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Getting worked up about coming off cocktail of med's after PND - calm me down please! (getdownyouwillfall - are you around)?

(7 Posts)
dontrunwithscissors Tue 31-May-11 11:21:39

I had nasty PND after DD2, and spent 6 weeks in a mother and baby unit. I'm finally stable on 100mg lamotrigine, 20mg citalopram, 150mg quetiapine IR and 50mg quetiapine XR. I'm getting fed up of taking so many tablets.

My CPN thinks that I should be able to reduce what I take by focussing on lamotrigine, which is what's really made the difference. She also thinks that, in time, I should be able to come off medication completely.

I've started reducing my quetiapine IR very slowly, with the support of my CPN, but she doesn't think I can go too far without seeing my pdoc to figure out how to do this. Unfortunately, I can't get an appointment until mid August (and I don't know whether I'll be able to make it.)

Now.....I'm getting so impatient about reducing/getting off med's. I know it's daft to mess around with them without advice, BUT I'm getting ridiculously worked up. I don't know why. I'm only just in a position where I feel well so why on earth would I want to risk that? Could someone please knock some sense in to me, and get me to accept that this is going to take some time, and isn't going to happen in the next few months? I'm a bit worried that, if I don't chill out about this, I might just end up saying screw it all and mess around with the med's and mess everything up. It would help to hear from others who've been through something similar, and how long you were stable before you started reducing meds.

(getdownyouwillfall: I 'called' for you as I think my situation has been quite similar to yours. Last time I read one of your posts, you were slowly coming off your meds. How long did it take before you started doing that?)

GetDownYouWillFall Tue 31-May-11 14:41:52

Hiya dontrun. Really pleased to hear you are now stable. And you're right, it is a scary, frustrating process to finally get off all your psychiatric medication. There are so many fears about "what if it all happens again?". But I totally understand the drive to get off the drugs, something a lot of psychiatrists don't seem to "get". Mine would constantly ask me "why does it matter if you are on these for the rest of your life??" Well, it DID matter to me, it mattered A LOT. They don't seem to understand that you need to know what is the real "you" again, and that you can function as a "normal" person without this horrible vague backround doubt that what's really "you" is actually what the drugs are making you into. Don't know if that makes sense?

Anyway, I was not prepared to accept that I would be on medication for the rest of my life. And I think that was the main starting point. Do NOT accept that you HAVE to take this stuff forever. If I believed them, I never would have had the willpower to get off everything. When you have a wobble, it's so easy to doubt yourself and think that you will never get there and that you are a permanent mental health case.

There are some mental illnesses that are long term, and yes in some cases, it is right that a person remains on their medication indefinitely. But I don't think this has to be the case in PND. PND is post natal i.e. an illness in the mother related to the birth of a baby. It is time-limited by its very definition. You don't have to be ill forever just because you suffered from PND, however severe it was.

Mine, like yours, was pretty severe. I was in a MBU for nearly 3 months. At one point I was on 11 different psychiatric medications, some of them at max dose. I took olanzapine at max dose for a while, as well as lithium, zopiclone and a variety of ADs. I had to take procyclidine to control the side effects of the olanzapine. I started to feel very out of control, not knowing what sensations were caused by my illness and which were caused by the cocktail of drugs I was on.

When you get in such a state you get desperate and I was willing to try anything. I made the mistake of throwing everything at trying to get better and I stupidly tried too many things at once - CBT, homeopathy, reflexology, massage etc. on top of all the drugs. I spent a silly amount of money seeing a private psychiatrist on Harley Street. And was left feeling horribly confused and stressed out, with all the advice. I had to cut everything out and re-discover the "real" me. And I couldn't do that whilst I was on all these drugs, I didn't know who I was anymore.

Getting off the drugs is a s...l....o....w..... process. You have to forgive yourself and start to accept that there will be ups and downs. Don't blame yourself or beat yourself up when you have a blip (yes, "when" not "if" because they will happen unfortunately). But keep telling yourself you WILL get there, no matter how long it takes. You definitely will get there in the end.

Start with one drug at a time, never try to come off more than one drug at once. Start with the one you feel you need the least or the one that seemed to make the least difference. So in your case, you need to leave the lamotrigine till last. In my case, I had to leave the mirtazapine till last. I started with the olanzapine, because I hated the weight gain it caused and the general doped-up feeling. It's hard to know at first what are withdrawal effects and what is just the fear in your mind of going downhill. I started to get anxiety really badly when I started to reduce my dose but I think a large part of it was just fear of going downhill, rather than my body missing the drug. I cut my pills into tiny fragments, and kept them in a box with vitamin pills. This sounds crazy but I kind of cross-tapered onto the vitamin pills, somehow fooling my body into thinking it was still taking the drugs. Also somehow keeping them in the same container made the vitamin pill seem more than it was IYSWIM?

I had lots of blips. My psychiatrist on more than one occasion suggested upping my dose of ADs to higher than I even started on. It felt like such a defeat. But I kept on with my schedule of chipping away at my pills. I would say it probably took about 18 months to get off everything. I finally stopped my last pill completely in Dec 2010. I haven't taken anything since, and have (pretty much) been well since.

I am now pregnant again, which is very scary. But I'm also excited. At one point I never thought I would recover from PND, let alone be in a position to go on to have another baby.... yet here I am! And having done this pregnancy drug-free so far, I feel so happy that this baby hasn't had any drugs swirling round its system. Watch this space to see how I cope after the birth!! Am being seen by the perinatal psychiatrist every month and so far everything is going well.

I really do wish you well on your journey of recovery, please keep posting and let us know how you get on.

P.s. thank you to madmouse who pointed this thread out to me!

madmouse Tue 31-May-11 14:51:13

well getdown it was obviously worth messaging you grin

dontrun take your time - you've come very far already, you can carry on a bit longer x

natsyloo Tue 31-May-11 22:28:13

Hi there - just wanted to say I too am reducing my AD dose after a nasty bout of PND.

It's really reassuring to hear that a complete recovery is possible (touch wood I am almost there and feel so so much better after 10 months). I guess gradual is the way forward.

I also wanted to say congrats getdown, how lovely that you're pregnant again. I used to feel physically sick at the thought of another baba when I was in the heart of the storm that is PND but am now coming round to the idea so it's so nice to hear from someone who has come on such an incredible journey. Good luck with your pregnancy x

dontrunwithscissors Wed 01-Jun-11 11:20:54

Thank you very much GDYWF for taking the time to reply (and madmouse for pointing this out.) Congratulations on your pregnancy - when are you due? Like natsyloo, it's very encouraging to know someone else has managed to do this.

I tried reducing my quetipaine down a bit ago, but anxiety hit me after 5 days so I put it back up (and felt very downhearted as a result). Thinking about it, it was quite possibly me getting worked up about it. I stopped taking the quetiapine XR last night. You can't cut it up, and there's no smaller dose so I just had to stop. However, I've increased the normal quetipaine to compensate, and I'll then slowly reduce it back down. I guess sometimes you have to go backwards to go forwards. It's good to eliminate one of the tablets. The various medications have to be taken at different times of the day so I have to stop and think about them 4 times daily. This will reduce it to 3 smile.

How long were you well (stable) for before you started reducing your meds? It's only been a few months for me. I'm not bothered about coming off everything at this point in time - I'm happy to just reduce the number of med's. I'll take on board your and madmouse's advice that I have to take this as a long term process. (I'm not the most patient person in the world!)

GetDownYouWillFall Wed 01-Jun-11 14:04:09

Let's see, I got ill in Jan 08. I was admitted to MBU in March 08. Came off olanzapine completely in Dec 09, came off lithium in May 2010, came off my AD in Dec 2010. So as you can see, it was a SLOW process! I was probably stable for a good 18 months before I started trying to reduce anything. Sorry, that is probably not what you wanted to hear, but this really can't be rushed!

I would be really patient with yourself, enjoy a period of stability, whilst telling yourself you will not be taking all this stuff forever. I would stick with the regular quetiapine for a bit longer if I were you. You're so right, that sometimes you have to take a few steps backwards in order to go forwards.

Thanks for your congrats natsyloo! Yes it is totally possible to recover from PND. I am so happy being a mummy now. I think basically I don't "do" the baby stage very well, but really enjoy it once they can talk / interact IYSWIM. Hoping I get through the baby stage ok with DC number 2!

dontrunwithscissors Wed 01-Jun-11 17:05:03

Thanks, GDYWL. It's helpful to see the time-line. I'll be reasonably happy for a while if I can get away with stopping the quetiapine XL. I'm feeling fine today, fingers crossed. Good luck with DC2!

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