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Pregnant, coming off nortriptyline and feel dreadful

(13 Posts)
spiderlight Wed 07-Nov-12 10:21:15

I've been taking 100mg nortriptyline every night for about four years for migraine, migraine-associated vertigo and severe anxiety. I had the shock of my life on Sunday when I found out I was pregnant and am now having to come off the nortriptyline. I went to see my fantastic GP yesterday but she was full and I had to see a locum, who was lovely but terribly vague, gave me 10mg tablets instead of my usual 25s and just said to withdraw at a rate I could cope with and that he couldn't give me any advice on how fast to reduce the dose because 'everyone is different'. I'm scared stiff of harming the baby though - am about 7 weeks and everything I've read says this is the worst time to be on them. I would never have TTC while taking them and we were being very careful, so it's all a massive shock. I di desperately want the baby though.

I'd been taking 4 x 25mg tablets a night. On Sunday and Monday nights I took 3 1/2 and didn't feel too bad, but last night I took three and I feel awful today. I barely made it home from the school run - everything fely horribly unreal and I was clinging to walls and feeling as if I was going to pass out. I don't know whether I've dropped the dose too fast. Should I take one of the 10mg tablets to see if that helps? I'm going to ask a friend to pick my son up from school later but I'll have to take him in in the morning and I can't function like this. I've battled agoraphobia for years and this is bringing it all flooding back sad

Sorry - am just very hormonal and weepy and need a bit of handholding, I think. Has anyone else been through this?

spiderlight Thu 08-Nov-12 08:43:51

Nobody? OK sad

Millie2013 Thu 08-Nov-12 10:27:42

:holdshand:

You need to go back to the GP (or another GP and ask for some advice on how best to titrate the dose down as it wasn't very fair for the GP to leave you to it IMO. Off record, the one good point about nortriptyline is that is is an older drug and has been around for some time, therefore has a fairly well established safety record during pregnancy (official guidelines are to do a risk assessment and consider health of mother vs potential harm to foetus, but this is mostly because drug companies and prescribers are so, so reluctant to label anything as "ok" during pregnancy!!).
IF it had well documented adverse effects on the foetus, it would be an absolute nono for anyone with the potential to get pregnant. I think what I am trying to say is please don't beat yourself up for having exposed baby to the drug thus far and that you need to think of your own wellbeing as well as your baby's right now and this is not something you can decide on your own, especially when you are feeling vulnerable. So please go back to your GP, or at the very least, try to get a telephone consultation today and go from there

Big hugs (still holding your hand) xx

spiderlight Thu 08-Nov-12 13:45:50

Thank you, Millie. I'll try to speak to the main GP at my practice. Still feeling pretty grim today but DH has taken the day off work to do the school runs and I'll hopefully be in a slightly better state by tomorrow. I'm torn between wanting to get off them fast for the baby's safety and needing to be able to function for my five-year-old's sake.

<hanging onto your hand for grim death!!>

CaffeineDeficit Thu 08-Nov-12 13:56:27

Could you switch to amitriptilene instead of coming off the meds altogether? It's got one of the best safety records for pregnancy - as Millie says, one of the good things about tricyclic antidepressants is that they've been around for long enough that the docs are more sure that there aren't serious side effects.

FWIW, although I know one anecdote isn't the same as proper medical data, I took amitriptilene throughout my pregnancy with DS, and he's not suffered any ill effects (and he's now 2.6)

You might want to think about asking your GP for a referral to your local perinatal psychiatry team. They'll be a lot more clued up about what the risks/benefits are of various medication options in pregnancy

Millie2013 Thu 08-Nov-12 15:01:49

Nortryptyline is the main metabolite of amitriptyline, ie it's what the liver converts amitriptyline to, so essentially, it's the same compound, just chemically a bit different. The metabolites of antidepressants may be associated with fewer adverse effects and sometimes a better response than the parent compounds in some people.

CaffeineDeficit, what dose did you take? (if you don't mind sharing). I have done quite a lot of work on TCAs and SSRIs and anecdotal evidence is always good to hear smile

Echo the suggestion for a referral to the perinatal psych team, especially if you are struggling

Please keep us updated xx

spiderlight Thu 08-Nov-12 15:28:36

This has reminded me that I saw the perinatal psychiatrist once last time around - ironically because my midwife didn't want me to come off nortriptyline (was only on 25mg then though as I'd only started it the previous month) - and she was lovely and very very reassuring, and was the first person to actually take me seriously. When I speak to my GP I'll see if she can refer me for even a telephone chat with her. Until then I'll stay on 80mg tonight and then try the 75mg again over the weekend when I've not got the pressure of school runs hanging over me. They're scary enough at the best of times! Kicking myself for not POAS a few days earlier - at least then I'd have had half term to get through the worst of it!

Thank you both. I've been feeling so alone with it. I don't quite know how much of this is the effect of the reducing dose, how much is migraine (because I've also had to stop taking my lovely lovely Imigran), how much is shock at being pregnant at all and how much is normal first-trimester crappiness.

orangeandlemons Fri 09-Nov-12 09:28:50

I was told(about 7 yers ago) by a peri natal pyschiatrist, that the safestdrugs to take in pregnanacywere amitriptyline, nortriptyline and prozac.

I took amitriptyline all pregnancyad dd is now 6 and absolutely fine.

hth

spiderlight Fri 09-Nov-12 14:15:41

Thank you orangeandlemons. I'm glad your DD is fine.

Keeled over on the school run. Fab GP can't see me until 4th December. Got to ring surgery back at 4 for blood test results - I have ulcerative colitis and I'm hoping (!) that they'll say I'm anaemic because that would explain why I feel quite so bad.

spiderlight Sun 11-Nov-12 10:54:24

And now DS has given me a stinking cold! Perfect! (On the plus side he'll probably be off school tomorrow so that's one less scary school run to worry about...)

Solitaire14 Thu 22-Nov-12 07:19:38

Hi Spiderlight

Hope you are going OK. I saw your dilemma and want to urge you to get advice from a psychiatrist or a different GP.

I am planning my second pregnancy and my psychiatrist specifically put me on nortriptyline since it is one that is safe to take during pregnancy. I also take 100mg each night.

From my understanding, and general medical knowledge as I do a lot of reading, you don't have to come off the antidepressant and it could actually make things worse if you do. Apparently there are also potential effects to the fetus if you have uncontrolled depression etc.

Good luck with it. Unfortunately I have to come off it myself though as it seems to be interfering with my epilepsy medication.

Solitaire14

kt01 Mon 23-Nov-15 19:08:52

Hi there I'm new to this site & am prescribed 20mg of nortrypyiline a night for nerve pain has anyone been on this dosage all throughout your pregnancy & did any of the babies have withdrawal symptoms I understand that this is one of the safest medications & without these I would be in tremendous pain from pinched nerves in my neck. I would love another baby & im slready 33 in two weeks time I'm just scared that the child would be ill any input would be great thanks guys 😊

Justsayyeth Thu 04-Aug-16 01:09:11

I found your story while looking for alternatives for Nortriptyline. At age 14 I had such horrible chronic migraines that were so out of control that I would land in the ER on a daily basis. They were crippling and Nortriptyline was my miracle drug that gave me my life back. I have been taking it ever since. (I take 175 mg every day)

Now I'm 34 years old and after 20 years of being on it, honestly it terrifies me to not take it. I'm not pregnant and I have no children of my own yet, but I decided to lower my dose to 125mg about 2 months ago to try and prepare myself for when I do get pregnant. And I gotta say, it's sucked. sad My migraines have gotten worse and I don't know how I'm gonna cope when I HAVE. To do it. The thought of going without literally keeps me up at night.

Now, I had discussed this with my neurologist and my OB, both of which said I would be Okay to stay on it. But I have come across quite a few studies that day that there's a link between antidepressants and autism. They all have some scary statistics, which is why I've been trying to lower the dose. This is the first time I've ever come across other women who take it. It's made me hopeful that I could do it, or find an alternative to it. Cause without it, my quality of life changes drasticly.

Thank you so much for sharing, I have appreciated reading this thread so much, it's been an answer to some prayers. smile

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