NMPotsie

That's a good idea, Issie. I didn't think about additives. I will check on everything you suggested. Am back at the nutritionist tomorrow.

When you lay on the floor of your office so much that your coworkers give you a floor pillow for secret santa (and you actually really, really appreciate it!)

I was put on CoQ10 for 2 reasons, according to my doctor: it's a good antioxidant and may be beneficial for both heart conditions and alzheimers/parkinsons bc it scavenges free radicals (there are studies, but I haven't looked them up). Also, I'm on beta blockers and they may cause CoQ10 deficiency. No idea about the others. I'm very sensitive to it; when I take 200 it causes marked hypotension, so I'm on 100. Weird; my dr. says he's never seen a reaction like that.

I had a bad flare when I was tachy/dizzy anytime I wasn't completely flat. I was extremely nauseous and vomiting, and had very high bp. It was attributed to the hyperadrenergia because it was all the time I was upright (not within a period of time after eating, or other markers). Zofran helped stop the vomiting, but it took several weeks before I was functional and not nauseous anytime I moved.

That's great. I've had overnight pulse ox monitoring but no sleep study, as I'm terrified and can't sleep in strange places. My hubby says I also "whistle" at night. Had my lungs checked backwards and forwards, and no problems. I'm always exhausted, though, and sometimes wake up gasping, which doc attributed to bradycardia. I may give this a try. Thanks for sharing.

It squeezes your midsection so that the blood doesn't settle there. Without the blood pressing on the bladder you don't tend to feel like you need to go to the bathroom as often. Here is an example: http://www.amazon.com/Gabrialla-Breathable-Elastic-Abdominal-Binder/dp/B000WFT3II You can get salt tabs otc. Here are some from amazon: http://www.amazon.com/Sod-Chlor-Tabs-Gm-100/dp/B000GCN130 The thermotabs are buffered and are supposed to be easier on your stomach, but they all bother my stomach. I stick to chicken broth and camelbak tabs (410 mg of sodium you can just drop in a water bottle, and flavored). I use two tabs at a time for 820 mg/bottle.

My husband went from 72-80 and had almost no change in bp, even after 10 minutes. Just normal fluctuations. He is in pretty good shape, but he smokes. We did sitting to standing bc the doc said the effort of going from laying to standing can exaggerate the response (on a ttt you don't use effort to get vertical). If I go from sitting to standing I go 55 or so to 110+ pretty quickly.

I took Nyquil every night to sleep for about a year.

My resting pulse is very low (50-56) and on my tilt at 10 mins I only went to 99 from 52 (evenutally climbing to 135). The way my dr. explained it to me is this: Basically, normal people have a rise in hr (be it 10 or even 20 bpm) when they first stand up but they stabilize pretty quickly and then it goes back down to maybe 10 or less above resting. Potsie hearts just keep going up and up and up because our bodies aren't moving blood where it needs to be so our hearts have to work harder and harder to counteract the gravity that's pulling our blood away from our hearts and brains. For some of us, our ANS overreacts to this and pumps out too much adrenaline to compensate and our bp goes up and we get the hyper symptoms. For me, I get hyper (high bp) following a sudden drop in bp. So my tilt goes from 90/60 to 100/82 to 122/89 to 65/44 and then suddenly 145/98 (and it kept climbing). A TTT will get false-positive results more often than a standing test (there is research to back this), so both are useful. My hr jumped from 55 to 95 on standing test in the neuro's office, which wasn't as dramatic but both hr and bp climbed. If you have both climbing and not stabilizing, and you are symptomatic, I would think pots is likely and a second opinion necessary.

Thank you, Issie, for posting this and translating it. I'm not a dumb girl but this one was like latin to me. Aye! Thanks for making it clear. I'm glad for the "geeky scientist types."

I was told the same thing. Because I have surges that result in pretty severe high bp florinef isn't a treatment option for me. But everyone is different with meds, so maybe it's something about our cases that are different from others. I absolutely cannot tolerate the compression stockings. They're too hot and they exacerbate my skin issues (hives). Normally, though, I tolerate the binder pretty well. It's uncomfortable as all get out at first but once you get used to it you can tell a big difference in the way you feel (well, I did). At my last visit Dr. Goodman suggested I try "runners socks" because they breathe better than the stockings. Haven't checked into this yet but I will soon. Can't even tell you what they are right now.

leydengs they are putting me on the "mayo cocktail" for mcas. So far it consists of 3 zyrtec/day, 4 sprays of nasal fluticasone, a saline rinse (like a neti pot) and "something for your gut" like Zantac (I'm waiting for the doc to call me back on that; should be by Tuesday). It's about controlling the histamines, both H1 and H2 so that's why the zyrtec/zantac combo. I was already taking a similar treatment but with only one zyrtec/zantac and I believe it helped. As soon as I got off my meds to prep for the testing at Mayo I had some serious reactions. The white stuff is a pigment issue and nothing to worry about. I have "scars" from when I had severe eczema at 15, and they are still all white and haven't restored their color. Be careful with the fungal meds; I was told initially I had this and they had me apply lotrimin directly on my eczema. It burned my skin severely, so badly that it was "weeping" through my clothes. The burns itched, I scratched, and I ended up with a nasty staph infection on my skin. Very, very terrible. Staph on our skin (those with atopic dermatitis) is very common and you have to watch or it will get bad. I've had MRSA 3 times in 2 years. I use mupirocin/bactroban anytime I get any sort of hives/itching. For my eczema, this is what works: antihistamines, washing with Eucerin calming body wash (no soap!), a coating of Eucerin cream (the stuff that is like crisco, not the lotion), bactroban prn, and a course of oral prednisone when really bad. Prednisone is often the only thing that will get a flare under control for me, which stinks because the side effects since I got Pots are awful. Hope this helps.

This sounds very much like a mast-cell issue. I have many of the same symptoms (particularly the temp sensitivity and dermatographia), including eczema since I was 15, and was told these are classic signs.

My ears ring and I often wake up with severe pain in my right ear in the morning. I also have a lot of ear drainage. My doctors seem to think that it's allergy or mast-cell related; it has to do with pressure in the sinuses pressing on the eustacian (spelling?) tube. I was told to use a neil-med saline irrigation twice a day, about 20 minutes before instilling 2 sprays of nasal fluticasone, along with the antihistamines they have put me on. I can't tell you that it will work since it was just prescribed for me, but I specifically asked about the ringing and the pressure so I thought it might help you. Feel better.

Jennij I was having the same issue until I started wearing an abdominal binder. It keeps the blood from pooling in that area and makes it easier to drink the water and not go to the bathroom every few minutes. I have the same issue with saline infusions. I have already gone to the bathroom 10 times before they get two bags in me, so they really don't stick around that long. That's probably why they only last a day or so for me.

Like Kimbell, I say "doing better" if it's someone who knew me when I was really, really sick with pots. Otherwise, I just say "okay." Some people will ask "why just okay?" and then I'll expand a bit, but others will say "great" and I know they just want to move on. There are days at work when I feel like something the dog dragged in, and I will say "terrible...I'm sick" because I don't have the energy to give them what they want. Mostly, though, people are distracted by their own problems so I don't burden them with mine as well. I will tell my bosses when I'm feeling ill because it often means they will let me go home, but only when I'm really, really bad. Additionally, my coworkers often find me lying on the floor of my office (or in severe cases, theirs) so I can't help but enter into a discussion about it. The worse part of this is the ones who go home and look up other stuff I might have because they think if I'm taking meds and I'm not better then it's because the drs. don't know what's wrong. It's sweet of them to care, but I've been diagnosed with Wolf-Parkinson-White (or whatever that heart thing is) more times than I care to mention.

Oh, okay. No, I didn't have that. I just explained my symptoms and history and Dr. Rank went right to mast cells as the probable cause. I have a history of atopic dermatitis since I was 15, which he said was common with this issue. Additionally, I get random anaphylaxis that isn't clearly tied to any particular allergen. I had 3 ER visits/records in which a cause couldn't be pinpointed, so this was also a clue for him I guess. Both he and my neuro said it makes sense considering my flares, bloodwork, and symptoms. They only ordered blood and urine tests, and even then said the tests may be inconclusive because it's very hard to identify.

I asked about that, Issie, because bbs work for me. The doctors said everyone is different and react differently to meds and that I can have mast cell issues and still tolerate bbs. It may be that my symptoms are exacerbated by the bb (for example, I seem to now have mild asthma with the addition of the bb) but I tolerate it much better than I did anything else, including clonidine. I get low bp at night so he cut the dosage to 5 mg at night and we're going to try that for awhile. Also, I'm still waiting for results (this was in another post) so I'm not saying I have mast cell issues for sure, just that the doctors agree that it looks like I do. Trial and error, they both said, is the way to go. I'm not going to give up the propranolol unless I have to because it has worked really well for me.

Batik sorry I didn't see this and respond earlier; I missed it somehow. I think you're right about reporting how you feel to the doctor. I often say I feel okay but mean "in comparison to the feeling like I'm about to drop dead like a few hours ago." I never feel okay, but I have a tendency to tell the doctor that I do when it's not horrible. Just fyi, my recent visit led to the conclusion that I have a mast cell issue and the theory is that by controlling that we can control the surges and then I can be put on midodrine in addition to propranolol to deal with the low bp. Interestingly, I brought up my brady (severe at times) and Dr. Goodman said it's just a normal part of the condition and I needn't worry. He also put me on xanax at bedtime to deal with restless legs (all over restlessness, really) and said it won't lower my heart any more so not to worry. That made me feel better.

So sorry you are going through this, Naomi. I have had many days where I felt I was absolutely going to die and that they had missed something. I tried to do research to figure it out and the stupid internet always diagnosis me with cancer, which just adds to the fear. Like others I notice that when my immune system is fighting something I become much more symptomatic, with all kinds of things I don't normally have when I'm not ill. I can tell from my pots symptoms that I'm sick, and I go in complaining and they do a cbc and sure enough my white count is elevated. I don't want to be an alarmist, but some of the symptoms you mentioned would concern me about MS. If it were me, I would ask for an MRI if you haven't had one recently just to rule it out. I'm sure you are "fine" as far as you can be and are probably just experiencing pots weirdness, but some of those symptoms would concern me in that regard because they don't sound like "normal" pots symptoms (of course, there's really no such thing so...). Just my 2 cents, for peace of mind.

What's a BMB? Sorry, I'm unfamiliar with that term.

Just got back from Mayo Scottsdale and saw an allergist there, Dr. Rank. He's new to AZ but was at Rochester prior to that. Anyway, he is an awesome doctor. I described the issues I was having and the first thing he does is start drawing a picture and says "this is a mast cell. Let me explain what I think is going on..." He ordered tryptase, IgE (both high, though tryptase only slightly), and a bunch of other tests that i'm still waiting for the results of, but between him and Dr. Goodman they decided I likely have Mast cell disorder and said they would treat it as such because the tests aren't very useful unless you catch your body after an episode (pretty quickly). Goodman was very receptive and explained the issue further. They also said the high bp episodes may be triggered by the mast cells, so treating it will hopefully get rid of them so that he can treat me for the low bp that has been a huge problem lately. They are also hopeful that the infections I've had are attributable to this issue and will subside once I am on treatment. Apparently mast cells can actually worsen the immune system's response to bacterial infections. I was diagnosed with heat, cold, and vibration-induced urticaria, eczema (common for mc issues), and was allergic to everything they put on me in skin tests. I am awaiting the treatment plan after the tests are all back. He is also going to try me on allergy shots for some of my worst allergens and see how they go (we'll stop if I get anaphylactic). Anyway, just wanted to share with anyone who goes to Mayo AZ that Dr. Rank is awesome and if you are concerned about mast cells it's worth a visit with him. If nothing else, he can help with allergies.

Batik I called my GP this morning and told him. He asked how I felt and then said "well, tell Dr. Goodman when you go to Mayo and see what he says." I don't see him until the 25th, and at this rate I'm getting a little nervous to wait that long. My doctor admittedly doesn't know much about POTS so he just sort of waits to see what they say at Mayo. Issie I had the same reaction to clonidine, but haven't noticed rebound hyper yet. I'm nervous I'm going to, though. How long before you got the rebound hyper? I'm terrified of a surge, so I'd like to avoid this.

I had to stop my allergy meds for tests at the end of the month and already feel the effects! Our weird afternoon storms/humidity are also killing me. I can't wait for fall!

I have hyper pots with surges of very high bp. Am on propranolol 10 mg 3xday, which controls them pretty well. My last surge was in August and my bp was 150/110, which is high but better than 180/160. Anyway, since then, it has progressively gotten lower and lower after dinner. It was in the 80/50 range for a couple of weeks, and tonight 67/41. I feel worse when it's high but when it was super low tonight I started feeling pretty shaky. Anyway, does anyone else get this yo-yo bp? If so, what were you advised to do? So far, I've only been advised to up my salt to 15g (3 weeks ago, and it's just getting lower). I'm afraid to stop/reduce the beta because I feel so bad with the surges, so I wondered if anyone else had this experience. Also, when should I worry about the bp? My doctor just told me not to drive. Thanks!