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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 13 of 13. This is the beginning of the thread.
Posted by JohnLA on June 8, 2012, at 20:36:12
hi all-
after several months i finally got my hands on some ketamine. i am initially going to try it in a nasal spray due to cost...though i may go the infusion route soon regardless of the cost.
i can say this; something has happened (good) on just my 2nd day. might just be a placebo. still, except for klonopin, this drug is already unique in how quickly it seems to be doing something compared to the many drugs/ect i have tried the past 2 years. god i hope it is not a placebo!
no real side effects. of course this is way early in treatment, but the doc i am working w/claims she has seen it work from the first few sprays. she has a lot of experience w/ketamine.
i am strangely optimistic today. sat out in the sun a few times today. i have not done that since my depression started.
i don't want to get too excited. but, i am super curious now about the infusions.
i never believed in meds. today i do a bit. we'll see. i'll keep you all posted.
Posted by JohnLA on June 8, 2012, at 20:44:21
In reply to finally! on the ketamine train..., posted by JohnLA on June 8, 2012, at 20:36:12
here is a post that i posted on another form about my ketamine experience so far;
hi all-just back from san diego and a 3 hour + session with dr. sajben last night...
first the good;
she is extremely kind, thorough and very professional. very detailed oriented which i appreciated. she even took my primary care doc to task on some other health issues that were evident in my latest blood work and faxed-off a request for several things to be checked by my doc. my primary doc has a rep for not following-up w/her patients. anyway, it was kind of doc sajben to 'educate' me on some health issues i have outside of my depression.
i have been to so many doctors these past 2 years in this battle. this is my first ever severe depressive episode. i feel qualified to grade pdocs now. most have been good, some have been bad, and a few have been excellent. i put dr. sajben in the excellent category, even though she is not a pdoc.
she claims to be having some very good success using ketamine for depression. i believe her. she is unique compared to the other doctors i have seen because she really approaches depression from the physical/biological side. this impressed me.
now, for the not so good;
price! she is very expensive. i feel she is worth it, regardless if the nasal ketamine works. (oh yeah, i decided to go w/the nasal ketamine in the end. more on that later.)
next, not so good, is that, as i was spending 3+ hours with her i realized that this is all experimental. she even admits it. she is having success. but, i realized that it is just like many of the pdocs i have seen and the drugs they presribe. it will work for some, not for others. she also has no real set protocol for dosing. she told me it is very individual when it comes to dosing and that she will work with each individual to find the 'right' dose.
the application is fairly easy. the mixture comes out in a fine mist. she tells you to do your best to not swallow it and let your sinuses absorb the mixture. it does have a nasty taste when a bit of it drops into the back of your throat.
ok, here is what matters; does it work? i don't know and it is way too soon for me to know. i do know i felt a calmness after my initial 2 sprays. driving back-up to LA along the coast as the sun was setting felt calm and good. on the way down i was crying quite a bit to some songs on my ipod that were triggering past memories. this is a big part of my depression. this did not happen on the way home except one little tear-up. who knows if it was the ketamine, the gorgeous california coast/sunset, or me just being out of my bed/house and having had a 3 hour plus conversation all about me, but again, i did feel calm and dare i say it; less depressed. this was also the farthest i had travelled since my depression hit.
i took a few sprays last night when i got home and several more today. i can say i have had no bad side effects. is it working? again, too early to tell. though i do feel quite calm. that may be the klonopin though. ;)
i mentioned flip-flopping on the delivery method. i was going to do sublingual delivery and then decided on doing intra-nasal. i changed because i read on the drug forms that most of the ketamine is lost when delivered under the tongue. (again, this info was from a few recreational drug forms...not the best source i know!) i asked dr. sajben about this and she said either way could work. still, i decided to go with the nasal route for now.
which brings me to my final point. as i mentioned before i suffer from chronic nasal polyps. i have lost my sense of smell due to the polyps. it's a real bummer and one of the several reasons i am depressed. i did a search on polyps and nasal ketamine and found a study on someone who was prescribed nasal ketamine and eventually lost their sense of smell! argh! this patient was on nasal ketamine for pain. this concerns me. i'm scheduled for my 3rd sinus surgery to remove the polyps. i do get a bit of smell back for a few months after surgery and am hopeful that i might get my smell back someday. there is a high correlation with loss of smell and depression. never knew that until i became depressed. just like depression is hard to explain to someone who has never experienced it, it is very hard to express what the loss of smell has done to the quality of my life. when i get just a few whiffs of smell after my surgeries it is absolutely amazing emotionally. sorry to ramble on this, but i would hate for someone to lose their sense of smell. it can be devastating. i will look in to this further and post more.
ok, long post sorry. right now my gut feeling is i am going to go with the infusions sooner rather than later. mostly because it seems there is more experience/success with this use of the drug at the present time. since i paid so much though i will try the nasal spray for a bit. how long? not sure.
again, sorry for such a long post.
keep-up the fight everyone!
john
Posted by Phillipa on June 8, 2012, at 23:01:51
In reply to more detailed info (long) about my ketamine trial, posted by JohnLA on June 8, 2012, at 20:44:21
John please do keep updated. Great luck also. I read the opposite though that loss of smell and taste is what leads to depression. What I don't understand is why when polyps removed do they grow back? Phillipa
Posted by JohnLA on June 9, 2012, at 14:47:42
In reply to Re: more detailed info (long) about my ketamine trial » JohnLA, posted by Phillipa on June 8, 2012, at 23:01:51
unfortunately doctors don't know why the polyps keep growing back either.
i read that nasal polyps return in 75% of those who get them. bummer. at least we can take them out now relatively easy. there are some cool youtube videos of the little (or, big) suckers getting removed. as a former nurse you may find this interesting. i find it comforting in a weird way to watch these videos when i am really stuffed-up. it reminds me that i'll be rid of the bastards at least for another year or two. i know a guy who goes in for surgery once a year to take them out. my ent is excellent. the surgery is about an hour and really painless. as i write this i am really looking forward to it! ha!
as far as anosmia and depression, i think you may have misunderstood me. let me clarify. i think i was in a mild depression for several years before everything came crashing down in 2009/2010 which put me in a debilitating severe depression that i have been in since. at that point i began researching depression for the first time in my life and came across the connection that anosmia has with depression.
so, i agree, the loss of smell was a factor in my depression. i just didn't know it.
did you try those candy bars yet that i recommended to you?
Posted by JohnLA on June 9, 2012, at 14:55:14
In reply to Re: more detailed info (long) about my ketamine trial » JohnLA, posted by Phillipa on June 8, 2012, at 23:01:51
took 4 sprays this am. feeling ok. a slight euphoric feeling just for a few minutes and now a calmness. i will try to not take any klonopin today to see what differences i may feel.
i may take a few more sprays as the day goes on. actually going to go do a few errands. this is big for me.
still, i am really looking forward to trying the 'real deal' = ketamine infusions...
Posted by Phillipa on June 9, 2012, at 21:36:11
In reply to day 3 of nasal ketamine, posted by JohnLA on June 9, 2012, at 14:55:14
John no candy too expensive. So how did the rest of the day go? I do wish I had polyps as relief would be sight. Phillipa
Posted by JohnLA on June 10, 2012, at 21:37:09
In reply to Re: day 3 of nasal ketamine » JohnLA, posted by Phillipa on June 9, 2012, at 21:36:11
having polyps doesn't necessarily mean that you'll get your sense of smell back once they are removed. wish that was the case.
if i had the choice i'd pick anosmia and no polyps over chronic nasal polyps. very few people get their sense of smell back even after polyp removal. still, like i said, i get whiffs of smell for a few months that are so very precious post surgery. hoping that in the future new drugs or therapies are developed to both kill off the polyps and restore smell. i can only hope and wait.
and yes! those candy bars i recommended to you are very expensive. maybe treat yourself to one on a special occasion. i promise you you won't be disappointed! :)
Posted by Phillipa on June 11, 2012, at 20:18:46
In reply to phillipa, posted by JohnLA on June 10, 2012, at 21:37:09
I was told that a week of prednisone can stimulate the nerves to grown again but after a certain amount of time that's it never smell taste again. The "reminder" of what things smell like helps to remember what things taste like also. And now they are saying there could be a link to early Alzheimers with loss of smell. Ever heard this before? Phillipa
Posted by Hugh on June 15, 2012, at 11:34:17
In reply to finally! on the ketamine train..., posted by JohnLA on June 8, 2012, at 20:36:12
John,
How was the rest of your week on ketamine?
Posted by johnLA on June 15, 2012, at 21:22:24
In reply to Re: finally! on the ketamine train... » JohnLA, posted by Hugh on June 15, 2012, at 11:34:17
hi hugh-
thanks for your interest.
the short answer is i will be moving-on to ketamine infusions as soon as i can.
the intra-nasal works somewhat. i do feel a calmness. i do not feel any real lessening of my depression though unfortunately.
i kind of had a feeling that this would be the case from all my research. the real good and consistent results so far have been from the iv infusion method. i wanted to try the intra-nasal first due to cost. oh well, you get what you pay for. i am hoping in this case.
thanks again for following-up w/me. i will start a new thread once i start the iv infusions.
ps i have been in contact with several people who are doing both methods. again, those doing the iv are having very dramatic reductions in their depressions. those using the nasal spray are having mixed results.
Posted by SLS on June 16, 2012, at 0:19:11
In reply to hugh, posted by johnLA on June 15, 2012, at 21:22:24
Hi John.
> i wanted to try the intra-nasal first due to cost. oh well, you get what you pay for. i am hoping in this case.
How much do the infusions cost?
Do you know which protocol you would be prescribed?
Good luck!!!
- Scott
Posted by johnLA on June 16, 2012, at 19:38:49
In reply to Re: hugh » johnLA, posted by SLS on June 16, 2012, at 0:19:11
good to hear from you scott.
i initially found a place (ucla) to do the iv infusions for $1250 per infusion.since then i have found several doctors (all associated with universities) that charge much less.
the doctor i will be going to charges $550. still very expensive, but quite a bit cheaper than ucla.
i have a feeling that the prices may continue to drop as ketamine gets more mainstream.
as far as the dosing protocol: i have been in touch with a few people who have had the infusions. also, i have read at great length case studies on this subject. the amount of ketamine used is based on ideal body weight. this seems to be pretty standard in all the studies i have come across.
what is not standard is the amount of infusions people are having and how long a response lasts. quite varied actually. the good news is that most people are reacting in a very positive way. some for a week or so and some up to 5 to 6 weeks. this is with a single infusion by the way.
the doctor i am hoping to see does a multiple series of infusions. i believe 1 time a week. kind of like ect in a way. again, i have read case studies of very refractory patients who reached remission after several infusions. i do believe they are also on some sort of maintenance schedule.
sorry i don't have more specific info. once i get going on the infusions i will get you more specific info. meanwhile, i'll do a little research and post some of what i have found.
hope you are doing ok.
john
Posted by johnLA on June 16, 2012, at 19:57:04
In reply to scott, posted by johnLA on June 16, 2012, at 19:38:49
scott;
here is one protocol used at a major university;
' 0.5 mg/kg IBW at a 3-week inter-dose interval. We based our estimation for the maintenance dosing interval on the time frame between remission and relapse for this patient. Relapse to depression was prevented by treating prior to the onset of a relapse.'
again, from the people that i have spoken to, remission lasted anywhere from a week to 6 weeks from a single infusion.
i am so hoping i get a response. i did feel something with the nasal spray. hoping that is a positive sign that i may react more strongly to the infusion. by the way, i have a pretty wild idea about funding the ketamine infusions if i do indeed respond. but, i'll save that for another time. don't want to get too far ahead of myself.
john
This is the end of the thread.
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