Hello all, I haven't been posting much. But I'd appreciate your advice. On Friday, my husband was going about his day, had driven to the grocery pickup, got home, and then started to have small hallucinations (ants that weren't there) and vomited. He texted for me to come home from work, and in the 15 minutes that took, he lost the ability to move his limbs--he couldn't stand up from a chair, couldn't lift his phone, and even started to feel it difficult to move his lips. I tried to get him to the car to go to the emergency room, but couldn't--and it took a couple guys to get him on the gurney for the ambulance. My poor husband was in utter terror that he was becoming permanently paralyzed and that they would think he was not "in there" and he lost it emotionally, which is utterly unlike his normal personality.
In the ER, they gave him an IV of fluids, something to calm him, and ran all the tests for stroke, chest x-ray, ekg, blood and urine. The only thing that came up odd was increased White Blood Cell count, indicative of infection, but no urinary infection. After a few hours of fluids and some sleep from the sedative, he was almost completely back to normal (except forgetful, probably from the sedative).
The doctors had NO answers (they were pretty useless, actually) and the only theory we came up with was that my husband reacted to a new antibiotic he'd been on for a week--because that's the exact time period it took him to react to the Amantadine. And it turns out that Amoxicillin affects dopamine (who knew?). But still--for my husband to go from "clumsy with Parkinsonism" to unable to lift his phone and even have trouble lifting his hands! Within 20 minutes!? He was also seeing double and his eyes looked weird.
Is there a name for this? He's been labeled "Possible CBD" because he didn't respond to levodopa like a normal Parkinson's patient. But does this sound more like PSP?
Thanks in advance for any pointers!
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LostinHeadSpace
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Hi. So sorry to hear of your recent problems. My husband had a diagnosis of CBD and he would seize up whenever he had an infection. I could not find answers so posted one night and received a reply from Canada from a lovely lady who told me that her husband could also seize up, which I was then able to tell the doctors, who really did not know. Several times he had infections which they could not find the soursce of. I know that this is not of much help to you as I cannot give you a solution. All I can say is just get them to treat the infection and things will hoefully improve. Big hugs AliBee x
Oh my goodness, AliBee, that is tremendously helpful! (Mini-rant: Why is it that doctors don't know the stuff that fellow sufferers and carers can find out?). Just to know that the infection is what should get the attention. We learned earlier than UTIs could just upset everything, so I was actually hoping that they found a UTI. We are really going to be in a bind if antibiotics cause hallucinations and they are what is used to treat infections. But I guess one step at a time.
It really was the most terrifying thing I've ever seen--he kept not answering the paramedics or doctor/nurses because he kept insisting "My mind is perfectly clear!" because he was terrified that he'd be stuck in that paralysis and people would think he was "not there." Whew. Again, I am deeply grateful that you have answers!
HiMy husband had seized up one day and was in bed. I finally got a doctor to come to the house, who walked in and said 'Hello Nigel, Your wife tells me that you are not very well' to which he replied 'I'm fine thank you' !!!!
To be fair to the doctors they don't get taught in their training, about CBD and PSP as they are rare. I only know this from a book I read about a lady who became a palliative care doctor and could not herself understand why rare conditions are not taught. That is why raising awareness is so importand and why this forum is a godsend to people.
It may only have been one sort of antibiotic that caused the problem or it could be the infection that caused the hallucination. The one thing I know is that one never really knows what is going to happen ! Good luck. AliBee
Oh my goodness, that's hilarious that he could suddenly say he was fine!
I'm not mad that the doctors don't know, but that they don't TRY to know. We've been seeing the most-recommended movement disorder neurologist, and he remains incurious about CBD because he hasn't seen it before--it's his wheelhouse! But I suppose we should just move on to our new referral.
Hello, I'm so sorry you are on this journey. My husband would often seize up. He lacked the ability to talk or reason at that point, so i don't know how it felt to him. I would sing and massage and get him to relax and he would eventually come back. Sometimes it would happen mid-task, like holding a spoon or walking. He also suffered from hallucinations and had to take antipsychotics to combat them.
Hello, Sorry to hear the difficulty. My wife has PSP, and has not suffered the issue you have mentioned. Also, when she has had infections (chest for instance) it has not caused any changes.It might help you to know, that these deseases are not straight forward. Not only are they rare (hence difficult for doctors to grow experience on what happens so rarely) but these deseases actually evolve differently in different persons.
Only a neurologist (and definitely not us in this forum) will be able to say if CBD or PSP, and even the most experienced neurologist can't be 100% sure of the diagnosis. It will at most be a degree of probability. At the beginning it will be a possibility of being one or the other, and as symptoms worsen, they become more characteristic and that allows for a more precise diagnosis. But will always be a degree of probability (not something certain).
You might want to know that within PSP, there are 5 or 6 subtypes, and they are not that similar to each other.
Not responding to levo-dopa is a good sign to discard "Parkinson" from "Parkinsonisms" (PSP/CBD/MSA etc), I'm not sure this fact helps identify which of the parkinsonisms.
on the hallucinations, although this is really not nice to hear, there is something that makes your husband more prone to hallucinations than some-one else. Hence this is maybe why the amantadine gave such severe hallucinations some months ago. Hopefully science will help improve such knowledge in the short future.
hence, my dear co-caregiver, it is quite normal that the doctors don't know why your husband suffered what he suffered. A lot of research still needs to happen. My experience in coping with this tells me that the more I accept the unknown (and the situation in general), the better I'll be in helping my wife and coping with the situation. Also, this has allowed me to not panic or be anxious in trying things. At this stage, the best Doctors can do is to try items and see how it goes. And if we want them to try with our loved ones, we have to also be open to the unknown/unforeseen.
I know its hard. I'm on year 6... My wife's first symptoms were in September 2015 (se was 45 then), Diagnosis of probable PSP only came in 2018, and that was shorter than average diagnosis time... now she is 52... totally paralysed but still smiles ever single day to us as long as we keep joking, interacting and loving.
Simon, thank you for your kind words and understanding. We started this journey at a similar point to you, in middle age, in 2018. Our children are in middle school and high school now, so it is completely overwhelming to try to create some normalcy to them, and both let them know what's progressing, but not burden with just how bad it could get. I deeply appreciate hearing from people like you--your acceptance and joy!
My husband did, in fact, have PSP and I believe that the amantadine that he’d been taking caused hallucinations ( at first benign, like numbers on the shower wall, but frightening to him because he knew that he was hallucinating. He’d take a low dose for about 2 years without a problem, but we’re told that the hallucinations could develop any time. He went off by titrating down ( as per doctor) but suddenly everything began to slow down and we ended up in the ER.It is amazing that those studying this disease don’t take the anecdotal information that we caregivers report and disseminate it and look for any commonalities among sufferers.
All of the research being done seems to be on finding a cure…great, but what about offering possible reasons and symptom alleviation to those who are suffering even if there’s no research yet to support suggestions etc.
My husband passed away 1/12/22, but this is still a pet peeve of mine on how MDSs support ( or don’t really) us as families even though there’s no cure or treatment for the disease per se at this time.
Just to say, we don’t know why, but some people have found…relief with…or when this happens, many people have this reaction.
Aurala, So sorry for the loss of your husband. Yes, it's the experience of the people here who have helped us already far more than the experts! I have even taken really specific info from here back to the neurologist, like the common UTI problems in Parkinson's patients, and he doesn't seem to know or care about that--but that's what we need help with! Quality of life is important and it really helps to know about the constellation of common symptoms and treatments to keep our loved one as happy and well as possible.
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