peregrine

With atenolol (and maybe some contribution from the pyridostigmine and clonidine), I have very rare tachycardia - my HR rarely goes above 120 and maxes out at 150 under strenuous exercise. However, I get presyncope very frequently - daily now with the clonidine, but worth it given its other positive effects. So I guess I'm another one!

Started recently - today I thought I was getting a cold, now unsure. I'm seeing a pulmonologist on Weds 12/5 to talk about my recent shortness of breath. My sister mentioned vocal cord dysfunction, which she has, and it sounds very similar to what I'm experiencing - it also includes a sore throat (like a pre-cold) and I get hoarse or occasionally lose my voice and have to clear my throat a lot. We'll see what the pulmonologist says, but it's very annoying!

The brief hearing issues happen to me too - especially in my left ear (funny as it's the better of the two). They predate the POTS - I think a lot of people have brief episodes of ringing/loss of hearing, but I'm not 100% sure. My partner (who doesn't have POTS or anything wrong medically) says it happens to him from time to time and is pretty common in other folks. I guess I personally wouldn't worry about it unless it increases in frequency/severity or you start having other symptoms, but that's just my take on it.

Although I love clonidine for its effects on suppressing my sympathetic drive, it does come for me with several side effects that vary day-to-day - notably, increased hypotension (it's gotten as low as 85/45 while at home) with daily low-grade presyncope (instead of weekly-monthly), sleepiness during the day (not fatigue per se, more like narcolepsy in some ways), and a feeling that my legs in particular are made of lead, so that walking is very tiring even if otherwise I'm feeling okay. Strangely these are still less bad than the things it treats, but *shrug* I hear we're all complicated that way :^) It definitely does hit the ANS really hard, though.

(also, dosing? are you taking 0.2-0.4mg a day? most folks take 0.1-0.3mg twice daily; 400mg is maybe a typo? just want to make sure we're talking about the same drug here? (sorry, don't mean to be pushy, just trying to understand))

Speaking as a bipolar person with dysautonomia too... I obviously can't diagnose, but what the original poster describes sounds a lot more like chronic illness-induced depression (the type that dani says, where the illness tires you out and you get depressed, but wouldn't be depressed if you were well). I get (well, got, my bipolar is well controlled with medication, which is one of the ways bipolar can be diagnosed) many of those manic symptoms, and it's definitely distinct from (predates!) my dysautonomia. Obviously not everyone is the same, but the bipolar I experience (bipolar II with mixed states) is definitely much more obviously bipolar than what other folks describe above.

(for what it's worth, there are still no definitive lab/imaging tests for bipolar, although some of the imaging tests are looking somewhat promising)

I'd be tempted to dump the psychiatrist and find a psychotherapist that will work with you concerning strategies for chronic illness-related depression symptoms. If you don't need medication for dealing with the depressive symptoms, you arguably don't need a psychiatrist anyways, but a therapist might help you cope with the rest.

My blurry vision comes and goes (though improves with clonidine). I get transient episodes - a few minutes at the most - but like Chaos, everything blurs. If I use really large text on my computer, I can sometimes read well enough to follow links on the internet, but not much more, and otherwise can't really see very well.

Spaciness is the worst (though the clonidine is helping tons with that). After that? Brain fog/mental fatigue/difficulty concentrating are definitely big ones. Though lightheadedness is also a problem...

Atenolol 25mg once a day these days. I took propranolol in the past.

80-90 with beta blockers, 120ish without them.

I went ahead and looked at his publication list on PubMed. Some interesting things - he really has focused mostly on MSA, with 20 papers discussing many aspects of it. Past there, he's looked at a few other autonomic issues (I didn't break them out, but only one paper for each thing, 9 total), ANS testing (4 papers), orthostatic hypotension (2 papers), and basic research (5 papers, stuff that's not directly clinically relevant or doesn't involve humans). He also has 4 papers on POTS:

http://www.ncbi.nlm.nih.gov/pubmed/8902319 - "Certain cardiovascular indices predict syncope in the postural tachycardia syndrome."

http://www.ncbi.nlm.nih.gov/pubmed/7746369 - "Postural tachycardia syndrome (POTS)."

http://www.ncbi.nlm.nih.gov/pubmed/22993288 - "Deconditioning in patients with orthostatic intolerance." (which found that 95% of POTS patients are deconditioned - "deconditioning is present in almost all patients with orthostatic intolerance and may play a central role in pathophysiology.")

http://www.ncbi.nlm.nih.gov/pubmed/23122672 - "Postural Tachycardia Syndrome: A Heterogeneous and Multifactorial Disorder." (this paper)

I... the guy clearly has a big background in MSA, which is awesome. But I am also nervous about the fact that he fails to cite many other POTS authorities - only two Grubb cites - and one of his four POTS papers says that everyone is deconditioned, so everyone should be exercising. I'm a big fan of exercise for POTS if folks are able to do it, but (1) it doesn't work for everyone and (2) it perpetuates the myth of the POTS patient as a former couch potato who suddenly starts feeling cruddy because they're a lazy slob. He really doesn't seem like he has the background to make the kind of sweeping statements he makes here, especially since he doesn't cite the folks who've been working on this for a long time. Grar.

Grar. My ANS neurologist was explicit that I not use the term "dissociation" to refer to my spaciness specifically because she was worried folks would treat it as a mental issue. And - regarding chronic pain from hypermobility and fibromyalgia and mood disorders - my POTS started at a time when I was at my lowest pain levels since childhood (due to Cymbalta for said pain, which is probably what caused the POTS) and also at one of my most stable times of my life mood-wise. So I am totally flabbergasted by this. I thought "finally, a condition that has measurable issues that I can show to any doctor to prove something is wrong!" but now they'll go behind that proof and say it's all in my head anyways (conscious or subconscious)?! *angry*

Mine and I have been seeing a couples therapist since January, and this is an issue that comes up every few visits. She keeps telling us to not focus on the physical side of the relationship (since everyone differs physically anyways!) but to think more about why we are together - what things we enjoy doing together (cuddling and talking counts just as much as more physically active stuff), what we value in the other person, how to focus on the intellectual and emotional sides of our relationship. If a therapist is something you can afford, it might be helpful; sometimes it's good to have a third party reiterate to the other person that "it is what it is" (my mantra), people differ, and that they're going to have to find ways to cope/deal if you're going to stay together (as painful as that is to consider)...

Diltiazem is the first anti-tachy med we tried, before the cardiologist realized that it was not just pure idiopathic atrial tachycardia and that betas would be a better plan (we initially avoided betas because they can be a problem for folks with mood disorders, although they would have been her first choice otherwise). It did lower my heart rate, but seemed to worsen my POTS somewhat - as though the HR were compensating for other issues, and without treating the overall POTS stuff lowering it wouldn't help. Obviously it's helped other folks, so worth considering too, since our POTS background seems fairly different (I'm more hyper, you're more autoimmune-ish?)...

Suddenly started for me at the start of October after I breathed in a lot of dust - but it hasn't changed since then. It was bad on propranolol (not too surprising!) but atenolol doesn't seem to cause it (also not surprising as atenolol - unlike propranolol - doesn't hit the beta-2 receptors that are involved in asthma). I have a history of asthma, so doctor prescribed Flovent (a steroid inhaler) and I started getting peak flow ratings. They were low, but improved after about a week; she also tested for a clot (a simple blood test, awesomely enough) since she was worried about pulmonary embolism. Right now I'm taking albuterol as needed - a few times a week, since the non-extertional shortness of breath isn't all the time but comes in episodes - and waiting to see the pulmonologist in three weeks (still on Flovent too). The albuterol helps a little, but not like it does with actual asthma, and it triggers my sympathetic nervous system really badly, so I try not to use it because I'm useless for the rest of the day if I have to. I'm still short of breath ~all the time while exercising - which of course triggers presyncope and spaciness! - but the resting shortness of breath is really uncomfortable. Grar. Focusing on slow breathing, and the pursed lips technique (http://my.clevelandclinic.org/disorders/chronic_obstructive_pulmonary_disease_copd/hic_pursed_lip_breathing.aspx) seemed to help me a bit.

My ANS neurologist found this - it was her first "hunh, that's weird" note during the standard neurological exam. She says in my case it's not Adie's pupil, though I'm not entirely sure why. Incorrect dilation (not light responsive) and/or uneven dilation doesn't seem to be entirely correlated with my frequent episodes of blurred vision, though partner and others have noticed both. The clonidine has mostly removed the blurriness, though I don't know if it's had any impact on the dilation. As far as I know in my case it's benign but annoying.

My nausea has mostly gone down to pre-POTS baseline, though arguably that's not normal either and was probably the earliest sign of autonomic issues (baseline = severe nausea ~1x/week, other milder episodes every few days that respond to eating goldfish and dramamine). I'm not sure why - part of it is probably less blood pooling in my legs (exercise helped with that, though it doesn't help everyone, and I'm wearing stockings again because of the vasodilating effects of clonidine and more frequent albuterol use) and therefore my abdomen, maybe? Also adding clonidine and/or methylphenidate (Ritalin) may have helped, though I'm really not sure. The Ritalin does kill my appetite during the day, so I tend to eat stuff that's easier on me anyways (soups, smoothies, plain carbs), which might be part of the issue.

Full after three bites sounds familiar... have you been tested for gastroparesis?

Itching is my most reliable indicator of blood pooling, but otherwise I don't tend to itch. I have some probable autonomic neuropathy (QSART but no biopsy), which might lead to the sensation; otherwise, not sure. Do you pool when it's cold?

Enh - I am probably going to go off of it in a few weeks (we're going to settle down on a dose of clonidine first before changing this). The signal:noise ratio is cruddy - how I feel on any given day doesn't necessarily correspond with whether I remembered to take my third dose or not, and the effects of the drug seem to be swamped out by my individual day-to-day variation.

Calcium channel blockers (specifically diltiazem) helped me stop the tachycardia, although they didn't do much for the other orthostatic symptoms (and seemed to slightly worsen my other symptoms, actually). My cardiologist originally prescribed them due to concerns about betas and mood disorders (since I'm bipolar), but betas are better for me. Something to look into?

I'm now taking clonidine - 0.05mg twice daily (we tried 0.1mg twice daily and it was a bit too much, so this is a bit of finessing). My BP pretty much never goes over 140/85, except during my TTT when it was 170/100 at the max. It's been helping a lot - I'm a lot calmer, don't have adrenaline rushes over little things, and even have more energy (but am sleepy a lot and am much more lightheaded - BP has been down to 85/45 at the lowest). So not just for folks with super-high BP. My ANS neurologist said that my POTS was a mix of hyperPOTS and pooling, but I haven't had the standing/lying norepinephrine drawn, so it's a tentative guess.

I found (when I was able to drive briefly) that having someone along was a huge help, especially if that someone could also safely drive. I figured that - unless I was on the highway - I could always pull over (or even stop in the middle of the road as long as nobody was right behind me!) and swap drivers quickly if I was really badly off.

Good luck! Like Kellysavedbygrace said, you might see if you can meet with the anesthesiologist ahead of time - it can't hurt to ask. They're the doc that will be managing the dangerous part (especially for POTSies), so to speak, since they will be monitoring your blood pressure, breathing, heart rate, etc. You might at least be able to give them POTS 101, print out some materials to give them, etc. Worth a shot!

Agree with MomtoGiuliana - my cardiologist said it was okay (she just pointed out that I could take a dose as needed, but I am on a maintenance dose too, so it may be different), but obviously it may depend on which beta blocker you take and how much and so on. Definitely ask, but it's an option for some folks.

Thanks! We're going to try a lower dose - 0.05mg twice daily - and see what happens. Still going to take the beta blocker too.

Managed to persuade my neurologist to try clonidine - taking 0.1mg twice daily. I also take 25mg of atenolol. It's been a week at this point.

The clonidine has so far been pretty awesome - I just *feel* better, it's hard to describe. If something startles me, I go "eek!" but I don't get an adrenaline rush afterwards, which is wonderful. I get home and I can cook dinner and even wash the dishes on weekends - again, awesome. The spaciness does seem to be somewhat lessened; I also discovered that - shockingly - things look like they move towards you when you walk forward! Amazing :^) Apparently I'd totally failed to notice that the spaciness came with losing track of three-dimensional motion. In general I'm just calmer, and not as tired. I wonder if the spaciness is related to sympathetic overactivity, given that the clonidine is helping?

It has downsides, though. I've got some muscle weakness - mostly just individual muscles either walking or holding/typing things - which is intermittant and not too severe. The big issues are blood pressure effects and sleepiness. Not fatigue per se - just sleepiness. I fall asleep sitting up at my desk, and almost fall asleep talking with someone one on one or doing other things that require me to be alert. Obviously not driving! It's weird, though - as long as I'm on my feet or moving around I'm better, it's just sleepiness when I'm sitting down. Unfortunately this combines with the low blood pressure to make me more spacey, just spacey in a different way - "sleepy plus lightheaded" spacey instead of "usual" spacey.

The blood pressure thing is funny. I normally range from "normal" BP (~110/70) to borderline hypertensive (140/85), but my TTT was all over the charts (62/50 to 170/100 and rapidly switching). With the clonidine plus atenolol, my BP was at 85/45 for a good part of the first day, which led to me almost going down with no warning at work. Standing up more slowly and avoiding picking things up off of the floor or bending over has helped some.

I know beta blockers are supposed to lower your BP (although at 25mg of atenolol it should be minor-ish). I didn't take my atenolol one day (from what I know, the danger is in stopping clonidine while on a beta, not vice versa), and although my heart rate was a bit more labile and I had palpitations, the blood pressure and lightheadedness were a bit better. A half-dose of atenolol was a bit better, although I was more lightheaded again. I'll ask my neuro on Monday about it.

Does anyone have any insight in terms of things to deal with the sleepiness? The Ritalin hasn't helped much. The blood pressure/heart rate tradeoff with the clonidine/beta blocker is also weird. I'm not sure how trivial it is to take smaller doses of clonidine - obviously something to run by the neurologist - but insights would be appreciated (I know that issie took lower doses of clonidine in the past). Do things like the sleepiness and lightheadedness go away at some point (or become less bad), and are they less bad with the patch instead of the twice-daily pill? Thanks!

(edit - could the additive/synergistic/whatever effects of the clonidine and the atenolol affect the sleepiness as well? I'm completely unsure. I've also had dry mouth and mild constipation on the clonidine, but nothing severe)

(double edit - gah, you can tell how with it I am today! - I hadn't worn my compression stockings for two months after my legs got pretty strong. I noticed myself pooling visibly, which almost never happens, after taking albuterol last week pre-clonidine, so I started wearing them, and am still taking my salt, both of which should be helping my BP)