We have spoke previously before in regards to Deep brain stimulation…Neuroligist said not at the moment, and maybe in the future. My mum does have the option but I feel like its too much for her to go through and I personally don’t think she likes the idea of it…
In regards to CBD Oil, my mum has taken a few off different names, different Mgs and %.
The best way to take these oils is to spray it in your mouth or droplets under the tongue. Let it settle for a 2/3 mins instructions on the bottle and there you go.
How is this oil helping you? My mum ready feels very hot and the cbd oil we gave her was also mixed with normal virgin oil what makes her feel very hot. She not taking any cbd at the moment.
When I get home tonight ill take some pictures of the oils my mum has used.
Hi, Sasha, thanks for responding. What i’m on is a 3% strength oil and had been doing 2 sprays 3 times a day. As I said in my earlier post it did seem to help with my getting to sleep but not with my tremor. I upped the dose on Monday to 4 sprays in the morning and the same an hour before bed but still no impact on the tremor but I was experiencing pain in my left side of my waist and whether it was the oil or not I don’t know but it does seem to have gone off. I will know more when the bottle runs out, if so then my next bottle I will go to 6% and try 2 sprays morning and night and see if that helps. As I said in my earlier post the oil i’m using is called Natures Oil and comes through ICE Headshop.
I have got an appointment(annual check up) with my Neurologist on Tuesday to see where we go from there. Since having the battery changed my Dystonic Tremor is more prominent and I have upped both settings by half a point but don’t want to totally mess it up by going too high.
Regarding DBS, it is a scary thought and very daunting but well worth it in the end so long as you don’t have another tremor like me !! Also that your Consultant listens to what you’re saying !! We intend doing some dictation to my Neuro man so as what we are saying goes on my record as not only is the Dystonic Tremor very much in evidence I am shuffling more when I walk and my speech is not what it could be, thank goodness for keyboards !! I will get back to you after Tuesday. Have a great weekend.
Hi again Sasha, I went to see my Neurologist yesterday and said about using CBD Oil and he was fine and told him that I had been using it but that it wasn’t helping with the tremor. With that in mind i’ve not bought any more. Having told him of my problems he suggested that rather than go all the way back to Cambridge to get another opinion he is going to try and get me back into Bristol where Dr Whoan is located to see if his team can offer up some help with my condition as I am resident in the South West. In the meantime he has upped my daily dose of Madopar to 1250mg(5 x 250mg) a day to see if there is any improvement. He said he wouldn’t make anymore adjustment on my DBS. He did suggest trying a low dose of Tryhexyphenidryl which as we pointed out to him we believed that this was the one that sent me off the rails before but we said that we would contact him when we were able to confirm this.
Thank you for responding back to me. Its good you told your neurologist about CBD oil at least they know you was trying something different.
How do you feel with the increase of you madopar? I think my mum is taking it 5 times a day atm. Everyone body and Parkinson’s is different at different stages. I will do some more research into DBS because I remember the first time we spoke you mentioned if it wasn’t for DBS you wouldn’t be clicking away on these keyboards!
Its been a pleasure speaking with you, I wish you all the best in the future.
Sasha, as i’ve only been on the higher dose of Madopar for just a week it is early days yet but will let you know if there is any significant difference. As you say, everyone who has Parkinson’s is different in many ways, very few are the same. Regarding DBS, it is good to do research for your own peace of mind(I had mine done at Addenbrookes Hospital, Cambridge under Mr Colin Watts, Neurosurgeon. Dr Philip Buttery was my Consultant). I was given a four page Information sheet to read produced by Parkinsons Disease Society. Before my operation the procedure was shown on tv and I was determined to watch it !! My wife said,“Are you sure ?”, I said,“Yes.” I did watch it on two separate occasions, different people, I believe one was in USA !! Remember, I had two tremors, the Dystonic which has been about me since my teens and the Parky one. Come the day before the operation as I was waiting to be admitted, the scaryness/daunting of it all hit home and I did break down in front of my wife. Come the operation I needn’t have stressed so as when it happened I didn’t know anything about it, if anything I was feeling gung ho and positive in attitude on the day. The DBS has helped no end with Parky in fact after the operation I was a different person, no longer was I wobbling like a jelly !! DBS has given me some sort of life back,
Six years on and having had the battery changed(March 2018) and am now under the control of an i - pod but back in January I noticed that a tremor was back in my hands which is one reason for seeing my Neuro Man. I now need for the Dystonic side to be sorted. Take good care of yourself, you know where to find me should you need to talk further !! All the best.
Having seen my Neuro man he has suggested a couple of drugs, one of which I have had that being Trihexiphenidyl which sent me right off the rails !! I wasn’t the same person so I am trying Clonazepam and these appear to make me drowsy, I have only taken two in two days and will continuue to do so for the next fortnight when i am supposed to go up to three a day. Whether or not they help with my Dystonic we will see.
@Lindy In an earlier post I said I tried CBD Oil having started on two sprays under the tongue twice a day then rising to 4 sprays none worked. If you have received the latest communication from Parkinsons it talks extensively about CBD and the proposed Trial so may be worth your while having a look.
Also in another post I talked about my Madopar having been increased to 1250mg per day but so far there’s no improvement. As for the Clonazepam, I was on it two days and it had bad side effects on me and so I was taken off it straight away. It made me very drousy and my speech became more slurred and it left me confused and disorientated.
Hi cruisecontroller, so you have been through the mill in trying other drugs. Is Madopar all the meds you take for Parky’s, if that’s so, how long have you been diagnosed. I was diagnosed in 2011 but had symptoms in 2010, have been on the same meds from the start which is Ropinirole XL then added Sinimet plus earlier in the year and I have been fine with this combo!
Hi @sheffy, I was officially diagnosed, like your good self in 2011 but had tremors or nerves from my teens as it was in them days. The nerves got worse in my 50s and was diagnosed with Essential, then Dystonic Tremor. In 2013 because I had tried all manner of medications to help I was put forward as a candidate for DBS. We had told the Consultant that I had got two tremors, the Parky and the Dystonic, did they listen ? Did they heck and they realized after fitting the DBS that I still had a tremor. The DBS controls the Parky side but not the Dystonic but would have done had they listened to us !!
Yes, Madopar is all I take(5 x 250mg a day having recently gone up from 4 to try to help with Dystonic), my battery was changed as it was coming up for expiry in 2018. I went from what I would call a normal controller to an i pod, the downside with the i pod is that i’m forever charging it up whereas with the other one I just put batteries in and off I went(I have a St Jude DBS system fitted) !!
I recently tried Clonazepam to help with the Dystonic but came off it after two days as it sent me doolally !! There was another drug mentioned but we told the Neurologist that it also sent me off the rails and I turned into a monster, I just wasn’t the same person. I am waiting for responses from South Mead Hospital, Bristol to see if they can help with my problem as when I was referred to them when I moved to the South West they refused to change my battery and referred me back to Addenbrookes Hospital, Cambridge where I originally had it fitted. This meant my driving up there and back(I live in Devon, five and a half hours journey). About the only solution would be to go under and have my DBS altered which in the first place was a seven hour operation but having gone through it once I am loathe to do it again for fear of something going wrong and I end up like a cabbage !! I am in no doubt that this would mean my going back to Cambridge for obvious reasons. In the mean time we sit and we wait.
I have been taking water soluble cbd for 2 years as have a lot of people i know, still working. Mainly helps depression and anxiety, didn’t do anything for Parkinson’s though. I did a lot of research and checked out a lot of suppliers. most if not all water soluble cbd is made by a company called ‘dutch natural healing’ the cheapest price from a company who rebadges theirs is ‘simplycbd’, £10 cheaper than others.
Some of the things i have elarnt on the way with cbd:
I take six drops 2 times a day well spread out, if you take too much it actually has a reverse effect to what you want. for me this means pannic attacks and heavy depression.
allow 90 minutes to 2 hours before and after taking cbd for any other meds- this is because cbd hogs the liver enzymes which absorb cbd and most of our medications, meaning that meds taken inside that time barrier may not be absorbed into your system
oil cbd versus water soluble cbd - water soluble cbd is 90% absorbed by your body whereas oil is nearer 30% as it is difficult to break down. therefore you should be able to take less water soluble and get same effect as oil
CBD does not work like other meds, it works on your homeostasis, so whatever is the most pressing issue is in your ‘body balance’ it tends to help with that. Thats why it helps a lot of different ailments
Don’t know what your problem with your ankle is /was but my husband had a reaction to tablets the neurologist prescribed and thought he had damaged a tendon. Ankle swelled and he could not walk on it. Took nearly 3 months to find out it was a side effect of the latest tablets and to get them out of his system. He is still having problems because he was not able to walk for so long.
