Increase in Delusion and hallucinations

[youcanwin]

Going through tough times hallucinations and delusion are very challenging for my wife. Giving her medicine and food too at times become a big task. Dr has changed and stopped some medicine i.e perimpexole, selegline. Reduced dose of resigeline over last two weeks . Any suggestions from anyone experience is welcome. Dr has stated that she is down with Multiple system Atrophy Parkinson.

[chartist]

Dr. Costantini said that he had some success using very high dose vitamin B1 in some of his MSA patients. B1 (Thiamine Hydrochloride) has a good safety profile.

Art

[park_bear in reply to chartist]

Links:

highdosethiamine.org/

healthunlocked.com/cure-par...

[parkie13]

Please try Melatonin at 5mg - 10mg before bedtime. Melatonin supposedly helps hallucinations.

[keri10]

I found Quetiapine (Seroquel) helped my mom. Her worst hallucinations/delusions were at night and she wasn't sleeping.

[Dragona in reply to keri10]

That is good my dad tried it and it made him so agressive and angry

[keri10 in reply to Dragona]

ugh 😔 Have you found anything that helps?

[daughter-Advocate in reply to keri10]

is your mom still using seroquel? which dosage? my dad is on 25mg for 3 weeks and it seemed to help the first 2 days, but afterwards, hallucinations are still around everyday. upping the dose to 50mg gives him sudden and immediate numbness down his leg so now he's continuously restless

[Hidden]

My HWP also had delusions/hallucinations which can also go with Parkinson’s. We tried everything even the seroquel and only gave him a half pill at night. What is basically does was put him to sleep which I’m sure you don’t want during the day. Try reading up on Capgras Sydrome. It’s an interesting read and I feel for you. No easy solution to this.

[youcanwin in reply to Hidden]

Thank you for sharing your experience. Will go through the suggested references

[LeharLover62]

Hubby has dopamine induced psychosis and hallucinations from suspected Parkinson’s with Lewy Body (but they can’t rule out MSA.) Too much dopamine of any kind causes hallucination, too little and he can’t move and sleeps all day.

Here are the paths we’ve been down and it’s not easy, but he has minimal hallucinations presently.

The first path was reducing and removing all medications systematically other than levodopa. This process took months, but he was stable on Rytary (ldopa) only for a year and a half. He had to reduce his Rytary dosage, which made his movement worse. He then added high dose thiamine and mementine. This helped his cognition and movement and balance without triggering hallucinations. He was stable on this for a year.

Then I decided to try mannitol with him and it helped him a lot at first. But over six months he could no longer tolerate any dopamine meds without hallucinations. He had to stop all meds including mannitol.

Over the last year, his new neurologist has gradually been rotating super low doses a few weeks at a time of each med to see what he can take without hallucination.( axilect amantidine neupro Macuna etc) He also added Exelon patch, low dose lithium orotate, and I forgot to mention he’s been on melotonin for a couple of years. He currently tolerates a very low dose of Macuna pruriens well and uses that for his dopamine.

So he is currently stable on Exelon, Effexor, mementine, lithium orotate, Macuna pruriens and melotonin.

It’s really really hard to manage. And I’m pretty sure he’ll need seroquel or nuplazid pretty soon. But you may be able to get a regime that works for awhile without the antipsychotics.

Also I try not to stress him as this triggers the hallucinations. Find the triggers and find ways to work through them with deep breathing, taking a drink or snack listening to music or whatever is calming.

In the worst scenarios, I give poor hubby a melotonin gummy, and that will usually put him to sleep 20-40 minutes into a psychotic or hallucination attack.

Anyway it’s a lot, just try to keep her safe!

[youcanwin in reply to LeharLover62]

Thank you for sharing a valuable practical guidelines. Will be trying your ways . stay blessed and may you continue to have a good time with your lovely husband. Regards