What do you do when you can't tolerate antidepressants?

[Tussi]

Hello everyone,

First of all, sorry for cross-posting. I posted this on the AnxietyZone forum a while ago, but didn't really get any useful advice. I'm hoping here might be better.

I have suffered with panic disorder for roughly 14 years now, along with occasional episodes of generalised anxiety disorder and depression thrown in for good measure (the depression comes mostly after prolonged periods of anxiety, though, so it is more of a secondary problem). Prior to that, I was always a "worrier" as a child, so I guess I've probably always had a problem.

Up until the last year or so, my panic disorder was relatively controlled. I could get by so long as I avoided certain things (not good, I know, but it worked), and carried around benzos for use as needed, but now I have developed fully-fledged agoraphobia.

Last year was really bad. I got stuck in the house for a few weeks, and it took me a long time to be able to go out and do things again (like work or shopping), but I haven't improved much. I'm still stuck within roughly a 5 km radius of my house, and even within that radius there are places and situations that I can't be in for fear of getting stuck. (e.g., driving on certain roads, meetings at work, buying too many things at the supermarket).

I think I was able to manage up until now, because I could accept that the panic attacks weren't dangerous, just unpleasant. Well, since then, I've been diagnosed with a heart condition (SVT), and the panic attacks can (and have) triggered episodes of SVT. So now I'm desperate to avoid anything that could trigger a panic attack, because SVT is really not nice and pretty incapacitating when it happens. I have atrial tachycardia, too, so there's not really anything I can do to stop the episodes. I just have to wait it out.

The thing is, I just don't know what to do anymore. There's never ever been a period in my life where I've been totally free of anxiety, so I think I am one of those people who will probably always have to take some kind of medication. I'm ok with that, but I can't tolerate the medications that are usually prescribed for this sort of thing.

Antidepressants don't work and/or have intolerable side effects. Most make me hypomanic, within as little as a few days. The only one I could tolerate was mirtazapine (30 mg), and that was only if I also took quetiapine (an antipsychotic) at the same time. I was on that combination for 5 months or so, but it was horrible, so I came off both.

I have tried at least one antidepressant from the following classes: SSRI, SNRI, TCA, and NaSSA, so no one can say I haven't given them a good go. They are all way too activating for me, even at tiny doses. The only difference between them is the side effects. (This was all under the supervision of a psychiatrist by the way, so I've been doing the right thing, but I don't think even he knows what to do in my case).

I have also tried CBT. I really stuck with it (did it for well over a year), but it was like trying to put out a forest fire with a water pistol. Pretty much a waste of time.

Right now, I'm getting by (barely) with benzos. My GP (who I am too agoraphobic to actually go and see in person) has been prescribing me diazepam (10 mg per day in divided doses). I've been taking them for 3 or 4 months now, but it's not enough, and she doesn't want to give me a higher dose. I understand the issues of dependence and possible tolerance, but I think benzos may be my only hope. Over the years, I have used temazepam (prn), alprazolam (prn), oxazepam, and diazepam, and they've helped (with minimal side-effects). The cognitive side effects of diazepam are a bit of a pain (my short-term memory is pretty much gone, but I can live with that if it means no more anxiety).

I have also been experimenting with metoprolol (a cardio-selective beta blocker), which my cardiologist gave me for the heart problem. It does help with the anxiety, but I'm super sensitive to meds that lower my blood pressure and I don't think I can get it up to a therapeutic dose to block panic attacks. The most I have taken is 25 mg, which will drop my blood pressure down to around 95/70 and lower my resting heart rate to around 50. That's no big deal, but given that 25 mg has proved utterly useless at blocking the effects of a panic attack (my heart rate went right up to 160-180 during one), I am worried about going to a higher dose, since the effects on my blood pressure (and maybe heart rate) will probably be more pronounced.

So... I'm wondering, what can I do? Antidepressants are not an option. I am never going to take another antipsychotic again, and I'm not too keen on the idea of mood stablisers or anticonvulsants (assuming that the last two even work for panic at all -- the evidence seems pretty sketchy).

My GP has referred me back to my psychiatrist, but I'm not sure that he is going to know what to do either. Best case scenario is he tells my GP it's ok to prescribe a higher dose of benzos.

Does anyone here have any experience of being in a situation like this (i.e., where you can't take antidepressants), and/or does anyone have any experience of long-term benzo use?

Just how likely is tolerance? From what I've read in the scientific literature, some people become tolerant quickly, while others never seem to develop it. (Dependence is another matter, but I don't give a damn about that).

I could really use some advice, because I've just about reached the limit of what I can cope with. Although I'm in no immediate danger of ending my life, life does seem pretty pointless. Anxiety has ruined everything: my social life, my career, and I sometimes I really do wonder if I'd be better off dead. Agoraphobia makes me feel like I'm in prison, and it's all just so draining.

[Emphyrio]

I know exactly how you feel. For most of the last decade I was on fluoxetine which allowed me to return to uni, get a job etc. Then I started feeling a bit more anxious - attributed it to the medication, then jumped on the medication merry-go-round which has yet to settle down. I suspect that my increase in anxiety was related to alcohol use, so I've severely restricted my alcohol intake and crossing my fingers that my anxiety 'baseline' can be lowered.

I managed fine on 20mg of fluoxetine in the past, but when I went back on it my anxiety went through the roof.

I did find that just 5mg of citalopram stabilised the anxiety, but at the cost of visual problems and cognitive dysfunction. The visual problems have stuck around since I discontinued this medication over 4 months ago. What were the issues with the mirtazapine/quetiapine combo? And what dose of quetiapine were you on?

I'm not sure about benzos as I've only ever used them occasionally, so hopefully someone else will come along to chime in.

As for your options - you could ask your GP for pregabalin (Lyrica) which is an anticonvulsant drug licensed for the treatment of generalised anxiety disorder in the EU. It works in different ways to benzos but has the same anxiolytic effect - reducing levels of glutamate (an excitatory neurotransmitter) and norepinephrine. I've never taken it myself but people seem to have had a positive response to it - check out the sub-forum.

Other options - high dose inositol - works as well as antidepressants for depression, OCD and panic.

What kind of doses were you starting your antidepressants on out of interest? Liquid versions of most of the SSRIs are available and could allow you to titrate upwards very, very slowly. Like start on maybe 2mg of citalopram and increase from there.

Hope you find something!

[harasgenster]

You mention hypomanic states - are you diagnosed with bipolar or just one of the few that suffer hypomania as a side effect of anti-depressants?

If you're bipolar, I hear medication can be really good, but you say you haven't been on a mood stabiliser before. I used to be on Lamotrigine, which has very few side effects. However, I've heard that it protects against depressive/anxious mood more than hypomania (although it won't cause hypomania, like SSRIs can), so if hypomania is a problem perhaps it's not for you.

Benzo addiction is pretty bad, so I wouldn't even risk it. It's not just that you need the pills, it's that you get an increase in panic attacks etc, so that really doesn't sound like the kind of thing you want if you're having heart trouble.

Also, I don't want to sound dumb, but do you mean your blood pressure gets dangerously low (like not conscious, low), or do you just mean it gets low so you have to be careful standing up etc? Because perhaps that's the side effect you should choose out of them all? At least that one's not dangerous is what I was thinking, but I don't understand BP measurements, so perhaps it's lower than I think.

Other than that, why not give talking therapies another try. I assume you've told your GP that CBT was not helpful, and he hasn't referred you to a higher stage of therapy? I would want to know why not if I were you. CBT didn't do much to help me either (it helped a bit), but I got a more effective combination of therapies through the NHS and recovered.

Maybe ask your GP about the possibility of schema therapy or psychodynamic therapy?

[Tussi]

Thank you both for your comments.

What were the issues with the mirtazapine/quetiapine combo? And what dose of quetiapine were you on?

Mirtazapine was probably the most tolerable antidepressant out of all of those that I tried, but as I said, I could not take it without quetiapine. I hated the quetiapine (emotional numbness, apathy, etc), but every time I tried to reduce the dose I would experience increasing hypomania-type syptoms. Insomnia, absolutely bouncing off the walls with energy, sex drive going through the roof, finding myself going on spending sprees on e-Bay, etc. It was really unpleasant.

I was taking 30 mg of mirtazapine, and initially 200 mg of quetiapine. I managed to get the quetiapine down to about 50 mg per day (although I was also taking oxazepam, too), but it was like the two drugs were fighting a tug of war - mirtazapine trying to pull me up (to the point where going for a run at 11 pm at night seemed like a good idea), and quetiapine trying to pull me back down.

And in addition to the mood stuff, there were some other unpleasant side effects as well. Really bad restless legs at night (I basically had to wait for the quetiapine and oxazepam to knock me out), and it made me sleep walk quite a bit. (I'm prone to sleep walking anyway, but it happened *a lot* on mirtazapine).

As for your options - you could ask your GP for pregabalin (Lyrica) which is an anticonvulsant drug licensed for the treatment of generalised anxiety disorder in the EU. It works in different ways to benzos but has the same anxiolytic effect - reducing levels of glutamate (an excitatory neurotransmitter) and norepinephrine. I've never taken it myself but people seem to have had a positive response to it - check out the sub-forum.

I have been wondering about that, and I may give it a go, but I'm not convinced about its efficacy for panic. It seems to be more effective for GAD, and given its effects on GABA, I suspect it will share many of the problems with benzos. Certainly, the long-term effects are not known. I think it might be better to stick with the devil I know (benzos).

Other options - high dose inositol - works as well as antidepressants for depression, OCD and panic.

I have heard about that, too. I'll look into it.

What kind of doses were you starting your antidepressants on out of interest? Liquid versions of most of the SSRIs are available and could allow you to titrate upwards very, very slowly. Like start on maybe 2mg of citalopram and increase from there.

I started all of the drugs at the lowest doses possible (in tablet form). I don't think the liquid versions of SSRIs were available when I first tried that class. To be honest, I don't think it will help. All of the anti-depressants, with the exception of dothiepin (which made me horribly anxious -- much more than I already was) push me into a hypomanic-like state, and quickly. A single 37.5 mg dose of venlafaxine was like taking speed - I didn't sleep for 24 hours. Even the ones that are supposed to be sedating (like amitryptyline) aren't.

My worst experience was with paroxetine. Nothing much happened for the first week - I just felt really out of it. Then I started to get these rapid mood swings. One minute I was absolutely euphoric. An hour later, suicidal. It was awful.

You mention hypomanic states - are you diagnosed with bipolar or just one of the few that suffer hypomania as a side effect of anti-depressants?

I have never been diagnosed with bipolar, and I have seen a psychiatrist on and off for several years about this. We've never discussed it, so I assume he thinks that I don't have it. I don't think I have any evidence of bipolar when I'm not taking antidepressants, although I do seem to get negative mood swings on a semi-regular basis. I have been meaning to discuss this with my psychiatrist next time I see him, as I wonder why I'm so intolerant to these medications.

Also, I don't want to sound dumb, but do you mean your blood pressure gets dangerously low (like not conscious, low), or do you just mean it gets low so you have to be careful standing up etc? Because perhaps that's the side effect you should choose out of them all? At least that one's not dangerous is what I was thinking, but I don't understand BP measurements, so perhaps it's lower than I think.

It only gets low to the point where I get dizzy standing up. But as I said, I'm not taking a therapeutic dose of metoprolol, and I am concerned that higher doses may be dangerous if my blood pressure continues to drop. You really don't want your systolic blood pressure going much below 90. (Normal is around 120).

Other than that, why not give talking therapies another try. I assume you've told your GP that CBT was not helpful, and he hasn't referred you to a higher stage of therapy? I would want to know why not if I were you. CBT didn't do much to help me either (it helped a bit), but I got a more effective combination of therapies through the NHS and recovered.

Maybe ask your GP about the possibility of schema therapy or psychodynamic therapy?

While I won't rule these out, and perhaps I should give them a go, I'm doubtful. I think I have a physiological problem, and no amount of therapy is going to help. My father had anxiety, my sister has anxiety, and I have anxiety. I also have some other health problems that suggest an unusual sensitivity to stress hormones, specifically adrenaline and noradrenaline. Even tiny amounts get my heart really fired up. (e.g., ectopic beats, tachycardia, and if the adrenaline is sustained for long enough, SVT).

[Emphyrio]

Do you drink caffeine? What is your alcohol intake like? It may help to reduce or remove these as they can contribute to anxiety and panic. I seem to have a hypersensitive nervous system meaning that I've had to really limit the amounts I can take, which I attribute to long periods of stress coupled with excessive alcohol intake.

Have you had blood tests for things like iron, thyroid, B12 or ferritin levels?

Omega 3 is another supplement that appears beneficial for things like anxiety. You do need to take several grammes a day though to truly experience the benefits. A tin of mackeral contains around 4.3 grammes of omega 3, so you could get it from natural sources if you don't want to take the capsules.

[Tussi]

Do you drink caffeine? What is your alcohol intake like? It may help to reduce or remove these as they can contribute to anxiety and panic. I seem to have a hypersensitive nervous system meaning that I've had to really limit the amounts I can take, which I attribute to long periods of stress coupled with excessive alcohol intake.

Have you had blood tests for things like iron, thyroid, B12 or ferritin levels?

Omega 3 is another supplement that appears beneficial for things like anxiety. You do need to take several grammes a day though to truly experience the benefits. A tin of mackeral contains around 4.3 grammes of omega 3, so you could get it from natural sources if you don't want to take the capsules.

No, I don't drink (or eat) anything containing caffeine or other stimulants. I don't drink either, although I used to drink heavily in the past to cope with anxiety (since I couldn't tolerate antidepressants, and that was before I discovered benzos).

All my blood tests are normal, including the things you mention.

I do eat quite a bit of fish. I have found that helps my heart a lot (less ectopics, less SVT).

[MrAndy]

Olanzapine is a better alternative to quetiapine and works well in low doses it can also be taken alongside an ssri

[hanshan]

Hi Tussi.

You can try pregabalin for generalised anxiety. It's not an AD or benzodiazepine, but has a different mode of action. Your GP probably has a few free starter packs hidden away in a drawer somewhere.

Unfortunately, if it works, from your flag you're in Aus, which means pregabalin is not PBS approved for anxiety (like the US, but not the UK, where it is approved for generalised anxiety). This means a maximum dose of 600 mg per day will cost about five dollars per day on a non-PBS prescription, which any GP can write. For me, well worth it - people pay more for a coffee and banana cake.

Anyway, if ADs don't work, it's worth a try.

[SarahH]

Pregabalin

[Tussi]

Hello again everyone.

It's been a while since I've been on here, and my anxiety isn't any better. I did ask my GP for pregabalin, and did a short trial, but I couldn't tolerate that either.

I lasted just over two weeks reaching only 75 mg per day. I felt really confused all the time (to the point where I couldn't even do my usual work from home), and I had bad muscle pain all the time on it.

I'm still taking 15 mg diazepam daily, along with 50 mg metoprolol, but it's not really helping.

My agoraphobia is now worse than ever and I'm losing hope that things will ever change. I feel really depressed.

Does anyone have any other ideas for medications? I feel like I'm out of options.