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Dr. Bob is Robert Hsiung, MD,
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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
Posted by SLS on October 24, 2006, at 17:59:01
In reply to Re: Lyrica left me feeling worse. » SLS, posted by corafree on October 24, 2006, at 14:48:43
> 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?
I was up to 600mg for several weeks.
> 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.
When I first responded to medications, it was at lower dosages. Now, I need high dosages just to get the smallest of improvements.
> I'm moving slow today.
Me too. It is painful at times. There is anxiety too. I'm glad the day is almost over. Maybe tomorrow will be better.
- Scott
Posted by SLS on October 24, 2006, at 18:00:43
In reply to Re: Lyrica left me feeling worse. » SLS, posted by ed_uk on October 24, 2006, at 15:38:07
> Hi Scott
>
> Which opioid do you have at home?
Oxycodone.
- Scott
Posted by ed_uk on October 25, 2006, at 12:43:06
In reply to Re: Lyrica left me feeling worse. » ed_uk, posted by SLS on October 24, 2006, at 18:00:43
Hi Scott
>Oxycodone
Will you try it?
Ed
Posted by corafree on October 25, 2006, at 13:33:37
In reply to Lyrica left me feeling worse., posted by SLS on October 21, 2006, at 17:06:31
This is prob' my 'self-esteem' talking, but, ... I get the feeling that when I talk to you, Scott, you sorta' throw it off your shoulder, like time-consuming, useless babble.
When I post to one person in particularly, and am not responded to, it hurts my feelings.
Whoa, do I wish I didn't have any feelings!
love, cf
Posted by corafree on October 25, 2006, at 13:39:18
In reply to Re: Lyrica left me feeling worse. » corafree, posted by SLS on October 24, 2006, at 17:59:01
OMG, I stuck both feet in my big fat mouth!!!
I'm so sincerely sorry, Scott!
love, cf
ps: Couldn't stand it, so back on Eff-XR, like an addit. Let me know if I could talk w/ you privately?
Posted by SLS on October 25, 2006, at 14:11:17
In reply to Re: Lyrica left me feeling worse. » SLS, posted by ed_uk on October 25, 2006, at 12:43:06
> Hi Scott
>
> >Oxycodone
>
> Will you try it?
Right now, I am very indecisive about things. Maybe over the weekend.It looks like it is going to be weeks before things return to the way they were before I started Lyrica. Things have not improved much over the course of the last 10 days. Today was a little better than yesterday, but it comes and goes in intensity.
I am fighting off some pretty scary thoughts and derealization.
- Scott
Posted by corafree on October 25, 2006, at 15:14:27
In reply to Re: Lyrica left me feeling worse. » ed_uk, posted by SLS on October 25, 2006, at 14:11:17
I'd like to chime in here to E's post to say feel you should try it.
Think Lyrica 'was important' 2U. Maybe go back 2 original dose, just stay there.
love, cf
Posted by ed_uk on October 25, 2006, at 16:42:40
In reply to Re: Lyrica left me feeling worse. » ed_uk, posted by SLS on October 25, 2006, at 14:11:17
Hi Scott
Do you remember how long it took you to recover after you stopped Neurontin? Perhaps you will recover at a similar rate.
Take care
Ed
Posted by Crazy Horse on October 25, 2006, at 17:58:11
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.
>
>
> - ScottScott, I apologise for not posting earlier..I have not been to the PB website for about a week. I am sorry Lyrica didn't work for you, and now you feel even worse. Why not try ECT Scott? I had 22 treatments in 1997..and they helped me very much. How?..i don't really know..i don't think anyone really knows how they work, but they do! I went into the hospital (inpatient) wanting to die, and left 2 mos. later with a smile on my face. Memory loss was not too bad, and it was only short term. Now my memory is really good..what was your name again..LOL. Really Scott, please consider ECT..please, please, i really think it will help you.
-Monte
Posted by SLS on October 25, 2006, at 18:19:00
In reply to Re: Lyrica left me feeling worse. » SLS, posted by corafree on October 25, 2006, at 15:14:27
Hi CF.
:-)
> I'd like to chime in here to E's post to say feel you should try it.
Thanks for the support. You are probably right. I won't know until I do.
> Think Lyrica 'was important' 2U. Maybe go back 2 original dose, just stay there.I know it looks that way. I think the drug was actually masking the damage it was doing.
I am convinced that Lyrica is not the right drug for me. It's too bad. It would have been a convenient solution.
- Scott
Posted by SLS on October 25, 2006, at 18:28:03
In reply to Re: Lyrica left me feeling worse. » SLS, posted by ed_uk on October 25, 2006, at 16:42:40
> Do you remember how long it took you to recover after you stopped Neurontin? Perhaps you will recover at a similar rate.
You know, I have been unable to remember exactly how long it took for me to return to baseline after taking Neurontin. It was over 6 years ago, and Parnate plus desipramine were added before things had time to settle. It was more than a few weeks, though.
One thing that both drugs have in common is that they bind to the alpha2delta subunit of the calcium channel. I guess I should be wary of drugs that do this in the future.
- Scott
Posted by SLS on October 25, 2006, at 18:41:16
In reply to Re: Lyrica left me feeling worse., posted by Crazy Horse on October 25, 2006, at 17:58:11
Hi Monte.
> Scott, I apologise for not posting earlier..I have not been to the PB website for about a week. I am sorry Lyrica didn't work for you, and now you feel even worse. Why not try ECT Scott?
I had a series of treatments in 1991.
> I had 22 treatments in 1997..and they helped me very much.
Wow. What kind? Unilateral? Bilateral? Right or left?
How many treatments did it take before you began to feel better?
How long did the improvement last for?
I actually experienced a few hours of improvement after my fifth treatment. It was very encouraging. However, I saw no further response despite ten more treatments.
I am actually beginning to consider VNS more seriously. I never thought I would. I am also hoping that rTMS will become available relatively soon. Of course, rTMS is non-invasive and would probably make more sense to wait for.
- Scott
Posted by Phillipa on October 25, 2006, at 19:40:24
In reply to Re: Lyrica left me feeling worse. » Crazy Horse, posted by SLS on October 25, 2006, at 18:41:16
Scott which meds would you take do you think if you decided on VNS? Love Jan
Posted by zeugma on October 25, 2006, at 20:13:18
In reply to Re: Lyrica left me feeling worse. » SLS, posted by Phillipa on October 25, 2006, at 19:40:24
it seems like this might be implicated in your pathology.
perhaps it would be worth learning more about this ion.
It seems that NMDA receptor activation allows Ca2+ influx, and NMDA antagonists are thought to have AD properties. I'm just thinking out loud.
-z
Posted by corafree on October 25, 2006, at 20:18:05
In reply to Re: Lyrica left me feeling worse. » corafree, posted by SLS on October 25, 2006, at 18:19:00
Tks 4 bein' nice 2 me. Don't deserve much after 'my whiney reaction' this a.m.
I've seen quite a few pain docs. I'm on Flexeril 3xday, Voltaren 2x day, oxycodone 7.5/500or325 3x a day, Soma 50mg h.s., Lyrica 75mg h.s. Then on two psych meds.
I've seen quite a few pain docs. Only trigger points are effective and I'm not a surgical candidate.
One pain doc I saw (just got folder out), I grabbed a pen when he started talking and I've written here on his flyer I brought home, amitriptyline and Keppra. I don't know anything re: Keppra. Just FYI.
As 2 Lyrica, I don't have bad side effect on 75mg h.s. But, did when increased. Tried taking during day, NOT.
Neurontin, bad side effect, can't recall, d.c.'d.; same w/ Topomax.
love, cf
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