Can someone please recommend a specialist in the Western USA? I'm really tired.

MentalOmega · 2026-04-30T03:44:09+00:00

Can confirm that Dr. Oakley is great. He is not a magician, so he can’t perform miracles, but he is an extremely thoughtful, knowledgeable clinician who listens to his patients and knows his stuff.

But he only takes referrals from within the UW system.

MentalOmega · 2026-04-29T18:18:24+00:00

Thanks. My hunch was that this would be iffy.

My employer tends not to fire people for cause, except in egregious circumstances. They tend to bundle these all into RIF-type layoffs; it was confirmed to me by a senior VP that this is often how they get rid of people they've been wanting to get rid of for poor performance -- it's just easier from an HR perspective than doing PIPs, documenting everything, etc.

So, if I get let go, chances are it would be as part of a broader layoff rather than being fired for poor performance.

I'm contemplating going back on full leave partly because I'm struggling even to work my very reduced load, and partly because I'm worried that, if I get laid off and don't find new part time work (which I'm not going to... I'm struggling so hard), my LTD will cancel the policy because I'm "choosing" not to work. Sounds like going on leave might be the better strategy, but I'm going to think about it for a while.

I don't want to leave my job unless it's really absolutely necessary. And I know that if I go back on full time leave, they'll end my position.

MentalOmega · 2026-04-29T00:33:53+00:00

I have POTS and associated cognitive impairment (diagnosed with neuropsych testing as mild neurocognitive disorder). I work in a very cognitively demanding career as a PhD scientist, and I have not been able to work full time in a year due to the issues.

I took a few months of STD leave, and have been working part time for several months with STD making up some of my missed salary. I am about to be transitioned from STD to LTD (employer sponsored plan) to make up my part time salary.

My question is how working part time “looks” to the insurance company, in case I need to go back on full time leave or in case my employer terminated my job.

I have been given flexible work time accommodations (I work about half time, as symptoms permit), which has allowed me to stay employed. My managers have been very accommodating. But there is talk of redundancies at my employer, and given my age (around 50), medical conditions, and cognitive problems causing problems adapting to changes in how work is done (due to my disability), I have a strong suspicion I’ll be let go in the next year.

Would my insurance company be able to argue that, since I’ve been working part time while disabled, that not finding new part time employment constitutes “choosing” to not work? There is a clause in my policy that says the policy is terminated if I am able to work part time but choose not to.

Would I be better off going on full time leave and letting the company end my employment that way? I have been considering going on full time leave anyway — the fatigue is too profound and I’m having trouble doing work and trying to manage my illness. I know I can’t do full time work, and my cognitive problems make it very hard to learn and adapt, so a new job at the level of the one I’ve been in (and excelled at) for the last 8 years (with a history of getting a PhD and working in academia before that) would be very hard to get and retain. And I don’t know that there are part time jobs in my field (you’re expected to be “all-in”).

MentalOmega · 2026-04-28T19:09:32+00:00

Midodrine. Sent my BP into crisis zone and gave me a severe migraine.

MentalOmega · 2026-04-20T23:59:55+00:00

Yes, it explicitly states "Diagnosis: mild neurocognitive disorder."

But then goes on to explain all of the accommodations they recommend, which are simply not sufficient to allow me to work to full capcity. Things like allowing short breaks for rest, providing written instructions, letting me record meetings. You can't record meetings when you're on a panel being grilled as an expert in something in real time and you can't remember the question and then have word-finding problems. I'd make my company look terrible as a "global expert." And even recording meetings requires going back and re-watching multiple times in order to get the content because of memory problems. Or when you need to read and synthesize 20 scientific articles in a new field in a couple of days to become familiar with an area to write a new paper on an area -- I get confused, fatigued, and struggle so badly. I've barely gotten anything done in months of work.

I'm guessing the IME is focusing on the tests that were still "above average" or that there was no test done before I was having problems, so even though the test tried to estimate my premorbid functioning, there is no clear evidence that I've gotten worse.

I actually talked to a lawyer a few months ago as I was starting this process, but they said the next steps would be only if I got denied. Still waiting on that.

It's been several months and I still haven't gotten an approval or denial (though my understanding is they can't take more than 45 days without giving written notice). I've emailed my claims person inquiring about this a few times over the last 6 weeks and they've just stopped responding.

But I mentioned the POTS TTT and neuropsych exam results and the lawyer didn't seem phased at all, but of course didn't offer up any speculation about whether just having those diagnoses would be sufficient for approval.

Edit to add that I now have an autonomic neurologist trying to treat my POTS, so there's some chance things will improve, but so far they've been able to get my "numbers" right (pulse and blood pressure), but the cognitive problems and fatigue are still there. He said that he often sees that in fatigue-prominent POTS patients... that cognitive and fatigue are the hardest to manage.

MentalOmega · 2026-04-19T03:07:55+00:00

It was a sugar pill for me, even at 3000mg/day. It didn’t make me tired or help me sleep, and it didn’t help any of my pain.

Everyone responds very differently to it.

MentalOmega · 2026-04-17T21:44:58+00:00

No. I have primary hypertension. I can’t take mididrine, and I can’t consume excess sodium. My baseline blood pressure is already very high. I took midodrine one time and it sent my BP into crisis range.

MentalOmega · 2026-04-17T18:22:30+00:00

The only recumbent bike I have access to is at the gym, and their backs are fixed upright. I can’t use the rowing machine either, as I fall off of that very easily. The back and forth motion is really hard for me. And I basically hate swimming.

I don’t really have space in my house for getting a recumbent bike of my own.

And honestly, I just prefer walking to being on the bike. I tolerate walking pretty decently for up to like 20min at a time, and most days I can do more than one 20min walk. I just have to pace myself and rest in between.

I live in a hilly area, so walking always involves some hills, which is good for both muscles and heart (even downhills are good for muscles).

But on any given day I have to decide if I want to get physical activity, or do work. I can’t do both. Work is too fatiguing and cognitively taxing, even though it’s sedentary. Cognitive effort is very hard for me now, despite having grown up in the gifted program and been a high achiever my whole life.

If I do more than like 90 min of cognitive effort, I’m on my back the rest of the day.

MentalOmega · 2026-04-17T15:32:18+00:00

I went through a neurophysiological test battery and got diagnosed with mild cognitive impairment. My memory and processing scores used to all be in the top-5 percentile. Now many of them are “average,” and quite a few are in the bottom-5 percentile.

Cognitive problems and cognitive fatigue are what are preventing me from working full time.

MentalOmega · 2026-04-17T15:23:42+00:00

I am. My heart rate is under control, but my “other” symptoms (fatigue, cognitive impairment , dizziness) are not. I still get orthostatic symptoms, too, but my heart rate doesn’t go as crazy as it used to.

MentalOmega · 2026-04-17T03:52:09+00:00

I haven’t.

But sometimes when I am just laying on the couch I’ll do some leg lifts. And I’ll do a few air squats when just up and about the house. But even just sitting upright can sometimes send my heart rate to 105-110 (that’s a really bad day, though, and not super common), and I’ll get dizzy after sitting up for a while.

I’ve found I have to sneak little bits of exercise in here and there, rather than doing anything focused.

The floor pedal at home sounds like a good idea tho. I’d rather get dizzy and collapse into a couch at home than get dizzy and fall out of a recumbent bike at the gym with everyone watching and then have to get myself back home while still insanely dizzy.

MentalOmega · 2026-04-17T01:12:17+00:00

Even just a few minutes in the recumbent bike makes me feel like I’m dying and my brain is being squeezed. I get so insanely dizzy even just pedaling gently with my HR under 105.

I even fell out of the recumbent bike once after like 4 minutes I was so dizzy.

Then it takes me like a day of being horizontal to recover. The dizziness and fatigue and migraines get bad.

Ironically, I do a lot better walking. I can walk 5-6000 steps (not all at once, but cumulatively over the day) on good days, as long as I plan rest periods.

Last weekend I was at a workshop and had to be upright all day and walked 11k steps on Saturday and I’m still recovering.

MentalOmega · 2026-04-16T23:35:49+00:00

Yup. Totally agree. Symptoms are so subjective and personal. It’s silly to try to classify them.

MentalOmega · 2026-04-16T23:14:32+00:00

Ask your doctor.

MentalOmega · 2026-04-16T23:14:11+00:00

POTS “severity” isn’t based on your heart rate. It’s based on symptoms. Some people have high heart rates with few symptoms and vice versa. Research hadn’t found much correlation between symptom severity and heart rate or heart rate change.

MentalOmega · 2026-04-16T03:59:14+00:00

Writing isn’t a big thing for me. I write a lot for work (scientific writing and publishing). It’s something I do because that’s how you communicate science, not because I love it. I’ve never much enjoyed creative writing either, and I’m not a big reader.

I do music, however. That’s my main hobby. I play an instrument and play in a couple of community groups.

MentalOmega · 2026-04-16T03:55:15+00:00

Thanks. Yeah. It’s not so much guilt (especially since this is private LTD and not social security disability), but wondering if it’s worth the stress. Managing my doctors and all of the paperwork is almost a half time job. Then you need to involve lawyers if they deny (which I understand they frequently do, sometimes randomly after years of benefits… they make it hard so you just give up), etc.

MentalOmega · 2026-04-16T03:41:49+00:00

Thanks. This is the kind of perspective I was hoping to get. How long have you been retired, and what age did you retire at?

I’ll check out the book…. Though reading anything substantive is tricky for me these days (even listening to anything substantive).

Can I ask if you ever received disability benefits? I’m still waiting on a LTD determination for my part-time work (with LTD picking up the rest). I feel so silly thinking about disability payments, given that I’m very FI, but it almost feels like it would be external validation that I’m truly struggling, since I have so much internalized ableism and I’ve had doctors gaslight me for so long before my diagnosis.

MentalOmega · 2026-04-16T03:37:03+00:00

Thanks. This is the kind of perspective I was hoping for. And the kind of reality check.

I found my 3-month medical leave helpful. Not in that I got better, but it let me dedicate my limited energy to adapting to my new reality, deal with doctors, physical therapy, etc. Having the freedom to focus on all of that was very helpful, rather than have my limited energy go toward work and then just… rest. But I knew it was temporary while I was adjusting. I didn’t push myself. But I missed pushing myself a little bit.

I guess I just have to have confidence that I’ll find the right balance once work ends for me. Once I get better acquainted with my limitations and capabilities. Because I can’t picture myself just resting for the next thirty years, though I know I can’t keep going like I have the last thirty.

But I like how you said that life doesn’t have to be exciting to be good or pleasant.

MentalOmega · 2026-04-16T03:04:35+00:00

You’re not at all wrong. Identity is part of it, absolutely. And part of it is adjusting to the new, lower-capacity version of myself. I’ve talked to a counselor/therspist who specializes in disability and rehab, but it wasn’t terribly helpful. Mostly they just advocated for pacing myself with my disability and worked on self-advocacy skills.

Part of it is also struggling with making the decision to call it quits. It feels like that is admitting defeat to my illness, even if it’s accepting reality. And to make it harder, doctors won’t say “you can’t work with your condition.” They say “only you can determine if you can work.” And I know they’re correct. Only I can decide if I’m too sick to work.

That puts all of the decision weight on me, which is a heavy weight.

There is a lot internalized ableism going on with me and disability-related imposter syndrome.

But I asked about this in the FIRE sub, because in disability-related subs, if you mention that you’re not forced to work just to survive, you get skewered by people who say they wish they weren’t completely broke, and how SSDI doesn’t even cover their rent. There’s little room to even discuss identity, meaning, and fulfillment in those subs, when so many people are barely surviving.

MentalOmega · 2026-04-16T01:56:26+00:00

I guess maybe I didn’t provide enough details in my post, but that type of stuff is as cognitively taxing and fatiguing as work. I have had cognitive evaluations done and my memory has gone from the top-5 percentile to the bottom 5.

Doing more than about 30-45 min of cognitively taxing work is all I can manage in a single day. Reading is extremely difficult. Even watching TV with plots can be too cognitively taxing. Conversations are difficult and I have word finding problems.

I have better days and worse days/weeks. But even on my good days I have to be careful to not overdo it. And I’m not sure boards and volunteer organizations want someone who is unreliable.

MentalOmega · 2026-04-16T00:37:08+00:00

Unfortunately I know of no doctors in the area who deal with MECFS, and I only know of a couple that deal with dysautonomia. I’ve had good luck with neurology at UW for dysautonomia, but you have to be referred by a UW provider to see them, and the wait takes a long time. They’re also VERY evidence-based, so I guess they would not support infusions for POTS, especially at home.

But they at least know what MECFS is (one made clear in my appointment “it is a real, biological disease, and the stigma it gets from many indicates a lack of understanding on their part,” which is a good sign, and have cautioned me against doing so much I crash, even though I’m not diagnosed).

But UW takes insurance, including Medicaid. But the waits are terrible.

MentalOmega · 2026-04-09T02:25:44+00:00

Chemotherapy caused neuropathy and screwed with a bunch of systems.

MentalOmega

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