peregrine

My eyes get very sore over the course of a day - they unfocus really easily, and it takes some actual muscular effort to refocus (they eventually do on their own, but it's still somewhat painful). As I type at the end of a day, they are sore, but no headache. I hadn't noticed the soreness before you mentioned it (whoo other chronic pain), but now that it's come up I definitely feel it. Pupillary dysfunction is one of my main symptoms, so I'm not *too* surprised...

I've only tried two-three so far (if the Cymbalta counts, although it does make it worse not better). Atenolol thus far is the hands down winner; my tachycardia is waaay down (although that's not the primary issue for me based on the fact that diltiazem slowed it but otherwise did nothing for the other symptoms) and I've been able to stand longer (security lines at airports, cooking dinner, washing dishes, doing the cat box) than before. Boyfriend concurs; he's very much a fan. Doesn't do jack for the spaciness while walking or the eye blurring and brain fog, and actually makes me way more fatigued, but otherwise a big win.

I get this from time to time, where I just want to eat constantly, or feel like I'm starving even though I just ate (does sound a bit less severe than yours, but the symptom sounds the same). I always thought it couldn't be due to my guts moving more slowly - wouldn't I feel full longer then? - but JennaC's explanation does make some good sense. Any chance you can keep healthy high bulk low calorie snacks around? Things like carrot sticks, or salads, hot tea (to warm you up without giving you calories), soup, etc? Does sucking on a piece of hard candy constantly keep it at bay?

Serbo, that sounds awfully like what I experience when I walk from place to place, although mine is closer to depersonalization - I don't feel like I'm in my body. Stops when I sit down. The reason it concerns me so much is that I don't notice things like cars, which can be dangerous. It's worse if I'm particularly low energy (e.g. I didn't sleep well or long enough). Stumbling over words totally happens to me! Plus I often type or say the wrong word (I recently typed "like" for "look," for example).

I don't have any kids, but I spent ten years (ages 5-15) as a daughter of a woman with several stages of cancer (Mom eventually died when I was 15 of her second metastasis). It was rough on me, but not as hard on me as on a lot of folks in similar situations. Most of what I saw day-to-day is not that dissimilar from CFS or POTS - lots of fatigue, inability to get up and walk around, needing help for basic stuff, random fevers and illnesses, staying home from work a lot, tons of doctors appointments, treatments working or not, drug side effects - but no fainting. I have the following thoughts to share: (1) Mom was always really honest with me (and my sister, when she was still at home) about how she was doing. If she felt crappy, she told us so and why she was feeling crappy (nausea from chemo, fatigue, etc). When the time came for really big news (surgeries, recurrences, end of life care) she would sit me down on the couch (her couch, really!) and talk to me and give me time to ask whatever questions I needed, or just hold me while I cried. Or while she cried. (2) From ages 8-18 I had a therapist I saw every week and then eventually every other week. Some of this was to deal with issues with my dad (parents divorced when I was 2), and some to deal with issues at school (I got bullied a lot), but a lot of it was to deal with Mom's illness. My therapist had a pager I could call any time - night or day - if I was seriously upset and she would get back to me. She was there at my mom's memorial service, and she and I talked a lot on the phone at various points. She treated me like an adult, which was very important, but she also offered hugs, which was equally important! (3) On an optimistic end of things, dealing with a mom who was sick all the time was a great life experience, even when it was really bad. I grew up much more independent than most folks, which has helped me along the way. Plus I'm used to doctors and medicines and the ups and downs of specialist treatments with chronic illnesses, which has proved invaluable! And it gave me a lot of insight into hope and making the best of things and all that stuff.

I keep a daily mood chart for my bipolar disorder (which is pretty well controlled these days due to a variety of factors). I recently started keeping a note of what particularly triggered depression, since I've been having depressive spells for the last 6 months; every time it seems like it's depression due to dysautonomia making life difficult, not regular depression like I tend to have with the bipolar disorder. For me sometimes it helps to be reading about the disorder, learning as much as I can about it. Also hobbies (like everyone said), reading something humorous to cheer me up, taking naps, focusing on what I can still do whenever possible (instead of what I can't do, although obviously it's one thing to say it and another one to do it!), eating some chocolate, listening to and playing music, etc. Sometimes just knowing that I won't be depressed everyday and accepting this as a kind of grief (there's another discussion about grief right now on the board) and knowing that it's a normal feeling and not dangerous, if that makes sense?

I have one thing that sometimes works for me, which is playing the card game Set (basically a solitaire game where you try to match patterns). I carry a set of Set cards (hee!) with me in my backpack whereever I go. About brain fog... here is a description of mine during a meeting today; let me know if it makes sense from a subjective point of view. We start the meeting (3 of us in one room, all with laptops) and I am on the ball, working on explaining to Person 3 what Person 2 and I already know. We're running suggestions back and forth and staying on topic. This goes on for about 30 minutes. A few minutes later, despite being in a conversation with two other people in very close proximity, I begin to space. My focus is a bit blurry, I have a very mild headache, but I just can't figure out what is happening in the meeting. I have trouble following what Persons 2 and 3 are saying, want to switch topics so I can feel a bit more engaged, and start looking at my computer and playing a computerized version of Set to try and refocus. When Person 2 starts saying something, I try to tune in, but lose her by the end of the sentence. Eventually I give up. This can happen when I'm working on my own too - I just stop being able to write anything other than strict procedural stuff (so I can write "I did X today" but not basic emails) and it becomes very easy to spend half an hour staring at the wall unable to think clearly. Like someone dropped wool between "me" and my cerebral cortex.

Same here and it has gotten worse with the POTS. I have a particular eye issue (palinopsia, roughly "my afterimages when things move are about 5x as long as they should be") that is associated with more floaters, but with POTS they seem to have gotten worse. Silly eyes!

For me, the same as it's always been: INTJ. slightly expressed introvert (22%) moderately expressed intuitive personality (38%) slightly expressed thinking personality (1%) distinctively expressed judging personality (67%) It's been the same every time I've taken the test, starting at about age 10 with my dad and I comparing answers (turns out he's an INTJ too). Apparently it's a pretty common type among scientists, including myself

Same as dani here - I don't drive and it sounds pretty unsafe based on how I feel. What keeps me from driving are severe brain fog as well, eyes blurring randomly, but mostly spaciness; I can pick up quickly on auditory signals but given that I have trouble navigating crowds and have to count cars to make sure I pay attention to them... yeah, not going to happen if I'm traveling 20x faster and in a giant death machine. *sigh* Good thing my city has good buses and I can walk.

Earlier this week something really weird happened - I was walking from the kitchen to the living room with a big mug of tea in my hands. The mug was pretty full, so I was trying to be careful to avoid slopping tea over the side. Next thing I know the tea is all over my front, 3/4 of it is on the floor or on me, and I'm holding on to the handle with a fairly loose grip. I didn't drop the teacup, it's more like the muscle in my arm just gave suddenly or something. I had the same kind of spaciness during the incident that happens when you trip and fall suddenly - sort of the "wait, what just happened?" response. Any ideas as to what happened? Could it be linked to dysautonomia? The pharmacist mentioned microseizures with tiagabine, but I'm on such a low dose that I'm not sure that could be what happened.

I use a fairly standard recipe for rehydration formula: in 1 liter of water (or about a quart) dissolve 6 teaspoons of sugar and 1/2 teaspoon of salt. I personally add about a teaspoon of citric acid (which you can get at spice stores and sometimes at Asian markets) to make it taste a little more like lemonade. The one thing to note is that this does not replace potassium, so eating oranges/adding orange juice to the mix or eating bananas/adding a blended banana will help with that. The WHO put out a new recipe for oral rehydration salts, which I've copied here (add these to a liter/quart of water): sodium chloride (table salt) 2.6 grams, which is about 1/2 teaspoon sodium bicarbonate (baking soda) 2.5 grams, which is about 1/2 teaspoon potassium chloride 1.5 grams (not sure how you would go about getting some), which is about 1/4 teaspoon glucose (you could use sucrose, or table sugar) 13.5 grams, which is about 2.5 teaspoons

Yes! And even if I can get myself to wake up (well, get out of bed, I guess), I could fall asleep in my bathrobe on the couch. Or later on, finding myself nodding off over breakfast, or drowsy on the bus. Even if I've gotten enough sleep (or perhaps especially if I've gotten enough sleep?) it tends to happen on an almost daily basis.

Same here... while on a calcium channel blocker (diltiazem) first, and now a beta blocker (atenolol) second, my heart rate is way lower; even when I do something that would "normally" (without blockers) cause my HR to jump to 180 or 200, it only goes up to 120 to 150. But I'm still quite symptomatic, and may actually be worse off. If the increased HR is compensatory for something else, then just lowering it won't do any good and will probably make things worse. Hopefully the neurologist will take me off the atenolol *before* any autonomic testing...

Totally agree with both of you; it's certainly worth a try and it's extremely unlikely anyone would try a randomized trial (funding, hahaha). I guess my two concerns are cost (how much?) and the fact that the group themselves is not publishing any information on their success rate or anything other than "our patients can resume normal activities of daily living and are back to close to normal!" If they would even list on their website about how often it's successful, or any shared characteristics of patients, that would make me a lot more comfortable. I could see an argument that that would hurt their chances of getting patients, but on the other hand if their desire is to actually help with POTS, as opposed to just making money, it seems like the ethical thing to do. There's certainly a very nice attraction to seeing someone who's actually familiar with the diagnosis, though!

The two times I had it done (both before the dysautonomia developed) were both negative; we were worried about RA back then given the joint pain.

Let me give it a shot until someone more experienced comes along... When you're lying down, the tests showed that your autonomic reflexes are normal. In other words, your autonomic issues aren't happening all the time, just when you're not lying down (so it's postural). Your sympathetic NS and vagus nerve are properly modulating your heart rate when you're lying down. When you sit up, your ANS starts messing up, specifically the parasympathetic response (which slows breathing, increases digestion, etc) goes way up in an unexpected (paradoxical) fashion, and the sympathetic response (more the fight or flight, hyper, super wired, rapid heartbeat response) is normal to slightly higher than normal. Does that make more sense?

I'm with jangle and others here... I'm super psyched that it has worked for some folks who've been kind enough to share their stories here. But (as a scientist myself) I want to get a sense of how well it works for what percentage of the population, and whether there are correlations with particular types of POTS (e.g. do hyper POTS folks benefit more or less than denervation POTS folks, are there links with age/sex/medical treatments undergone/previous biofeedback experience/stage/symptoms/etc)... without that information there's no way I personally would be comfortable spending money on something with no scientific evidence. I'm happy it's worked for other folks, but the usual anecdote is not data argument always makes me feel so pessimistic! Also, as Elegiamore said above, and as a personal user of biofeedback for more than 5 years myself to fix a problem that the biofeedback only mostly helps with... biofeedback is not a magic bullet. It takes a lot of time, a lot of concentration, and it still doesn't work for everyone. Geez, I sound like a pessimist too! Sorry 'bout that :^) Glad the program has worked for some folks!

Some of the nausea I get (seems there's many flavors!) responds well to me eating ~constantly. So if I stop eating for more than about 10 to 15 minutes I start getting this acid/empty stomach feeling and the nausea gets worse. One thing I've thought about (to minimize calorie load, if nothing else!) is sucking hard candy, but I'm curious if folks have other suggestions, or if there are lowish calorie hard candies (I don't do artificial sweeteners) that have worked well for people. Ideas?

Echoing what other folks have said... I try to go for 70 to 90 fluid ounces a day, or 2.5 to 3 liters (give or take). I use a Nalgene bottle that I carry in my backpack. Before I started having dysautonomia symptoms, I was a very bad drinker; my urine was always dark and I was never thirsty (or I would get thirsty at the point where other people were seriously dehydrated). One thing that has helped has been keeping my bottle on top of my desk or next to me whereever I'm sitting down (for example, if I'm sitting at my desk it's on the desk rather than in my bag on the floor); seeing it out of the corner of my eye reminds me to drink. Or, if my wrist break software goes off, I will stretch and drink about a third of the bottle. Do make sure to maintain enough electrolytes too, though, otherwise the water will just go through! It's taken me some time to adjust but I have noticed that my thirst calibration has been reset and I now get thirsty much more easily. The other thing you might try is a water hydration pouch (a Camelbak or similar); I found while hiking (before the dysautonomia!) that it was easier for me to sip and forget that I was drinking. They come in 3 liter versions, so if you carry a daypack around you could just fill it up at the start of the day. Another option is tea; I can drink enough tea during one day (don't forget about the diuretic effect of caffeine, though) to get to the right hydration level with no problem, I'm that much of a tea junkie :^)

Depending on how I'm feeling, sitting on the floor helps; so does squatting (I'm one of the lucky squatting helps folks here). If I've got a little more leisure time and start to feel cruddy, or if there's lots of standing involved (e.g. on a tour or waiting in line) I pull out the small folding stool that lives on my backpack and sit. Like others have said, most folks think I'm clever for carrying one! The stool I have was only about $20 and it's helped a ton.

1 My sister also has CFS (although she denies anything like POTS, but I'm skeptical), and has a chronic sore throat as well. She also has recurrent mono.

Just got told to stop taking the diltiazem today; I've gained 20 pounds in the last 2.5 months since being put on it. My primary care doc (who diagnosed the edema, which was a little tricky since with compression stockings it wasn't in my calves except in the front of my shins) has had me call the cardiologist who put me on it to ask for another option (probably a beta blocker, although the cardio was a little nervous about those due to mood issues). I'm just glad to be off of it, especially given the edema! Plus the fact that it did ~nothing, besides lower my high heart rates, which (if they're compensating for something else) isn't the best idea.

Thanks for posting this! I had wondered lately how similar my fatigue was to CFS, although it can't technically be CFS since it's due to other issues (chronic pain, fibromyalgia, etc) if you want to get technical about it. I really like the article's linkage of hypermobility, dysautonomia, fibromyalgia, and CFS and their willingness to consider them as one large syndrome instead of falling prey to the fallacy that things with different names/different primary symptoms must be unrelated.

We just scheduled an appointment for couples therapy in January. I've been talking with my own therapist about our relationship in general and especially how my new issues are affecting it. He's afraid that I'll just continue to develop new bad conditions as I age (26 years old now, joints started in my teens, bipolar at 20, dysautonomia at 26) and hates how tired I get (the other symptoms bother him less). One of the comments I made is that I'm frustrated by his lack of acceptance; to me "it is what it is" and I can't change my diagnosis. My therapist's reply was that he can change (by leaving) and that's why it's harder on him. Makes sense to me. Hopefully couples counseling will help us figure out how to manage this diagnosis between the two of us.