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Dr. Bob is Robert Hsiung, MD,
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Posted by SLS on September 7, 2011, at 16:54:21
In reply to Re: 40% down to 25% » SLS, posted by floatingbridge on September 7, 2011, at 16:14:21
> > 40% was nice for a few days. Unfortunately, it didn't last. I remain at a 25% improvement as of two days ago. After being on Nardil for a whole year, this is wholly inadequate. I don't feel very much different than I did a year ago. I made an appointment to see my doctor tomorrow. I would like to discontinue Nardil and replace it with either Pristiq or Effexor.
> >
> > I would like to thank everyone for their help and support over the years.
> >
> > I haven't given up.
> >
> >
> > - Scott
>
> Well, shista, Scott.
>
> Have you tried either?
>
> Please let anyone here know ways we can support you through the wash and start up and any other way.Thanks.
- Scott
Posted by Zonked on September 7, 2011, at 20:58:51
In reply to 40% down to 25%, posted by SLS on September 7, 2011, at 13:46:01
Scott, I don't understand why given all your conventional treatment failures you haven't been given opiods. To me, it's inexcusable. What is your MD's justification? How much more do you need to suffer? You're entitled to a decent quality of life. Sure, there are drawbacks, but what does it matter now? Cycling you through mildly effective or ineffective treatments seems ludicrous to me at this point. Especially when there are things sitting on American pharmacy shelves RIGHT NOW which way help you. I am not blaming you, but the system. Why won't your doc give you bupe, stimulants or oxycontin? If he's concerned about potential abuse, couldn't he start you out with a small quantity and see you a bit more frequently at first? I hope it's not that he's afraid of the DEA. That's not reason for you to suffer. Sorry if I sound a bit frustrated... it's with a medical system that likely can return you to a normal level of functioning but hasn't because of drug addicts. It doesn't seem right.
Posted by Phillipa on September 7, 2011, at 20:59:00
In reply to 40% down to 25%, posted by SLS on September 7, 2011, at 13:46:01
Think has anything to do with the daylight hours? Less light? Maybe a light box would help? Phillipa
Posted by Lamdage on September 8, 2011, at 3:06:42
In reply to Re: 40% down to 25% » SLS, posted by Phillipa on September 7, 2011, at 20:59:00
Scott sorry to hear that. Let us know what you and your doc are considering now!
Posted by Solstice on September 8, 2011, at 7:47:58
In reply to 40% down to 25%, posted by SLS on September 7, 2011, at 13:46:01
> 40% was nice for a few days. Unfortunately, it didn't last. I remain at a 25% improvement as of two days ago. After being on Nardil for a whole year, this is wholly inadequate. I don't feel very much different than I did a year ago. I made an appointment to see my doctor tomorrow. I would like to discontinue Nardil and replace it with either Pristiq or Effexor.
>
> I would like to thank everyone for their help and support over the years.
>
> I haven't given up.
Scott -Your courageous and steadfast 'fighting the fight' is an inspiration. During my times in the valley of it, I've often been a big baby and toyed with the idea of giving up.
As I've been reading your threat, I've become increasingly interested in how you go about rating where you are at a given point (0% vs 15%, 25%, 40%). I read where one of these included being able to drive, but unable to work. It makes sense to me that various specific characteristics of functioning would be a great way to assess whether one is at 25%.. vs 50%.. vs 75%.
Have you constructed a list of characteristics of functioning that helps you determine your level of functioning? For example, I guess at the social level, there would be complete withdrawal, vs. being able to tolerate receiving phone calls from certain people, vs. willing & able to place phone calls to certain people, vs. being able to tolerate receiving phone calls from people who are not in the inner circle, vs. being willing to go out and participate in various types of social interaction (i.e. it's one thing to go to Sonic with a trusted friend and eat in the car at the drive-thru, vs. going out with a group for a big meal at Logan's Steakhouse). Anyway, do you have behavioral functioning characteristics categorized in such a way that they end up putting you at a certain percentage of functioning? What it brings to mind for me is the Glascow Coma Scale for assessing level of coma.
Solstice
Posted by Solstice on September 8, 2011, at 8:36:03
In reply to Re: 40% down to 25%, posted by Solstice on September 8, 2011, at 7:47:58
> > 40% was nice for a few days. Unfortunately, it didn't last. I remain at a 25% improvement as of two days ago. After being on Nardil for a whole year, this is wholly inadequate. I don't feel very much different than I did a year ago. I made an appointment to see my doctor tomorrow. I would like to discontinue Nardil and replace it with either Pristiq or Effexor.
> >
> > I would like to thank everyone for their help and support over the years.
> >
> > I haven't given up.
>
>Scott -
Your courageous and steadfast 'fighting the fight' is an inspiration. During my times in the valley of it, I've often been a big baby and toyed with the idea of giving up.
As I've been reading your (s/b *thread*), I've become increasingly interested in how you go about rating where you are at a given point (0% vs 15%, 25%, 40%). I read where one of these included being able to drive, but unable to work. It makes sense to me that various specific characteristics of functioning would be a great way to assess whether one is at 25%.. vs 50%.. vs 75%.
Have you constructed a list of characteristics of functioning that helps you determine your level of functioning? For example, I guess at the social level, there would be complete withdrawal, vs. being able to tolerate receiving phone calls from certain people, vs. willing & able to place phone calls to certain people, vs. being able to tolerate receiving phone calls from people who are not in the inner circle, vs. being willing to go out and participate in various types of social interaction (i.e. it's one thing to go to Sonic with a trusted friend and eat in the car at the drive-thru, vs. going out with a group for a big meal at Logan's Steakhouse). Anyway, do you have behavioral functioning characteristics categorized in such a way that they end up putting you at a certain percentage of functioning? What it brings to mind for me is the Glascow Coma Scale for assessing level of coma.
Solstice
>
Posted by Dinah on September 16, 2011, at 21:16:07
In reply to 40% down to 25%, posted by SLS on September 7, 2011, at 13:46:01
There was a two week difference between your post saying you were at 40% and your post saying you'd gone down to 25%. Is it possible to segregate permanent change from the natural ups and downs of any illness? If you've felt well for a while on this medication, is it possible that this is a dip rather than a decline?
I'm also wondering if you have felt good on a medication for an extended length of time, or if you only felt like it was really working for the first little while you were on it? Is it possible that it's the shock of a change in brain chemistry that makes you feel good for a while? I think on any medication there's a drift back to setpoint. I definitely find this with Provigil. Now I have to take my morning Provigil to avoid sleeping all day. It doesn't feel like it initially did.
Posted by Dinah on September 16, 2011, at 21:31:34
In reply to Re: 40% down to 25% » SLS, posted by Dinah on September 16, 2011, at 21:16:07
I was musing that it may be that it's less a medication or cocktail you need, but to keep your brain chemicals in a desirable state of flux? A pattern of shifting medications?
I have no idea what I'm talking about here, as my brain craves stability and flux makes me nuts. But I think I remember you describing a pattern of feeling good on medications for only a little while. And since, again if I understand correctly, melancholia rather than agitation and anxiety is the problem it might be healthy for you to seek that state that no matter how pleasant I find it is very risky and unhealthy for me.
Posted by zonked on September 16, 2011, at 22:29:37
In reply to Re: 40% down to 25% » SLS, posted by Dinah on September 16, 2011, at 21:16:07
>Is it possible that it's the shock of a change in brain chemistry that makes you feel good for a while? I think on any medication there's a drift back to setpoint. I definitely find this with Provigil. Now I have to take my morning Provigil to avoid sleeping all day. It doesn't feel like it initially did.
Homeostasis is a bitch. I think an under-researched (or at least under-acknowledged) problem in psychiatry is tolerance/adaptation and how the body seems to try it's DAMNDEST to get people back to their set points.
Posted by SLS on September 17, 2011, at 9:11:37
In reply to Re: 40% down to 25% » SLS, posted by Dinah on September 16, 2011, at 21:16:07
Hi Dinah.
> There was a two week difference between your post saying you were at 40% and your post saying you'd gone down to 25%. Is it possible to segregate permanent change from the natural ups and downs of any illness?
I think I understand what you are saying. Were I to keep a daily mood chart, it is possible that any differences between your two scenarios would be revealed. That I still experience a depression that is considered to be severe (although less severe than in the past) is unacceptable when alternate treatments exist.
> If you've felt well for a while on this medication, is it possible that this is a dip rather than a decline?
It really doesn't matter to me which of the two it is. I rate myself now as being only slightly better than a year ago. Of course, this is better than nothing. If Nardil had not been a MAOI, I could simply add other drugs to it, and have a reduced risk of relapsing. Unfortunately, this is not the case, as the two medications I am to try are serotonin reuptake inhibitors, which if they were to be mixed with Nardil would most certainly provoke serotonin syndrome.
> I'm also wondering if you have felt good on a medication for an extended length of time,
Yes. 100% for 6 months in 1987 on a treatment regime of Parnate and desipramine.
> ...or if you only felt like it was really working for the first little while you were on it?
Yeah, I got that more robust improvement during the first few weeks of Nardil treatment.
> Is it possible that it's the shock of a change in brain chemistry that makes you feel good for a while?
I guess there must be some degree of disruption of homeostasis forced by the drug being used in order to provoke an antidepressant response.
> I think on any medication there's a drift back to setpoint. I definitely find this with Provigil. Now I have to take my morning Provigil to avoid sleeping all day. It doesn't feel like it initially did.
That stinks. Have you already been through the stimulants? I suppose there is a chance that Nuvigil could effectively replace Provigil. Knowing that Risperdal functions as a 5-HT2a receptor antagonist leads me to wonder if using nortriptyline might provide you with similar benefit and with less daytime sedation or sleepiness. Perhaps you don't need any dopamine receptor antagonists at all. Just a thought or two...
Have you ever tried Geodon? It is the most antidepressant-like of the APs. It can be stimulating. Unfortunately, it is a very unpredictable drug that is hard to categorize. You need to start at 40mg per day as a minimum dosage to avoid the emergence of anxiety. If it produces somnolence, profound brain-fog, and cognitive blunting early in treatment, it probably will not be of any use, and you could discontinue it immediately should these things appear and persist for a few days.
I don't see any reason why you would have to discontinue Riserdal to perform any of these trials.
Getting back to me, I can remember where I was and what I was doing when I experienced robust improvements in my depressive condition. This includes periods of time lasting but for a few hours; so profound is the difference in experience. I guess it's like someone who is blind from birth suddenly gaining sight for a few minutes. The experience is unmistakeable as a change in his perception of the universe, and will never be forgotten.
- Scott
Posted by FrustratedMama on September 17, 2011, at 9:51:09
In reply to Re: 40% down to 25% » Dinah, posted by SLS on September 17, 2011, at 9:11:37
Getting back to me, I can remember where I was and what I was doing when I experienced robust improvements in my depressive condition. This includes periods of time lasting but for a few hours; so profound is the difference in experience. I guess it's like someone who is blind from birth suddenly gaining sight for a few minutes. The experience is unmistakeable as a change in his perception of the universe, and will never be forgotten.
I COMPLETELY AGREE SCOTT! I am thinking of you and really hope you see these days again soon and that they outlast the days that aren't so bright.
Posted by SLS on September 17, 2011, at 10:08:52
In reply to Re: 40% down to 25% » SLS, posted by FrustratedMama on September 17, 2011, at 9:51:09
> Getting back to me, I can remember where I was and what I was doing when I experienced robust improvements in my depressive condition. This includes periods of time lasting but for a few hours; so profound is the difference in experience. I guess it's like someone who is blind from birth suddenly gaining sight for a few minutes. The experience is unmistakeable as a change in his perception of the universe, and will never be forgotten.
>
> I COMPLETELY AGREE SCOTT! I am thinking of you and really hope you see these days again soon and that they outlast the days that aren't so bright.That was worth a tear or two. Thank you.
I haven't seen you in a long while. How have you been?
- Scot
Posted by Dinah on September 17, 2011, at 13:12:33
In reply to Re: 40% down to 25% » Dinah, posted by SLS on September 17, 2011, at 9:11:37
For me, my problems generally stem from agitation and anxiety - perhaps some bipolarish tendencies. While Provigil may not cause wakefulness like it used to, it has the huge advantage of not causing anxiety or agitation in me.
Nortryptiline was as very bad for me as Effexor and Wellbutrin. I have concluded that norepinephrine is something that doesn't agree with me.
I'm happy enough with my current mix, although I think I'd like to take a holiday from Provigil and then go back to it. If I ever have the leisure to sleep all day for a few weeks. I'd love for it to work like it used to.
I wonder if those experiences you perceive as normal are something that can realistically be expected for a long period of time, since the longest period you've experienced them is six months. It occurs to me it might be something akin to the mild hypomania I often get with medications. For me, it's not a good thing because my set point has so much anxiety and agitation. I'm better off avoiding it, even if it feels good. But if your set point is the flat melancholic type of depression it might be what makes you feel so good. The problem is, I've never found it possible to maintain that state over time. For me, that's a good thing, for you perhaps not. Is there any way nonmedication way to improve a life with a lower set point? Maybe one of the treatments that provide disruption to the brain, perhaps not ECT but that trms is it? - the one that Twinleaf successfully used?
Posted by Phillipa on September 17, 2011, at 19:36:02
In reply to Re: 40% down to 25% » SLS, posted by Dinah on September 17, 2011, at 13:12:33
The three day blip. Where the meds seem to work well for three days and then switch back. Maybe the "normal" of yesterday isn't the normal of today? But Scott wasn't it the doc that said he wasn't satisfied with your progress? If you were he can't feel how you feel. Just wondering Phillipa
Posted by SLS on September 17, 2011, at 23:02:33
In reply to Re: 40% down to 25%, posted by Phillipa on September 17, 2011, at 19:36:02
> The three day blip. Where the meds seem to work well for three days and then switch back. Maybe the "normal" of yesterday isn't the normal of today? But Scott wasn't it the doc that said he wasn't satisfied with your progress? If you were he can't feel how you feel. Just wondering Phillipa
Yeah. My doctor wanted to jump in several months ago and make treatment changes. He wasn't at all happy with the degree of improvement I was reporting. My silly little optimistic brain decided that if I were to just wait long enough - perhaps another year - I would feel at least 50% better. I think I could return to work at that level of improvement. The 40% blip was nice for a few days. However, as I dropped to 25% and settled back to 35% again, I could not justify leaving my treatment regime unchanged.
It took me 7 days to taper and discontinue Nardil. I experience substantial variations in my depression throughout the day. There were a few hours today when I felt as if I fully relapsed. I'm not doing too bad now, but I expect to deteriorate as time passes and MAO activity recovers. With a little luck, I won't relapse completely by the time Viibryd starts to work.
I can start Viibryd 9 days from now. However, my prescription plan has denied coverage. So the game begins.
- Scott
Posted by floatingbridge on September 17, 2011, at 23:12:13
In reply to Re: 40% down to 25% » Phillipa, posted by SLS on September 17, 2011, at 23:02:33
Not a fun game, the insurance game. Why deny that particular medicine? It is not in generic nor is it prescribed off label, is it?
Posted by SLS on September 17, 2011, at 23:29:58
In reply to Re: 40% down to 25% » SLS, posted by Dinah on September 17, 2011, at 13:12:33
> For me, my problems generally stem from agitation and anxiety - perhaps some bipolarish tendencies. While Provigil may not cause wakefulness like it used to, it has the huge advantage of not causing anxiety or agitation in me.
>
> Nortryptiline was as very bad for me as Effexor and Wellbutrin. I have concluded that norepinephrine is something that doesn't agree with me.That is very possible. Have you ever thought to take guanfacine? It is a NE alpha-2 agonist that suppresses NE, and is often used for ADD. The net effect is to improve function in the prefrontal cortex. This might explain why guanfacine is seen to reduce anxiety and improve attention. The thought just crossed my mind as I read your above post. Now that I have checked Google, I am very happy to report to you that my musings were accurate. Perhaps you can research it further.
> I wonder if those experiences you perceive as normal are something that can realistically be expected for a long period of time,
I don't see why not. Most people spend their whole lives feeling that way.
> since the longest period you've experienced them is six months.
I did more living in a day during those six months than I do in a year while ill.
> It occurs to me it might be something akin to the mild hypomania I often get with medications.
Actually, for me, my infrequent manic reactions to medication launches me into BP I type psychotic mania. I do not spend weeks in hypomania. It is an all-or-nothing severe mania. Thus, the six months I spent in a state devoid of psychotic mania represents a euthymic remission. Compared to severe depression, euthymia is nirvana.
There is a doctor near me who administers rTMS. I will consider paying him a visit if I do not respond to the next two antidepressant trials. Of course, I can't afford the treatments, so I might not have the luxury of choice.
Dinah, I appreciate your devoting some portion of your formidable brain-power pondering my plight.
:-)
- Scott
Posted by SLS on September 17, 2011, at 23:38:19
In reply to Re: 40% down to 25% » SLS, posted by floatingbridge on September 17, 2011, at 23:12:13
> Not a fun game, the insurance game. Why deny that particular medicine? It is not in generic nor is it prescribed off label, is it?
Viibryd is a brand-new antidepressant, and is probably expensive.
My doctor enjoys threatening insurance companies with law suits for their pretentiousness in playing doctor with his patients. I feel as if I am being taken advantage of by the pharmaceutical companies and insurance companies both. Bullies.
- Scott
Posted by floatingbridge on September 18, 2011, at 0:01:08
In reply to Re: 40% down to 25% » floatingbridge, posted by SLS on September 17, 2011, at 23:38:19
Well, I am glad he's going to bat for you.
Posted by Phillipa on September 18, 2011, at 19:40:40
In reply to Re: 40% down to 25% » floatingbridge, posted by SLS on September 17, 2011, at 23:38:19
No more free samples? I'd think they would hand them out like candy. When on cymbalta never bought it the doc supplied me for three months? And since new must have been expensive? Phillipa
Posted by SLS on September 18, 2011, at 19:49:10
In reply to Re: 40% down to 25% » SLS, posted by Phillipa on September 18, 2011, at 19:40:40
> No more free samples? I'd think they would hand them out like candy. When on cymbalta never bought it the doc supplied me for three months? And since new must have been expensive? Phillipa
They are starter packs. I guess I'll need my calculator. :-)
- Scott
Posted by Dinah on September 19, 2011, at 7:59:45
In reply to Re: 40% down to 25% » Dinah, posted by SLS on September 17, 2011, at 23:29:58
> That is very possible. Have you ever thought to take guanfacine? It is a NE alpha-2 agonist that suppresses NE, and is often used for ADD. The net effect is to improve function in the prefrontal cortex. This might explain why guanfacine is seen to reduce anxiety and improve attention. The thought just crossed my mind as I read your above post. Now that I have checked Google, I am very happy to report to you that my musings were accurate. Perhaps you can research it further.
I'll look into that!
> > I wonder if those experiences you perceive as normal are something that can realistically be expected for a long period of time,
>
> I don't see why not. Most people spend their whole lives feeling that way.Life can be grossly unfair. I suppose that I'm thinking in Linehan's dialectical terms of continuing to hope for it while also practicing radical acceptance of the now.
> Actually, for me, my infrequent manic reactions to medication launches me into BP I type psychotic mania. I do not spend weeks in hypomania. It is an all-or-nothing severe mania. Thus, the six months I spent in a state devoid of psychotic mania represents a euthymic remission. Compared to severe depression, euthymia is nirvana.
I had forgotten that, Scott. That's far more serious, and definitely something to avoid. Which medications caused that?
> There is a doctor near me who administers rTMS. I will consider paying him a visit if I do not respond to the next two antidepressant trials. Of course, I can't afford the treatments, so I might not have the luxury of choice.
It's not a covered treatment?
> Dinah, I appreciate your devoting some portion of your formidable brain-power pondering my plight.I would say precisely the same to you. I've always been struck by the breadth of your knowledge in this area. I think I'm speaking from total ignorance, and a sense of curiosity on the topic. My knowledge in medications is limited to my own situation.
Posted by SLS on September 19, 2011, at 12:41:58
In reply to Re: 40% down to 25% » SLS, posted by Dinah on September 19, 2011, at 7:59:45
> > That is very possible. Have you ever thought to take guanfacine? It is a NE alpha-2 agonist that suppresses NE, and is often used for ADD. The net effect is to improve function in the prefrontal cortex. This might explain why guanfacine is seen to reduce anxiety and improve attention. The thought just crossed my mind as I read your above post. Now that I have checked Google, I am very happy to report to you that my musings were accurate. Perhaps you can research it further.
> I'll look into that!
> > > I wonder if those experiences you perceive as normal are something that can realistically be expected for a long period of time,
> > I don't see why not. Most people spend their whole lives feeling that way.
> Life can be grossly unfair.I cry about that sometimes - not that often, though. I accept the unfairness most of the time. It is really an exercise in spirituality for me. In God's perfect creation, someone had to be Scott.
> I suppose that I'm thinking in Linehan's dialectical terms of continuing to hope for it while also practicing radical acceptance of the now.
I wouldn't have known how to describe that. Thanks.
I have been doing this for over 30 years. It has kept me alive when I had surely come to the end. My spiritual and philosophical constitutions give me hope in the face of hopelessness. I have dealt with the fairness issue throughout my illness. I made my peace with God long ago that I should have been chosen to be chained to the bottom of a mirky ocean while others play effortlessly in the sun of the pristine shore above.
> > Actually, for me, my infrequent manic reactions to medication launches me into BP I type psychotic mania. I do not spend weeks in hypomania. It is an all-or-nothing severe mania. Thus, the six months I spent in a state devoid of psychotic mania represents a euthymic remission. Compared to severe depression, euthymia is nirvana.> I had forgotten that, Scott. That's far more serious, and definitely something to avoid. Which medications caused that?
Every episode of mania that I have experienced was associated with either Nardil or Parnate treatment. On one occassion it was actually the discontinuation of Nardil that triggered a psychotic mania.
> > There is a doctor near me who administers rTMS. I will consider paying him a visit if I do not respond to the next two antidepressant trials. Of course, I can't afford the treatments, so I might not have the luxury of choice.
> It's not a covered treatment?
The last time I looked into it, a rTMS facility told me that Medicare was not covering it. Maybe things have changed.
> > Dinah, I appreciate your devoting some portion of your formidable brain-power pondering my plight.
> I would say precisely the same to you. I've always been struck by the breadth of your knowledge in this area. I think I'm speaking from total ignorance, and a sense of curiosity on the topic. My knowledge in medications is limited to my own situation.
Your recent writings on Medication expose a great deal of your intelligence, insight and understanding. I bet that we would both see ourselves as unworthy of such accolades. I know enough to know how much I don't know.
- Scott
Posted by morgan miller on September 19, 2011, at 15:07:32
In reply to Re: 40% » hyperfocus, posted by SLS on August 31, 2011, at 8:01:48
Scott, have you considered trying Methylene Blue? If not, I think you should. A low dose of this stuff is far less potentially harmful than some of the drugs you are currently on. I think it would be ashame for you to not give MB a shot.
Morgan
Posted by morgan miller on September 19, 2011, at 15:12:17
In reply to Re: 40% down to 25% » Phillipa, posted by SLS on September 17, 2011, at 23:02:33
Scott, is Viibryd available online from Canadian or European pharmacies? If so, you could just get it this way right?
I guess you would not want to try even a very very low dose of methylene blue until after being on Viibryd for a while. I do think at some point you should try it. I will be taking it very very soon.
M-
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