NMPotsie

I discussed this concern with my doc (addiction). He said at this dosage it shouldn't be a big problem (like you said, if you up it all the time it's a bigger deal). I was on xanax for 2 years prior to my diagnosis and when I stopped it to go to Mayo I did notice that I was grouchy and more irritable, but it was not super-bad and lasted only a week. My dr. is like yours, brethor; he says people can be dependent on beta blockers, too, but if the benefits outweigh the drawbacks and it helps me cope I should take it. The only reason I don't is because I am so out of it if I take it in the a.m.

It really helps me sleep, especially because I get very jerky, twitchy legs at night. I took Ambien and ate ice-cream and pretzel sandwiches and walked around the street in my sleep, and Lunesta broke me out in hives and ramble nonsensically. Xanax helps me get calm at night and doesn't make me do weird noctural things.

I take xanax and beta blockers. Mostly I take xanax for flares. My doc recommended .5 2xday on top of the beta blocker, but I can't do it I'm like a zombie. It does help control catecholamines so if I have a flare I chew one and take an extra bb and it seems to work better than just the bb.

Wow. Some of you have some very busy lives, illness and all. I'm impressed.

I get up about 8 and take my bb and nexium with a heavily salted poweraid or coconut water. Then I lay in bed until the meds kick in. Get up about 9 and get ready for work. Go in at 10 and teach my classes. Come home about 1 and take a nap (a must) and eat lunch, and take more meds. Go back and teach 4-5:30, come home and do email, prep for the next day, etc. (usually on computer until about 7 pm). I only work M-W, so Thursdays and Fridays are reserved for research, projects, and meetings, which I go in for if I have to and stay home if possible. Drink a lot during the day, drive to work (only about 6 minutes away), and watch tv/rest most of the evening. I do 45 minutes on my rower, yoga if I can, and walk the dogs if it's not too hot (usually about 10 pm because this is when I feel my best). I try to exercise as much as humanly possible, but some days it just doesn't happen. Go to bed around midnight, after more pills.

I am lucky because I have a very supportive husband and a live-in housekeeper who does all chores, laundry, cooking, etc. If I didn't have her nothing would get done because I don't have enough left in me to do any of that. My husband will actually yell at me if he "catches" me doing dishes or laundry. I never appreciated him so much as when I got sick. I've been infertile my whole life, so kids weren't a big issue for me (and he already had 2 from his first marriage) but I definitely don't know how some of you do it with kids. My hat is off to you!

I have hyper pots and work full-time as a college professor. Thank goodness for technology, as I can teach 50% of my load online if I need to. Currently I am only in class for 2.5 hrs a day M-W, with Thursday and Friday "off". I still have to attend meetings and work on research projects, but most of that i can handle sitting down or even from home (except the meetings). My supervisors have been incredibly understanding so far, allowing me time off for treatments and appointments. Still, I am currently going through our university's process for being declared disabled and getting work accommodations under the ADA so that I am legally protected should administration, or their attitudes, change.

I highly recommend asking for ADA protection if you can get it. This prevents your employer from using absences and illness to fire you. I have to miss a week at a time to go to Mayo Clinic, and technically since I'm faculty I don't get sick days, so my supervisors could very well hold this against me if they were so inclined. With the ADA, I can specify time off for treatment and as long as they agree (and it's reasonable) they can't use this later to discipline me. I'm also being given a temperature-controlled classroom so that I can keep it much cooler than other rooms, and am allowed to defer my classtime to online work if I am especially symptomatic. This was way more than I asked for initially, and more than I hoped for. Once the ADA is invoked, institutions (especially public ones) are very concerned about providing accommodations. Assuming everything goes through, which I've been assured it will, I will even have the option of 100% online teaching if I should become bedridden.

I used to teach 8th grade. There's no way in **** I could still work if I did that. My heart goes out to those of you who do. The only reason I'm still working at all is for the health insurance. I would have quit two years ago if I didn't need the insurance.

Yogini if there is a maternity shop in your area, or a medical supply store, they often have the more "medical" compression and you can at least take them out and see how they feel/fit. I went to a medical supply store and did this with my first one. You can also get a high compression one at Walgreens, though I found those to be VERY hot.

If I have one glass of wine my resting hr will jump from the 50s to 115 plus, with standing in the 160s. I like alcohol, so sometimes it's worth it if I'm not too symptomatic in other ways. I never understand why a depressant will make my hr jump so high. When I was doing my long-term event monitor I had two glasses of wine, was symptomatic, and called it in. They called me back within hours and said "don't drink alcohol, period." I've never had it explained to me, but when I got the records all of the upside down Vs on the ECG strip were suddenly right-side up, dipping way below the center line of the strip like no other ECG I've ever seen.

Sad thing is, I still drink a glass once in awhile. I just feel so good, no matter what weird stuff my heart is doing. My doctor says I'm begging for a heart attack when I drink. Consider me informed.

This is a great topic! I bump into walls all day long and swing my arms in a way that I crash my hands into things constantly; they're always bruised from hitting doorknobs and other objects. When people are too close I can't breathe and something weird happens wih my vision; I get tunnel vision and can't really "see" their faces, like I can't focus or something. I have no problem with driving other than when I'm stopped I feel like I'm still moving (have to mash the brakes to make sure I'm not). Anytime I sit at a computer for long periods of time my head feels like it's being pulled backward. This was one of the first symptoms I reported, and not surprisingly I was referred to a psychiatrist immediately.

I was reviewing my initial medical records from pots the other day and I mentioned this and "jello head" (ie brain fog), along with the sensation that my head is a balloon floating off into space. Sheesh, no wonder they thought I was nuts. LOL

I love my binders. It's the only way I can do my job (teach) without passing out. I use various ones, depending on my needs and symptoms. I also have acid reflux, but they don't bother it. The spanx ones definitely don't do it for me on most days. Here are the ones I prefer:

This one is good when it's hot because it comes with ice packs, and they're not too hard to conceal under clothes:

http://shop.nextrevolutionmedical.com/8-Abdominal-Binder-AB8.htm

This one is also good when it's hot but is more concealable and breathes better than others I've tried (size down when you order; I'm normally a medium and it was way too big; small is better though I would order an XS if they had it)

http://www.amazon.com/Gabrialla-Breathable-Elastic-Abdominal-Binder/dp/B000WFW7W2

And this one is great for days when I'm not super-symptomatic. I bought mine at Dillards. It has never rolled up on me, which most do (size up if you're borderline on this because it's pretty tight; also, to avoid making it a two-man job, I keep it snapped shut and just shimmy into it)

http://www.dillards.com/product/Cabernet-Waist-Cincher_301_-1_301_501069283?df=02115729_zi_cupid_nude

Hope this helps. I find these to be heaven-sent.

Edited to add: give yourself awhile to get used to them. They are pretty uncomfortable at first and made me feel like I couldn't breathe, but it helped to lay down after I put it on and breathe awhile and then get up and go. Now I'm only uncomfortable when I remove them because I can literally feel the blood rushing to that area. Bonus: if you leave them on when you eat you feel fuller faster. Maybe that's not helpful for some of you, but I've lost about 4 lbs from this alone.

Good question, Katybug. I notice if I'm flat I don't have that problem, but I will get very tachy if I'm bent at the waist in any way during sex, orgasm or not. Also, according to several websites, adrenaline is released prior to orgasm, so maybe you're feeling the effects of that? Here's a basic explanation: http://www.cerebromente.org.br/n03/mente/orgasm_i.htm

I think oxytocin is calming; its the cuddle hormone, so I wouldn't think it would cause tachy. Adrenaline defintely would, though. This is a good question. Once when I was having a surge I tried to have sex thinking it would relax me. Totally opposite effect! I was more of a mess afterward.

I also noticed that since I started beta blockers I have a much more difficult time reaching orgasm. Maybe it's because they're quashing the effects of adrenaline?

This is very helpful, Serena. Thanks for the explanation.

Shana

My bp looks very similar to this, only it drops after I stand awhile. My doctor says it's a baroreflex problem, and that my body pumps out too much norepi to compensate for the low bp and then it goes really high. At some point, I stop responding to the norepi and it tanks again. It's weird. My heartrate does not correlate at all with how I feel, but when my bp is high I also feel at my worst. I shiver, am freezing, get hypoglycemic and am very dizzy.

Last week, my bp suddenly tanked. It ran 80/50 for 4 days straight. The highest reading I got was 88/59. I didn't feel too bad (dizzy, but what else is new?), but I was very tired and every time I sat down or even leaned on my arm it or my feet would turn red/purple and fill with blood. I upped my salt to 15g per doctor's orders, and it has been better. Tonight it was 90/67.

I am on 10mg propranolol 3xday. I take them and drive, etc. I have no problems with functioning on them, though these bouts of low bp are probably related to them. They are much less miserable than the high bp, so I'll take them for now.

The beta blocker does lower my hr, but I still show potsie on the tests when on it. Instead of going from 60-146+, my hr goes 56-125. It's still pots, just not the very, very high pulse. My bp also climbs on standing, but now it's like 90/60 to 114/92 instead of 100/60 to 150/110. So yeah, it changes the values, but my tests still look like pots.

If it were me, I wouldn't take beta blockers until I have a doctor to explain to me how to regulate bp by adjusting salt/fluids. If I just took the bb, I would have ultra low bp. Because my bp fluctuates so much, I have to monitor and make changes suggested by my doctor to ensure that I maintain some balance and don't tip too far in either direction.

Try doing some resistance band exercises. You can do them laying down and then sitting up when you are able, but you don't have to stand. I would think even sitting with your legs down would help build some tone in your vessels, but I don't really know. It seems like anytime your body has to counteract gravity that would help build tolerance. My heart goes out to you. I'm so sorry you're in this position.

My worst times are in the morning and after dinner. My best time is about 11a-2p and 9p-12a. I feel awful before 10a and from about 7-9p.

I'm not sure about your food sensitivities, but two things cause tachy for me that I am certain of: MSG and sulfites (ie wine). My doctor says neither are true allergies, but they do cause tachy that remains even when I'm laying down. I'm rarely tachy laying down, so that's a sign that there's a reaction.

Like Alex mentioned, though, I also just get random bouts of tachy, even at rest. Usually, it's accompanied by a feeling that my heart is beating very hard (pounding). The force is so great that my teeth actually knock together. My doctor has no explanation for it, other than "yeah, that's your POTS."

I wear a binder that has ice packs in it, and I really appreciate it in the summer. I'm not sure this woud give enough compression for me but I wouldn't be afraid to try it.

I am a lot less symptomatic in the winter than the summer, but being indoors with heaters and the noticeable changes in pressure bother me. I am dizzy outside in the summer, dizzy inside in the winter. I also tend to have more hyper surges in the winter. I'm not sure why, but I think every time I get even a little virus my immune system goes crazy and my bp shoots up. This is just my theory.

I don't know about the blues, but it could definitely cause the fatigue you described. Have you adjusted the dose? I was on a higher dose and it just crushed me. I was crying randomly and spontaneously, and really exhausted. I take a lower dose and spread it out over the day, when I need it most, so that it's in my system but not at high strength. If my bp is low, I only take 1/2 the bb after dinner to prevent a food coma.

I had a similar reaction as you, McBlonde, to clonidine. No matter how low the dose, I felt like dirt and got rebound hypertension. It just wasn't the right med for me.

Millerla I don't buy the stuff about not taking naps. "Regular people", with "regular sleep cycles" shouldn't take naps because it disturbs the quality of their sleep. We are not regular people! I have tried to adhere to the going to bed, getting up on a regular schedule, and not napping protocol and I am exhausted and more likely to have hyper flares. There are days when things aren't going well for me, with crazy low/high bp, postprandial dizziness/fatigue, etc. and the ONLY thing that helps me is to just go to sleep. I think of it as a reset button, like you have on electronics. I can nap for 2 hours, go to bed that night and sleep like a corpse.

We know what works for us and what helps us feel better. I say nap if you need to. It's bad enough to have this disorder, nonetheless to fight what your body is demanding to heal yourself.

thanks Issie. That's great to know! I am allergic to sulfa drugs (recent, post POTS thing) and wine makes me feel horrible. The doctor suggested Sulfites may be the cause. I had no idea lettuce has sulfites. Any raw veggies you listed bug me as well, but cooked I do okay with.

Lisa: yes, I have horrible brain fog at times. I think most of us do. I will walk into a room and not remember why I went in. I lose my phone about 10 times a day, and the other day I put the remote in the freezer. It's horrible. It sounds funny, but some days I just lose my stuff and cry for like 20 minutes over it. It's also very hard to explain to other people. I just say "I'm stupid" and they shut up. I'm not stupid, so I'm cool with that.

I also taste blood in my mouth. I have tried to explain this to the doctors but they look at me like I'm crazy. It happens at least once or twice a week, out of nowhere. Potluck, any ideas?

Squirrel is right; ultrasound is the way to go. I've also had good luck drinking lots of water, staying warm (wear a jacket), and I ask for pediatric nurses if an anesthesiologist isn't handy. They are used to getting needles into kids who have small veins and squirm, so they don't usually start unless they know they have a vein they can use (this keeps you from getting multiple sticks). I tend to have better luck in the back of my hand/side of my wrist. They don't have to use your arms only, either. I've had them in my ankles. They can put a bp cuff above the tourniquet, which helps. They had **** getting into my veins at Mayo!

I am kind of mean, but I tell them "you get one shot at this and then I want someone else who can get it done." I have hyper surges, and repeated sticks can cause a surge for me. I'm not worried about making friends at that point.

Eating is the thing I hate to do most since POTS. I just feel terrible, especially if the food is hot. I am eating soup out of cans, unheated, because it's the only way I can tolerate it. Smaller meals, fewer carbs, and laying down after meals helps, but I am dizzy, nauseous, and generally terrible-feeling after I eat. I also really, really hate lettuce now. It just grosses me out.

I'm on low dose propranolol (10mg TID) and love it. It controls my hyper surges pretty well and the tachycardia. Like Libby, bbs actually lessened my fatigue because my heart isn't working so hard just standing up. I noticed fatigue for the couple of weeks and then stabilized and I don't notice it at all anymore. I also had a lot of crazy heart issues and it has really leveled these out. I don't feel like there's a bird living in my chest anymore. The only issue it has exacerbated is my bradycardia, but it's not a lot worse than it's always been. It's also caused some wheezing at night with allergy issues.

McBlonde I was told that they cause fatigue because they block ne from its receptors. NE causes your vessels to constrict, your heart to beat faster, and your bp to rise in response to demands on your body (ie when you stand up). Since these things aren't happening you're getting less oxygen to your brain and lungs and more pooling (your vessels aren't working as effectively to move blood up), so you are more tired and experience SOB. This is why you generally salt and fluid load while on them, to counteract the "looser" vessels. Don't quote me on that; I just asked my doc and this was what he said.

I get both nausea and very SOB after eating. My doctor posited that it's from too much blood being diverted to the abdomen to process the food. The blood causes the nausea and the lack of blood causes the SOB because you're not getting enough oxygen to your lungs. I try to eat smaller meals (he suggested 6-8 per day) and avoid white flour and complex carbs that take more work to process. The smaller meals makes a noticeable difference.

AZ: yeah, they say to do it on the forearm, underneath (the area where you have no/very little hair). I took pictures because my skin isnt always predictable either. I was allergic to bleached sheets for about 3 months, and suddenly they don't bother me! Mine is so finicky I thought I better document prior to going to the doc. It showed up easily at the allergist, though. If you take antihistamines, don't take them prior to the test. They say 8 days, but I only waited 3, and it worked.