Shown: posts 1 to 10 of 10. This is the beginning of the thread.
Posted by johnLA on July 1, 2012, at 10:09:07
hi all-
first, i just want to let those interested that i am scheduled for my first ketamine infusion for 25 july. i am so looking forward to it. do not wan to build my hopes up too much, but i have been communicating on another board where several people with very difficult depressions have been having very good success with the ketamine. i hope i can join that group. :)
as i mentioned in an earlier thread, i tried ketamine nasal spray. did not really give it much of a chance to be honest. still, my experience in regards to response was much like many that i have communicated with; very mixed results. unlike what i have learned so far about the infusions.
i also just tapered-of remeron. i was on it for 1.5 years. i tapered relatively slowly and have had no real side-effects accept disrupted sleep.
can someone tell me what their experience was regarding return to a somewhat normal sleep pattern, if at all, after using remeron? i am rx'd 2mg of klonopin. i am using this to help me sleep. i have been using a bit more this past week. don't want to go that route, but i will for now. my pdoc does not seem too concerned.
i'm still in a very deep depression. most days spent in bed. having very dark thoughts. not sure it is the wisest thing to drop the remeron at this point, but just not having brutal dreams and extreme dry-mouth that i had for the last 1.5 years make me feel a bit normal and feels good. also, my weight is dropping. i gained about 10 pounds on the remeron. having a goal of making it it to 25 july also gives me hope to hang-in there. i guess i am in a 'holding-pattern' of extreme depression until the end of the month...
if i fail the ketamine trial it will be a huge blow to my hope of getting better, i have to be honest. my pdoc assures me there are many more drugs to try. i'll cross that bridge if and when i have to.
so, i guess my questions is;
any advice for getting some consistent sleep that does not include increasing my klonopin dosage? god i wish i could do it without another drug. possible to just wait it out?
thanks for any replies.
john
Posted by Bryn B on July 1, 2012, at 11:02:03
In reply to remeron, ketamine nasal spray, ketamine infusion, posted by johnLA on July 1, 2012, at 10:09:07
Hey John-
Sorry you're having such a tough time; I'm in the same boat. (Oddly I'm able to sleep though, but I used to suffer from insomnia and med-induced sleep disturbances.)
I used to take a lot of benzos, and always found Xanax and Ativan to be far more sedating/tiring than Valium and klonopin. The half-lives for both are also a lot shorter. Restoril is also a benzo which is primarily used for sleep. Of course Ambien and Lunesta, but these can all be a slippery slope. Maybe a small dose of Trazadone or Vistiral (similar to Benadryl)? Curious about the k treatments--do you have to do a washout?
Hopefully you'll be able to hold out. I'm seeing a new pdoc this week who is supposed to be very good, so we'll see, that's giving me some hope.
Posted by johnLA on July 1, 2012, at 12:03:21
In reply to Re: remeron, ketamine nasal spray, ketamine infusion, posted by Bryn B on July 1, 2012, at 11:02:03
thanks so much for your response bryn. i truly appreciate it.
i will run some of your suggestions by my pdoc and see what he says.
he is pushing wellbutrin by the way. and, i hear that has a good side effect of insomnia. geez.
on a side not, one of my favorite students in over 25 years of teaching was named bryn. the only bryn i ever had. thats over 5,000 kids! she was real cool too! :)
good luck on your fight too.
thanks again.
john
Posted by Phillipa on July 1, 2012, at 12:31:36
In reply to Re: remeron, ketamine nasal spray, ketamine infusion, posted by johnLA on July 1, 2012, at 12:03:21
I know this sounds impossible and could be. Think you could get a bit of excercise in? Or a walk? Or out of bed. As could the non sleeping be related to being in bed too much? I do hope so the ketamine will work. Phillipa
Posted by johnLA on July 1, 2012, at 12:37:35
In reply to Re: remeron, ketamine nasal spray, ketamine infusion, posted by Bryn B on July 1, 2012, at 11:02:03
bryn-
sorry not to answer the question about the washout while doing a ketamine infusion.
it depends on where you are having it done and if you are in a study or doing it outside a study. it seems many of the studies want you to do a washout first. i am not participating in a study. i will be going to a university hospital that has a specific ketamine infusion program for treatment resistant depression. big bucks by the way and not covered by insurance.
there are 2 places i have found that are doing ketamine infusions here in southern california; ucla and uc san diego.
my experience so far is that ucla has much more hurdles to jump thru to get to the ketamine infusion. i think is partly due to the how huge ucla is and just the administrative paperwork, how new the ketamine program is there, etc. the doc who does them is a great guy. i had ect done by hime a few years ago. very caring, yet hard to get a hold of because he is head of psych at a massively huge institution.
uc san diego is a much smaller operation (still big though), but so far in my experience is just a lot more intimate, if i can use that word.
the doc there has set-up the first to my knowledge specific ketamine infusion program on the west coast. he is developing a specific protocol for each patient. the guy even returns my emails! pretty impressive. his fees are also less than half than what ucla charges. he does not use an anesthesiologist. just a nurse who monitors your vitals why you are hooked-up to the iv. a major reason he can charge less. i also think this doctor makes very little money from this procedure. he only does it one day a week.
i think this all still so new that many docs are just starting to figure out the protocol.
many of the people i have spoken to have done the infusions have gotten over a month of complete remission from depression. again, these are people with long-term severe depressions who have failed many meds and even ect. i also have read accounts of where people did multiple infusions which brought remission eventually as well. others that due a maintenance program. a lot like ect.
sorry tob babble so much. i'm just excited and hopeful and bored! i even approached a group of very wealthy friends to ask if i need to do this long-term would they be willing to help me financially. they all said yes. by the way, my feeling is the prices will come-down as the procedure becomes a bit more mainstream.
and! to finally answer your question...with the uc san diego doc there is no washout that i have been told of as of yet prior to the infusion. this may be different for others on other drugs. i did fill-out a mess of paperwork and he saw that i am only on klonopin.
the ucla doc may also have different protocols regarding discontinuing meds prior to the infusion. like is said earlier, he seems way more conservative (maybe a good thing), but less experienced in the procedure than the doc down in san diego.
man, i talk a lot. sorry. got nothing else to do when lying in bed all day.
thanks again for your interest bryn.
take care.
john
Posted by johnLA on July 1, 2012, at 13:01:30
In reply to Re: remeron, ketamine nasal spray, ketamine infusion » johnLA, posted by Phillipa on July 1, 2012, at 12:31:36
thanks so much phillipa.
i think you are absolutely correct. me spending so much time in bed is detrimental to my sleep.
i think depression is habit forming in so many ways, especially in regards to behavior. i was always a 'bed guy' though very very active; gym, travel, movies, dinners out, etc., but also spending a lot of time in bed reading and taking a beautiful 1 hour nap every day after school. plus, the best part of bed which i will not go into here. ;) none of that now. would you believe i travelled to europe about 2 to 3 times a year for the past 30 years? i am scared to get on a plane now. ridiculous. the farthest i have gone in the past 2 years is down to san diego a few weeks ago.
a bit, or a lot, of agoraphobia and social anxiety. never had that before either. and, not much fight in me right now. i was always spoiled, but this has been different. just no passion about anything and the isolating is becoming very howard hughes-ish. i showered for the first time in about 5 days today. as a former jock i used to shower almost twice a day for work and then post-work-out.
finally, my asthma seems to be getting way worse since my depression hit. i haven't walked in over a month, but when i did i got asthma within minutes. now, i am using my nebulizer like 3 or 4 times a day. argh. i could only imagine doing my old workouts i did at the gym. i use to do pretty intense spin classes right-up to having my hip resurfaced a little over 2 years ago. maybe my body just needed an extended break. still, i need to find some kind of body movement that is gentle yet will burn some energy and get me back to some normalcy.
anyway, thanks agin phillipa. you are mentioning the same exact things my psychologist keeps telling me over and over! :)
also, thanks for letting me complain! i need to move my *rs* and i believe my mind will follow...
have a great sunday.
oh yeah, you guys having a rough time with the weather by the way? hope not.
john
Posted by Bryn B on July 1, 2012, at 13:08:37
In reply to @bryn, posted by johnLA on July 1, 2012, at 12:37:35
thanks for clarifying, john. I live in NYC so I imagine we have some programs similar to the ones by you. that said, I don't think I've exhausted EVERY med (yet), but as you know, it's tough to wait for them to work when you're debilitated and in need of instant relief. (that, and all the awful side effects.)
I haven't tried ect but I don't want to consider it, esp as it seems so many people don't experience long term relief from it. I'd like to find out about tms, though I see that as something to try down the line as maintenance and preventative care--I need to get out of this episode and back to functioning normally first.
sounds like you've got nice friends! I don't have insurance right now and everything is so costly. but, I would do anything and pay anything to feel better, so hopefully it will all balance out in the end. keep me posted on how you're doing!
b
Posted by Phillipa on July 1, 2012, at 20:29:50
In reply to @phillipa, posted by johnLA on July 1, 2012, at 13:01:30
John how bought pilates or yoga? Better yet can you get a doc to prescribe physical therapy? Medicaire approved 18-20 sessions for me used 5 and have at home stuff to do. Strengthens core muscles stomach and butt. As for the ketamine please make sure you are chosing the best hospital for you. And please keep posting. Phillipa
Posted by johnLA on July 1, 2012, at 23:26:56
In reply to Re: @John » johnLA, posted by Phillipa on July 1, 2012, at 20:29:50
thanks again phillipa for your post.
tried yoga. too slow.
pilates...you got me thinking. ;)
john
Posted by brynb on July 31, 2012, at 21:52:37
In reply to remeron, ketamine nasal spray, ketamine infusion, posted by johnLA on July 1, 2012, at 10:09:07
This is the end of the thread.
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