Hi, I came across this site by chance after typing in some strange symptoms I’ve noticed in my male partner who’s only 45. He’s had no end of seemingly unrelated symptoms and I’ve been convinced he had sleep apnea and that all his ailments related to this. Recently his insomnia has become so bad that he seems to have aged 20 years. Some evenings he shuffles around and mumbles and constantly falls asleep leaning over and slumping heavily to the right. He’s now suddenly developed a tremor when he tries to pick up a mug or use his mobile but this only seems to be in the evening when he’s chronically tired. Last night we went to a concert and he steadily went downhill looking like he was paralytically drunk, tipping over to the side and slumping forward and then holding his right arm up close to his side with a clenched fist, it was horrible and scary and everyone was staring because of how he was moving and behaving. Whilst exiting he could only walk in a strange sideways uncoordinated movement and was shaking and looked like he had a severe disability. This has happened twice before now to this extent which seems so strange (once a year over the last 3 years), it makes no sense! He had lots of other symptoms like constant burping and hiccups and has been really snappy and irritable in the last couple of weeks around the same time the tremors started in the evening but I just put it down to chronic fatigue. He’s often sick when he wakes and has very little appetite. Has anyone else had experience of all these symptoms in someone of this age? He’s had blood tests done and they are all fine but has really high blood pressure too? Does all this sound like CBD? It was someone’s comments about the leaning and tremors that makes me think he may have CBD which I understand also will not show up in any blood tests? I want him to have a brain scan but I don’t know if I’m unnecessarily scaring him if I tell him about this? Is he too young? Any help or similar experience would be greatly appreciated as i feel like my partner has suddenly aged by 20 years on some days and the lack of sleep is definitely becoming worse and more frequent.
45 year old partner could these be CBD sym... - PSP Association
45 year old partner could these be CBD symptoms? no sleep, leaning over slumping, tremors, burping, hiccups, irritable?
Dear Mogsygirl,
I’m so sorry to hear about the troubling symptoms of your partner. I do hope that he does not have CBD and given his age it doesn’t sound very likely, but clearly there are neurological issues and it seems urgent to find answers.
If he has not yet had a proper investigation, you should definitely try to get him to seek further medical advice.
Sleep apnea can lead to severe damage to the brain but according to some research it can be reversible with long term treatment. I would hope you could get a sleep study done with some urgency given his age and the severe symptoms. If you can speed this up through health insurance or a private consultation I would do so.
Best wishes
Bergenser x
Thank you, I am praying that he doesn't either but when his symptoms are severe they very closely match a lot of what is reported here and nowhere else. He has had a phone call today from BUPA for a full medical examination on Thursday, however, this does not include any brain scans but pretty much everything else. I am going to write him a symptoms list of what i've seen because he doesn't realise or won't accept how bad it is when it happens or the other subtle problems. We are also still waiting for his NHS referral to the respiratory clinic relating to suspected sleep apnea which is frustrating because I just want this confirmed or ruled out. It just all seems to take so long to get to the bottom of anything and there is such a catalogue of symptoms. In a way I hope we find it is sleep apnea and we can start to treat that with a CPAP machine because I don't now what i'll do if it's something untreatable and degenerative as everything on here sounds so heartbreaking.
I hope so much that you are not suffering from these conditions or have a loved one who is and thank you so much for replying to my post.
Please take care, all the best
Mogsygirl
Dear Mogseygirl.
my husband was diagnosed with PSP in June 2021, and died in December 2024 from complications related to this condition, age 69 years.
I had pushed for a sleep study for a long time as I believed sleep apnea might be causing the episodes of low oxygen saturation that he sometimes had - and clearly low oxygen levels can’t be good for the brain.
We were given a portable oxygen concentrator December 2023 and the overnight sleep measuring happened in September 2024 - we had the results back in November. The consultant called on the same day as my darling husband was put on end-of-life care. He did have (moderate) sleep apnea and I was told he wouldn’t tolerate CPAP. His brain was donated for research so I hope we will eventually get more answers.
I would understand your concerns waiting for the NHS referral . There are products you could try at home to sense check in the meantime - obviously not a replacement for the proper respiratory consultation. E.g. stressnomore.co.uk/products...
One more thing that springs to mind - I know you mentioned blood tests and I don’t know what they have checked for - apparently a B1 deficiency can mimic the symptoms of PSP - so that is one that needs to be ruled out.
I hope the medical examination on Thursday gives your partner and yourself some answers . No matter what the diagnosis turns out to be, you are better off knowing what you are fighting. If it turns out to be CBD or PSP there are definitely many in this community who can offer support and advice.
best wishes x
Dear Bergenser
I am so truly sorry to hear about your loss and what you have gone through leading to that tragic time. Thank you so much for still being here for people like me and helping because this is such critical information which i've not been able to find anywhere else! I will definitely look into the monitor if he doesn't get a referral soon to the sleep clinic and my goodness, I've looked up loads of information about B1 deficiency and yes it is shockingly similar so I will definitely be raising that in my notes to the consultant on Thursday - I can't tell you how helpful this is because that is a strong possibility given he was in hospital with Liver damage last year and I know the two are strongly related. I will keep pushing for the sleep referral, have the B1 investigated and still push for a referral to a neurologist for scans.
Thank you deeply for this information and I hope you are coping ok and have lots of support but also that you have some nice plans to look forward to for yourself.
Do take care and thank you - i'll let you know the outcome when I can.
All the best, Mogsygirl x
Hi mogsygirl, so sorry to hear about your partners symptons and appreciate the worry its causing both of you.My husband was diagnosed end of 2024 with CBD with many tests scans and blood tests to this outcome. It was not an easy journey.
Some of the symptons you've described sound like PSP/CBD which is an atrophy parkinsonism, but also these symptons can be due to many other things. (I am not a GP)
Have you had scans, CT, MRi PET?
It was after having these done, due to Dr's believing it to be linked to a stroke, but it showed no evidence on the scans, my husband was then referred to a neurologist, it was only then that he was diagnosed with CBD.
Getting a diagnosis can take time and alot of effort, but persevere for both your sakes.
My husband started displaying signs in 2020, which at that time he was 56. Though it may not be CBD that your partner has (symptons can differ from person to person), it could be something else which needs looking in to. Perhaps ask your GP for referral to Neurology?
I wish you luck in your outcome.
Best wishes
🙏🌷
Hi Birdie04
Thank you too for replying to my post; this platform is so overwhelmingly lovely and I'm glad I've found it no matter what the outcome is. We have not had any scans yet but this is what I'm pushing for. When he went into hospital for the day for test after a referral from the GP and they said they were going to do an MRI but because his ECG came back fine they said they didn't need to bother! I was not happy with this because obviously and ECG is far from being the only marker for neurology issues!
I feel Bergenser has made a valuable point that we need to rule out B1 Thiamine deficiency so I am going to push for this to be investigate and for a brain scans no matter what. If they refuse a referral then I will just tell my other half to pay to have a scan done privately anyway if it doesn't turn out to be B1 issue as I'm so worried about him.
Seeing how crippled he was seemingly out the blue on Saturday night was devastating, although it's possible that the lack of sleep had built up, lack of energy from not eating properly and then a couple of alcoholic drinks may have floored his B1 to the point it started to severely interfere with motor control? As you say, I'm not a GP and this is just speculation but I can't bear to see how he's deteriorating (when it does get bad) at such a young age 
Have you had experience of symptoms seemingly coming on really strong and then seeming to almost disappear again in the early days? Do you know if CBD/PSP can present like that? He was fine again yesterday other than being tired but Saturday night he looked like he should be going to hospital as he couldn't control his movements on one side!
I really hope you are coping ok and thank you again for your reply - wishing you all the best.
Kindest regards
Mogsygirl
Hi my husband has good and bad days. In the last year he was put on Thiamine and is continuing to take this as B1 levels were very low, so definitely get the bloods for this done. Once you have the results you can move forward from there. Either scans with neurosis or further 9nvestgations.Im not sure what an ECG would show neurological, but as I've said before I am not a GP, just going on my own experience, best to push for scans once results are back....it can be alot of toing and throwing and very frustrating, but keep strong and insist.
Take care of yourself
X
Thank you so much for this, it's all so helpful. My partner seems to have picked up again now he's had some sleep but his movements and speech have definitely slowed down over the last year and then he crashes dramatically when the lack of sleep builds up and the sickness. I've also just realised that every occasion that has been severe has involved him being chronically tired and THEN having a few drinks involving spirits strangely which he rarely drinks. So I do wonder whether the higher level of alcohol in spirit drinks or a cocktail can have an immediate effect either on depleting vitamin level or instantly effecting the brain even after one drink. As you said, all very frustrating!
Really hope you are ok and wishing lots of care, Mogsygirl x
I agree with the other posts that you have to be referred to a NHS neurologist via your GP. The idea of taking a list of symptoms with you certainly helped me with a referral from my GP to the neurology team, having been told that I was not an urgent case .The consultation was made within a month ! I have been diagnosed with PSP and the clinching factor was a MRI scan.
Hi Cake_lover, thank you for your response and I'm sorry to hear about your diagnosis but I'm assuming that at least it relieves the frustration of not knowing? Thank you for the encouragement and I will definitely be putting forward a list of symptoms and pushing for scans. I really hope that you are starting to receive the care that you need and are as ok as you can be! Please take care x
Has he had a thyroid test? Any rashes?
Hi Cindy27, thank you for your reply 
...no, he hasn't been tested for that yet but interestingly that is something I mentioned to him as well due to the high blood pressure, heart rate and some of the other issues. Although all the other symptoms were suggesting it is something else but it could be a combination I guess? What in particular made you think thyroid out of interest? No rashes but has suffered from a bout of hair loss last year and dreadfully flaky scalp which seems to have improved and comes and goes!
Any further insight greatly welcome, thank you x
My brother got very sick, some of the symptoms you described. Especially sleep and blood pressure issues. But he had flakey skin and rashes on his scalp, in his armpits, and other creases. No one could figure it out until they tested his thyroid. Turns out his thyroid had completely stopped functioning. Just think you should check it out.
Hi Cindy27, sorry to hear about your poor brother but thank you for this, I've had a look at the symptoms before but just reviewed them again on the link you kindly sent and I agree many of his symptoms match hyperthyroidism so I'll add that back on the list for investigation. Thanks again and I hope your brother is now getting help with this as recovering. Kindest regards
Mogsygirl
Itching/crawling sensation 
He asked the question 
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