Also this is a very niche question so totally understand if no one has recommendations.
My surgeon and his team have recommended that I seek out a prescription for low dose ketamine troches to help with ongoing mast cell/ inflammation/pain issues, but I’m having a very hard time finding the right prescriber in California.
It was recommended that I try this therapy as it could help with the post op jugular decompression period I’m currently in and that it may also be a good long term symptom management to consider( like if jugular decompression doesn’t resolve everything on its own).
Has anyone here done this type of microdose therapy( who has dealt mast cell issues/ lots of pain/ jugular compression, etc)? and if so does anyone know of a Dr or practice that can prescribe in California?
Would also love to hear about anyone experience with it in general.
Most of the Drs I’ve contacted, either prescribe much higher doses/primarily do IV’s, don’t offer a low dose daily option and/ or they have no knowledge of any of the medical conditions I’m dealing with. Even someone who knows the basics about some* of my diagnosis or even just has experience with prescribing it for medical purposes( instead of just anxiety/ depression like most places) would probably be good. For the mast cell stabilization, it’s my understanding it would have to be used daily rather than a few times a week or month.
Anyway thanks for reading and for any suggestions!
I’ve heard of ketamine (& also LSD) being successfully used in low dose for PTSD & other traumatic nervous system or psychologically challenging disorders, but not for MCAS. That doesn’t mean it wouldn’t help with it though. If you’re not opposed to trying it, I say go for it. Since it’s low dose, your might not have any side effects & if you do, you can stop it immediately. You might just find something new & very helpful in reducing your symptoms.
I was given ketamine prior to my hip replacement surgery, & it zapped me into a very bizarre hallucination for a few min which gradually faded away. I’m quite sure the dose I was given wasn’t “low”!
Yes, it’s seems that there isn’t much research that’s been done in this area. Dr H and his staff said that they have patients( with mcas) who are responding well to this approach though . It makes sense to me that ketamine may be used at different dosages for different things. They encouraged me to pursue this, so that’s the only reason I’m looking into it. Just having a hard time finding a local prescriber but sortof used to every step of everything being a headache, ha. The experience you had with a higher dose of it does sounds scary. I have no desire to try an IV or a high dose right now as it does seem to produce some disturbing effects at higher dosages( although I know some people also like it benefit from mega doses).
Practically everyone I’ve talked to who’s had ketamine during a surgery or for a post op treatment said it put them in a peaceful or calm state of mind. Curious that it was the opposite for me!
I hope you’re able to find a doctor to prescribe it for you soon so you can try it out. I’m sorry if Dr. H can’t Rx it across state lines like he can other meds.
I think it really depends and have heard some horror stories also. Not sure if you’ve heard about people falling into “K-holes”. Many people like feeling dissociated though. Personally, I do not like feeling very dissociated, which why I don’t think I would enjoy taking a high dosage.
Exactly, not for me either. Frankly I feel low key dissociation just from ES/ CCI symptoms and or associated trauma as it is. Not trying to turn up the dial on that, LOL! Also used to having “unconventional” responses to drugs that others swear by, so I tend toward cautiousness. I believe the “K-hole” term is mostly used in the club drug setting/ not really a commonly used medical term to my knowledge.
Hi. Fellow Californian here. Where in CA are you? I “know” a woman who co-runs a FB group I’m in for Ehlers-Danlos folks in SoCal. She “takes” ketamine for pain, and for some reason I feel like she may take the pills. I’d be happy to ask her and report back, but it might take a couple days.
Hey, thanks for the heads up. I’m in a so cal eds group also so wonder if it’s the same one? Although I don’t know most of the people in there well. I’m definitely interested in troches or lozenges if she uses those- it’s just really hard to find someone to prescribe a low dose. I don’t think capsules or pills would absorb as well but then again, I’m pretty new to all this.
I posted in the SoCal Zebras group. Here’s what I got on ketamine (oral):
-Joyous and Mind Bloom are both mentioned as doing ketamine pills.
-One person went to this place: https://www.ketaminehealing.la/ and the doctor there will also prescribe oral or nasal doses.
-Someone else goes to: stellamentalhealth.com in LA, but she noted she goes for depression, not pain management.
-Another person said they were just referred to Dr. Lara Edinger, but hadn’t yet met her.
-Someone else posted about a third clinic, but then it was noted that the doctor who owns that clinic was arrested for participating in the January 6th riot in DC, and he’s been disciplined by the medical board for “multiple” DUIs and other inappropriate behavior! So the moral is: do some independent research on these folks before you trust them with something so delicate.
Makes sense, I don’t think I’m in that group. I haven’t consulted “mindbloom” but did contact “Mindscapes”. I consulted “Joyous” and they are strangely the opposite of joyous in terms of customer service as it was pretty unpleasant to interact with them. They offer lozenges and nasal spray from what I understood( as does mindscapes). However, neither seemed to be very familiar with prescribing a low dosage for daily use. The person at mindscapes I talked to said I could try to subdivide the lowest dose lozenge that they have which is 50mg but the whole platform is set up solely for mental health issues.
Thanks so much for the links. I have to double check if I’ve contacted ketamine healing LA yet. Allot of these places are set up for high dose IV administration and won’t prescribe for off label uses, but I’ll have to check on that place.
Pretty much all the places I’ve found are set up to only cater to those with mental health concerns( some even discriminate against those with complex health issues to a degree). Some will treat “pain” but they seem to prefer that you only have a floating pain condition that magically isn’t attached to other health conditions(?).
That Stella place does look alittle interesting and I haven’t contacted them. My experience so far is that if I reach out to psychiatric practices that use ketamine, they don’t want anything to do with a patient like me( and I don’t want to feel like I have to lie about why I’m interested in a ketamine prescription especially bc it was my surgeon who recommended it)- a few have been a bit rude about declining me but I trust that they wouldn’t be right for me either. The one thing is that one that Stella places website, it says they offer treatment for “long covid” which makes me think they might be worth a call just to check.
Dr Edinger definitely does specialize in treating pain, and her website even says that she is knowledgeable about mast cell issues but her prices are above what I consider reasonable and ofcourse she doesn’t take insurance. On paper she would prob be the best for my situation but every time I go to her website or when I was last reminded about her rates, I get deterred.
That’s crazy about the Jan 6th rioter! Some of these ketamine people definitely are pretty weird so I think it’s good advice to try to find a prescriber who cares and is a decent person, etc.
Anyway, thanks for these suggestions and I guess I’ll circle back on research when I’m able to. This has just been way more of a headache that it probably should be. I’d really rather work with someone even remotely interested or knowledgeable about even a few of my diagnosis or something general like “mast cells” but even someone who would be willing to write a low dose script who is also just a nice compassionate person could work also.
The private pay thing is killing me, especially since I stopped working a year and a half ago. And I was our primary earner. I adore my functional med provider – she’s the one who identified all of this and a lot more. But her rates are going up to $600/hour in July (first increasing to $500 just for the month of June, which I found weirdly offensive!). She’s good and I’m happy for HER for her success, but I’m bummed for me. And there is a super annoying dearth of cardiologists treating POTS in LA, and the ones who do are all private. Our health care system … [shakes fist and yells into void…]
You have done a lot of digging! The LA one looked pretty good actually and it did mention oral dosing and various forms. Hang in there!
Yeah, that’s how much they are charging now. For context Dr Edinger is even more expensive than that! I was diagnosed with dysautonomia by a cardio but it wasn’t my understanding that they are great at managing it especially if the handful of meds they prescribe for dysautonomia aren’t helpful. Have you found working with a cardio helpful? Ofcourse if you have actual heart issues, that would be a different situation. I have tachycardia but no other known heart issues. The cardio recommended I see a mast cell specialist instead but so far that allergist has been too ordinary to help me much.
People think California has great specialists for the things we deal with but I’ve been more or less extremely let down over a long period, and almost all the Drs that have diagnosed me correctly let alone helped me have required traveling out of state.
The functional provider you mentioned sounds above average if she could identify vascular issues. Can I ask her area of specialty and name or if she’s a cardio? I definitely need to find a new Dr/ Drs to help me with some things that aren’t surgery related( other aspects of being a “spikey leaky” patient or whatever we are called). She may be someone I’ve already consulted or even worked with, but thought I’d ask incase she’s someone actually worth reaching out to!
Anyway, the financial part of this is dreadful but I’m glad you’ve found some pieces of your health puzzle.
. It makes sense to me that ketamine may be used at different dosages for different things. They encouraged me to pursue this, so that’s the only reason I’m looking into it. Just having a hard time finding a local prescriber but sortof used to every step of everything being a headache, ha. The experience you had with a higher dose of it does sounds scary. I have no desire to try an IV or a high dose right now as it does seem to produce some disturbing effects at higher dosages( although I know some people also like it benefit from mega doses).
you’re able to find a doctor to prescribe it for you soon so you can try it out. I’m sorry if Dr. H can’t Rx it across state lines like he can other meds.