I received Provocan CBD oil with great anticipation. I weaned Dan off of his morning daily dose of Carb/ levodopa. Although we never saw much change with this med, at this small dose the neck rigidity seemed its best . (But So hard to know for sure.) For two days his legs buckled in the morning. Was it the lack of his morning carb/levodopa? Not sure.
The next day I began with 6 drops ( reccommended basic dose ) of CBD oil. This looks like only about 1/3 of a teaspoon. He was out of it most of the day. I’m uncertain if it did anything else cognitively, as he was so sleepy.
I put him back on his morning carb/levodopa and it did seem to help his legs to not collapse so quickly . Now I question how to restart with a smaller dose of CBD oil. I do a friend who is a pharmacist who may be a good resource .
Yesterday I had two of our children come to be with Dan so I could attend a baby shower. He woke with a fever. I filled him with fluids and his temperature went back to normal. I left home for a short time ( did not stay long at the shower) . When I changed his pad after 4 hours it was nearly dry. Last night the fever returned. We had been pushing fluids all day. With the apathy, tiredness etc. I had a hard time getting more fluid into him last night. I worry this is the way it will be as the disease progresses. He just bites the straw. He also brings food to his mouth and does not bite it. He does best in the morning .
This disease has me so anxious, worried, frustrated, and afraid.I try hard yet constantly feeling defeated. I will see what today brings. I feel blessed to now have a home healthcare nurse to call. Thank you all for taking time out of your busy day to read my rant. I hope you all have a great week.
Karyn
Written by
Karynleitner
To view profiles and participate in discussions please or .
Karyn you are going through a very tough time. You are not ranting you are just rightfully concerned for your husband. What you describe is typical of PSP. I have no idea how to go back on his official med. I would ask your pharmacist friend if I were you.
My husband's legs gave way a few months before he died and it was from pneumonia! Like you I thought it was the progression of PSP. Anyway he ended up in hospital on intravenous antibiotic. He was over it in a few days. However he did go down after this. Anything which happens seems to drag them down.
Be careful you don't give him too much water by the way as his kidneys may not be able to cope. I would ring the doctor if I were you.
Thank you . Strength is what we both need. I pray that he feels peaceful and loved and that I have continued strength and a positive and loving attitude for not only Dan, but for our children. They are suffering too.
My Mum has CBD not PSP and she has these fevers of no known cause. Nothing showing up on tests as infections. She had this for about 6 months and was vomiting with it too. Touch wood for two weeks her temp has stayed normal, now she is cold all the time.
Hello Karyn. I am usually just a reader but decided to answer your post to help if I can. My mum has CBD and I had been following the posts on CBD oil with interest. I also decided to order the Provocan after reading Kevin's posts and also because it was in a spray. However when it came it was drops I checked with the company and they said to give her 2 drops working up to four. I was very worried about this as I wasn't sure how I would get mum to lift her tongue so I asked them to send me a spray top, which they did, unfortunately I found this even more difficult as it still needed to be sprayed under the tongue and mum wouldn't cooperate. I then tried the dropper and for two days this was a great. Mum was very calm, smiling and speaking in sentences. Day three feeling confident giving her the drops she put her mouth round the dropper like a straw as I was squeezing and when I managed to get it out of her mouth she had sucked the lot. All I can say is that she wasn't herself for the rest of the day. She couldn't stay awake, couldn't walk assisted and when I woke her to change her pad in the early hours I honestly thought that she had, had a stroke. She couldn't speak at all and her mouth was drooped to one side. However the next morning she was a lot brighter. Was this the effect of too much CBD oil? I think so because I didn't give her any for two days and then tried again this time using a tiny spoon which I put 2 drops on and then I slipped it easily under her tongue. I have been doing this for over a week now and I have certainly seen the benefits especially with her speech and being more alert during the day even responding to TV programmes. I don't know whether this has helped at all Karyn but I guess what I am trying to say is that 6 drops does seem a lot especially to start with. Its all such a worry isn't it I understand feeling anxious and afraid. I feel totally overwhelmed at times and wonder how long I can cope
Thank you for your reply. I was very helpful. If I get an all clear with the carb/levodopa , I will start slow as you suggested. Do you give it to your mum once a day.? Morning ?
I’m so thankful to you for your help. I’m glad the CBD oil is working for you. Our biggest wish was that it provided Dan with the will and ability to communicate a bit.
Sending a big hug back to you. We can all sure use a few extra hugs.
The problem with CBD oil is there is no 'one dose fits all'.
Start low and increase the dose until it starts becoming less effective. Too much and the effectiveness starts to reduce. I would not exceed 12mg twice daily.
Liz has 6mg once daily, because I only see her once a day. A dose every 12 hours would be better.
The main effect on her is a sense of being calm and relaxed. No sedation.
Thanks Kevin. Dan is a big guy, thus I though a beginning dose of 5-6 drops was OK, obviously not. It did relax him. I will try again with 3 drops, but I am unsure about giving with his morning carb/lev. Perhaps I can give it several hours later.
Is it true that the effectiveness may increase over time? I am consistently trying to find a way to reduce the inflammation in his brain. The apathy can be a huge problem. Some days are OK. I think somedays he just zones out. He recently sat through an exam from a psychologist and did not react at all until she asked him how he really felt. He said “terrible”. The only word he said in 3 days. She is considering putting him on an anti-depressant, but us unsure if the effectiveness . I worry because he cannot tell us if it makes him feel worse. He had his arm caught yesterday. I was right there and he made no sound . When I got it out, he cried. The world of silence is the worst.
Thanks. I may you have a beautiful, peaceful visit with Liz.
That arm getting caught must have been a huge heart wrench for you.
Yes, start low and build the dose slowly. Increase it slightly weekly. Lower it slightly if you see a fall in efficacy, or start having negative effects.
If Dan is loosing weight don't forget to lower the dose a little over time.
I don't think the effectiveness increases over time. It's not cumulative and it does not repair or heal as far as I know.
As for anti-depressants. An SSRI type can take the edge off things and after adjusting to them they should not be sedative. However the emotionally flat presentation comes from the illness and medics can often confuse it with depression. It looks the same. Finally folk are bound to be a bit low in mood faced with such an illness.
Is he able to communicate by thumbs up or down or something. You could ask him questions about the CBD oil and he could give you feedback.
It assists with the dopamine in the muscle nerves and brain. From reading the person might feel better in themselves, their muscles are less stiff and any shaking might diminish.
I was quite anxious when I first gave CBD to Liz, but through hand squeezes she was able to say it makes me feel better and I want to take it.
Hi Karyn. Yes I give mum 2 drops daily after her breakfast in the hope that she will leave it under her tongue to absorb the oil for as long as she can. She usually goes to sleep after breakfast for an hour so its a good time for her.
I do hope that you can try it again and that it helps Dan with his communication .
Hi, first of all sorry for all this, it's really tough - a couple of things, the fever may be due to a chest infection, there may be some food inhalation in the lungs, this can happen with normal eating or a PEG too - also plz check for bed sores - secondly, it's different for every patient but my carbidopa/levodpoa suited my dad a lot - when his doctor stopped it suddenly, he just became really stiff - resuming it 40 days later brought back his ability to talk and eat - a too high dosage of this med can also cause leg spasms but starting again with small doses (1/4 of the 25/100 pill.. I think it was twice a day) suited him
This is an unbelievably tough disease to manage - best wishes for yourself and Dan
Thank you. Dan does eat regular food. He is just beginning to cough from time to time with a straw. We have a swallow study coming up. I struggle to get fluid into him and worry what will happen when food is thickened.
Dan did have pressure sores when in hospital . I do my best to keep his skin clear, but it can be a struggle.
You are most welcome - I read about a special kind of straw that helps people with swallowing problems, please check for those as well
To help avoid pressure sores in the future, please see the possibility of using an air mattress, though for some patients the patient still needs to be helped turn over every 2 hours
Hi sorry you are both experiencing this but if there is no infection present anywhere it could be the PSP progressing, as it interferes with the body’s ability to regulate temperature, amongst a whole host of other seemingly random symptoms, unfortunately. Ruth x
We recently started CBD oil twice daily, morning before getting out of bed and night when going to bed. Night dose was stopped when we found that he was less able to get to sleep and now give him both doses in the AM. There seems to be an improvement and more wakefulness during the day. (although he still sleeps immediately after breakfast after having been up for two or 3 hours).
Based on what I've read here, I will administer following breakfast when Chris might be able to keep the oil under his tongue longer - perhaps even while sleeping (although I hope he doesn't just leak it out with his excessive drool).
I found it very difficult to place drops under his tongue. Chris doesn't have the ability to lift tongue. I use a spoon to move tongue back and pour drops from another spoon. I sweep the spoon with oil over tongue to get all into his mouth. I tried a syringe (no needle) but was losing a few drops with each application.
Regarding fevers, Chris has recently been waking with rosy cheeks and feels hot to the touch. He insists he wants to keep his covers and doesn't feel too hot. I thought on several occasions he had a fever and in fact his temperature was a degree over his normal. He often feels chilled when I feel warm. I suspect temperature regulation may be a PSP issue. He has no infections and the temperatures fluctuate, i.e. drop when he begins moving about preparing for the day.
On two occasions he has had UTIs, one brought on by straight catheterizing another by who knows what. To prevent UTIs, Chris' fluid intake is high. Much of his daily vegetables are taken in the form of a vege smoothie drink (28 to 30 ounces). 2 cups greens, 2 carrots, 1 or 2 celery stalks (all organic) and enough apple juice to make it easy to drink. Every meal he gets about 12 ounces all thickened to honey to pudding thickness. Without the drink, his ground food is difficult to swallow (he chokes). Another "drink" is with his daily dose of a laxative -- Miralax (powdered laxative) thins apple sauce to a consistency that he can swallow as a drink (I was using so much ThickIt with apple juice and Miralax that I switched to applesauce!
Karyn, thank you for your post. I feel inspired to re-introduce Carba Dopa Leva Dopa. Like many PSP patients, Chris did not respond to it early on. Perhaps it will help now with his severe stiffness.
I so appreciate this site. All this trial and error shared among other caregivers is a tremendous help to me.
Thanks for your reply . Can you please tell me how much fluid you would estimate Chris gets each day? In observing Dan carefully, I do feel both his UTIs and fevers are related to fluid intake. I try to push fluids, but am never certain what the goal should be. Also, does he drink it on his own? Special cup, straw? Dan is just beginning to cough sometimes when he drinks. This seems to be one of the last symptoms for him. He is totally incontinent, says 3 words on a good day, and is a two person transfer.
We have tried many doseages of the carb/lev. We have stopped it and restarted a few times. We never saw much improvement , so figured it didn’t do anything . At one point, with his highest dose, it almost seemed to worsen rigidity in his neck. When we went to Mayo, the doctor mentioned it often helps keep rigidity down, I was exspecting more. . At one point he had a hard time holding up his head when he was tired. For the past month it’s better . (Carbidopa / levodopa only in the morning). I tried a day or two without this med and did not notice a difference, so discontinued. I wanted to try CBD oil without any other meds. After a day, we noticed more rigidity in the AM on transfers. Also, some neck stiffness again. This continued for a few days, We put him back on the morning dose and it is better. It is a subtle difference, but makes a difference with morning transfer. With PSP, I certainly realize this could all be the disease. I just keep observing and trying.
Thanks So much for your input . Any suggestions are appreciated. . You sound like you are dealing with an overwhelmingly tough situation. I hope you have a strong and peaceful week.
I try to provide 60 to 70 ounces each day but sometimes miss. I also try to stop fluids by evening 8:00 PM. C. takes medications for prostate and bladder issues. He holds his urine until morning with the aid of one of his meds but is incontinent. At least he doesn't need changing during the night with the meds. and I no longer have to deal with his attempting to get up for the toilet during the night. Those days are long gone, thank God! I used to be exhausted with getting up to help or to "catch" (hand held urinal) in order to prevent him falling. --Several broken pieces of furniture and a patch in the drywall are the only reminders of his old efforts.
We used to use a wide straw for drinking but C. is no longer able to suck the thicker liquids through the straw. With Thick It at nearly pudding consistency, it's easier to hold the cup to his mouth and he sips it. The thickness depends upon what type of food he is eating with it.
As for UTIs, cranberry pills taken as a prevention are something recommended for women who suffer UTIs. I wonder if that might work for men as well. Another is Purity by Body Anew a medication taken under the tongue. Unfortunately it is alcohol based. Truth is, I had a handful of UTIs related to a medication I was taking and an alternative minded doctor recommended them for me. I haven't had a problem since taking them myself. Also, constipation can cause UTIs. Weird, right? All these toileting issues! We've been using Miralax daily to address chronic constipation following an ER visit for severe diarrhea which was actually caused by constipation. We just gotta help keep things moving!
One of the sayings that was often said at a caregiver's support group I attend is to expect the unexpected. Just when I think I've got things under wraps, something changes!
I had a bit of a chuckle reading about your broken furniture and dry wall. Not funny, but So familiar. We have 4 places where dry wall is damaged, as well as broken furniture and closet and cabinet doors. He just lost his balance and I could not stop the fall. Thank goodness he never got seriously hurt. I agree, as sad as it is that he cannot walk, thank goodness we are not dealing with that every day.
Dan has had problems with constripation in the past , but is pretty good now. I would imagine that amount of thickened liquid is difficult to get into him. I am concerned about that. I believe they will reccommend Dan have thicker liquids after his swallow study . This is all just awful.
Thanks again. Your reply is very helpful. Best of luck to you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
CBD
Progress in PSP patient after 3 weeks of CBD oil
CBD
CBD - Is this the end?
Swallowing help pls...CBD
