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Singulair - what would happen if I went crazy on it?

drjlm profile image
18 Replies

Hi!

I took Singulair in the past for allergic asthma. I remember finding the medication beneficial as an add-on therapy.

My doctor has suggested that I go on it again because I have a symptom (a kind of uncomfortable tightness around my throat) that she reckons is allergy-related, particularly as I have asthma.

However -- reading all the horrible things on the internet about people having suicidal ideation as a result of taking Singulair has really freaked me out.

To give me the reassurance to at least give it a try, I figured I would try asking the following here:

What happens if, in the worst case scenario, you have a severe adverse psychiatric reaction to the drug -- like you begin having suicidal thoughts or feel psychotic?

Can you go to to an A&E room and ask to be "sectioned"?

I briefly suffered from panic attacks in the past (which passed after a stressful period in my life was over and which I managed with a very occasional prescribed Xanax), but have had no other interactions with mental health treatment facilities - specifically in an emergency settings. And I've never had any suicidal ideation or depression.

Any advice would be appreciated. I feel like it would be a pity not to give Singulair a try again because I'm too scared!

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18 Replies
Shellc profile image
Shellc

U could ask to try phyllocontin instead , I prefer this to singular , pretty sure it acts in the same way

drjlm profile image
drjlm in reply toShellc

Looks like that's a xanthine class bronchodilator (theophylline, etc). Different type of medicine! (But thanks!)

EmmaF91 profile image
EmmaF91Community Ambassador

Singulair is montelukast whilst phyllocontin is aminophylline... completely different mechanisms!

Given the choice I’d take the montelukast as there’s a lot less hassle with it (no blood tests, no caffeine/alcohol avoidance, no chance of toxicity). Aminophylline tends to be a later option drug and is more broad spectrum, whilst montelukast is more for allergic asthma.

If you’ve had it before and not had any issues then it’s worth a try. A lot of people are on it with no problems, the internet/forums usually only focus on those with bad experiences (and like with almost all drugs the worst possible side effect are scary but they are usually relatively rare).

When I was on it I had lucid dreams... whatever I watched before bed I the repeated in my dream and I new exactly what was happening... it was very bizarre but I got used to it (no game of thrones before bed 😂). I stopped because it just didn’t seem to help me anymore and I wanted to cut down my drug list.

Worst case scenario, stop the drug immediately and let the GP know ASAP. If you’re feeling psychotic or suicidal you can go to a&e if that’s where you think you need to be... you can ask to be sectioned however with funding as it is they may not, and may watch you in a&e then release you when you’re feeling better or have someone to stay with...

If it helps I very occasionally get suicidal ideation (usually from long term high dose pred) but reminding myself it’s from the drugs stops it going further... if it’s bad I go sit with company (friends/family) - I don’t explain what’s going on but the company makes me feel better and distracts me for want of a better word, until it’s passed. I’d rather put up with the ‘low’ then not breathe with is the only other option! It happens so rarely, and I’m on so many other drugs, I don’t take anything for it and it’s usually something I can ‘shake’ in a few hours.

Give the singulair a go, if it works with no issues then brilliant, if there’s a problem, stop, get safe and let your GP know (but at least you can say that you tried!)

Hope that helps

drjlm profile image
drjlm in reply toEmmaF91

Thanks so much, Emma (taking a guess that's your name)!

I had no idea that xanthine-based drugs were still even being used. I remember reading that the side-effect problem was similar to coffee, which obviously sounds very undesirable (particularly as I've been guilty myself of trying to use strong coffee as a medicine for asthma on may occasions!).

Asking to be "sectioned" was maybe a little dramatic ... but it looks like you got my point. I was just concerned about what would happen in a worst case psychiatric breakdown. Like where you'd go, who would see you, etc. Thought that if I asked my GP that I might get strange looks.

I guess I still wonder why there are those sad suicide cases that are obviously "successful". Perhaps those people weren't even aware of the potential for suicidal ideation and thus they/their parents weren't as "on guard" as we might be:

dailymail.co.uk/news/articl...

Thanks for the tips. If I feel like I'm having some kind of reaction, I guess I'll know now to stop taking the medication, be monitored by a friend/family member, and instruct them to bring me to A&E if stuff really turns bad.

EmmaF91 profile image
EmmaF91Community Ambassador in reply todrjlm

You’re welcome!

Yes the theophylline is still an option, but usually only when they really can’t get control... it’s the option usually before maintenance pred and/or biologicals. I’ve been toxic on it before and it was really not nice!

Bit dramatic, but if it’s a worry then it’s something you have to ask 😜! As you know it can be a side effect you’re less likely to get to that point because you can take a step back from the situation. You should be able to ‘get through’ the moment with friends/family, stop the drug and see the GP the next day and explain what went on.

Unfortunately, it usually is teens who are ‘successful’ however they don’t tend to read/think about it being a side effect and puberty is difficult even with the drug, so their brains just don’t know how to cope 😞. Plus their teens so very few actually discuss their feelings with their parents who may/may not know the side effects themselves and make the connection. Teens also seem to be more likely to get the mental health side effects on montelukast compared to adults (anxiety etc too).

Look after yourself x

Wheezycat profile image
Wheezycat in reply toEmmaF91

A brief sidetrack: Our daughter was diagnosed with asthma at age 5. With hindsight I think it had been there for a while - when she coughed I didn’t immediately rush to the doctors as I didn’t want her to end up on loads of antibiotics etc. By age six we were with a specialist, and at that point she had a barrel chest (couldn’t fully breathe out - we had noticed her ‘different’ shape, but had not realised what it was. It went with medication.) A major factor with her was coughing at night. The specialist prescribed theophylline tablet (it may have been uniphylline) to help her through the night. This was in the eighties and treatment regimes were different then. I remember the theophylline capsules were huge and I worried how a six year old was going to get them down. She did it without a blink. And her asthma was so much better on it. The good effect lasted I seem to remember a couple of years, or maybe more, after that they gave her a spinhaler instead, can’t remember the drug in that. But I find it interesting they gave theophylline to small children (and it worked) and now there is so much caution about it. No doubt more has been realised about it.

EmmaF91 profile image
EmmaF91Community Ambassador in reply toWheezycat

I think it’s more that there are so many more options out there on the market now. Theophylline is known to work but it’s a hassle for both patient and doctor to get the right levels, whereas the inhalers are easy, don’t require BTs and you’re less likely to unexpectedly get severe side effects.

The uniphyllin tablets now are quite small (thicker than a grain of rice but same sort of size), but other theophylline derivatives will be different (slo-phyllin is slightly larger than a cold and flu capsule, not sure about the others).

Wheezycat profile image
Wheezycat in reply toEmmaF91

Ah, the one that our daughter was given was like a horse capsule (not that I know what they might look like). It was huge! But it worked. Luckily she was better taking tablets and capsules than liquid medication that they normally insisted on giving children in those days. As you say there are now so many more choices.

drjlm profile image
drjlm in reply toWheezycat

It's amazing how relatively recently theophylline was still a first-line treatment for asthma (would have guessed more like the 50s than the 80s). Shows how far treatment has come in a short time - and of course gives hope for what might be in the drug pipeline. So I guess nowadays it's after steroids and leukotriene antagonists, so third line at least.

SueKropf profile image
SueKropf in reply toEmmaF91

Excellent response. I agree totally :-)

Yatzy profile image
Yatzy

Bear in mind that there’s a ‘run in’ time for montelukast/singulair. I had uncomfortably vivid dreams when first on it. Also felt it was doing no good. But I happened to be part of a pharmacy trial and was phoned every fortnight to check my progress. This encouraged me to continue....also I was desperate for SOMETHING to work, so willing to stick with it for a couple of boxes.

Gradually the dreams and the feelings of being mad at night settled to nothing.

I also found I was not reacting so rapidly to my sensitivity to perfumes/smells. They’re still a problem to me, but reliever inhaler keeps asthma at lower level longer and I tend to get a headache, not full blown exacerbation so soon. These symptoms help me to identify problems and resolve them, extricate myself somehow, in fact gives me time and less fear as i feel an asthma attack looming. I’m a much happier bunny due to better asthma management now...,wouldn’t be without montelukast now. Really glad I pushed on with it.

drjlm profile image
drjlm in reply toYatzy

Thanks for all these encouraging stories! It seems obvious to me that, particularly with Singulair, the abundance of horror stories online have created a very distorted picture of how many asthmatics actually fare with the drug.

I have bipolar disorder with psychosis and have no problem with singulair, it is steroids that cause me problems with mood if you had a reaction you would likely just need to come off it, I'd be surprised if you need hospital-you could discuss a plan with your GP perhaps? All the best to you.

Smoggy1990Boggy profile image
Smoggy1990Boggy

I found that Singular transformed my life when put on it. Having that as an add on medication allowed me to sleep for the first time in months. I dream a lot on it and can’t think of any adverse side effects so would always want to stay on it.

elanaoali profile image
elanaoali

I think you need to step back from the internet and Doctor Google. I know a suggestion of a new medication could worry you. If you have had panic attacks in the pass then could there be worse to come.

Go back to your doctor and lay out your concerns. Don't think your being silly it's better to get them out of the open then let things go around in your head.

God bless.

Joan_Public profile image
Joan_Public

I had a bad reaction to Singulair. Terrible, awful, horrific nightmares and feelings of suicidal despair. I do have severe mental health problems as well as severe asthma and have had psychotic responses to Pred. I told the GP how I was feeling and stopped taking Singulair. I would advise going to GP and hanging on for an appointment rather than A&E for psychological emergency, but if there were no other option, then best go there. Its taken years to find tbe right combination of medication and lots of trial and error of which Singulair was just a part. I still have side effects from what I currently take, but, as has already been said, being able to breath is the trade off!! There are more treatments available and being developed all the time and I hope you can find what works for you

andyk1 profile image
andyk1

I took Singulair and it was like looking into space - bright stars and an expanse of black. Made for some interesting nights though. Told my asthma nurse and she said it was best to stop taking them.

EdinburghGael profile image
EdinburghGael

My brother worked for Merck in the US at the time and had life long asthma with loads of inhalers. Singulair worked and carries on working for him really well - doesn't need any other medication. I think he said it works really well for 20% of people but that wasn't published?

I delevloped asthma around menopause. Had to go round the houses in the UK to get to try Singulair. And it works very well for me. My GPs still would like to take inhalers so I just said yes and don't use them or renew them. Also works for other family members.

We all seem to have allergic asthma. Only time I need to use Ventolin is in heavy pollution.

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