peregrine

Interesting - my sister (also fibrocystic) has to avoid caffeine, but they didn't tell me that - I guess because she needed much more follow-up, since otherwise my clinic has been more comprehensive than hers. Good thing too - I like my black tea!

A neuro who specializes in dysautonomia (I know, right?). The cardiologist (specifically a cardiac electrophysiologist) thought it was just atrial tachycardia and wanted to do an ablation, said I probably had some dysautonomia, but that there was no point getting tested for it because of the atrial tachycardia. Which turned out to be wrong :^)

I'm 26 and have been getting mammograms and MRIs for a year now (the usual rule I was told is ten years before the first diagnosis in the family; my mom was diagnosed at 33 and so I started a bit late). The plan is that I get a digital mammogram (more sensitive than film) every year in the spring, and an MRI with contrast every year in the fall, so I basically get screening every 6 months. The first mammogram showed that I have very dense tissue (fibrocystic, yup!), which is another reason the MRIs rock. Sister on my mom's side also has fibrocystic breasts, although they did more screening for hers and she was quite a bit more worried as a result. Both of us have some hypermobility in the fingers; I'm the one with hypermobility everywhere else, although it may or may not be hypermobile EDS (hypermobility syndrome may or may not be the same thing) depending on who you ask these days :^) Edited to add - the MRI I got last fall was really terrible for one reason: no support for the upper arms, so they cut off circulation to your arms and they get super-numb. Given our issues with circulation, I'm going to ask if I can get some padding or *something* so that doesn't happen again. Doing that for 30 minutes can cause some real damage! I don't know if all of the breast MRI setups are like that, but something to watch out for.

I personally like having data, although I now only get my HR when I'm seriously symptomatic, and I do it just by doing a pulse at the wrist. My doctor, on the other hand, thinks that there's not much to get from keeping an eye on one's HR; she says that it's more worth it to just look at how you're feeling. Like other folks have said above, sometimes it's helpful to know *how* my HR is doing when I'm feeling ucky, but I don't think I'd do anything different myself; just good to know. If you're starting something like a beta blocker to slow the heart rate, it's a different story, since at that point you want to know whether it's doing anything. (I've heard that the chest straps are quite a bit more accurate than the wristwatch type, but that some folks find them uncomfortable, and that the main reason they're more accurate is that they work better under heavy exercise like running, which I personally can't do)

I haven't tried midodrine; the doctor hasn't brought it up the last few times, unsure as to why. I should clarify that, while sitting/lying down helps some, it's not a total fix; I am somewhat spacey much of the time these days, it's just that it's always while standing and only sometimes-much of the time while sitting. The only reason I'm hesitant to treat it via avoiding pooling entirely is that doing anything else that helps prevent pooling (stockings, countermeasures, salt, water) doesn't do anything for it. But *shrug* who knows? (issie - neat! I do like my vitamin C, as it happens, although I haven't noticed any effect in particular)

Today was the first day I almost passed out in public - in a grocery store, how typical. Thankfully I was with my partner, spotted the signs, tried to ride them out (which works sometimes), started severely graying out and losing depth perception (my "about to pass out" final tell), and sat abruptly. Thank goodness for my stool! The good news is that I can tell presyncope nausea/sweating from overheating/nausea/sweating which I was worried about given the start of summer weather. Afterwards - for several hours - I was pretty out of it - had serious trouble talking for the first few hours (for some reason the minimal amount of signing that we use together was much, much easier; my throat felt swollen and stiff and the speech part of my brain didn't want to make me talk, similar to when I was on imipramine). Super brainfoggy too - difficulty thinking, difficulty interacting with my partner, serious fatigue, some issues with vision and the like, random laughter, getting too cold abruptly, much worse than my day-to-day symptoms. I ended up heading home and taking a nap and am mostly back to normal now, although it was touch-and-go for a little bit with some close calls before we got home. It kind of reminds me of what friends with epilepsy describe as post-ictal, but as far as I know I don't have epilepsy and certainly nothing in this presyncopal episode looked like epilepsy. Is this a common thing for folks who do faint or get close? Is there anything you'd suggest trying in the future other than waiting it out? (I'm sure this has been discussed before, but couldn't figure out what topic to search on)

Yup, although it isn't an immediate fix; I don't tend to use it during the day to treat it because it interferes with my work, but in general lying down (or just "flopping" as we call it at home) is helpful.

The countermaneuvers, stockings, and salt/water do definitely help me maintain a longer standing time and keep me less lightheaded, but they don't do anything for the spaciness per se - it appears to be unrelated to the lightheadedness (in that it's always present, and the lightheadedness isn't always present and, if present, is addressed via countermeasures etc). Issie - thanks for the info! Wow, that sure is one restrictive diet. The nutritionist I talked to (who worked with connective tissue and joint issues folks mostly) said to try eliminating gluten, dairy, and sugar, but not all at once like yours suggested - that's impressive! I found with the week off of gluten that it was actually very easy not to eat it cravings-wise, surprisingly so (even resisted chocolate chip cookies that came out of the oven in front of me), but that I felt worse without it. Hmm. Probably worth a longer trial, definitely. About the blood pressure monitoring - that's good to know. The TTT monitoring they did on the tip of my finger (with a tiny cuff, not just the pulse oximetry) seemed neat but didn't look usable beyond the room. I wonder if this is something my doctor would have thoughts on... hmm. Should ask her.

(partner and I are coming up with a list of things to snack on for a one month period to test gluten again - my big issue is that goldfish, pretzels, and saltines are my method of dealing with nausea, so I need to find alternatives for those first)

Issie hmm. I'd been told by the nutritionist I saw in the past for joint stuff that a week was enough, but it might be worth another (longer) shot. Thanks for the advice! I am a little confused, though - if you do have withdrawal symptoms, then you don't need the food? Could you explain a little more if possible? Also - does anyone know of any way to monitor blood pressure while on the go, analogous to the way you can get heart rate with a Holter or a heart rate chest strap/watch? I'm curious to see what my BP does when I'm actually walking/spacing, and we only have the TTT data which says that I fluctuate like crazy. I'm hoping better situational data might help? The stockings, salt, and water have helped my standing tolerance a lot but haven't done anything for the spaciness. Troublesome :^)

Just as a brief report back - trying the gluten free for a week and then gluten overload trick didn't do anything; I did worse without gluten overall, though no response for the spaciness. Going to drop my doctor an email and ask her what the next thing to try is... I kind of feel like I'm pushing her on this but (a) she's leaving for another hospital this summer and ( I want things to improve, darn it :^)

Yeah - I keep getting kind of upset at the "it's not the beta blocker" and the general "it's not medication X, that's not a common side effect" stuff I keep hearing. Guess what, if it started right after I started the med, it is probably the med. Grar :^)

I gained 35 pounds in the last five months, probably due to a combination of a calcium channel blocker and edema caused by same. But! it didn't go away when I started the first of two beta blockers, nor the second either. It's finally stabilized after that, but it's really frustrating. I don't want to go off the beta blocker because it does make some things better, but I do want to lose the weight! My docs keep trying to claim it's the mental health meds I'm on, but I've been weight stable on them for years.

I haven't tried them myself, but have you considered a cooling vest? They're supposed to be great with helping with the heat, and with the dry heat in AZ they will probably do pretty well.

I haven't driven since March of 2011 when the spaciness (my driving limiter and my worst symptom) started. I wasn't really much of a driver before (I drove, but rarely alone and we don't have a car), so I already had to pay a lot of attention. But now I can't pay attention to crossing the street half the time, so there's no way that I could safely drive a giant machine (like what AllAboutPeace says, "For me, a vehicle is just too powerful a machine for me to be willing to take chances with."). It hurts a lot to limit myself that way - a lot of the projects I want to do for my research I can't do because I can't drive to field sites. I have to think about where I want to go next for work (since I'm in school) - will it have good public transport? Can I walk or bus (ideally bus) all the important places? It's just frustrating and lately it's really been getting to me, but I'm still not going to break the self-imposed restriction because it just isn't safe.

Some practical thoughts - (1) they won't let you carry water through the security checkpoint, but you can carry a water bottle. I always bring my liter Nalgene and then fill it at a drinking fountain past security - lots of people do this so it's not weird. I personally don't like the Nuun tablets but my doctor suggested trying them; you might think about Gatorade powder or other options too. Though, be prepared if your salt is table salt for them to ask what it is :^) The last time we flew they took a sample and did some chemical analysis on it, which was pretty funny! (2) you can ask for a wheelchair at the ticket counter, which will keep you from standing through security (sometimes I look at the line, then think about whether I want one or not). I find that doing anything pre-flight to aggravate my symptoms (like excessive standing) is a definite bad idea. If you have to get patted down, sometimes they have chairs and you can ask to sit in between steps. (3) I've heard some folks here talk about getting bulkhead seats (you can get them with a doctor's note, I think, and a phone call to the airline) so they can stretch legs out and put legs up against the bulkhead. Plus then you're closer to the restroom if you need to pee often due to water intake. (4) Don't feel bad about asking the flight attendants for as much water, soda, whatever as possible (I do soda for the sugar while flying, for other folks here it's a no-no). (5) And - if you can - definitely schedule an afternoon or a day or whatever to rest on both sides (especially when you get home again!). Good luck!

Thanks for posting this! Tons of useful info :^)

Maiysa - haha, so true. Some of the stuff that's there I wouldn't even say to my partner! I personally would probably tone most of it down a bit! The thing I always have to sit down and think when I meet a new person is... how much do I want them to know? Are we going to be interacting just on occasion - at social events run by other people, or work events (if you work, or volunteer, or do some other regular activity)? Or am I going to be getting to know this person very well, and should I give them a five-second elevator speech about making sure things don't go awry (that's my more direct cut-and-dried approach, I think)? Most of the time the long-winded explanations are for family and friends who already know something very weird is going on, or for people who are curious (which always makes me grin). Always a tricky area for folks with any chronic disease, really.

Dana - Hmm, I disagree with you somewhat on how to reply to people with suggestions, etc. But your mileage may vary, as they say... For me it depends on the person. If it's a random person on the street (this happens to me occasionally, usually when someone sees me with a cane or sees me limping), then I just shrug it off, thank them for thinking about it, and move on. If it's a family member or a friend that I see often (or even, a few times, a doctor I will be seeing more than once) I thank them, but also try to gently let them know that most of the standard suggestions are things I've already tried or I know won't work. Why be pushy like this? A few reasons. First, it lets them know that the problem is real, I'm not faking it (a common problem), I may have to cancel events suddenly, etc. Second, since I will be seeing them somewhat often, it keeps it from coming up again - and it hopefully keeps them from feeling like they need to research something for me. Third (although hopefully this doesn't happen to everyone, and rarely to me), it keeps person #2 from telling me that I would get better if only I had done what person #1 suggested in the first place. And fourth, it keeps people (again, hopefully infrequent) from trying to guilt-trip me for something entirely out of my control ("if only you'd eaten a better diet" etc). By speaking up and emphasizing that I can't cure it with the commonly known joint treatments (ibuprofen, glucosamine, fish oil, etc) it sends the message that this is something unusual, something to keep in mind as an out of the ordinary thing that has to be taken into account. I think for a lot of people how they react is a matter of perspective - e.g. for them, feeling like they have the flu is really terrible (and it is!) but for me that's everyday. But, like AllAboutPeace says, it's all relative - I'm not struggling to have a place to live, or worrying about a loved one overseas. Though I do sometimes feel abnormally put upon by the universe :^) But! I hear we all have somewhat different situations. When I found the HMS letter some years ago I thought that a few things there were put a little more baldly than I might put them. But since then I've found that family and friends that didn't get that "wake up and pay attention" style of letter or sit down conversation (or hadn't seen me at my worst off) often just took my issues for granted, didn't ask whether I was up for something on a given day, or just kept walking super-fast and completely ignored me limping and dizzy along behind because they assumed it was "just another type of sore joints" or something like that, or ignored my asking them to slow down because they just assumed I was out of shape rather than asking why I wanted a slower pace. So personally I find being direct is the best for me. Like I said, your mileage may vary, just find something that works :^)

SoliDeoGloria - I wonder if you feel more dizzy from walking because your legs are doing less intensive exercise, so they aren't pumping blood back to your head as much as when you're jogging (when the muscles are pumping)?

I get lightheaded after exercising at the gym (not after walking around, but after specifically doing exercise stuff) - both recumbant stationary biking and swimming. The swimming is worst, I think probably because I was more horizontal than the recumbant bike which is more like sitting with the legs somewhat elevated. I've never actually fainted but it was close the first time I swam; it's just unpleasant otherwise. Now after biking I sit on the bike seat for a minute or so, then get up and stand around the bike, then lift the leg - the whole thing takes a few minutes. With swimming I stand in the shallow end (thankfully the pool at my university has a shallow end I can stand in!), then sit at the edge of the pool, then get up with the help of the ladder and hold on to it for a little bit. I always get funny looks from the lifeguard staff, though, but it's worth it to not fall over. No idea about my BP at the time, sadly.

I took Premarin and then Vagifem for a few months (to deal with the low estrogen) and it just gave me more morning sickness, so I stopped. No obvious effect on the joints, though.

Hunh - funky. I'm on a low-dose estrogen birth control (like the standard pill, but with 57% as much estrogen) because I get morning sickness on the higher dose pill. But! my circulating estradiol is incredibly low, "below a post-menopausal woman" is what the menopausal gyno specialist said (I'm mid-20s), probably driven down by the pill in some weird induced metabolic thing, she says. I wonder if that means I'm more progesterone-dominant despite being on a standard pill formulation? (I have hypermobility and pain) Haven't noticed any decrease in pain when I'm off the pill in between packs, though, but I have maybe a dry bleed for a day or two rather than a full period because my estrogen is so low.

I'm with yogini on this one - it takes a lot of effort to support your head on top of your neck, and when you have a limited amount of energy you may be able to put it to better use if you support your head, maybe? Not 100% sure.

Jangle - any lower impact options for those of us who aren't supposed to run or do stairs due to joint issues? I'm excited by your progress!