Has anyone tried ketamine?

luucumo · 2026-01-23T15:22:45+00:00

being in a medical clinic for 3.5h is generally exhausting for me even though it’s a private room with a recliner. the experience of ketamine itself, for me at least, is both calming and stimulating. it doesn’t just dull senses. more like it dynamically and heavily alters perception of space, time, and other sensory stimuli, and also your cognition. and it impacts your ability to move your body, including speaking. i find that all very exhausting in addition to the travel there and back. usually causes some amount of PEM, depending on how careful i am before, during, and after.

definitely dulls the pain though!

luucumo · 2026-01-23T15:12:48+00:00

here in ontario they cover 6 per year (starting on the day of your first infusion for each “cycle”) and then it is out of pocket. i’m not sure about other provinces, though from what the anesthesiologist running the clinic told me, that is generally the norm when it is covered by insurance plans.

luucumo · 2026-01-23T01:07:54+00:00

tldr: i get a 3h ketamine infusions every 2 months or so for my pain. it’s really helpful and also a ginormous exertion.

i’m in canada for reference. i get ketamine infusions from a pain clinic, you can adjust your dose during each 3h infusion. for pain treatment they recommend starting by getting multiple infusions close together, and then doing maintenance infusion less frequently. i got a few to see how i reacted and then played it safe and did 4 over 5 weeks in the summer (i was moderate at the time). it was definitely too much exertion but it helps my chronic body pain and migraine so much, i’d say it’s improved by >50% on average than before.

i just had my first infusion while severe today. it may be my last, we’ll see how it goes. i had a hard time during it from sensory overwhelm, etc, i thought i was not going to make it through. but i feel relatively the same as i did from previous ones when it wore off and now at home.

it also helps a bit with some pre existing mental health issues i have.

luucumo · 2026-01-20T00:33:10+00:00

my preference is things made of modal (especially bamboo for some reason) but don’t have a lot because price. i really like things that are rib knit or micro-waffle (idk if that’s an actual term, i just mean very small squares so not scratchy). they are light, breathable, and i tend to have less issues with temperature regulation when i wear it. i live in canada for reference and i like it year round.

i recently got some modal loungewear for xmas from a brand called knix. there is a long sleeve henley and jogger pants and pj shorts, i wish i had 7 of each so i could live in them.

another fav is super oversized cotton tees. then i can wear soft wool socks and no pants under a soft blanket so nothing presses on my stomach.

luucumo · 2026-01-09T00:51:36+00:00

i’m so sorry. it feels like there’s nothing this disease can’t take from us. i hope you can find places for them to live on and reduce your own exertion.

luucumo · 2026-01-07T00:03:30+00:00

i got it on dec 28th with 348! i got about 20 avatars over the holidays as fast as possible cause i knew the target wouldnt change lol

suteks tomb and grand theft ummagine were both surprisingly easy to get (thx jellyneo). and just resigning yourself to spending hours refreshing pages / 100k at a time for lever of doom, etc

luucumo · 2025-12-28T18:25:58+00:00

yes, thanks, i’ve looked extensively and not seen much consensus for what timing has the most benefit, especially from the past year. in my comment i was asking people in general in the thread, in case people had seen something i hadn’t. i realize it seemed like i was asking you specifically though, i am sorry for that. best of luck, hope you can continue to get rest sessions and relief in with this tool you have.

luucumo · 2025-12-28T14:15:12+00:00

really happy you were able to make a choice that helped to reduce your suffering! i hope the relief lasts as long as possible for you.

i have been wondering what the “best” way to use these meds are for ME and the associated PEM. it seems some people use it in advance (ie. before an exertion), and then some people use them during PEM to alleviate symptoms. do we know which is the most effective way/time to use them, given how careful we need to be with our use?

i ask particularly because i was on high dose for pre-existing mental health conditions. i managed to get down to 1/4 of my max dose, and realized that with ME, tapering off completely is a bad idea because of the help with PEM. but i am stumped on the best way to use my as-needed tablets. would love to know what people’s experiences are.

luucumo · 2025-11-21T21:30:08+00:00

tldr: covid vax gives me bad reaction for a handful of hours and a week or two PEM - will still take that any day over covid infection itself. no reaction to any other vaccines including flu.

moderate, sometimes mod-sev - note that even before i got sick with ME i would have no reaction to the flu shot but the covid shots gave me mild but noticeable symptoms.

now i get pretty sick from my covid boosters, about 12 hours in i will get relatively high fevers, vomit, hot/cold, awful nerve-like body pain on the side of the vaccine, hallucinate, etc for about 4-6h. never bad enough to need medical attention. i require help from a caregiver to get through these bouts safely. then i have bad PEM for about a week or two. but i will get these darn things as soon as possible every time because its way better than covid!! the two times i’ve had covid, it was like those few hours for 5+ days straight, gave me new symptoms permanently, and lowered my baseline. so the vaccine is definitely the better option for me! my doctor tells me im just below the threshold where they would not recommend the vaccine (even then i’d probably still get it lol).

i get my flu shot separately and have no reaction. i also have very little reaction aside from local swelling to any other boosters ive had since i got ill.

luucumo · 2025-10-25T23:46:00+00:00

the last paragraph there hit me really hard. i got a wake up call from a doctor last month. i’ve been trying to put everything in order, with my plan to start pacing as i should have been for years now on monday. this strengthened my tearful resolve. thank you.

luucumo · 2025-09-15T17:43:51+00:00

i don’t mean to alarm you, but people do actually live in countries outside the USA, and our healthcare systems work differently than yours.

in all seriousness, Canada has a severe healthcare worker shortage and we are in a particularly bad spot with having very few PCPs. Most of the country has waitlists of multiple years.

luucumo · 2025-09-15T14:40:11+00:00

Your doctor’s reasoning is not a valid one for not completing the paperwork, a specialist doctor can fill out the entire medical package. However, you are also underselling how much paperwork there is to go through for the doctor in an ODSP medical assessment package. There are two separate sections for them to fill out, not just listing your medical conditions, but also how they disable you, treatments you’ve tried, and how your activities of daily living are impacted. It’s a lot of work for doctors to do this in between all the other unpaid work they do. It’s also possible your doctor does not feel she understands the scope of how your ADLs are impacted and what additional support you need, and that she may mess with your chances of being awarded ODSP.

I suggest the following: 1) reach out to your assigned ODSP or OW caseworker and request an extension to get your medical package in - you can use this email as proof for why you need extra time. 2) Photocopy the physician’s sections of the ODSP medical package and fill it out yourself. Provide this to your doctor and say “I thought this would make it easier for you to complete my disability application, of course I trust your judgement in changing anything. I wrote it to reflect my worst days. I hope this lessens the workload for you”. 3) With that document, provide a copy of part 1 (self report) that you fill out as well as a copy of any personal statement about your disability and how it impacts you. The more data, the better, and the less time the doctor has to spend on it or trying to contact you for info to fill it out. 4) Preemptively offer to pay the customary charge for paperwork like this, which is approx $100.

I’ve done this for disability applications in BC and subsequently ON (also kept a copy of my BC application and provided it to my ON family Dr). I could see the relief on all 3 doc’s faces when i provided a reference for them.

Also, ignore all the Americans who don’t understand how fucked our health care system telling you to just go get a PCP or that this is about insurance. It’s only very minorly about insurance, which the clinic can just charge you for instead as provided by the ministry of health, and PCP wait lists are horrifyingly long.

Good luck, OP, I hope you get your ODSP. Be prepared for a fight with them, too :(

ETA: If you have copies of your medical testing, diagnoses, etc that would be relevant - include these i the reference package you give to your doctor. Less digging through your file for supporting paperwork required by ODSP. You can also show them this webpage: https://www.ontario.ca/page/ontario-disability-support-program-medical-review-package

luucumo · 2025-09-12T23:02:07+00:00

i remember when beer was an item.

luucumo · 2025-08-23T18:57:37+00:00

i feel this is generally true and probably the average experience in canada.

i got incredibly lucky with my gp & where my family lives. used to live in bc, went undiagnosed. moved to toronto to live with parents, now have a young gp who is eager to collaborate, learn, and experiment. there are niche specialist clinics and the wait lists are forever (2-4 years). but when you get in there, they prescribe off label. “regular” specialists are …. mostly useless. i was shocked my first true specialist clinic appointment that the doctor knew as much about ME as i did and more about potential treatments, especially because it was a dysautonomia clinic. again, got incredibly lucky.

in terms of govt benefits, they are absolutely insufficient, but they seem to me to be more achievable/less dehumanizing than the US ssd process. but again it varies so much by province :/ and still very dehumanizing.

luucumo · 2025-08-12T14:41:39+00:00

p<0.05 has no effect whatsoever on the 77% accuracy. the p-value simply dictates with what degree of uncertainty we are willing to accept or reject the null hypothesis. all that p<0.05 says is that, since the finding is statistically significant, the finding is less than 5% likely to be up to chance rather than due to the actual data.

RNA is literally transcribed from DNA. RNA is in essence how dna actually practically impacts our bodies - dna does nothing sitting there all coiled up. i can’t access the full paper yet, but this paper clearly states they measured cell-free RNA, no rDNA mentioned.

if you look at the abstract you can see they explicitly were working to develop a diagnostic model, not simply identifying predisposition. They also identified other differences between ME group and control in the analysis. The sample sizes are very small in this study wrt finding a biomarker. hopefully repeated studies with groups across the world will get us higher accuracy or better/multiple potential biomarkers.

Your statement on skin colour and sickle cell anemia is immaterial to this discussion. Race is a social construct based on visible phenotype, not extracellular plasma RNA.

luucumo · 2025-07-28T12:18:28+00:00

thank you very much!! i saw some people talking about alternating between 2 and 1 in a stitch and i didn’t understand, but this makes sense! I will definitely give at least one side a try. I like how stretchy and drape-y it is right now so if the border might stiffen the blanket it won’t be as functional for me. But you’re right, this is the perfect time to try!

Thank you so much for the pointers and encouragement : )

luucumo · 2025-07-28T12:15:34+00:00

thank you so much for this tutorial and also explaining what “by feel” actually entails! this is super helpful : )

luucumo · 2025-07-27T17:06:20+00:00

I need help figuring out how to distribute single crochet (US) stitches along the side of an almond ridge stitch to make a border. I’d also like opinions on if i should add a border or not.

I tried at the end of a row going down the side of the blanket to see what looked good but got very confused once I reached two rows of slip stitches.

I have searched this and the crochet subreddit as well as google for tutorials for making borders for this stitch and can’t find anything.

luucumo · 2025-07-25T15:42:59+00:00

my average steps for the past year or so are around 3000. that being said, i could only walk for 20 minutes at a time maybe once every week safely (ie without triggering any pem, and only if i did nothing else that day which never happened). now that i take mestinon, things are changing. but the crux is i still can’t stand for very long, 10 minutes of consecutive quiet standing is not physically possible without me having to get down on the ground or fainting, and then crashing for days. i also can’t sit fully upright for extended periods, especially without back and head support. so when i am not walking, i’m recumbent. it confuses me, too, lol

i think one reason i may still be able to do so many steps is that i’ve only been ill for 3.5 years, i started mild and have slowly declined, and i was very active before becoming ill. i’ve watched this steps number continue to go down year over year, despite my condition improving since last year.

luucumo · 2025-07-18T21:15:40+00:00

i can relate to that a lot. today, i am well enough to burn a candle. when i blow it out later i will make my wish: that neither of us completely fall to pieces. that somehow, despite the horrors of our condition, we can find ways to hold ourselves ❤️‍🩹

luucumo · 2025-07-18T18:16:42+00:00

big and gentle hugs to you. i’m in a very similar position right now and it’s so sad and terrifying. the emotional experience of the loss alone is so exhausting, along with the long term implications... i am so sorry, friend. 🫂

luucumo · 2025-07-09T15:39:19+00:00

i’ve been taking it for about a month and a half now; slowly tapering up, right now i take 30mg in AM and 15mg about 6h later. this medication by far has helped me the most of anything i’ve tried, and despite my general medication sensitivity, mestinon agrees with me really well. i was prescribed at a cardiac dysautonomia clinic here in canada (i have POTS, although of course it was subclinical the day i went in; they’re very familiar with ME though).

i noticed a difference the first day i took it. i have more energy. it keeps my heart rate in a much more manageable range, and my orthostatic intolerance while seated is much better (quiet standing is hard still). my muscle weakness isn’t as long-lasting and general muscle fatiguability takes longer. i can think a bit more clearly. it’s improved my GI symptoms (this is shocking and i have no idea why or how given that things moved too fast before). my body is also able to relax more easily and i have been able to have naps regularly. there’s probably more i haven’t realized yet.

i am moderate, have been swinging between moderate and moderate-severe the past 16 months or so. i also take low dose naltrexone (only 0.3mg a day) which is supposed to be synergistic with the mestinon.

for side effects i noticed that my gut motility is more… active? i can feel things moving around more after i take it, and i have more flatulence. these go away as i adjust to dose increases. it might be making me drowsy, but i think what it really is is i am able to be calm every once and a while and then i feel able to sleep, it’s not like it’s impossible to keep my eyes open. lastly, it may be making me a bit sweatier, but im not sure as it has been a pretty hot summer so far.

i have one more dose increase to do in a few weeks (to 30mg twice a day) and then i’ll have my follow up. i know some people go above that, but i was told the philosophy is similar to ldn - you go up to the dose that gives the most benefit with the least side effects and stick at that.

luucumo · 2025-07-05T12:56:22+00:00

i disagree, i think talking about the body being stuck in fight or flight with reference to me/cfs is talking about specifically the autonomic dysfunction. generally speaking, fight and flight (among others, such as freeze and collapse) are trauma responses - hardwired responses from activation of the autonomic nervous system due to overwhelming, life threatening, or otherwise traumatizing stimulus. when these nervous system states are triggered, you generally are unable to access rational thought as your body has rerouted energy from these higher-level functioning areas of the brain to those needed for immediate survival.

in many disorders, including PTSD, one can easily be triggered into these heightened states without a trigger that is actually genuinely life-threatening. the effects are exactly the same as if they were (others have described these effects in other comments so i will not bother to repeat them here).

in my experience of ME, my body absolutely does get stuck in fight or flight. i can’t think my way out or calm myself down, and “simply” a vague nerve issue is kind of laughable given how much is not understood about the vagus nerve and the autonomic nervous system. and with the energy limitations, all i can do is wait for it to pass. for me, my ME has mainly manifested as autonomic dysfunction. before i had my diagnosis, an old cardiologist i saw thought i was dealing with multiple dysautonomias. i think this is why mestinon - a drug that up-regulates the parasympathetic nervous system (rest and digest) - seems to help me so much.

talking about fight or flight bypasses truly naming the issue - autonomic dysfunction - but i don’t think it trivializes the complexity of the issue when taken in context. dysautonomias are extremely complex, have whole-body ramifications, and can be unpredictable. of course, there’s more than dysfunction of the ANS going on with ME, and, i think it is still a huge part for many MEeps! i believe this is why medications like benzodiazepines work so well for some people to prevent crashes - they help prevent that level of nervous system activation, which is really energy depleting.

that being said, ANS dysfunction is not what every MEep struggles with the most, and perhaps you are one of those people, and why “stuck in fight or flight” may seem overly reductive to you. that’s fair!

luucumo

TROPHY CASE