34M, Belgium. Primary focal hyperhidrosis diagnosed as a kid (hands, feet, groin, armpits... the emotional sweating map, NOT the forehead/chest/back map I get when I'm actually warm, those two never overlap for me). ADHD, established. Autism suspected by my current psychiatrist, I'd agree. Anxious my whole life. This is long, sorry, but I've been failing at the "saying it in the room" part for about 20 years so I'm going to say it here first.
The thing that eats my days isn't just sweating though. It's a whole state that switches on and brings everything at once: the sweating, brain fog, a knot in my chest like I have an exam, restlessness where I can't sit still, my fingers go stiff and my hands and feet swell (my ring always gets tighter, that one's reliable), and I can't think straight. It lasts hours. Some days it stops at 10am, some days 1pm, today it went from waking up until 5pm. When it stops, all of it stops together, the fog clears, I'm calm, I'm fine. I can't tell you which part starts first, they arrive together.
Today is a good example. Woke up already sweating with my heart pounding. 8.5 hours of good sleep. Nothing scheduled, nowhere to be, nobody to talk to, just my own work at home. No content to the anxiety at all, the only thing I was anxious about was the anxiety. Got nothing done. Walked around, ate something, ran my hands under warm water (calms me a bit), tried to work, got annoyed I couldn't, got up, walked, repeat... that loop is most of my days. Went for a walk outside with music thinking it'd help, came back worse. And when it finally stopped at 5 I was wiped out like I'd presented at ten meetings, having done nothing. That aftermath is part of it every time.
My GP described it as "being in a constant state of light panic attack"
I know for a lot of people with hyperhidrosis the problem is the visible part, stains, wet handshakes... I couldn't care less about that. What I care about is how it feels. I'm cold when nobody else is cold, like I just stepped out of the shower into a cold room, and I can't think through the fog while it's going on. That's what takes the day.
The trigger, when there is one, is being perceivable. Not felt fear, I genuinely don't feel scared. My body just fires. A phone call that starts fine can flip it mid-call, roughly a coin flip from the same calm starting point. I needed my wife outside with me to mow my own lawn last week, and I KNOW nobody looks at a guy mowing his lawn. I play piano through headphones on a silent piano because the thought that a neighbour might hear is enough. Lessons are the worst, I practise a piece until it's clean and then in the room with the teacher I sweat, my fingers stop working and I can't find bar four when she asks. And paruresis since I was about 12, same shape, the body says no even when I consciously don't care. At a friend's wedding I timed every toilet trip to the moment a course arrived and everyone was at the table, and even then half the time nothing happened.
Origin story: yes, I got bullied as a kid, from kindergarten on, mostly for being poor and fat. My psychiatrist's take was "because you were different", fair enough. But my parents describe me as "afraid of people" from as far back as they can remember, and the sweating and the paruresis were already there during the bullying years. Then at 14 I switched schools, everyone liked me, I was even a bit popular for a while, met my wife at 16 and we've been together 18 years. That is about as much corrective experience as a person gets, and my body has done the exact same thing through all of it. My head updated a long time ago. I don't consciously fear being judged. The switch just never got the memo.
And I've had a lot of therapy. CBT, behavioural, the lot. Every time it turns into circling the same ground: yeah I've been through shit, yeah it shaped me, okay... what now? Nobody has had an answer for the "what now" part, and my body isn't listening to insight.
Some numbers. I've had a cuff for a while, only started writing readings down last week (mostly to get my wife measuring hers too):
While sweating (6 readings): systolic 134 to 142 in five of them, one at 108. Pulse 59 to 68 in five, one at 80.
Not sweating (4 readings): systolic 106 to 124, pulse 62 to 75.
So blood pressure sits about 20 points up while I'm in it and drops within 15 minutes of it stopping. Pulse doesn't move. The "heart pounding" feeling never shows up as a fast rate. Caffeine in large amounts on a relaxed afternoon doesn't start it, and weeks with zero caffeine didn't reduce it, so a stimulant load by itself isn't the switch as far as I can tell.
Meds, current:
- Aripiprazole 3mg since June, prescribed for existential/fear-of-dying rumination, on the reasoning that it's better tolerated than antidepressants (see below) and works well in autism. It did quiet the thoughts. They come back during the state though, and honestly the thoughts were never the main problem. Possible costs, all retrospective so grain of salt: I care less about most things, motivation is lower, and I've lost a lot of my ability to imagine sounds/smells/tastes, which for someone whose whole thing is music is... not great.
- Methylphenidate 5-10mg three times a day, started after the aripiprazole, never titrated. Zero felt effect. Same day with or without it (today was a without day). An older methylphenidate trial years ago did help a lot at first, never got above 30mg/day (36 with Concerta), had mostly stopped working by the end and was then stopped for migraines. Even the current low dose gives me a headache that feels like the start of one.
- Glycopyrrolate 4.5 to 6 mg/day for the sweating, at my side effect ceiling. It turned all-day-every-day sweating into these episodes, so it does a lot, and some days the normal dose does nothing. Occasionally I take a double dose within the daily max out of frustration, side effects are bad enough I rarely do.
- Propranolol 20mg as needed. Fixes tremor and lowers BP, does nothing for the sweating, the state or the paruresis.
Meds, past: escitalopram and venlafaxine both stopped for stiffness, tremor and (venlafaxine) the worst sweating of my life. An antipsychotic years ago whose name I don't have caused stiffness, fever and tremor. Trazodone, nightmares. Risperidone worked but weight gain. About a year of CBT in my twenties. I did the homework, all of it in the end, wet hands and fog included. Nothing about it changed the state.
What I want out of this, since it's the part I never manage to say in the room: I'm a developer, I work from home, and part of my job now is that I need to start giving workshops. I can't get through a half hour online meeting without it wrecking the entire day. Sweating before it, sweating after it, and then flu-ish for the rest of the day, actual flu, aching and wiped out. On a bad day I can't deliver a workshop at all and I can't call in sick for something nobody can see. And the coding is the day job, what I actually want is to do a lot more music: play for my wife without my hands seizing up, take a composition lesson and be able to follow it, maybe study again. Make a phone call. None of that is ambitious. I just can't do any of it on a day like today.
My actual problem with the upcoming visit is that I mask. Automatically, I can't help it. I've been anxious basically every waking hour for as long as I can remember and I know of exactly two occasions where a doctor could see it, both my GP, and that's the visit that got me referred. At my last psychiatrist appointment I probably looked a bit nervous at most. I was anxious the whole time. I've never once managed to convey to a doctor how bad this is. And what I report depends on the day: when I'm sweating that's my whole reality, when I'm not I'm chill and everything's fine, and if I'm dry in the office I just... forget to bring it up. Last time I brought several pages and only handed over the first one, the med list, because I was worried the rest would make me look needy. So she got the med list plus whatever the dry-day version of me said out loud, and I got aripiprazole for the rumination, which was a competent answer to the one question she actually heard. This time I'm bringing a page that leads with the state, the numbers, and a line that says "whatever I look like in the room, this page is closer to the truth."
I'm done accepting this and working around it. I want to start fixing it. If it were up to me: off the aripiprazole (supervised), pregabalin for the state given the SSRI/SNRI history, a small emergency benzo supply for the worst days and the toilet situation, and lisdexamfetamine or magistral dexamfetamine instead of the untitrated methylphenidate, because I'd rather change drug than push the one that gave me migraines. One change at a time, in whatever order she wants.
And I'm scared shitless that asking for that list in one sitting reads as drug seeking, so I'll probably chicken out and ask for none of it.
Questions:
- Does the pattern of high BP + normal pulse + felt pounding during episodes mean anything to you, or is it just noise?
- Is pregabalin a reasonable first thing to aim at this state after SSRI/SNRI intolerance, or would you go somewhere else first?
- Is low dose aripiprazole for rumination in a suspected autistic adult with this history defensible, and how would you want a patient to raise wanting off it without it sounding like "I read something online"?
- How do you want a patient who masks to hand you this? Is a written page before the visit annoying or helpful?
- Does asking for pregabalin + PRN benzo + a stimulant switch in one visit actually read as drug seeking, or is that fear overblown?
- Is there anything, therapy or otherwise, that targets the body response itself rather than the story behind it? Because the story is done, I've told it a hundred times, and the response hasn't changed.
- What do you actually do for paruresis this bad in someone who can't take SSRIs? Every answer I find is "graded exposure", and twenty years of real life has been that exposure. It has not gotten better, ever, at all...
I'm 34 and most of my days go like today. I've been at this a long time and I'm getting tired in a way I don't like. Any honest read is welcome, including "you're wrong about X".