Hi all, with CBD i seem to cry easily , ev... - PSP Association

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Hi all, with CBD i seem to cry easily , even reading something out i get choked, the slightest thing starts me off. Anybody else suffer?

tisha1953 profile image
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tisha1953
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jillannf6 profile image
jillannf6

HI TISHA

I HAV E PSP AND ALSO CRY MCUH TOO EASILY OVER NOTHING AT ALL

NO ANSWE RTO IT TA ALL

LOL JILL

:-)

tisha1953 profile image
tisha1953 in reply tojillannf6

Hi Jill, Will just have to put up with it i suppose and try and think of happy thoughts, my husband takes the micky out of me, especially when its a stupid thing like a cartoon on the TV, He makes me laugh. The silly thing is i dont really feel sad when i cry? :D x

peterjones profile image
peterjones in reply tojillannf6

hi jill how are you going along ok i hope well mate i used to cry over an Andrew Loyd Weber dvd or any stuff about the army and Germany where i was stationed once a long \\time ago in fact a lifetime ago it feels like \\\and at the same time i could find myself having a good belly laugh about something quite stupid i will not give you an example here otherwise you might think'' i flipped my lid '' anyway it does not happen very often now this was about 2 years ago i just put it down to psp or getting older and more sentimental peter PSjones queensland australia psp suffererp ps i hope you are having a wonderful time and enjoying life as miuch as you possibly can

jean2 profile image
jean2

hi Tisha

my husband, who has CBD, used to cry quite a lot so I asked his doctor to try him with antidepressants and he doesn't do it anywhere near as much now. I don't know if it's because of them or not but he was also feeling very depressed -his mood is generally better now than it was Jean

tisha1953 profile image
tisha1953

Thanks, maybe i should ask my GP if there is anything that can help, i dont really feel depressed but i suppose it does worry me sometimes, especially when i want to do things and forget that i am not as agile as i used to be. xx

Hi Tisha

Don't worry, you're not alone. I can cry for England. It can be a kind word, a soldier dying, a great dance on Strictly (yes even something as simple as that) talking to family about my condition, in fact anything with any emotion attached to it. As for antidepressants helping I have been taking them for about ,12 months now (mirtazapine) and they have made no difference, to the crying that is, but they have made a difference with the the depression, you should at least, talk to your GP about trying them. I'm 55 by the way and was diagnosed with CBD 18 months ago but reckon I've had it for about 3 years. I did talk to a my consultant and a psychologist and other carers about it but never got anything more than 'your emotions are heightened, it will happen' which doesn't really help when you're fighting back tears trying to talk to friends and family. Fortunately (or maybe unfortunately) I don't have to do it in a work environment anymore as I had to finish work (last October) as it was all getting a bit too much, physically and mentally for me. So, if you do find any cure for the crying please do let me know, xx Dave

tisha1953 profile image
tisha1953 in reply to

Hi Dave, thanks for your feed back, i went sick from work last august and officially finished end of Feb. Still trying to sort out benefits which is all very distressing and frustrating. As i said, think of happy times, also i try to look forward to good things, we try to go out at least twice a week, if only to walk around the local park or woods. i am lucky, we live in the country and have lots of walks in greenery and peace and quiet, not that i can walk that far now unaided. I don't always like to discuss where this decease is taking us, it can be upsetting, live for today and tell it f.....k off and leave us alone, i wonder sometimes what have i done to deserve it, i am sure i havn't been that bad? i have been a carer for most of my life looking after others, sometimes i think it must of been all the stress that has caused it, i know it hasn't helped. never mind, time to stop moaning, be happy lol x

in reply totisha1953

Hi Tish

You're welcome for the feedback, anytime. Anyway at least when somebody asks now why we are crying we can say 'have you never heard of the pseudo bulbar effect?' (thanks Strelley for the explanation). I'm not too bad at getting around at the moment, I get tired very easily but that's soon sorted I just take it easy for a day or so. I put my decent mobility down to the drugs my consultant got me on. I take a mixture of Amantadine and Stalevo which he said could work for a couple of years, maybe more maybe less it's hard to tell. Been on them 18 months now, still working, but still got my fingers crossed. I actually wasn't sure how much they were doing for me so I did a little test by reducing the dosage until I was on nothing. I could hardly stand up or lift my arms or legs never mind walk. I steadily increased the dosage back up to full amount and I gradually got back to normal (that's CBD normal of course).

I don't live in the countryside, I actually live on the outskirts of Leeds, luckily down in the Aire Valley by the river so I've got plenty of walking routes on my doorstep, my only problem is I don't manage the cold very well so I've been a bit of a prisoner over the last few months. Hopefully there's some warmer weather on the way and I can get back out again soon.

Good luck with the benefits side of things, it's an absolute nightmare, I was lucky in that I have a friend who's a mental health worker and he fills these forms in on a daily basis for his patients so he helped me a lot AND it was still a nightmare. I have to admit I've never once said "why me" I just accepted it (to be honest that was after months of denial). One last thought for now and I don't know if it'll help but I always tell myself 'I've got CBD, CBD hasn't got me' somehow it makes me feel a bit more in control.

Dave xx

tisha1953 profile image
tisha1953 in reply to

Hi Dave, got a call from the neurological service today, she advised me on my benefits and some information that i needed so that was good, i got age UK to help me fill in forms but they take so long to answer them, in the meantime your left with nothing and everyone still has to be paid. Well they cannot have what i havn't got can they, so there lol.

Where you live sounds very nice, we are lucky, we live in a detached bungalow so no stairs.

Now there is a name to this crying i won't worry so much, it upsets others more than me really.

Like you i get tired after doing things or walking for a while. I usually have a bad day the next day but then ok. i also have blood clots in my lungs so i get breathless. I do not take any meds for CBD, only for cramp at night and warfarin for my blood. Tried other in the early days with no effect, so gave them up. The symptoms that seem getting worse is that i have started trembling, first in my right hand and then at a lesser degree my left hand. sometimes my hole upper body seems to have an internal tremor, i will have to remember to tell my specialist, not that i am seeing him for another 5 months !!

Take care, Tisha xx

in reply totisha1953

Hi Tisha (notice I found the missing a)

They do take there time when it comes to handing over the benefits you are entitled to which is exactly opposite to when the tax man cometh. He decided for some reason in the middle of December to tax my pension at 40 per cent, I asked why, they said we don't know we'll change it back, cost me near on £400 by the time I got it sorted and I have to wait until end of the tax year to get it back. I try not to worry about money too much because as you say they cannot have what you haven't got and as I say when it's gone it's gone.

I also live in a bungalow, unfortunately it now has an upstairs, been here since 1989 so we needed the space for a family, fortunately I don't have problems with the stairs as yet and if it comes to it we can turn one of the rooms downstairs into bedroom.

I'm sorry the meds don't work for you I guess I should count myself lucky. I still get the tremors though, sometimes whole body, sometimes whole left side, never right side. I have to concentrate really hard to make it stop. I've asked people if they can see me shaking when I know it's happening and just about everybody says 'no you just look normal' which is infuriating in itself as it makes me feel a bit if a fraud.

I take it if you aren't seeing your specialist for another five months you don't have much contact with him. I see mine at least every three months and sometimes as short an interval as six weeks.

Take care, keep in touch, bye for now. Dave xx

tisha1953 profile image
tisha1953 in reply to

Hi Dave, Just wrote a long reply and then forgot to save it !! All that work for nothing :( Well here goes again, probably a shorter version.

I was seeing my specialist every 6 weeks, then 3 months, i have seen him 3 times since November because of the deterioration he has sent me for a CT scan and MRI scan, i last saw him last month. Not looking forward to the MRI, like being in an air conditioned noisy coffin, not good.

Had a good morning this morning, sorted clothes out, chucked a load out, changed the bed (with help) and did some washing. Now i am relaxing the tremors have started and back aching, it's worth it though to feel nearly normal for a while, its good to forget sometimes.

Don't worry about the 'a', with a name like Patricia i get called allsort of different versions, the only one i don't like is Pat, it sounds cold and sharp, they used to call me that at work.

Its my right side that is giving up on me, mainly hand and leg, i have had to learn to use my left hand, but i still try to use my right hand as much as i can. I have only just started using my stick, as i found people getting annoid with me when i fall into them, i'm sure they think i do it deliberately and think i am drunk :D I don't go out on my own now, i really miss it as i was independent and working up to last August. well this is longer than i planned, take care Dave x

tisha1953 profile image
tisha1953 in reply totisha1953

Oh dear, paying for it today !! My shoulder and chest are really sore, used muscles i forgot i had. Never mind, give me a couple of days then i will do a bit more, determined to sort things out, i am a bit of a hoarder, need to make more room before i am unable, giving me a sense of achievement. xx Tisha

in reply totisha1953

Hi Tisha

Isn't that always the case, you feel like you can do a bit round the house and you pay for it for the next day or more. I spent 4 hrs one Sunday last year cleaning the caravan with my wife and spent 4 days recovering. I've only ever had one MRI and hated every second of it. I'm now excused them because I have an electrode attached to my spine and a battery to power it buried in my bum to give me pain relief from a back injury i got some years ago now, so I get to have CT-PET scans which still don't tell them what they want to know, not had one for over a year now. Will be taking it easy tomorrow as I have spent a couple of hours today digging my daughters car out of the snow (she'd sold it, gone to work then texted to say somebody was picking it up this afternoon so could I clear the snow from it, kids hey, she's 25)

Right, TV or book, probably both.

Dave xx

tisha1953 profile image
tisha1953 in reply to

Hi Dave, hope you are ok after your snow digging, it seems to have cleared here but still very cold :( I haven't done much past few days, feel very lazy, will have to do more tomorrow.

Went for my blood test for warfarin this morning, it was very painfull, it has not hurt so much before, does our skin get more sensitive as we progress? I hope not toobad as i don't like pain, even taking off the plaster stang :( Am still waiting for MRI, i think i may ask GP for a sedative this time, My husband won't get in them, when he has to have his done he goes to london hosp. and they have one that you sit in up right, its a lot better, you just sit in the machine watching TV, but not all GP's will fund it. Because i have been in one before they won't let me go to London :P. Well better go and feed the dog, he is .waiting for his dinner. He is only 'little' he is an American Bull Dog, he thinks he is a poodle when he sits on your lap, he is a big softy, he loves kisses and cuddles and he keeps me warm :D. Talk soon, Trisha x0x

shasha profile image
shasha

I ALSO CRY VERY EASILY BUT LAUGH VERY EASILY TOO THOUGH- TO THE POINT OF NEAR HYSTERIA !!

tisha1953 profile image
tisha1953 in reply toshasha

I hope it not inappropriate laughing, it may get you into trouble lol I hope you feel happy when you are laughing? Take care, Trish x

shasha profile image
shasha in reply totisha1953

yes i am happy when i laugh but sometimes it turns to tears ?

It's called the pseudobulbar effect (or emotional incontinence or lability) and is part of PSP (and other neurological conditions). There is often uncontrolled (and inappropriate) laughter or crying (or both). With PSP it should not be confused with depression, and anti-depression drugs should be avoided (as their side effects seem worse than the condition, and they only have moderate/little effects for this problem).

My wife has PSP and "fortunately" she laughs more than she cries, so we enjoy the moment together! Even if it seems excessive, don't be concerned.

tisha1953 profile image
tisha1953 in reply to

Thanks Strelley, Its nice to have a name for it and it is normal, not that i shall remember it :D. i also agree i do not like taking meds unless really necessary.

shasha profile image
shasha in reply to

thanks strelly - i did not know it had a name but i do think that it must seem a bit odd to other people

JudyJ profile image
JudyJ

Hi Tisha:

I have PSP. I do have crying episodes out-of-no-no where, which is unlike me; never have been much of crier; it's neither wrong nor right. Early into my diagnosis, my DOC explained it's a symptom of PSP; not to worry.

Actually, I'm more like sasha and Strelley's wife. Laughing fits. The most inane thing can set me off, and my giggle fits turn to laughing fits which do reach the point of hysteria. I laugh til I'm crying and often people can't tell whether I'm laughing or crying. It feels out of my control.

This happens at least a few times a day, whether I'm I'm alone or with someone. Worst of all, tho, is it can happen in public, and that's a lot trickier.

I'll either hear or see something, or sometimes for no reason at all, start to giggle which leads to hysterical laughing, to the point of laughing til I'm crying. People around me don't understand what's happening; rightfully so. Once a woman raised her fist to me, thinking I was making fun of her; that's bad...

So...I seldom go shopping by myself anymore; I could get hurt for all of the wrong reasons:)

Judy

tisha1953 profile image
tisha1953 in reply toJudyJ

Thankfully i don't have laughing fits. i don't often cry out loud, but my eyes run and i cannot control them, people that see me don't know what to say, they think i am really upset. my husband is used to it, he knows i am a sucker for a touching story, i cannot even read a touching poem out loud !!!!

JudyJ profile image
JudyJ in reply totisha1953

At least now you know it's okay and an explanation for it.

Yes, the giggling-fits I have in public are NOT a good thing. People often assume I'm laughing "at" them, or their children, etc. The most random thing can set-it-off and in a blink, the process starts.

My Mom, Sister, both my daughters, any my best friend know what this is about, so it's okay...if in a vehicle...or visiting.

As to crying, tho not that often, it starts in a blink and go on for a bit.

jillannf6 profile image
jillannf6

hi ALL

I AM GLAD THERESI A NAME FOR THIS UNCONTOROLLABEL CYRIGN AND LAUGHING

TO PETER JONES IN AUSSIE - I AM GOOD - I AM SNOWED IN AGAIN INST EAD OF I TBEING SPRING AND THE DAFFS ALL OUT - WE HAVE A LOAD OF FREAK WEATHAE RIN THE UK

BUT I AM IN MY GREA TAPARTMENT WITH MY PARTNER WHICH CANNOT BE BAD

MISSED A RUGBHY LEAGUE MATHC TONIGHT -WEATHE RTOO BAD TO SER TFOO TOUTOSIDE

BTU WE WON TI WITH A TINY CROWD THERE

AND SUNDAY THE SNOW SHOULD BE GONE

LOL jILL

:-)

I AM STILL SINGING IN THE CHOIR, WHICH I JOINED 2 YEARS AGO, WHICH IS GOOD AS IT SLWOS ME DOWN

tisha1953 profile image
tisha1953 in reply tojillannf6

Hi jill, we are snowed in too, it is freezing, so much for spring, need to sit infront of a lovely log fire, all cosy and warm, with a big mug of hot chocolate, with all the trimmings, yum yum :D Have to make do with central heating and a rug and TV !!

you are lucky to have a good voice for a choir, my husband won't let me sing, don't know why !!! lol. He sings very well, he is a baritone, he gets a lot of praise from his friends, usually the women!!! He sings Tom Jones and Frank Sinatra and people like that. Do you sing outside the church? Take care, Trish x

jillannf6 profile image
jillannf6

hi trish

#i sing in a choir which rehearses in a church- but there the religious associations endsp i tsi a U3 A GROUP- i go to tai chi as well once a week

we have only put on 1 concert so far (12 months ago) and are puttign one on at end fo april and then one in november

your husband msut have a good voice and i tis so good to sing and to make music

lol JIll

:-)

tisha1953 profile image
tisha1953 in reply tojillannf6

I love to hear him sing, on holiday he sings to me by Karaoke and makes me cry and i feel silly, he only sings in the shower or car at home. I know he feels ok when he sings.

Tai chi sounds good, supposed to help with balance ? Am glad you can keep up your singing, it must give you a lot of satisfaction, keep up the good work. x

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