peregrine

And here's the update. We had a long chat. Here's what she wrote in the test results (I got a copy of all of the graphs!): "Abnormal autonomic testing. POTS with venous pooling. Normal heart rate variability at rest, with deep breathing [the metronomic test] and Valsalva. Mildly abnormal sympathetic vasomotor dysfunction evidenced by excessive BP oscillations with head-up tilt. Borderline normal bilateral induced sweat responses. This study provides evidence for significant POTS with witnessed venous pooling as well as increased BP oscillations. The study demonstrates intact baroreflex mediated HR variability suggesting normal cholinergic (parasympathetic) function. There is evidence for mildly decreased adrenergic (sympathetic) vasomotor function with head-up tilt. Bilateral postganglionic sudomotor function [QSART] was borderline normal in a patchy pattern. Partial Ross syndrome would be in the differential." To interpret that with what she said... basically, I have a weird type of POTS - basically hyperadrenergic and pooling together. We're going to do some labwork - urinalysis (24-hour urine sodium, urine protein via various methods) as well as bloodwork (anti-SSA/Ro to rule out Sjogren's, HB A1C to rule out diabetes, HIV just in case since it can cause some of these symptoms, protein electrophoresis and immunofixation to look at serum proteins, and vitamin B12 to rule out deficiency). There are more tests we could do to look at more things, but they're part of the Mayo panels and thus insanely expensive, so we're saving those for in case these all come back normal. She says there's likely some small fiber neuropathy going on (which I guess would explain the pooling, which was very noticeable on the tilt test). Regarding the GI tract symptoms I explained, she thinks gastroparesis is not unlikely (and what I describe makes her think small fiber neuropathy even more) but that there's not much point in testing for it unless it gets severe. She says I also have NCS based on my history of passing out with needles plus the behavior on my TTT. We're going to stick with the compression stockings and up the salt to 10g a day (since I tolerate 5g just fine with no nausea/vomiting). Also going to drop the atenolol (while I've been off of it pre-testing I've noticed much less fatigue) and add propanolol (she says it's better because it decreases sympathetic nervous system drive in the hypothalamus, whereas atenolol doesn't really hit the brain). Also more exercise (starting swimming next quarter), trying to prop up the head of my bed, avoiding the things we usually avoid, etc. Plus a referral to medical genetics to talk about the hypermobility. And, guess what, guys?! She referred me to DINET and dynakids! I am so happy. You guys all rock and I'm glad she thinks so too!

Benefits >> side effects. So I tolerated Cymbalta for 5 months and then another 5 months because it was wonderful for my chronic pain and cognition. But eventually I had to stop it because my teeth were grinding the whole time (no permanent damage due to a nightguard) and finally my muscles were so tense even massage and electrostim couldn't get them to relax and I couldn't eat burgers or sandwiches because I couldn't open my mouth far enough. Naomi - yes! Sadly I haven't found anything either. The atenolol helps with almost everything else but not the spaciness. What have you tried? (sorry if I'm hijacking the thread!)

I have word-finding trouble too (and never used to! I swear! nobody believes me besides you guys), and my short-term memory has gotten worse as well. Long-term I have lost a little, for example it's gotten harder for me to remember which meds I take on a daily basis (this is one of the reasons I keep records), and I had to think and write them down before I went for ANS testing yesterday. Depression can really trigger some long-term and short-term memory loss (speaking from mild experience; it's embarrassing to introduce two people you've introduced before, or say the same greeting twice within 5 minutes), so it may not be the dysautonomia, but the latter can certainly contribute to things like forgetting questions, etc.

kalamazoo - in case you want more info: IST - Inappropriate Sinus Tachycardia. Either part of dysautonomia (likely in heissovereign's case, I'm guessing) or due to the sinus node (one of the biological pacemakers in the heart) behaving abnormally. Basically, your heart beats too fast and you get many dysautonomia-type symptoms (including fatigue, shortness of breath, dizziness, etc). NCS - NeuroCardiogenic Syncope. Also called a vasovagal attack or vasovagal syncope. Basically your vagus nerve (which comes off of your brainstem and innervates your heart, etc) causes your parasympathetic nervous system to increase and your sympathetic nervous system to lose function and you pass out. A lot of people (myself included) do this with things like needles, seeing blood, etc, but POTSies often do it with no apparent trigger. My ANS doctor says that it's common for folks with dysautonomia to have already had a vasovagal syncope response to unpleasant stimuli before the main dysautonomia shows up (like me).

Had my first TTT, QSART, and other things (breathing out hard through a spirometer-type thing, rhythmic breathing with 5sec in/5sec out) test today at the University of Washington. All told it was a 2.5-hour process but I had the nicest technician in the world. Other than the TTT everything wasn't too surprising, but the TTT - ah, goodness, I am so glad I have read what folks here have had to say about them. Here's my symptomology during: 0 minutes: tilted, started to feel like I would fall forward. Got a bit spacey. 2 minutes: lower legs started having an electric shock feeling (I associate this with blood pooling) 4 minutes: lower legs feeling really heavy, definitely pooling (she said they looked dark pink/purplish) 5 minutes: begin breathing rapidly due to shortness of breath 6 minutes: tech asks if I can hold on for a few more minutes to get data. She seems concerned. I nod! 7 minutes: begin sweating heavily all over (one of my two main "tells" for presyncope; the other one, nausea didn't show, I'm guessing because they had me not eat for 2 hours prior and by the time we did the TTT my stomach was empty and hungry). still SOB and almost hyperventilating despite attempted slowdowns. 8 minutes: tilted back to lying flat. 12 minutes: stop breathing shuddering gasps, begin breathing normally 15 minutes: heart rate back to normal, still have overall shivers/tremor She said throughout the entire process my HR and BP were all over the map; I knew that about the HR since I could feel it in the finger BP cuff and (hilariously) see the reflection of her EKG monitor in the paper towel dispenser. At one point the BP apparently got down to something around 75/68, which is super-weird (gotta love narrowing). I ran into my ANS doctor on my way out - she was in scrubs! I knew she was involved with this testing center but not that she was running around it in scrubs. She said hi, "see you tomorrow," and asked how things went; I explained the 8-minute failure (or success, hard to say when you expect/hope to fail since failure = data = help with diagnosis and treatment) and she was a bit dismayed ("but I've seen shorter, yours is just shorter than I expected"). We'll see what she says tomorrow. I felt well enough after (despite some serious fatigue and tremor) to go back to work and do some light data analysis (I'm in grad school, so work is super-flexible and the hospital is right across the street from my office), but not well enough to do anything heavy, and I just crashed energy-wise an hour ago. Also, QSART was painful-ish for me (similar sensation to a physical therapy electrostim but more painful and sharper), but - oh man - they use acetylcholine! So neat! One of my advisors and I squeed about it for a while, since he's a neurobiologist. We'll see what my ANS doc thinks tomorrow afternoon. Oy. But hey, at least we know I am pooling!

Hannah, take a look at this site and see what you think: http://www.hypermobility.org/whatishms.php They have other stuff on the site, like common tests for hypermobility, etc. I've found them to be a good resource!

I thought I'd read somewhere that a low fiber diet was best for those with motility issues? But I'm not an expert on this. Good luck - sounds definitely unfun.

Going off of the atenolol this week for autonomic testing has made me more and more aware of just how much it improves my symptoms (other than the spaciness, which nothing seems to touch) and quality of life. With it I went from unable to stand in the kitchen or shower (stools in both!) to being able to stand for a 20-minute shower on an okay day and being able to stand to cook a quick meal (with prep sitting down). It's amazing. But ymmv :^)

Yes... if what you're describing lasts a few seconds, up to half a minute or so, and then resolves spontaneously? It's not so much that my eyes stop and focus on something else, it's like they go blurry and stop focusing at all; I think it's caused by the pupils (whoo pupillary dysfunction in dysautonomia!) moving weirdly (mine apparently don't react strongly to light, which confuses my neurologist given I've no other eye issues, she says it's just more of the same dysautonomia stuff) and the brain failing to mesh the images together, maybe? Hard to say. In my case I can "wrench" them back into focus, but it hurts the muscles a bit, or let it hang and the focus will come back soon.

My joints hurt - all of them, with the exception of my spine and my elbows (although they hurt on and off). I get two types of pain - daily background and exacerbated. All of my joints get daily pain - they ache (the best word for it), sometimes throb, moving the joint hurts, avoiding motion hurts less. Then there's the exacerbated pain - so when I leave the house I can say "ahh, today is a knee day" or "oops, there go my hips!" That is usually sharper, throbbier, reaaaaly exacerbated by motion, requires me to shift the body part frequently to keep it from getting more sore, requires bracing or a cane to walk or use my computer, distracting, mind-numbing pain. The cracking/crunchy/grinding noises are separate; they'll happen in my knees, for example, regardless of whether they hurt more or less at any given time. My muscles also ache a bit all the time - more likely due to the fibromyalgia.

I'm a walker myself - the doctor says I should try swimming too and I need to get around to that. But I'm one of the 3-4mph walkers (along with MomtoGiuliana, I see) and it certainly gets my heart racing up nicely - and got both it and my lungs in shape just fine pre-dysautonomia. (I can't run myself, due to joint issues, but in some ways I think fast walking is almost better, and it's certainly easier on the joints!)

Happened to be looking for more details about the University of Washington (Seattle)'s autonomic testing lab, and came across this article by the director: http://pcs.hmc.washington.edu/epilepsy/EpiInfo/ans.html He describes the various tests that they do, what they're intended to target, how normal responses look, etc. Less stuff on POTS but the info on the non-tilt table tests is useful and has some nice diagrams. I found it useful - hopefully others might too? (some of this stuff is in the NDRF handbook, but this is a bit easier to follow to me)

rama, interesting you should mention that. I've always had a healthy BMI (other than brief med-related changes back in 2006 and now, it's always been around 20-21 - currently 25.5), and when I do count how much I eat in a given day I eat 2000-2200 kcal a day. I just break it into tiny chunks! This full-quickly thing is weird, though.

I'll see what she thinks. The only recent changes to my meds (which are my first suspect when things like this happen, although with the dysautonomia I find that's less true now) were the addition of the Lyrica and removing Cymbalta. Lyrica apparently can worsen lower GI dysfunction caused by other things, but the PI sheet for Lyrica doesn't mention anything else that resembles this other than dysphagia, and that's rare with it.

No - should I bring it up with my doctor? I've had on-and-off nausea my entire life, and have always had the small meals issue (I rarely take seconds, even on Thanksgiving), but this is the first time these symptoms have been this severe.

I know various folks on here have some flavor of GI issues involving stomachs filling quickly or emptying slowly, etc. I've had something in the last week that's popped up several times and is new to me. I'm normally a grazer - I prefer to eat at least 4 meals a day and usually eat up to 6-7, usually a reasonably sized breakfast/lunch/dinner and then snacks in between and after dinner with my meds. I usually eat less food at a given meal than most people - I always have leftovers from restaurants. No big deal, it makes my neurologist happy and is what my body prefers anyways. Within the last week I've had several of these episodes where I find myself wanting to bolt my food, and then I bolt it down and feel terrible. I feel like there's a bolus of food in my esophagus (past my windpipe, it's more a tightness-in-the-upper-chest feeling, kind of like when you were a kid and ate something a little bit too big to swallow) for hours, and I get muscle cramps and am sore for a while afterwards. It seems to come with a feeling of being full way too quickly - after I've eaten half of my meal, say - but "full" in the sense of "I shouldn't eat more, my stomach feels too full," not "appetite down after a meal," if that makes sense. I got another episode today while eating one of my favorite foods (pumpkin kaddo!) and was able to push back from the dining table and go sit and do some work for ten minutes (and write this). Any idea what this is? It doesn't feel like dysphagia per se - I can swallow liquids just fine - but is kind of close. I'm seeing my neurologist on Friday after testing on Thursday, and would like to mention it to her.

My spaciness - the feeling while standing or walking like I'm experiencing serious depersonalization, the fact that I have trouble noticing/processing visual stimuli (people walking towards me, street lights, cars) and less so auditory (I can hear cars coming more than I can see them). The other issues are annoying to debilitating, but this one is by far the worst since (among other things) it also affects my ability to be independent, I can't drive, etc.

Ah, sorry. Realized the last sentence might have been misleading! But I really appreciate the linked info - thanks so much! Personally I am certain they are linked; the neurologist agrees. Rheumatologist thinks there's no link whatsoever, and I think he's wrong (hence my skepticism - directed at him, not at the idea that they're linked!). My mother and sister are hypermobile, but sister denies any symptoms of dysautonomia; mom's not around any longer so I'm not sure. Sister does have CFS, but it appears to be due to chronic mono or something similar.

I've got hypermobility and pain here myself, although the doctor didn't mention EDS specifically. My mother had it, and sister (on maternal side) has it a slight bit. I have worse pain and hypermobility than both; varies from a 3-6/10 per day without Cymbalta, a 1-5/10 (mostly 1-3/10) with it, but I've had to stop it as I can't open my jaw from muscle tension. Rheumatologist says I need to be in shape (he equates it to marathon running shape, which I certainly can't sustain), use pain medication when things are really bad, and otherwise just be careful. Some physical therapy has helped, most hasn't. Apparently when I sprained my ankle back in 2001 the bones never quite went back in place, which is why that particular ankle has sprained/twisted 8x more since then. I also have fibromyalgia (diagnosed based on the tender points and general presentation), but nearly all of my pain is in my joints. New neurologist mentioned a consult with a medical geneticist about connective tissue disorders, but we're holding off on that until we get more info on the autonomic stuff. She seems to think the hypermobility and dysautonomia might be linked, my rheumatologist doesn't (and hasn't heard of such a thing, which I'm pretty skeptical of, frankly).

I get floaters all of the time, but sometimes - maybe once every 3-4 weeks - I get pinpoint sparks of light that dance around. It seems to correlate with feeling cruddier than usual, but not sure how. (is this a warning sign of low BP, anyone?)

Interesting you should mention this. I was sitting around 135 pounds in early October when I started diltiazem (calcium channel blocker). I got edema on the diltiazem and gained 15 pounds. We switched to atenolol (beta blocker, which has been super helpful in general symptom management) on December 21st, after the doctor had me stop the diltiazem. On January 11th she said the edema was gone but I was up to 155 pounds, and now at 161. I wonder if the atenolol could be causing weight gain? She tried to blame it on my Seroquel, or maybe the Cymbalta, but I've taken Seroquel at 12.5 to 25mg since 2007 with no weight gain and Cymbalta twice with no weight gain either. Thoughts?

My partner of 8.5 years and I have some troubles around my dysautonomia - he is taking a while to adjust and we've been going to a couples therapist over it (she's been most helpful). My problem is that I cope by talking about things, discussing stuff I've read, telling stories about how I feel... all of which disturb and upset him. If I joke that it could be worse he just gives me this sad look like the world is ending. Couples therapist tells me I need to make my disabilities take up less space in the relationship - which I agree with - and to talk about it elsewhere and go out to dinner with our other housemate (who has chronic migraines and is used to such talk and enjoys it) and talk with her about it. Hopefully this will help some - just started.

A few minutes prior: severe nausea to the point of almost vomiting, drenched in sweat (I can feel the sweat response flash across my body!), extreme anxiety. Then tunnel vision starts, I tell someone near me I'm about to pass out and need to sit/lie down. Tunnel vision closes down until I can just see a small circle, then that circle begins to go gray. If I sit down at that point I don't pass out.

Generally didn't exercise a ton as a kid or in college (other than walking), but between college and grad school I backpacked for 23 days (240 miles) straight in the mountains in California. Guess that might count...

I'm a weird one - I've always liked eating straight salt ever since childhood (we didn't salt food much when I was a kid, and don't salt a lot these days, maybe that's why) - I even wanted a salt lick for my birthday and use to use the horses' salt licks at camp! Weirdo. Nowadays to get 4.5g of salt in my day I just take 1/4 of a teaspoon of salt with each meal. I just do a lick of salt (out of my hand, yes I'm shameless) and then a sip of water so it makes salt water in my mouth. Helps me with nausea too, but I know some folks on here have nausea from eating straight salt. Guess I'm weird