I live. I fainted at the desk after a blood draw and they were so sweet to me. I said "I'm here because I can't stand in line, and you're making me stand in line" and they were like "well you should have told us you can't stand in line!" I never had to stand in line the rest of the time I was there. I was there for a week and underwent testing pretty much all day from 6 am to 5 or 6 pm. I had numerous blood and urine labs, the full neuro exams for dysautonomia (ttt, qsart, valsalva, plasma cats, etc.), and lots of cardio. There were complications with the plasma cat test because absolutely no blood would come out of my arm. They tried everything, and finally had to cheat the test with a bp cuff after getting permission from the doctor. All of my schedule was thrown out of wack because it took 2.5 hours, but when I walked out they gave me a new schedule with everything rescheduled so I wasn't prevented from getting the tests I needed. Some people have said they think it's expensive, as well, but compared to what I was paying locally it was actually much cheaper. My MRI was like $3k, and here it was $5500, so overall the bill hurt a lot less. I spent less at Mayo for useful answers than what I had spent locally for a handful of xanax prescriptions. I was given an extensive consult with the neuro and cardiologist, med recommendations/prescriptions, an exercise program, and suggested lifestyle changes. I was, most importantly, given a pretty clear explanation of what was going on, why it was happening, and what I could expect my prognosis to be. It was a bit painful at that point, but the doctor was honest and still kind. I'm going back for my 6 month followup in September, and told the appointment lady I was having trouble getting the recommended allergy panel here for my random hives/anaphylaxis, so she booked me there. How easy is that? The funny thing is, she had to put me in for "red, itchy eyes" because everything else required dermatology first (I've already seen multiple derms, to no avail). The point is, they figure it out. Also, everything with Mayo is online so you have access to all your records and can print all your results as needed. That is great when you see a lot of doctors, and saves all the copying expenses/trouble. Also, I've found that tests from there carry a lot more weight with local doctors, generally (not all), than other tests. It is hard to find followup care, but I think that's true of anyone who lives in an area without a good doctor and who has to travel to find one. Also, Dr. Goodman's nurse is fantastic about answering any and all phone calls, even if they're like "my thumb is at a 90 degree angle; can this be a pots thing?" Good luck with your decision.

Naomi mine showed a decline in phase 2 as well, but it was mild, while the phase 4 was exaggerated; however, my results say "suggestive of a hyperadrenergic state" and "no evidence of autonomic neuropathy" (based on my qsart results, I thought), so maybe it isn't part of the hyper label and I misunderstood. I was given a lot of info in a short period of time. I found this summary, which is a study of this use of propranolol on the valsalva. The full-text would be better but I haven't had time to look. I think it's interesting in this article that they talk about headaches being relieved with propranolol because of this bp overshoot. http://www.springerlink.com/content/92182g8vq1241162/

Peregrine: I don't really understand it, but my test says "exaggerated Phase IV overshoot." My understanding of this, which may be incorrect, is that my bp rose much higher than normal after I finished breathing. This is one of the reasons I was prescribed propanolol, because it helps with this (though why, I have no idea; I'm guessing excess ne?). This is something I plan to ask more about but didn't really understand at the time I was being diagnosed.

Kelly I have the same understanding. My plasma NE levels at Mayo were about 900 and I was not very symptomatic, but I had previously had a urinary catecholamine test after a flushing episode and they were very high (somewhere in the 1800s, I think, but don't have a copy of the report). My bp went higher and higher on tilt, and then dropped suddenly, and then sort of skyrocketed. When I have the surges my doctor says my cats are probably very high and bp gets up to 180/160 area, but on the tilt my bp only got up in the 140s or so, even lower on one tilt (122/89), so I don't get the impression that these things are set. I think they do fluctuate, and often randomly. The important thing about the hyper component, from what I was told, is that it rules out certain meds that could cause complications (so, in my case, stuff that would raise my bp to dangerously high levels). Or, maybe doesn't rule them out, but guides them to a starting point. The valsalva response is also part of that diagnosis at Mayo, and mine was abnormal. When taking my symptoms (especially the surges), my ttt, and my valsalva response all into account, the hyper component was applied. Still, Goodman suggested caffeine (a stimulant) might help. It nearly killed me; I had the worst surge I've ever had. You would think, as a "hyper" patient, they wouldn't suggest caffeine, but they seem to just try stuff out and see what sticks.

McBlonde I had the exact same experience. I was given two bags and went to the bathroom about 5 times throughout the infusion; it seemed I was literally peeing it out at the same rate it was coming in. Maybe that's why it didn't last very long for me, because it sounds like it lasts a long time for most people. Nothing seems to want to stay in my system very long. Even my cholesterol is super low (too low) and the doctor says it's because I'm not absorbing well, good or bad.