Hello fellow members. I havent posted very much at all on here as I am quite new to the group, but I have learnt an awful lot from your comments. My husband has been diagnosed with PSP in February of this year
At the moment I would say he is in first stages. He was given Seminet but it really made no difference to his condition so from last week he finished with it. Today he says that he has had for about a week or so now a "Muzzy" feeling everytime he gets up to walk around indoors or walking outside. Can anyone tell me if they or their loved experienced the same feeling. If so is there anything I can do to alleviate this awful feeling for him. I do really feel quite helpless. We have only just started getting help from our local Healthcare as during Lockdown we were on our own basically. We are in the UK Bromley Kent area. Thank you so much❤
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Autumnstone
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My husband was on Simemet throughout his journey. Whilst it never looked as if it was doing anything for him, I always noticed when he was complete.y off them. In the end, I just played around with the dosage, until we both agreed, that was the right dose. It wasn’t very high in the end, but just enough to take the edge off. I can’t remember if he described he was feeling muzzy, certainly, he didn’t feel right.
Every case is pretty much unique. If he says is experiencing a muzzy feeling I would believe your husband. Couldn’t hurt to try a lower dose as Ann suggested.
One thing PSP does, is stop the sufferer from be able to use his words properly. He says he is feeling muzzy, it might actually be a completely different feeling. Try asking the same question in various ways. One example I can give you - “Are you in pain? No,”. “On the scale of 1 - 10, what level are you? 12” That was Steve, when he broke his wrist!
My husband also took sinemet throughout. I reduced the dose but he believed it helped and that's what matters. He also complained of muzziness throughout.
Sadly there are so many things that can't be stopped - just keep trying.
Hi my husband also complained of a muzzy head, he was diabetic high blood pressure, but took nothing for the PSP, it is a horrible illness. Must be a relief that you are getting some help? Sending you big hugs Yvonne xxxx
My mum often said she had a muzzy head and I'm afraid we never resolved it. She took Sinemet for several years, when she first took it, we felt it helped with movement, seemed to stop her lurching so much. When she stopped taking I, we noticed no change.
I wondered if the muzziness was in some way related to her vision. If the eyes weren't moving together, taking different times to focus would that make you feel muzzy? Would just the slowness of thought that happens make you feel muzzy? I don't know.
Glad you are now getting support, it must have been very difficult for you during lockdown, our Community Matron was a huge help and support.
My husband was diagnosed last year after initially being told it was mild cognitive impairment and then Lewy Bodies. He often said his head felt 'fuzzy'. He doesn't often mention that these days but that could be because there are so many other symptoms now.
How long has he been taking the Seminet. It does take a little while to get into the system properly and my father in law his symptoms worsened for a little bit before they settled. He is alot better on it than off. My father in law says he suffers with a tingling fuzzy feeling mainly in his head but when he has a bad day it courses through his body. We haven't found anything as yet that has changed that as yet. Not sure this helps but you are not alone. Xxx
Sadly, Ian's fuzzy head developed into a continual dizziness and lack of balance. He has been on Sinimet since before his diagnosis. He is also taking Xadago which is supposed to help his balance. As we haven't seen a neurologist for 18 months now, hmmm, we are continuing with all meds.
Due to lockdown, his last appt was cancelled and no new one has been made, despite my gp's phone calls. Hey ho. Not much he could do anyway.
I do find that we all have to find out own way through this with our loved one. Professionals don't seem to have any answers. It is a road very much less travelled. But that's ok. It is a privilege to share here with so many experienced "travellers."
Wishing you and your husband the best, Autumnstone. I'm sure we will chat again soon.
Ruth (with CBD) complained of the muzzy feeling from the start. One of her first symptoms. I fear in her case ( and every case is different) it does not get better. She has been taking an anti-depressant (Sertraline) from early days and this has helped her mood greatly and not made the muzzy feeling any worse.
This is my first post, although I have been reading all the posts for sometime and have found the information helpful, reassuring and scary in equal measures! My Dad is now in final stages in a care home in Orpington in Kent where he has had invaluable help and support along with the NHS. As we’re in the same borough I’m sure services would be the same. Community NHS services were OT, Speech & Language (includes swallowing), physio, eye checks and checks at the PRUH (that weren’t very useful!) Sinemet was no good for Dad either unfortunately. It’s a lot of paperwork but, a blue badge for the car (physical walk round the Civic Centre in Bromley was his check for eligibility!) and Attendance Allowance are definitely worth applying for. As things progress aids and gadgets online, some of which are VAT exempt. Finally St Christopher’s Hospice are fantastic! Any more local information I’m happy to help if I can.
Hi Trixi01, we now have had visits from OT, SALT, & had grab rails fitted over the house plus things which I had bought myself during lockdown. Physiotherapist gave him exercises to do during lockdown but as I told the OT thats all very but I dont know if he is doing them right or infact are they doing any good?? She has referred the Falls Clinic to pay us a visit been there & had dealings with them before which to be totally honest with you they couldnt get their act into gear!! Its sounds as if I'm having a go about the services, which so far this past two weeks have been really good & helpful , but I'm just speaking as I find. I did say to my husband that I think he should get his eyes re tested. Thanks for all your tips they have been most helpful ❤ xx
You’re welcome, we found that just as we thought we’d cracked a particular problem another one popped up! I agree with a lot of the posts unfortunately that say there is a limit to what can be done. Physio for example for my Dad was ok at the appointments and then even leaving the room he would forget to concentrate on lifting his feet up! Xxx
Steve was involved with a Parkinson Group for exercises. They were excellent. Of course he forgot everything when he got out, but for an hour he was walking, marching, throwing, you name it. He loved it. This was a man that ran his own business, was always running, playing squash, or rock climbing. When he couldn’t manage that, I had the same young lady, come privately to the house, twice a week, right up until he died. Not sure it ever did any physical good, but he could still weight bare right up until his last couple of days. For me the best bit was, it gave him something to look forward to, that was his alone. So mentally, worth it’s weight in gold!
Hi Anne, it' strange you should mention the Exercise Group for Parkinson as I am a Volunteer for a local group in Bromley. Unfortunately because of Lockdown those classes are all cancelled. We think he might be interested in taking part in a Strength & Stability class at our local leisure centre. 🤞 He was such a fit guy, ran the Marathon, loved running, playing cricket. Its heartbreak ing😪 ❤
I've been on Simenet for over six years now, I'm better on it than off it. My MDS has told me that many of her patients did not benefit from the drug at first and went off it. When it was introduced for the second time, the patients had better results, and yes, the dosage may require tweaking. Muzzy or fuzzy? I called these brain zaps in the beginning only to learn this was neurogenenic hypotension - drops in blood pressure often experienced when changing positions ie. sitting to a standing position. Lately, I experience this a few times throughout the day and have on one occasion blacked out briefly... very disconcerting. I now take my BP every day followed with a picture, so that I may show my MDS at my next appointment.
My mother was also diagnosed with PSP on February, her doctor put her on Sinemet 100 4 times a day , then we noticed that she was having hallucinations and it was increasing by time and she was dizzy and she was in stage of apathy. We called her doctor he said yes its from the medication and he reduced the dose . She is still having apathy but to lesser degree and hallucinations disappeared totally. I noticed when she started that medication she got calmer which was good for her since the time of her diagnosis she was so apprehensive and tense and crying all times.
I really wish all patients and all loved one can overcome these conditions because we dont want them to suffer by any mean . Take care
I have PSP and I have the “muzzy” headed feeling whenever I. am Standing or walking. When I’m sitting or lying down I feel normal. My MDS thought it could be orthostatic hypotension....but after tracking my blood pressure bgotyh sitting and standing up under a yyyy a month it was ruled out. So I’ve just learyyyyyned to live with it. I went off sinemet trying to get relief but it didn’t help. I didn’t go back on u? I praying that there wil because I didn’t think it helped me.
I was diagnosed with PSP in January 4 years of believing I had Parkinson’s . I had my first symptom ( my voice getting very soft) back in 2007-08. Then in 2010 my handwriting got teeny tiny and I had a bout of debilitating depression. In 2011 I fell backwards and fractured my ankle...in 2016 I fell backwards and fractured my back.
In 2019 I was diagnosed with PSP ...and I can still walk,talk, dress myself, feed myself and take care of my personal hygiene. I’m blessed that after 12 years...I can still do these things but."...there are many things I can’t dol. I can’t cook or do housework or go shopping. I feel guilty because my husband has to do It all
But i try to stay positive and keep on truckin’’. I’m pretty stubborn and I I’m hang on until there’s a cure🥰💕💕💕
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