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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by inanimate peanut on January 21, 2010, at 23:04:19
Ok, here is the long awaited miracle list from Stanford:
Group 1:
1. Provigil
2. Cytomel
3. MirapexGroup 2 (no particular order)
-Saphris
-switch MAOIs to Marplan or Nardil
-add Dynakirk or Nimodepine (calcium channel blockers)
-add Depakote or TegretolGroup 3 (no particular order)
Clozaril (would be higher except for side effects)
ECT (to help with washout)
washout from Parnate back to SSRIsWhy Peanut hates Stanford's List (negativity warning-- I'm very depressed right now which is coloring my impressions):
1. Provigil-- already tried it, didn't help-- Stanford doc says maybe dose not high enough; I think there's a snowball's chance in hell that this is the case. I think I'm going to waste 4 weeks of my time on a drug that's already proven not to work for me. Don't forget my March 26 deadline-- God knows I can't2. Cytomel-- I think this has a small chance of working. I also know that my endocrinologist wouldn't even listen to me about prescribing it. My pdoc won't prescribe since I'm under the care of an endo already for my thyroid. I can go ahead and try every endo in town at $40 a pop until I find one that will try something that may or may not work (which I am seriously considering)
3. Mirapex- I don't think there's much evidence on this one. I also know you start at .125 and increase by .125 every 5 days until you get to the dose of 1.75. This is due to nausea, which doesn't sound fun. This also is not working with my deadline issues.
-Saphris- it's new enough that he doesn't know if it will help or not so I might as well try it-- how encouraging.
-switching MAOIs-- Are you freaking kidding me? If I go off a drug it will not work after I go back on it. I've got probably 40 more years to live with this disorder. I'm going to need every drug there is when the others poop out-- why would I waste a perfectly good drug on the slight chance another would work better? I'll probably be on Marplan and Nardil someday when Parnate no longer works. As long as it's working, you'll never see me leave Parnate.
-Dynokirk or Nimodipine-- has anyone even heard of these being used? This sounds like the land of "a couple of small studies showed some promise..." I need to look into it more, but I'm not holding my breath
-Depakote or Tegretol-- I'm not cycling; I pretty much just stay depressed. There's some small evidence that Depakote helps bipolar depression. I'm not looking forward to the weight gain.
-Clozaril-- I know that this works for alot of people. I've not heard of it working for bipolar depression. I've also heard that you need a stimulant to even get through life with its sedation, and my doc won't prescribe stimulants with Parnate. Again with the weight gain, which is actually the least of my concerns here.
-ECT- I won't even discuss this at this point. I looked at it again earlier this year. I considered it when I was in hell. If the parnate stopped working and nothing else would work, I would consider it again. As long as something is partially working, it's not an option for me.
-switching to SSRIs- I don't really have any that are left to work, which is why I switched to Parnate in the first place. Also see above about running out of meds to try in 40 years
So, that's it. That's my life, I don't like it. I think the odds are stacked against me. I think we're throwing out last 5 balls at the wall and hoping something will stick. That's not comforting. Stanford doc says he usually doesn't see the disorder so severe in someone my age-- that was crushing when I thought of the implications for my future.
Why some of my favorites were rejected:
1. Nortriptyline- this has always been my best option-- Stanford doc is with my doc on this one-- too dangerous
2. Remeron- Stanford doc is worse than my doc on this one-- too dangerous
3. Neurontin and Zonisamide- says neither are mood stabilizers-- says Neurontin is an anxiety med only
4. Stimulants-- too dangerousNever mind the fact that if these were all really this dangerous, some of my favorite babblers would be dead.
All in all, I wish I hadn't gone. I liked it better when I had my med list that had more options. But, if anyone has been on the social board, you know I am more than a little biased right now, and I understand that, so take what I say with a grain of salt.
I don't know-- I'll probably just work through the list in the order he gave me, with the exception of switching to a different MAOI, which I refuse to do.
Well, what do you think?
Posted by Phillipa on January 21, 2010, at 23:41:17
In reply to Peanut's Stanford Med List, posted by inanimate peanut on January 21, 2010, at 23:04:19
Peanut seriously? It sounds like a lot of options and combos to try. I heard good things about the saphris is it? Talked to drug reps yesterday at my pdocs they were real although they represented lexapro they had a lot of thoughts for me. But what struck me was they told me how lexapro came here seems the now president of lexapro company was a vitamin and candy salesman was in Europe to search for a med for his own Son who was depressed and somehow lexapro was born from what he learned in Europe. Reason I said all this is the sapris sp? is the same man's new med. So it could be promising. Also providgil is loved by some and you can adjust the dosing. As for the cytomel no reason your pdoc can't prescribe it for you if you show her/him the list from Stanford. And you mention 40 years of meds there will be so many more and new forms of testing to pick the right one so time definitely on your side. I will ha ha be over 100 then. Now there is some perspective for ya. Love Phillipa
Posted by janejane on January 22, 2010, at 8:32:37
In reply to Peanut's Stanford Med List, posted by inanimate peanut on January 21, 2010, at 23:04:19
Hi Peanut,
I'm not knowledgeable enough to comment on the specific suggestions, but I do get the sense that the Stanford doc was extremely conservative in his approach. This surprises me since I thought they would be more cutting edge.
Do you remember a while back I gave you a link to a list of the supposed best p-docs in the country? There was one in your state (not in mine, though, ugh!). I don't know whether you ever looked him up, but maybe that's another avenue to try? Here's the post about it:
http://www.dr-bob.org/babble/20091227/msgs/932224.html
Here's another possible information source for you that I came across recently (don't know whether you've already seen this one):
http://psychotropical.com/question_advice.shtml
He seems to be an expert in MAOIs.
Posted by Justherself54 on January 22, 2010, at 9:00:10
In reply to Peanut's Stanford Med List, posted by inanimate peanut on January 21, 2010, at 23:04:19
I'm so sorry that you not only had a horrific trip getting there but the news you received wasn't all that great.
I think the suggestion to switch to Nardil is a good one. I wasn't able to handle the side effects of MAOI's but Nardil and Parnate are two different acting meds in my experience. Nardil killed my anxiety and depression and I was able to socialize like a butterfly. However, I had some bizarre side effects and had to discontinue it, however, that's just me. There are posters here that have gone off and back on Nardil and it has worked for them again. I've been on Parnate 3 times and received partial benefit but wasn't able to continue due to side effects. However, unlike retrying SSRI's, it was working again.
I know you feel battered and beaten and hopeless right now and are under a lot of pressure to meet the March deadline. I think you should have a Plan B in place in case you aren't feeling well enough to return to work.
Try to step back and just allow yourself to process what's happened..you're going to get some great advice from fellow babblers..
Bipolar depression is truly awful. I still grieve over what it has taken away from me. However, I also know that it has given me some gifts along the way.
Keep posting..and take comfort in the fact that so many here know exactly what you are going through and feeling right now.
Posted by willey on January 22, 2010, at 11:17:24
In reply to Re: Peanut's Stanford Med List » inanimate peanut, posted by janejane on January 22, 2010, at 8:32:37
Very very true,when they took me off parnate,i looked up every doc in the city,i had a script i read to the answering clerk to have the doc call me back conerning if they did work with maois.
And after about 2 days i found one a good drive away,asking him to add something once he looked at me like GOD ARE YOU CRAZY,so now i say nothing get my parnate and well like boxing i take a different swing now to get what i neeed.
Posted by inanimate peanut on January 22, 2010, at 12:54:33
In reply to Re: Peanut's Stanford Med List » inanimate peanut, posted by janejane on January 22, 2010, at 8:32:37
Do you know how psych's get on that list? I'm just interested whether it's by user rating, training, etc.?
Posted by janejane on January 22, 2010, at 13:19:54
In reply to Re: Peanut's Stanford Med List » janejane, posted by inanimate peanut on January 22, 2010, at 12:54:33
> Do you know how psych's get on that list? I'm just interested whether it's by user rating, training, etc.?
I'm guessing it's put together by the guy who runs the site, but I have no idea. I got the link from that babble post.
Posted by janejane on January 22, 2010, at 13:26:04
In reply to Re: Peanut's Stanford Med List » janejane, posted by inanimate peanut on January 22, 2010, at 12:54:33
I should take my own advice... I looked at the original post again, and emilyp says she believes those docs are comfortable prescribing combos and going beyond the PDR. She also suggested that maybe your doc could recommend someone who you could see for the short-term if she doesn't feel comfortable giving you more than 60mg parnate.
Posted by inanimate peanut on January 22, 2010, at 13:57:10
In reply to Re: Peanut's Stanford Med List » inanimate peanut, posted by janejane on January 22, 2010, at 13:26:04
Nothing higher than 60mg Parnate seemed to help, so I'm off that kick. I would like a doc willing to prescribe Nortriptyline with Parnate, though, so I wonder if I should look into that.
Posted by bulldog2 on January 22, 2010, at 15:40:08
In reply to Peanut's Stanford Med List, posted by inanimate peanut on January 21, 2010, at 23:04:19
> Ok, here is the long awaited miracle list from Stanford:
>
> Group 1:
> 1. Provigil
> 2. Cytomel
> 3. Mirapex
>
> Group 2 (no particular order)
> -Saphris
> -switch MAOIs to Marplan or Nardil
> -add Dynakirk or Nimodepine (calcium channel blockers)
> -add Depakote or Tegretol
>
> Group 3 (no particular order)
> Clozaril (would be higher except for side effects)
> ECT (to help with washout)
> washout from Parnate back to SSRIs
>
> Why Peanut hates Stanford's List (negativity warning-- I'm very depressed right now which is coloring my impressions):
> 1. Provigil-- already tried it, didn't help-- Stanford doc says maybe dose not high enough; I think there's a snowball's chance in hell that this is the case. I think I'm going to waste 4 weeks of my time on a drug that's already proven not to work for me. Don't forget my March 26 deadline-- God knows I can't
>
> 2. Cytomel-- I think this has a small chance of working. I also know that my endocrinologist wouldn't even listen to me about prescribing it. My pdoc won't prescribe since I'm under the care of an endo already for my thyroid. I can go ahead and try every endo in town at $40 a pop until I find one that will try something that may or may not work (which I am seriously considering)
>
> 3. Mirapex- I don't think there's much evidence on this one. I also know you start at .125 and increase by .125 every 5 days until you get to the dose of 1.75. This is due to nausea, which doesn't sound fun. This also is not working with my deadline issues.
>
> -Saphris- it's new enough that he doesn't know if it will help or not so I might as well try it-- how encouraging.
>
> -switching MAOIs-- Are you freaking kidding me? If I go off a drug it will not work after I go back on it. I've got probably 40 more years to live with this disorder. I'm going to need every drug there is when the others poop out-- why would I waste a perfectly good drug on the slight chance another would work better? I'll probably be on Marplan and Nardil someday when Parnate no longer works. As long as it's working, you'll never see me leave Parnate.
>
> -Dynokirk or Nimodipine-- has anyone even heard of these being used? This sounds like the land of "a couple of small studies showed some promise..." I need to look into it more, but I'm not holding my breath
>
> -Depakote or Tegretol-- I'm not cycling; I pretty much just stay depressed. There's some small evidence that Depakote helps bipolar depression. I'm not looking forward to the weight gain.
>
> -Clozaril-- I know that this works for alot of people. I've not heard of it working for bipolar depression. I've also heard that you need a stimulant to even get through life with its sedation, and my doc won't prescribe stimulants with Parnate. Again with the weight gain, which is actually the least of my concerns here.
>
> -ECT- I won't even discuss this at this point. I looked at it again earlier this year. I considered it when I was in hell. If the parnate stopped working and nothing else would work, I would consider it again. As long as something is partially working, it's not an option for me.
>
> -switching to SSRIs- I don't really have any that are left to work, which is why I switched to Parnate in the first place. Also see above about running out of meds to try in 40 years
>
> So, that's it. That's my life, I don't like it. I think the odds are stacked against me. I think we're throwing out last 5 balls at the wall and hoping something will stick. That's not comforting. Stanford doc says he usually doesn't see the disorder so severe in someone my age-- that was crushing when I thought of the implications for my future.
>
> Why some of my favorites were rejected:
> 1. Nortriptyline- this has always been my best option-- Stanford doc is with my doc on this one-- too dangerous
> 2. Remeron- Stanford doc is worse than my doc on this one-- too dangerous
> 3. Neurontin and Zonisamide- says neither are mood stabilizers-- says Neurontin is an anxiety med only
> 4. Stimulants-- too dangerous
>
> Never mind the fact that if these were all really this dangerous, some of my favorite babblers would be dead.
>
> All in all, I wish I hadn't gone. I liked it better when I had my med list that had more options. But, if anyone has been on the social board, you know I am more than a little biased right now, and I understand that, so take what I say with a grain of salt.
>
> I don't know-- I'll probably just work through the list in the order he gave me, with the exception of switching to a different MAOI, which I refuse to do.
>
> Well, what do you think?
>
>If you are diagnosed with bipolar than tegretol might help with that and and also add some add some ad effect. You're at a really high dose of parnate. Is you're remission good? If not that might be why they are suggesting nardil or marplan. Marplan is more weight neutral than nardil and also better on anxiety than parnate.
Posted by willey on January 22, 2010, at 16:09:06
In reply to Re: Peanut's Stanford Med List » janejane, posted by inanimate peanut on January 22, 2010, at 12:54:33
Heres how i do it,u do it the old fashion way cause there are many p-docs not on the net.
You call each office,explain to the nurse you have been on maois for xx amount of time,whether u choose to stretch the truth here as to perhaps your new in the area or your doc retired well thats up to you,regardless you have the right to ask this,
I am looking for a p doc for MED MANAGMENT,i already have been stable on a med,but its a moai,can you please find out if the dr so so would be willing to provide me with maois.
Posted by gman22 on January 22, 2010, at 16:58:07
In reply to Re: Peanut's Stanford Med List » janejane, posted by inanimate peanut on January 22, 2010, at 12:54:33
It's hard to believe you can't find a doc to give you nortrip. and parnate. The nortrip actually makes parnate safer.
Posted by floatingbridge on January 23, 2010, at 1:33:48
In reply to Peanut's Stanford Med List, posted by inanimate peanut on January 21, 2010, at 23:04:19
Hey, peanut. I agree w/ Jane and you-- seems the options are neither cutting edge nor bold.
Are the groups organized like, one from group, one from group two? (I apologize for being dense.
Provigil. Have you tried it w/ parnate?
Nardil does work for some when other maoi's fail. Marlpan I have read little about. Many find maoi's a med they can return to after.
I wish I could offer you some real
information. My first impulse/ thought
after reading this thread tonight is that
there is something to be said for breaking this depression now, and allowing some concerns of future treatment rest. I suppose this is hard-earned advice that I need to practice
myself.Someone on social (willful?) said
something eloquent about not allowing doctors to prognosticate. I wonder how the docs disclosed to you their
assessment of your illness. I've been on the receiving end of some real detached, damaging assessments and professional opinions.I'm sorry life looks like sh*t's creek right now.
fb
Posted by bulldog2 on January 25, 2010, at 17:29:29
In reply to Peanut's Stanford Med List, posted by inanimate peanut on January 21, 2010, at 23:04:19
> Ok, here is the long awaited miracle list from Stanford:
>
> Group 1:
> 1. Provigil
> 2. Cytomel
> 3. Mirapex
>
> Group 2 (no particular order)
> -Saphris
> -switch MAOIs to Marplan or Nardil
> -add Dynakirk or Nimodepine (calcium channel blockers)
> -add Depakote or Tegretol
>
> Group 3 (no particular order)
> Clozaril (would be higher except for side effects)
> ECT (to help with washout)
> washout from Parnate back to SSRIs
>
> Why Peanut hates Stanford's List (negativity warning-- I'm very depressed right now which is coloring my impressions):
> 1. Provigil-- already tried it, didn't help-- Stanford doc says maybe dose not high enough; I think there's a snowball's chance in hell that this is the case. I think I'm going to waste 4 weeks of my time on a drug that's already proven not to work for me. Don't forget my March 26 deadline-- God knows I can't
>
> 2. Cytomel-- I think this has a small chance of working. I also know that my endocrinologist wouldn't even listen to me about prescribing it. My pdoc won't prescribe since I'm under the care of an endo already for my thyroid. I can go ahead and try every endo in town at $40 a pop until I find one that will try something that may or may not work (which I am seriously considering)
>
> 3. Mirapex- I don't think there's much evidence on this one. I also know you start at .125 and increase by .125 every 5 days until you get to the dose of 1.75. This is due to nausea, which doesn't sound fun. This also is not working with my deadline issues.
>
> -Saphris- it's new enough that he doesn't know if it will help or not so I might as well try it-- how encouraging.
>
> -switching MAOIs-- Are you freaking kidding me? If I go off a drug it will not work after I go back on it. I've got probably 40 more years to live with this disorder. I'm going to need every drug there is when the others poop out-- why would I waste a perfectly good drug on the slight chance another would work better? I'll probably be on Marplan and Nardil someday when Parnate no longer works. As long as it's working, you'll never see me leave Parnate.
>
> -Dynokirk or Nimodipine-- has anyone even heard of these being used? This sounds like the land of "a couple of small studies showed some promise..." I need to look into it more, but I'm not holding my breath
>
> -Depakote or Tegretol-- I'm not cycling; I pretty much just stay depressed. There's some small evidence that Depakote helps bipolar depression. I'm not looking forward to the weight gain.
>
> -Clozaril-- I know that this works for alot of people. I've not heard of it working for bipolar depression. I've also heard that you need a stimulant to even get through life with its sedation, and my doc won't prescribe stimulants with Parnate. Again with the weight gain, which is actually the least of my concerns here.
>
> -ECT- I won't even discuss this at this point. I looked at it again earlier this year. I considered it when I was in hell. If the parnate stopped working and nothing else would work, I would consider it again. As long as something is partially working, it's not an option for me.
>
> -switching to SSRIs- I don't really have any that are left to work, which is why I switched to Parnate in the first place. Also see above about running out of meds to try in 40 years
>
> So, that's it. That's my life, I don't like it. I think the odds are stacked against me. I think we're throwing out last 5 balls at the wall and hoping something will stick. That's not comforting. Stanford doc says he usually doesn't see the disorder so severe in someone my age-- that was crushing when I thought of the implications for my future.
>
> Why some of my favorites were rejected:
> 1. Nortriptyline- this has always been my best option-- Stanford doc is with my doc on this one-- too dangerous
> 2. Remeron- Stanford doc is worse than my doc on this one-- too dangerous
> 3. Neurontin and Zonisamide- says neither are mood stabilizers-- says Neurontin is an anxiety med only
> 4. Stimulants-- too dangerous
>
> Never mind the fact that if these were all really this dangerous, some of my favorite babblers would be dead.
>
> All in all, I wish I hadn't gone. I liked it better when I had my med list that had more options. But, if anyone has been on the social board, you know I am more than a little biased right now, and I understand that, so take what I say with a grain of salt.
>
> I don't know-- I'll probably just work through the list in the order he gave me, with the exception of switching to a different MAOI, which I refuse to do.
>
> Well, what do you think?
>
>I really don't think these lists are all that bad. They are actually very reasonable. They seem to be synergistic combos. I think we need to give peanut hope they can work rather than just agree with her.The place has a good rep.
Posted by inanimate peanut on January 26, 2010, at 18:13:06
In reply to Peanut's Stanford Med List, posted by inanimate peanut on January 21, 2010, at 23:04:19
Thanks to everyone for feedback. My doc and I are working right now on trying to find someone to prescribe Cytomel. I think we're not going to try Provigil again at this point because my doc doesn't like combining it with Parnate and because I was on 200mg before with no results. I still feel pretty hopeless about the visit and the list but my meds are stable again so that's helping. I still think trying Remeron wouldn't be a bad idea, but oh well... I'll keep you posted if anything helps.
Posted by janejane on January 27, 2010, at 6:30:55
In reply to Re: Peanut's Stanford Med List, posted by inanimate peanut on January 26, 2010, at 18:13:06
Thanks for the update, Peanut. I'm glad your meds are stable again.
This is the end of the thread.
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