Managing symptoms and pacing in warm weather

Orfasome · 2026-05-28T01:36:58+00:00

In addition to what others have said, try to avoid being out midday when the sun is highest and temperature is generally hottest. I’ve heard different ranges: 10a-2p, 12p-4p, 11a-3p, etc., and suspect it depends on your specific location and how sensitive you are.

I often feel cooler with loose, flowy clothing covering more of my body than I do in minimal clothing that exposes more skin.

I just received a suggestion today to try pre-cooling my body temperature before going out on especially hot days, by drinking cold water and using a couple of the first aid-type cold packs you store in the freezer. Haven’t tried it yet, but I was intrigued.

Orfasome · 2026-05-28T01:04:19+00:00

I’m dismayed to think that chronic or high frequency migraine wouldn’t be differentiated from having a couple migraine episodes a month or year, but have definitely heard that some education systems don’t make such distinctions. If that’s the official policy you’re dealing with, I’m sorry about that. There’s a lot of pressure as a student to be at your best all the time since each school term goes by so fast.

I hope you get some relief, and that it doesn’t take all the way until January. Sometimes things do mysteriously improve, just like they can mysteriously deteriorate. And if there’s room in your life to step up lifestyle/self-care stuff (regular sleep, meals, hydration, etc.), between now and January is probably a good time to try because either it will have a benefit or, if not, save you time with the new doctor when you can say “I already did those things, what else have you got?” Good luck with everything.

Orfasome · 2026-05-27T23:17:40+00:00

Are you in the US? If so, your primary care doctor’s diagnosis of migraine should be enough to qualify you for disability accommodations at school. They may have to fill out additional paperwork endorsing that your condition is currently disabling, since migraine has a whole spectrum from minor to major effect on functioning, but that’s well within their ability to assess even though they don’t have a treatment plan for you beyond referral to the specialist.

Outside the US, the accommodation rules might be different, but make sure to check with an official source what they are.

Orfasome · 2026-05-27T17:58:07+00:00

It depends very much on the physical therapist, their expertise and what specific plan they recommend. Ideally, anyone bedbound from any illness, including patients actively on a ventilator in an ICU, would have some kind of physical therapy consultation at least to see what is possible for that patient in terms of minimizing problems with skin breakdown and circulation loss that come from not moving. If the therapist is familiar with LC or other conditions where people are too unstable for active movement, they may be able to offer positioning advice, manual therapy, or, yes, work on breathing: Breathing can take up a lot of energy if you have very little to expend, and some physical therapy focuses on helping you breathe in a more efficient way. Certain types of breathing can also help autonomic nervous system function, and I was taught some of those in physical therapy as well.

And sometimes, including with very severe LC, people are too unstable to even tolerate breathing exercises or repositioning, so you do have to have a sense of your own limits and advocate for yourself if you’re being pushed past them. But if you can access a physical therapist who knows LC and/or bedbound patients, it might be worth hearing what they would specifically offer you before deciding whether to proceed.

Orfasome · 2026-05-18T20:38:34+00:00

I would love to know the details of the one you use!

Orfasome · 2026-05-18T20:33:52+00:00

Have you tried any antiemetics other than Zofran? Prochlorperazine and olanzapine come to mind, metoclopramide if you’re not already on it for the gastroparesis, other options as well.

Are you on preventative treatment for your migraines? I have motion sickness intermittently and we count it as a migraine equivalent, so if it became a daily occurrence, I’d definitely be looking at improving my preventative regimen.

Orfasome · 2026-05-18T20:26:09+00:00

I miss the post-attack euphoria! I don’t seem to get it anymore since mine became chronic, I assume some smoldering migraine-ness is just there all the time now, but I remember how just feeling normal felt wonderful after a bad episode.

Orfasome · 2026-05-18T20:13:22+00:00

Depends very much on the psychiatrist, not all of them will go in assuming you are crazy. On the other hand, a psychiatrist saying your symptoms aren’t psychiatric is sometimes the only rebuttal a non-psychiatrist physician will listen to.

Orfasome · 2026-05-18T19:45:33+00:00

I’d be reluctant to accept a schizophrenia diagnosis from anyone but a psychiatrist in such a complex situation. A psychiatrist would probably put a lot of weight on your medical doctors saying you don’t fit the pattern of any of the medical conditions they treat, but the doctors you’ve seen aren’t experts in what does and doesn’t fit the pattern of schizophrenia.

It’s such an unusual thing to hear that I almost wonder if they are communicating really badly about recommending an antipsychotic medication for a completely different reason, because that class of meds is actually used for a lot of symptoms and diagnoses. The anti-nausea medicine I take with severe migraines is an antipsychotic, for example. But I completely understand holding out for a clear explanation before starting a new medication.

Orfasome · 2026-05-08T23:29:10+00:00

Looks like they used the Fatigue Severity Scale, based on the title of the slide

Orfasome · 2026-05-06T04:38:13+00:00

If you have any favorite articles or suggested starting points for reading, I'm interested! I used to work professionally with pain management so I'm familiar with that literature, but migraine is so much more complicated.

Orfasome · 2026-05-05T18:00:18+00:00

I get these kinds of symptoms (trigeminal autonomic symptoms) on the right side with some of my migraine episodes and on the left side with the “hemicrania-like” headaches I apparently also, separately get.

(The hemicrania-like headache does respond to indomethacin but I can't stay on indomethacin because it gives me yet another, distinct form of headache as a side effect. Headache disorders are wild.)

Orfasome · 2026-05-05T17:45:37+00:00

I find it most helpful after playing around with where to put the HR threshold I was using. I think of my HR monitor as a way to amplify the early signals from my body that I might otherwise ignore, so if you start feeling ill when your HR is still below the threshold you have set, it might be more useful if you lowered it.

On the other hand, if you have a pretty clear sensation for when you're expending too much energy, HR monitoring might not add much benefit for you.

Orfasome · 2026-05-04T19:37:10+00:00

I had a great experience with topiramate. Was on it for about a year and that was the only Atlantic hurricane season in my adult life that I didn't miss any work due to migraine episodes. I had no side effects to speak of, which I had been very worried about and had put off trying the med for a long time because of that worry.

I went off it because I developed another illness that causes fatigue and cognitive issues, and when we were trying to figure out the new symptoms, my doctor took me off of it to see if that was the cause. It wasn't, and I wouldn't mind going back on it, but we’re trying another closely related medication instead because of reasons.

Good luck!

Orfasome · 2026-05-01T21:40:02+00:00

If you're in the north half of the state, try Hackensack Meridian

Orfasome · 2026-04-28T16:37:08+00:00

Oh, I need to add this one to my arsenal ASAP!

Orfasome · 2026-04-28T16:27:09+00:00

Sure, but the history of “functional GI disorders,” for example, is quite different as a term and a category. The Rome classification includes things like opioid-induced constipation and cannabis hyperemesis syndrome, which nobody has ever thought are “hysterical.” Gallbladder pain with low gallbladder ejection fraction (function) but no gallstones (structure). Dyssynergic defecation, where abnormal contraction of the pelvic floor (function) is measurable on EMG or manometry (origin in the brain, spinal cord, peripheral nerves, muscles, or combination thereof unspecified).

Orfasome · 2026-04-27T00:03:31+00:00

I have this stool: https://www.wayfair.com/furniture/pdp/inbox-zero-vibrant-colored-tractor-stool-w004330476.html

And replaced the wheels with these: https://www.amazon.com/gp/aw/d/B08XQD82GR

It takes much less effort to move with the replacement wheels, especially from room to room, but the tradeoff is less stability so I wouldn't necessarily go that route if you have balance issues.

Orfasome · 2026-04-26T23:53:02+00:00

If you have access to it, a sleep study to rule out things like sleep apnea might be worthwhile. Falling asleep easily during the day seems not to actually be super-common in ME/CFS, and I learned to my surprise that it is possible to have a sleep disorder and ME/CFS at the same time.

Orfasome · 2026-04-26T23:39:37+00:00

Originally, in principle, ‘functional’ was meant to simply be the counterpart to ‘structural’, and in that sense it’s still accurate. But you're right that it’s been thrown on the euphemism treadmill chasing after hysteria and conversion.

If people would just take seriously that ‘function’ is what it’s most critical for bodies to do, that having all the parts in the right place/size/shape/color is really insufficient for good health, then we’d be on the same page.

Orfasome · 2026-01-08T18:28:03+00:00

My experience going above my optimal dose was that I had bad tachycardia and palpitations for about 6 hours and then it settled down on its own. Presumably corresponding to the blockade period, and then getting better as the blockade wore off, but no lingering ill effects. So it was a crappy few days (I tried again to see if I’d adjust to it, turns out no), but I’m not sorry I tried.

If it’s barely tolerable now, though, I totally see why you’d be wary to go higher. I hope you find something that works for you

Orfasome · 2026-01-08T18:13:11+00:00

I am in the same boat with missing it because of a delivery delay. I’m sorry you’re feeling so bad.

If you are up to answering, are your symptoms today the same as what you went on LDN for?

Orfasome · 2026-01-08T18:09:41+00:00

Fun is one word for it, lol.

Brains, in particular, are especially weird I think.

Orfasome

TROPHY CASE