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Terry
7th September 2013, 17:44
Hi all;
I have been prescribed Citalopram, an antidepressant that curbs my extreme emotional out bursts. I have taken 1 tablet for 5 days and then stopped.
In my experience it does seem to work and quite quickly and the effect did last for a couple of days after I stopped taking them. A doctor at Papworth said that they work quite quickly with emotions John said in another thread that they seemed to work for his wife emotions.
I stopped taking them because they seemed to increase my fasciculation’s and decrease my strength. Carol also mentioned the same problems with taking these types of drugs.
Has anyone else any experience of this.
Regards Terry

roy
7th September 2013, 20:31
Hi Terry,

Been taking 2 a day for a year,more recently 4 a day for me does repress my emotions,I have tried without and become
a wreck.they initially took 2 to 3 weeks to settle in my system.the side effects I have is a constant thirst and a dry mouth,
but overall enables me to cope and no longer get overwhelmed with negative thoughts.

Roy.

pete
7th September 2013, 22:29
Hi both,

Just wanted to ask you guys ,what are these outbursts caused by ,sorry if this sounds odd, but I don't seem to suffer from those, well not that I have noticed, I do tend to get frustrated when I can't make my self understood by others ,but that's always put down to the lack of speech ability and as i don't always have the iPad to hand when someone asks me a question . I was prescribed Citalopram a few years prior to being MND diagnosed for what was diagnosed as stress related to work, and to be honest ,I can't say they helped me in any way,so stopped taking them .

magic
7th September 2013, 22:40
Peter takes 30mg a day and I, the carer, take 20 . For Peter it has helped reduce his fatigue marginally. I find that it softens the impact of negative thoughts and helps me focus on the now rather than worry about the tomorrows. Glad that it ISP there. You do need to take it for a few months oases the impact.
Maic

roy
7th September 2013, 22:41
Hi Pete,

For me thoughts of loved ones,missing my life that I had,the future of my days but not death.When I have to talk
about my situation of feelings can be emotional.When I take the meds it helps control them.

Lilylou
7th September 2013, 23:32
Evening everyone

My husband Robert has become easily emotional since being diagnosed with pls 8. Years ago. If he gets very angry he cries and when his father died a couple of years ago he dreaded going to the funeral because he knew that he would not be able to control his emotions. (When he does cry it does not sound like a normal cry it's very loud and sometimes high pitched) he also laughs uncontrollably as well which actually is great because we both get the. Giggles and sometimes we are not sure what we are laughing at. But he says recently he finds himself wanting to laugh forno apparent reason. For example sitting in the dentist waiting room he said he was grinning for no reason and had to try hard to think of something serious to stop himself from laughing !
L
When we asked his consultant about this some time ago he said it was to do with the front part of the brain and was just another symptom of MND. At the moment he does not take any medication for this.

He has asked me to ask if anyone else get fits of the giggles!!!
Lyn lilylou

pete
7th September 2013, 23:54
Hi Magic, Roy,

Thanks for replying, I didn't mean to be insensitive , I can fully understand the reasons and feel certain that most of us feel much the same to some degree ,it's very much down to how we all come to terms with what lays ahead, this may sound silly ,but until now I never valued days as much as I do now , I tend to set goals to achieve daily, some I manage,some not, but the ones I do manage mean that much more now.

pete
7th September 2013, 23:59
Hi Lilylou,

Yes without doubt ,and mainly in places where it isn't appropriate , I tend to try to stop it but that only makes it worse ,so yes Tell Robert he isn't alone with that one .

Pete

Lilylou
8th September 2013, 00:28
Hi Peter

Thx for the reply will pass the message onto Robert I know it will make him feel better

Lyn lilylou

Laila
8th September 2013, 00:38
As I understand it, MND not only stretches the normal emotional coping mechanisms, obviously, but can also affect emotions resulting in 'emotional lability' , including uncontrollable or inappropriate episodes of crying or laughter, or emotional outbursts. The most reported medications for that on the PLM website are Nuedexta, foremost, which is approved in the USA, but appears not to be available here yet unfortunately, Citalopram as second choice, and then amitryptyline. Citalopram is an SSRI antidepressant. It is known that because of the physical make-up of some people SSRIs just do not work for them. I count myself in that group, Citalopram and other SSRIs make me worse. I think GPs will prescribe it because they don't have much else. I have tried two SSRI drugs both three times and hoped they worked, they didnt. I have asked for Nuedexta at my clinics but have been met with a blank response frustratingly as it is freely available in USA and is reported to improve mood, speech, swallowing, and bulbar symptoms in some people. Carol

pete
8th September 2013, 09:45
Hi Carol,

I will stick with the cough medicine then as that seems to be working for me up till now, did read about someone on an American site who said her swallowing had been maintained by taking the dex compound found in cough medicines ,and I tried it, so must do something ,not sure to what the dose levels are but it's certainly worse if I stop taking it ,not scientific I know but as long as it works !!!.

Pete

Laila
8th September 2013, 12:55
Hi Pete, the cough medicine sounds good. I got some earlier but haven't given it a try yet. Carol

Frank
8th September 2013, 14:30
Which cough medicine?
I have read this before as an aid for Bulbar, but not tried it.

I've had no good results from antidepressants; I'm in agreement with Carol, regarding the increase in my upper body shakes and lack of strength.
But it may be that I am not as far into the disease as others who benefit?
I have the best results for moderating emotions from opiates.
But they don't stop me laughing like a fool at inappropriate times, I just just don't care about what other people think with the use of opiates.
Is that good or bad?
xx Frank

Ellie
8th September 2013, 14:58
Nuedexta was approved for use throughout the EU on the 24th June.
For some reason, my emotional lability has improved significantly in the past year and I no longer bray like a donkey when I am in a stressful situation. So, for now at least, I’ll pass on Nuedexta as I don’t fancy another strong drug right now. Somnolence is a side effect so I could be asleep all day!
The fact that it also has potential positive effects on bulbar symptoms is exciting too.
Ellie.

john
8th September 2013, 15:15
This is the mnda take on what is happening.

Emotional lability
You may find you tend to laugh or cry at inappropriate times. This can be difficult to stop and you may feel out of control, which is often distressing for yourself, but also for those close to you, who may not understand.
This is called emotional lability (also known as pseudo-bulbar effect) and is a symptom of MND, though it is not necessarily experienced by everyone with the disease.
It is an abnormal motor response caused by the effects of MND on the pathway between the outer layer of the brain and the brain stem. This means your responses may not match how you feel. For example, you may laugh uncontrollably, but feel sad, or you may cry, but feel happy.
In many cases this is a temporary symptom that reduces over time, but if the responses are persistent and causing distress, talk to your GP. If your GP is not familiar with emotional lability, try to talk to an appropriate member of your health and social care team with experience of neurological conditions.
You may find that understanding the symptom is enough to help you and your family to manage the impact. Others find emotional lability limits where they go and what they do, and that medication or other assistance helps.

John

Ellie
8th September 2013, 15:25
Hi Frank,
Honestly, you’re right not to give a toss about what others think of taking opiates or any other medicines, for that matter. If it works for you, go with it. And if you ever want to stop taking them, do it slowly.
They served a purpose for me for a while and when my pain decreased, I came off them.
Ellie

john
8th September 2013, 15:32
Hi Carol,
Neudexta has been approved for use in the uk now but this link gives no launch date. The ms society say it has been approved for use with multiple sclerosis in June this year so it may be worth asking your GP about the present status and maybe the mnda can help.

http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=4174

John

Ps this was posted by Olly who is using it instead of neudexta.
The stuff I use, because I'm in UK, is Robitussin Dry cough medicine and that is the only one I can obtain freely here.

Laila
8th September 2013, 16:13
Hi John, thanks for the info and link.

Frank, some cough medicines contain dextromethorphan which is one of the components of Nuedexta, though much lower amounts in cough medicine, I think.
Carol

Frank
9th September 2013, 00:46
Thanks Carol, I'll pop to the chemist and see what is available.
xx Frank

john
9th September 2013, 01:34
Hi Carol,
Seem to recollect neudexta is a mix of dextromethorpan and quinine so maybe something else to take with the g&t s!

John

Laila
9th September 2013, 09:28
Morning John, it's dex and quinidine sulphate apparently. I reckon mixing with G&TS would probably be a good substitute for my sleeping tablet. Carol

Frank
9th September 2013, 11:46
It's starting to sound like something from my 'wilder' days going to soul all nighters. All the little acronyms like dex' and mixing meds. :p
I never thought I'd be still talking about pills in my mature years.
Any body up for a MND virtual rave :D

Mal.
17th September 2013, 18:34
My wife has been taking Citalopram daily for about a year and they have worked wonders. Prior to taking them she was extremely anxious (so much so that she used to get the shakes) and emotional. Now she does't get so emotional and her anxiety has diminished greatly. There can be side effects with Citalopram for pregnant women which I believe have only come to light fairly recently.

JAY TEE
3rd December 2014, 17:46
Just picked this one up. Glad some one else out there who has the giggles. I love classic music and watch sky arts 2 a lot and often sit ther giggling and crying. I was told by the consultant this a classic symptom of MND. I am off next month to see the Dubliners at Birmingham town hall so will need a big hanky😂

Bilando
4th December 2014, 17:29
I also have just seen this thread . Citalopram 1 mg/day stoppedt me crying overnight. Like others I was crying for little reason at all. However I still giggle like a fool often in situations which are not humorous. This does not worry me, except when I'm playing poker in the pub, and I'm not keen to add to the cocktail of meds I take. Is Emotional lability a symptom of PLS only or does it crop up in all variants of Mnd ? The exchange of information on this forum is a big help to me. Thank you to all who post !

Terry
4th December 2014, 18:33
No, it doesn't Bilando;

But I think there's more than Pls people that have it. I think that our emotions are made in one part of the brain and the frontal lobe part controls them. This is the part that that some mnd effects and causes problems, even sometimes aggressive behavior.

Probably Graham knows a bit more than me.

Regards Terry

Terry
22nd March 2015, 15:40
Hi Colin;

Brought this one up for you to read, I did take 20mg tablets though.

Love Terry

DaiTheDragon
22nd March 2015, 18:08
Been taking Citalopram for 16 years after stopping drinking and the depression showed its ugly head. Honestly don't know if they do any good now although I do take higher dose. No point stopping now.

Terry
22nd March 2015, 18:29
I think that they did positively an effect on my emotions swings but seemed to effect my movement detrimentally. Are you on more than 20mg per day David?

mik
22nd March 2015, 23:25
hi,
i've been on the highest dose of citalopram for 5 years or so. After having a few more down moments than normal my GP wants me to come off it and try another antidepressent. The problem is i have to spend 2 weeks coming off the citalopram and another 2 weeks getting the other one to build up till its useful. My GP has warned me that while the other drug takes that time to build up i could have quite a rough time of it mentally. So i said no, i will carry on is.
mik

boreham1
12th July 2015, 16:58
been losing grip pressure since i started on them . i might go back to 10mg . The dosulipin and the rilzole were the start of weakness in my arms in feb but i got a fair bit back when i stopped them both? It seems to me anything unusual added to my system shocks it and causes problems even loud noises and alcohol! colin

Terry
12th July 2015, 17:35
Hi Colin;

Yes I agree, most medication seems to affect me in regards to my movement. I thank once you get on a bit with Mnd everything has an effect.

If you can manage without things all well and good, maybe knock them off for a couple of weeks and see. If you have been on them for a while then ease yourself off of them.

Love Terry

mags55
7th September 2015, 15:21
Hi,
Has anyone been on sertralene?? I have been on escitrolpram well before I was diagnosed. I also take Clonazapam to help me sleep.
I am planning to change medication and already weaning off the escitrolpram to almost nothing.
The reason I'm changing is I want to take Amytriptelene instead of Clonazapam to help sleep, but can't take them with escitrolpram but can with sertralene.
Reading this thread, it has changed versed me about taking anything? I just hope changing meds won't make my mnd symptons worse? I know some since starting riluzole when first diagnoses, I feel everything has got a lot worse! I have emotional lability bad, so I think I need something?
Is anyone on Sertralene, if so, does it help? Also, although I have no side effects on the riluzole, I feel like coming off them now!
I just don't know what to do for the best? It may just be coincidence I got worse? Also, I went back on statins a while ago, maybe their making my symptoms worse?? Who do you listen too?
Mags xx

Terry
7th September 2015, 16:42
Hi Mags;

Sertralene is another SSRI drug. There does not seem to be anything about people taking it here. I think that all drugs can have some side effect and that might affect some of your movement. A lot depends on how far gone you are as when you have lots of muscles working you probably won't notice but when your are further along you might.

I still take riluzole. It's best to look at all the information and ask your specialist team. Try things out and see. sometimes it takes a few weeks for your body to accept things but I was not brave enough to try that long.

Love Terry

hanginginthere
7th September 2015, 16:57
They put me on 50mg Trazadone a day. Seems to work according to my wife. But she feels there are days when I should take a box at a time! Ah well I suppose we all have those sort of days! I do have an increase in fasciculations but with me I think it is diet induced. When I eat a glúten free diet I get none at all and when I go off the rails they come back. Each to their own I suppose.

Mike

mags55
7th September 2015, 18:15
Thanks Terry and Mike,
Everyone is so different!, escitrolpram was fine but as I say, can't take them with amytriptelene, but weaning off them is a struggle!
If riluzole is only helpful during the first year of onset, there seems not point in taking it, I'd hate to think it's making me worse but with this, you never know
Mags x

Terry
7th September 2015, 18:42
I haven't been told that it's only good for the first year. If it works then then it should work after a year as well. Many of us here have been taking it for over four years.

Love Terry

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