I've just been reading posts regarding difficulty breathing, windpipes, etc. and if PSP is the cause of these symptoms.
My Neuro advised some time ago that eventually PSP does damage/weaken those parts, which is why so many of us have swallowing or speaking problems. A swallow test revealed I have mild problems with it, however it's measured; so far, so good, thankfully.
However, a symptom that started quite a while back that has now gotten to be a daily event is hiccupping when I first start to eat. Sometimes so violently I do have some choking, or the food won't pass into my stomach, or it's just not possible to continue eating because of the frequency and intensity of the hiccups; actually makes my chest and ribs hurt.
I brought this up the Cardiologist I saw on Thursday. His thoughts were that it's not heart-related but was relatively sure it was PSP related. I will certainly discuss this with my Neuro when I see him on the 8th.
Any persons with PSP or their caretakers who've experienced the same thing? This mostly happens when I eat solid food, but sometimes with liquids.
I always considered hiccups a nuisance but the type that's evolved is in a league of its own and starting to interfere with my ability to get nutrition.
I'd appreciate feedback; thanks in advance.
Judy
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JudyJ
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My wife didn't have the hiccups problem so I can't make useful suggestions but I did notice your previous post and you certainly appear to be 'going through the mill" at the moment. The one upside to your situation is that you have a good team of well informed and committed specialists helping you, so there is a good chance they will be able to ease your discomfort. One thing I learnt about PSP, from my little experience as a carer, was that some symptoms made a fairly sudden appearance and then gradually receded or disappeared entirely. I truly hope the hiccups is in that category, it sounds mighty uncomfortable and debilitating.
Wishing you speedy relief and the ability to enjoy your food again,
Thank you so much for your kind and thoughtful response; I really appreciated reading it.
As to the "mill", definitely have a storm cluster over my head, but it will pass, they always do.
As for the hiccups, they are more of nuisance right now than anything. Will talk with my Neuro about it and either something can be done for it or not.
Thank you so much for pointing out something I hadn't considered or heard of before...that some PSP symptoms can suddenly appear and then go away. You made my day. My general understanding was once a symptom appeared, I'd be stuck with it.
Hi Judy, S has the hiccups as well, but not to the same degree as you. Just very noisy, mostly when he just starts eating. Has not stopped him carrying on. They started a couple of months ago. Not really a problem, just a bit embarrassing when out!!! Don't last very long, thank goodness!
I am going to mention to his Speech therapist, when we see her next. It's probably to do with the way he starts swallowing at the beginning of a meal. I must admit, I hadn't really thought about why this was happening, until you have bought up this subject!
Just checked with your post and yes, you both appear to suffer at the beginning of a meal, so I am guessing it is a swallowing problem, try to be aware, what you are doing, when they start. I'll watch S and see if I can come up with an answer. Between us, we may be able to solve this nuisance. Let's face it, there is enough to contend with!
Lots of love
Heady
Dear Judy, So sorry that these hiccups are such a nuisance and I am just wondering, as you and others say that it starts when you begin to eat, could it be that the throat and gullet is a bit too dry when you first start to swallow? I was just thinking about myself (not a PSP) sufferer, but sometimes, on the odd occasions when I have started to eat and the food is a bit too 'stiff' to move down the oesophagus as quickly as usual, then I get hiccups! If I then stop eating and take a few mouthfuls of drink and give it a few seconds, the hiccups subside and then I can eat normally. To me, I see it in my mind's eye as as just lubrication to the back of the throat and the tube down to the stomache! I might be completely 'mad' sharing this, but what do you think? Do you sense a feeling of dryness in the back of the mouth when you first start to eat? A
• in reply to
Judy, Sorry for the mistakes in my message, I have just read it through and I would add, because I do not think that I stated clearly enough, the 'dryness' feels to me like if one had a very slight sore throat and it is that 'up and down' swallowing motion used to move the food from the throat seems not quite in sync because of some sort of dryness and it all needs moisturing up a bit!
That makes sense. S says he does suffer with a dry mouth a lot, so I will try making sure he drinks before eating. It could be something simple like this, that might make a difference!
See how you get on Judy, let me know if you are any better!
Just wanted to add, just trying to help; what it feels like to me is that the food has 'gone down' but is lying at the entrance of the stomache pouch. The sips of water or what ever I take then seem to 'wash' it all more into the body of the stomache and this bulk of food then signals to the brain that it has properly received the food and the phrenic nerve then gets switched off!
As you can see, I have a vivid imagination!!!!!!!!!!!!!!!!!!
So even during the meal it may be good to take just a small sip of liquid to keep everything 'on the move', (wash it down), but of course always being mindful of choking.
Ahhhh, that's what wine is for, to make sure the phrenic nerve gets switched off!!! Must make a note to buy extra, now I know the body needs it to function properly!!!!!
My mum has CBD and had a recent appointment with a speech therapist, she said currently there is little she can help her with but to contact her again when it gets to the stage she is issues with swallowing - so I'd advise seeing one if you are able to as it might help.
i do nto ha ve probe with hiccups but do tend to drink lot s of water 9Wand wine) so it may not be a problem for you either if you remember to drink lot s b4 and whilst eating
Thanks for your responses. It's just one of those 'things' that began as 'once in a blue moon' to now-and-then to a regular pattern. Have a slew of Doc-appointments coming up and will bring this up since the Cardio thought it could be PSP related. We'll see is I scoped or not. There are worse things, indeed.
Maybe Jill has it right...food goes down better with some wine...I might just try it.
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