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β€’25 Replies

I've got a question and hope someone can help , when I have a coughing bout I either blackout for a few minutes or I have uncomfortable involentory jerking in my limbs and if I have either I'm usually left feeling confused and disoriented and I forget what I was doing does anyone else suffer from this , I'm off to see a neurologist next week my pulmonologist as made me an appointment she said that the lack of oxygen in my blood is causing small seizures not like epilepsy . πŸ‘

25 Replies
β€’
sassy59 profile image
sassy59

Hi Davey, have you been checked for trachea malachia? Pete has that and if he coughs out he can’t get a breath back in so his throat collapses slightly. His limbs jerk and he doesn’t know what’s happening. He’s not exactly like you but it might be worth a mention anyway.

What are your sats if you’re lacking oxygen in your blood? Just curious. Xxx

β€’ in reply tosassy59

I only go to the pulmonologist once a month and she gives me my full check up no sugar levels and O2 levels etc she's thorough , she said last visit my oxygen levels were a little low and I have to pick up two oxygen tanks one for home and one to go out with , I'll mention what you said and see what she says , it's been like this for the past year and half on and off , I'm not allowed out unsupervised and can't have a shower or bath unless someone in the next room for obvious reasons . Thank you for replying I'll speak with the pulmonologist next week when I see her and the neurologist

sassy59 profile image
sassy59β€’ in reply to

Good luck to you Davey. Take care xxx

β€’ in reply tosassy59

I keep trying 🀣🀣🀣

tomc profile image
tomc

I have been told the same, went to neurology and they said I`m OK just lack of being able to get enough oxygen with a bout of coughing.Good luck at your appointment.

β€’ in reply totomc

Thanks πŸ‘ I don't know about you but it is a horrible feeling and annoying because I get forgetful and totally lose track of what ever I was doing , apparently it can be dangerous because if you happen to have one of these bouts when crossing the road you could be hit by a car etc . Glad to hear I'm not alone on this one

tomc profile image
tomc

Davey, I`m sure there are many other folks in the same place.Some doctors even scoff at this condition, I have been put on Anti depressants in the hope that this will not only improve my moods but also the coughing. Go figure ??

β€’ in reply totomc

Bit of a joke bloody doctors should know better , one of the questions I was asked by the ESA and the pip where life expectancy , now c.o.p.d is progressive and irreversible as we know but being stage four which I am is end stage and I told them they asked again for life expectancy so told the pulmonologist whose first reply was I'm not god but then spoke to a colleague who said a smoker or ex smoker as I am as between a year and three years expectancy pip and ESA were finally satisfied 🀣

tomc profile image
tomcβ€’ in reply to

I am stage 3, My doctor says even at stage 4 if you eat properly and exercise regular you could live a normal life span.Define a normal life span ... a perfectly healthy person could die young or tomorrow.

I read an article and basically it was saying that people who OVER exercise regularly are shortening their life expectancy DOH! I think I will be a lazy clot and die comfortably.

β€’ in reply totomc

I think your doctor comes from a different planet 🀣 Google life expectancy of stage three and four you will see the difference , even my pulmonologist said she's not god but referred to another pulmonologist who clearly stated that in my case 1to3 years expectancy . And normal life 🀣🀣🀣 I'm on a machine four times a day or I can't breath is that normal life I don't think so I haven't been able to lay down flat in three years because I can't breath I don't think that is normal either 🀣🀣🀣🀣🀣

tomc profile image
tomcβ€’ in reply to

Yep, I think he is Kidoknees Stay strong Davey.

β€’ in reply totomc

He sounds like something 🀣🀣 keep safe keep strong πŸ‘πŸ‘

Damon1864 profile image
Damon1864Volunteer

Oh dear I do hope everything goes well it must be really frightening for you. Please let us know how you get on send love and virtual hugs have a lovely day and take care 😊 Bernadette and Jack πŸ• xxxxxx

β€’ in reply toDamon1864

Thank you for your kind words yes it's very scary strange country language barriers and lack of NHS β˜ΉοΈπŸ˜‚πŸ‘

Lol1944 profile image
Lol1944

Unable to bring the exact word to mind but this problem is caused by the coughing bout. You cannot breath st the same time.

β€’ in reply toLol1944

Yes I can breath I just cough like hell then when the coughing as stopped I can't control limbs from flailing about I get confused struggle to focus and forget what I was doing . Weird feeling πŸ˜‚πŸ˜‚

Lol1944 profile image
Lol1944

Had it myself the odd time. When coughing I am unable to breathe in, consequently my oxygen level drops like a stone.

Yes ! I tried to explain this to the pulmonologist but because of the language barrier she couldn't quite get the jist of what I was explaining she checked my oxygen levels which at the time were as normal as normal can be so she couldn't understand what the problem was hense her making an appointment with the neurologist , she's also made an appointment today with a cardiologist because my last scans shown legions of some description and wants it checked out . It seems to be one thing on top of another and the language barrier just makes matters harder πŸ˜‚πŸ˜‚

Lol1944 profile image
Lol1944

It never ceases to amaze me that oxygen levels are taken when sitting. Why not on exertion??!!

β€’ in reply toLol1944

This is one of the things I pointed out to the pulmonologist , I explained that sitting down your relaxed so your not using the oxygen , when you're doing something to exert yourself that's when the problems start I also explained that when your coughing all the pressure is on the lungs so your not getting enough oxygen into your body , bloody specialists don't quite understand .

There's one thing that really gets me down about being here , I feel isolated and alone there's no counseling no one for support , my daughter back in the UK keeps asking me if I have a girlfriend here πŸ˜‚ it always puts a smile on my face and explain to her no I've got nothing to offer anyone relationship wise , when you have a time limit over your head what seems to be the point it wouldn't be fair on the person you were with . It's different when you are already with someone but I guess I just see things realistically πŸ˜‚πŸ˜‚πŸ˜‚ .

DaisyEric profile image
DaisyEric

But you do have a pusskin Hidden I can see him/her in your profile pic! You are not alone anyway you have us lot!I have COPD my sister very bad asthma. She has seizures when a coughing fit gets totally out of hand too horrible

πŸ™„

β€’ in reply toDaisyEric

I have about eight cats all strays that I feed six kittens two adults , cats are everywhere here . Yes the seizures are horrible leaves you feeling lousy , you get some funny looks off people because it's not common here so I can expect funny looks πŸ˜‚ it's tough dealing with it sometimes I'm glad I'm on here apart from good advice when needed but always a pleasure to talk to people who can relate to everything . It may be a beautiful island I'm on and have lots of people around but you can still feel alone in a room full of people . πŸ‘πŸ‘πŸ‘

DaisyEric profile image
DaisyEric

You certainly can, but knowing everyone here understands is just such a good feeling isn't it?8 cats?! Wow you have plenty to keep you busy!

🐱🐈Take care of yourself Davey

😊

β€’ in reply toDaisyEric

I will do ! Yes eight is definitely a hand full 🀣 have to keep them hydrated the same as myself , the temperature the UK as had recently we were getting in February and now temperature gone through the roof and will be hot and sunny till October beginning of November then at night we have the rains . Just have to keep eyes on earthquakes we get a few of them for good measure 🀣🀣🀣 take care and keep safe πŸ‘πŸ‘πŸ‘

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