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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 3 to 27 of 73. Go back in thread:
Posted by Glydin on October 21, 2006, at 20:08:39
In reply to Re: Lyrica left me feeling worse., posted by lymom3 on October 21, 2006, at 19:11:39
> Keep your chin up. You do so much for all of us here.
Very true!! Scott, I'm sorry that plan didn't work out for you. Options are there even if you need to revisit some previous ones.
Please take good care of you. Your kindness, compassion, understanding and knowledge is such an asset to this board and you are very much cared about here.
Good thoughts to you,
Glydin
Posted by Phillipa on October 21, 2006, at 20:39:32
In reply to Re: Lyrica left me feeling worse., posted by Glydin on October 21, 2006, at 20:08:39
Scott you're a fighter and you will keep fighting. If I can you can too. Where is Link? We need a plan. Will someone please try to help Scott. Love Jan
Posted by notfred on October 21, 2006, at 22:28:12
In reply to Re: Lyrica left me feeling worse., posted by Phillipa on October 21, 2006, at 20:39:32
Have you tried Subutex or any other opioids ?
Posted by Phillipa on October 21, 2006, at 22:36:22
In reply to Re: Lyrica left me feeling worse., posted by notfred on October 21, 2006, at 22:28:12
Scott I was thinking and thought of VNS. Since you've had partial responses to meds. And you continue on meds with the VNS in place maybe it would jump start your meds? Love Jan
Posted by willyee on October 21, 2006, at 22:57:20
In reply to Lyrica left me feeling worse., posted by SLS on October 21, 2006, at 17:06:31
> Lyrica did something to leave me feeling worse. I discontinued it over a week ago. Neurontin affected me the same way. The exacerbation of my condition does not become apparant until it is unmasked by the discontinuation the drug.
>
> I have no idea how long I will be feeling worse for.
>
> I have not been in a very healthy state of mind.
>
> My outlook is bleak. I feel that I have run out of options.
>
>
> - ScottSorry your in a hole guy.I know what it feels like,theres depression that even though sucks,but you become somewhat accustomed to it,almost used to it,although you never fully can.
Than theres beyone that,a hole that is worse than the ordniary shi--y depression,and thats where it sounds like you are.Where you would be happy just to return to a stable depression,i know this sounds off but im hoping u understand.
Anyway lyrcia also made me feel terrable,which is why my anxiety would not let me stay on it.What i would ask is you have mentioned that PARNAT/DESIMIPRIMINE combo once helped you.You accomplished a lot,before it pooped out.
Have you considered at least going back to this?Maybe not to get the full benifit you had,but at least to get out of the "black hole" i spoke of,and to a point where you can override the negative thinking which is obviously in more control now.Use the combo to get from point A,TO B,so you can THEN have enough thinking power to sit and come up with some new options.
The worst thing that hole does is push the idea of no options,but honestly we made our options all along,most of the stuff you and i,and lots of people here use are unconverntional,and unconventional has many many many options.
Also last thing ill ask is about the parnate,i was doing really well,after starting on overseas parnate from GOLDSHIELD.I dident order too much,and until i get more im back on glaxco.Almost immediatly i lost the benifits the goldshield gave over glaxco,so have you tried using the goldshield,assuming you werent.
Either way i usualy go back to something that helped even a little when times are at there most bleak,just to get back to a nuetral point and away from the negative which is horrable.Wish you luck,feel free to email me at brklyn234@yahoo if you need to ask anything else.
Posted by SLS on October 22, 2006, at 7:51:17
In reply to Re: Lyrica left me feeling worse., posted by notfred on October 21, 2006, at 22:28:12
> Have you tried Subutex or any other opioids ?
No, I haven't. Do you think giving oxycodone a quick trial would tell me anything? I think I can dig up some Percocets to work with. I ran buprenorphine past my doctor once. He said that if it really worked, you would hear more about it. I guess that tells you where his head is at.
- Scott
Posted by SLS on October 22, 2006, at 8:07:57
In reply to Re: Lyrica left me feeling worse., posted by Phillipa on October 21, 2006, at 22:36:22
> Scott I was thinking and thought of VNS. Since you've had partial responses to meds. And you continue on meds with the VNS in place maybe it would jump start your meds? Love Jan
That is a great way to look at it.
Two doctors who first rejected the idea are now suggesting it for me. It seems like an act of desperation. Of course, my case qualifies. I don't know. Something is still telling me not to do it.
A recent study posted on Medline reported disappointed numbers. Only 28% of people were improved after a year. These were not remissions. Remissions were less than 16%. I don't know. Given that these people were treatment-resistent, perhaps this isn't that bad. Maybe I should consider it.
- Scott
Posted by SLS on October 22, 2006, at 8:22:14
In reply to Re: Lyrica left me feeling worse., posted by willyee on October 21, 2006, at 22:57:20
Hi Will.
> Either way i usualy go back to something that helped even a little when times are at there most bleak,just to get back to a nuetral point and away from the negative which is horrable.
Yes. I'm thinking about asking my doctor to put me back on Nardil. I would like for him to keep me on nortriptyline at the same time, but I don't think he will go for it. I would actually expect a mild to moderate serotonin syndrome to develop from the combination, but I would still like to see for myself. Parnate + desipramine doesn't do that much for me anymore. Nortriptyline seems to help more than desipramine. Still, the improvement yielded is but a pittance.
Thank you for posting your email address. It was very kind of you.
- Scott
Posted by SLS on October 22, 2006, at 8:25:33
In reply to Re: Lyrica left me feeling worse., posted by lymom3 on October 21, 2006, at 19:11:39
Posted by willyee on October 22, 2006, at 9:45:02
In reply to Re: Lyrica left me feeling worse. » willyee, posted by SLS on October 22, 2006, at 8:22:14
No problem,like i have said,im very loose with my opinions,BUT im there for anyone who might need something.We are at war,and we all have the same goal.Id actualy like u to contact me when u can because i have some things i want to ask,and tell you,however i want you to when you feel ok to do so.
Its tuff,im struggling to,i think i am a rapid cycler,me and my mother have been talking all morning and shes listening a little and when she seen some stuff on the net i suppose the writing in her face had impact because im getting some understaning,im very exhausted so your not alone guy.
Posted by Racer on October 22, 2006, at 12:46:02
In reply to Re: Lyrica left me feeling worse. » Phillipa, posted by SLS on October 22, 2006, at 8:07:57
> >
>
> Two doctors who first rejected the idea are now suggesting it for me. It seems like an act of desperation. Of course, my case qualifies. I don't know. Something is still telling me not to do it.Could that something be related to the fact that it's a lot less temporary than a medication you can stop if it does no good? Frankly, I would have a lot of hesitation about it, too -- and not *only* because I'm so screwed up about treatment at this point.
>
> A recent study posted on Medline reported disappointed numbers. Only 28% of people were improved after a year. These were not remissions. Remissions were less than 16%. I don't know. Given that these people were treatment-resistent, perhaps this isn't that bad. Maybe I should consider it.
>
>
> - ScottRemind me: did you try the TMS? Any effect? If not, how about giving it a try now? If nothing else, it's not as permanent as the VNS implant...
I'd email you the new psychopharmacologist I just saw, if I could, because he does seem to be pretty systematic, and specializes in TRD. Since I can't, though, may I remind you that you've told me you always forget that tianepine is out there as something you haven't tried? There are other drugs, to, probably -- reboxetine? Manerix? Oxycontin? Buprenorphine (sp?)?
Regardless of all that, though -- I'm so sorry this didn't work out for you, Scott. That must feel terrible for you, and very hopeless. I wish I could help, beyond saying that I care about you.
Posted by ed_uk on October 22, 2006, at 12:48:41
In reply to Re: Lyrica left me feeling worse. » notfred, posted by SLS on October 22, 2006, at 7:51:17
>He said that if it really worked, you would hear more about it.
That's rubbish, most pdocs probably wouldn't even consider prescribing an opioid for depression - so how are you going to hear about it?
Ed
Posted by ed_uk on October 22, 2006, at 12:50:31
In reply to Re: Lyrica left me feeling worse. » SLS, posted by Racer on October 22, 2006, at 12:46:02
Hi Scott
I'm sorry to hear you're in a bad place. Perhaps it is time to try EmSam? Or tianeptine? EmSam could be your next step?
Ed
Posted by notfred on October 22, 2006, at 12:53:15
In reply to Re: Lyrica left me feeling worse. » notfred, posted by SLS on October 22, 2006, at 7:51:17
> > Have you tried Subutex or any other opioids ?
>
>
> No, I haven't. Do you think giving oxycodone a quick trial would tell me anything?Yes I think it would. buprenorphine, I think it is better than a full mu agonist for long term treatment as it seems to carry less potential for dependance and/or dependance is minor so the med
is easy to stop.My reactions to opioids (taken legit for pain) indicate opioids might be very effective AD's for me. However, AD's work for me so I have never had to try opioids.
> I ran buprenorphine past my doctor once. He said that if it really worked, you would hear more about it. I guess that tells you where his head is at.
>
Few docs realize they can script buprenorphine w/o
hassles from the DEA.
Otherwise I think you need a consult with a different top psycopharmacologist.
Posted by Phillipa on October 22, 2006, at 13:05:06
In reply to Re: Lyrica left me feeling worse., posted by notfred on October 22, 2006, at 12:53:15
If you google bupropherine it says your doc can prescribe even if you're not addicted to opiods. Love Phillipa But even with VNS my pdoc suggested to for me as she said you can always remove it and change the meds? Love Phillipa I will goggle it later.
Posted by Phillipa on October 22, 2006, at 13:06:06
In reply to Re: Lyrica left me feeling worse. » notfred, posted by Phillipa on October 22, 2006, at 13:05:06
Posted by emme on October 22, 2006, at 13:57:13
In reply to Lyrica left me feeling worse., posted by SLS on October 21, 2006, at 17:06:31
Soctt,
I'm so sorry it didn't work out and that you're feeling bleak. I wish I had a brilliant suggestion, but it looks like the other folks have posted some good input. Please don't give up hope. We're rooting for you.
em
Posted by Phillipa on October 22, 2006, at 19:00:39
In reply to Re: Lyrica left me feeling worse., posted by emme on October 22, 2006, at 13:57:13
Scott here is one link to VNS it starts off with seizures and goes to TRD. Love Phillipa ps includes who qualifies, insurance, donations, etc.
http://www.bcm.edu/psych/mdoc/research/vns.html
Posted by SLS on October 23, 2006, at 7:50:54
In reply to Re: Lyrica left me feeling worse. » SLS, posted by Racer on October 22, 2006, at 12:46:02
Hi Racer.
> Remind me: did you try the TMS? Any effect? If not, how about giving it a try now? If nothing else, it's not as permanent as the VNS implant...
I would give TMS a try were it more locally available. There was a study in NYC, but it really wasn't feasible for me to go there as frequently as would be necessary. I am hoping that it gets approved by the FDA sometime over the next year.
> I'd email you the new psychopharmacologist I just saw, if I could, because he does seem to be pretty systematic, and specializes in TRD. Since I can't, though, may I remind you that you've told me you always forget that tianepine is out there as something you haven't tried?
Yes, you may remind me. :-)
I guess I should start getting my doctor prepared for this thing.
I've tried reboxetine and moclobemide. Both drugs made me profoundly worse. I have not tried an opioid yet. I guess I'll be left to experiment on my own with that.
Thanks for caring. It means a lot to me.
- Scott
Posted by michael on October 24, 2006, at 3:11:57
In reply to Lyrica left me feeling worse., posted by SLS on October 21, 2006, at 17:06:31
> Lyrica did something to leave me feeling worse. I discontinued it over a week ago. Neurontin affected me the same way. The exacerbation of my condition does not become apparant until it is unmasked by the discontinuation the drug.
>
> I have no idea how long I will be feeling worse for.
>
> I have not been in a very healthy state of mind.
>
> My outlook is bleak. I feel that I have run out of options.
>
>
> - Scott
Hey Scott,Sorry to hear that things aren't going better. I wish that I had some ideas to offer, but to be honest, I usually look to you for that kind of insight, rather than being able to offer it TO you...
Nonetheless, I'll of course drop you a line, should I come across anything that seems like it may be of use to you. [as I've done in the past]
And while I'm writing, thanks for your thoughts & feedback on my TCA thread. I sincerely appreciate it very much.
Just for the record, although I don't come to PB too often these days, when I do, one of the primary reasons is to get your thoughts & opinions. Over the years, I've found that many people think that they know what they're talking about (here at PB as well as elsewhere).
While experiential feedback is always valid & important & helpful, the key to finding useful info is often knowing who actually DOES know what they're talking about - such as yourself. Since I don't come here as often, I don't "know" many of the people here these days... so I often rely on some of the old-timers that I recognize.
[Btw - Does Elizabeth ever post any more? ...or Cam? ...or Andrew? I know that I've seen Jahl & Racer, and some of the others - don't remember everyone just now from the circa 2000 gang...]
In any case, thanks again for your help over the years. I'm not one who's big on praying, but fwiw, you are often in my thoughts. I look forward to the day that I read that you've found some significant relief!
Fwiw, I admire your perseverance, and I'm pulling for you. I hope that you feel better [or at least less bad] soon. I know it's easier said than done, but keep hanging in there. Your determination to persevere inspires me to do the same.
Talk to you later,
michael
Posted by michael on October 24, 2006, at 3:25:15
In reply to Re: Lyrica left me feeling worse. » notfred, posted by SLS on October 22, 2006, at 7:51:17
> > Have you tried Subutex or any other opioids ?
>
>
> No, I haven't. Do you think giving oxycodone a quick trial would tell me anything? I think I can dig up some Percocets to work with. I ran buprenorphine past my doctor once. He said that if it really worked, you would hear more about it. I guess that tells you where his head is at.
>
>
> - ScottHey Scott,
Just a thought... Didn't Elizabeth have some success w/buprenorphine? If she's no longer around, it may be of use to check the archives for some of her posts on the subject...?
As I said, just a thought...
As for the Percocet - if you do give that a shot [provided, of course, that it's safe w/whatever else you're taking] - shouldn't you be able to determine if it helps relatively quickly? Don't know if that's actually the case, or not - you probably know better than I do. I just mention that since - if I am correct - it wouldn't necessitate a long, drawn-out trial...
...just another couple of thoughts.
michael
Posted by Racer on October 24, 2006, at 12:50:28
In reply to Re: Lyrica left me feeling worse. » SLS, posted by michael on October 24, 2006, at 3:25:15
Scott, remember a while back I sent you an article about short term, low dose dexamethasone to jump start response? Did you ever try that? The results of that study, which was on severe depression, not mild to moderate, were pretty staggering...
(I think I sent that article... Was that one I couldn't find? Hm... Maybe I should look again...)
Again, you know much more than I do about any of this. All I know is that you're a warm, and wonderful person, whom I care about deeply.
Posted by corafree on October 24, 2006, at 14:48:43
In reply to Lyrica left me feeling worse., posted by SLS on October 21, 2006, at 17:06:31
I liked Lyrica at the beginning, and NOW 'I can't really feel any good from it either'. How high in dosage did you go S?
Do you have to take massive doses of certain meds(?), 'cuz I do. If I went back on Eff-XR, I'd have to go up to 300mg in wks.
Hey! If your tall and thin w/ long dark hair, . . . you might be 'my identical' out there!
Hardy har har.
I'm moving slow today. Not enough chemical stimulation in my brain I guess. I lost a thread too.
love, cf
Posted by ed_uk on October 24, 2006, at 15:38:07
In reply to Re: Lyrica left me feeling worse. » Racer, posted by SLS on October 23, 2006, at 7:50:54
Hi Scott
Which opioid do you have at home?
Ed
Posted by SLS on October 24, 2006, at 17:47:18
In reply to Hm... 'Nother thought for SLS..., posted by Racer on October 24, 2006, at 12:50:28
> Scott, remember a while back I sent you an article about short term, low dose dexamethasone to jump start response?
Hmm. I really don't remember. It sounds interesting, though.
I saw my doctor today. He is more amenable to combining Nardil with nortriptyline, but not right away. He wants to investigate thyroid function first. Wilson's Syndrome. My TSH was 1.5 last week, which is acceptable. I'll be taking my temperature over the next few days to see if it is running low. If it is, he wants to add Armour thyroid.
- Scott
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