Had a very stressful week, John has had 6 episodes last week, all slightly different, but mostly passing out when coming round left side of his face has drooped and he cannot move his mouth of talk properly, has pain in his head, hands and feet, gets panicky and scared ask for me to get help. He has been to hospital had c.t scan in case it was strokes or bleeds, scan proved all clear. So now it seems another stage in PSP, is this the norm has any one else experienced this? Can anyone offer advise on how to cope seems we just have to ride them through, they can last from anything 1 to 2 hours, I'm now frightened to go out or turn my back for a minute. Thankfu lly I have someone from the hospice coming to see me tomorrow, feeling scared of how to cope or what to expect, is this going to get worse?. Any tips please will be much appreciated.
Hate this decease. Love to all Jean 😍xx
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Oh boy, I’m sorry you’re going through these new symptoms and scares! My husband doesn’t have PSP but he’s experienced too many fainting episodes along with cold hands and feet. Often the fainting happens when he has digestion troubles and difficulty with bowels. His blood pressure is all over the place and that will also trigger him to pass out. It a constant worry. The doctors haven’t confirmed his diagnosis but I’m thinking of MSA that I learned from this site.
The good news is that your doctors have ruled out stroke and bleeds. Hopefully this is a phase that will improve with time but one never knows with PSP. I wish you and John all the best!
Sewbears, thankyou, like your hubby John also has very cold hands and feet, so cold they couldn't take his oxygen levels, all other reading BP etc were normal, but he is suffering from bad bowel problems too, I will mention this to the hospice doctor today.
Dad had several episodes where he experienced something I call a waking blackout. He didn't pass out per say but became unresponsive. After he came around he always had a bad headache.
I believe my dad's neuro called such episodes vasovagal attacks. Dad has had about three of them so far. First time he had it, I thought he had choked and was gone since he was eating at the time. I had even tried to get him up and do the heimlich, however, he came to after about 10 seconds.
My husband was diagnosed with Vasovagal way back in the late 90’s. I’m pretty sure this was the first symptom of his brain disease. As far as I know there is no treatment for Vasovagal other than to try and control cramping and blood pressure. This is something we’ve struggled with for as long as I can remember.
Thank you Kevin I was hoping you would reply you always got sound advice as well as your experiences. You're right it sounds more like strokes or TIA, but the CT scan proved clear no signs at all., just received today his discharge notes saying diagnosis PSP.
At least you don't have to manage that on top of PSP.
I am sorry that I can't offer any useful comments on these symptoms and PSP. My experience of PSP is managing whatever comes along and keeping a close eye on both overmedication and other medications, adaptations and so forth, which might make things a little better.
You sound very on the ball with your care.
Wishing you both well.
Warmly
Kevin
I think the 'feeling scared feeling' is the worst... it can drain our minds & energy. Hospice helped mom & l so much. l hope they will bring you the same kind of support.
Yes granni b, my brain over this week has been so drained, he had a slight occurrence again this morning, we got through it and I'm feeling a little more confident now.😍
Isn’t it always surreal when a new phase develops? Even when we know ahead of time that it’s a possibility or just a matter of time. When the new normal happens it is still so shocking and my reactions are like “what the heck!”. It never gets any easier and it takes me by surprise every time!
My guy had several episodes in his last year where he would become suddenly very sweaty and very dazed and unable to move or properly respond for about 45 minutes to an hour, although he would become conscious and could speak before he could move. Very scary the first two times because we were upstairs at his remote place in the mountains and I didn't know if I should try to get an ambulance there. He was frightened. We waited it out. Later ruled out urinary infection, which had been suggested. Never got a answer. Just that it was psp.
Your description of passing out sounds more like Multiple System Atrophy where this is quite common, and the drooping and difficulty with mouth as well - though the one-sided nature does sound more like a stroke. The more I read, the more I think that MSA, PSP and CBD produce a mix of symptoms and people are on different bits of the spectrum with different elements of the 'classic' symptoms of each disease but perhaps they are not quite as distinct as the different names suggest? So if they have ruled out stroke then it is most likely to be part of the disease. In MSA it's problems with maintaining blood pressure that cause the problem with passing out. You don't mention if he's just eaten or stood up (or been lifted up) just before these episodes, or a change in temperature. My father had MSA and this happened to him a lot while eating or after eating due to blood diverting to the stomach. If that's the case think about how to minimise changes to where blood is flowing eg much smaller more frequent meals, maintaining constant temperature. I'm just making some guesses which may or may not be useful - but that's what all of us here have to do together!
My husband turns very (very!) pale before he passes out. If I can see him fading before he actually faints I have him lie down on the floor or the bed if it’s close enough to get to. Then I lift his feet up so that they are slightly above his belly/head. I can see his face return to a normal shade and I know that the blood flow circulated back up to his head. These episodes used to freak me out but as strange as it is I have figured out exactly what to do to prevent him from going down, but only if I can catch the signs in time.
It isn’t always food that causes him to faint. If he’s inside a room without enough air ventilation or if the room is overcrowded or too warm, he will get queasy and pass out. Once we were inside a big box store and I could see that he was struggling. I had him sit on a couch display and asked an employee for a wheelchair. They rushed one over right away. I transferred him to the chair and quickly wheeled him over to the cold dairy area where the temperature is fantastically cold. Hubby’s color returned almost immediately.
If I can prevent him from passing out his recovery time of feeling better is much quicker than when he goes all of the way out. After he wakes from a full blown fainting episode he will have a headache and be in a fog for hours at a time. The hardest part for me is being on constant guard because my husband doesn’t notice, there’s no signal for him to think “hey, I’m about to pass out!”. I’m pretty certain that hubby has MSA and not CBD or Lewy Body. We have a doctor review coming up at the end of this month and I’m certainly going to talk to them about MSA.
It's amazing how we can find a way through these new obstacles, we seem to understand their needs more than the professionals, where do we get our strength from. You're doing an amazing job xxJean
Have you tried compression socks to help keep more of the blood in his core? I read that they help in cases of vasovagal syncope and orthostatic hypotension. You may try them for trips out of the house, rather than wearing all the time.
I hadn’t thought about compression socks but it sounds like a great idea. Now that the weather is getting cooler this would be a good time to try them out. I’ll order a pair. Thank you!
Thank you each and everyone for your help and advice on this new symptom, unfortunately, it's been another bad day, John has been in a delirious state all day so out of character. He has had everything checked over the last weekall test proved negative, the only thing i can think of to cause this is his constipation, even the doc is running out of ideas, also the practitioner from the hospice cancelled her visit today, so annoying wanted her to see him in such a state, also our son is here visiting from America and wanted to have a good conversation with her, they said she will call tomorrow if feeling better. I dread to think what John will be like tomorrow!! I'm feeling numb and drained. 😍xx Jean
Jean, The numb and feeling drained sensations are normal reactions. I think it’s a coping mechanism of sorts.
Do you know how long it’s been since he’s had a bm? Have you given him anything for constipation? What did his doctor advise about this or did the subject even come up, given everything else that’s going on? Our doctor told us to take an over the counter stool softener which seems to help with regulation. I hope the practitioner from hospice arrives tomorrow. I’m glad that your son is with you. Please keep us posted.
Yes he too has prescribed docusate as stool softener and tonight a senna dose as its been 6 days today from last bm, doctor has said to call him in 2/3 days if no success.
Fingers crossed on practitioner coming as my son goes back Sunday. Will let you know.
We also have a family funeral on Friday, I feel we should be there, again fingers crossed.
,it's been a bad three days too, the practitioner from the hospice came Thursday and unfortunately not good news, she reckons John has gone to a further stage, it seems I've been looking after him too well especially in encouragement and feeding , as he could be worse, my son agreed for he is watching and listening to him and says it's as if he knows what's happening, As my son is here (until tomorrow), we did go to the funeral, so glad we did, but John was blank and non conversational, done very well thought, I did leave early. Today John for the first time didn't want to get up, a bad pain day so the carers didn't wash him just changed his sogging pad, hes slept most of the day with just spoonfuls of food, right now he has had a accident in his pad, called for help three quarters hour ago, still waiting, bet he has to wait till his 6.30 normal call. I tried writing a long text last night pressed the wrong button and somehow deleted it, never had the strength to type it all again, but thank you for asking as I have now kept you in the loop, been by his side all day doc hasn't rang yet as promised, it's weekend isn't it!!
Not looking forward to tomorrow son returns to America, but with assurance he will return at the drop of a hat. Roll on Monday and I can call all helpers. Thinking of you all here too lol 😍 Jean
Was the practitioner able to address the bowel issue? I hope that John has improved in that area.
I agree with your son in that even though John has a blank face and is non verbal he understands what is going on around him. I have had days when my hubby acts like that and he’ll sleep all day and all night too. I just let him be because there really isn’t anything that we can do about it. It’s worrisome for sure! I hope that your son can return to visit again soon. Such trying times! Sending huge hugs.
My husband has fainted several times while on the toilet and even passed out while being assisted from the bathroom. There could be a link.
Does your husband have orthostatic hypertension? It's quite scary-- whatever the reason. I don't know what causes my husbands issues but looking on google it seems like it's more common than I thought.
Shelley thank you for your reply unfortunately I haven't heard of. Hydrostatic hypertension, is this a symptom of PSP? I hope they can get to bottom of this for your husband, it's bad enough knowing the symptoms of this horrible disease, without having to fight the unknown too.
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