My father was diagnosed with Progressive Supranuclear Palsy (PSP) and unfortunately doctors, nurses and even most specialist don’t really know much about this illness and haven’t been much help when it comes to medication. As you may know PSP is usually mistaken for Parkinson’s Disease and the usual medication that’s given to its patients is for Parkinson’s with no real study if it even works. We have done countless research online to see how we can help our dad have a better quality of life. The disease is terminal where it slowly starts shutting down body functions targeting his mobility, swallowing, balance and so on. One thing that we have noticed is that he is not getting very much sleep throughout the night. He gets up anywhere from 6-15 times a night (last night 25+) to use the restroom, sometimes not even needing to use it. He has been checked for UTI's and everything comes back ok. These bathroom breaks take him anywhere between 30-45 minutes to get into the restroom and back to bed, so you can only imagine how much sleep he is actually getting. I strongly believe that the extreme lack of sleep is only adding to the progression of this terrible disease and causing him to feel extra tired, dizzy, and off balance causing him to have some falls. I found an article from UCSF that stated “If sleep could be improved, it is possible that the disease progression in PSP could be slowed.” I started to look into cannabis, read forums and testimonials on how it has helped patients with Parkinson’s. With PSP being compared so closely to Parkinson’s and some of its symptoms, I believe this route could strongly benefit my dad even if its just simply getting a good nights rest. I went into to a local Wellness store who suggested an 18:1 CBD-THC oil (administered orally) to help with sleep and a Freeze/Balm ointment for pain/inflammation to start. I purchased both and decided to give them a try myself last night before presenting it to my dad. I use cannabis myself for sleep but typically have a much higher THC content so I am not sure if my tolerance might just be higher. My father was complaining about some back pain last night and my mom massaged the freeze/balm on him, to my surprise he said he felt a lot better after and wanted a bit more (GREAT NEWS). I am hoping someone might have some suggestions to using the oils to regulate his sleeping better or other suggestions (I heard of using CBN as well). I know every person is different but maybe someones experience could help. Is the 18:1 a good start and will help towards aiding his sleeping? If so, is there a certain dosage (dropper) that I should start with? I know oils with a higher THC would probably help the sleeping better but I would hate for my dad to feel the effect of being high in anyway and just confuse him more. Anyone try the mixture of CBD:CBN? Any input, feedback, experiences would be extremely valuable to me.
Thank you so much for reading!
-Gus
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s1mplyGuS
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I know nothing about the effects of the cannibis oils on PSP. You did mention something you read about its effect with Parkinson's. Just to be clear while PSP and Parkinson's have similar symptoms they are 2 different issues within the brain. In layman's terms Parkinson's is a dopamine issue and PSP is a Tau protein issue.
Dad, CBD (not the oil but the sister disease to PSP), was up almost every hour on the hour throughout the night to urinate. This occurred mainly early and mid stage for him.
Personally I would ask his doctor before starting any self-medication routine.
Thank you so much for your reply! I am currently trying to gather as much information as possible from experiences that could possibly help my dad have a better quality of life and improve his sleep. I completely understand that PD and PSP are two different issues within the brain but was hopeful that someone could have some suggestions that helped with regulating sleep since they both have some similar symptoms.
May I ask if your dad used the restroom every hour he was up? Mine gets up frequently to use the restroom but doesn't always go.
Through my research I keep coming across 2 different medications that seem to be affective for sleep in PSP patients: Clonazepam & Trazodone. Don't know much about them but we messaged his doctor to hopefully get some additional info.
I can't tell you how grateful I am to come across these forums where people are sharing their experiences, tips, compassion and kind words to each other. Its times like these were people coming together can make such a huge difference in other peoples lives.
Any suggestions, experiences, feedback all welcomed!!! Thank you
Hi Gus, My husband is on Clonazepam and he sleeps about 7 hours straight now. Before treatment he experienced restless leg syndrome and whole body jerks/spasms. He used to have about one jerky episode every 15 minutes or so. I’m pleased to report that Clonazepam is working! I refer to Clonazepam as Xanax on steroids. We haven’t tried CBD-THC oils because the formulas don’t seem to be regulated and I am afraid of purchasing a bad strain. A wicked high of paranoia would be too much for me to handle so I shy away from it. His doctor wasn’t against trying CBD-THC oils, he just couldn’t recommend it. I’m not sure if this info is useful but I hope that you can find a solution.
Question... After taking the Clonazepam, does your husband seems drowsy during the day? My mother in law takes Melatonin, but she complains it does not help her during the night, but that it makes her sleepy during the day... she sleeps very little at night.
He was drowsy all of the time because he wasn’t sleeping well at night. Once he started Clonazepam and slept throughout the night his daytime drowsiness improved immensely. It took a couple of weeks for things to even out but he doesn’t sleep during the day as much as he did before. I hope this makes sense.
This is amazing news! Like I mentioned in the body of my post, I feel so deep in my heart that if we can help regulate his sleeping pattern and he got a good nights rest this could benefit him so much. Who wouldn't be drowsy, tired, off balance and falling if every night you didn't get the needed rest for your body to recover some? Especially when battling such a horrible disease.
Very good question and something I would like to know as well. We had my father try Melatonin 2 different nights and it seemed like he was up more frequent then if he wouldn't have taken anything. I actually get the same affect when taking Melatonin as well... it gives me the reverse affect and I feel a little groggy the next day.
Thank you so much for your reply! In my search through these forums I have been coming across a lot of suggestions around 2 medications for sleep in PSP patients: Clonazepam & Trazodone. I am so happy to hear this has worked for your husband. We have reached out to my fathers doctor for more information and in hopes of a prescription.
We are lucky that my dad is open to trying new methods that could help his condition. At the moment right now we are really trying to dial in how to regulate his sleep better. All of this info is so valuable to us!
Thank you for sharing your experience! I have also been looking into an external catheter for dad. We have a "duck" and a commode on standby in his room but he is a bit stubborn when it comes to the commode and refusing to use it. He gave the duck a try and it didn't go so well. The external catheter I been looking at is called a "condom catheter", pretty much a underwear piece that has a condom looking thing attached to it with a tube that runs to the catheter bag. I looked up the Coveen product you mentioned and this one looks beneficial as well.
We are waiting to hear back from his primary doctor to see if we can get a prescription for Clonazepam, fingers crossed!
We used CBD oil for my husband for anxiety and to help his appetite. He never had any problem with sleep so we weren't using it for that. He was incontinent so we used adult diapers when he was no longer able to use a bedside urinal. That kept him from getting up several times a night.
The CBD oil we used was about 20:1. Everyone's tolerance level is different and I don't think it is very well regulated so I would start with a very low dosage and work up from that. My husband's tolerance was very low so we only used 1 to 3 drops under his tongue in the morning. Occasionally, we would use it again late afternoon mostly for restlessness/anxiety.
It shouldn't hurt to try it. It won't make him "high". My husband experienced nausea on too high a dosage though. I doubt you will find anyone who will be able to tell you exactly how much to use or which one is best. Try the one you have and go from there. I have read about people who use a far higher dosage than we ever tried, but, again, I don't know if you can trust the labeling to be exactly what you get. We felt like it worked for the conditions we were using it for.
Thank you for sharing this information with me. I have been closely talking to the director of our local Wellness store. She has been amazing keeping me fully informed of the products and what could possibly help dad get some rest. I currently have the 18:1 on standby and tried it out myself to see how dad would feel if we decided to take that route. You are absolutely correct that the oil does not make you feel the euphoric high feeling do to it being CBD dominant with very little THC. We are lucky that my dad is open to trying new things to help out with his condition. All this feedback is so valuable to us.
If he is getting up that many times maybe he has prostate problems very common in men of our age. As Dads helper says ask the doctor. You may be wasting your money on drugs you don't need.
Thank you for your feedback! My father has had prostate issues in the past. What I find weird is that his frequent bathroom trips only happen when he is in bed and only though the night. If he is on the couch or it’s during the day, his trips to the rest room and normal. If it was his prostate, wouldn’t that affect him throughout the day as well? Not just simply over night when he’s laying in bed?
I can't respond to those questions as I'm not a doctor I am only going on experience of friends who had prostate problems seem to have them at night. I would contact my doctor as prostate tests are easily carried out and problems can be treated.
Thank you for your input! We have recently reach out to his primary doctor in hopes of getting more info and a prescription to either Clonazepam & Trazodone. We have received a few recommendations on those both to help with his sleep.
Amazing! So happy to hear people are finding some solutions to helping their loved ones get a good nights rest. I will talk to my local Wellness center about this combo(Sagitta) to gather some more info.
Thank you so much for sharring! I can't thank everyone enough for all this information!!
Gus - I lost my wife to PSP last November. Prior to her passing away we tryed cannabis in several forms candy, cookies, and various
levels of CBD and TNC. When I say we, my adult children were the so called experts with cannabis.
They swore by it saying they saw noticeable improvement in her behavior. Personally, I didn't see it. Maybe I was to close to the situation. The only thing I can tell you is it certainly is not going to hurt using it. Also, if it gives you any emotional relief then use it. It could give your Mom an emotional boost also.
I couldn't agree with you more! My mother has been an angel refusing to ever leave his side. They are extremely religious so making a decision like CBD would be huge for the both of them. But I know if there is any hope it could help my dad in anyway, even 1 nights rest, they would do anything for it.
May I ask what TNC is? Is that a type of cannabis.
Sleep disturbances are part and parcel to PSP. I'm on clonazepam for restless legs and to aid in sleep. For the most part it helps me - I have no problem falling asleep... it's staying asleep that is the issue for me. You might consider some lavender oil in an infuser and some soft spa-like music in the background.
Thank you for sharing your experience! We are currently waiting to see if we can get a prescription of either Clonazepam or Trazodone for dad. Seems like these 2 have been the most common. It gives me hope that there is a little light at the end of the tunnel that could possibly help him get a good nights rest.
We got him a humidifier/purifier over the weekend with some essential oils to add. Last night I added a mixture of Lavender and Eucalyptus, HE LOVED IT!!!
My husband’s neurologist prescribed quetiapine (12.5 to 50 mg at bedtime, and it has helped him sleep much better as well as reduced his restlessness during the day. No side effects noted.
Thank you for your reply! I haven't heard of Quetiapine, I will have to definitely look into this one to gather more info. Thank you so much for the info.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I am sending you our particular experiences on PSP-RS that we hope you can find useful.
I am not a phisicyan. The information I am sending you through this private mail is a compilation of our own experiences during 7,5 years and also of the people who participate in the PSP chat. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.
Sorry it took me so long to reply. I wanted to make sure I read through the entire private message you sent first.
Wow! I am speechless..... Words can’t even begin to express how grateful I am for all the valuable information you have provided my family and I. I am truly amazed by all the love and support shown on this forum to everyone battling through such a tough time. It’s amazing how coming together, sharing each other’s experiences and making recommendations can benefit so many patients in their battle with PSP.
Luis, from the bottom of my heart I want to say thank you! Thank you for taking the time to put all this valuable information together and being so open to sharing it with those who are confused about PSP and looking for some guidance on how to help their loved ones.
This is more information then we have ever received from anyone and truly a guide to better understand and help our dad.
Thank you once again Luis and I hope we can keep in touch.
Thank you for your suggestion! May I ask what sheaths are? I tried to google them but wasn’t successful in finding anything that seems to tie in. Would you happen to have a link or a search I can make?
Again, thank you for your input! All suggestions, tips, experiences are all welcomed and so valuable to my family.
Sheaths are like a condom that goes on penis theres a pipe attached and a bag their easy to put on and stops them getting wet and keep moving for the toilet their also called convies a incontinence nurse comes out to get the correct size. I hope this info helps.
My mother in law takes Trazodone, Buspirone, Melatonin and even CBD oil. I think her PSP is advancing rapidly, since now it is becoming more difficult for us to understand her when she speaks - and I think she notices it, and frustrates her. She barely walks now, and needs 24/7 care.
We even find ourselves talking to her as she was 4 years old... Had it happened to you?
Thank you for the information. I am so sorry to hear about your moms condition. This is such a terrible disease and difficult time for anyone going through this journey. Your mother in law is so lucky to have you around to care for her and make her feel as comfortable as possible. This forum has been such a blessing for my family and I with so much support, compassion and feedback to help with such a tough time in our lives.
We too find ourselves babying dad as this disease progresses. Although I am sure dad would much rather do things on his own at least he knows that we are there every step of the way with him for anything he needs. You are a blessing for your mother in law. Keep doing what you Cayabrewer and hang in there.
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