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Posted by Phillipa on June 1, 2007, at 20:34:59
In reply to To Phillipa, posted by deniseuk190466 on June 1, 2007, at 15:39:30
Denise yes that is the site. And no ECT for me. Love Phillipa
Posted by rvanson on June 2, 2007, at 1:41:42
In reply to Re: What have I got to lose by having ECT, posted by deniseuk190466 on June 1, 2007, at 16:11:57
> Thanks for your response, the psychiatrist who I am seeing is not recommending it, in fact she is against it but I just keep thinking what have I got to lose
>
> I'm not putting all my eggs in one basket, I've tried lots of medication and I am seeing a Cognitive behavioural therapist because I know I should try anything but to be honest I'm not sure where the therapy is going or how it is going to help. I've had my third session and so far I've not had any great insights. I do know what my strengths and weaknesses are already and don't need them pointing out to me.
>
> Part of me just wants to try every possible tool, treatment to beat this thing and ECT is one of them. But then maybe I would have it and rue the day. I really don't know. I also thought if I have Unilateral ECT then at least the memory risks aren't as great.
>
> Anyway, thanks for responding.I agree with you about CBT and general therapy pretty much being a waste of time, but it helps lots of people and it wont affect your memory like ECT.
BTW, have you tried any of the non-FDA approved European/Australian/Canadian medications like Solian or Mannerix/Aurorix, yet?
Both these medications affect dopamine levels or response, to one extent or another and that seems to be a part of the puzzle when dealing with adhedonic (non-sadness, no real joy or pleasure) depression, as I think that you are burdened with.
These have been of considerable benefit to me when all else fails (which, with the standard typical non-dopamine reactive SSRI type med's in the USA, is too often) if I can find a decent source to obtain them from, that is.
Posted by Deniseuk190466 on June 2, 2007, at 16:31:38
In reply to Re: What have I got to lose by having ECT, posted by rvanson on June 2, 2007, at 1:41:42
Rvanson,
Thanks for the suggestions.
I've heard that mannerix is an MAOI and that it has very weak antidepressant effects. I've already tried Nardil (supposed to be stronger) and it didn't work and I'm loathe to do another switch from lexapro to another MAOI.
As to Solian, istn't that Amilsupride? I do take Zyprexa now and again (another anti-psychotic) wouldn't Amilsupride have the same affect as Zyprexa?
Denise
Posted by Tomatheus2 on June 2, 2007, at 23:01:22
In reply to Re: What have I got to lose by having ECT » deniseuk190466, posted by Honore on June 1, 2007, at 18:02:43
> It's not just your memory that you have to lose.
I tend to agree, even though I've never had ECT myself.
In 2001, Mind (a mental health charity in England and Wales) conducted a survey of 418 individuals who had received ECT, one third of whom found the procedure to be helpful. A wide range of side effects were reported.
Short-term side effects (in order of frequency):
* headaches
* drowsiness
* confusion
* loss of past memories
* dizziness
* disorientation in time or space
* difficulty concentrating
* inability to remember new information
* suicidal tendencies after the treatment
* apathy
* inability to recognise people
* loss of reasoning ability
* fear and anxiety
* feelings of helplessness
* sense of betrayal
* visual problems
* loss of previous skills (reading, music, languages)
* sleep problems
* feelings of worthlessness
* neck or back pain
* loss of creativity
* epileptic seizures
* sexual difficulties.Permanent side effects (also in order of frequency):
* loss of past memories
* difficulty concentrating
* fear or anxiety
* inability to remember new information
* feelings of worthlessness
* feelings of helplessness
* sense of betrayal
* loss of previous skills
* loss of creativity
* suicidal tendencies after the treatment
* loss of reasoning ability
* sleep problems
* confusion
* apathy
* headaches
* inability to recognise people
* disorientation in time and space
* personality changes
* neck or back pain
* visual problems
* sexual difficulties
* drowsiness
* muscle ache
* dizziness
* nausea
* epilepsyConsidering that I've been experiencing memory and concentration difficulties for some time, I don't think that I would ever choose to receive an ECT treatment myself. However, some individuals (approximately one third, according to Mind) do report benefiting from ECT, so I think it should remain available as a treatment option.
Tomatheus
Source: http://www.mind.org.uk/Information/Booklets/Making+sense/ECT.htm
Posted by rvanson on June 3, 2007, at 1:03:51
In reply to Re: What have I got to lose by having ECT, posted by Deniseuk190466 on June 2, 2007, at 16:31:38
> Rvanson,
>
> Thanks for the suggestions.
>
> I've heard that mannerix is an MAOI and that it has very weak antidepressant effects. I've already tried Nardil (supposed to be stronger) and it didn't work and I'm loathe to do another switch from lexapro to another MAOI.
>
> As to Solian, istn't that Amilsupride? I do take Zyprexa now and again (another anti-psychotic) wouldn't Amilsupride have the same affect as Zyprexa?
You are correct that Solian and Amisulprid(e) are the identical medicine/chemical. In lower doses, Solian can help boost or aid the effects of anti-depressants and the adhedonia conditions.In the higher dose range it acts as an anti-psychotic medication much like Zyprexa and brings on drowsiness for me and others.
I have tried Zyprexa in the past and found it much too sedating to tolerate, even at the lowest dose ranges.
As for Mannerix (Moclobemide) it is indeed a MAOI but is a "reversible" one. It acts on epinephrine (adrenaline), norepinephrine (noradrenaline), serotonin, and lastly dopamine.
Unlike the standard MAOIs, Nardil and Parnate, the side effects of Mannerix do not normally include cardiovascular complications (hypertension) with encephalopathy, liver toxicity or hyperthermia after consumption of a restricted medication or food.
I have found that in combination with a small dose of certain SSRI's that this combination of Mannerix/SSRI works very well for me, for a time.
Unfortunately, the effects don't last for as long as I have hoped, and I feel somewhat edgy with the extra norepinephrine in my system, but for a while I feel almost "normal" again after 25 years of feeling like an outcast of society, due to adhedonia.
Perhaps for you or some others here, you may have a better, longer lasting response to such a combination of medications.
Its a shame that these medications are not available through US doctors, as the FDA has not approved them for use here.
Posted by kaleidoscope on June 3, 2007, at 5:26:18
In reply to Re: What have I got to lose by having ECT, posted by Deniseuk190466 on June 2, 2007, at 16:31:38
Hi Denise
So have you ever tried clomipramine (Anafranil)? I think of it as a hard-core antidepressant.
Posted by linkadge on June 4, 2007, at 6:31:57
In reply to Re: What have I got to lose by having ECT, posted by Tomatheus2 on June 2, 2007, at 23:01:22
The reason why the "success rate" is so high, is that they probably try to assess depressive symptoms right after treatments.
At this point people probably don't remember depressive symptoms, nor much else.
You can't legally drive yourself home, but you can give an accurate assesment of your condition (?)
Linkadge
Posted by LlurpsieNoodle on June 4, 2007, at 10:41:21
In reply to Re: What have I got to lose by having ECT, posted by linkadge on June 4, 2007, at 6:31:57
That's an interesting point, Link
Especially since a lot of clinical interviews and diagnostic tools seem to focus on functioning within the last week or so. If you can't remember very much, one's mind has a funny way of filling in gaps, based on present functioning, or based on what the interviewer seems to be suggesting.
The human mind is our most flexible organ. It can bend time and physics...
Posted by Sigismund on June 5, 2007, at 17:35:45
In reply to Re: What have I got to lose by having ECT » linkadge, posted by LlurpsieNoodle on June 4, 2007, at 10:41:21
People think what they want to think.
When my mother had it I'm sure the doctor thought it worked.
I didn't.
My sister did.
Things improved when she got cancer and was put on low dose morphine.
But I would think that, wouldn't I?
Posted by linkadge on June 6, 2007, at 10:36:35
In reply to Re: What have I got to lose by having ECT, posted by Sigismund on June 5, 2007, at 17:35:45
Thats the thing. Doctors can often have selective vision for "recovery".
I remember going into the doctors office after a month on effexor. The doctor said I looked much better, and was glad I was doing so much better.
Did he ever once ask me if I actually *felt* any better? No.
If he actually "asekd" he'd find out I actually felt terrable.
Linkadge
Posted by deniseuk190466 on June 6, 2007, at 15:01:17
In reply to Re: What have I got to lose by having ECT, posted by rvanson on June 3, 2007, at 1:03:51
Rvanson,
Thanks, I had considered before Mannerix and an SSRI but I doubt very much that my psychiatrist would go for the idea. When you say small amount of SSRI, how small?
Also, re the Zyprexa, I also get a lot of anxiety with my depression and the Zyprexa helps a lot with that. Maybe amisulpride would too who knows.
Denise
Posted by rvanson on June 7, 2007, at 4:23:28
In reply to To Rvanson, posted by deniseuk190466 on June 6, 2007, at 15:01:17
> Rvanson,
>
> Thanks, I had considered before Mannerix and an SSRI but I doubt very much that my psychiatrist would go for the idea. When you say small amount of SSRI, how small?
>
> Also, re the Zyprexa, I also get a lot of >anxiety with my depression and the Zyprexa helps >a lot with that. Maybe amisulpride would too >who knows.I too have anxiety/insomnia along with my adhedonic depression. I use Xanax for that and it has kept me alive for many years now.
As to the Mannerix/SSRI med combo, I have used Celexa in a 5mg dose along with the Mannerix.
The Celexa seems to give it a boost in its anti-adhedonia effects, as well as helping with the jitteryness/anxiety side-effects.
I agree that most doctors are not going to want to try this combonation, so I have self-medicated for many years now, with a script for the Xanax from a doctor.Mannerix is not FDA approved in the USA, so finding a Pdoc here that will Rx it has proven futile over the years.
Life is too short to wait for politics and science to catch up with treating a condition as serious as the kind that we suffer from, IMO.
Have you made a decision on the ECT treatment as of yet?
Posted by deniseuk190466 on June 7, 2007, at 10:33:50
In reply to Re: What have I got to lose by having ECT » Deniseuk190466, posted by kaleidoscope on June 3, 2007, at 5:26:18
Hi,
No, I've never tried Clomipramine, although the first antidepressant I ever took was prothiaden (I think also known as doxepin) which worked wonderfully as did Seroxat when I moved onto that one next.
However, this time round, when the depression and anxiety resurfaced the prothiaden did not work even at maximum doses.
Wouldn't Clomipramine be very similar in effectiveness to prothiaden?
Denise
Posted by deniseuk190466 on June 7, 2007, at 10:36:44
In reply to Re: What have I got to lose by having ECT, posted by Tomatheus2 on June 2, 2007, at 23:01:22
Hi,
The symptoms listed are all pretty much symptoms of being depressed as well so I suppose it is difficult to distinguish what symptoms have been caused by the ECT and what symptoms have been caused by the depression.
Thanks for the link by the way.
Denise
Posted by deniseuk190466 on June 7, 2007, at 10:45:04
In reply to Denise: Re: What have I got to lose by having ECT?, posted by rvanson on June 7, 2007, at 4:23:28
Hi,
So you ordered the mannerix and Celexa off the web, were you not worried about possible serotonin syndrome. My worry would be by doing it like that would be that I'd get it, have to call an ambulance and then be chastised like a naughty girl for messing around with medication. I suppose at least if it is prescribed by a psychiatrist then you are being monitored and maybe they would be able to provide you with a drug to use if you start to show symptoms of serotonin syndrome.
Had you tried the Celexa and Mannerix alone and if so with what effects.
No I haven't decided on ECT, firstly because it's not being offered to me :-) and secondly because I keep reading really negative stuff about it, maybe I should try using positive thinking about it, i.e ECT will work, what have I got to lose, there is a chance it will work, if I don't try I'll never know.
When I went to this Day Centre I found it frustrating because they did this anxiety management class where they did these deep breathing exercises and visualisation and all those kind of things. I've been trying these things since I was 17, almost obsessively and they never worked. I told the Nurse that these things didn'd work for me and she said that it did work for everyone! and tried to imply that I wasn't doing it enough, wasn't doing it properly and was being negative about it. I find that sort of thing really frustrating, I know it probably does work for a lot of people but not for me.
Denise
Posted by linkadge on June 7, 2007, at 14:18:38
In reply to To Rvanson, posted by deniseuk190466 on June 7, 2007, at 10:45:04
I have taken both doxapin and clomipramine and can say that in my experience clomipramine is a more effective antidepressant probably by far.
Linkadge
Posted by rvanson on June 8, 2007, at 11:52:06
In reply to To Rvanson, posted by deniseuk190466 on June 7, 2007, at 10:45:04
> Hi,
>
> So you ordered the mannerix and Celexa off the web, were you not worried about possible serotonin syndrome. My worry would be by doing it like that would be that I'd get it, have to call an ambulance and then be chastised like a naughty girl for messing around with medication. I suppose at least if it is prescribed by a psychiatrist then you are being monitored and maybe they would be able to provide you with a drug to use if you start to show symptoms of serotonin syndrome.
>
> Had you tried the Celexa and Mannerix alone and if so with what effects.
>
> No I haven't decided on ECT, firstly because it's not being offered to me :-) and secondly because I keep reading really negative stuff about it, maybe I should try using positive thinking about it, i.e ECT will work, what have I got to lose, there is a chance it will work, if I don't try I'll never know.
>
> When I went to this Day Centre I found it frustrating because they did this anxiety management class where they did these deep breathing exercises and visualisation and all those kind of things. I've been trying these things since I was 17, almost obsessively and they never worked. I told the Nurse that these things didn'd work for me and she said that it did work for everyone! and tried to imply that I wasn't doing it enough, wasn't doing it properly and was being negative about it. I find that sort of thing really frustrating, I know it probably does work for a lot of people but not for me.<<<<Hello Denise,
I am a middle aged man now and have had many years to study many different medications and other treatments for my condition, so I am aware of serotonin syndrome as well as all the other side effects that treatments for depression may cause.
No, I am not a doctor of medicine, that is true, but after years of being treated by Pdocs I can assure you that most of them know little more then someone like myself when it comes to prescribing medications for depressive illnesses.
In fact, many of them do little more then copy each other and prescribe the most common medications at the time or whatever the pretty sales-ladies that the pharmacutical companies send over to the mostly male Pdocs to sway them to Rx thier lastest version of drug "XYZ".
When those fail, these docs usually try to blame the patient in some manner or another, as if we are to blame for being treatment resistant to the current crop of popular medications being foisted by the drug companies.
You must never be made to feel guilty for being ill with a sickness that is not well understood by even the most astute doctors of medicine.
I know that I may sound harsh when I speak out about most Pdocs, but I have dealt with these doctors for over two decades and some of them are in need of a psychiatrist themselves. Some are just plain greedy and out for a quick buck at your expense, not really caring if you get well or not, as long as your insurance pays up on time.
Yes, of course there are some good ones to be sure, but they are rare indeed, IMO.
Perhaps in the UK it is different then here, as I am aware of the fact that you have a national medical healthcare program for all the citizens who reside there, unlike the US.
I only caution you about undergoing ECT because the side effects of this treatment are very major, life-changing memory losses and if we cannot remember our life's', then we have a condition that only adds to our misery from the depression and/or adhedonia and makes living even harder then it was before.
Of course, you are correct as well: if you do not try ECT, you will never know if it could help, and you may well benefit from it, but you have to realize that it is a *BIG* risk you would be taking and one that may well be irreversible and make matters even worse,
as it has done for so many other people.As to my own medical use of various anti-depressants, including Mannerix and Celexa: yes I have tried both of these alone, but together they work well, but only for a time, mores the pity.
By themselves, they are not as useful, by far.
Celexa is a good med for depression with anxiety but it is an unmotivating medication, not a good one for adhedonia, IMO.
Prozac is a much better med for adhedonia,
if one is simply considering the SSRI class of meds, but it often causes anxiety and other problems that many cannot tolerate for long.Mannerix is a great med for motivation/adhedonia but causes increased anxiety in myself, at least, to the point where I cannot take the extra irritability, insomnia & anxiety even though I feel much more a "normal" person while I use it.
I am also more social and much less prone to avoidance behaviors caused by the adhedonia, when I use Manerix in combination with Celexa.
My point is really that the human brain, nervous sysytem and it's workings are still not well understood by current medicine, even though much has been learned in the past century and this one as well.
One thing that we have learned is that no one person is the same and that what may work for one person, may be detrimental to another.
One day,there will be very successful treatments for most human illnesses and sufferings, including mental illnesses like adhedonia, but until that time comes we need to work with whatever we have available now and hope for
the best.
Posted by deniseuk190466 on June 8, 2007, at 15:13:03
In reply to Re: To Rvanson » deniseuk190466, posted by linkadge on June 7, 2007, at 14:18:38
.
Posted by deniseuk190466 on June 8, 2007, at 15:19:29
In reply to Re: To Rvanson » deniseuk190466, posted by rvanson on June 8, 2007, at 11:52:06
Hi,
I have to agree with you about psychiatrists, they don't really know any better than we do about treating Depression/anxiety. That is not to blame them though becaue this condition is still such a mysterious condition and not diagnosable in a biological way. Really when it comes to TRD they are just clutching at straws. I also agree with you that when drugs or treatments don't work there is a tendancy to blame the patient. The latest label for people who don't respond to medication seems to be "Personality Disorder".
I'm sorry that the celexa/mannerix combo only works for so long for you, what are you taking now?
Denise
Posted by rvanson on June 9, 2007, at 0:46:46
In reply to Re: To Rvanson, posted by deniseuk190466 on June 8, 2007, at 15:19:29
> Hi,
>
> I have to agree with you about psychiatrists, they don't really know any better than we do about treating Depression/anxiety. That is not to blame them though becaue this condition is still such a mysterious condition and not diagnosable in a biological way. Really when it comes to TRD they are just clutching at straws. I also agree with you that when drugs or treatments don't work there is a tendancy to blame the patient. The latest label for people who don't respond to medication seems to be "Personality Disorder".
>
> I'm sorry that the celexa/mannerix combo only works for so long for you, what are you taking now?
So am I. It seems to "poop-out" after a week or two and I have to wait months to restart it again. Its nice to have a safety valve that works for a time, at least.
When I am not experimenting with new combos of medications, I use a Prozac and Xanax combo which keeps my head above water here in the USA.I work a full time job and that is another reason I am concerned about the use of ECT. If I lost my ability to focus or remember I would not be able to perform my work and could easily end up making much less money working at a dead end job that would not allow for the purchase of medications or much else.
We have no "safety nets" here in the states for people who fall through the cracks of the system, and most such people often end up in jail for one reason or another.
Needless to say, that thought is not a pretty one and hence ECT is not an option for me.
That is how I justify my use of medications without the use of a Pdoc in most cases, though I do have a script for the Xanax from my physician.
I do not use illegal drugs nor any other substance which has no proven use for my condition, so I dont worry much about getting into trouble with the law over this matter.
As to the Pdocs blaming us for our illness, thats just frustratation working and I would prefer that they just admit that they dont know why we dont respond to current medications at this time instead of playing a blame game.
Honesty is the best policy and I wish doctors would just spell it out plainly like they do when people are told that they have a terminal illness that cannot be cured at this time.
Posted by Deniseuk190466 on June 9, 2007, at 14:54:48
In reply to Re: To Rvanson, posted by rvanson on June 9, 2007, at 0:46:46
Hi,
Yes it is good that you have a safety valve, I've always seen Zyprexa as my safety net. Maybe I should try an SSRI and Mannerix. Are you sure Mannerix effects dopamine though.
As to wanting the doctors just to be honest and spell it out, noooooo, I don't want that at all afterall as I think somebody on this board said, hope is suicide prevention. I want a docter who will tell me we will keep on trying until we find something that works, not somebody who throws their hands up in the air and says they've done all they can.
Denise
Posted by rvanson on June 9, 2007, at 22:58:03
In reply to Re: To Rvanson, posted by Deniseuk190466 on June 9, 2007, at 14:54:48
> Hi,
>
> Yes it is good that you have a safety valve, I've always seen Zyprexa as my safety net. Maybe I should try an SSRI and Mannerix. Are you sure Mannerix effects dopamine though.
>
> As to wanting the doctors just to be honest and spell it out, noooooo, I don't want that at all afterall as I think somebody on this board said, hope is suicide prevention. I want a docter who will tell me we will keep on trying until we find something that works, not somebody who throws their hands up in the air and says they've done all they can.I see your point about having hope, Denise.
But I am a realist and am older then most here and I dont need a doctor for hope as I have supplied my own using my body and brain as an experiment in subduing my adhedonia.
Too, I have had some very bad run-ins with doctors in the past, as they seem to think a college degree and eight years of medical school gives them some right to treat me as an imbecile or as a lesser being then they are, simply becuase I am ill with a sickness they cant treat.
All I can say to all the medico's who act this way is "Wrong thinking, doc!" :-D
Perhaps my reseach in using off-lable, non-standard treatment will be picked up by Dr Bob or another phyician someday and doctors will have a better handle on this illness and how to vanquish it for good.
Mannerix is technically called a RIMA (Reverible Inhibitor of Monoamine oxidase and it primarily effects the Monoamine Oxidase type A, and not much on type B, the one that effects Dopamine
but still it does have an Dopamine leveling quality that is noticable.Unlike Nardil or Parnate, it does not inhibit both A and B equally, but then its safer as it does not cause the dreaded high-blood pressure "cheese effect'" either.
Its only an matter of time before there are more such medicines in the pipeline with any luck.
In fact, Mannerix does have a similar sister medication already, but it is not available anywhere that I can find it, outside of a laboratory.
Posted by Tomatheus2 on June 10, 2007, at 0:05:55
In reply to Re: To Rvanson, posted by rvanson on June 9, 2007, at 22:58:03
> Its only an matter of time before there are more such medicines in the pipeline with any luck.
Rvanson,
A RIMA called Tyrima is currently being investigated by a pharmaceutical company called CeNeRx. The results of a Phase I clinical trial involving Tyrima were announced in March:
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/03-13-2007/0004544793&EDATE=
Time will only tell whether or not Tyrima or one of CeNeRx's other investigational RIMAs will successfully make it to the U.S. market.
Tomatheus
Posted by deniseuk190466 on June 11, 2007, at 13:22:18
In reply to Re: To Rvanson, posted by rvanson on June 9, 2007, at 22:58:03
Rvanson,
I see my psychiatrist tomorrow and don't know what to say to her other than the lexapro is helping but not enough and the Zyprexa does help with the anxiety which I knew already.
I was thinking about ordering mannerix but if I can't seem to find many good experiences with it and i didn't feel particularly good on Nardil. How did you add it to the Celexa, were you already on a low dose of celexa first or did you have to taper it first before adding the mannerix.
Also, have you tried any stimulants in addition to an SSRI?
Thanks....Denise
Posted by rvanson on June 11, 2007, at 17:50:41
In reply to Re: To Rvanson, posted by deniseuk190466 on June 11, 2007, at 13:22:18
> Rvanson,
>
> I see my psychiatrist tomorrow and don't know what to say to her other than the lexapro is helping but not enough and the Zyprexa does help with the anxiety which I knew already.
>
> I was thinking about ordering mannerix but if I can't seem to find many good experiences with it and i didn't feel particularly good on Nardil. How did you add it to the Celexa, were you already on a low dose of celexa first or did you have to taper it first before adding the mannerix.
>
> Also, have you tried any stimulants in addition to an SSRI?Yes I have, but I don't respond well to them. I don't get any "high" on the amphetamine-type medications, only nervous and jittery.
I started Celexa when it first came on the market. I was up to 40 mg at one time. It does help with anxiety, including social anxiety, but it makes me "lazy" as well.
Its worthless for adhedonia.
As far as Nardil vs Mannerix, they both "feel" like very different medications to me.
Nardil was effective for a year back in the 1980's, but it wore off after
a time, though lasted much longer then the Mannerix has.I take the Mannerix at the same time as Celexa. Twice a day: 150 mg of Mannerix and 5 mg Celexa for a total of 300/10 mgs. respectively per day.
I have found Lexapro to raise my anxiety levels unlike its cousin, Celexa, so I can understand why you don't like the Lexapro.
I wish I could handle Zyprexa but I feel spaced out on it and cannot work or drive safely when have tried it, so you are lucky about that fact.
Q: Is Mannerix available from your doctor or the pharmacies in the UK? Can your doctor prescribe it for you?
Good luck with your doctors' appointment tomorrow, Denise.
This is the end of the thread.
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