Dystonia and memory loss/ cognitive functoning

[Maisie2016]

Hi I know that dystopia doesn’t tend to affect cognition or memory, but I have infant onset generalised dystonia and I’m now coming 52. I’ve had to give up the SEN/ASDteaching vocation I loved not just because of my decreasing mobility ( it’s never stabilised for more than a few years and has slowly declined my whole life) but because I went from having really quick thinking and responses, to becoming more and more unaware, and I felt I was putting pupils at risk. The school have been amazing, I had so many reasonable adjustments for almost all my time there and it was me who initiated the I’ll health retirement process because suddenly when they changed the paperwork ( a regular occurrence I’ve always coped with) I suddenly couldn’t understand it or remember what I was doing next in the classroom and out of it.

I’ve been under same neuro at kings for 19 years who I absolutely adored but having seen a new one and not being able to tell her my most pressing symptoms ( combined with having seen a euro ophthalmologist cos I feel like I can’t see),she is testing me for stiff person syndrome, ( I have none of the features) and auto immune antibodies plus encephalopathy and rarer forms of dystonia they could t test for when I was diagnosed. One of them is a newly discovered dystopia which precedes sleep disturbances which also concerned her as I can have narcolepsy type symptoms.

my question is- I am currently on 90mg baclofen, around 25mg diazepam ( low for me, I’m allowed up to 50mg a day) 10mg amitriptylene, 10mg solifenacin and buprenorphine which I’m trying not to take ( not had meds review for 3+ years). But could t my memory loss and cognitive issues ( which are reduced since cutting down amitriptylene be linked to 26 years on baclofen, up to 50mg diazepam, 60mg amitriptylene for 16 years, buprenorphine same time, up to 10 tablets (8 is maximum!) in 22 hours plus for several years I had pethidine then fentanyl too! Surely I’m a victim of my meds? Which I’m cutting myself ( except baclofen) instead I’m waiting for a brain scan, weird and wonderful blood tests, memory clinic, I live at neuro opthamology suddenly ( they can’t see anything or I’d be under the two week rule). I’m grateful for thoroughness, but if I had something sinister, would I still be alive at nearly 52? ,y memory has been getting worse, as has my sleeping for over 12 years, I did t tell her that, made it sound like it was new maybe….does this sound similar to anyone else? Literally every muscle in ,y body is affected except stomach, axial really bad, use wheelchair, but lately jaw, eyes ( Bleph but also the muscles in my eyes and iris spasm constantly) voice om and off, neck, arms. Oh and I have EDS too- that’s what seemed to trigger concern In new neuro….cN anyone empathise/ advise. Sorry long post, I have lost ability to précis amd if o read back I won’t remember what I’ve put so i précis it longer! TIA if you’re not asleep 😴

[crazycatlady55]

Hi. I have exactly the same type of Dystonia as you. I am 67 now. Symptoms started whe I was five. If you would like to have a chat you can contact me via Face Book messenger or call me on 07932953002. My name is Megan

[Ladybirdgirl]

I was an academic and taight for 10 years, I believe it is my meds which I always tried to be without. Sadly they couldn't spend just a bit more time to get the botox right. My research suggests chronic diazepam / amytriptaline use and for me anyway years of lack of exercise. But I dont know for sure, it is suggested it is depression, such a catch all these days.

[rankin1st in reply to Ladybirdgirl]

Hi it could be your meds you've got a lot going on. Bless you, but I noted that you have EDS also, I found that my menopause symptoms worsened especially the memory and poor sleep aspects, just a thought.....

[Ladybirdgirl in reply to rankin1st]

Hey lovely, I think you meant to reply to Maisie : ) I was a bit confused as coincidentaly I also have EDS. We are all so weird. I agree about hormone changes, which may be part of it but us wonderful ladies are all so different. I hsve ex colleagues still mentally smashing it in their 60s. I'd recommend a search through Dystonia Europe youtube channel and look up research by European consultants that do much more than we do here now. Sadly last gene panel I had was just for 5 types. There are 120 phenotypes (If I remember right lol) recognised as far as I remember spoken about during one of the European dystonia days (yearly conference). NHS won't check that extensively. It is terrible; hard enough to cope, let alone losing cognitive function.

[rankin1st in reply to Ladybirdgirl]

Thanks yes all strange but beautiful birds ☺️ will copy note to Maisie 😂 and check out the European site. Yes brain fog isn't easy for sure. Take care x

[Ladybirdgirl in reply to rankin1st]

You too, I love how us funny birds can all get a bit of suport here. Have a good week no1 Rankers!! 😊

[Mijmijkey74 in reply to Ladybirdgirl]

I have some of the same symptoms as the poster here. 5 years + with nhs doing various tests, many of them repetative tests/scans. Neurologist couldn't decide if essential tremor/ataxia/dystonia, back and forth I went, finally neurologist referred me on to a consultant above her, he did very little and said not dystonia but essential tremor. Neurologist discharged me this year without even seeing me for many months despite me having an appointment with her, she.just cancelled it, disgaurded me. That senior consultant was supposed to be sorting out medication for me, that was over 4 months ago, never been back in touch. I was in a coma in 2018, it took until this year to just get a referral to podiatry. They set about making special insoles for my shoes that I know won't heip at all, podiatry have sent those insoles out to me twice in the post now, wasting nhs resources and each time they have never arrived. Yet they claim posted out. Been on phone yet again with them today as someone was supposed to call me on Tuesday and dldn't bother. They have said someone will call me tomorrow I'm doubful that will happen, aand will result in me calling them yet again tomorrow before they shut for weekend. I have sleep issues, narcolepsy type issues, some of the symptoms of dystonia, whilst also struggling at night with insomnia until very late early hours, extreme fatigue that hits me out of nowhere, whole body aching as if hit by a truck, sleep that lasts briefly with me waking repeatedly and it isn't ever like I'm actually properly asleep, my brain is in some weird not quite sleep state with me aware but dropping and rising in and.out of that state. Not sure I do have essential tremor, but don't think it dystonia either, more fnd/fibro/ms/me type with some dystonic symptoms thrown in. My muscles are weak and my walking is drunk like and involves high pain, aching and a lot of discomfort along with tangled feet, stumbles, legs bucking but not going completely, can't feel ground under feet prroperly. Lots of stumbles and missteps, walking requires a lot of brain power to keep on witg the left/right reminder to legs, sometimes I just can't move as body so ceased up and aching so deeply, issues with swallowing, hard hitting dizzy spells as if be punched in side of head by a heavy weight boxer that are felt like a blow and take me off balance requiring me to grap hold of something so I don't fall, sometimes I get a feeling it is about to happen so able to stop and sit or lie down, those werid dos make my eyes visibly spin, unfortunately never had one in the presence of a doctor or specialist, my previous gp saw it, but they now retired se years ago, have sevvere asthma/eosinophilic asthma, had bi ventricular heart faiilure that went cardiologists told me, but damge left to left ventricle to what extent I don't know, but cardiology discharged me a few.years ago which is worrying as I don't believe or feel all is as ok with my heart/valves/ventricals as they believe. My pulse can soar up to 170+ then drop to 56bpm before rising and.dropping again when I'm sat still. It isn't persistantly that high, but does rise and drop dramatically, no physio for my walking offered to rebuild up muscle wastage, was having speech therapy for voice issues, but speech therapist left their job. Had new saw her, but she wasn't reliable or interested and didn't call when she said she would. Have vision issues, yet two in depth eye tests at opticians checking everything reveal no issues, but glasses for tiny tiny print, yet they don't help me enough to see, blurry vision, vision closing in on me black, but not completely, struggling to type now as vision blurry, eyes feel gritty, lots of visual distubances, black dot in vision that opthalmologist couldn't find cause of, thinks neuro related and to see neurologist about it, was going to discuss with neurologist but she cancelled my appointment without seeing me and discharged me, I must have bright day light lighting as feel I can't see otherwise, yet know I can see, but it is very distorted unbalanced vision, feel very unsteady in proorly or dimly lit places, find myself so off balance and feeling my way around at times and regularly holding onto things and not seeing things I know I should be seeing. Regularly bang/knock into things. Right this second having a weird heavy body light headed event as if about to pass out, and that happened because I changed my position from sitting to lying down. I feel completely failed by the nhs despite seeing so many nurses/doctors/specialists/consultants, nobody truly listens, cares, can be bothered. Only my gp surgery puts in the effort and has reprimanded my local hospital doctors previously for them failing me so much. I've had MRI/CT/Xray scans, electrodes on my head, nerve conduction studies, blood tests, respiratory tests, the list goes on, yet the head/brain scans they claim show no damage, and the nerve conduction studies came back normal or at least came back acceptable to them that doesn't mean they came back normal as I never got the results of those. The neurologist that I was seeing didn't rule out that there may be damage to my brain from lack of oxygen hypoxia, heart stopping briefly and rebooting itself, damage that is so small in my brain that the scans just can't pick it up, but it is there hidden and has significant impact upon me. I now feel that I have just been left with all these issues still that no resolve is being found for and they've just thrown in the towel, covid restrictions certainly impacted the care I received significantly. I now feel what's the point in going to any specialist/ consultant/doctor/nurse because they just don't care, and they're going to return results again like every other time saying they can't find anything wrong, and then try to imply it's all in my head, or it must be the menopause, or something like that, or psychological issues from my coma that have been disproved because I didn't have a bad experience in my coma at all, and saw someone to absolutely kick that assumption in the butt from these so called nhs professionals so full of assumptions and bs. I'm 48 and post menopause which they would know if they actually ever bothered to look at my medical history/file. So they can shove that assumption too where the sun doesn't shine! I have lost all faith in the nhs excluding icu from that.

[rankin1st]

Hi it could be your meds you've got a lot going on. Bless you, but I noted that you have EDS also, I found that my menopause symptoms worsened especially the memory and poor sleep aspects, just a thought....

[pepper7172]

I've been dealing with dystonia for 37 years. I definitely notice that after menopause my memory and cognition problems got worse. But I've always joked that dystonia meds shave 30 or so points off of my IQ. Coffee, at moderate doses, does seem to help. Be well and God Bless.

[Hidden]

My word and memory recall is very slow - but I do get there 😉