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Hospitals and Long Term Treatment: Chronic illness thread

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  • DisruptedCapitalistDisruptedCapitalist I swear! Registered User regular
    My wife got a CPAP recently and has the same complaints as you. Luckily it seems like she used it enough so the insurance was satisfied. I think the cell service is primarily for the insurance to snoop on you.

    "Simple, real stupidity beats artificial intelligence every time." -Mustrum Ridcully in Terry Pratchett's Hogfather p. 142 (HarperPrism 1996)
  • TallahasseerielTallahasseeriel Registered User regular
    Most insurance is happy enough if you use it at least 4 hours a night for like 70% of the time during the trial period of like 3 months or so

    But yeah the cell connection is so it can report into your medical supply company/doctor/insurance that you are actually using it and not having a ton of apneas every night on your current pressure settings

    Another thing I can recommend is really fiddling with the humidity and temperature settings if yours has them it can make a big difference in comfort. Honestly the hardest part from me was switching to a back sleeper from being a stomach sleeper with hurt my back and neck like crazy at first.

  • webguy20webguy20 I spend too much time on the Internet Registered User regular
    Also changing the masks can help a lot of its walking you up at night. Ive gotten lucky that the standard nose masks seem to fit fine. I was able to sleep for a good 7 hours last night without much discomfort. We’ll see what kind of stats i get. I think i feel more rested this morning? I definitely dreamed more.

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  • JedocJedoc In the scuppers with the staggers and jagsRegistered User regular
    webguy20 wrote: »
    Just got my CPAP. Why the hell does it use a cell connection and not wifi? I suppose its so old people don't have to set it up on their wifi network even if they have access to one, but it really sucks when you're a person who lives out in the sticks without cell service!

    My CPAP actually uses 2G, so it stopped uploading my scores to the website when that tech was sunset last year. So now if I need to check my data I need to pull the card and use OSCAR to bring it up on my computer.

    GDdCWMm.jpg
  • pookapooka Registered User regular
    edited March 2023
    Last week, I finally made a whole bunch of medical appointments (5!) to try and get my shit figured out.
    So

    Friday appointment (for the intermittent-but-chronic-since-a-childhood-injury/currently flared left ankle): nothing in the x-ray, bloodwork in 'normal' range & quote no inflammation antibodies -- results which baffled the orthopedist, but no further guidance after the initial script for two weeks of Meloxicam. Eyyyy subclinical presentation? Low end on some of those ranges? No?

    Felt very rushed; I initially forgot to bring up Ehlers-Danlos as a possibility to him (which would apparently require its own 15 minutes to run down -- impression of another appointment) and reiterated it to the nurse. He came back with a real guarded/cautious expression, but at least seemed mollified when I framed it along these lines:
    I have this habit; whenever I come across something that seems to fit me, whether it's hobbies, or a career, or medical stuff, like with ADHD, I will take years to gradually realize it might apply. And then some number of years pass until I'm certain, and after that even more years go by until I do anything about it. So I'm cutting you in early on this process; I'm not 100% certain this is EDS, but I have a lot of separate symptoms that make sense in that context.

    So how do I go about getting it assessed? With the bloodwork today, is there anything we can add to that?
    (AFAIK, there isn't, but I wanted to get him on-side.) Overall impression is that this guy is too busy to really invest in my holistic health; not entirely ignorant or indifferent, just not much available.

    Saturday (no formal appointment): starting trial of Qelbree for my ADHD, "atomoxetine, but better." My new psych nurse seems pretty game and responsive -- she'd given me a sample pack, but I requested a couple weeks of 100mg after I found out that lower doses exist. I do way better if I start anything low and titrate up, along with just metabolizing stuff oddly. I noticed mild, similar effects as atomoxetine (ie, Strattera); so far, so good.

    Monday (surgeon to talk about possible GERD): offered Plan A, 6 weeks of beta blockers, or Plan B, schedule an upper endo (in 2.5 weeks!) and see if insurance will allow it w/o having to do Plan A first. I am low-key terrified, never had surgery, but the brief visit with him-- I like him, instantly feel he's trustworthy. He's warm and straightforward and not pushy. Most of all, it seems simplest to knock out the most possibilities with Plan B. A short visit, but I felt fully addressed, no need for gastro, I guess.

    Tuesday (back to sports medicine orthopedist who only addresses one issue per visit {which I see the utility of given the amount of time allotted to each patient, moreso than the stated reason of helping patients & doctor to focus, but holy inconvenience! & I was floored when made to pick on the spot which injury to address first} for the right shoulder I fucked up Jan 2019 by sleeping wrong on my left side): rotator cuff tendinitis, biceps tendinitis. Physical therapy for assessment & treatment, with an optimistic outlook for recovery.

    I have a better impression of him from this visit; he's still fast, but a funny sort of interaction when he follows up on the ankle, asking if I'd started physical therapy for it yet:
    Me, confused: You.. didn't seem keen on it for doing much good.
    Him: Yeah, but you might've decided to, anyway, and I was just thinking if it might be a good place to also work on your shoulder.
    ...
    Me: I know my body best, but you presumably know the science, so I'm mostly gonna try to follow your guidance.

    ----
    Upcoming:

    *aforementioned upper endo
    *sleep medicine, hopefully actually addresses my mild apnea & RLS and/or another sleep study
    *OBGYN
    *regular check-in with the psych nurse
    *trying to schedule the physical therapy at a clinic that popped up as a recommendation on an EDS forum, the doc has a mild form himself. Two birds, hopefully.

    *should probably book with a dermatologist to make a map of my moles and such.
    *dentist
    *The boob squeeze, ugh, as MyChart reminds me. My first. >:(
    Adulting.

    pooka on
    lfchwLd.jpg
  • webguy20webguy20 I spend too much time on the Internet Registered User regular
    edited March 2023
    Anybody have any recommendations for reducing nose irritation from the pressure of the nose mask of the CPAP? I definitely have some redness across the bridge of my nose. Also any help for reducing breakouts would be great too. I'm washing the mask part itself every morning, and I'm starting to wash my face in the evenings before bed now to reduce the amount of oil on my face. Anything else I should be doing?

    webguy20 on
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  • ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    Even if you're washing the mask, I'd wipe it and your face before you put it on again. Just a regular wet wipe across both is usually enough for me.

    As for the irritation, maybe check with the folks who set yours up to make sure you have the right size mask? I had to go down in size when I first got mine and I was shocked how small the correct fit was, could just be a bit off for you.

    WiiU: Windrunner ; Guild Wars 2: Shadowfire.3940 ; PSN: Bradcopter
  • webguy20webguy20 I spend too much time on the Internet Registered User regular
    Shadowfire wrote: »
    Even if you're washing the mask, I'd wipe it and your face before you put it on again. Just a regular wet wipe across both is usually enough for me.

    As for the irritation, maybe check with the folks who set yours up to make sure you have the right size mask? I had to go down in size when I first got mine and I was shocked how small the correct fit was, could just be a bit off for you.

    I’ve started washing my face right before bed to help get rid of oil, ill wipe the mask though. I think i got the right size dialed in now as i had no pressure point issues last night, just dealing with the light breakout in either side of my nose from the pads.

    Steam ID: Webguy20
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  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    Been depressed for about a decade. Tried about 15 different medications, none of them really effective. My last psychiatrist was convinced it was my job, so I got a new job. Pretty big pay cut but I get to work from home and it is day shift. Symptoms improved for about 3 months and then came back. Welp, so much for that idea. Have an appointment on the 26th for ketamine therapy. I am on a couple of different depression reddits, including bipolar type 2 which is my technical diagnosis. Seeing people talk about how big of an improvement the right medicine can make is very hard sometimes. Never had that, oh man I feel so much better moment. Fingers crossed this one works.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
  • TallahasseerielTallahasseeriel Registered User regular
    edited April 2023
    Hey that's one of my diagnoses as well.

    I've never had much luck treating it either (I've been dealing with it most of my 35 years at this point) though it did get a little better after first getting the ADHD meds, mostly because I was to hyperfocused on things and hypomanic to get bad depression swings but then the 2016 election happened and my relationship fell apart and woops it turns out I can still get into bad spirals and often still do.

    I have looked at ketamine therapy before but it seems unaffordably expensive for me at this point. Besides some of my medical diagnosis like hypertension and stuff might disqualify me from what my psychiatrist said.

    It just seems like I'm doomed to have a massive depression attack every few weeks or months for the rest of my life.

    Tallahasseeriel on
  • pookapooka Registered User regular
    4/20 brazen health update
    So as mentioned, my shoulder's a touch fucked up, and I got a referral from the DO, MPH sports medicine guy for physical therapy to treat tendinitis in my rotator cuff & bicep.

    Because I saw a particular doc's name come up positively re: EDS as a good practitioner & having it himself, I went to a regenerative medicine clinic not really knowing how it differed from physical therapy, figuring I'd two birds one stone it. They also offer PT, I had just --shockingly, given my usual habits-- not done my deep-dive due diligence on the other bit.

    I did not lead the witness; after a quick but thorough-seeming exam (including what I recognized from the Beighton scale), he very casually said I have hypermobility and laxity in the joints, seemingly just to preface a quick basic anatomy refresh and run down possible underlying causes for the pain. Before he got into treatment, I said, given a range of symptoms, I was considering the possibility of Ehlers-Danlos, and did he have guidance on that? To paraphrase: "Oh, yeah, you have it, whether you call it hypermobility or Ehlers-Danlos, if you need the diagnosis." A milder expression, but apparent. The validation is both warming and startling, so I had a tiny bit of a cry in the comedown while I sat in the car.

    While I want to figure out this whole *this*, I don't want the neat but shallow answer or confirmation bias, so I want to get a second opinion, plus he's all-in on non-covered injections w/o need for physical therapy. Like, I believe he believes in its efficacy as a provider & patient (& placebo effect being what it is...), and what research I've skimmed seems to support what he explained as, essentially, 3 increasing tiers of effectiveness, cost, & physical discomfort (dextrose prolotherapy, platelet-rich plasma, and bone marrow aspirate concentration). And he was both attentive and chill, offering no pressure to decide on if and when, sending me off with a folder to protect just a couple printouts on the respective treatments. ...Maybe it just feels too easy & I'm jumping at shadows; I did pick him because of EDS familiarity. Tap a rheumatologist, I guess?

    Meanwhile the surgeon who did my upper endo is like, "i'unno, go see a gastroenterologist, I don't know why." (Inflammation but no sign of infection or apparent immune condition, delayed gastric emptying & dyspepsia with unknown cause.) (He was very good & nice, so I'm not too huffy. Surgeons gonna surgeon, and I appreciate him staying in his lane.)

    So yeah, anyone have experience with EDS or the above treatments?

    Sleep stuff: had a follow-up today, actually. She's nice, took me at face value, and seems knowledgeable, so I'm pleased with her so far; even if she derped, and delayed putting in the request for a sleep study, she did apologize. Been titrating gabapentin, which is so far doing nothing for my subjective experience of sleep, either falling or staying asleep. But it has calmed my restless legs enough that --when one of our cats jumped on the bed & in attempting to pet her-- my partner poked me in the head, not realizing I was next to him in bed.

    Hopefully insurance stops fucking around and I can get an in-clinic sleep study soonish.

    Qelbree: cannot tolerate two 25mm capsules to hit 400mg. And I'd rather choke it down than put it on applesauce again; horrible. So... cognitive effects are still subtle, if present, and holding at 350mg for now.

    lfchwLd.jpg
  • pookapooka Registered User regular
    It's good to have true allies. So relieved.

    lfchwLd.jpg
  • PaladinPaladin Registered User regular
    edited April 2023
    I've done prolotherapy and prp injections. The evidence is pretty sketch because everyone wants their special way of doing it to win, so you can't really do a nice clean systematic review of 100 different protocols. Doesn't mean it doesn't work, just that there is no incentive to conclusively find out if it does.

    Prolotherapy and especially PRP is a "no pain, no gain" kind of procedure, as I'm sure they already told you. Regenerative medicine tries to put your inflammation to good use, so you have to rest and bear it without taking anti-inflammatories for a few days. It's not like a steroid injection where you can do rehab right away, but it is like any injection where you can screw it up by being a hero.

    The "pain and gain" mantra should not extend to your exercise regimen though if you have true ehlers danlos. Ehlers danlos predisposes to joint dislocation with high impact activities, like running or gymnastics where your limbs act as shock absorbers. Activities like swimming and yoga and cycling where you're not putting quick stress across a joint are preferred. Olympic weightlifting is right out. You may need bracing or taping to further stabilize joints in your preferred exercise.

    Paladin on
    Marty: The future, it's where you're going?
    Doc: That's right, twenty five years into the future. I've always dreamed on seeing the future, looking beyond my years, seeing the progress of mankind. I'll also be able to see who wins the next twenty-five world series.
  • MillMill Registered User regular
    Well a few months ago, doc had me start methotrexate, since the inflation in the eyes wasn't going down fast enough. Upside is that it's really helped with that, to the point that i don't need the eyedrops. Downside is the numbers for my liver are up, so depending on how the next round of blood work looks, I may have to stop taking it.

    Unfortunately, the insurers are going to make it a pain to go to the next best alternative, if that is what has to happen. That being that my dosage for remicade is increased. Problem is the insurance companies being assholes, means that they are strictly basing their authorizations off of how a trail was performed. A trail that was dealing with different conditions that aren't ankylosing spondylitis, but they'll do their damnedest to use that as an excuse to deny coverage.

  • GnizmoGnizmo Registered User regular
    Whelp, the past has caught up to me. I have had a bulging disc since forever that the doctors didn't think needed anything done about it at the time. One is now pressing on my spinal cord leaving my legs mostly paralyzed. I still have sensation at least, but I can barely move them most of the time. If I move wrong I can't move them at all. I am meeting with a neurosurgeon Monday to start the process of, well, neurosurgery is my guess. My health has been doing very well until this happened too. Hopefully it will be a quick recovery from all of this, but I am not super optimistic.

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    Gnizmo wrote: »
    Whelp, the past has caught up to me. I have had a bulging disc since forever that the doctors didn't think needed anything done about it at the time. One is now pressing on my spinal cord leaving my legs mostly paralyzed. I still have sensation at least, but I can barely move them most of the time. If I move wrong I can't move them at all. I am meeting with a neurosurgeon Monday to start the process of, well, neurosurgery is my guess. My health has been doing very well until this happened too. Hopefully it will be a quick recovery from all of this, but I am not super optimistic.

    My friend had surgery for bulging discs and his recovery was pretty short, a week or two of being off his feet and then another month or two before he could work. Been a year now and he has no problems. I know it doesn't help in the moment but it seems like we have a pretty good handle on how to fix that issue.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
  • RanlinRanlin Oh gosh Registered User regular
    Gnizmo wrote: »
    Whelp, the past has caught up to me. I have had a bulging disc since forever that the doctors didn't think needed anything done about it at the time. One is now pressing on my spinal cord leaving my legs mostly paralyzed. I still have sensation at least, but I can barely move them most of the time. If I move wrong I can't move them at all. I am meeting with a neurosurgeon Monday to start the process of, well, neurosurgery is my guess. My health has been doing very well until this happened too. Hopefully it will be a quick recovery from all of this, but I am not super optimistic.

    My mother in law has a scheduled surgery to deal with this too. Staying calm and off her feet is extremely rough because her stress was already going up, bringing back her OCD compulsions, and her husband and son don't help with anything and make them much worse.

    I hope it works out well for you, quick recovery or no

  • GnizmoGnizmo Registered User regular
    This actually helps so much, and I love y'all to death for saying it. I had someone convincing me this would be a major surgery with months and months of recovery time. I was worried because I have finally lined up some gender affirming surgery for myself and don't want it delayed overly long. Having to wait until Monday has had my brain spiraling.

  • KetarKetar Come on upstairs we're having a partyRegistered User regular
    I had surgery on two herniated discs about 13-14 years ago. They were bad enough that I frequently couldn't walk more than 10-15 feet at a time. After the operation the surgeon told me they were the worst herniated discs he'd ever operated on.

    I was up and walking around a bit within the first couple of days per their directions and walking up to a mile within the first two weeks or so of recovery. The difference in how I felt was amazing. The only thing that really took a longer time was lifting restrictions.

    I haven't had any recurrence of lower back issues since then.

  • hiraethhiraeth SpaceRegistered User regular
    furlion wrote: »
    Been depressed for about a decade. Tried about 15 different medications, none of them really effective. My last psychiatrist was convinced it was my job, so I got a new job. Pretty big pay cut but I get to work from home and it is day shift. Symptoms improved for about 3 months and then came back. Welp, so much for that idea. Have an appointment on the 26th for ketamine therapy. I am on a couple of different depression reddits, including bipolar type 2 which is my technical diagnosis. Seeing people talk about how big of an improvement the right medicine can make is very hard sometimes. Never had that, oh man I feel so much better moment. Fingers crossed this one works.

    How did this appt go?

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    hiraeth wrote: »
    furlion wrote: »
    Been depressed for about a decade. Tried about 15 different medications, none of them really effective. My last psychiatrist was convinced it was my job, so I got a new job. Pretty big pay cut but I get to work from home and it is day shift. Symptoms improved for about 3 months and then came back. Welp, so much for that idea. Have an appointment on the 26th for ketamine therapy. I am on a couple of different depression reddits, including bipolar type 2 which is my technical diagnosis. Seeing people talk about how big of an improvement the right medicine can make is very hard sometimes. Never had that, oh man I feel so much better moment. Fingers crossed this one works.

    How did this appt go?

    He said I was basically a perfect candidate for it. He wants me to try a new medicine, Vraylar, along with it because it requires you have an anti depressant. They sent the paperwork to my insurance for the PA but my wife checked and I should qualify. It will be two appointments a week for 3 weeks and then 1 for another 2 weeks and then 1 per month after that. I can drive myself there but someone else has to drive me home, but we should be able to figure that out.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
  • GnizmoGnizmo Registered User regular
    edited April 2023
    Ketar wrote: »
    I had surgery on two herniated discs about 13-14 years ago. They were bad enough that I frequently couldn't walk more than 10-15 feet at a time. After the operation the surgeon told me they were the worst herniated discs he'd ever operated on.

    I was up and walking around a bit within the first couple of days per their directions and walking up to a mile within the first two weeks or so of recovery. The difference in how I felt was amazing. The only thing that really took a longer time was lifting restrictions.

    I haven't had any recurrence of lower back issues since then.

    Oh ye gods that sounds so nice. I have had lower back pain for decades at this point. If this could potentially even just reduce that I would be thrilled. My dream recovery has me doing rock climbing better than before, but that feels like expecting far too much.

    Edit: The end result not the herniated discs. That sounds awful.

    Gnizmo on
  • hiraethhiraeth SpaceRegistered User regular
    furlion wrote: »
    hiraeth wrote: »
    furlion wrote: »
    Been depressed for about a decade. Tried about 15 different medications, none of them really effective. My last psychiatrist was convinced it was my job, so I got a new job. Pretty big pay cut but I get to work from home and it is day shift. Symptoms improved for about 3 months and then came back. Welp, so much for that idea. Have an appointment on the 26th for ketamine therapy. I am on a couple of different depression reddits, including bipolar type 2 which is my technical diagnosis. Seeing people talk about how big of an improvement the right medicine can make is very hard sometimes. Never had that, oh man I feel so much better moment. Fingers crossed this one works.

    How did this appt go?

    He said I was basically a perfect candidate for it. He wants me to try a new medicine, Vraylar, along with it because it requires you have an anti depressant. They sent the paperwork to my insurance for the PA but my wife checked and I should qualify. It will be two appointments a week for 3 weeks and then 1 for another 2 weeks and then 1 per month after that. I can drive myself there but someone else has to drive me home, but we should be able to figure that out.

    That's good! Are they making you wait 2 months on the anti-depressant? They wanted me on anti-depressants too, I don't have to be on them though now. And yeah no driving the rest of the day. Is it IV, oral, or nasal spray? Oral has passed trials and been off label here a few years in oz, I know they're still trialing IV, I don't know if they're trying for nasal because generic has been around for so long and is relatively cheap. Of course don't have to answer if you don't want :)

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    hiraeth wrote: »
    furlion wrote: »
    hiraeth wrote: »
    furlion wrote: »
    Been depressed for about a decade. Tried about 15 different medications, none of them really effective. My last psychiatrist was convinced it was my job, so I got a new job. Pretty big pay cut but I get to work from home and it is day shift. Symptoms improved for about 3 months and then came back. Welp, so much for that idea. Have an appointment on the 26th for ketamine therapy. I am on a couple of different depression reddits, including bipolar type 2 which is my technical diagnosis. Seeing people talk about how big of an improvement the right medicine can make is very hard sometimes. Never had that, oh man I feel so much better moment. Fingers crossed this one works.

    How did this appt go?

    He said I was basically a perfect candidate for it. He wants me to try a new medicine, Vraylar, along with it because it requires you have an anti depressant. They sent the paperwork to my insurance for the PA but my wife checked and I should qualify. It will be two appointments a week for 3 weeks and then 1 for another 2 weeks and then 1 per month after that. I can drive myself there but someone else has to drive me home, but we should be able to figure that out.

    That's good! Are they making you wait 2 months on the anti-depressant? They wanted me on anti-depressants too, I don't have to be on them though now. And yeah no driving the rest of the day. Is it IV, oral, or nasal spray? Oral has passed trials and been off label here a few years in oz, I know they're still trialing IV, I don't know if they're trying for nasal because generic has been around for so long and is relatively cheap. Of course don't have to answer if you don't want :)

    Nasal. I am not sure if my insurance requires me to be on an antidepressant for a specific length of time before starting, but I think if so the doctor may be massaging the truth a bit if so. I have been on anti depressants continuously for the past 12 years and only stopped for about the past 3 months due to my insurance no longer being in network at my psychiatrists office. Honestly they never worked, at best they just kept me feeling suicidal but not bad enough to act on it. Not really expecting much out of the new one he gave me but if the insurance requires it, as long as I don't have any side effects I will gladly take it.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
  • PaladinPaladin Registered User regular
    furlion wrote: »
    hiraeth wrote: »
    furlion wrote: »
    hiraeth wrote: »
    furlion wrote: »
    Been depressed for about a decade. Tried about 15 different medications, none of them really effective. My last psychiatrist was convinced it was my job, so I got a new job. Pretty big pay cut but I get to work from home and it is day shift. Symptoms improved for about 3 months and then came back. Welp, so much for that idea. Have an appointment on the 26th for ketamine therapy. I am on a couple of different depression reddits, including bipolar type 2 which is my technical diagnosis. Seeing people talk about how big of an improvement the right medicine can make is very hard sometimes. Never had that, oh man I feel so much better moment. Fingers crossed this one works.

    How did this appt go?

    He said I was basically a perfect candidate for it. He wants me to try a new medicine, Vraylar, along with it because it requires you have an anti depressant. They sent the paperwork to my insurance for the PA but my wife checked and I should qualify. It will be two appointments a week for 3 weeks and then 1 for another 2 weeks and then 1 per month after that. I can drive myself there but someone else has to drive me home, but we should be able to figure that out.

    That's good! Are they making you wait 2 months on the anti-depressant? They wanted me on anti-depressants too, I don't have to be on them though now. And yeah no driving the rest of the day. Is it IV, oral, or nasal spray? Oral has passed trials and been off label here a few years in oz, I know they're still trialing IV, I don't know if they're trying for nasal because generic has been around for so long and is relatively cheap. Of course don't have to answer if you don't want :)

    Nasal. I am not sure if my insurance requires me to be on an antidepressant for a specific length of time before starting, but I think if so the doctor may be massaging the truth a bit if so. I have been on anti depressants continuously for the past 12 years and only stopped for about the past 3 months due to my insurance no longer being in network at my psychiatrists office. Honestly they never worked, at best they just kept me feeling suicidal but not bad enough to act on it. Not really expecting much out of the new one he gave me but if the insurance requires it, as long as I don't have any side effects I will gladly take it.

    In general, insurance companies have on-paper reasonable criteria that some risk management consensus group made up somewhere relying on varying amounts of evidence. Essentially, they want it on-record that you've tried first (and sometimes second and third) line treatments to the letter, to the best of your ability, with no confounding hiccups in administration, compliance, or therapeutic appropriateness that would give any critic any hesitation saying you "failed" those previous therapies.

    This is all part of a "prior authorization" process, with which you may be familiar. This basically happens outside of your control, but the objective is to ensure that there is no possibility that you could potentially benefit in this area with a more standard and less costly treatment, and that the potential benefits you'd get to your function and quality of life would be worthwhile. This is mainly the job of your physician and service provider network to "sell" the story that previous treatments won't work any more, the time is right for you to try this one as a response expected in your case would be a great positive impact. In some cases, a "peer to peer" review is required, where your doctor will make the case to medical official who is a stranger to you (and is hopefully an actual certified medical professional) but reviews your records (that your doctor should handcraft) and denies your claim based upon insurance company guidelines. Your medical provider then argues your case as if before a judge, reinforcing that your previous therapies were tried by the book and in good faith, your medical situation is appropriate for the new treatment in specific ways, and your medical and life circumstances are strong indicators that you'll respond in terms of meaningful quality of life (and fiscal burden to the insurance company, if otherwise you're exposed to a bunch of costly and covered complications of not changing from traditional treatment).

    Marty: The future, it's where you're going?
    Doc: That's right, twenty five years into the future. I've always dreamed on seeing the future, looking beyond my years, seeing the progress of mankind. I'll also be able to see who wins the next twenty-five world series.
  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    Paladin wrote: »
    furlion wrote: »
    hiraeth wrote: »
    furlion wrote: »
    hiraeth wrote: »
    furlion wrote: »
    Been depressed for about a decade. Tried about 15 different medications, none of them really effective. My last psychiatrist was convinced it was my job, so I got a new job. Pretty big pay cut but I get to work from home and it is day shift. Symptoms improved for about 3 months and then came back. Welp, so much for that idea. Have an appointment on the 26th for ketamine therapy. I am on a couple of different depression reddits, including bipolar type 2 which is my technical diagnosis. Seeing people talk about how big of an improvement the right medicine can make is very hard sometimes. Never had that, oh man I feel so much better moment. Fingers crossed this one works.

    How did this appt go?

    He said I was basically a perfect candidate for it. He wants me to try a new medicine, Vraylar, along with it because it requires you have an anti depressant. They sent the paperwork to my insurance for the PA but my wife checked and I should qualify. It will be two appointments a week for 3 weeks and then 1 for another 2 weeks and then 1 per month after that. I can drive myself there but someone else has to drive me home, but we should be able to figure that out.

    That's good! Are they making you wait 2 months on the anti-depressant? They wanted me on anti-depressants too, I don't have to be on them though now. And yeah no driving the rest of the day. Is it IV, oral, or nasal spray? Oral has passed trials and been off label here a few years in oz, I know they're still trialing IV, I don't know if they're trying for nasal because generic has been around for so long and is relatively cheap. Of course don't have to answer if you don't want :)

    Nasal. I am not sure if my insurance requires me to be on an antidepressant for a specific length of time before starting, but I think if so the doctor may be massaging the truth a bit if so. I have been on anti depressants continuously for the past 12 years and only stopped for about the past 3 months due to my insurance no longer being in network at my psychiatrists office. Honestly they never worked, at best they just kept me feeling suicidal but not bad enough to act on it. Not really expecting much out of the new one he gave me but if the insurance requires it, as long as I don't have any side effects I will gladly take it.

    In general, insurance companies have on-paper reasonable criteria that some risk management consensus group made up somewhere relying on varying amounts of evidence. Essentially, they want it on-record that you've tried first (and sometimes second and third) line treatments to the letter, to the best of your ability, with no confounding hiccups in administration, compliance, or therapeutic appropriateness that would give any critic any hesitation saying you "failed" those previous therapies.

    This is all part of a "prior authorization" process, with which you may be familiar. This basically happens outside of your control, but the objective is to ensure that there is no possibility that you could potentially benefit in this area with a more standard and less costly treatment, and that the potential benefits you'd get to your function and quality of life would be worthwhile. This is mainly the job of your physician and service provider network to "sell" the story that previous treatments won't work any more, the time is right for you to try this one as a response expected in your case would be a great positive impact. In some cases, a "peer to peer" review is required, where your doctor will make the case to medical official who is a stranger to you (and is hopefully an actual certified medical professional) but reviews your records (that your doctor should handcraft) and denies your claim based upon insurance company guidelines. Your medical provider then argues your case as if before a judge, reinforcing that your previous therapies were tried by the book and in good faith, your medical situation is appropriate for the new treatment in specific ways, and your medical and life circumstances are strong indicators that you'll respond in terms of meaningful quality of life (and fiscal burden to the insurance company, if otherwise you're exposed to a bunch of costly and covered complications of not changing from traditional treatment).

    I actually work a job where I act as the go between for patients, doctors, and their insurance so yeah I am familiar with the process. Some insurances in the US have seriously stupid PA processes. I had one PA get denied because the doctor didn't write the patients middle initial when writing their name in the upper right hand corner of a page that had the patient's full name printed out on it already. Or fucking Blue Cross Blue Shield of MA which does not have a queue to speak with representatives and just flat out hangs up on you if there isn't a rep available once you go through the IVR. I appreciate the effort and time you took to try and explain all of that though because the general public is incredibly ignorant about insurance in the states.

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  • hiraethhiraeth SpaceRegistered User regular
    Was interested to see if nasal would be any different than oral, I couldn't really find anything with some brief poking around, though I did find this comment on reddit, and they also have a sticky on there that might be helpful in finding more accessible options.

    But anyway, remember to have some music, and just concentrate on breathing if any dose is too high, it can't hurt you if it is :)

  • PaladinPaladin Registered User regular
    Unfortunately there are no good bioavaialability studies for different routes because nobody has bothered to do a good comparison study

    Marty: The future, it's where you're going?
    Doc: That's right, twenty five years into the future. I've always dreamed on seeing the future, looking beyond my years, seeing the progress of mankind. I'll also be able to see who wins the next twenty-five world series.
  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    I just paid for my first session so I guess I am doing it. Hopefully it helps. Don't really have my hopes up too high since nothing has in the past but it would be great if it did.

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  • TallahasseerielTallahasseeriel Registered User regular
    I think my water pill is fucking up my kidneys and stuff. And other things.

    I don't even remember when they bumped the dose up as high as it is but I take it in the morning and just piss all fuckin day and I've been getting pain around my right kidney and feeling super sick if I get any sunlight at all.

  • knitdanknitdan In ur base Killin ur guysRegistered User regular
    Diuretics do put extra strain on your kidneys .

    Is it a long-term prescription? I’m kind of surprised they would do that for a diuretic.

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  • TallahasseerielTallahasseeriel Registered User regular
    knitdan wrote: »
    Diuretics do put extra strain on your kidneys .

    Is it a long-term prescription? I’m kind of surprised they would do that for a diuretic.

    Yeah. Hydrochlorothiazide. They gave it to me initially to manage my blood pressure.

    They've got me on 50mg of it a day. I'm not sure I remember how long the dose has been that high? I know I was on 25mg for a long while.

    I'm seeing a new urologist though and they have me a CT scan scheduled as well at one more blood test for creatinine? I probably will have to talk to my cardiologist about getting me off the diuretic if it shows up bad at all I imagine. They've already also got me on plenty of a beta blocker (metoporlol) and a calcium channel inhibitor (norvasc). And honestly as long as I'm resting my blood pressure is kinda okay. It's really only in doctors offices or if I don't get to sit for like 15 minutes first that it shows up bad.

  • knitdanknitdan In ur base Killin ur guysRegistered User regular
    The creatinine should tell them a rough idea of your current kidney function

    Definitely let them know about the kidney pain thing and the sunlight issue, which I have no idea what that could be tbh.

    If they have you on metoprolol and norvasc that should be taking your BP down to safer levels

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  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    Had my first ketamine treatment. It went...poorly. I puked four times inside of 20 minutes and that was on a completely empty stomach. It is a common side effect but they should have given me an anti nausea script honestly. The appointment lasted for 2 hours and my wife drove me home. We stopped and got some prescription strength anti nausea but I still feel pretty bad. They really did not warn me enough I feel but I am not upset at them, I am very susceptible to nausea. Going to take the zophran ahead of time before my appointment on Friday. The physical symptoms were so severe that I didn't even notice what it was doing to my head really.

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  • hiraethhiraeth SpaceRegistered User regular
    I'm sorry to hear that mate it sounds really fucking shit, did they even test you if you're allergic to it beforehand? Were you supposed to have an empty stomach? You really shouldn't be taking it on an empty stomach, I only do that once I'm comfortable with my dose, it hits way harder when you are. And yeah they should have given you anti nausea meds, they gave them to me straight away when I had my first too strong of a dose.

    Are you they just throwing you in the deep end from the get go? When I first started on it, they just started out really low and crept up. Back then it was only once a week and in person, it took at least a month before the first beneficial dose.

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    hiraeth wrote: »
    I'm sorry to hear that mate it sounds really fucking shit, did they even test you if you're allergic to it beforehand? Were you supposed to have an empty stomach? You really shouldn't be taking it on an empty stomach, I only do that once I'm comfortable with my dose, it hits way harder when you are. And yeah they should have given you anti nausea meds, they gave them to me straight away when I had my first too strong of a dose.

    Are you they just throwing you in the deep end from the get go? When I first started on it, they just started out really low and crept up. Back then it was only once a week and in person, it took at least a month before the first beneficial dose.

    It was in person at the clinic. They have a little treatment room with very nice comfy recliners. Yeah they told me to not eat for at least 2 hours before the appointment so I didn't. Honestly full or empty it probably would not have mattered. I never felt nauseated. I went from feeling fine to needing to puke inside of like 20 seconds. It was weird to feel the need to vomit without any nausea. To be honest the entire experience was way more intense then I was expecting. Like I got high as fucking balls. I was expecting a little something but this was like doing 10 shots at once fucked up. I don't think I am allergic to it, I just have a very weak stomach. The initial dose was called a loading dose and it was only 4 squirts, 2 at a time. Friday it well be the full dose of 6 but I am going to take a double dose of Zophran which should let me tolerate it much better. I am not really discouraged, I did not warn them his easily I vomit because I wasn't expecting the intensity. However, if the zophran doesn't work I will probably have to stop, unless I see a radical improvement in my mood and depression.

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  • hiraethhiraeth SpaceRegistered User regular
    I feel like they should be slowing down with whatever they're doing. Do you talk to anyone there before or after? A doctor or the like, to talk to about what happened and what's going on?

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    hiraeth wrote: »
    I feel like they should be slowing down with whatever they're doing. Do you talk to anyone there before or after? A doctor or the like, to talk to about what happened and what's going on?

    I had a follow up with my psychiatrist yesterday and he seems to want things to go ahead. Just told me to take the anti nausea medicine before my appointment tomorrow. I respond pretty well to that stuff so I am hoping it will keep things under control. If not, I don't think I can take the medicine. My insurance requires it be dosed on a fixed schedule along with some other criteria or it will not pay. Also I just found out the anti depressant he has me in is $1400 a month without insurance. He gave me a manufacturer discount card but my insurance requires a PA for it so I couldn't pick it up last night.

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  • hiraethhiraeth SpaceRegistered User regular
    Well I'm happy you're willing to try it again, I was hoping you'd have someone actually there overseeing everything going on to talk through what's going on. Reading through this mayoclinic article it sounds like what they're doing it standard. It just doesn't line up with my experiences taking it orally, I don't know if it's because it's nasal or not, everyone takes a different size dose that isn't dependent on weight or anything, just however much your body handles.

    Hopefully it goes well! It sounds like if you got 'high' it works for you, you just need to find the right way to take it.

    Is that the vraylar that's 1400?

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    edited May 2023
    hiraeth wrote: »
    Well I'm happy you're willing to try it again, I was hoping you'd have someone actually there overseeing everything going on to talk through what's going on. Reading through this mayoclinic article it sounds like what they're doing it standard. It just doesn't line up with my experiences taking it orally, I don't know if it's because it's nasal or not, everyone takes a different size dose that isn't dependent on weight or anything, just however much your body handles.

    Hopefully it goes well! It sounds like if you got 'high' it works for you, you just need to find the right way to take it.

    Is that the vraylar that's 1400?

    Sure is! Not really noticing any effect from it either, but that's par for the course. I use a daily mood tracker app and since starting it about a month ago my mood is just as erratic as ever.

    furlion on
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