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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 20 of 20. This is the beginning of the thread.
Posted by roversreturn on October 10, 2011, at 19:32:27
Ok, well back in 2007/2008 i had a great response to riluzole. It took a while to kick in, but i can't recall quite how long!! My previous posts from 2007 only take me up to day five.
Anyway years on and having abused my brain with ciggarettes, scopolamine and whatever else the doctor offered me i have tossed away the ghb, clomipramine and klonopin with abandon and i am embarking upon a mission to recover that feeling..........wish me luck!!!
I'm going to document my trial here and i won't forget to update 'when' i get better. So during the trial i am taking just the riluzole (aiming for 50mg twice a day for the next 4 weeks and then going to 50 and a 100 each day), relora (a herbal supplement) and a probiotic.
Would really appreciate any feedback especially from mogger, uncouth, SLS and anyone else who has tried it over the years!!! Especially as i can't get my new babblemail to work!!
Wish me luck!!!
Rover
Posted by floatingbridge on October 13, 2011, at 12:56:56
In reply to back to riluzole - day 6, hitting 100mg!!, posted by roversreturn on October 10, 2011, at 19:32:27
How is it going?
Posted by rovers95 on October 15, 2011, at 21:12:17
In reply to Re: back to riluzole - day 6, hitting 100mg!! » roversreturn, posted by floatingbridge on October 13, 2011, at 12:56:56
> How is it going?
No better no worse im afraid, up to 150mg per day!!
Rover
Posted by Phidippus on October 17, 2011, at 18:25:47
In reply to back to riluzole - day 6, hitting 100mg!!, posted by roversreturn on October 10, 2011, at 19:32:27
I've taken Riluzole before at 50 mg. I didn't have a heavy response to it. How's it feeling for you?
Posted by roversreturn on October 18, 2011, at 2:26:42
In reply to Re: back to riluzole - day 6, hitting 100mg!!, posted by Phidippus on October 17, 2011, at 18:25:47
> I've taken Riluzole before at 50 mg. I didn't have a heavy response to it. How's it feeling for you?
Hi there, it seems preety benign for me, maybe I am feeling a little calmer and a bit more tired...doesn't appear to be doing a great deal with regards to depression though, infact this morning I'm feeling preety sh*tty! How long did you take it for and what were u trying to treat?Thanks
Rover
Posted by SLS on October 18, 2011, at 5:07:56
In reply to riluzole day 13/14 » Phidippus, posted by roversreturn on October 18, 2011, at 2:26:42
> Hi there, it seems preety benign for me,
That was my experience as well. It did not make me feel worse the way some other drugs have. Unfortunately, Riluzole proved ineffective for me.
- Scott
Posted by roversreturn on October 19, 2011, at 16:53:00
In reply to Re: riluzole day 13/14 » roversreturn, posted by SLS on October 18, 2011, at 5:07:56
Today i have been feeling better/different i.e. not depressed, but i have also changed my diet and eaten some carbs (which i had been avoiding) so who knows, but right now i don't really care, ha!!!
Cheers
Rover
Posted by floatingbridge on October 19, 2011, at 18:13:56
In reply to riluzole day 15, posted by roversreturn on October 19, 2011, at 16:53:00
Cheers! Good news. Sieze the day as they say.
Posted by roversreturn on October 25, 2011, at 15:04:08
In reply to Re: riluzole day 15 » roversreturn, posted by floatingbridge on October 19, 2011, at 18:13:56
Mixed week last week but two back to back good days, anxiety seems to have diminished significantly as well....perhaps this is the start of something?!
rover
Posted by floatingbridge on October 25, 2011, at 15:07:38
In reply to Re: riluzole day 21 - maybe a response?!, posted by roversreturn on October 25, 2011, at 15:04:08
rover, I hope so.
:-)
Posted by Uncouth on October 28, 2011, at 7:46:20
In reply to Re: riluzole day 21 - maybe a response?! » roversreturn, posted by floatingbridge on October 25, 2011, at 15:07:38
Any update? I will be starting another trial of riluzole next week. Seems like once a year or so I get excited about it. My pdoc finds it very compelling option these days given my main issues now are some obsessiveness, bipolar depression is my dx, and lamotrigine causes me memory side effects. I am hoping to give it a fair, long term trial this time for at least 8 weeks as it seems like it takes some time to kick in.
Is it generic now? How much does it cost, and how large of a dose will insurance cover? That was other problem last time, my Insurance only covered 100mg.
The recent research over the past few years is definitely promising, it is super unique and seemingly highly neurotrophic and neuroprotective. Some solid clinical trials going o. Right now too.
So what's the latest? Scott, would you consider trying again? How long and at what dose did you try it for??? Is lamotrigine really working for you and have you tried pushing dose? In rehab I was at they said lamotrigine was doing amazing things at much higher doses like 600-800mg, for even the mot treatment resistant and comorbid depressives and addicts.
Uncouth
Posted by SLS on October 28, 2011, at 7:53:01
In reply to Latest riluzole rilutek thoughts....trying next wk » floatingbridge, posted by Uncouth on October 28, 2011, at 7:46:20
> So what's the latest? Scott, would you consider trying again?
I doubt it. It was totally inert for me. I guess I would consider it if there were compelling evidence that higher dosages for extended periods of time produced results. I don't remember how much I took.
What you wrote about lamotrigine at high dosages is very interesting. I'll ask my doctor if he has heard anything about it.
What is it about riluzole that you find so appealing?
- Scott
Posted by uncouth on October 28, 2011, at 11:25:31
In reply to Re: Latest riluzole rilutek thoughts....trying next wk » Uncouth, posted by SLS on October 28, 2011, at 7:53:01
well honestly i'd rather take lamotrigine at a high dose but i definitely felt some cognitive issues on it. i think i'm just hoping riluzole has a similar efficacy but without the cognitive and motivational issues. rilutek seems a lot more broad spectrum too in its effects on glutamate regulation, affecting both glutamate release and uptake and metabolic cycling. pretty crazy how it does all those things at once, it seems magical. they seem to really like it at the NIMH. there is a great study going on: acute ketamine followed by longer term riluzole for TRD, would be interesteing when results come out.
however, i will say that the last two times i tried it (granted, it was for a very short time at lower doses and while i was on a shitload of other stuff) i didnt' feel like it solved my problems. but right now i am dealing with obsessiveness as well as bipolar depression, and the only other option is an SSRI (i'm coming off of paxil which was intolerable) and i'd just rather not go down that route, hoping rilutek gives me antidepressant and antiobsessional effects without causing anhedonia and also helping to support my brain neurotrophically. i think it's as highly neurotrophic of a substance as lithium or the like. it may have direct bioenergetic effects on mitochondria, so i could imagine it would synergize well with n-acetyl-cysteine which i'm also on.
but yeah of you're already on lamotrigine, i can't believe your doctor hasn't pushed the dose higher? there is not much in terms of clinical studies but from my experience the pdocs in rehab and my pdoc at home both have heard via the pdoc rumor mill that lamotrigine can really kick in and do some amazing things at higher doses, and that 200mg is really the bare minimum dose, as long as side effects don't get bad. you can probably increase quicker too, 100mg every week or so instead of by 50mg.
honestly, that should be your first step. seems like you are still feeling bad and vilazadone wasn't all that great? how do you feel scale of 0-10 wth 10 being the best? i have bipolar 2 mostly depression too but I have been feeling the best I have in over a year (and a year ago i was basically high) on this crazy cocktail:
Bupropion 600mg
Mirapex ER 1.5mg
Vyvanse 50mg
Saphris 10mg at night (really would like to decrease or d/c, but can't sleep without an AAP)
Paxil CR 25mg (discontinuing)
Cerefolin 600mg
Low dose naltrexone 3.5mg nightly (felt definite improvement after first night, and do feel a positive difference I think though it could be placebo. negligible side effects at this dose and using it as i'm using it i think, helps to upregulate endorphins etc.)
and a bunch of supplements including:
additional NAC, magnesium, zinc, chromium picolinate, alpha lipoic acid, lithium orotate, multivitamin, b-vitamins, melatonin, DLPA, D3, fish oil). this is actually down from a lot more, which is good progress. i basically believe that the supplements i'm on are really the bare minimum at least I with my mood condition and history should be on for supporting general brain health. i also eat a few tablespoons of coconut oil daily for the high quality saturated fat which is important too.anyway let me know what your pdoc says about pushing the lamotrigine as high as it needs to go to see some change, either positive or negative. i'm no doctor but given your resistance i think it's nuts that that hasn't been tried yet for you...or find a doctor that will prescribe low dose buprenorphine, which i'm looking into among bay area doctors right now too.
Posted by roversreturn on October 28, 2011, at 12:05:35
In reply to Latest riluzole rilutek thoughts....trying next wk » floatingbridge, posted by Uncouth on October 28, 2011, at 7:46:20
> Any update? I will be starting another trial of riluzole next week. Seems like once a year or so I get excited about it. My pdoc finds it very compelling option these days given my main issues now are some obsessiveness, bipolar depression is my dx, and lamotrigine causes me memory side effects. I am hoping to give it a fair, long term trial this time for at least 8 weeks as it seems like it takes some time to kick in.
>
> Is it generic now? How much does it cost, and how large of a dose will insurance cover? That was other problem last time, my Insurance only covered 100mg.
>
> The recent research over the past few years is definitely promising, it is super unique and seemingly highly neurotrophic and neuroprotective. Some solid clinical trials going o. Right now too.
>
> So what's the latest? Scott, would you consider trying again? How long and at what dose did you try it for??? Is lamotrigine really working for you and have you tried pushing dose? In rehab I was at they said lamotrigine was doing amazing things at much higher doses like 600-800mg, for even the mot treatment resistant and comorbid depressives and addicts.
>
> UncouthYeah, things are going good the last few days, one thing i would say is don't take a benzo with it like i did last week)...amde me feel like crap i.e. really depressed, and i remeber that from last time!! Maybe its also making my food allergies better i.e less reactive?
The only thing i can think is they don't know what drugs interact with it, in some of the trails they discontinued any drugs directly ffecting glutamate with it?
Give it time, a previous trial with ketamine and riluzole was abandoned fro futility as the ketamine wore off before the riluzole kicked in, i didn't feel any different till week two, but as you've mentioned before you do start to feel calmer a lot sooner and perhaps this will benefit any ocd symptoms early on?
I paid outright for it and it was so expensive, your pdoc sounds great!!! Good luck, would be great if you could keep a diary so we can see your progress!!!
Rover
Posted by mogger on November 1, 2011, at 0:57:35
In reply to Re: Latest riluzole rilutek thoughts....trying next wk, posted by roversreturn on October 28, 2011, at 12:05:35
After about 9 weeks on Riluzole I have never had such a powerful anti depressant effect. Unfortunately it mixed with my lamictal and I couldn't get a sentence out of my mouth! Phenomenal drug in my opinion and worth the wait.
mogger
Posted by SLS on November 1, 2011, at 5:47:58
In reply to Re: Latest riluzole rilutek thoughts....trying next wk, posted by mogger on November 1, 2011, at 0:57:35
> After about 9 weeks on Riluzole I have never had such a powerful anti depressant effect. Unfortunately it mixed with my lamictal and I couldn't get a sentence out of my mouth! Phenomenal drug in my opinion and worth the wait.
>
> mogger
Congrats!Does lowering the dosage of Lamictal help?
I didn't stay on Riluzole for more than a few weeks. Of course, if you had volunteered yourself as a guinea pig back then, perhaps I would have been well by now. It's all your fault!
Great info.
I hope you get well and stay well.
- Scott
Posted by mogger on November 1, 2011, at 11:48:09
In reply to Re: Latest riluzole rilutek thoughts....trying next wk » mogger, posted by SLS on November 1, 2011, at 5:47:58
Scott,
Great to hear from you and so glad to hear of your continuous improvement! I had to go off the Riluzole as literally I couldn't say anything without stuttering or slurring with the mixture of lamictal. I tried going down on the lamictal but that didn't work out so unfortunately I went off Riluzole. I also had insane edema as a side effect which was a bit disgusting. An amazing drug though. i remember the anti-depressant effect being so huge. Yes anyone who is interested in taking Riluzole must give it 10 weeks I say as it slowly but surely took a major effect! All the best,
Joseph
Posted by uncouth on November 7, 2011, at 7:54:48
In reply to Re: Latest riluzole rilutek thoughts....trying next wk, posted by mogger on November 1, 2011, at 11:48:09
floating and rover, can you guys describe more in detail about how rilutek has worked for you. it looks like in both of your cases it took a fair bit of time to kick in. how did it feel before then? did it hit anxiety or obsessional symptoms (if any) before then? are you both bipolar depressed? did lamictal ever work as well?
mogger why would you take lamictal and rilutek together? those seem like you just take one or another, and if rilutek worked better, why not dump the lamotrigine.
i'll hopefully be starting next week but now doctor is concerned about liver enzyme elevation and interstitial lung disease side effects, which are rare but are present. might try something else for the obessional and depressive symptoms. paxil did work pretty well, i must admit, though i hate the longer term effects of SSRI on anhedonia and motivation.
anyway, tell me more about rilutek, did it kick in all at once after a few weeks? how did it feel "subjectively" different from other meds you have tried. what did it do to motivation and capacity for pleasure.
it seems pretty awesome. the last time i tried it i didnt give it long enough. are both of you on 100mg?
Posted by floatingbridge on November 7, 2011, at 8:05:34
In reply to Re: Latest riluzole rilutek thoughts....trying next wk » mogger, posted by uncouth on November 7, 2011, at 7:54:48
Rover is on it. I am not. I am following his or her progress.
Good luck with your next move.
Posted by mogger on November 9, 2011, at 9:04:58
In reply to Re: Latest riluzole rilutek thoughts....trying next wk » mogger, posted by uncouth on November 7, 2011, at 7:54:48
Hi uncouth,
It took about 4 weeks to start to feel a decrease in anxiety and after 9 weeks the antidepressant effect really took shape like crazy. I have been on lamictal so long and it has brought me out of my depression out of prior years trying many medications so i was too nervous to give it up. I was on 100mg as my doctor didn't want me to raise to 150 as he had never used the drug before. I have tried to find the article stating how effective it is however it predicted it would not be a blockbuster as it takes so long to kick in but i cant find it. They hypothesized using ketamine at first until it kicked in. I remember being more motivated and feeling good however the combination of lamictal, which makes me slur anyway, made it difficult to talk and i got edema from it so the bags under my eyes turned me off as well. I don't want to deter you from trying it as i think the combo with lamictal caused the edema the speech impediment. Give it a good try i say. Hope it works for rover. Sorry for the grammatical errors as i am writing this on my phone.
This is the end of the thread.
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