peregrine

It's been a *shrug* drug for me - on it for about 6 months here. I'm taking 60mg 3x daily; I tried going up to 120mg 3x daily but had issues with slurred speech and confusion, so we dropped the dose again. I think it helps a little bit with fatigue, but it's hard to say; I might stop it in a bit, though will watch to make sure it's not helping with the dry mouth/etc side effects of clonidine. Certainly less of an obvious effect for me than atenolol and clonidine, and less useful than methylphenidate (Ritalin). The best layperson's description I can give you... let's see here. So acetylcholine is the main neurotransmitter (signalling chemical) of the parasympathetic nervous system (PSNS), which is the "calming" branch of the autonomic nervous system (ANS). The PSNS promotes things like digestion, salivation, decreases cardiac output, etc. Acetylcholine is broken down in the body by an enzyme called acetylcholinesterase (which stops the acetylcholine from working) to keep the signals from propagating endlessly. What pyridostigmine/Mestinon does is block the action of the acetylcholinesterase for a short period of time to allow more acetylcholine to hang around, which promotes the action of the PSNS. It doesn't cross the blood-brain barrier, which means that it only acts in the body itself rather than having some central nervous system/brain effects. In short, Mestinon supports/enhances the PSNS, which increases "relaxation/calmness" types of activities in the body, including decreased heart rate.

Ramakentesh - are you referring to clonidine (I guess technically an alpha2 agonist, but acts like an SNS blocker)? If so, curious as to your reasoning (I don't doubt what you're saying, I'd just like to know your thoughts on the matter)?

Have you considered something like clonidine? I don't know your exact situation, but I found it helpful when beta blockers only helped somewhat/only got rid of the tachycardia and not the adrenaline.

Worth mentioning - looking through the paper (which I still haven't finished reading), the original ASP (Autonomic Symptom Profile, Appendix 1 - the huge one) contains stuff on sleep. The COMPASS31 (the new one, Appendix 2) just contains questions on the following: - Orthostatic intolerance (questions 1-4) - Vasomotor (q5-7) - Secretomotor (q8-11) - Gastrointestinal (q12-23) - Bladder (q24-26) - Pupilomotor (q27-31) Essentially, as far as I can tell, this is the shorter screening item - I imagine they might administer this, see if the responses are abnormal, and then begin diving into all the stuff in the ASP (which includes these things but in more detail, family history, severity/duration of symptoms, color changes in the body, sweating, some questions for guys, sleep issues, alcohol/drug use, a question about concentration, and then a request for any other info you (the patient) think is pertinent). I do regret them removing the questions on sleep, sweating, and brain fog from the COMPASS31, but I imagine most doctors would hopefully expand on those if your shorter questionnaire is abnormal When I saw my ANS neurologist for the first time, she said up front that she might ask me some questions that seemed to make no sense/seemed unconnected - many of which are things on the full ASP. Folks without thorough doctors might benefit from looking at the questionnaires to see if anything "that's always been there" or "is my personal normal" is something of note (though of course one doesn't want one's doctor to think one is self-diagnosing!).

Take a look at Supplemental Online Material (appendices 1-3) at the bottom of the page - those are the score sheets, I think.

Are you on any meds that might be involved (e.g. ones that decrease tachycardia but don't treat other things)? I get adrenaline surges without tachycardia, but in my case it's due to the beta blocker and clonidine (and I get them less with clonidine) generally slowing my tachycardia.

Strange question - but do you have documentation of your POTS as a disabling condition? If it is (and you have that documentation), the professor and the department cannot (legally) refuse to let you reschedule the final (assuming that it doesn't fundamentally change the structure of the class, which seems unlikely for a calc final). I don't know if you do, but might be something to consider. (also, wow, anybody who says you can't reschedule the final when you are planning to go straight from there to the ER needs a serious reality check)

Clonidine has been helpful to me thus far, as has atenolol (I don't seem to have MCAS unlike some folks, so can tolerate a beta blocker). Clonidine gives me more energy (despite a leaden feeling in my legs and sleepiness - go figure!) - I think because I'm not triggering my sympathetic nervous system all the time. Atenolol improves my standing time and gets rid of the tachycardia and most of the palpitations. I also do salt/water/stockings because of pooling. Ritalin has helped with alertness and some brain fog; pyridostigmine/Mestinon is unclear in terms of whether it's doing anything. As a side note, do watch out for albuterol/Ventolin or anything else that triggers the SNS - they have made me much worse for several hours at a time even though I do have to take them for wheezing/shortness of breath. Definitely makes things worse for me.

I used to get those (and still do rarely) - night sweats with dizziness. Don't recall tachycardia but it's hard to say whether it was there or not. I feel like I get fewer now that it's winter, but it could be the clonidine - hard to say.

Just one week of gluten free here - no big improvements or changes other than having less appetite. I've heard from folks here that I might need to try longer - the nutritionist I saw at the rheumatologist (who specializes in joint-centered nutrition) said one week was enough, but I occasionally ponder longer.

For morning appointments (especially ones that aren't just "check in/med review" types, e.g. with new doctors) I try and bring my partner - he can help me get there (walking/guidance/bus) and can keep tabs on what's going on. You might ask for the afternoon appointment but ask to be put on the waiting list in case someone cancels earlier - probably won't help but worth a shot!

Neurologist says "hunh, weird, I don't have anything to say other than it's probably underlying POTS and not clonidine." I've asked if switching to the patch might help - more consistent dosing (though I've been very good about the every 12 hours dosage, a steady dose might be better than two larger doses). We'll see what he says.

Hunh - I'm on lamotrigine (an anti-seizure med), but no idea if that would prevent whatever seizure-stuff or not. Waiting to see what the neuro says... I'll report back.

In terms of fainting while having high blood pressure (using arm measurements)... having a high systemic blood pressure (i.e. at the usual point of measurement - just above the elbow - or at the wrist) doesn't always correlate to having enough blood pressure in your brain, especially in folks with pooling/blood flow issues. Not enough blood in the brain - even if the systemic blood pressure is okay - can lead to syncope. For me, high blood pressure leads to the shakes, feeling really cold, and my eyes behaving wacky. It's funny - I can really tell!

Yup! Especially if what woke me up was some alarm-type sound - cell phone vibrating (which could be a phone call!) or doorbell or door knocking or similar sounds all cause me to bolt upright and cause the heart rate to go up. I think it's some combination of sudden awakeness plus adrenaline saying "good morning!" It also doesn't help that my atenolol is wearing off right around my wakeup time, since I take it in the mornings.

Hi all - since starting clonidine (which I otherwise love) I've had these weird episodes about once or twice a week. They start fairly suddenly - the first thing that's obvious is a fairly strong tremor, and then I get some weird eye stuff (my eyes feel like they're vibrating and I lose much of my depth perception and my vision blurs more frequently, which also messes with my balance somewhat). I also get confusion (speech is hard but doable, I don't feel safe walking places alone since I'm a bit disoriented) and I feel hot, cold, or both at the same time, but heart rate is normal. They tend to last for a few hours, give or take, and I'm usually pretty wiped afterwards for the rest of the day. No obvious prodome, either - they just start - often when I'm sitting down, sometimes stressed, sometimes not. Sadly haven't had my BP monitor with me when they've happened, so I'm not sure what if anything that's doing. Has anyone here had anything similar (tremor, eye weirdness, temperature - all episodal)? I'm going to email my neurologist about it, but I'm curious if this sounds familiar to anyone.

Congrats! What awesome news! Regardless of where you go and what you research, you'll do an awesome job - and having a doc who's even aware of dysautonomia at all (let alone is intimately familiar with it!) is a great success!

I get no stimulant reaction to caffeine whatsoever (other than its diuretic effects). My ANS neuro recommended trying a lot of coffee all at once, so I drank two double-shot mochas in 30 minutes. End result? I felt normal, could have napped even. I apparently do react to other stimulants - the Ritalin is obviously effective in my case - but not to caffeine.

I don't wear them sleeping unless it's a short nap and I have to get up afterwards quickly (like a nap at work, since my whole lab does it!). My current pairs that I bought in February are still going strong, although they've stretched a bit in the thigh area and two of the individual stockings have small runs in them. I wash them by hand in the shower and hang-dry them, which might help with the life; the opaque ones are generally much more durable than the "sheers" or similar. Durability is good since mine cost $85 per pair! The one thing I would recommend for durability is wearing socks between them and the floor/your shoes - that way they are less likely to get runs or be damaged. I wear toe socks with my toeless stockings and sandals so I can wear toed (Chacos) sandals but protect the stockings.

Clonidine has helped a lot with surge-type things - e.g. now if I see a bird flying near me I go "hunh, a bird!" instead of "hunh, a bird! oh gosh my heart is racing and I feel terrible." I actually have more energy now that I'm on it (despite it causing narcolepsy-like sleep attacks and muscle fatigue in my thighs; for me the side effects are worth it but they are tough) - I think because I'm not constantly running on an adrenaline high and tiring myself out.

My legs are always itchy after nighttime showers - and it's worse if I stand afterwards than if I sit. Goes away when I lie down. It seems to correlate 100% with blood pooling in my case (it's actually my best sign of pooling, since I don't have much color change).

... fascinating! I hadn't realized the acetylcholine issue was the root of the dry mouth/eye - good to know. I'd been thinking of getting off of my pyridostigmine due to lack of obvious effects, but if it's supporting the parasympathetic nervous system in the face of clonidine's anticholinergic activity, I may want to stick with it. I haven't had the cognitive impairment with clonidine - the reverse, actually - other than speech, things have improved a lot (I suspect due to the fact that my sympathetic NS is no longer active 24/7). Hunh - thanks for the info! (I've noticed a vague trend of less joint pain on the clonidine, but since that pain isn't strictly neuropathic, it must be something else. not complaining...)

I'm also one who swings back and forth - often hot with presyncope or environmental heat, then cold post-presyncope. It's annoying - dressing in layers definitely helps, but still a pain!

I eat about 6g of salt per day (just kosher salt washed down with water), plus get another 1g or so from my diet. I find the kosher salt is easier on the stomach (and far cheaper) than the tablets, though you have to be more careful measuring it. I originally was doing 10g per day, but my 24h urine sodium came out too high (too high for POTS, my dysautonomia neuro said it was high otherwise but not problematically so and in a good range for POTS), so I cut down to 6g of salt plus dietary salt.

Yup! Most definitely. A nap is totally the way to go for me in terms of reset-ing my body - hilariously I didn't even realize Katybug used the same phrasing until I'd already typed this!