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Posted by JahL on June 1, 2005, at 13:42:13
In reply to Re: Opioids. Thanks Ed... » JahL, posted by ed_uk on May 26, 2005, at 14:42:53
> Hi,
>
> Did you see the article? I guess you've seen it before, it's been posted on babble quite a few times- by me and many others.........Hi Ed.
Sorry, been in Jah-land for a week or two. I don't recommend it as a destination.
Yes I saw the article thanks, and no I hadn't seen it before. I stopped doing much research/reading after my ECT experience of two years ago. It wiped my memory banks of most of the information I had accrued over the years. I don't have the motivation to relearn everything :(
Anyway, *very* interesting. At present we (my family & I) are trying to procure a couple of tabs (it's all I need to demonstrate efficacy to my pdoc - then we're in health tribunal territory...) of Vicodin or equivalent from some American friends. Naturally, the initial reaction is one of horror ("they're highly addictive!" etc). However, your article is an excellent, easy to comprehend illustration of why opioids might be appropriate in some exceptional cases (i.e. me). It still won't be easy tho'...
I think it makes for quite compelling reading. It could prove to be very useful. So thanks again.
As for the pdoc appt, we established that Oxycodone is *only* available for post-operative cancer! Not a surprise. It strikes me that our sicko British health establishment regard pain almost as a necessary evil. In America, pain (physiological *and* psychogenic) appears to be regarded as something that can and therefore should be avoided (govt prejudice vs. consumer-led enlightenment I suppose).
I tell ya, I'm ready to go at someone if I don't soon get the treatment that is my birthright. How dare the vindictively ageist (that's anther story...) NICE tell me I can't try a medication that may well save my life? Frustating beyond belief... [rant over]
Thanks for listening,
Jah.
Posted by ed_uk on June 1, 2005, at 17:28:16
In reply to Re: Opioids. Thanks Ed... » ed_uk, posted by JahL on June 1, 2005, at 13:42:13
Hi Jah,
>As for the pdoc appt, we established that Oxycodone is *only* available for post-operative cancer!
That is not correct! OxyContin is licensed in the UK for post-op pain, cancer pain and chronic *non*-malignant pain. The British National Formulary (the BNF, the UK drug bible- which your doctor probably checked) has not yet been updated, despite the fact that OxyContin was licensed for non-malignant pain in 2004 and the BNF comes out every 6 months! I emailed the editor of the BNF a few weeks ago to point out the error!!! They said that they were sorry about the mistake and that they would update it by the next edition!!
Here is the official UK data sheet for OxyContin.......
http://emc.medicines.org.uk/emc/industry/default.asp?page=displaydoc.asp&documentid=2579
My letter to the editor................
To the editors,
I just noticed that the oxycodone monograph in the BNF states........
'Indications: moderate to severe pain in patients with cancer; postoperative pain'
There is no mention of chronic severe non-malignant pain. Since the Summary of Product Characteristics has recently been changed to describe the use of oxycodone in chronic non-malignant pain, I was wondering why the monograph had not been updated. OxyContin is now approved for chronic non-malignant pain.
From the OxyContin SPC, www.medicines.org.uk.................
Therapeutic indications
For the treatment of moderate to severe pain in patients with cancer and post-operative pain.For the treatment of severe pain requiring the use of a strong opioid.
..........................................................................................................................................Use in non-malignant pain:
Opioids are not first line therapy for chronic non-malignant pain, nor are they recommended as the only treatment. Types of chronic pain which have been shown to be alleviated by strong opioids include chronic osteoarthritic pain and intervertebral disc disease. The need for continued treatment in non-malignant pain should be assessed at regular intervals.
......................................................................................................................................................................
Although oxycodone was initially licensed only for the treatment of cancer pain and post-operative pain, this situation appears to have changed. This was reported in the Pharmaceutical Journal in 2004.
From the The Pharmaceutical Journal
Vol 272 No 7301 p667
29 May 2004SPC changes
OxyContin tablets
OxyContin (oxycodone) tablets are now licensed for the relief of severe pain requiring the use of a strong opioid (Napp Pharmaceuticals). The summary of product characteristics states that opioids are not first line therapy for chronic non-malignant pain, and they should be used as part of a comprehensive treatment programme involving other medications and treatments. Types of chronic pain which have been shown to be alleviated by strong opioids include chronic osteoarthritic pain and intervertebral disc disease. The need for continued treatment in non-malignant pain should be assessed at regular intervals. When a patient no longer requires therapy with oxycodone, it may be advisable to taper the dose gradually to prevent symptoms of withdrawal. The tablets should be used with particular care in patients with a history of alcohol and drug abuse. See SPC.Regards,
Edward Sykes.Anyway, it doesn't really matter what type of pain OxyContin is licensed for, it's not licensed for depression! Your doctor has the right to prescribe it for whatever he wants to prescribe it for. The only issue is whether he is *willing* to prescribe it!
Ed.
Posted by JahL on July 10, 2005, at 18:32:20
In reply to Re: Opioids. Thanks Ed... » JahL, posted by ed_uk on June 1, 2005, at 17:28:16
Hi Ed.
Hope this finds you well.
Thanks for your post. It's hard to know quite how to respond; it's all so very frustrating.
I have been banging on about opioids ever since I started Methadone - which heralded for me the potential of full opioid agonists - and became friends with a couple of (now ex-) posters here, who used low dose Vicodin to good effect. That was about 4 or 5 years ago. However, no pdoc, and I've seen a few, has been prepared to indulge me.
My pdoc is adamant not that he won't prescribe it, but that he can't. He tells me that the hospital pharmacy would immediately flag it up and that he would have some serious explaining to do. Aside from anything else, my history of substance *use* (not Heroin, which I always knew I would enjoy too much, just everything else) does me no favours.
I am inclined to believe him because: He is the centre director of the unit and knows the hospital and its policies inside out: He has prescribed me some 30 or so different meds over the years, many of which were of course off-label: He supports my endeavours to procure opioids in so much as he has written to two renowned American pdocs on my behalf (unfortunately both were prejudiced xenophobes): He is a man of real integrity - something almost unheard of amongst psychiatrists IMO.
On the other hand, I agree that somewhere along the line, it is ultimately a question of *will*. The problem is discovering just who has the authority to help me. I have frequently made the point you kinda do; that there is really no good reason not to prescribe, *given my situation*.
In all seriousness, if you (or anyone else for that matter) know of an enlightened pdoc that would be prepared to consider such a treatment for someone who is incredibly treatment resistant, I would give my right arm to obtain an intro. Whatever it takes. £10K contribution to the charity of your choice? Whatever...
I've just got off the phone to The Old Boy, trying to explain that I probably won't be around for much longer. However, I was able to promise that I wouldn't catch the bus until I had tried Mifepristone (very exciting; I asked my pdoc to contact the guys studying this up at Newcastle University. Apparently the results were very promising, prompting further trials) and a full opioid agonist, both of which unfortunately are seemingly impossible to source (so what's a man to do?).
It's a sad indictment of society that I can't procure a handful (that's all I need to test for efficacy. Then, if my hunch is proved to be correct, it goes to a health tribunal) of Oxycodone pills, which might transform me into a happy, productive citizen (as opposed to a wretched ball of anger and hate), but could, if I wanted to (I don't), quite easily score a kilo of Smack with a couple of phone calls.
Anyway, sorry this is so morose and meandering; I don't do Happy and Concise anymore. In fact I have no recollection of what Happy feels like.
It's the deal with me these days; nothing for a few weeks and then along comes a big'un (Scott knows all about that!). I refuse to see a therapist, partly on principle, and so always have a lot to get off my chest. Thanks for listening.
Jamie.
> >As for the pdoc appt, we established that Oxycodone is *only* available for post-operative cancer!
>
> That is not correct! OxyContin is licensed in the UK for post-op pain, cancer pain and chronic *non*-malignant pain. The British National Formulary (the BNF, the UK drug bible- which your doctor probably checked) has not yet been updated, despite the fact that OxyContin was licensed for non-malignant pain in 2004 and the BNF comes out every 6 months! > Anyway, it doesn't really matter what type of pain OxyContin is licensed for, it's not licensed for depression!> Your doctor has the right to prescribe it for whatever he wants to prescribe it for. The only issue is whether he is *willing* to prescribe it!
>
> Ed.
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Posted by JahL on July 10, 2005, at 19:02:06
In reply to Re: Opioids as a treatment of last resort. » ed_uk, posted by JahL on July 10, 2005, at 18:32:20
Hi Bob. It's been a while. Hope you're doing well.
Thanks for keeping this board alive all these years. It has kept me alive for the same period of time.
Just to clear a few things up:
> He is a man of real integrity - something almost unheard of amongst psychiatrists IMO.
Of course, this doesn't refer to you. You're The Guv'nor ;-)
> £10K contribution to the charity of your choice? Whatever...Re-reading that, it looks like a bribe from a drug-seeking doctor shopper (I don't like either of those terms). It's not. I think you know by now I'm not a crank. Crank*y*? I'll give you that.
> I've just got off the phone to The Old Boy, trying to explain that I probably won't be around for much longer. However, I was able to promise that I wouldn't catch the bus until...On a side note, I noticed there was an exodus some time ago to a 'rival' site. I was amazed to discover that discussion of suicide is prohibited there! What?! I appreciate the fact that you don't make suicide into a taboo subject. I'm sure it helps me in some small way to be able to openly discuss this subject here.
> if I wanted to (I don't), quite easily score a kilo of Smack with a couple of phone calls.
That's not a proud boast.
Jamie.
Posted by SLS on July 10, 2005, at 22:32:47
In reply to Re: Opioids as a treatment of last resort. Dr Bob, posted by JahL on July 10, 2005, at 19:02:06
Hi Jamie.
One day at a time, right?
It really sucks.
I know.
I wish things were different.
Anyway...
How would you go about getting mifepristone? Would you need to enter a study?
One thing you might want to look into is metyrapone. Metyrapone is an antiglucocorticoid (anti-cortisol) drug that is currently prescribed in the UK for Cushings Disease and probably a few other hypercortisolemic states. I think it works by inhibiting the synthesis of cortisol via two different metabolic pathways. You can't get it in the US except as a test for cortisol and HPA function. If it doesn't work, perhaps it will give you enough of a partial or transient improvement to warrant further exploration of HPA stuff and further pursue mifepristone. Some studies of metyrapone combined it with ketoconazole.
- Scott
Posted by ed_uk on July 11, 2005, at 14:16:58
In reply to Opioids as a treatment of last resort - Metyrapone » JahL, posted by SLS on July 10, 2005, at 22:32:47
Hi Scott,
Here's the UK data sheet for metyrapone.....
http://emc.medicines.org.uk/emc/industry/default.asp?page=displaydoc.asp&documentid=126
I've never seen a prescription for metyrapone, I've read that it 'may be difficult to obtain'. I'm sure the pharmacy could get hold of it with a bit of effort. Perhaps they'd have to ring 'specials'. If in doubt ring 'specials' LOL, they can usually get hold of unusual stuff. All unlicensed (not approved) products come from 'specials', metyrapone is licensed though so I'm not sure about that. I remember ringing specials last year to order 1 kg of pure wool fat. Nice!
~Ed
Posted by ed_uk on July 11, 2005, at 14:38:55
In reply to Re: Opioids as a treatment of last resort. » ed_uk, posted by JahL on July 10, 2005, at 18:32:20
Hi Jamie,
>My pdoc is adamant not that he won't prescribe it, but that he can't.
I'm pretty sure he *can* prescribe you a sch 2 opioid - if he's willing risk upsetting the pharmacy! Even controlled drugs can be prescribed for 'un-approved' indications in the UK. For example, morphine oral solution is often used to treat severe cough due to lung cancer. When I was working at a local hospital, an elderly woman with advanced Parkinson's disease was prescribed diamorphine (heroin) to relieve her depression. She couldn't swallow, the doctor prescribed a diamorphine infusion.
>He tells me that the hospital pharmacy would immediately flag it up and that he would have some serious explaining to do.
Perhaps. He could give you a prescription to take to a 'community' pharmacy though. That's what I always asked my pdoc to do when I was taking lofepramine + citalopram. The hospital pharmacy made such a fuss and made me wait for ages so that they could find out why I was on two ADs at once. The 'community' pharmacy just dispensed it straight away.
At the moment, I'm working in a pharmacy attached to a GPs surgery. All our methadone patients are 'addicts'. I wouldn't ask your doc for methadone, it's not really used for non-addicts except in terminally ill patients. Morphine, oxycodone or fentanyl could be better alternatives. Oxycodone and fentanyl are licensed for chronic non-maligant pain. Since oxycodone has acquired a reputation for being associated with abuse, your doc might be more comfortable prescribing fentanyl (Durogesic DTrans patch).
I know you've tried codeine. Have you tried dihydrocodeine? It's a schedule 5 opioid like codeine - GPs prescribe tonnes of it. Someone came in with a prescription for 900 dihydrocodeine 30mg tablets last week! Dihydrocodeine also comes as a 12hr controlled release tablet. Tramadol is also used quite a lot, it's not scheduled, have you tried it?
Kind regards
~Ed
Posted by Declan on July 11, 2005, at 16:03:36
In reply to Re: Opioids as a treatment of last resort. » JahL, posted by ed_uk on July 11, 2005, at 14:38:55
I didn't understand clearly from your post whether you were on methadone or had tried it. At any rate I wouldn't recommend it. The effect is so smooth ie the blood levels so even, that all the effect is swallowed up by the tolerance, and most people I know on it are a bit depressed. I think it's toxic.
I've got a soft spot for hydrocodone/dihydrocodeinone (Dicodid here), I remember (it's a long time ago and body chemistry changes) that it had a nice lift to it. Not so strong, but then it's mainly for cough. Oxycodone was a bit fuzzy. OTOH half a Proladone suppository a day (15mg oxycodone) would be OK. Having a variation of codeine in the name, it seems to make the prescription process more doable, I guess. Same with the suppository thing maybe.
Declan
Posted by JahL on July 12, 2005, at 17:13:48
In reply to Re: Opioids as a treatment of last resort. » JahL, posted by ed_uk on July 11, 2005, at 14:38:55
Hi Ed.
> I'm pretty sure he *can* prescribe you a sch 2 opioid - if he's willing risk upsetting the pharmacy!He retires in one month. Perhaps he doesn't want to jeopardise his fat NHS pension? I start afresh with a new pdoc next month and so I suppose we'll see how sympathetic he is to my predicament.
> Even controlled drugs can be prescribed for 'un-approved' indications in the UK. For example, morphine oral solution is often used to treat severe cough due to lung cancer.
Maybe he's worried about how it'd look. I've heard the old 'do no harm' chestnut a couple of times. They see a youngish, ostensibly fit and intelligent guy, but with a history of drug use, and they think 'addiction risk'. The fact that I already take Methadone does not help my cause.
> When I was working at a local hospital...
I wondered if you had some kind of medical background...
> >He tells me that the hospital pharmacy would immediately flag it up and that he would have some serious explaining to do.
>
> Perhaps. He could give you a prescription to take to a 'community' pharmacy though. That's what I always asked my pdoc to do when I was taking lofepramine + citalopram. The hospital pharmacy made such a fuss...Yeah. I've also found hospital pharmacies to be an ordeal. I have a good relationship with my community pharmacist tho'. Perhaps it might be an idea, to start with, to gauge what her reaction would be to such a prescription.
> At the moment, I'm working in a pharmacy attached to a GPs surgery. All our methadone patients are 'addicts'. I wouldn't ask your doc for methadone, it's not really used for non-addicts except in terminally ill patients.
I actually take 'diverted' (and unwanted) Methadone - I have long been aware of the prescribing restrictions and so have never asked for it. However my pdoc is aware I take it, appreciates the difference it makes, and essentially has no problem with it. I only take 5ml daily, which appears to be the optimum dose for me. I originally took it just to see if opioids would help my condition, but it benefitted me almost instantly and I have taken it for around 5 years now w/o any tolerance issues.
> Morphine, oxycodone or fentanyl could be better alternatives. Oxycodone and fentanyl are licensed for chronic non-maligant pain. Since oxycodone has acquired a reputation for being associated with abuse, your doc might be more comfortable prescribing fentanyl (Durogesic DTrans patch).
>
> I know you've tried codeine. Have you tried dihydrocodeine?No. It's got to be worth a go though, in the absence of anything more potent. I'll ask.
> Tramadol is also used quite a lot, it's not scheduled, have you tried it?
Yes, years ago. No benefit - or side effects - at all.
Thanks for your as always invaluable help Ed.
J.
Posted by JahL on July 12, 2005, at 17:43:35
In reply to Re: Opioids as a treatment of last resort., posted by Declan on July 11, 2005, at 16:03:36
> I didn't understand clearly from your post whether you were on methadone or had tried it. At any rate I wouldn't recommend it.
Hi Declan.
I've taken 5ml daily (I have tried a range of doses and that appears to be optimal) for some 5 years now. The benefit is not massive, but it is enough to warrant the dependence I have no doubt aquired by now.
I have a history of exhibiting atypical responses to drugs and so it is with Methadone. It actually infuses me with (a degree of) vitality, to the point where I can lift weights and work out on my beloved punchbag, when I otherwise couldn't.
Essentially though, Methadone has never been anything more than a stop-gap/stepping-stone. Things are just taking longer than anticipated... :-(
> most people I know on it are a bit depressed
I tend to agree. However I believe that a significant proportion of addicts have undiagnosed depressive issues. Injecting heroin is the ultimate form of self-medication. Why would anyone want to become beholden to such a destructive drug if they weren't already in need of the relief it provides? (rhetorical Q)
> I've got a soft spot for hydrocodone/dihydrocodeinone (Dicodid here), I remember (it's a long time ago and body chemistry changes) that it had a nice lift to it.
You have no idea how jealous I am of you. No such fun for us over in good ol' Blighty.
Jamie.
Posted by ed_uk on July 12, 2005, at 18:03:22
In reply to Re: Opioids as a treatment of last resort. » ed_uk, posted by JahL on July 12, 2005, at 17:13:48
Hi Jamie,
>Perhaps he doesn't want to jeopardise his fat NHS pension?
Perhaps :-( I hope your new pdoc is more adventurous.
>I wondered if you had some kind of medical background.....
I'm a pharmacy student.
>No. It's got to be worth a go though, in the absence of anything more potent. I'll ask.
Yes, try dihydrocodeine, it's schedule 5. It comes as 30mg immediate release tablets and a 12 hour controlled release product called DHC Continus.
Kind regards
~Ed
Posted by JahL on July 12, 2005, at 18:28:42
In reply to Opioids as a treatment of last resort - Metyrapone » JahL, posted by SLS on July 10, 2005, at 22:32:47
Hi Scott.
>
> One day at a time, right?
>
> It really sucks.
>
> I know.
>
> I wish things were different.You *know* the script. Different? Maybe one day. Here's hoping for us both.
> How would you go about getting mifepristone? Would you need to enter a study?
Yes, joining a study appears to be the only way of obtaining it legally for affective disorders and quite how one qualifies for these studies, is beyond me. Over the years I have asked numerous pdocs and professors if they could enter me into a given study, but to no avail. The study in Newcastle requires that participants take only Lithium and Valproate - impossible for me.
Otherwise, only abortion clinics may administer it, one course at a time.
However...we've found an online pharmacy - just the one - that purports to sell it. Unfortunately it's very expensive (600mg daily works out at about $1,000+ a week!) and they're currently 'sold out'. (If you want the name of the pharmacy I'll email it to you)
We're now looking to import direct from India - where prices are far more reasonable. The main stumbling block (aside from the illegality of it all, although my life comes before petty laws) is that it's only available in bulk to businesses, making the next step to form a company to accept the meds (the things we have to do to acquire some quality if life...). I'll keep you posted on what happens.
> One thing you might want to look into is metyrapone.
Thanks. That rings a bell. I'll email my pdoc now to see if he will give it some consideration.
> If it doesn't work, perhaps it will give you enough of a partial or transient improvement to warrant further exploration of HPA stuff and further pursue mifepristone.
I was kind of thinking along those lines also. If nothing else, any kind of a response would provide me with considerable ammunition in my quest to get Mifepristone legally prescribed.
It seems that Mifepristone is the most exciting thing out there for two die-hard med-heads like you and I, who have seen it, done it. Can I assume that you too are actively seeking it out (and presumably coming up against the same barriers)?
Even my pdoc, instinctively more of a psychologist, had read an article suggesting that cognitive dysfunction is a predictor of a positive response. I know you, like me, have serious issues with cognition...
Even if it didn't do much for the depression, just imagine being able to think clearly again...
Jamie.
Posted by Dr. Bob on July 12, 2005, at 23:27:11
In reply to Re: Opioids as a treatment of last resort. Dr Bob, posted by JahL on July 10, 2005, at 19:02:06
> Thanks for keeping this board alive all these years. It has kept me alive for the same period of time.
You’re very welcome, I’m glad you haven’t left the party. :-)
Bob
Posted by ed_uk on July 13, 2005, at 15:00:48
In reply to Re: Opioids as a treatment of last resort - Metyrapone » SLS, posted by JahL on July 12, 2005, at 18:28:42
Jamie,
May I ask.......what was your experience with ECT? I think you said you 'forgot who you were' for a while....or something to that effect.
Kind regards
~Ed
Posted by JahL on July 13, 2005, at 16:59:44
In reply to Re: Opioids as a treatment of last resort - Metyrapone » JahL, posted by ed_uk on July 13, 2005, at 15:00:48
> May I ask.......what was your experience with ECT? I think you said you 'forgot who you were' for a while....or something to that effect.
Hi Ed. Thanks for your interest.
To be honest, the deterioration caused by the ECT is responsible for my present suicidal status. I've had suicidal ideation since childhood and so I'm used to it, but post-ECT, it's near overwhelming.
I think there are two factors responsible for the worsening. Firstly, I had an extra long course (14+ treatments), which seems to have knocked my brain out of kilter. I had initially shown some improvement - the reason behind our perseverance - but it was transient and eventually we had to stop chasing that temporary high. I was in pieces.
Secondly, the course disrupted my Lamotrigene regimen because obviously I couldn't take it on the days I received ECT treatment. By the end of the course, my 400mg dose no longer worked properly. I have gone up to 600mg, but have never been able to recapture the same degree of efficacy. Lamotrigene is my lifeline - as it appears to be for many with Bipolar depression (my baby brother included) - and I need it to work just to function.
On this point I have noticed an interesting phenomenon, if you're interested. It seems that Lamotrigene can exhibit 'dose stickiness', whereby if you increase your dose you become stuck on this latter dose since the former no longer works. I originally responded to just 25mg but a succession of pdocs bumped up the dose so that I am now stranded on 600mg.
A good friend on this board (some years ago) went through an almost identical experience to me; after 10 treatments of ECT she was on *800mg* of Lamotrigene (up from 200mg) and like me, was in pieces. I have not heard from her since. A great shame, and a real worry.
The 'forgot who I was' quote basically refers to the intense sense of disorientation I experienced post ECT. I was so bad I lost all contact with the outside world and all sense of purpose. I have improved a little since then - but it would appear that ECT has permanently lowered my baseline depression.
My memory has been badly affected, mostly short-term (names, tasks, conversations etc). Just a week after I finished my course, an authoritative report appeared in The English Journal of Psychiatry (?) which demonstrated that ECT associated memory loss is a far bigger problem than was originally thought.
Perhaps the moral of the story is that ECT is pretty effective for, say, psychotic depression, but much less so for Bipolar depression.
Ed, it strikes introspective ol' me that this is all one way traffic. Obviously you're a *major* attribute to this site, but I'm assuming something other than your ability to help drew you to here in the first instance? Can you tell me what brought you to PB? No probs if you'd rather not elaborate; I'm just curious.
> > I wondered if you had some kind of medical background.....
> I'm a pharmacy student.
Ahhh...we're in safe hands then. :-)
Best,
Jamie.
Sorry, once again longer than intended. Can you tell I have a lot of spare time on my hands? And that I suffer from pathological boredom?
Posted by SLS on July 13, 2005, at 21:24:52
In reply to Re: ECT. » ed_uk, posted by JahL on July 13, 2005, at 16:59:44
Hi Jamie.
If you've answered these questions before, I apologize that I haven't been able to read every post along this thread.
Where was the placement of the electrodes?
Are you left-handed?
- Scott
Posted by JahL on July 13, 2005, at 22:07:35
In reply to Re: ECT. » JahL, posted by SLS on July 13, 2005, at 21:24:52
Hi Scott.
> Where was the placement of the electrodes?
I think bilateral, on each temple. I don't remember too much from that period so I'll have to check. I speak to my pdoc tomorrow and I'll get back to you.
> Are you left-handed?No, right-handed, tho' I throw a mean left hook. ;-)
Haven't you had ECT before? Did it help at all? I think I remember you saying you also had a transient response?
J.
Posted by SLS on July 14, 2005, at 7:13:04
In reply to Re: ECT. » SLS, posted by JahL on July 13, 2005, at 22:07:35
Hi Jamie.
> Haven't you had ECT before? Did it help at all? I think I remember you saying you also had a transient response?
Yes. I experienced an improvement that lasted about 1/2 a day. It occured after the fifth left-unilateral treatment. We crossed over to bilateral placement for the remainder of the 15 treatments. Nothing.
- Scott
Posted by ed_uk on July 14, 2005, at 16:23:02
In reply to Re: ECT. » ed_uk, posted by JahL on July 13, 2005, at 16:59:44
Hi Jamie,
How awful, ECT has been terrible for you. The memory loss sounds devastating.
>Lamotrigene is my lifeline...
Do you have any side effects?
>I originally responded to just 25mg but a succession of pdocs bumped up the dose so that I am now stranded on 600mg.
That's interesting. I never was a fan of 'target doses' eg. 200mg Lamictal. I think people should stay on the dose that works, however low it is. On the other hand, some people need very high doses from the start.
>The English Journal of Psychiatry (?) which demonstrated that ECT associated memory loss is a far bigger problem than was originally thought.
British Journal of Psychiatry? I hate it when doctors underestimate the side effects of the treatments they prescribe. They only fully accept the side effects of treatments that they don't prescribe anymore eg. barbiturate hypnotics.
>Can you tell me what brought you to PB?
Anxiety and obsessive-compulsive disorder brought me to babble. I first visited about 6 years ago, when I started paroxetine for OCD.
Kind regards
~ed
Posted by JahL on July 14, 2005, at 19:37:12
In reply to Re: ECT. » JahL, posted by ed_uk on July 14, 2005, at 16:23:02
> Hi Jamie,
>
> How awful, ECT has been terrible for you. The memory loss sounds devastating.Yeah. My working IQ is around 30 or so points down from my euthymic IQ anyway, and it's a killer. Very demeaning. The memory loss just adds insult to injury. However, I suppose can't really complain; I readily consented to ECT and I essentially knew what I could be letting myself in for. Oh well.
> >Lamotrigene is my lifeline...
>
> Do you have any side effects?Er...maybe a little agitation and patches of psoriasis. Nothing I can't handle.
I missed a dose once and the subsequent one caused a spike in serum levels, precipitating the dreaded rash. I was bright red *all* over. I looked a right state. As you can imagine, I was more than a little worried, but it thankfully cleared up after a few days.
Another time, I developed some sort of immune system reaction, when the lymph glands (?) on my neck swelled to the size of tennis balls (no exaggeration). Again, very disconcerting, but the swelling subsided after a couple of days.
It seems Lamotrigene is a wonderful drug, but one which demands plenty of caution and respect.
> >I originally responded to just 25mg but a succession of pdocs bumped up the dose so that I am now stranded on 600mg.
>
> That's interesting. I never was a fan of 'target doses' eg. 200mg Lamictal. I think people should stay on the dose that works, however low it is.I agree. Surely it's all about optimal dosing. I think the 'one size fits all' approach is just lazy psychiatry.
> >Can you tell me what brought you to PB?
>
> Anxiety and obsessive-compulsive disorder brought me to babble.I'm sorry to hear that. Please don't take this the wrong way, but I've noticed you post rather a lot (amazing really; you produce so many cogent and often pretty sophisticated posts in double quick time - I work at a snail's pace these days). Is there any kind of OCD component to this?
> I first visited about 6 years ago...
Wow. I started lurking around the same time. Were you posting back then? I don't remember the name, although these days I have trouble remembering my own...
Best,
Jamie.
Posted by JahL on July 14, 2005, at 19:44:02
In reply to Re: ECT. » JahL, posted by SLS on July 14, 2005, at 7:13:04
Hi Scott.
> > Haven't you had ECT before? Did it help at all? I think I remember you saying you also had a transient response?
>
> Yes. I experienced an improvement that lasted about 1/2 a day. It occured after the fifth left-unilateral treatment. We crossed over to bilateral placement for the remainder of the 15 treatments. Nothing.:-(
A question: I've never heard you contemplate opioids, and I'm pretty sure you've never tried any (?). Is there a reason for this? Are you concerned about addiction/tolerance issues or is it just that you think opioids aren't the answer? I'm just curious.
Thanks,
J.
Posted by SLS on July 14, 2005, at 21:37:12
In reply to Re: ECT. » SLS, posted by JahL on July 14, 2005, at 19:44:02
Hi Jamie.
> A question: I've never heard you contemplate opioids, and I'm pretty sure you've never tried any (?).No, I really haven't.
> Is there a reason for this? Are you concerned about addiction/tolerance issues or is it just that you think opioids aren't the answer? I'm just curious.
I guess I never thought it would be a stable treatment. I have tried taking Vicadin on two occasions, but only a single dose. It didn't affect me one way or the other. I never broached the subject with my doctor, although one time he brought up Ultram. I think I'll ask him about it. Do you think buprenorphine would be the first best choice or would it be oxycodone, or perhaps some other drug?
- Scott
Posted by JahL on July 14, 2005, at 23:09:05
In reply to Re: ECT., posted by SLS on July 14, 2005, at 21:37:12
Hi there Scott.
> > Are you concerned about addiction/tolerance issues or is it just that you think opioids aren't the answer? I'm just curious.
> I guess I never thought it would be a stable treatment.I originally had similar concerns but I am now at the stage where I will take relief in whatever form it comes. I suppose I am a (fairly controlled) hedonist by nature (I'm a professional gambler for example) and I would rather be high than low. That's obviously a very personal choice though.
> I have tried taking Vicodin on two occasions, but only a single dose. It didn't affect me one way or the other.
Wow. I thought *everyone* got high on Vicodin. Certainly most of Hollywood does. ;-)
Can I ask how you got hold of this gold-dust?
> I never broached the subject with my doctor, although one time he brought up Ultram. I think I'll ask him about it.
It's so benign in my experience that there's really nothing to lose (IMO), if there's nothing else on the table. Also, you tend to know almost right away if an opioid holds any benefits for you, so no messy 6 week trials.
> Do you think buprenorphine would be the first best choice?
Do you remember Elizabeth? She told me that she had enjoyed considerable success with Bupe. As I remember, it did little for me personally, but was perfectly tolerable. It's a partial agonist and has relatively low abuse potential. As the most innocuous of the bunch (along with Ultram), it might be the one to start with. But what do I know?
I started with Naltrexone - an opioid antagonist - and it lived up to its name (i.e. pure dysphoria, the complete opposite of an agonist effect).
> or would it be oxycodone, or perhaps some other drug?
As Ed says elsewhere, it's the one perhaps most associated with abuse ("Hill-billy Heroin") and so is likely to ring alarm bells with your pdoc. I view it as one of the last you'd try, but if you've tried all the others.....
With opioids it's maybe a case of just how much you are prepared to risk (if indeed there is any risk - it's not absolutely inevitable, I think) in the pursuit of some, any, quality of life.
What does it for me though, is that I know of as many as 10 posters here (past and present) who have had good success with *low dose* opioid treatment. Tolerance doesn't seem to be a massive issue - one girl I knew told me the dose doubled every couple of years - pretty encouraging really. It's perhaps also important to bear in mind that opioids would probably only be a stop gap measure - albeit potentially a very effective (and maybe pleasurable :-P ) one. There's some exciting drugs due over the next few years but I really can't wait; I don't want to hit my 30th feeling like this.
I sound like an Opiate salesman. ;-)
Dog walk, spliff, bed. It's 5:00am here and I'm still buzzing off a weights session I completed an hour ago. Endorphins are nice. Wish me luck for the £55M lottery in Friday night, I could do with a bit of loose change. Nite.
Jamie.
Posted by SLS on July 15, 2005, at 8:08:05
In reply to Re:opioids » SLS, posted by JahL on July 14, 2005, at 23:09:05
What are you taking right now?
- Scott
Posted by ed_uk on July 15, 2005, at 14:58:41
In reply to Re: ECT. » ed_uk, posted by JahL on July 14, 2005, at 19:37:12
Hi Jamie,
>Please don't take this the wrong way, but I've noticed you post rather a lot (amazing really; you produce so many cogent and often pretty sophisticated posts in double quick time - I work at a snail's pace these days). Is there any kind of OCD component to this?
LOL yes, I do post a lot! It's not OCD, I enjoy posting..........I'm 'addicted' to babble.
>Wow. I started lurking around the same time. Were you posting back then?
No. I didn't start posting until about a year ago. I often used to come on babble but I never posted.
Kind regards
~Ed
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