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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 22 of 22. This is the beginning of the thread.
Posted by g_g_g_unit on November 18, 2012, at 21:40:02
So kind of at the end-of-my-rope .. barely getting by, financially or emotionally, and tired of treatment, but I'm open to suggestions since I guess I don't have much to lose at this point ..
DX: Severe OCD, inattentive ADD, atypical depression
Tried:
- every SSRI (help physical symptoms of depression, but don't 'brighten' mood; do little for OCD or anxiety/hypervigilance and mess up sleep)
- Zyprexa (increased anxiety)
- Mirtazapine (worsened OCD)
- clomipramine (too stimulating, akathisia)
- nortriptyline (too activating .. was prescribed for sleep)
- Strattera (too anxiogenic)
- Dexedrine (reduces panic, but unreliable .. either makes me sleepy or agitated)
- Ritalin (too agitating)
- Memantine (on now .. too agitating, even at 2.5mg)
- Neurontin (helped sleep and hypervigilance, but caused apathy and brain fog)
- Nardil (couldn't sleep on 90mg, gave up after 12 weeks)
- Parnate (good for depression, but didn't help anxiety and caused agitation)
- clonazepam (taking now .. just 0.25mg .. doesn't do much, though seemed to synergize nicely with Dexedrine when I took the two together ..)
- Xanax (didn't help at dose pdoc prescribed .. I think it was 0.25mg 3x a day)Beta-lactam antiobiotics were suggested by someone on another forum, though I couldn't get my GP to agree ..
Haven't tried: Effexor, Cymbalta, Abilify, Lamictal, Lithium ..
Posted by jono_in_adelaide on November 18, 2012, at 22:06:02
In reply to any suggestions?, posted by g_g_g_unit on November 18, 2012, at 21:40:02
A few suggestions
* Efexor, slowly build upto 300mg daily
* Nardil, slowly build to 90mg/day until you get remission, then reduce for mitainance
* A high dose SSRI (say sertraline 200mg/day) plus reboxetine
*Risperidone 1mg at night added to any of the above
* Xanax 1mg three times a day added to any of the above
Posted by papillon2 on November 18, 2012, at 22:14:53
In reply to Re: any suggestions?, posted by jono_in_adelaide on November 18, 2012, at 22:06:02
I'd go with Effexor XR out of that lot. It is good for depression AND anxiety, though I'm not sure about OCD. You may have to experiment with taking it in the morning or night depending on whether it interferes with your sleep. Oh and I wouldn't cap it at 300mg if that's not enough for you. I took 450mg at one stage. The good thing about Effexor is that most people notice a quick anti-depressant lift when the dose is raised each time, so you'll soon know whether that increased dose is for you. Just don't forget to take it... discontinuation syndrome kicks in very quickly with this one.
Posted by g_g_g_unit on November 18, 2012, at 22:22:52
In reply to Re: any suggestions?, posted by papillon2 on November 18, 2012, at 22:14:53
> I'd go with Effexor XR out of that lot. It is good for depression AND anxiety, though I'm not sure about OCD. You may have to experiment with taking it in the morning or night depending on whether it interferes with your sleep. Oh and I wouldn't cap it at 300mg if that's not enough for you. I took 450mg at one stage. The good thing about Effexor is that most people notice a quick anti-depressant lift when the dose is raised each time, so you'll soon know whether that increased dose is for you. Just don't forget to take it... discontinuation syndrome kicks in very quickly with this one.
Did you find it dulling? Were you able to function socially etc. on it?
Posted by g_g_g_unit on November 18, 2012, at 22:25:53
In reply to Re: any suggestions?, posted by jono_in_adelaide on November 18, 2012, at 22:06:02
Thanks ..
> A few suggestions
>
> * Efexor, slowly build upto 300mg daily
>
> * Nardil, slowly build to 90mg/day until you get remission, then reduce for mitainanceYeah, Nardil was good for depression, but I couldn't sleep and didn't see an anxiolytic effect during the time I was on it (12 weeks) .. in fact, I found it quite activating. Maybe that changes with time?
>
> * A high dose SSRI (say sertraline 200mg/day) plus reboxetineUnfortunately, like I say, SSRIs don't seem to do much for anxiety ..
>
> *Risperidone 1mg at night added to any of the aboveForgot to add that I've tried Risperdone: found it anxiogenic, like Zyprexa.
>
> * Xanax 1mg three times a day added to any of the above
>Does Xanax produce interdose withdrawal symptoms?
Posted by Phillipa on November 18, 2012, at 22:27:37
In reply to Re: any suggestions? » jono_in_adelaide, posted by g_g_g_unit on November 18, 2012, at 22:25:53
Seriously xanax never did for me. I just took I think a total of 4x a day. Have you considered luvox for the OCD? Phillipa
Posted by jono_in_adelaide on November 19, 2012, at 0:01:19
In reply to Re: any suggestions? » jono_in_adelaide, posted by g_g_g_unit on November 18, 2012, at 22:25:53
The half life of Xanax is 11 hours plus, so if you take it every 8 hours, interdose withdrawl symptoms are probably not a concern. If they do concern you, try a longer acting benzo in equipotent doses, say diazepam 10mg three times a day, another alternative is clobazam (Frisium), it produces less sedation than most benzos.
Given your responses above, I'd go high dose Effexor (start off at 75mg, then go to 150, then 225, then 300) combined with Xanax 1mg 3 times a day Valium 10mg three times a day.
It also might be worth trying the SSRI + reboxetine (or bupriopion) - in my case, SSRI's alone seemed inert, but combined with reboxetine they were quite helpfull - and, you're nearing the end of the road, you dont have much to lose by giving it a shot.
Posted by jono_in_adelaide on November 19, 2012, at 0:05:02
In reply to Re: any suggestions?, posted by jono_in_adelaide on November 19, 2012, at 0:01:19
Also, it might be worth getting a referal for treatment at the Black Dog Institute in Sydney - they seem highly motivated and very clued up
Posted by neuroscience on November 19, 2012, at 2:29:01
In reply to Re: any suggestions?, posted by jono_in_adelaide on November 19, 2012, at 0:05:02
how about lyrica for anxiety
Posted by papillon2 on November 19, 2012, at 5:07:42
In reply to Re: any suggestions? » papillon2, posted by g_g_g_unit on November 18, 2012, at 22:22:52
> Did you find [Effexor XR] dulling?
No, not at all. In fact it gave me my spark back, courtesy of treating my depression!
I have found other psych meds dulling, Lithium especially, but not Effexor.
> Were you able to function socially etc. on it?
Yes.
Apart from the discontinuation syndrome, I <3 Effexor. I wish it still worked for me. I can't knock seven years of semi-remission though.
PS: I just remembered that Effexor is also being used in some cases (presumably off-label) to treat ADD.
Posted by Emily Elizabeth on November 19, 2012, at 21:06:24
In reply to any suggestions?, posted by g_g_g_unit on November 18, 2012, at 21:40:02
The ones you haven't tried are all my favorites: lithium, Abilify, and Lamictal. IDK which would be best for you, but I would like to throw out my experience that when you are on a lot of things at once the interactions between them can really change things. I tried Lamictal several years ago on top of 4 other meds and I thought it was useless. Because of other considerations, I recently returned to Lamictal alone and I am doing great on it.
It is a hard journey. I wish you strength and luck.
Best,
EE> So kind of at the end-of-my-rope .. barely getting by, financially or emotionally, and tired of treatment, but I'm open to suggestions since I guess I don't have much to lose at this point ..
>
> DX: Severe OCD, inattentive ADD, atypical depression
>
> Tried:
>
> - every SSRI (help physical symptoms of depression, but don't 'brighten' mood; do little for OCD or anxiety/hypervigilance and mess up sleep)
> - Zyprexa (increased anxiety)
> - Mirtazapine (worsened OCD)
> - clomipramine (too stimulating, akathisia)
> - nortriptyline (too activating .. was prescribed for sleep)
> - Strattera (too anxiogenic)
> - Dexedrine (reduces panic, but unreliable .. either makes me sleepy or agitated)
> - Ritalin (too agitating)
> - Memantine (on now .. too agitating, even at 2.5mg)
> - Neurontin (helped sleep and hypervigilance, but caused apathy and brain fog)
> - Nardil (couldn't sleep on 90mg, gave up after 12 weeks)
> - Parnate (good for depression, but didn't help anxiety and caused agitation)
> - clonazepam (taking now .. just 0.25mg .. doesn't do much, though seemed to synergize nicely with Dexedrine when I took the two together ..)
> - Xanax (didn't help at dose pdoc prescribed .. I think it was 0.25mg 3x a day)
>
> Beta-lactam antiobiotics were suggested by someone on another forum, though I couldn't get my GP to agree ..
>
> Haven't tried: Effexor, Cymbalta, Abilify, Lamictal, Lithium ..
>
Posted by jono_in_adelaide on November 19, 2012, at 21:45:12
In reply to Re: any suggestions?, posted by Emily Elizabeth on November 19, 2012, at 21:06:24
My other suggestion, given that Parnate worked, would be take that for depression, and a benzo (either Xanax or Valium) for the anxiety/agitation.
It might be worth trying Geodon/Zeldox, as this is generaly pretty easy so far as side effects go, it might help with the anxiety, OCD, agaiation etc.
very best of luck
J
Posted by g_g_g_unit on November 20, 2012, at 1:15:15
In reply to Re: any suggestions?, posted by papillon2 on November 19, 2012, at 5:07:42
> > Were you able to function socially etc. on it?
>
> Yes.
>Did you find it had any cognitive side-effects (brain fog, etc.)?
> PS: I just remembered that Effexor is also being used in some cases (presumably off-label) to treat ADD.
Hmm, maybe it would help some hyperactive symptoms, but I'd be skeptical if it did much for inattention?
Posted by g_g_g_unit on November 20, 2012, at 1:18:07
In reply to Re: any suggestions?, posted by jono_in_adelaide on November 19, 2012, at 21:45:12
> My other suggestion, given that Parnate worked, would be take that for depression, and a benzo (either Xanax or Valium) for the anxiety/agitation.
>
> It might be worth trying Geodon/Zeldox, as this is generaly pretty easy so far as side effects go, it might help with the anxiety, OCD, agaiation etc.
>
> very best of luck
>
> J
>Thanks for the suggestions and well-wishes jono. Not sure I'd go straight back to an MAOI, given issues with insomnia etc.
Am curious about Geodon, though, especially given delna's response.
Posted by papillon2 on November 20, 2012, at 4:41:56
In reply to Re: any suggestions? » papillon2, posted by g_g_g_unit on November 20, 2012, at 1:15:15
> Did you find it had any cognitive side-effects (brain fog, etc.)?
No, none at all.
> > PS: I just remembered that Effexor is also being used in some cases (presumably off-label) to treat ADD.
>
> Hmm, maybe it would help some hyperactive symptoms, but I'd be skeptical if it did much for inattention?Yeah, sorry I can't answer help with that. I don't know much about ADD/ADHD nor about the use of Effexor in such cases.
Posted by bleauberry on November 21, 2012, at 5:39:33
In reply to any suggestions?, posted by g_g_g_unit on November 18, 2012, at 21:40:02
Based on the history you presented, everyone will have a different opinion, but mine is that you are not likely to get very far, not much better than you already have, by keeping your world restricted to psych medications. Those are only to help with symptoms, they don't cure anything, and if they are making things worse or problematic, then to me that is a clear sign the problem is something else impacting the brain, but not the brain's fault itself.Whoever was on to the antibiotic thing, I think that was a pretty wise suggestion. And of course a doctor wasn't going to prescribe that, very predictable. Doctors who can help and be creative like that, they exist, but they are under the radar screen and it takes some digging, asking questions, and searching to find them. Stay with an uncreative doctor, stay sick. Simple as that. imo.
Your symptom complex looks like infection to me. I have, unfortunately, been at this game long enough to be able to spot the difference between garden variety depression and infectious depression.
Your overstimulated reactions to many meds.....that was my primary clue. To other people that stuff probably doesn't mean much, just that you have bad reactions to a lot of stuff, but to me I know what it means. Very telling.
I'm not saying it is this or that, just what it looks like.
To keep trying other psych meds, and only that nothing else, will do one thing....confirm over and over that something else is wrong.
Posted by g_g_g_unit on November 22, 2012, at 6:13:44
In reply to Re: any suggestions?, posted by bleauberry on November 21, 2012, at 5:39:33
Yeah, I would have been more than willing to try an antiobiotic .. the GP I saw is an integrative medicine doctor, so I thought she would have been down with it, but instead she wants to charge me $500 for a consultation and testing, all in aid of something called "Biobalance". I think it involves screening for Pylouria (spelling?), methylation etc., though I really can't afford the fee, testing and supplements.
I would have preferred just an antiobiotic challenge, but I think it might be a little controversial since the PANDAS-OCD link is mostly present in children.
How would you suggest going about finding a suitable GP?
> Based on the history you presented, everyone will have a different opinion, but mine is that you are not likely to get very far, not much better than you already have, by keeping your world restricted to psych medications. Those are only to help with symptoms, they don't cure anything, and if they are making things worse or problematic, then to me that is a clear sign the problem is something else impacting the brain, but not the brain's fault itself.Whoever was on to the antibiotic thing, I think that was a pretty wise suggestion. And of course a doctor wasn't going to prescribe that, very predictable. Doctors who can help and be creative like that, they exist, but they are under the radar screen and it takes some digging, asking questions, and searching to find them. Stay with an uncreative doctor, stay sick. Simple as that. imo.
> Your symptom complex looks like infection to me. I have, unfortunately, been at this game long enough to be able to spot the difference between garden variety depression and infectious depression.
> Your overstimulated reactions to many meds.....that was my primary clue. To other people that stuff probably doesn't mean much, just that you have bad reactions to a lot of stuff, but to me I know what it means. Very telling.
> I'm not saying it is this or that, just what it looks like.
> To keep trying other psych meds, and only that nothing else, will do one thing....confirm over and over that something else is wrong.
Posted by bleauberry on November 22, 2012, at 19:59:24
In reply to Re: any suggestions? » bleauberry, posted by g_g_g_unit on November 22, 2012, at 6:13:44
> Yeah, I would have been more than willing to try an antiobiotic .. the GP I saw is an integrative medicine doctor, so I thought she would have been down with it, but instead she wants to charge me $500 for a consultation and testing, all in aid of something called "Biobalance". I think it involves screening for Pylouria (spelling?), methylation etc., though I really can't afford the fee, testing and supplements.
I've spent years dealing with a couple different integrative mds and a naturopath. Honestly I think they were a waste of time. Too expensive, too many tests that did not provide anything meaningful to work with, and the whole while they seem to be looking for bizarre stuff but ignore the obvious. For example, every patient who walks in who has a history of psych symptoms and not-so-good reactions to meds, stealth infection has to be near the top of the list as suspects. But they don't even go there, and if they do, they base their decisions on tests, which are so full or errors they aren't helpful. Basically, it's all a clinical diagnosis....history, symptoms, presentation. Symptoms can be so confusing and nonsensical that these doctors think they are looking for some bizarre thing. it probably isn't that way. The best way to sort things out and make sense of it all is challenge testing, in my experience anyway.
There are herbs you can use for challenge testing if you can't get meds. I used to just order my own meds from overseas pharmacies when I couldn't get a doc to cooperate. It's my health, my life, my body, and no one else is responsible for it but me. So I don't let someone else rule what I can or cannot do in my efforts to be a good steward of my own health.
Finding the right doc hasn't been easy for me. But the effort is worth it. I did lots of google searching, phone calls, asking questions...and somewhere along in the journey some good names come up. But those good names probably will not be found without intentional hunting. In general, the docs most likely to not be helpful are ones affiliated with hospitals....they often operate under hospital rules or guidelines which sort of put handcuffs on creative thinking. For example in my case, the absolute worst docs for me to see, the ones that would definitely keep me sick, are the Infectious Disease Specialists. Despite overwhelming evidence, they do not believe in chronic lyme. So while I have elements of lyme, it's actually the specialists that would do me the most harm by refusing treatment. They would instead send me to a psychiatrist or neurologist, and meanwhile as months go by I get worse and worse and my reactions to psych meds become more and more unreliable and bizarre. My best doc ended up being a family practice MD who happens to have a niche as a lyme expert. Basically, an LLMD flying under the radar screen. He was not easy to find, and in fact I found him by chance accident during my searching. Had I not been searching, never would have found him.
>
> I would have preferred just an antiobiotic challenge, but I think it might be a little controversial since the PANDAS-OCD link is mostly present in children.
>
> How would you suggest going about finding a suitable GP?
>
> > Based on the history you presented, everyone will have a different opinion, but mine is that you are not likely to get very far, not much better than you already have, by keeping your world restricted to psych medications. Those are only to help with symptoms, they don't cure anything, and if they are making things worse or problematic, then to me that is a clear sign the problem is something else impacting the brain, but not the brain's fault itself.Whoever was on to the antibiotic thing, I think that was a pretty wise suggestion. And of course a doctor wasn't going to prescribe that, very predictable. Doctors who can help and be creative like that, they exist, but they are under the radar screen and it takes some digging, asking questions, and searching to find them. Stay with an uncreative doctor, stay sick. Simple as that. imo.
> > Your symptom complex looks like infection to me. I have, unfortunately, been at this game long enough to be able to spot the difference between garden variety depression and infectious depression.
> > Your overstimulated reactions to many meds.....that was my primary clue. To other people that stuff probably doesn't mean much, just that you have bad reactions to a lot of stuff, but to me I know what it means. Very telling.
> > I'm not saying it is this or that, just what it looks like.
> > To keep trying other psych meds, and only that nothing else, will do one thing....confirm over and over that something else is wrong.
>
>
Posted by bleauberry on November 22, 2012, at 20:03:20
In reply to Re: any suggestions? » bleauberry, posted by g_g_g_unit on November 22, 2012, at 6:13:44
I think if you are going to challenge the infection angle, the way to get the best bang for the buck would be to aim not for lyme, but for its coinfection Bartonella. The reason I say that is because if one were to look at the list of most common features of bartonella, you pretty much described it in yourself. It is different than lyme in that it is mostly psychiatric in nature rather than physical. Bartonella tends to overstimulate the nervous system. Depression and anxiety are almost universal in bart or lyme patients. Those types of depression are poorly responsive to meds....so when that happens, it is a strong clue.
Posted by Phillipa on November 22, 2012, at 22:53:18
In reply to Re: any suggestions?, posted by bleauberry on November 22, 2012, at 20:03:20
Friend from CT got the real deal lymes before it was officially called lymes. Had the bullseye rash, posititive spinal fluid for spirochettes, and the arthritis. Today she is doing well. All mine were clear so ruling it out as cured. My Infection control doc firmly believed and still does that lymes the biaxin xl is what stole my smell & taste. No psychiatrist referrals from him or neurologist. He believes in lymes and after the two years of antibiotics still would give me any one I asked for. I declined. Phillipa
Posted by alchemy on November 25, 2012, at 19:15:38
In reply to any suggestions?, posted by g_g_g_unit on November 18, 2012, at 21:40:02
> So kind of at the end-of-my-rope .. barely getting by, financially or emotionally, and tired of treatment, but I'm open to suggestions since I guess I don't have much to lose at this point ..
>
> DX: Severe OCD, inattentive ADD, atypical depression
>
> Tried:
>
> - every SSRI (help physical symptoms of depression, but don't 'brighten' mood; do little for OCD or anxiety/hypervigilance and mess up sleep)
> - Zyprexa (increased anxiety)
> - Mirtazapine (worsened OCD)
> - clomipramine (too stimulating, akathisia)
> - nortriptyline (too activating .. was prescribed for sleep)
> - Strattera (too anxiogenic)
> - Dexedrine (reduces panic, but unreliable .. either makes me sleepy or agitated)
> - Ritalin (too agitating)
> - Memantine (on now .. too agitating, even at 2.5mg)
> - Neurontin (helped sleep and hypervigilance, but caused apathy and brain fog)
> - Nardil (couldn't sleep on 90mg, gave up after 12 weeks)
> - Parnate (good for depression, but didn't help anxiety and caused agitation)
> - clonazepam (taking now .. just 0.25mg .. doesn't do much, though seemed to synergize nicely with Dexedrine when I took the two together ..)
> - Xanax (didn't help at dose pdoc prescribed .. I think it was 0.25mg 3x a day)
>
> Beta-lactam antiobiotics were suggested by someone on another forum, though I couldn't get my GP to agree ..
>
> Haven't tried: Effexor, Cymbalta, Abilify, Lamictal, Lithium ..
>Sorry, I haven't read any of the following posts so this may be irrelevant. Not sure about the OCD. But my first thought is that if Parnate helped, maybe a higher dose of a benzo might help the agitation (and long-acting).
My agitation improved years ago from either lamictal or the xanax xr 2mg i take. Although in the early stages, lamictal made me more agitated (I have heard that that is common) Still looking for help with depression though.
For my short Parnate trial, I could tell after I took a dose that I would get a flux in agitation for a while, so I hear you there.
Posted by neuroscience on November 26, 2012, at 3:37:46
In reply to Re: any suggestions? » g_g_g_unit, posted by alchemy on November 25, 2012, at 19:15:38
> > So kind of at the end-of-my-rope .. barely getting by, financially or emotionally, and tired of treatment, but I'm open to suggestions since I guess I don't have much to lose at this point ..
> >
> > DX: Severe OCD, inattentive ADD, atypical depression
> >
> > Tried:
> >
> > - every SSRI (help physical symptoms of depression, but don't 'brighten' mood; do little for OCD or anxiety/hypervigilance and mess up sleep)
> > - Zyprexa (increased anxiety)
> > - Mirtazapine (worsened OCD)
> > - clomipramine (too stimulating, akathisia)
> > - nortriptyline (too activating .. was prescribed for sleep)
> > - Strattera (too anxiogenic)
> > - Dexedrine (reduces panic, but unreliable .. either makes me sleepy or agitated)
> > - Ritalin (too agitating)
> > - Memantine (on now .. too agitating, even at 2.5mg)
> > - Neurontin (helped sleep and hypervigilance, but caused apathy and brain fog)
> > - Nardil (couldn't sleep on 90mg, gave up after 12 weeks)
> > - Parnate (good for depression, but didn't help anxiety and caused agitation)
> > - clonazepam (taking now .. just 0.25mg .. doesn't do much, though seemed to synergize nicely with Dexedrine when I took the two together ..)
> > - Xanax (didn't help at dose pdoc prescribed .. I think it was 0.25mg 3x a day)
> >
> > Beta-lactam antiobiotics were suggested by someone on another forum, though I couldn't get my GP to agree ..
> >
> > Haven't tried: Effexor, Cymbalta, Abilify, Lamictal, Lithium ..
> >
>
> Sorry, I haven't read any of the following posts so this may be irrelevant. Not sure about the OCD. But my first thought is that if Parnate helped, maybe a higher dose of a benzo might help the agitation (and long-acting).
> My agitation improved years ago from either lamictal or the xanax xr 2mg i take. Although in the early stages, lamictal made me more agitated (I have heard that that is common) Still looking for help with depression though.
> For my short Parnate trial, I could tell after I took a dose that I would get a flux in agitation for a while, so I hear you there.just curious but is xanax xr prescribed that often? it seems like it would be a less addicting form of the normal xanax
This is the end of the thread.
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