peregrine

I have a chart that keeps the following info: Month/year Meds (some blanks here, I write down what I take every day) Fluid intake (high/low, or oz) Salt intake (grams) Exercise (what and how much) Pain (0-10, what aids I use (cane/braces)) Appointments Nausea (0-3) Sweating (0-3) Excessive daytime sleepiness/fatigue (0-3) Cognitive impairment (0-3) Eyes (pupillary dysfunction) (0-3) Presyncope (0-3) Other symptoms and then a set of bubbles that lets me track spaciness as 0-3. I keep track of sleep (start, finish, duration, quality, naps) on my bipolar chart. I only have it as a pdf, not sure how to upload it here - maybe PM me and I can send you a link? I don't have a way to get it to you anonymously, and I'm trying to keep this online identity separate from my real one :^)

Ooof, Bren, so sorry to hear. No head trauma at all - concussions etc? I know that the bony plate that the olfactory neurons go through between your nose and your brain is delicate (and shifting it can cause permanent loss of smell), but if you haven't fallen recently then that seems unlikely. Might just be a med side effect. No fun. My father has been mostly unable to smell since birth (he thinks very strong roses are very, very lightly scented), but he also (like you said) can't taste much of anything. Good luck!

I don't have low blood sugar, but I do have a great deal of trouble talking after presyncope (nearly passing out). I slur a bit, have trouble word-finding (more than usual), and have some sort of speech inhibition in the brain. But the rest? Oof. I'm glad you are doing all you can to figure out what's going on there - good luck to both of you!

I haven't passed out while sitting, but I've come very close - all three times from stimulus-triggered situations (twice from repeated needle sticks, once from hearing about how they do cardiac ablations and won't sedate you for them! freaked the cardiologist out a lot). In one of the two needle stick situations I did lose my vision, but fortunately they followed my (and my partner's) instructions and lowered the chair back immediately (nowadays I just get everything done lying down except shots). In the other double stick situation I actually was reclining on an exam bed. So it definitely can happen while not standing. Elevating the legs is definitely a good call if she can do it - for example I can elevate mine on my backpack when I'm out and about.

Hi Debbie - welcome! I also hope your appointment at UNC is helpful. As a thought, since my autonomic neurologist mentioned this to me - have you been tested for Sjögren's syndrome? It generally results in dry mouth and low tearing, and seems to be associated with ANS issues too. I expect the UNC folks will pick up on this right away, but just in case it might be worth reading up on.

My dentist asked me to talk with my neurologist about any contraindications for treatment (good dentist!). Neuro hasn't said anything about avoiding epinephrine, and I had it after the spaciness started but before I noticed the tachycardia. I did get some epinephrine for an IV placement after the POTS started and very nearly passed out, but it was hard to disentangle that from needle-induced syncope stuff. Definitely a conversation to have with both your neuro/cardio/whomever and your dentist, and especially for something major like this, a good call to put them in touch together. In the past I've had dentists call my psychiatrist to make sure that the Seroquel (which can trigger long QT issues) wasn't a contraindication for lidocaine, so they should be willing to do it.

Late mornings are not too bad for me, but part of that may be that I don't get up until 9-10am :^) My worst times for cognitive symptoms are between 5-7pm (after doing some symptom tracking every 15 minutes for a week; I'm also best in the early afternoon, say 1-4pm), but no time in particular seems better/worse for general POTS stuff as long as I've had enough sleep (otherwise mornings are a mess in general).

The memory effects they mention are interesting - I'm on propranolol (have been for about 5 months now) and haven't noticed any, but it might be the dosage - I see that the article you linked to in the first post was 40mg 3x daily, and I'm on 15mg 2x daily (max was 30mg 2x daily which caused dyspnea and bradycardia). I'm glad to not have the memory loss, but I could see it being useful in that case - and wouldn't have thought of propranolol as a medication for it. Neat!

The POTS/JHS person here says "thank you!"

Depends on the aerobic exercise, I guess (assuming you can do it) - even if you're not deconditioned (pre-POTS I walked 3-4 miles a day, so it's not like my legs were weak), they can help build up some of the skeletal pumps in the legs. Though I agree - I got really tired of explaining that I wasn't deconditioned, it was in fact something else, I got exercise, etc. Obviously it won't help everyone, but it's probably worth a try since it's usually fairly safe if done properly. My ANS doc prescribed recumbant exercise biking and swimming, which haven't done anything noticeable for the POTS but are good overall.

Mine's also constant, with some good days and some bad days. No episodes to speak of, although I do have some idea what triggers bad days most of the time. But certainly nothing like flares. Edited - reminded by Alex's post that I do have a set of probably 3-4 "bad days" if I've had a particularly close episode of presyncope - one where I actually had to sit down to keep from passing out. It takes me several days to recover from one of those.

From a treatment point of view - the spaciness that I experience with POTS is very similar in its effects to depersonalization, which is very common in folks with PTSD (and is something I get, rarely, during mood episodes, which is why it was so familiar when it started). Unfortunately, the ways that depersonalization is treated in PTSD are typically anxiety-based treatments - cognitive-behavioral therapy, anti-anxiety medications, some other mood stabilizers - and none of those are effective towards my POTS-spaciness. My autonomic neurologist actually suggested I talk with my psychologist about cognitive-behavioral techniques to deal with the spaciness, but the psych and I agreed that there's nothing she and I can do together, since the issue is not incorrect thinking (as in PTSD) but lack of cognitive ability/thought process due to not having enough blood in the brain (in all likelihood). I think there's some knowledge to be gained from understanding how PTSD originates and why it does cause some autonomic symptoms, but I'm wary from the treatment point of view as stated above (in addition to the social/medical problems) - I think it might lead us (particularly when considering physical PTSD symptoms) towards less effective treatments. But still, interesting points.

I'm with others - no obvious changes in body temperature but I do run hot and occasionally (especially after presyncope) very cold.

Thank you, issie, so much for this video. Finally watched it last night. It seems to answer a lot for me - especially why I seem to have both hyperPOTS and pooling! And the type of insomnia (frequent arousal) that he describes is exactly how my insomnia operates - I wake up every hour or so, look at the clock, then turn over and fall back asleep, but the end result is that I'm exhausted in the mornings. Thank you! Super-glad to have seen it!

I don't take anything in particular for migraines - just a cup of tea and some ibuprofen for the rare ones. Mine are pretty minor when they happen - just a standard headache with some photo- and phonophobia, no nausea. And you're right about the dual type of POTS! The video that... issie, I think? sent out had a neat explanation of EDS and POTS and how you end up with a dual type (you overshoot too high after standing, which is sympathetic overdrive, but then you overcorrect and BP and HR crash and you pass out, basically an issue of overcompensation on both ends).

I started Prozac about 1.5 months ago - but a very low dose (5mg). I also take Seroquel, but just for sleep (12.5mg nightly, have taken it for about 6 years). Not sure of BP effects from either; my psychiatrist takes my BP at every visit and there hasn't been a noticeable change, but since I fluctuate between 100/60 and 140/85 it's hard to know if I'd see one.

I'm a fan of canned soups, salted crackers, miso soup, soy sauce, things of that nature. It sure is funny to walk into a sandwich shop and ask what the saltiest soup on the menu is! People give you the weirdest looks :^)

I got stiffness on Lyrica, which (in combination with it not really doing anything for the chronic pain) caused me to come off of it. Almost all of the stiffness has gone away.

Damaged/nonfunctional valves in the leg could definitely cause pooling. The valves in the veins are "one way" meaning they allow blood to flow from your feet towards your heart, but if the valves become damaged then blood can pool above them, not get pushed through, etc, which could easily lead to pooling. My first set of compression stockings had a nice diagram of the various types of valve damage and how pooling could result.

Mully - who have you tried contacting? I'm going to be sending out an application or two in the next six months (assuming clonidine doesn't fix my extreme spaciness and trouble walking) and would appreciate more info (you can PM if that's easier). No advice, sadly, though I've seen that Canine Partners for Life has trained two dogs for POTS and one for NCS.

After trying two different abdominal binder-type things, I finally went with suggestions from other folks here and got myself some Spanx. It is working well for me, though it's a pain to get on/off (I keep hyperextending my fingers if I'm not careful). Sometimes nausea is worse with it on - which is not too surprising. Hard to tell so far if it has an effect on my symptoms - not too surprising as it's only been about 5 days. I'm also a bit nervous that any effect it has on presyncope, etc will be countered by the lack of air flow around my torso. (poop warning!) The weird thing is that it seems to be increasing? my gastric motility. Normally I (for lack of a better word) defecate 3-4x per day, and it varies from hard to soft. Since wearing it the last few days it's probably 9 times out of 10, and always really soft. I have some occasional gastroparesis-type symptoms (overly full suddenly, stomach cramps after eating, etc), but it's pretty rare so I haven't noticed any changes yet. Is this normal? Do other folks have this happen with abdominal binding?

I hear you about the documentation - it was a huge plus to me to get the Holter and then tilt table results and have them be very obviously abnormal - the other medical stuff I have is much less testable/observable, so having the documentation was huge!

Why yes, I am stressed! Having a chronic illness is stressful. Ugh.

Self-imposed in my case. I started getting spacey about a year and a half ago - I have trouble judging distances, speed, etc, which is clearly a no-go when it comes to driving given that I have trouble just crossing the street. My doctor seems to think that the self-imposed driving ban is a good idea, but since I don't have a car and rarely drove before, and was the one that brought it up myself, she didn't see the need to do it officially, I guess? Though - yogini's point is scary, I'm kind of nervous about renewing my license now. I know that I won't drive unless I improve, but I do want the ability in the future, maybe? Hmm.

Issie - interesting you should mention the saliva testing, my physical therapist (who's super integrative) mentioned that today as well and says he knows someone who does it here in Seattle. If the tests are positive for wacky cortisol, what are the options as far as treatment?