My mother in law was diagnosed with MSA with parkinsonism in june. She'd been having problems for a while, most notably anxiety and sensory processing issues as far back as last year. But she could have had subtle signs prior to that.
She suffers from hallucinations, cant deal with noise, touch, too much light. Are these common issues? Or should we be seeing a dementia specialist also?
Medical progress is very slow in these parts, we've had to arrange carers to help my father in law because everything takes far too long
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GP1988
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The hallucinations are a big red flag for Lewy Body Dementia. I would get a second opinion. (I know, easier said than done! It took years to get our first opinion.) Best wishes, Ruffner
Cheers. At first we thought it was a side affect from one of the mobility drugs, changed the drug mobility improved and haluncinations lessened but not gone. Can you lewy body andand MSA? Can one cause the other? Intially we thought it was parkinsons and anxiety until she stopped being able to walk. Ill pass it on many thanks
Hello yes my dad had some issues. Yes, sometimes hallucinations can be caused by medication side effects. They can also be caused as a result of REM sleep disorder in MSA. In this case it's called hypnagogic hallucinations. (Basically the brain not getting enough oxygen at night so it's sort of dreaming during the day.)
People can also get visual disturbance with MSA so for example floating shapes or colours which my dad also had. I'm guessing that's due to the effect of the condition on the brain.
The best way to tell which it is, is to note exactly what she sees and when it happens. One of the MSA trust nurses or your neurologist might be able to guess which one it is by how you describe it
Kx
I meant to say yes the condition can also affect people's light sensitivity - it makes people more sensitive to light.
At one point when he had carers he found it difficult to have too many people touching him at the same time, ie: too many points of contact, it must have been too much for his sensory processing. Dad also went through a stage where his attention was particularly drawn to really small things in the room, like a fly buzzing. just brain stuff I guess, there maybe a fact sheet somewhere on the website about eyes.
I have a lot of visual disturbances. I have been a migraine sufferer throughout my adult life. My visual disturbances are very much like migraine aura.
I am very sensitive to light. I wear sunglasses everywhere I go, which often accompany a hat for added protection. I find that too much light or color affects my balance.
I have also become very sensitive to sound and touch but these are more intermittent for me.
I find it difficult if things change too quickly around me. I can’t process what is happening quickly enough to feel comfortable. Any sudden or unexpected sounds, touch or movement around me is challenging. Crowds are intolerable.
I am interested in knowing more about the hallucinations, if you feel you can share more about them.
My questions would be related to frequency, duration and any noticeable triggers ie; time of day, weather, foods, any situation or commonalities amongst the hallucinations?
thanks for your reply. If I may ask what is meant by visual disturbances?
she is very sensitive to touch, light and noise also but not quiet as much as yourself.
her haluncinations vry. Sometimes she wakes up screaming she is on a boat, others that the boat sank and my father in law let people drown.
others in the middle of the day, shouting about demons but can't describe them.
She also gets 'zapped' while sleeping in her hospital bed cos she can't manage the stairs. We put that one down neuropathy.
her main trigger is going home or waking up, she wakes up upto 9 times a . We take her out 4 days a week but going home after seems to trigger her. They have lessened somewhat due to new medication/she realises she is only haluncinating
I have blepharospasm. It shows up when I get very tired or very anxious. It feels as if the muscles under my eyes are rapidly twitching. It makes my vision blurry.
I have abnormal eye saccades. My right eye moves at twice the velocity as my left eye and overshoots the target before coming back to focus.
I have many eye floaters which is like having a lot of bird droppings on your wind screen. You can still see out but there are obstructions. They are different shapes and sizes and I keep getting more. When I try to focus on them, they move with the eye.
I have bright colorful rings of light or cloudy, blank spaces that will show up and live with me for a few hours. These can be bad enough that I can’t function because they impair my vision so dramatically. The rings seem real. The empty spaces make me feel I’m going blind.
Thank you for describing your mother in law’s hallucinations.
I experience similar sleeping problems. I often scream in my sleep and have fallen out of bed etc. This often happens as I am waking. I haven’t experienced this during the day.
I used to have very vivid dreams. So much so that I could not shake the feeling that my dreams were real. Sometimes I would believe it for days though I didn’t share that information.
My doctor prescribed Prozasin. I still behave the same in my sleep but when I’m fully awake I understand that it was just a dream.
I suggest experimenting with different ways of calming her during or after an episode. Find a way of expressing that she is safe. Try getting her to focus on your face.
Obviously as a carer you are startled, shaken and concerned so you need to be a bit of an actress here. If she is like me, she senses your distress and it feels more reasonable that the dream/hallucination is real. When she is shouting, try whispering or speaking very softly.
If you can safely touch her she may also be comforted by a gentle hand. It made all the difference in the world for me.
I can’t help but wonder if there is a way to prevent some of them during the day. Perhaps knowing she is triggered by coming back home consider something to calm and distract her. Music, games, books, conversation, massage, meds? Just a desperate thought.
I’m so sorry you’re having to live with this frightening disorder. Of all of my symptoms, I find this the most distressing. I have tried everything I could. I cannot control this. Being shown love in the midst of it is the only way I live with myself.
thank you for being so honest about your struggles. I really admire the fact everyone can talk so openly to support one another. Things just seem to be getting more difficult, the lack of support from professionals (the local hospice has been helping deal with things like 'power of attorney'and attendance allowance for several months and nothing has come of anything) and my father in law seems to be burying his head in the sand still.
Hello, I’m sorry to hear of the difficulties being experienced, 2 of my friends in their 50’s and 60’s have MSA, it’s a cruel disease.
I wanted to add this condition to consider, not linked to MSA but important to be aware of it.
My Mum has mild dementia with Alzheimer’s, she experienced visual hallucinations, the patterns on her pyjamas moved and then when outside she would see pink flowers in a shrub, I assumed it was linked to her dementia, however it only affected her left side. I took her for an eye test and wet macular degeneration was diagnosed, unfortunately it was quite advanced, she’s having injections to help.
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