Simon: Introduction

[WinningThrough]

Please don't be embarrassed simon. Don't feel pressure to be positive. Just be however you need to be at any given moment. Just get through it in whatever way you need to. Say how you feel. You don't need to edit yourself.

 

It's going to be okay.

[simon]

Many thanks WT, ive sent you a pm, hope that's ok.

Simon

[Petunia]

Simon, I also have very mixed feelings about 'being negative' on my thread.  Many times I have written details about how bad its been and I've had to force myself to press the post button,  a few times I've deleted what I've written and not posted at all.  But other members have said how helpful it is when we post about our bad times along with the good time because it gives validation to how they are feeling too.  Not everyone is able to write about how they are feeling and when someone else can put your feelings into words (for you), it helps you feel less alone, less isolated.  I have used knowing that to help me keep posting on my own thread when I haven't always felt comfortable doing it.

 

When I was new here, I often found reading other people's descriptions of what they were going through would help me understand my own experience.

 

I know there seems to be pressure to only be positive and encouraging, but the reality is that withdrawal can take some people to the depths of suffering which are impossible to imagine if you haven't been there yourself, I don't think that should be hidden.  There's nothing to be ashamed about, I think all of us are incredibly courageous and strong to be able to endure what we go through in this recovery process.

 

I hope you are feeling better after your really bad day.

[simon]

Yes you make a very valid point Petu, never really thought of it like that.

Actually I do feel ashamed of what happened yesterday although, like you say I have no need to be.

I feel a need to express everything that goes on............and yet.

I will see if I can send you a pm, but I notice that some people don't take them. How do I know before writing one and trying to send it ,if this is the case? There must be a little box somewhere on that page that says yes or no.

Thanks very much for your reply.

Simon

[simon]

Well the weekend has been one i wish i could forget, because i became so despairing that i nearly went over the edge, a place ive never been before thank God.

I wonder if im becoming obsessive about this whole drug thing, but i cant leave it alone.When the reality of being now on 4 meds and being in a very low place,set in, i couldn't take it.

Its the ups and downs, the windows and waves (although i cant really claim to have got that far yet) that get to me. Not being able to understand how you can have 3 weeks of normality only to be in the depths again almost overnight. Its soul destroying and tearing this family apart with the uncertainty.

 

Ive just been talking on the phone with someone from the local crisis team, first time ive done that. He spoke quite casually about people getting off meds in weeks, that i must be one who is rather sensitive to the effects of them. Other people he sees are addicted to 40mg of diazepam.,not just 8. I just don't get it. I feel myself almost blaming the drugs when its the underlying problem which may be the cause.

Anyway, he has his job to do and their aim is to support you if need be at home instead of admitting to hospital.

A good friend in London has asked me to chart the last few months on paper; a list of drug, amount, mood, sleep etc. Then she will show this to her Psychiatrist friend and they will look for any pattern that emerges and get back. Ive done that the best i can; it took ages.

Simon

[dalsaan]

Hi Simon

 

I think the windows/wave pattern is very difficult to work with for those of us that are used to thinking in rational linear ways or who are quite proactive in our lives - we want to understand the cause and effect dynamic at play and do something about it!

 

I don't think it's that simple. The brain is a complex thing and we have assaulted it with very blunt and non discerning medications that trigger all sort of effects in their presence and absence.

 

You have had heaps of changes in the last few months alone, going up and going down in dosages across a number of meds. To me your system is screaming out for a break. When I look at your mirtazapine alone you have dropped over 20 percent in under two months, alongside drops in other drugs. That's a lot of change and it comes after significant withdrawal in the middle of the year and accompanying crises.

 

Sometimes the effects of changes are delayed and when you are making a number if drug changes at the same time it can be very difficult to work out any pattern.

 

What's your plan from here and would you consider holding for a while?

[simon]

Thanks for your reply Dalsaan

I do indeed plan to hold things. These doses have come about by pressure from health professionals and caving in under the pain of 'depression', seeking relief, but no being rigid enough in taking one line or the other. Sitting on the fence if you like. I find it so hard to distrust people who are supposed to know what theyre up to.

Pressure from family who are more conformist than  i tend to be; having a very good GP, but one who doesn't know enough about psych drugs.

I kept drawing a line in the sand, then getting new advice, and because i needed the support of these people, being in a vulnerable state, i must have caved in.

That reduction  from 45 to 35 for instance was trying to find a baseline to begin tapering, only having been on the high dose a couple of weeks,(suggested to help sleep) i  just thought to return to the lower dose that id been on for years.

I was going to start from 35mirt, 20 Cit and 600 Lithium, then a new foe, the benzo  reared its head and found I was hooked. Id been attempting to get that down to 5-6 then hold til id started tapering an AD.

Last week i crashed badly after 3 weeks of feeling fine and by the end of that week i very nearly wasn't here.

More or less decided to hold the diazepam at 8mg on advice from the benzo forum. But i can tell you, i didn't want to be in the place i am now.

I don't know how some of you guys have the resolve; i so admire it. I wonder if I really can muster that up myself or if i will take the 'easy' way out again!

But thanks for your advice.

Simon

[mammaP]

Sorry that you have been feeling so down Simon. I agree with Dalsaan, you've made a lot of changes 

and your poor brain needs a rest.  Last year I was at rock bottom with withdrawal and suicidal. I was here 

and it was the people here who helped me through. I still get those feelings when a wave hits but now I

understand what it is and can manage to distract myself and 'change the channel' http://survivingantidepressants.org/index.php?/topic/846-change-the-channel-dealing-with-cognitive-symptoms/  . 

 

Be kind to yourself Simon, you will have windows and waves along this journey, and when a window opens 

you will be so glad that you got through that wave. Enjoy the windows when they are open, and let the memory of them

carry you though the waves.  It is such a shame that the benzo complicated things for you, and I think you are right to

hold that now while you concentrate on the others.  doctors and psychiatrists sadly haven't a clue about the horrors

of these drugs, and usually say that withdrawal is actually a relapse of the original illness so they bump up or change 

the medication for something equally damaging.  They are educated by the drug reps so there is no wonder they haven't a clue! 

Most of us here have ended up just going along with doctors just to get the prescriptions then tapering ourselves. 

My doctor told me to taper every other day then come off after 2 weeks. I tried that several times over the years and they said

I needed it for life because every time I tried to get off I became ill again, hmmmmm, we all know why that was!  

In the end I didn't tell him and just tapered myself. 

 

Don't be afraid to write how you are feeling here, it is what your intro is for, it is your journal.  

[simon]

Yeah, thanks for that mammaP

 

Don't you find though that in a wave its hard to remember a window. Its like youre 2 different people and that from one its hard to peer out to the other?

I don't really feel i can call it by these terms;, I think its instability of recent times and changes in drugs and probably the after effects of coming down from diazepam. Think the high points must have been diazepam induced.

But it can wreak havoc in a household, esp when spouse has been devoted and hopeful for months of things improving;then comes the up, then down again and the recriminations that ive been changing drugs and ignoring professional advice. She has no time for the notion that a drug could be causing a problem.

 

Actually , this evening ive been writing out a resume of what this forum stands for,as i have a friend in London who works in mental health and im interested that up there they have some quite forward thinking ideas. They employ people for example who have had ' depression' and one of the psychiatrists is  i think on 3 types of medication. I don't think that could happen down here in the sticks yet. But if these people are, themselves on the drugs it must make a vast difference to their attitude.

 

Time to hit the sack.

 

Simon

[Petunia]

Don't you find though that in a wave its hard to remember a window. Its like youre 2 different people and that from one its hard to peer out to the other?

 

Yes, definitely, I'm the same way. But one of the benefits of having an update topic here is you can document everything you go through, including the windows, the better times, then when you get hit by a wave, you can read back through your topic and it reminds you, there's no doubt because you are reading your own words.  This has helped me many times, its unbelievable how our memories of better times get completely blocked out by waves.  I'm actually in the process of reading back through my own thread right now, I'm amazed at how much I have forgotten.

 

Recovery Road website has a good section for family members of people going through withdrawal, it has easy to understand information about what's happening and advice about how to be supportive, perhaps its would be something your wife could look at:

 

http://recovery-road.org/for-family-carers/

 

I also think that a long hold is in order, and I'm happy to see that you agree.  Perhaps you could find a good counselor to talk to, someone from church or local support networks.

 

I'm so glad you are still with us

[simon]

Yes, Petu, that's a very good point to look back over 'windows' I must do that. The mind really does play tricks.

(just had a look at that 'recovery road' site, I realise that ive seen it before and I like the advice.)  In my case, talk of withdrawal though would be met by a blank wall at the moment, as my spouse wants me back where I was before I started messing about with medication changes. you just want to see your partner or loved one stable and functional and anger can flare up when you see them upsetting what seemed to be a balanced state (in my case a few months ago)

Its terribly hard for someone who has supported me to see these ups and downs, to have to pick up the pieces over the years, the sheer instability of it all.I can see how things end up in break-up. She has been an absolute rock over the years and has had to put things on hold, to take care of me. It looks like this time, unless I do things in a conventional way,then help is not going to be so available.

If only this method was the orthodox way!

Cant seem to get that 8mg of diazepam out of my mind. I think I get obsessed about it. Probably very angry deep down.It feels like a poison to me now, and yet I have to take it.I blame myself for getting into it when all the sensible advice was to steer clear. I sometimes think that I don't have the resolve of many on this site to simply sit with the anxiety and wait things out. I took the short cut, the easy option for getting relief and now have to cope with the consequences. That's what almost pushed me over the top last Friday.

Anyway, that's all I can do now,wait and see.

Thanks for your help everyone.

Simon

[Frustrated]

I don' think you should beat yourself up for trying to feel better.  I reinstated a small amount of my AD 2 weeks ago when I had been off it for 5 months.  I have really been beating myself up for that, but others have told me that it is just taking care of yourself not a step back.  You need to make sure that you can live your life and function the best you can WHILE you are going through WD.  It is a hard road but you will get there.  Be kind to yourself and bless you.

[simon]

Thankyou for your reply, F,

yes im sure I will get the hang of this all eventually. Very easy to think you've grasped it when things are going well. When the crash comes it really does shake me. It is a hard road like you say and im at a very early stage on it.

Hope your quest continues to bear fruit.

Thanks again

 

Simon

[JanCarol]

Be gentle with yourself Simon.  If you have to updose, then do it.  Beating yourself up for it won't help.  "Ruminating" as Jon Kabat Zinn would say, will only increase the depression.  Let go, be gentle.  You deserve to be okay, and to be okay with being okay.

 

I recognize that you think diazepam is a poison.  Likely it is, but it is less toxic than the antidepressants.  I'm not saying it's not evil, it's just a lesser one!  Don't even go there yet!  Stable, stable, stabilize first.

 

In an ideal world, you could do your tapers slowly enough that the waves become bumps.  And you can control them by choosing to hold.  

 

I hope you can find a stable place from which to hope.  

[simon]

Ive brought the conversation back into my thread to hopefully broaden out what ive been talking to a few members about.

That is , that I came under enormous pressure from my GP yesterday to accept conventional advice and change my 20mg Citalopram for 75mg venlafaxine. then150mg after a week. At once iin one fell swoop, no tapering.

I know its against all ive come to accept about these drugs on this site and im gutted to say the least.

I feel I know what the advice here is going to be.

I took 37.5 yesterday and 75 today, and no Cit today.

When I looked up the' official' advice it implies that SSRIs can be switched 'safely', at once, but not Prozac and the MOAIs. What should I expect now?Is this the equivalent of CT?

Has anyone done this?

I know its completely against the ethos of this site. Just wondered how safe Ill be.

Simon

[dalsaan]

Hi Simon

 

You've read a lot here about people's experiences. Stability and careful tapering are the key ideas here.

Unfortunately no one can say what will happen with that kind of change, particularly on top of all the other changes you've already made. Only time will tell. It's best not to catastrophise in advance otherwise that can become a self fulfilling prophesy.

 

I wish you the best

 

Dalsaan

[simon]

Thanks for your reply Dalsaan.

This solution is neither stable nor careful tapering I realize that.

I just feel so exhausted by the whole business now.Im in a corner, back to the wall.

I feel extremely drugged up , very slow mentally, in a fog, and 'wired'. only getting a few hours sleep a night.

We'll see what happens.

I cant expect to get advice from this site on the above, as its outside the remit. Who knows, I may give up taking the advice of my GP.

Simon

[simon]

I'd really like to stay as part of this forum but feel the position ive got into goes against everything ive learned here. I'm so confused over what ive done in taking on a new med and im still not sure if im going to stay on it (its only been 2 days so far)

Nothing is forcing me, but unless I do something about this low mood in the short term, I don't know how I will get through, after getting so near the edge last week.

I feel part of this place and at home here, but im in an awfull dilemma.

Simon

[WinningThrough]

You're just doing the best you can in a very difficult situation. I hope this change will work for you.

 

You need the support so keep posting here. We are here to support you.

[Frustrated]

Please don't leave!  We can still be a support to you, Winning Through is right.  If you feel in a dilemma then you need to be here to get help to figure it all out.

[simon]

thankyou for you kind support WT and Frustrated.

If only there were some of you guys here in the flesh to talk sense into me.

Half of me wishes id never learned the truth about these drugs at times. But the mental turmoil has become so great that ive done the only thing I know.

I also wonder if ive just been on the stuff too long now to be able to do much about it. When I think how long it would take to even get to low doses.

I only pray that is not the truth.

I so much admire the resolve and courage  I see on this forum, its quite awesome.

Thanks again.

Simon

[tgirl]

Hello Simon,

Just wanted to wish you a happy new year!

[Rhiannon]

I'd really like to stay as part of this forum but feel the position ive got into goes against everything ive learned here. I'm so confused over what ive done in taking on a new med and im still not sure if im going to stay on it (its only been 2 days so far)

Nothing is forcing me, but unless I do something about this low mood in the short term, I don't know how I will get through, after getting so near the edge last week.

I feel part of this place and at home here, but im in an awfull dilemma.

Simon

 

Simon, we don't have an agenda that anyone has to follow to be accepted or supported here; it's just that we can't really help people who don't take our advice. Help in a concrete "how do I get better" way, that is. But you are completely welcome to be here.

[simon]

That's very kind of you, T, and the same to you too.

I want to express to anyone who's been following my thread that ive been feeling dreadful, suicidal actually over the Xmas period because not only did my visits to medical people get me hooked on a benzo, but also a change of drug. I just don't want to be in this situation. It s as if I cant take responsibility for my own life, im still in a mindset of trusting professionals, especially when im brought to my knees by anxiety and depression.

So ive in effect been CT'd of Citalopram onto Venlafaxine and im wandering if I should just go back to what I was on. (as a matter of interest, after 5-6 days on this regime, would it make any odds? I know its not stability, I know its not safe and  I know its not simple- all the mantras), but say I returned, now to the old drug? Everyone seems to think that Ven is a killer. Could it be better the devil you know?

Simon

[simon]

Thanks Rhi, you must have been writing as I was writing the above.

Thanks for making that clear

Simon

[Rhiannon]

Simon, overall it's best to pick one source of advice and stay with it rather than switching back and forth. Especially in this case where your sources (the GP, and us) contradict each other.  We can't be giving you advice on what to do if you're working with someone else and switching back and forth between our advice and theirs.

 

If you read back through your thread you will see the advice you have been given. Nothing has changed. It's up to you to decide what path you are going to follow.

[Rhiannon]

LOL I overlapped you again!

 

My heart goes out to you, it's a tough situation, under pressure from family, and suffering.

[LoveandLight]

Sorry your feeling bad. I understand feeling that you cannot take responsibility for your own life. But, being in the care of psychiatrists and doctors for a long time, I think this is one of the effects of this so called care - not being able to trust yourself.

 

Hope you feel better.

[simon]

Thankyou Joannad and Rhi

I guess im asking questions that only I can answer.

I have an appointment in the morning with my GP, he will again point me to his screen on which the psychs report will have said, Pregabolin, Double up Citalopram, Take 12mg diazepam, or Venlafaxine. At least I get a big choice. A Psych up in London (via a friend) would have suggested just Lithium and get rid or the rest. So theres nothing consistent amongst these professionals.

I just think mine is coming across with the opinion that whatever I take, its a last ditch attempt anyway, so what the hell.

I'm starting to get cynical !

Simon

[Flowers]

Hi Simon

 

Just read your recent posts and am so sorry you have been suffering so much lately. As you know I am new to all of this  so cannot offer advice from experiences like the experts on here can. I do understand though that it is awful when you so want to be well but can't put your faith in Dr's to help you.  This very thing led me to this site!

 

I would love to hear how you got on at the Dr's this morning - I am thinking of you and hope that you find some peace soon whichever way you decide to go.

[simon]

I'm writing this as much for my own benefit as anything else.

I went to see my GP this morning, having spoken to him on the phone on the 24th after a suicide attempt.

The points I made to him I had written down were something like this (he kept the notes I had made)

1 My suicide attempt was a response to getting caught on yet another drug (no 4, diazepam)

2 Loss of confidence in Psychiatry. The 'choices' I had been given during my 2 consultations with the psych over the last 2 months had been,a) pregabolin ,b)double up Cit c) take 12mg diazepam as that had helped a few weeks prior, d) replace Cit with Venlafaxine, e) begin a taper of Lithium.nb. not all at the same time.

3 The need for stability

4 Side effects of being polydrugged over the last 7 years have led to serious emotional and cognitive decline.

5 Belief that drugs can cause the problems

6 No evidence for chemical imbalance-that its the SSRIs that create the chemical imbalance and eventually have no positive effect.

7 Before SSRIs came on the market the average 'depressed person' would get over their problems over several months and 80% would never have another occurrence.

8 Now,most depression becomes chronic and  life-long.

9 CEPUK  The Myth of the Chemical Cure, by Joanna Moncrieif ( thankyou to Jan Carol for suggesting that one)

 I am lucky to have this GP. He is devoted, caring compassionate.

I genuinely believe him when he said he went along with all I said, apart from a little query on the chemical imbalance.

That hes not just saying that because of the dire state ive been in. He attempts to use every other method before the drug one.

That hes totally behind my desire and need to get off this polydrugging.

That as soon as my mood shows signs of improving he will back every effort to come off drugs such that im down to one.

His only proviso is that I take venlafaxine until it lifts my mood sufficiently to begin that work with me.

That he will talk to me any time, hes not in an ivory tower, that's he was genuinely upset about my drastic action.

He wants me to have a CPN to talk to from time to time( community psychiatric nurse)

 

Ive got to have this guy on my side. He is open to new thinking, He knows how much I delve into any medical matter I may have, the need on my part to understand any treatment I am being given and is right behind that.

So im going to continue with the Ven. because I owe it to my family to stay alive. Im doing it as a means to an end in a desperate situation. I hate the drugs as much as any of you, but in my situation its the better of two evils. I don't know what effect it will have on me, I cant tell. We shall see. Its a means to an end and not an end in itself.

Thanks for letting me get this down. I know I cant expect support on the drug side of things here, but ive had tremendous support thus far by so many of you here and I don't want to lose it.

Simon

ps ~Thankyou Flowers for your kind post.

[WinningThrough]

Hi Simon. I'm so very, very sorry you are feeling so bad and going through this. You will come through this.

 

It can be very hard to know what to do when you are feeling trapped and confused and feeling so bad that you just feel the need do do something, anything, to make it all go away.

 

Time is the key and as you slowly titrate off the drugs and get stable things will be better.

 

Take care.

[JanCarol]

Wow SImon, what a great presentation you made to your Doc!  So - he still is programmed to believe in "chemical imbalance?"  Oh my.

 

but listen - I know you are on a lot of drugs - but I know people who are on more.  Everybody's different.  I can't tell you what is right for you, only you can.  And if staying on the Venlafaxine keeps you stable - then hurrah!  You are ready to begin!  

 

I have 2 friends who are on at least 5 medicines, with at least 50% of those being neuroleptics.  One of them is going back to Uni for a masters, and the other ran 10 marathons this year - 3 of those were ultra marathons.  So yes, the drugs are wicked - but that's not the only answer.  You think you are snowed under the drugs, but you also see there is a path to better manage your symptoms.  I think you've taken an important step toward stability.

 

So good on ya!  You've picked a course of action, now stick to it until you feel well enough to make your next choice!  

[simon]

yes thanks WT, I sent you a pm

Simon

[simon]

Thanks Jan for your support and wisdom.

Simon

[JanCarol]

So - it's been a few days since you switched meds to the venlafaxine - so - how is it going?  (silly season and all)

 

Take care, Jan