PDA

View Full Version : Emotional Lability



15storeys
20th August 2012, 13:58
Well, I've just had the most useless visit to my GP ever.

For the last few weeks my emotions have been all over the place, or more to the point, my emotional display. I don't feel depressed at all (in fact I probably feel the most cheerful I ever have in years!) but despite this I'm still having hysterical crying fits and laughing episodes at the stupidest things. For the first time I've had to call into work sick because I can't trust myself not to burst into tears or laugh inappropriately.

I hate bothering my neuro so I made an appointment with my GP surgery. Yet again I see someone I have never seen before who has no idea of my medical history. The only things she knew is that I'm taking tizanidine, clonazipam and quinine but she had no idea what for.

I explained my situation to her and the next few minutes were just awful. First of all she said I could be depressed from the stress of the MND. I explained that I feel fine, am still enjoying doing as much as I can and feel quite happy. My medication seems to be working and apart from being really tired I'm doing pretty well. Then she said perhaps my husband isn't as supportive as he could be. I explained that I couldn't wish for anyone more supportive but even he is getting fed up with the crying fits (although he quite enjoys it when I get the non stop giggles)! Then came the thing that nearly made me blow my top...she said it could be the menopause as I am 40 now....:mad: I've had to agree to a blood test to see if I'm menopausal and she gave me a leaflet on depression.

She finally admitted that neurology 'wasn't her thing' and so she's have to call my neuro and see if this was a possible symptom and then give me a ring back if there was anything they could do.

What does everyone here do when they have a problem? Are you able to go straight to your neuro to discuss it? Mine hates it if I don't go to my GP first to 'screen' my problem.

Becky

Terry
20th August 2012, 15:34
Hi Becky;
I cry and howl rather than laugh. I have written a fair bit about this issue in the forum. I carry a yellow laminated information sheet on Mnd, the ways that it affects me. In that, there is a section how Mnd has affected my emotions and how a third party can deal with them. Let the people around you know of your problems, and advise them on the best ways with dealing with you. The info sheet helps because I could not talk when I was breaking down. There are drugs but I have never taken any of them.
For me it has reduced as time has gone on.
Love Terry

miranda
22nd August 2012, 10:16
Hi Becky It is so frustrating not being able to make people understand that when those of with emotional lability cry, it is only rarely that it is because we are sad or depressed. Although my GP is great, trying to make her accept that I do not cry because of 'low mood' is like banging my head against a brick wall. Most of my tears (and often howling as Terry describes) are because something I hear or see is moving (as in emotional) I often have to block out things on TV or avoid emotional situations. I am sure lots of people had a tear or two at some of the olympic successes but I cried and howled!! I even cry if someone wins in a TV gameshow! Happy things make me cry far more often that sad things. As there only a few of us with this condition, we are not going to make the drug companies massive profits but I look forward to trying nuedextra when it hopefully becomes available in the UK next year. Sorry I waffled on but I find it so difficult to cope with this symptom but then I tell myself there many people coping with far worse than this.

15storeys
22nd August 2012, 15:51
Thanks everyone for your replies. I can really relate to everything you've said as the tears have been terrible for me (real wailing and sobbing) but even the laughter is hard at it happens at really inappropriate times. The Olympics was hard for me too and I can only imagine how much I'll cry during the Paralympics!

I've spoken to work colleagues over the last couple of days and upset one yesterday by bursting into tears and wailing while he was on the phone (all because he said I hoped I felt better soon). To appease my GP I've looked at some of the websites she gave me on depression (turns out I'm not depressed at all!). I've not heard anything back from my neuro yet so it looks like I'll be having a bit more time off work. I can't complain as I feel brilliant in myself but just can't control the wailing!

Becky

Terry
22nd August 2012, 19:29
Miranda, Becky and others, perhaps we could all have a get together somewhere. At least we understand each others emotions and could have a good laugh/cry. Where would it end. I always say that the men in white coats will take me away.
Smiling Terry

Terry
14th September 2012, 20:31
Below is what I wrote on my yellow laminated information sheet about emotions.
Emotional Problems
If I have an emotional break down, don’t worry too much. It may appear that the World has ended or some major trauma, but it is more likely to be several very small things added together. I am probably not hurt and not depressed, I just can’t control my emotions.
Motor Neurone Disease exaggerates and unbalances my emotions. When it happens I can’t speak and there is not much that can be done. The best way to help me is to quickly transport me away for people and after five or ten minutes I will regain my composure. I feel very embarrassed in front of people when I am like this.
If you can, reassure people that I am not hurt or have had any major trauma, it’s just part of Motor Neurone Disease for me.
I find it difficult to cope with people saying that “they are sorry”, “your doing really well”, or just looking with sympathy. I prefer that you are light-hearted and a little sarcastic.
It might be of some use if you have these sort of problems, you can show people the sheet instead of trying to talk, Terry

Irene
21st September 2012, 07:43
John is the same he howls also and finds it so embarassing but it cant be helped.At first when he cried I would give him a hug which is a natural response but soon found this made the situation worse because that made him cry more.My daughter often lets me know if shes seen a good film,She will say Dont take pops to the cinema cos he will cry/laugh so hard that other people wont be able to hear the film so we wait then till it comes out on dvd.I dont think people understand and many times weve had the shhhhh be quiet behind us.Well I learnt not to take that and I quite often stand up and say something.Im not a loud mouth or an aggressive person but where my man is concerned I will fight the world.Terry,what you have written down is a good idea and I hope you dont mind if I copy that xxx Irene

Terry
21st September 2012, 09:15
You are welcome Irene, I done it for when I was on my own but it is handy on other occasions. Natural instinct is to hug and cuddle, don't! be sarcastic and change the subject. It is very devastating to not go out and socialize without an outburst. I have not had it affect my aggression so far Graham, I guess it like the disease and is different in a lot of cases.
Terry

Graham
23rd September 2012, 21:05
Decision makers assessing pwMND may say emotional lability is an insignificant problem that doesn't impact behaviour. They may say the pwMND "has a choice" on their behaviour, even under provocation. Assessors may call pwMND exhibiting emotional lability as being "disgusting".

As with Tourettes, the MNDA must gain recognition for Emotional Lability in continuing care. Matching pwMNND with carers unaware of emotional lability is a recipe for disaster.

luce
24th September 2012, 23:09
Sometimes we laughed too, or ignored mum or looked the other way (to stop us giggling), sometimes mum pretended to be on the phone and laughing to a conversation (mainly when she was out alone and could not stop laughing- she got her mobile out). we got to enjoy the emotional lability, especially if it was at inappropriate times
luce

Graham
27th September 2012, 16:06
Robyn,

For the sake of pwMND, a statement is required from the MNDA on emotional lability.

My recent experiences have been very unpleasant, and I am taking legal advice.

Regards

Graham

Kate
28th September 2012, 23:25
Terry that is brilliant, I will also copy it if you dont mind as I think that is exactly what is happening with my mum x

Graham
30th September 2012, 20:56
Robyn,

As I am battling both MND and bureacrats solo, I would apprieciate the MNDA's support as explained above. My lawyer will be contacting you in due course.

Regards

Graham

Robyn Copley-Hirst
1st October 2012, 10:41
Morning,

The Association is very aware that this can be a distressing symptom for some people with MND and we do have information which is already available to people if they need it.

To find everything available online you can search for "emotional lability" in the search box at the top of our main website (http://www.mndassociation.org/). It crops up on 16 pages on our website alone - and Connect are always there if anyone needs to discuss this as it relates to them more personally. Some pages are more appropriate for people who have MND, and some are aimed at professionals.

If anyone does need some information it may be worth a search as some of the information in them may help. If you need any further information or discussion beyond that please do contact Connect.

Best Regards,

Robyn

Robyn Copley-Hirst
1st October 2012, 10:49
Robyn,

As I am battling both MND and bureacrats solo, I would apprieciate the MNDA's support as explained above. My lawyer will be contacting you in due course.

Regards

Graham

Hi Graham,

Just to say your post has been read. I know you do not have access to email at the moment, but do keep in touch via myself if you need anything.

This statement would apply to anyone affected by MND, but if there's any information we can provide you with to inform people of various symptoms, we're always more than happy to do that.

Aside from that we'll await your correspondence and go from there.

Best Regards,

Robyn

Graham
1st October 2012, 23:25
In Upper Motor Neuron Disease, damage is sustained to the motor cortex part of the frontal lobe and through the cortico-spinal, cortico-bulbar tracts that signal the basal nuclei at the base of the brain. The emotional centre of the cortex is not able to regulate/inhibit motor cortex signals in brains that have Upper Motor Neuron damage. See wikipedia.

This is a condition in its own right causing disability.

Evidence by sufferers in this thread show the condition is not recognised by medical proffesionals and those responsible for assessing disability.

Emotional lability affects the behaviour, psychological and communication domain of continuing care assessment. Behaviour is uncontrollable and as evidenced in this thread, run-away interactions can occur. Further, combined with no speech disability, frustration is a severe outcome. Specialised nursing that is calm, attentive and tolerant is required to manage the patient. Social exclusion caused by emotional lability has a severe impact on individual's psychological domain as witnessed in this thread.

Robyn, please have this text approved, or ammended by MNDA for legal submission. Thank you.

Robyn Copley-Hirst
2nd October 2012, 10:31
Hi Graham,

This element of our care information is currently being reviewed, in fact we're at draft stage with a section for the redeveloped Personal Guide on emotional impact, including text about emotional lability. I'll pass on your input, Graham.

Best Regards,

Robyn

Graham
16th October 2012, 21:55
Just had my assessment for 'emotional lability' off the chc/MDT team here in hospital including input from consultant psychologist. The assessment was 'emotional lability' is not recognised. It was stated I was contriving the behaviour in order to access continuing care. Consequently I was scored 'no needs' in this domain.

Claire, as no Robyn any more, through ignorance and a hint of spite, I am discriminated against and I will take this up with my lawyer through the Disability Commission. At a time of cuts targeting the weak in society, the MNDA must show more resolve in protecting its membership.

john
16th October 2012, 22:44
Graham,

When Irene was being assessed for her entitlement to continuing care the NHS person doing the assessing refused to have any regard to Irene's emotional swings which could be fairly extreme in tense situations( I presume because of her inability to express herself).
She felt that was normal behaviour and did not necessitate any specialist nursing attention.

These people are from another planet , I suppose if the NHS spent all their money on continuing health care there would be nothing left to enable them to employ useless a...holes!!!

John

Terry
16th October 2012, 23:02
Hi Graham;
A bit of a sh*t assessment, it is total ignorance. I have asked Mnda to produce an information sheet on the subject but they have other tasks scheduled before they can look at it. I am not willing to go to court over it but I am help with backing or help with my story on the subject etc.
My emotional problems do effect what I can do, as I know it does with some other Mnd sufferers. Being recognised would make it easier for many of us.
Why are things so complicated, do we have to fight for everything, Terry

michelle
16th October 2012, 23:26
Hi graham
Thought this may be of some use in your fight if not apologies.

https://www.pbainfo.org/sites/default/files/file/understanding/1/fact_sheet.pdf

Best wishes Michelle

Graham
17th October 2012, 23:02
Hi Michelle, John, Terry,

Thanks for your contributions and evidence that will stand up in court. I would encourage other suffers to submit their evidence here too.

MRI scans reveal cortico tract damage that is indicative of damage to the emotional centre in the brain.

My assessment was conducted by the principal assessment officer at the PCT. In her assessment she wrote that she did indeed try to provoke me and as I didn't strike her, I was indeed capable of controlling my emotions. My legs were shaking with the impact of her assessment for several minutes and I pointed this out to the attendant MND nurse. I will discuss with lawyer if there is a case to answer regarding this incident.

teynhambees
18th October 2012, 19:49
I have truly given up on the nhs today...I received my promised letter to my complaint about the level of care and service to date under the MND consultant and MND team. Obviously I cannot name individuals and its not a witch hunt, however, the letter still hasn't arrived by post and I had to chase them again via the secretary of the chief exec. I refuse to see anyone about my disease as I have been refused treatment with a neuro of my choice because I raised a formal complaint about the MND neuro...I thought patients had a choice where they received care...clearly not. I am paying for my own physio because the nhs have been a comple waste of my time taking me away from work when I am struggling to maintain a full time job..I feel I have little option but to go to the ombudsman via MP but I won't hold my breath! I was told that Kennedy's isn't a form of MND and not recognised by he MNDa but support patients...my argument is if its not a form of MND then why I am treated as an MND patient in fact why am I treated at all?....So I've drawn the conclusion give up

pete
18th October 2012, 20:06
Scott,

Will have to tell the neuro she has wasted forty odd years studying neurological conditions as she thought Kennedys was most definately a Motor neurone condition, I was under treatment for it for two years ,then they decided it may not be ,but it may be ALS bulbar ,
kinda makes you wonder dunnit ?

pete

Tommy Maker
18th October 2012, 20:28
I've found that talking to the various health professionals that work with me can help enormously before the visit to the GP, I have found hospice staff particularly helpful in this regard. As a consequence I go to my GP with some ideas as to how to deal with the problem. I don't - yet - suffer from emotional lability but I'd imagine its a symptom the bog standard GP does not come across too often, therefore, we have a role in educating them! Good luck...

Terry
18th October 2012, 21:07
Hi Tommy;
Thankyou for your support in this matter. You probably you won’t have problems with unbalanced emotions if they have not manifest themselves yet.
Your situation sounds similar to mine, I trudge around forwards indoors with a rollator and use a wheelchair or scooter out. Need a lightwriter to help communication and have two boys,19 and 22. I still just about go to a private gym with help.
Nice to have your input, welcome to the forum, Terry

teynhambees
19th October 2012, 15:30
Pete
Little options left now I'm still waiting for my letter from the nhs so I've contacted the ombudsman...sad :( now without a neuro who has experience with MND as ive been refused to go to another area and frustratingly if I lived 200 yards down the road I would not have been in the trust I'm having all the problems with yet they refuse to see me. My basic human rights to treatment has clearly been ignored...all in all its s@@t
Scott

Graham
19th October 2012, 21:18
Hi Scott,

I feel for you mate and know exactly what you are going through. However the grass looks brown all over the U.K.

I am encouraged by current research testing HUMAN motor neurons and making progress. The next generation of trial drugs/therapies shoulld actually work.

Terry
8th September 2013, 12:15
Hi Lyn;
I have just moved this up for you to look at, Robert is not alone.
regards Terry

Graham
13th March 2014, 16:23
Liz

This is the essential reading for my carers regarding emotional lability and what carers need to understand. The MNDA leaflets make no attempt to portray the psychological impact this phenomamon has.

sbrown
23rd March 2014, 20:27
15storeys my mum is just the same she bursts into tears for no reason then she laughs out loud at really random stuff, reading alot of these comments has really helped me to understand whats going on. my mum is very cuddly to hugging and kissing family members which shocks a few people. at least i can now try to understand whats going on. i find this forum very helpful. keeping smiling sharon xx

Terry
23rd March 2014, 20:58
Hi Sharon;

It is quite common and drugs can help a lot, but for me they had side effects that I was not willing to take. It is handy to have some understanding by reading these posts.

Best wishes Terry

sbrown
24th March 2014, 17:03
well ive lost all faith in the nhs my mum was told she has mnd by letter which i thought was disgusting, i thought the neuro dr should have sat my mum and dad down and told her face to face that she has a terminal disease not just send out a random letter im totally disgusted with how this was done.

Terry
24th March 2014, 17:47
I agree Sharon;

It should be done face to face and with an independent person to help people through the shock afterwards. I have not heard of other people being told by letter, that is disgraceful.

Terry

Davec
24th March 2014, 17:53
Sharon
I am shocked ! The disease is bad enough but to hear it like that is unfeeling and simply not appropriate
Hugs
Dave

Graham
24th March 2014, 19:20
Hi Sharon,

There are many incompetent NHS professionals involved in caring for people with MND. I am not surprised to hear of the inappropriate way your mother was handled. You must take control yourself and read the posts on here that are more instructive than the average NHS doctor.

Emotional lability is indicative of Upper Motor Neurone damage that is of the group of diseases labeled Primary Lateral Sclerosis, PLS. A true diagnosis of PLS takes a minimum of 4 years and 'pure' PLS is not terminal. However utmost good care is required to prevent complicating factors, such as flu and pneumonia, becoming life threatening risks.

I have predominantly UMN ALS for over 6 years and I look forward to being able to talk and walk again.

Mollymolly
24th March 2014, 19:33
Hi terry , I hope you don't mind me asking but what side effects did you have from the emotional liability. My dad is currently taking a tablet and although he really does need it (he laughs and crys all the time, you can't even have a conversation with him) I do wonder about certain side effects I feel he may have.
Thanks as always

Alan Livett
24th March 2014, 20:03
I thought my experience was bad enough. I was told by a neuro and within ten minutes was given three bits of paper. One for a blood test, one for breathing tests and one for riluzole. I then had to find my way around the hospital to the various departments. No info or support. My experience sounds fantastic compared to receiving a letter. What a disgrace!

Terry
24th March 2014, 20:43
Hi Molly;

I was prescribed Citalopram for my emotions. If you put that if the search box, (top right of this page) you should find the thread "Citalopram prescribed for emotions". http://forum.mndassociation.org/showthread.php?3217-Citalopram-prescribed-for-emotions SHOULD take you there.

Regards Terry

Terry
3rd December 2014, 16:55
Have a look at this thread also Jay Tee

Terry
12th May 2015, 11:24
Hi;

I do use distraction techniques and my family do if I'm out.

I can offset the sad swings by simply saying to myself "It's not sad". Sometimes a quick loud outburst of emotion stops it progressing.

My family will stand in front of me and talk about something else to try to take my mind off of it's track.

I'm not very good at controlling it and restrict where I go and what I see. Also I careful what I watch at food times as anything funny or very nicy and kind can set me off and anything that is jumpy often ends up in me throwing it or drinks all over the place.

Love Terry

Graham
12th May 2015, 12:23
Hi Terry,

I hope that you are keeping as well as can be expected.

My emotional lability is getting no better too. It is thoroughly embarrassing at times and certain carers think it is good fun. I cannot help but smile now when a carer yawns. I will yawn too and the party will begin. The carers then cannot understand that I think it is infantile as I participate in all the fun.

Take care

Graham

Steve
12th May 2015, 13:36
Mine is frustrating, my lad is playing up since the arrival of his brother but when he is naughty I can't help but laugh. My wife then accuses me of encouraging him, she doesn't believe EL exists which makes me more frustrated which makes it worse.

Terry
12th May 2015, 16:58
Hi Steve;

Show your wife this thread and maybe she will understand a little. A few years ago, the some specailists were very doubtful about it being caused by Mnd.

I have heard that someone recently laughed when in real pain, I have not experienced that.

But I could see someone laughing in pain as I laugh at the wrong times that greatly upsets my wife. When she is serious or cross with me I quite often laugh, that goes down very well???

Hi Graham;

It is good if you can all laugh at things. The hospice used to give me a bath before being stretched. They used to cover my modesty with a towel when being hoisted into the bath but it got wet so I said and used a flannel. That made them laugh with a few comments. Anyway, next week I brought two leaves in, one a very large one and one small. I have never heard so much laughter, it went around the whole hospice and made many smile.

All at my expense, but don't tell anyone.

love terry

Barry52
12th May 2015, 18:13
My funny story on this subject relates to a meal at our home for my brother in law, his wife and me and my wife. My b.i.l. was sitting opposite me and he said something funny as I was swallowing a mouthful of red wine. I started to giggle with my lips tightly closed and the wine came out of my mouth like a jet wash all over him and the wall behind. I could not stop laughing so my wife had to apologise for my behaviour and explain about emotional lability. He forgave me.
It is good to learn that even with the adversity this disease brings we can still laugh on occasions.

Best wishes all.
Barry

Terry
18th August 2016, 22:35
Hi Becky It is so frustrating not being able to make people understand that when those of with emotional lability cry, it is only rarely that it is because we are sad or depressed. Although my GP is great, trying to make her accept that I do not cry because of 'low mood' is like banging my head against a brick wall. Most of my tears (and often howling as Terry describes) are because something I hear or see is moving (as in emotional) I often have to block out things on TV or avoid emotional situations. I am sure lots of people had a tear or two at some of the olympic successes but I cried and howled!! I even cry if someone wins in a TV gameshow! Happy things make me cry far more often that sad things. As there only a few of us with this condition, we are not going to make the drug companies massive profits but I look forward to trying nuedextra when it hopefully becomes available in the UK next year. Sorry I waffled on but I find it so difficult to cope with this symptom but then I tell myself there many people coping with far worse than this.

Hi Miranda;

It's been 4 years and I'm still crying after most races and events. 2016 been a good year for the British team.

Love Terry

Barry52
18th August 2016, 22:45
I'm with you Terry. When the Brownlee brothers won gold and silver I was in floods of tears. The thing is I don't care anymore.

Barry

Terry
9th January 2017, 12:50
hi liverpool;

there are some good posts on here, especially graham's ones. it is unusual for mnd people to be aggressive but perhaps 1 in a 100 are. this is due mainly to the mnd damaging the frontal lobe area of the brain. drugs do control it and can be a must. i knew old smallish middle class lady that became so aggressive.

love terry

Liverpool
10th January 2017, 14:18
hi liverpool;

there are some good posts on here, especially graham's ones. it is unusual for mnd people to be aggressive but perhaps 1 in a 100 are. this is due mainly to the mnd damaging the frontal lobe area of the brain. drugs do control it and can be a must. i knew old smallish middle class lady that became so aggressive.

love terry

Hi Terry,

Thanks, i'll have a read through the posts. When i say hes aggressive, he has always had a bit of a temper and is very impatient at times so does become frustrated. The specialist nurse from Neuro visited him yesterday and has recommended a different sleep apnoea machine/mask which will hopefully give him a better sleep and help with the crazy-talk during the night....hes also agreed to trying anti depressants so maybe that might make a difference too?

Hoping that once we can finally get him home, and hes getting a better sleep things might improve for him... fingers crossed anyway x

Terry
10th January 2017, 19:47
Hi Liverpool;

Doesn't sound as if he has that aggressive type and probably a multitude of things, most to do with Mnd. See how anti depressants work, I'm not a strong lover of them but others do need them.

Love Terry

alfies mum
10th February 2017, 09:52
I am having an emotional week and have been howling a lot the last few days.I had to have one of my cats put to sleep this week as she had lung cancer and it started me off.The slightest thing I hear or see and away I go .Yesterday it was all over a new jigsaw puzzle I had started. I knew I had done some of the outside pieces wrong so I was moving them around when my husband passed by and said "You have missed some of the pieces in the box"and then he laughed.Well that was it I slammed the lit of the case down through the box on the floor and stormed off to the kitchen .Then it started howling like banshee and started choking and sheets and sheets of kitchen roll being pulled off.10 minutes later it turned to giggles and everything was calm again.All over a bloody jigsaw
Getting back to cats I still have Alfie and Lewis so I can keep my name
Alfie's Mum x

mags55
10th February 2017, 22:00
Hi alfies mum
I know, this emotional lability is a nightmare.
I laugh when I'm angry, I smile over bad news. I even smiled all through the service at a funeral. It's ok for those who know me, but those who, well I don't know what they thought. When I cry, it can go on all day and then again in the morning.
Mags x

Terry
10th February 2017, 22:13
Hi Mags;

have you tried Citalopram for your emotions, if so did it make any difference.

Love Terry

mags55
10th February 2017, 23:13
Hi Terry
Im on sertralene. I used be on citrolpram during my diagnosis as I was in a state for 18 months. At first GP thought I was depressed when I first got my twitches. I didn't know it then, but I experienced emotional lability way back. Once I was diagnosed, I wanted to go to on amytriptelene but couldn't whilst on citrolpram so my dr put me on sertralene. It's obviously don't help me in that way?
Magsx

njm
11th February 2017, 11:58
Mag55:
Amitryptyline is what they call a 'second generation' anti depressant. All the others are newer anti-depressants are very similar. they are much of a muchness. I use Duoloxetine and it definitely reduced my lability.

Charles

mags55
11th February 2017, 20:03
Hi Charles
I don't use amytriptelene as a antidepressant, you have to take over a 100 mg for it to act as a antidepressant. I take 25mg for nerve pain and to help me sleep. Sertralene is my antidepressant. It's coming off one and starting a new one,
But thank you
Mags x

bakeit Forum