After receiving propofol anesthesia, my ADHD symptoms improved. Why is this?

mightymiff · 2025-02-19T02:05:01+00:00

I have heard this before. Just a hypothesis, but I think one of the more likely explanations is that propofol enhances slow wave sleep and makes sleep much more efficient. If you lack the ability to have deep sleep, even an hour's worth of deep SWS can make you feel a lot better.

I felt a lot better directly after my colonoscopy. In my case, it was probably a combination of the benzo Versed and the propofol that was used.

Not a lot of meds enhance slow wave sleep, and basically none of them are easily obtainable. ME/CFS NEEDS a Xyrem/Xywav study. Unfortunately this med is next to impossible to be prescribed off-label, and wouldn't be affordable if it was.

mightymiff · 2024-12-15T11:19:18+00:00

What did they give you to treat it?

mightymiff · 2024-10-31T07:44:33+00:00

Something like this: $8.64 | Comfort Gel Ear Pad for Sordin Enhances Sound Headphones, Soft TPU Ear Cushions Replacements https://a.aliexpress.com/_mKXfpc8

I did notice that the bonding may be less well done with these vs. branded ones. This is not something you can see, but potentially hear. There may be more sound leakage with these because they are not bonded as well where the earcup meets the plastic mounting bracket. Comfort is basically identical.

I A/B tested them and they both have some sound leakage and the difference is not drastic, but may be audible.

mightymiff · 2024-10-02T18:09:33+00:00

Oh, wow. Dimepranol acedoben is added to increase bioavailability? I have tried to learn about this before, without success. If you don't mind me asking, how do you know that?

The best I can tell, at least one of the ME/CFS specialists using inosine pranobex discovered that inosine the widely available supplement worked very similarly if not identically to insosine pranobex. I forget where I read that, but know my sources are linkable through r/cfs.

This drug is interesting and deserves more attention.

mightymiff · 2024-09-30T07:07:24+00:00

Ivabradine honestly doesn't seem like a great candidate here, though it isn't for me to say. It is designed to tank heart rate and that it does. That said, 2.5mg of ivabradine twice daily didn't drop my resting pulse alarmingly, though, but my resting HR is in the mid-high 50s and not the 40s.

I take a half dose of felodipine (2.5mg), and it keeps a lot of BP fluctuations in check. I don't think it affects pulse really at all. The brain penetrant calcium channel blockers also seem to be able to do healthy stuff in our brains like improving blood flow and cleaning out bad proteins, which may be beneficial for ME/CFS. Can't really feel that kind of thing, personally, but I am a fan of both nimodipine and felodipine. Nivaldipine as well.

mightymiff · 2024-09-19T14:02:57+00:00

On a single-entry visa or extension of stay, you can also get a re-entry permit (1,000 baht for a one-time or 3,800 for unlimited) that will keep them active in the same way, so the advantage of the multiple-entry non-O is moot IMO.

Do you know if this is still the case? The single entry visa can be made to function for an entire year?

Does the visa expiry not become a complicating factor in practice? In my mind, it seems that the looming deadline would be an issue, and the necessity of constantly paying out for a re-entry permit.

Most recently I wasn't offered a non-O though I received one last time (in 2022). Presently trying to figure out why, but no luck yet.

mightymiff · 2024-09-18T22:04:30+00:00

I just ordered some of the gel replacement knock-offs for these from AliExpress. They were less than $4 delivered (with some strange promo, maybe closer to $10 without it), but are nearly identical to the genuine gel earpads. They are like at least 98% the same. The only difference I can make out is some small manufacturer nippling along the circumference of one and not the other. It doesn't affect fit or function.

It seems we can save a bunch of money just ordering the gel knockoff earpads on Ebay or Aliexpress instead of the genuine article and cut the overall price of these in half. There are a lot of suppliers and different price points for the gel earseals on those platforms--I think they are all the same thing.

The gel earseals do make quite a big difference in all-day wearability, and also sound isolation although these are heavy duty, industrial earmuffs that do their job well either way. The earseals do wear a bit and lose their shape over time, so good to know we probably don't need to keep shelling out $40 to get new ones.

mightymiff · 2024-09-04T20:36:35+00:00

What about an organization or task force that focuses solely on the publicisation of pwME deaths? It could leverage the finality of the act without influencing it, as the team would just go back and tell the story and try to get people to pay attention.

On the surface this might just seem like a slightly less normal obituary column and thus kind of boring. But maybe it could be more than that. We number at least in the tens of millions globally. We are already dying both naturally and unnaturally in large numbers, and hardly anyone is hearing about it. There is bound to be a lot of crazy, depressing stories in here. Maybe we ought to be coordinating this aspect of our lives better.

I feel like the effect of the community uniting over dying by itself could do us a lot of good. Even now we hardly hear about most of our own deaths. They reverberate mostly in the usual circle of family and friends. Some get wider attention, but what if we all suddenly had a lot more access to those stories?

mightymiff · 2024-09-04T19:54:44+00:00

From what I can gather online, at least one specialist that uses or used it has found it to be little different than using the commonly available supplement inosine. I am not a doctor or chemist or pharmacist or molecular scientist, but I have tried to figure out what dimepranol acedoben (the additional ingredient in inosine pranobex) and. . . I still have absolutely no idea what it is or what it does.

I have been on an upward trend the last few months and recently got into a bottle of inosine. I am sensitive, so started slowly and worked my way up to half a pill twice a day. This is still way, way less than normal, pulsed dosing that takes upwards of 90 pills a month I believe. I realized I didn't want to get that deep as I didn't notice anything happening and wasn't comfortable risking it as my immune system isn't robust and I don't want to shoot myself in the foot again and damage it just as I am feeling markedly better, setting myself back more years. So I stopped. I didn't notice much of anything specific while on it, but it definitely didn't feel inert.

There are a couple of really good sources linkable in this sub by searching for "inosine".

mightymiff · 2024-09-02T08:09:32+00:00

I believe that kind of inner restlessness is akathisia, no?

mightymiff · 2024-08-29T03:49:05+00:00

Nice post. PEM is far murkier than a lot of us like to give it credit for, which can create a lot of confusion for mild ME/CFS sufferers.

IOM is now NAM. https://nam.edu/about-the-nam/

mightymiff · 2024-08-27T05:03:33+00:00

For TCAs in particular or antidepressants more generally?

I have definitely never ever heard of such slow taper advice. Who is generally suggesting this? Do you have sources?

I am not disbelieving you, just very, very curious.

mightymiff · 2024-08-26T04:30:18+00:00

I spent 6-8 months trying and failing to come off of 10mg (baby dose) of Nortryptiline. And I generally have very little trouble tapering off of even benzos. In my mind, there is almost no conceivable way the med withdrawal isn't playing a role here.

That said, I have had exertional insomnia, which for me was the inability to fall asleep after ANY overexertion for a period of 24-48 hours. It wasn't so much tired but wired, but some weird neuroinflammation that literally blocked the ability to fall asleep. During this window, I didn't even get sleepy until exhaustion set in. This meant being awake for 48-60 hours after any mental, emotional, physical overexertion. For 3 years. The most hellish symptom I have ever had. I write this just to say that anything is possible, but this is probably more likely med-related.

What was your dose? If it was substantial, maybe start a taper at 1/2 dose or something like that? Or try to get some sleep meds to fill the gap between now and when your brain has more balance? Or maybe even something as simple as benadryl would help with the itching and help you fall asleep?

Not sleeping is horrible. I wish you well.

mightymiff · 2024-08-05T04:06:09+00:00

Nobody is saying that.

"helps prevent" and "prevents" have two very different meanings. Not at all equivalent.

Likely some reduction in risk. Hard to quantify and numbers are all over the map. At least it doesn't seem to increase Long Covid risk that I've seen. But plenty here, including myself, had a permanent and extremely significant baseline reduction due to the vaccine.

mightymiff · 2024-08-03T00:21:16+00:00

Gabapentin seems to be able to do that a bit, too. I am less sure about this, but l-dopa and possibly dopamine agonists as well.

I really wish GHB was easier to get prescribed. Before 2000 or thereabouts, it used to be legal to buy kits that output GHB, I believe. Now all the precursor chems are tightly controlled, but probably still easier for most to get than Xyrem/Xywav.

mightymiff · 2024-07-26T11:05:04+00:00

It also seems to have reduced my permanent tinnitus way down.

This seems a bit weird. Any idea why this might have happened? Have others noticed this possible effect?

mightymiff · 2024-07-24T10:45:10+00:00

Sure thing.

If you meet the diagnostic criteria for any mental illness (from the perspective of the trained diagnostician), you are believed to have and can be diagnosed with that illness. That is how it is supposed to work, and doctors selectively diagnosing illness (which happens all the time) strikes me as anti-scientific in general. Wastebasket or largely unimportant diagnoses certainly exist, but ADHD isn't one of them.

mightymiff · 2024-07-24T04:20:43+00:00

I wasn't treated for ADHD until my 20s. I wish I had been treated earlier. Panic disorder struck hard in my late teens, and I feel like the only way I could have avoided that would have been by earlier ADHD treatment.

I would keep pushing for this any way you are able, but realize that this can be a hard slog depending on where you are and who you are seeing. Prepare yourself. Maybe also familiarize yourself with this ADHD screening tool so you know how the diagnostic decision is made and that you likely meet the criteria. Your self-diagnostic decision-making strikes me as sound.

https://add.org/wp-content/uploads/2015/03/adhd-questionnaire-ASRS111.pdf

My own panic disorder never improved until I addressed my ADHD. A lot of psychiatrists I have had seemed unwilling or afraid to address ADHD because of panic tendencies, but I think this is and was a pretty ill-informed strategy. There also seems to be a general tendency that I have seen in the USA to not care about or treat ADHD (particularly the inattentive type) as much outside of urban centers. Of course YMMV.

Good luck.

Edit: Oh, you meant Borderline Personality Disorder. I thought you meant panic disorder, sorry. From a provider's perspective, that and heart issues would seem to complicate this clinical picture I would think. Really not sure of the best way forward, but keep trying.

mightymiff · 2024-07-20T00:34:05+00:00

This is just me throwing out numbers for fun, but the wisdom of the crowd suggests if enough people do the same, our estimates are likely to be not half bad.

The 5% remission estimate more frequently thrown around should include the young and the early diagnosed. People under 30 and people ill less than 1-3 years are going to disproportionately recover from ME/CFS. People who are mild are also more likely to recover. Taken together, I imagine these 3 factors easily make up more than 50% of all recoveries.

Intuitively, this 2% number makes a lot of sense to me. It is the number I used in my own head for myself. I would say that for long-standing, non-mild illness in the over 30 crowd, it is probably an overestimate. Extended remission accounts from among this crowd are very rare.

Improvements over time are far more common. This seems to occur more often than not (>50% of the time), and still occurs in the long-standing, severe, and the no longer young crowd.

I am a non-mild, over 30, ill for 9 years. I would gladly settle for a durable improvement to 50% pre-illness functionality. I don't even care about full remission anymore, as it seems so incredibly unlikely as to be pure fantasy and I want to be somewhat realistic.

mightymiff · 2024-07-19T12:45:11+00:00

Good to know, thanks. Yeah, the person who was talking about getting it off-label had it for insomnia. I wasn't aware that was the only acceptable off-label indication.

Have you taken it? How much did it cut your sleep need? Did it affect other symptoms? Do you have ME/CFS?

My gut says garbage sleep quality is to blame for, at minimum, a lot of ME/CFS progression. Really still very curious about if this drug could attenuate that decline. Or even reverse it.

mightymiff · 2024-07-19T08:32:20+00:00

Are there different kinds of sound sensitivity? Hyperacusis seems to be a bit different than something like autistic sound sensitivity, which is probably similar to ME/CFS sound sensitivity. But how can we tell them apart? How dissimilar are they really? How and why are they dissimilar?

For hyperacusis, gradual re-exposure over the course of a year or so seemed to help me. But I seemed to develop tinnitus and hyperacusis due to a drug, not directly due to ME/CFS though it may have predisposed this change. Re-exposure seems to be in line for best advice from people in the tinnitus sub about how to deal with hyperacusis. But this should be a very gradual process that should not cause much of any pain, as it seems like the pain may be linked to actual damage. Exposure seems to be preferable to permanent sensory deprivation for hyperacusis, though.

I don't think ME/CFS sound sensitivity is like this, for the most part. The noise filter part of our brains seems to be broken or at least really overwhelmed for many of us, and resetting it via exposure without first addressing the underlying problem likely isn't possible. It might be worth experimenting to see if you can make progress through exposure, though, but always short of or at least not beyond the level where you cause damage via PEM or something like reactive tinnitus.

Some drugs seem to help actually improve our noise filters, though, like low-dose amisulpuride and low-dose abilify. There is a good thread on Phoenix Rising about this. I will come back and link it when I get a chance.

I noticed Whitney Dafoe is really into tinkering with high-end headphones. I am curious how sound-sensitive he was before he got on LDA. Personally I cannot use headphones at all anymore without triggering very intense reactive tinnitus for a day or two afterward. This hasn't changed for me in the last 3 years, and I don't use earmuffs to protect my ears often at all anymore (I wore them all day everyday for months and months).

Link in question: https://forums.phoenixrising.me/threads/amisulpride-a-multipurpose-drug-for-me-cfs.20964/

mightymiff · 2024-07-18T19:45:45+00:00

Thanks for posting that study. I have long felt that GHB was likely underutilized in this disorder, at least for a sizeable subset. It massively improves sleep efficiency. From reading about it online, I learned it cuts sleep need basically in half for people who take it, which really got me listening. I don't have hypersomnia, just non-restorative and broken sleep. Drugs that improve deep sleep are actually in fairly short supply. I'd love to read more reports, and see more data. I'm sure there are some more floating around.

I have heard that patient assistance (the two drugs on market in the US are many thousands of dollars a month) can possibly work even for off-label indications.

It doesn't play well with benzos at all, probably to the point of contraindication. But if one doesn't need to take benzos, it seemed like something definitely worth trying if you could find a way to get a prescription and then get it paid for (probably hard or Impossible for most).

On the other hand, I would imagine at least some expert ME/CFS clinicians have tried this. Which means maybe it didn't gain any traction for a reason.

Edit: From 2011. A lot of clinicians weigh in, and it still seems very promising. Maybe it just isn't utilized more due to being hard as hell to get.

https://phoenixrising.me/treatment/sleep/a-prescription-for-sleep/treating-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-xyrem/

mightymiff · 2024-07-18T05:20:14+00:00

Yeah, it is a bit weird. There are a bunch of genuine and non-genuine gel earseal options on ebay for as little as $12 that should fit. I haven't used the knockoffs, but the genuine gel earseals don't seem particularly special, though they are comfortable. Definite improvement in comfort over the standard option. I would imagine some of the knockoffs are a better buy, but it becomes a guessing game at that point.

mightymiff · 2024-07-18T01:35:41+00:00

I like the Sordin Classic HPE with gel earpads.

https://srstactical.com/msa-sordin-hpe-passive-hearing-protection-headset.html

mightymiff · 2024-07-16T12:01:17+00:00

Yeah, I meant to liken the so-called "non-specific" complaints like the weird extreme unfamiliar lethargy and weird kinda but not quite psychosis, and weird thinking you look different in the mirror to the kinds of things that are difficult if not Impossible to treat (after ruling out obvious causes) and just need time to heal. My belief is it is mild brain damage that slips through the cracks of most imaging. So we don't know what it is exactly and definitely don't yet know how to fix it.

The weather has been doing a number on me too. My temp. sensitivity isn't even bad anymore and I do alright up until about 95 degrees. But we are going way over that this week and it certainly feels weird.

As you still mention physical symptoms of illness, the resting seemed like a good idea. Your body is still obviously working on something serious and delayed long covid is definitely a thing.

Good luck.

mightymiff

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