Tuesday, 11 September 2007


Drugs do not work in my case, and it's taken quite a while for my doped mind to figure this one out. Now my body is giving me clear signals that I have to do something about it.

Don't read on if you feel you may become distressed. I won't be writing like this very often, but I have to get this out.

I wasn't doped up three years ago when I was exhibiting very clear, checklist-like M.E. symptoms. Nobody I saw in the early days had the expertise to pick up on what was wrong, or the sense to refer me to someone who could help.
So how do you treat someone who crashes into your clinic in a state of physical crisis and emotional turmoil? Let's put ourselves in the shoes of your average UK psychiatrist for a few moments.
Picture the scene from the other side of The Desk. Occupy for a moment the tiny mind that is governed by the DSM (the handbook of mental disorders used by every dysfunctional doctor who lacks perception, life experience or empathy). What would you be thinking?
"Jeeeesus Christ."
Look at clock. Reach for DSM.

And that's about it.
Really. Truly. That's what happened. Each psychiatrist I saw, whether at the clinic, in a respite house, during home treatment or in hospital added something new. The excuse has been that each of them was only trying to help. But throw in the combined efforts of a couple of seriously clueless GPs along the way and nobody communicating, and you get my current prescription.

Zopiclone - a sleeping tablet: addictive.
Valium - a tranquilliser: addictive.
Propranolol - a cardiac drug, given for anxiety symptoms
Mirtazepine - an antidepressant which made me eat my way out of malnutrition, only now I'm far from malnourished
Lansoprazole - used to treat gastritis and stomach ulcers. It was severe stomach problems that caused me to need hospital treatment for malnutrition. Brought about quite possibly by overloading my stomach with medication. Now I need Lansoprazole to keep my stomach functioning.

An average day: I get up, get my son breakfast. I am in a stupor, hungover from my night medication. I take my morning propranolol after he's gone to school, so I can function at least whilst he's around. If I don't take it I seize up. But when I take it, it puts me back in bed for two hours. I am not safe to so much as boil a kettle until the effects have worn off. The rest of the day is floaty. I have valium and more propranolol at 6pm. I feel groggy. I take all five drugs at bedtime. If I try to cut down on anything I fit, vomit or shake. I have been on this medication regime for more than two years. My hormones are shot to bits, I have back problems, jaundice and something vaguely referred to as 'mood disorder'. That'll be the drugs then.

Rehab was discussed but ruled out by the M.E. team who finally came into the picture sadly after I'd been put on this disastrous cocktail from hell. I have something called Multiple Chemical Sensitivity. It means my body is groaning under the pressure of these drugs, not metabolising them very well, and yet will go into crisis if withdrawal is mishandled. Not surprisingly, no one wants to go near my prescription. I can't do rehab. I don't want to be in a longterm state of withdrawal, and yet I have no choice. Five drugs to kick. One at a time. Very slowly. I'm guessing it will take the rest of my son's childhood. Robbed is such an inadequate word. Here's a few more. Violated. Abused. Fucking Furious.

So there you have it. I'm finally out as a prescription junkie. But I hope you all understand that it's the last thing I wanted to happen, and I never would have thought it possible that the strong, capable person of four years ago would end up like this.

Why have I done this now? Because I wanted to. Because it's time. Because I'm not ashamed. And because I don't want anyone to ever live even one day like I had to for months on end in the not so distant past...lying on the bathroom floor, less than seven stone, too weak to lift my head to vomit, my then partner trying to keep my son away because the scene was just too terrifying.

"Is Mum being sick again?"
"No, now come downstairs. It's nearly time for school."


D Phoenix said...

Thank you for being so open and honest. It sounds like these last few painful days lead you to a place of righteous anger and (painful) clarity. I can see why you are so furious with what has happened and the kind of "treatment" you received. I know you are not the only one to find themselves on a very bad cocktail of drugs.

I do hope that you are able to take along an advocate when you go to see someone for help with getting off the meds. Not only are you drugged up and sick, you are stressed and tired... I know from experience that this is a very hard place from which to speak clearly to a medical professional. No shame in being on these drugs; no shame in needing help to communicate what you need.

Many of us go forward minute by minute or hour by hour and we try to get what we can out of life. Your blog is important to me and many others.

S. said...

Seahorse, I'm here, I'm reading, and I think you're brave and right to be angry.

Anonymous said...

I too wanted to let you know that I am here and I am reading, sorry I can't offer any help our advice but my thoughts are with you {{{HUGS}}} and love, T (talj) xx

Anonymous said...

I tried to leave comments yesterday on your other posts but couldn't find the right words. So I'm having another go now.

I don't see any shame in what you've said. I see a great strength and resilience. I see appropriate anger and frustration. I see someone having amazing moments of clarity despite a haze of medication, great stress and illness.

I expect many people end up in similar places - because you put your trust in your health professionals and because (lets face it) you're ill and not able to have the answers yourself. And it's difficult to get meds right - but what is so disappointing is an inability (individual or systematic) to persist with the patients best interests at the fore and not just stop when things seem "sort of ok".

I think if you can now tell your GP, ME team and whoever that you are ready to tackle this but you need their support - then I think they will respond positively. I hope they will.

I hope you find someone with as much courage as you and with a medical qualification to boot that can actually HELP YOU!

Hang in there.

fluttertongue said...

OK here's my twopenneth for what it's worth: Propanonol seems to be given out for all the wrong reasons and I think it's got me where I am today. There needs to be a SERIOUS reconsideration of it's usage. Valium I was given on a particularly bad day - not by my regular doctor but by a person at the walk-in clinic, who had no idea of my history. Another thing that put me here is a summer I spent looking after my Nan, who had an addiction to tranquilizers and whose doctor suddenly stopped prescribing them. I don't know how this doctor came to the dsecision that putting an 80 year old in cold turkey was a good idea but good God I hope something unfortunate happened to them on the way home from work.
Now, antideppressants. These I was put on by a gastroenterologist of all things when I was wee. Again, they have a lot to answer for.

I think the lack of time doctors have with their patients are part of the problem - they just give out pills as a way to put off dealing with the problem.

I am so sorry this is happening to you. You're an extremely resiliant woman.

Cusp said...

I'm not sure if my last comment went through so I'll try again.

I can't see that you have anything to be ashamed of or guilty for. You are doing your best and when you accepted those drugs it was, no doubt, within an atmosphere where you were desperate for something, anything to make you feel better.

However, it woudl seem that this dreadful cocktail which has been doled out in a haphazrd nan disconnected way may be making you worse rather than better and, if possible, do try to get some support so that you can ask GP and ME team to help you begin to withdraw from some of the meds.

I do realise that this is much easier said than done. I have been hesitating to withdraw form my own one med. becasue I'm afarid the withdrawal symptoms may make my situation even worse and I won't even have the tentative hold I have on som eosrt of noramlity within the relationship with my children and partner.

I do hope you have or can find some kind of support or advocate who will go to the GP with you and insist that something is done. They may be afraid to touch the meds but they got you into this so they must try to get you out.

I'm afraid it seems that whichever way you turn in the ME world you are liable to be abused, deprecated and violated. This condition seems to bring out the worst in some people in authority who use the confusion around it to build upi their own egos, wallets and reputations.

Take care

Kara said...

I'm here in the US and I know our medical/mental health systems differ, but I think the problem with some of these issues is bigger than individual doctors...more of a structural/system problem. I work in a children's psych unit and inorder for their insurance to pay for them to receive ANY treatment they have to "fit" criteria for a DSM diagnosis....they've come there (or been brought by parents) for treatment and to choose NOT to select a DSM diagnosis would deny them treatment......it's such a cyclical problem and I really wish advocates and people like you would be more involved.

seahorse said...

Thanks doesn't really do justice to the thought and feeling that have gone into all of your comments.
I know somehow I have to sit in front of my GP and articulate all this. I think, mentally, I will take everyone here with me. It will make me feel a bit stronger. I don't know why, but I've answered these comments most recent first. Apologies if this upsets any etiquette of which I am unaware.

Kara: Yes, it's systemic both here and in the States. It's what happens when the medical model screws up, compounds itself, contradicts itself and in the end does far more harm than good. I have been encouraged at various points to accept more than one label from the DSM and thrown the whole lot back at them. I despise the DSM. And a therapists I know pointed out quite rightly "It doesn't matter what's in the DSM now, because you can bet that when it's revised, whatever they're trying to stick you with will be considered out of fashion, out of date, or at least in need of some sort of tweaking." For who's benefit? The medics. Because it's what they are taught at med school. It's all they know. I believe they are blinkered by their training, by what they choose to 'specialise' in, and having found a comfortable niche, none of them know how to talk to each other, let alone to patients. You may disagree. Please do. Let's get to work on this.

Cusp: I sympathise, and have the same worries about losing a handle on the delicate 'normality' I currently achieve with my son. But I think it could be so much better, only it will also be worse for a while. And I agree, the diagnosis does one no favours. As for how the hell things came to this, one drug followed another. Each thing they gave me made me worse in some way. It's important to point out that at the time I had lost all power to make decisions for myself, and was totally in 'their' hands. But rather than take me off things, they added stuff in to try and alleviate the overall symptoms as they worsened. They felt they had to 'treat' me.

Fluttertongue: Thank you. Resilience comes with practice. Propranolol is really not nice, is it? In my experience it robs you of any sensation. I was told by one GP "Well, you still just about have a pulse." Great. Your Nan, how really terrible for her, and for you. Antidepressants and children. Hmmm. Separate post. But yes, so many pills, so little time I think is how doctors think. There aren't the resources for other therapeutic interventions.

rachelcreative: Thank you. Yes I do feel it's all justified feeling. And yes, they have left me in what they see as a 'sort of ok' state. But it's not. A friend has suggested I need a doctor who can cope with a patient with too much insight. Very wise words. Most of them find such patients an irritation.

Talj and S. Thanks for reading and for being there for me. It's a two way street you know, even if the balance has temporarily shifted.

Donimo: Thank you for saying my blog is important to you. That is very touching. I don't set out for it to be important, but I do find that expressing myself with honesty and clarity (when I can) makes connections happen with others. I find that so amazing. Remember, I've been under a large stone for a good while now. It's so nice to make contact with people. Much of what I've been through is sadly, shared experience. But sharing it opens up debate and allows feeling to be expressed. So when I'm not busy hiding behind my camera, you may find me writing more. And I'd love there to be a great collective untangling of the f****d up fishing net we all got caught in.

The Goldfish said...

Ditto the sympathies of others.

I was going to leave a comment with a little advice, but it became a rambling post.

Anonymous said...

I find myself rather lost for advice, words of comfort or, indeed, any words at all. But I just wanted to register the fact that I'm reading, and that this is one of the most powerful things I've read in a long time.

seahorse said...

Goldfish: I'm going over to you in a mo.

Unreliable Witness: The power is pure anger. If I channel it properly then I think there may be some positive outcomes. Sometimes, in more paranoid moments, I wonder if I was deliberately drugged because I was one of those difficult, articulate patients. But no, they just don't think what they are doing to people and they don't have the time to care. This shouldn't have happened to me, or anyone, but it has. So now I have to turn it around, for my son, for myself and for the plans I have made for life on the other side of all this.

seahorse said...

Goldfish thank you for taking the time to put together such a comprehensive and really very practical guide. I do hope I'm not the only one to benefit, though of course I equally hope no one else out there is on the combo of crap I'm taking...
I think it's everything in combination that's proving the problem rather than each individual drug. And I really think my first port of call needs to be a consultant pharmacologist or general physician, to have my blood levels checked out, to work out how much of my theorising about my body is actually true. I want to know what is affecting me and how.

Elizabeth McClung said...

I am not sure what to say except that I think you are cool and exceptionally nice to post all this up so people can get an understanding - and that I hope you get the best resolution.

Ironically, I am on some of those drugs, but now in Canada, not the UK - I can't my hands on them because each new doctor decides to cold turkey me for a while to see what happens. Yeah. Actually Zopiclone should probably read: very addictive since in North America I don't think you are allowed for somone to have it for more than three weeks in a row. I'm not sure what it does exactly except put you to sleep but doctor get really really weird about zopiclone.

Hope things improve. (PS if you find a decent alternative to valium as a sleep aid, please let me know).

seahorse said...

Elizabeth: Thanks for your equally frank and open response. Sleep aids...boring photo archiving tonight. Will be trying such activities at some point without sleeping pill. I have thousands of pictures to edit and put in order. If it doesn't make me sleep, at least I will be occupied.

Mary said...

Yipes. I think the trickiest bit is going to be figuring out which one it is best to attempt to cut down first.

seahorse said...

Mary, yes it is a bit of a challenge. But I know in myself what is making me feel rough. I have a feeling that being less zonked by Zopiclone would possibly be a good start. And gradually the Valium has got to go. I find it horrible. But slowly does it. The last thing I want is to feel very, very ill for a very long time. I've been recommended syrup for the valium. You can use an oral syringe in tiny decreasing increments. A quarter of a milligram isn't that easy to split in tablet form.

Mary said...

I wonder if you could get additional support from the local drugs services?

S, the heroin addict downstairs, has all sorts of support coming out of her ears - a drop-in centre, a 24/7 phone number for specific "I'm in the process of coming off drugs" help, social workers visiting every couple of days... when she hits the methadone program (9 month waiting list for that, it is still the NHS after all) she'll get daily one-to-one in-person support as well. I can't for the life of me think why these concessions would apply for those experiencing problems with illegal drugs only.

Gone Fishing said...

I gave up on Majic miracle cures some years ago.

After more than a few excruitating and near death experiences from things which were meant to make me feel better.

They did not!

But made Doctors annoyed and frustrated at me because they did not work rite!

I have seen amuzing comments "not taking prescribed medication" (Steroids)

I have experienced Lipex induced pains, among others.

Now I am old death holds no fear and pill and potion free am amazed at how (even it seems at the most dire times) the human body seems to balance itself out or balance itself without chemical help or side effects from such.

Seems some pills help Ok at first but then just stretch and shift the end pain a bit further along and add a hell of a lot more misery in the long run, especially when one is presented with the bill at the Chemist.

Miss Vertigo said...

Hi there,

Found my way here via Post of the Week.

Firstly, thanks for your honesty.

Secondly: I have been where you are. Exactly where you are, with a few little differences in the prescription: Valium, Propranolol and narcotic painkillers.

Please don't go to rehab to get off this cocktail. At the very worst they'll yank you off them in far too short a time, possibly with a pheno detox, which is horrific.

If I'm not being too presumptuous, I'd like to recommend the help and guidance of the wonderful team at the forum on http://www.benzo.org.uk; they are hugely experienced in multi-drug withdrawal, and more importantly, *safe* multi-drug withdrawal, and have all been through it.

These people quite literally saved my life.

Wishing you luck and good health,


seahorse said...

MV: Thank you so much for shedding more light on benzo.org.uk, a really informative site. A few months back I was tentatively looking at their programme for withdrawing from Zopiclone then Valium, but chickened out. I agree they certainly know what they are talking about in terms of multi-drug withdrawal, and the trepidation that goes with it.
It's so good to hear that someone has been directly helped by them. I will definitely, definitely get over there and check it out further. Thank you.

Ol Nobby: I am heartened by your words. Perhaps my body will balance out one day. You really give me hope :) As for death, we've met a couple of times in passing. I'm not scared either, just not ready. Prescription charges...absolutely. Paying for the crap is just the ultimate slap in the face.

Mary: I started a response and it turned into a post. You raised a point I wanted to expand on.