Infusion Clinic lack of follow up

Continuing the discussion from Medicare:

I finally managed to get a series of six infusions. I have not had much of a response with my TRD and am wondering what comes next. The clinic has been somewhat unresponsive, rarely returning phone calls and not particularly helpful. Should I pursue more treatment? Am I within my rights to request lozenges and/or nose spray?

That is really annoying that your clinic has not been responsive to you. Sorry to hear that you have not had much of a response :confused: sending you best wishes!!

A lot of people would get more ketamine treatment - it may be worth changing the protocol or the dose if you didn’t respond to their standard series of six. A lot of providers may do different things. For most people I know, they get lozenges after they respond as a way to maintain the response, or as part of KAP, but that’s a limited sample size in my personal network. Depending on what you’re going through KAP may work better than infusions. It may be worth getting opinion from a mental health doc outside of the clinic, and I guess that’s the right move especially since they’re not being helpful…

best of luck

Please don’t feel hard on yourself if the infusions did not work for you; I tend to think it really only helps a subset of patients, and unfortunately we don’t have the diagnostic instruments and/or clinical training/willingness to appropriately identify the subtypes most likely to respond to treatment. Luckily some smart people ahem @Jimmy @Lucia ahem (sorry I’ve got a case of founders lung) are working on that :roll_eyes: Unfortunately, ketamine infusions are still too costly to just experiment with indefinitely, so I’d be prudent about going in for another round.

What I think might be worth considering is whether you might need to find some medication regimen to enable a robust response. For me, it wasn’t until adding lithium and later MAOIs that I really reaped the full benefits from it. Ketamine is not the silver bullet it’s hyped up to be, many would be better served to think about it as just another therapy in the TRD armamentarium. Consider that even with ECT, it’s standard practice to reinstate patients on some medication following treatment.

Also it’s okay if it simply doesn’t work for you: it doesn’t make you “more resistant” necessarily, it simply means you might be more responsive to other interventions — which is honestly a good thing, considering ket is still prohibitively expensive to sustain regularly. And no, I don’t think that nasal spray makes much sense if you did not benefit from the infusions, as the overwhelming consensus seems to be that IV is the gold-standard and the rest is really just used as maintenance.

One of the things that pisses me off about most of the research going on with ketamine, psilocybin, etc. is the protocols being tested. By that I mean, a single dose, or single finite series of treatments. It would be like giving a diabetic one insulin shot and then just letting them go to see if it has cured them. I believe the only reason for this is the govt’s interference and stigma they have created for any substance which makes you feel good. I have been very lucky in that the infusion clinic I go to has worked with me to try to find the optimal benefit protocol/regimen for me. After my initial treatments, I kept on with two treatments (IV infusions) a month for 6-9 months. I then cut it back to once a month and have been doing that close to a year. It has been maintaining me better than any SSRI/SNRI I ever took. I also adjusted to the protocol to a 90 minute session so I had close to a full hour of the therapeutic window (i.e. dissociative experience). I will try to not get longwinded here, but wanted to share a few other tidbits from my journey in case they might help anyone else. 1 - Sessions at the begining weren’t earth shatteringly good. Sometimes I’d actually feel crappy for 5-7 days after treatment. 2 - I also had some sessions where I felt very good the following day or day after. 3 - I feel I wasted most of my money for my initial series of infusions because Versed was added for it’s calming effect. I feel the amnesia from this negated a lot of the benefit of ketamine. 4 - At some point (12 months? 18 months?) I felt something had been fixed/rewired in my brain. The reflexive tendency to spiral downward stopped. 5 - I wish there was research going on for “maintenance infusion therapy”. I feel like I’m a singular anecdote that it might work. 6 - I do not feel ketamine is perfect and hope other substances will prove to be better. For now, it’s done the best job for me of anything.

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AMEN Umalmahay!!! Did they share with you the dosages you received in your initial treatments?
Enough of us out here are suffering and Ketamine has been a Godsend and then to boot most insurances will not pay for something that really helps us.

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I’m sure they did but I don’t remember. I can ask on Monday when my next session is. I do remember working through various sessions to get the dosage dialed in. re: my handle https://www.youtube.com/watch?v=YT0CScFzp1o

Wow, u really into cinema. That movie Mean Girls is my lived experience…

I get a booster ever 1-1 1/2 months. I also take lozenges. I would ask for lozenges. Sometimes I get more out of the lozenges than an infusion. If you can afford to get infusions I recommend it. You can also try TMS. A lot of insurances cover it. I just finished TMS. The combination of TMS, trauma therapy, and Ketamine had helped a lot.

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What is TMS?

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Transcranial Magnetic Stimulation…FPEOT, do you have positive things to say for TMS? Jim

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Good question… I’m curious too, especially on the whole combining all those things idea. I’m willing to try things that will make my treatment more effective. @fpeot1 can u also explain trauma therapy? I don’t think I’ve ever had any kind of targeted therapy specific like that. It would probably be helpful.

Yes. At first I had a good week, a bad week, a good week, a bad week, but since week 5 it’s been a fairly significant change. I don’t think I will ever be “cured”, but it’s made it a lot better to deal with and not go down the rabbit hole of ruminating thoughts of beating myself up. My paranoia has lessened as well. Anxiety will likely always be an issue, but it’s helped. I used to wake up and as soon as I opened my eyes I would feel a suffocating pressure of the world on my chest. Physical knots in my stomach and just overall tense body. One day I woke up and I still felt the “weight”/tension, but it wasn’t as bad as it had been. It’s a grueling process and I did skip a few sessions, but you are allowed to miss days and make them up. It’s a time consuming physically draining process, but it’s worth it if you are still feeling like the Ketamine is helping but not 100%. I had to go to the hospital because my insurance wouldn’t cover the other place. It’s 6 weeks, 5 days a week, 20 minute sessions. Driving to the hospital during COVID, Parking in the parking garage, walking through the hospital, talking to the nurse, and getting the treatment could sometimes be a 2+ hour daily affair. The zapping feels like a woodpecker pecking on your brain. If they put it on just a little off, it can hurt like hell. Like you are having a Charlie horse in your brain. I was able to get them to adjust it. They can also put a spacer to lessen the blow. The treatments made me super tired. I didn’t really want to do anything. If you are depressed it’s just like a regular day except it’s the TMS not the depression making you tired. In a way it’s like the banging on your brain takes your mind off of the depression. Getting motivated to go everyday was difficult, but I had wanted to try it for so long and my insurance covered a good chunk of it. I recommend the brainsway machine. Check with your insurance. I just happened to hear a commercial on the radio one day and called the number. I found out insurance does cover it now. If you do it, don’t give up. I wanted to after about 4 weeks. I was tired and didn’t feel a huge difference. I was frustrated with the process. My head was tired. It can be a lot doing Ketamine, TMS, and trauma therapy all at once. It’s helped me a lot. I hope this helps.

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Transcranial Magnetic Stimulation. Read my comment below.

I was going to a “talk therapist” and I didn’t feel like I was getting anything out of it. I had taken a psychological test for ADHD and depression and the doctor had questioned whether I maybe had PTSD. I didn’t think so because I didn’t have 1 traumatic event. I researched a little more and discovered I likely have CPTSD. It’s a newly diagnosed PTSD which is linked to childhood trauma of several events leading to trauma. My therapist asked me the questions for the ACES test. If you’ve had childhood trauma, look it up and take the test you can do it online. There’s also a Ted Talk about it. I find that once you start talking about some or your issues when you do Ketamine those things come up and you might get a different perspective on things. Watch the Ted Talk. I can a please play will see if I can find the link if you are interested. It helped to understand why I have anxiety. Basically what my therapist told me is you have an adrenaline dump when you have trauma. It messes up the physiology of your body so when you have stress instead of reacting like someone who hasn’t had trauma, you get an adrenaline dump which causes panic attacks, and all the other things that come with anxiety. This is what relates to my personal situation. I would look up a therapist that deals with your particular situation. My therapist doesn’t take insurance, but it’s worth it for me to put my mental health first for once in my 42 years.

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Oh yes, I do have cPTSD also as well as regular ptsd. Having both is a crazy experience… I’ve had talk therapy since I was 11…I actually learned about cPTSD because the k doctor told me about it when we discussed my history from childhood to now. My family has a bunch of narcissist in it. My mom and her side of the fam. Plus I have autism which meant even ppl who were not my fam hated me and did awful things to me thru out life. Ppl really hate anyone different from the norm.

So the tms actually hurts?? That sounds scary… As scary as ect sounds. And looks. Reminds me of those movies where they shock the shit out the patients head, scared the crap out of me. I’m terrified of trying anything like that, especially after I heard people say it caused memory issues. I already have memory issues and am afraid to make that worse. U r very brave to try this treatment. I’m also glad it is more beneficial than harmful to u.

I do think targeted trauma therapy could help. But I need to use my insurance. The k is already eating up lots of resources.

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I asked about my dosage yesterday evening. I posted it in another thread, but here it is again. I’m about 180 lbs. 200mg for a 90 minute infusion is what the clinician/nurse anesthetist told me.

Thanks for the response umalmahay!!! Was ur 90min infusion the only dissociative experience you had? Jim

No, I feel I’m better than 95% of sessions getting me into the zone. The one thing I wish I could do is to get photos of my visuals to show my wife. It’s really hard to explain textures, fractals, etc. verbally.

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:rofl::rofl:I told my wife it was God-like for me.

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There’s lots of psychedelic art online u can show her :purple_heart::purple_heart: check it out, I’m sure it will be easy to find visual art that fits. Yesterday in the supermarket, I was with my husband and someone walked in with a backpack that had a colorful liquid design and I got all excited telling my husband “that’s what k is like for me!!! Look!!!” It was the first time I saw something that looked more like how I saw k and not how most ppl depict most other psychedelics. But there’s definitely lots of fractal psychedelic sacred geometry type art out there