peregrine

One of my biggest problems is that I "space" out (essentially, I walk or sit on autopilot and don't fully realize what I'm doing) pretty much every day. While walking places, this means that I often forget to watch for cars at intersections, etc. I'm wondering if anyone has had any tricks that have worked for them to maintain alertness? One trick that has been somewhat helpful is keeping a "Prius count" for the day; there are a lot of Priuses (Prii?) in my city and counting the ones I see every day helps me remember to look at cars. Anyone have any other tricks or tips that work for them?

Was going to ask this question, but realized that someone had already asked! My initial neurologist (the one who referred me to an autonomic specialist) said I should avoid driving for now. I live in a city with good mass transit and don't own a car anyways, so not driving is not a huge hardship for me right now, but it will be in the future (especially if I need to travel for work reasons). My main issues are that I get spacey and my eyes tend to blur, so I'm not really comfortable with the idea of walking, let alone driving a heavy machine on a freeway. Have folks been able to resume driving once they've had some treatment success?

I'm a graduate student (currently on my fourth year, so I basically just work in a lab all day), so I have flexible hours which has been the main reason I can keep working. I haven't changed my hours per se, but have gotten a lot more proactive about clever scheduling and not attending seminars, etc.

1 My mom had a really severe reaction to Ativan (she forgot the name of her kids and husband). What she and my stepfather ended up doing was taping a sign up above the bed that said "NO ATIVAN" in giant letters and pointing to it any time the doctors tried to prescribe it. Do remember that you can refuse treatment! The wallet letter is a really great idea; see if you can also get your cardio to put a letter in your medical records (assuming that they share the same system with the ER you went to). Sorry that happened; it sounds terrible!

My sweetie and I (together 8 years so far) are having some similar issues, although we aren't thinking of splitting yet. But I worry about it now in a way I never worried about it before. He always looks so sad when I'm too tired to do something, and when I describe potential side effects of my meds he keeps reacting with fear/frustration. He's been okay with holding my hand while we walk everywhere (or, if too hot, letting me hold his belt), but he's having a lot of trouble adjusting (and has his own untreated depression to boot). I think it's been harder than with my other chronic illnesses, because it's a daily problem (unlike the bipolar, which comes and goes and responds well to treatment most of the time) and it's developed since we met (the joint pain predates him, so he came in knowing what was going on and I had strategies to deal). Serbo, do you still have access to that article on dating with POTS? I'd love to give it a read.

I've got fibro and what's probably POTS, according to myself and the cardiologist (seeing the neurologist next month). Fibro has been with me for a while; I've had general joint pain issues since I was young, worsening constantly after 15 and now in a steady state. It's been a bit tricky figuring out whether the brain fog (or any other symptom for that matter) is any of {bipolar,bipolar medications,fibromyalgia,chronic pain,dysautonomia} but at this point I just roll with it both in terms of causality guessing and treatment. The only factors that seem to be common to helping all of them are getting enough good sleep (heh), some exercise, and pacing the day carefully to avoid fatigue.

I've been taking Cardizem (generic diltiazem for me) for about 2.5 months now. In my experience it has slowed down my heart rate much of the time (although not always; it peaked at 160 today which is higher than post Cardizem), but hasn't done anything for any of the dysautonomia symptoms (fatigue, spaciness, eye blurring, brain fog, etc) and may have made them worse. Going to talk with the neurologist next month about going off of it. It doesn't seem to have lowered my BP, though.

1 I don't tend to have abnormally large pupils, but my partner has noticed from time to time that my pupils are different sizes (not always, just occasionally). It doesn't seem to strongly correlate with particularly bad visual issues (the blurriness that is one of my major dysautonomia issues), though. I do have super long tracers and many floaters, which in my case are worse on serotinergic drugs (my Seroquel and Cymbalta). In my case they're benign and due to neurotransmitter upregulation (palinopsia is the technical diagnosis).

1: Fatigue and brain fog 2: Spaciness while walking/standing 3: Eye dysfunction (blurry vision that takes active effort to push away) (1) and (2) switch places on a daily basis depending on whether I've gotten enough sleep; 1 predominates when I haven't, 2 when I have. Nausea, tremor, palpitations, shortness of breath, chest pain, sweating, headaches, being cold, and feeling wired all affect me, but usually are intermittent (nausea is fairly constant but usually at a low level) and not as severely debilitating.

Most of the time I help out by doing food prep (cutting, sorting, etc) while the other two folks in my house do the cooking, although often I don't trust myself around knives (when the eyes go blurry and the fatigue is severe, or if my hands are tremoring) so I'll just sort salad greens or similar. I recently purchased a bar stool that's light enough to drag around the kitchen, which means that I have been able to tend things like soups while stirring without having to stand up. I have noticed that the bar stool with its footrest is not as helpful as a low chair (for some reason sitting up high doesn't help as much?), but it's still way better than standing.

Definitely! It's one of my "it doesn't make me feel better, but ignoring it makes me feel worse" items. If I don't eat fairly regularly (and, before dysautonomia, I was always a grazer, 4 meals a day kind of person), I get really badly off, *especially* if I'm standing or walking around. These days I carry a granola bar or two and a ziploc bag of goldfish any time I'm away from home. The goldfish thing is funny; they kill the nausea like nobody's business, and they're pretty much the most effective food for when I'm having bad symptoms.

1 I'm currently on diltiazem (Cardizem), another calcium channel blocker, prescribed to help with the atrial tachycardia since I refused ablation. In my experience it has (mostly) slowed down my heart rate; things that used to trigger it to, say, 200bpm now trigger it to 140bpm. But that's all it did; no improvement in the dysautonomia, and I think (subjectively, don't have enough data) that it actually has made it worse. (I say dysauto because I haven't gotten a diagnosis yet, but it looks like POTS according to me and the cardiologist)

I have a weird side effect from serotinergic drugs (Seroquel and Cymbalta in my case): I get tracers (developed before any dysautonomia stuff by several years). Basically, when you move your eyes or head, there is an afterimage that stays for a few microseconds, but mine stay for longer and the "trails" objects leave can be up to a few feet if I'm particularly sleep deprived or on higher doses of the meds. I did have a workup with an optometrist (which was normal) and with a neurologist (also normal), as well as a full brain MRI with contrast (also normal). I'm not 100% sure if this is similar to what you're discussing, but at least in my case I know it's benign, due to medication, etc. I do have pupillary dysfunction issues with the dysautonomia, but they seem somewhat unrelated (my eyes just fade off into blurring unless I'm actively staring at something, and sometimes even then).

Ah! Dr. Robinson recommended that I see Dr. Oakley (she didn't know anything about dysautonomia besides the basics). After a long and difficult struggle with the referrals process, I will apparently be seeing Dr. Thyerlei (according to my PCP). Can you tell me more about her? (trying to remember if that's within the rules of the board)

MRI went fine (although the breast MRI position is weird; basically you act like you're lying over the edge of a couch arm with your torso and head lifted about 1' above your arms and legs, which is a great way to get your arms to stop having circulation, which was not so fun), although I nearly passed out when they put in the IV line for the contrast since I have serious needlephobia I'm working on. Whoo vasovagal presyncope!

Thanks, you two! I'll report back if anything weird happens, although feeling better with your reassurance.

1 I get massages every two weeks to help deal with my joint pain, and can't really do without them given how much they help; they're also a mood lift for me when I need one. I'm not sure how much they help with the POTS, but they certainly don't hurt it.

She didn't specify exactly what was wrong (and now I regret not asking!). The p wave is definitely there in the strips, but is often jagged or square, and steeper than the t wave (rather than a smooth wave like you see on examples), and ~always smaller than the t wave. Other than that I'm not sure exactly what to look for, unfortunately. She definitely said some type of SVT, though. Neurology next Monday (in a week); I'll report back in as to whether they're useful or not. Thanks for all the help!

I'm getting a breast MRI with contrast next week (preventative due to family history, not diagnostic); apparently you lie on your stomach. I've had a brain MRI before with contrast, but that was before the dysautonomia stuff started happening. Anything I should watch out for?

Apparently Dr. Elena Robinson I don't know anything about her, though. Dr. Oakley would have been the first person I'd have guessed (he's the only one whose profile even mentions ANS). Dr. Robinson apparently will be seeing me at the Northwest Hospital outpatient clinic (up by Northgate), and I'm seeing her in 10 days. No idea how she is about autonomic stuff, which is why I asked for the recommendation. Many thanks! Peter! *grin* I think I met him during grad school interviews in Genome Sciences, although that was four years ago and I haven't seen him since.

Anyone in particular at UW's Neurology clinic that you'd recommend? My doctor referred me there and I'm seeing someone on Monday the 31st, but if there's a particular person I should be on the lookout for, that would be interesting to know. Thanks!

I've got fibromyalgia, plus hypermobility syndrome (hypermobile plus pain - fun times!) - finally diagnosed with both by a rheumatologist back in 2008; prior rheumatologists said myofascial pain syndrome, which didn't account for the joint pain, which is my main problem. And apparently I now have POTS (still getting used to having another diagnosis and symptom cluster to deal with). I also developed bipolar disorder back in college. We know with some certainty that the bipolar is from my dad's side and the hypermobility is from my mom's side. I joke with my primary care doctor that my nervous system just has it in for me - nearly all of my health problems are nervous-system related. We did do a brain MRI back in 2009 to rule out "structural abnormalities" [aka tumors] as a cause of some vision stuff, so at least I know that my central nervous system looks mostly right... *grin* Starting to believe these things are all tied together I just can't believe that my body and nervous system can have this many things wrong with it, all for independent reasons.

1 I had never had any dysautonomia symptoms, other than background nausea, before starting Cymbalta. With the Cymbalta I got really spacey while walking; after about four months we finally connected spacey with high heart rate, so I tapered off the Cymbalta and waited for it to go away. Of course it didn't. So now I have POTS (the electrophysiologist says the Cymbalta couldn't have triggered it, although I'm skeptical) and an underlying atrial tachycardia. I'm back on Cymbalta these days - too valuable to stop given that symptoms continued without it - and the spaciness is a tiny bit worse, but the pain is a lot better. I don't regret taking it in the first place - having my pain improve that much was a big win - but I am a bit irked :^)

Just curious if anyone knows of a dyautonomia specialist in the Pacific Northwest (USA). I live in Washington state, but there doesn't seem to be anyone on the NDRF website closer than Minnesota or southern California. Has anyone seen a doc in this part of the country that they could recommend?

I have a history of depression (as part of bipolar disorder), so the cardiologist wouldn't put me on a beta blocker to start with (so we went with a calcium channel blocker). Not 100% sure if beta blockers potentiate already potential depression or cause completely new depression, but it's worth talking with your doc and trying a different med.