peregrine

Definitely with you, Issie, on the "hmm, not sure which, drop both and add one back at a time." For me I really prefer to have some objective measures (or strict subjective ones) to see how meds are doing. Case in point... I decided this afternoon that Lyrica is not working for me and that I need to drop it down to the minimum dosage (since it did improve my sleep at that level) rather than keep it up at 300mg when it's not doing anything. Why did I decide this? Because I looked at strict subjective measures (my personal joint pain scale, which uses external behaviors rather than internal levels) and less strict ones (desire for various aids) using data from several weeks with no other med changes. At this point I'm comfy saying that the stuff isn't working for my joint pain. We were pretty sure it wasn't working back at 200mg, but decided to try this so we can say for certain it's not working. (I also agree with you that many folks (not the ones here!) don't pay enough attention to their bodies (although that can be a problem, it's something they address in CBT for chronic illness sometimes) and so can't give good data on what works at any given point. and also with you and rama that things need to be personalized as much as possible) Herbal medicine always makes me nervous because of the natural variation of compound levels in different plant samples (varies so much by the time of day, season, climactic conditions, etc), which makes it hard to regulate dosage and figure out what really is working and what the ideal dose is. (I might be biased towards worrying about the variance, since I research plant compounds) But folks seem to figure it out much of the time, as long as they take it slow and individualized. Definitely not in favor of universal supplements for all! And, Dizzy, although I agree with you that in many cases you can't just pop a pill to solve a problem, I would sure hate to deal with my central nervous system without them, and sometimes they really are the right solution for many folks. Sadly can't fix my amygdala's misregulation without meds, but I do envy the folks that can :^)

Had an MRI pre-POTS to figure out what was wrong with my eyes back then (weird condition called palinopsia - roughly, afterimages/tracers last about 3-5x as long as they should, sometimes appearing several feet long! exacerbated by serotonin reuptake medications, but otherwise benign although it made nighttime driving a bit more difficult). Nothing abnormal. It's often worth it to rule out "structural abnormalities" as my neuro and I agreed to call them, but I doubt they'd show anything with visual issues that are purely autonomic.

Rama - yup, an SNRI (used for both depression and chronic pain - in me it worked great for both, minus the jaw clenching side effect that made me stop taking it, darn it). Curious, since I don't know the difference - how do increased cerebral and peripheral NE differ - what are the effects? (thanks!)

Issie - from the neurotransmitter point of view, Cymbalta hits serotonin and norepinephrine, and (to a very tiny degree) dopamine. Lyrica does, according to some sources, hit noradrenaline to a degree, but not significantly and not in the central nervous system (details - the prescribing info sheet discusses animal model references to the noradrenergic pathways below the brainstem only, which shouldn't be linked with CNS issues as a result; Wikipedia says it may decrease the release of noradrenaline levels, while Cymbalta is a reuptake inhibitor, so effectively increases norepinephrine; they're almost opposite there). The norepinephrine reuptake action in Cymbalta tends to give me insomnia and overall muscle tension; Lyrica is almost the opposite in that regard. So, hopefully at least! they shouldn't be doing the same thing (although, who knows with this stuff, right?). I was off of Cymbalta (and hadn't started Lyrica) the entire month of September and things didn't improve at all. I will probably taper off the Lyrica soon, since it doesn't seem to be doing anything for the pain. Dizzyde - thanks! Keep me posted :^) Wow, it really is starting to sound like we're clones. Rama - would that make it a pooling problem (causally), then? This feels different from lightheaded-almost-going-to-faint-ness, but it's hard to say what the difference is. Sometimes I get both. The beta blockers and pyridostigmine haven't helped with this, but they did with my overall standing tolerance. Hmm. I'd love to hear more if you've got theories!

Thanks! Good to know. I'll poke her about that next time we talk. Regarding the meds, I just updated my list-o-neurotransmitters - here's the current batch: sodium channels - Lamictal blocks calcium channels - Lamictal blocks, Lyrica blocks glutamate - Lamictal decreases, Lyrica may decrease GABA (indirectly) - Lyrica decreases, but very weakly and only indirectly beta-1 receptors - propranolol blocks beta-2 receptors - propranolol blocks acetylcholine - pyridostigmone increases (blocks degredation) I've been on the Lyrica and propranolol since January of 2012 - doesn't seem to have affected the spaciness at all. Lamictal since summer of 2006. Pyridostigmone since last week. Hmm. Normally I would say it's all cut and dried, but after the Cymbalta triggered this whole mess (or so it seems) I'm less comfortable saying that any more! nothing particularly GABAergic, opioid hitting (Lamictal does only in passing), etc that I might expect to cause spaciness, but who knows. Definitely some brain fog going on; got to love the brain fog! I just don't like the brain fog where I step into a road with a car on it without looking, or looking but not connecting it to "that car might hit me." Not fun times :^)

Hmm - I had thought Lyrica was affecting different receptors? My rheumatologist says it affects an entirely different part of the pain pathway in the brain, although it doesn't seem to be doing much so I may taper off of it soon. For me the spaciness is an entirely new development - I've been on and off various meds, the only two that have been consistent the whole time that I've had spaciness have been Lamictal and my birth control, and I've been on both for many years before this whole thing started. So I'm pretty sure it's not all the various tweakers (although I agree there are a lot!) unless one of them has shifted something permanently the way Cymbalta seems to have. In terms of personality - thanks for clarifying! Not so much a flat line, more a feeling of being out of it when I get up and walk around, mostly gone when I sit but still there at times. Certainly I have moments where I'm entirely unspacey but they are usually sitting at home on the weekends. Sounds like maybe I should ask the neurologist about the norepi level, then? Just lying down, or standing too? I'm glad to read about your experiences with clonidine both here and on other topics - thanks so much for sharing your thoughts about it! - super helpful. Hope your edema resolves soon, that's definitely not a fun thing. (my only brush with edema was positive in that it forced my doctor to take me off diltiazem, which I wanted off of, but *sympathy* for your edema situation!)

Kind of an odd question here. So, some of you might have seen me ask questions about spaciness (analogous to the depersonalization sensation one sees in psychiatry, but of different etiology - POTS-specific for me). So far neither my doctor nor I have managed to figure out what to do about it (I'm honestly not convinced she thinks it's a huge problem, but for me it is symptom #1 in terms of both frequency and severity/life impact). I'm pretty sure that the spaciness is specifically due to the upregulation in my sympathetic NS (which the doctor diagnosed based on my TTT, we haven't done standing norepinephrine or anything similar), since it started when I started taking Cymbalta (which plays with norepi reuptake in the brain). Several months later (after a 12-day road trip with very little walking) is when we first started noticing the tachycardia, nausea, etc, although I've apparently been pooling for much of my life given memories of blotchy legs in the shower. My theory is that pooling has been happening for a while (some peripheral denervation and maybe connective tissue stuff), then Cymbalta triggered a hyperactive SNS, then some mild deconditioning triggered the overall POTS. So far beta blockers (atenolol and propranolol) haven't treated the spaciness; going on or off Cymbalta hasn't; diltiazem (calcium channel blocker) hasn't; pyridostigmine hasn't (although it's improved things otherwise, like pupillary function, standing tolerance, and fatigue!); exercise hasn't (worsens it slightly which might be consistent with an SNS etiology). My ANS neurologist suggested I look at cognitive-behavioral techniques, but the therapist and I concluded today that they're not going to help (and don't exist for non-anxiety-related spaciness anyhow) - the idea is that if I can't think due to low blood flow to the brain/sympathetic overdrive, trying to do mindfulness techniques isn't going to work. The therapist also thinks that my overstimulation, especially on large crowds of people, is probably also SNS in origin - the idea being that large moving patterns and a "oh no, lots of people, need to navigate now, howwww?" reaction trigger the SNS into fight-or-flight mode, and then you overstimulate. My mental list of tricks to try next are a gluten-free week followed by a sudden upswing in gluten (to see if that helps) and asking the neurologist for a sleep study (to see if it's related to my sleep, although that's unlikely given the sudden onset while I've had insomnia for years), in that order. ANS neurologist thinks that we aren't going to try clonidine for now (unclear as to why). What do you guys think? Is clonidine or a similar SNS antagonist (sympatholytic) worth a shot? Has anyone else had this type of SNS-spaciness link? Other things to try? Sorry, kind of at my wit's end here...

As a random tip (in terms of letting folks come to you) - my sister got married in India (her husband's from there) and during the reception (on a different day from the wedding, maybe something that might help) they sat in a throne-like couch and had folks come to them to say hello and give good wishes rather than circulating among the guests. My sister was pretty tired (and feverish from her CFS, especially with the 104F heat!) and I don't think she'd have made it without the couch thing. (fortunately I didn't have POTS symptoms yet, so I was mostly okay)

If it helps, the nurse usually can't tell you anything over the phone (various legal reasons from what I recall) - so the doctor has to tell you herself. Mine actually emails me, which from what I know is kind of out there; she's called me a few times. My guess is that the neuro was drawing tests to exclude some issues or give her some idea of how you're doing so she can figure out exactly how to treat you. We're all different, and everyone here seems to be on different drug/exercise/other regimens for different reasons - I'm guessing she just wanted to get some info and wants to talk with you in person about treatment, etc. Best of luck!

My doctor went with the "your QSART looks like you have denervation weirdness, let's do the tests but not bother with the biopsy" approach. Roughly, she thinks there's not much point in establishing a definitive dx of SFN as long as you rule out the potentially problematic causes (diabetes, HIV, Sjogren's, autoimmune autonomic ganglionopathy, B12 deficiency, amyloidosis were what I got tested for). Roughly, there are treatments for SFN, you can try them if it's problematic (sounds like it is in your case; they work on other stuff too, for example Cymbalta seems to help some folks in general), but you may not need the biopsy etc for you to try treating it. Does that make sense? (also, I am curious about your "it's probably just circulation" - that is what I was told about my arm! hmm. and my legs totally do that when I stand in the shower, but not when I sit. I almost want to scratch them bloody just to make the itching stop (not SI))

Things to watch out for too - from what I recall airlines are not required to sell you empty seats - in other words, if (for example) there is a shortage of seats, they can put people in "your" seats without your permission. I recall a guy who was waiting for his family, they didn't make the flight, and he tried to refuse to let the airline take his extra three seats away and they said "nope, it's our policy" and that was that. So you may want to check and make it super-obvious that you want these seats for you to lie down for medical reasons. When my dad's wife's mother moved from CA to TX they got an air ambulance flight, which was covered by insurance. But those things are super expensive.

Regarding needing to sit down while in the middle of shopping, zoo, etc - I have a small portable stool I got from REI that was about $25. It can fit over my shoulder or in the water bottle pocket of my backpack (secured with a strap on the side), so it comes with me everywhere. Takes about 5 seconds to pull out and sit. It's a little uncomfortable for more than 45 minutes of sitting, but still sittable. This means that, on a bad day, if we're waiting in line at the store, coffeeshop, walking around a museum, etc I can just plop it out and sit for a bit, then scooch forward pulling it under me. Definitely one of my favorite things.

Yeah - and those three are just the SNRIs. The SSRIs just touch mainly serotonin, but they may have minor affinities for other neurotransmitters depending on the drug. For me, I was lucky enough to take Wellbutrin (dopamine/norepi), Cymbalta (serotonin/norepi), and Seroquel (serotonin among others). Having those three at separate times made me aware that for my personal neurochemistry norepinephrine really promotes insomnia, bruxism (grinding teeth), and jaw locking, and that serotonin dramatically worsens my palinopsia (eye tracer afterimages). So now I know what to expect when I go on a new psych med depending on what neurotransmitters it touches of those two.

Depends on the med - Wellbutrin boosts dopamine and norepinephrine, Cymbalta boosts serotonin and norepinephrine, Savella does norepinephrine and serotonin but it is more strongly norepinephrine-affecting than Cymbalta.

I do have some thoracic outlet issues on my right side from a cervical (extra) rib - mostly my arm wakes up being completely numb (as in, no muscular control even) when I wake up a few times a year. I guess this might be TOS - it feels a little different, though. But yes - perhaps something to ask my PCP about.

I've been in my current relationship for 8.5 years. I was diagnosed about a year ago; partner was already used to dealing with bipolar and joint issues, but the POTS has been a way bigger issue in our relationship. It ***** - case in point is right now. I was super-tired last evening, so napped from 7-9pm; I've been awake since then (currently 7:15am where I am) and I need to be "up" in about 2.5 hours. This means I will be a mess today (since I need 8+ to function), so again another wasted day from his point of view. We've been seeing a couples therapist which has helped some, but she has tried to get me to make the POTS take up less "space" in the relationship (be less of a big deal), but I really can't do that. I mean, I can apologize for being weak, tired, needing to hold his hand, but he doesn't want me to be sorry, only better. Very frustrating. What I would say for starters is to focus on what you *can* do for a relationship. Can you be the one to sit in the kitchen chopping veggies if someone tells you what to chop (brain fog, can't stand, etc)? Can you plan things for other folks to do? Sit on the bed and fold laundry? Watch a movie together on the couch? Rather than what you can't do (plan dinner, stand at the stove, drive, go do the laundry, go play tennis or garden). Maybe try to spend your good days with your partner as much as possible - so if a day is good, see if you can come home early/try to not spend all your time resting if you won't crash later/etc. It's difficult; I think a lot of us are with you in terms of where we are in relationships, so you're not alone. Good luck!

One thing to watch out for - if you're a super hippy woman (not tie-dye, just big hips and rear :^), make sure not to get a unisex binder. I got one, and consequently had to velcro it in a kind of diagonal thing to make it fit; end result was severe nausea and worsening of my mild quasi-gastroparesis. But I just ordered some women's compression running shorts from REI, we'll see how those go. At least they can be returned if they don't work (hence why I ordered 3 different pairs!).

It's a nightmare to withdraw from (did it twice), but for me it was a godsend in terms of dealing with chronic pain from joint issues. I swear, the first week I actually could move my hands without pain (haven't been able to since about age 15, mid-20s now). But, unfortunately, it did two nasty things for me - first, it appears to have triggered permanent sympathetic overdrive (hyperPOTS, roughly), and second, I get serious muscle tension from norepinephrine reuptake, and it locked my jaw up really badly. Hence I can't take it any more. But if I could do something (non-addictive, muscle relaxants are addictive for most folks in the long term) I would take it back in a heartbeat.

Let's see - trying to grab the ones that are POTS-specific. In approximate order of frequency, with severity (1-3). 3 Spaciness while walking (failing to see cars, people, etc) 3 Extreme fatigue 3 Cognitive defects (words, brain fog, etc) 2 Pooling/discomfort/numbness in left hand (not really POTS, more POTS etiology) 3 Lightheaded while standing 2 Pupils doing funny things, blurry vision 3 Need at least 8 hours of sleep to function (can't push it any more, used to be able to) 3 Overstimulation on visual/auditory stimuli (crowds) 2 Hyperhidrosis (oversweating) 3 Overheat easily 1 Can only function in meetings if less than 45 minutes long 1-2 Nausea 1 Headaches 1 Palpitations 2 Shortness of breath 1 Presyncope Only the cognitive defects and extreme fatigue predate the POTS developing (and are likely due to a combination of joint pain, bipolar, and psych meds). I think that's it? But I hear cognitive defects make it hard for me to remember them all :^)

My left arm tends to pool blood quite nicely - it gets numb and tingly all over, feels heavy, swells slightly, occasionally is mottled; squeezing from fingers to elbow with the other hand helps, as does raising it above my head. Tends to happen when I'm upright and the arm is dangling down. My QSART on that arm was positive/slightly abnormal, so there's probably some peripheral denervation there. My neurologist seems to think it's a vascular problem only (why, I have no idea, she knows my legs pool and says it's the POTS, of course), and that I should talk with my primary care doc. This seems silly to me, honestly - pooling is pooling, it seems to be postural, etc. She seems to think it's not a big problem - it is more discomfort than anything, but I wish it would stop. Are there solutions for arm pooling? I know that Brightlife sells some lymphadema products, but I don't know if they're safe/effective for blood pooling in POTSies or what level of compression would work (same as my stockings? etc).

My QSART was positive at my left hand (which pools, swells, mottled, tingly, numb, etc) and right leg, but the neurologist said it's not worth it to do the biopsy (I guess she feels it's largely untreatable so why bother? is that actually true?). My reflex screening results were normal, tilt table was the abnormal one (although my Valsalva was a bit funny, she said it was one of deconditioning, dehydration, or sympathetic failure - but not sympathetic failure due to success on the tests, and I wasn't dehydrated, and I walk several miles daily, so she's confused).

Hunh - my eyes do the weird thing (I think this is linked to occasional eye blurring, not sure), but the antibody test from Mayo was negative. But I hear that Ab tests can be negative despite symptoms :^) I get serious sensory overload in conjunction with spaciness (my #1 symptom) - especially crowds of people (motion is bad, but movies etc are okay for some reason). Airports are terrible (esp if they're boarding the gate next to yours and you're sitting nearby), I have to leave home for class 15 minutes early to miss the inter-class rush, crowded stuff requires me to be led by the hand to get through. Also noise - lots of folks in one room and I fail to filter the sound. Just noise and vision, though - not smell, touch, or taste.

Could you ask your doctor about prescription non-NSAIDs, or can you take acetaminophen or another non-NSAID painkiller? (I don't know if those have historically helped your headaches or not) That might give your stomach (and head?) some pain relief, while also giving it a chance to heal up.

Hmm, now I'm wondering if I should try Depakote again... interesting! (of course, I don't know if I have NET issues, so it may not be wise)

I've had a lot of luck with "It Stays" - the adhesive that issie mentions. Otherwise my thigh-highs fall down a lot. One thing that seems to help is to *not* wash the silicone band in between uses if you are using adhesive - for me the stickiness then builds up and so it holds better after a few days than it did otherwise! Otherwise they do sell garter belts, or there are the chaps (although the ones I've seen are one-sided. I would be nervous to cut holes in them, since the Juzos I have have lots of warnings on the box about not cutting loose threads for fear the whole thing will unravel! But if Rissy has had experience with trimming them I would defer to that. (edited to add: they do still fall down 1-2x/day, but it's not nearly such an annoyance and I can deal during those times. I just wash the adhesive off with a warm washcloth every night before putting lotion on my legs)