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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 17 of 17. This is the beginning of the thread.
Posted by Amelia_in_StPaul on April 11, 2009, at 18:35:18
Hi all,
I am new to this board. I live in Minnesota (St Paul); my psychiatric care has been spotty at best. Let me back up a little...Since the age of 17, I have had a diagnosis of major depression; PTSD was added to that a few years later. Then features of borderline personality disorder was added to that around the same time. Flash forward to my late 30s...I was in a master's program for psychology and everything changed. I started to become obsessed that I was becoming schizophrenic, like my sibling. Then I was diagnosed with OCD. A year and half after that diagnosis, my OCD rages on, as does PTSD, BPD, and depression.
I had always had atypical depression and fluoxetine worked for that. I didn't have a lot of anxiety. When I was diagnosed with OCD, I had been off my fluoxetine for a year (prior, since age 20, I'd been on and off it, mostly on). I was barely functioning because of depression and, most of all, anxiety.
I was in the uni's hospital and was treated very, very poorly. It reactivated my PTSD. Then I went into another hospital's partial program, which was great. However, because I still thought I was becoming schizophrenic, I established a relationship with a specialist in psychosis at the U. I didn't want to continue seeing him because he only admits to the uni hospital, where I had such a terrible experience I was shaking when I left.
However, he has been reassuring and I like that aspect. He is in general a very, very nice man and very smart. But I feel that, treatment-wise, this isn't working.
I have been back on fluoxetine since August 2008. I am on 20 mg; it took me since April 2008 to tolerate that much. And the only way I could tolerate it at all was because I was put on ativan at the same time (.5 morning; 1.5 evening). Otherwise, I had felt, not euphoric but a little high, a little spacey and light. I had not felt that way before. It was so bad, that before April I had tried with a nurse practitioner to go back on fluoxetine twice, only to quit because of how it made me feel.
In fact, everything I tried during my year off Prozac didn't work--I became extremely anxious and irritated on Wellbutrin, while Zoloft made me sleepy and wired at the same time.
These are the problems: 1) the treatment for OCD is a higher dose of SSRI (I've never been higher than 20mg of fluoxetine); fluoxetine was all I could ever tolerate, yet I am an intermediate metabolizer of cytochrome P540 2D6. I have tried many SSRIs and SNRIs over the years. 2) I want to get off ativan (it's been a year now!) but as a test I missed my morning .5 dose and felt the same old kinda high feeling I've felt before. 3) I used to take 25 mg of Trazodone to sleep. I'm back on that, too, and it was working, but lately I have a lot of wakings through the night. My psychiatrist thought the best thing to do was to increase the dose, but what happened is what usually does: I sleep more soundly, but am dead tired for 3 hours after waking. Since this regiment means I am in bed for 12 hours (mostly sleeping), I am really in bed or sleepy for 15 hours.
Compounded to the problem is that my psychiatrist doesn't think I have OCD. He thinks my obsessions are a part of PTSD (but the DSM does not list obsessions as a feature of PTSD, at all). My therapist, meanwhile, treats the OCD (she's a specialist), but won't touch the trauma, for whatever reason. They both seem to have blinders on; they seem to be equipped to see in me what they specialize in (my psychiatrist has special experience w/PTSD as well as psychosis) and nothing else. Maybe that's being harsh.
I do admit that I am also afraid to try new things. In that awful hospital, I was "persuaded" to take a small dose of Seroquel, and it sent me into a panic attack because all the sudden I was--not hallucinating, but things appeared larger than they were, and I felt like I was on acid. Also, early and fatal heart disease is rampant in my family.
Does anyone have any idea what I should do??? I think I need a new psychiatrist, but do not know where to turn anymore. Everything is raging--OCD and depression and PTSD and BPD. I reduced my Trazodone back to 25 mg, and I wake up utterly exhausted and feel utterly exhausted throughout the day. I've nearly fallen asleep driving!
Any thoughts? I am at my wit's end. I contemplate suicide nearly daily. I don't know where to turn.
Thanks,
Amelia
Posted by Amelia_in_StPaul on April 11, 2009, at 18:39:41
In reply to Meds aren't working; doc is frustrating, posted by Amelia_in_StPaul on April 11, 2009, at 18:35:18
My psychiatrist does not want to tinker with my meds. He'll increase Trazodone and fluoxetine, but that's it. He agrees I should go off ativan, but has no back up plan for the anxiety (I do not think the fluoxetine will take care of it--the ativan barely works anymore).
Posted by Phillipa on April 12, 2009, at 0:37:25
In reply to Forgot to add..., posted by Amelia_in_StPaul on April 11, 2009, at 18:39:41
Amelia welcome to babble. Sounds like a really rough time. I don't feel this is the time to go off a benzo maybe switch to another one and did you ever try luvox? For OCD and depression in Europe now here in time release but the old generic still available I take low doses of it. It's the most sedating of SSRI's sounds like you react like me with anxiety. Love Phillipa
Posted by bleauberry on April 12, 2009, at 8:44:00
In reply to Meds aren't working; doc is frustrating, posted by Amelia_in_StPaul on April 11, 2009, at 18:35:18
This is a tough situation, but sadly, a common one. There is however always strong hope and plenty of options. These options immediately came to mind:
1. Switch to brand Prozac. I assume you are probably on generic. This is no joke. There is often a huge difference between the two, even though they are supposedly the same (long story, take my word for it). My doctor sees such a big difference between brand Lilly Prozac and generics that he never prescribes the generic version any more. We've seen this phenomenon here at pbabble for years by countless people with a number of different meds. It doesn't mean that all generics are bad or that generics won't work, because they work just fine for some people. It means that there is enough of a difference with enough people that it has to be considered as an easy and potentially effective strategy to do before adding another med or switching meds.
2. Add Abilify to the prozac, beginning at 1mg per day. Go slow. Common final doses in clinical trials range from 2.5mg to 15mg, though some people take 20mg to 30mg. Since you are so sensitive, as am I, start very low, go very slow, and find your magic window in an unhurried manner.
3. This would be hard since it would involve weaning off Prozac and being without any meds for an entire month. But, after that month, start either Parnate or Nardil. Since they were invented 50 years ago, there are still none that beat their performance when so many other meds have already been tried. Other doctors who commonly use Nardil or Parnate (those doctors are few) would have already had you on one of them by now. You've had enough failures and trials to justify it. Though they have a reputation of more side effects and dangerous food interactions, many people find the side effects easier than SSRIs, and the food interactions are dramatically overblown. In recent years studies have been done to re-evaluate the foods-to-avoid list and it is actually quite a short list, mostly things you probably never even eat anyway. When the reuptake inhibition drugs produce problems or limited results, the MAOIs (Nardil, Parnate) often prove to be powerful weapons in the psychiatric arsenal. For any doctor hesitant to try one, just remind them they were part of the large STAR*D study, and that you are enough far along in the treatment protocol to have arrived at the place where the MAOIs are tried.
Posted by Amelia_in_StPaul on April 12, 2009, at 11:37:57
In reply to Re: Forgot to add... » Amelia_in_StPaul, posted by Phillipa on April 12, 2009, at 0:37:25
Hi Phillipa thank you for the welcome. I haven't tried Luvox, but am willing to. I just can't get my doctor to try anything but the old route. I think I need a new doctor. I will look into the time release of Luvox--does that help with sedation? Or do you take it at night? Do you know if Luvox interferes with sleep architecture? Thank you kindly for your response, and again,f or the welcome. Amelia
> Amelia welcome to babble. Sounds like a really rough time. I don't feel this is the time to go off a benzo maybe switch to another one and did you ever try luvox? For OCD and depression in Europe now here in time release but the old generic still available I take low doses of it. It's the most sedating of SSRI's sounds like you react like me with anxiety. Love Phillipa
Posted by Amelia_in_StPaul on April 12, 2009, at 11:54:09
In reply to Re: Meds aren't working; doc is frustrating » Amelia_in_StPaul, posted by bleauberry on April 12, 2009, at 8:44:00
bleauberry, thank you. I'm at my wit's end, truly, and welcome all thoughts. I appreciate the time you took to think this one through. Since my doctor is so stubborn about staying on this regiment, I think I will ask to have the brand Prozac and not the generic. I remember that I was first on Prozac when there was no generic, and it felt differently than it did subsequently.
May I ask what the Abilify would be for? I think to activate the Prozac, right? I think though that both Abilify and Prozac use the cytochrome P540 2D6, as does Trazodone, a little. So would that be too hard on my body? Side effects too harsh?
Do people tend not to be sleepy on Nardil and Parnate?
And one final question: do you know anything about bipolar II. I'm starting to question whether that's the problem. Usually my mood swings are tied to my sleeping and fatigue (too much fatigue = depression; waking up = happiness) but I do match some of the "soft bipolar" signs. On the other hand, I do truly have BPD (emptiness; fear of abandonment), and according to some, that rules out bipolar II.
Thanks in advance for any additional thoughts. And thanks so much for your thoughtfulness about my situation.
> This is a tough situation, but sadly, a common one. There is however always strong hope and plenty of options. These options immediately came to mind:
>
> 1. Switch to brand Prozac. I assume you are probably on generic. This is no joke. There is often a huge difference between the two, even though they are supposedly the same (long story, take my word for it). My doctor sees such a big difference between brand Lilly Prozac and generics that he never prescribes the generic version any more. We've seen this phenomenon here at pbabble for years by countless people with a number of different meds. It doesn't mean that all generics are bad or that generics won't work, because they work just fine for some people. It means that there is enough of a difference with enough people that it has to be considered as an easy and potentially effective strategy to do before adding another med or switching meds.
>
> 2. Add Abilify to the prozac, beginning at 1mg per day. Go slow. Common final doses in clinical trials range from 2.5mg to 15mg, though some people take 20mg to 30mg. Since you are so sensitive, as am I, start very low, go very slow, and find your magic window in an unhurried manner.
>
> 3. This would be hard since it would involve weaning off Prozac and being without any meds for an entire month. But, after that month, start either Parnate or Nardil. Since they were invented 50 years ago, there are still none that beat their performance when so many other meds have already been tried. Other doctors who commonly use Nardil or Parnate (those doctors are few) would have already had you on one of them by now. You've had enough failures and trials to justify it. Though they have a reputation of more side effects and dangerous food interactions, many people find the side effects easier than SSRIs, and the food interactions are dramatically overblown. In recent years studies have been done to re-evaluate the foods-to-avoid list and it is actually quite a short list, mostly things you probably never even eat anyway. When the reuptake inhibition drugs produce problems or limited results, the MAOIs (Nardil, Parnate) often prove to be powerful weapons in the psychiatric arsenal. For any doctor hesitant to try one, just remind them they were part of the large STAR*D study, and that you are enough far along in the treatment protocol to have arrived at the place where the MAOIs are tried.
Posted by Zana on April 12, 2009, at 13:23:48
In reply to Re: Meds aren't working; doc is frustrating, posted by Amelia_in_StPaul on April 12, 2009, at 11:54:09
Welcome Amelia. Sounds like you need a med consult at the very least. And maybe a new pdoc. I was seeing a woman for 15 years who just dropped me because she was frustrated that I was not getting better. Its not a good situation to be in. Your current doc might even be able to recommend someone, a second pair of eyes, to look over your history and think about where to go next.
It also sounds like are carrying a heavy burden of multiple diagnosises which just sound confusing and unhelpful to me. I mean that it sounds like a confusing and unhelpful way to think about yourself. On the other hand I hear that you really want someone to understand what is going on with you and to help you! Doesn't sound like the hospital is helpful- unless you are afraid of hurting yourself. Does the university have a medical school with a psychiatry department? Maybe that's where your doc is now but it might be a good place to look around for someone who really knows meds- a good psychopharm doc.
Let us know how things are going. Stay in touch. People here are great and really understand what it's like to feel as badly as you do. It helps to stay connected.
Zana
Posted by Amelia_in_StPaul on April 12, 2009, at 13:37:53
In reply to Re: Meds aren't working; doc is frustrating, posted by Zana on April 12, 2009, at 13:23:48
Hello Zana,
Thank you for your welcome and very empathetic reply. My pdoc is in the psychiatry dept there--can I ask what a psychopharm doc is? Is it a psychiatrist with more research experience or a special emphasis on pharmacology?
I think the worst part is how tired I've suddenly become. I'm back to sleeping through the night, but it's 12 hours and I'm still tired throughout the day. I'm back to sleeping through, I think, b/c I cut out caffeine. But without caffeine, I'm a zombie. Sigh.
Anyway, thanks so much.
Amelia
> Welcome Amelia. Sounds like you need a med consult at the very least. And maybe a new pdoc. I was seeing a woman for 15 years who just dropped me because she was frustrated that I was not getting better. Its not a good situation to be in. Your current doc might even be able to recommend someone, a second pair of eyes, to look over your history and think about where to go next.
> It also sounds like are carrying a heavy burden of multiple diagnosises which just sound confusing and unhelpful to me. I mean that it sounds like a confusing and unhelpful way to think about yourself. On the other hand I hear that you really want someone to understand what is going on with you and to help you! Doesn't sound like the hospital is helpful- unless you are afraid of hurting yourself. Does the university have a medical school with a psychiatry department? Maybe that's where your doc is now but it might be a good place to look around for someone who really knows meds- a good psychopharm doc.
> Let us know how things are going. Stay in touch. People here are great and really understand what it's like to feel as badly as you do. It helps to stay connected.
> Zana
Posted by Zana on April 12, 2009, at 14:11:05
In reply to Re: Meds aren't working; doc is frustrating ) Zana, posted by Amelia_in_StPaul on April 12, 2009, at 13:37:53
Maybe you need the caffeine. How about a light box in the bedroom. Would they cause too much anxiety?
A psychopharmacologist is a psychiatrist who specializes in prescribing psychiatric medications. With your history, you should definitely have a specialist. And I'm sure their are dpocs in the university psychiatry department. Call the adult out-patient unit and ask. I think it could be a big help.
Zana
Posted by Amelia_in_StPaul on April 12, 2009, at 14:15:59
In reply to Re: Meds aren't working; doc is frustrating ) Zana, posted by Zana on April 12, 2009, at 14:11:05
I think I do need caffeine. But even if taken before noon, it takes me til midnight at least to sleep, and I have physical therapy appts at 11:30. I don't know if this is familiar to you or anyone, if it's because of meds, but if I sleep less than 10 hours my mood is hugely affected.
I did try a light box but it was too stimulating. Not so much in terms of palpable anxiety, but in terms of feeling spacey and a little high, not euphoric, but maybe jittery?
I'm a difficult patient! I will call and ask if there is a dpdoc. Thank you!!
> Maybe you need the caffeine. How about a light box in the bedroom. Would they cause too much anxiety?
> A psychopharmacologist is a psychiatrist who specializes in prescribing psychiatric medications. With your history, you should definitely have a specialist. And I'm sure their are dpocs in the university psychiatry department. Call the adult out-patient unit and ask. I think it could be a big help.
> Zana
Posted by Zana on April 12, 2009, at 15:05:39
In reply to Re: Meds aren't working; doc is frustrating ) Zana, posted by Amelia_in_StPaul on April 12, 2009, at 14:15:59
I'm a difficult patient too but it's not because I am trying to be difficult. I'm sure you are not trying to be difficult. It's just that it is difficult to find help. You have to just keep plugging and experimenting. I'll be curious to hear what you find out about the psychpharm docs.
Zana
Posted by desolationrower on April 14, 2009, at 16:13:40
In reply to Re: Meds aren't working; doc is frustrating ) Zana, posted by Zana on April 12, 2009, at 15:05:39
needing 10h sleep sounds like your sleep quality is poor
-d/r
Posted by Phillipa on April 14, 2009, at 21:30:03
In reply to Re: Meds aren't working; doc is frustrating ) Zana, posted by desolationrower on April 14, 2009, at 16:13:40
d/r why I have also since a teen. Love Phillipa
Posted by Amelia_in_StPaul on April 15, 2009, at 10:27:42
In reply to Re: Meds aren't working; doc is frustrating ) Zana, posted by desolationrower on April 14, 2009, at 16:13:40
I've always needed 10 hours. The problem is needing 12 hours and then waking up exhausted anyway. And then falling asleep driving when I hit bottom at 3:00 PM.
I wonder if I read somewhere that SSRIs can increase the activity of benzos. I wonder if it especially doesn't help that I am an intermediate metabolizer of Prozac, rather than a normal one. It's been 9 months since I've been at these levels. I wonder if I need a med break?
> needing 10h sleep sounds like your sleep quality is poor
>
> -d/r
Posted by desolationrower on April 15, 2009, at 13:20:24
In reply to Sleep and build up of meds?, posted by Amelia_in_StPaul on April 15, 2009, at 10:27:42
i think you should consider a sleep test. at least, something to improve sleep quality, 5ht2 antagonist, alpha2delta,
Posted by Amelia_in_StPaul on April 19, 2009, at 20:45:32
In reply to Re: Sleep and build up of meds?, posted by desolationrower on April 15, 2009, at 13:20:24
d/r, hello! I didn't see your message. Can you tell me what you mean by alpha2delta? I googled it and didn't find a supplement. Also, what 5ht2 antagonist would I find (med or supplement) and how is that different from fluoxetine and Trazodone? Many thanks. Amelia.
> i think you should consider a sleep test. at least, something to improve sleep quality, 5ht2 antagonist, alpha2delta,
Posted by desolationrower on April 24, 2009, at 2:52:41
In reply to Re: Sleep and build up of meds?, posted by Amelia_in_StPaul on April 19, 2009, at 20:45:32
> d/r, hello! I didn't see your message. Can you tell me what you mean by alpha2delta? I googled it and didn't find a supplement. Also, what 5ht2 antagonist would I find (med or supplement) and how is that different from fluoxetine and Trazodone? Many thanks. Amelia.
>hey. i miss messages all the time, although for me its i read them then forget to respond.
alpha2delta is an ion channel, practically it means gapapentin/pregabalin. no sups i nkow of.
fluoxetine is a 5ht2c antaonists (some 2a too i think), traz is 2a antagonist and weak 2c agonist via a metabolite. hm, can't think of any supps, but lots of drugs do this, i think cyproheptadine is the best option
-d/r
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