FND will CBD oil help?

[AjaStar]

Has anyone here taken CBD oil to help with their symptoms and if so which symptoms do they help? I want something to help my functional weakness and slurred speech.

[JoLeam]

Yes. Started with a few drops under the tongue and it made my instability instantly worse. Not sure if it is the dosage, method of administration etc. There are so many publicised benefits will continue experimenting and refer the outcome.

[AjaStar in reply to JoLeam]

I hear good things too about this but wanted to hear from u guys first to see if it helps or makes it worse. I’m sorry it hasn’t helped you. My neuro wants to prescribe cymbalta but I’m scared of side effects

[Redfire123 in reply to AjaStar]

I take cymbalta been on it for a year now

[AliRT]

It may well help. Personally I’d start with 1 drop under the tongue in the morning, next day 1 at night, then day 3, a drop at lunchtime too then tinker from there. Two or three divided doses helps keep a steady stream in your body, but because it’s a relatively new treatment, the dosing is trial and error.

It didn’t work for me, but my symptoms are very different as I have a movement disorder and non-epileptic seizures. After Woking my way through different ones, I take one to one oil (equal parts CBD and THC). Manages my symptoms pretty well, and my several seizures a week....I’ve not had one in nearly 7 months since I started taking it.

Good luck with the CBD, or whatever you find works for you xx

[AjaStar in reply to AliRT]

I’m glad u found something that helps your seizures. My body twitches sometimes but I haven’t gone full seizure.

[Scoobyloo]

I have found CBD oil to help more with the pain side I also have slurred speech but it has no effect on this. I use a spray this company it is two sprays under the tonge in the morning and two in the evening. There are many companies out there just make sure they are we'll known or good reviews. Good luck some people it helps and some people it doesn't. You just have to try it to see if it works for you and what it helps for you.

[AjaStar in reply to Scoobyloo]

Thanks..just trying to find something to make me feel better. I can’t drink since it makes my symptoms worse and I can only take Tylenol which is mild but it doesn’t really help much.

[Gud4Ewe]

Like anything else with this condition, results will vary. I get great help from Canibus products for general stability, nausea, anxiety, insomnia, pain, and general muscle spasticity. I am in a state where medical cannabis is legal. - Before it became legal, however, I experimented with a great deal of pure CBD products, as those were permitted. What I found was that I had better overall results if the product was a full spectrum product over a pure CBD product. A good example of this would be the CBD gummy from Lord Jones. shop.lordjones.com/collecti... - On those, I found almost 7 hours of feeling better. I did notice that if I took it daily, it wouldn't last as long. I now keep a box of those for times I have to travel outside of my area and can't bring my medication with me due to regulations. it isn't the best thing I have but for CBD products legal in all states, that one is my go to.

[AjaStar in reply to Gud4Ewe]

Thanks I’ll check out the link. My muscles can get very tight and super tense.

[Gud4Ewe in reply to AjaStar]

Yeah, I have a lot of issues with muscle rigidity, tension, spasticity, and ultimately, dystonia. That helps me control the spasms in my legs for a few hours so I can drive where I have to, safely. I still do all I can to not drive, but if I have no other choice, those can usually help me make it through the day.

[AjaStar in reply to Gud4Ewe]

I miss driving, but I sometimes get paralyzed and mentally stupid so I figure I shouldn’t. Actually about a half hour ago I started slurring and losing concentration and basically dumbing out. Legs started twitching and cramping. I hate losing myself like that. I am resting now nothing else I can do. I keep coming on here hoping to find... something

[Gud4Ewe in reply to AjaStar]

I'm the same way actually. I wish I had answers, but I think that's why so many of us are here. We have no answers and too many doctors are ok with that situation.

[AjaStar in reply to Gud4Ewe]

The doctors don’t know why this happens and they seem to think well if the blood tests and MRIs are normal then it must be stress, then they say I can’t help you, it’s basically up to you to do research on your own. I am glad I found this place, the only people who truly believe us and understands this as a true disability are us

[angelina22]

I’ve used CBD which can help, but prefer THC though recognise not everybody is willing to use something currently illegal. THC can help tremendously with tremors, slurred speech, muscle stiffness/pain, headaches, nausea, appetite loss & seizures. I used CBD from CBDbrothers website in the past which was good, but watch out as the actual CBD dosage in many items are NOT high enough. Ones from health food shops are expensive and, truthfully, shite. Have a search on the internet for some that have actual high levels of CBD. I’ll do some research too, for you. Sending love!!!

PS I’ve only ever used capsules, not drops.

[AjaStar in reply to angelina22]

So the THC didn’t aggravate your palpitations? I do want to smoke some weed lol. I tried it when I was younger and liked it, but I’m scared trying it now will overwhelm me

[angelina22 in reply to AjaStar]

Don’t be afraid - going into it with fear may only create a bad result. Go into it calmly, knowing that if you were to feel anything negative, it would only be temporary! It hasn’t aggravated my palpitations, but the trick is to go slow, especially with smoking. Have one very small puff, and wait 5-10 minutes, allow it to kick in, especially if you’re smoking pure/without tobacco (which I recommend - avoid things like alcohol & tobacco). If you’re puffing away, it’ll hit you hard and as you get high your heart will speed up. It’s all about going slow. I’m currently using rick Simpson oil, he has a 30 min video on YouTube talking about using it to cure people’s cancer, as well as his own skin cancer. I take a bit of the oil under my tongue before bed and I sleep through the whole night, it stopped me from waking up from my awful symptoms when I was suffering most. The trick for me was to take it at night rather than during the day, because it hits me harder than smoking, so if I’m asleep I don’t even know about it and for all I know it could be working wonders on my body the whole time. Really recommend trying to sleep as much as possible - the body works especially hard to heal itself as we sleep. I do find if I’m having some mild symptoms now, that a sleep allows me to wake up feeling like I’ve been reset.

[AjaStar in reply to angelina22]

I do miss drinking, used to calm me down but now only makes me feel worse. I loved my strawberry daiquiris and whiskey neat, hmmm maybe one day lol. Have u ever tried the cannabis brownies?

[angelina22 in reply to AjaStar]

Yeah I make my own, but with edibles you want to go slow too! A little bite. As they take longer to kick in and the effects last longer. I’m not using edibles currently as I’m on a strict diet, although there’s definitely plant based/whole foods recipes for them. Vaping cannabis is a really good one, it can be a lot more gentle on you/your system but you’ll still reap the benefits!

[AjaStar in reply to angelina22]

Sounds like a party!!! 😃 Can u just imagine a lounge like this at your neurologist office, they say there’s really not much I can do for you, your tests came back normal but why don’t you just hang out here for awhile with fellow FND patients and talk and have some medical marijuana and brownies and lollipops. No charge of course just a little free fun and recreation. Lol

[angelina22 in reply to AjaStar]

Oh jeez, as funny as that is, I can almost guarantee that would help us all! Especially just the idea of us all being able to connect face-to-face. One of the hardest things for me when I got really ill was how completely isolated and alone I felt, even around my loved ones! Because everybody sympathised and felt awful and helpless but nobody truly knew what I was experiencing, or what it was like to feel like your body and brain are malfunctioning. Perhaps sometime in the future a way for us all to meet up and talk/be there for each other could happen - though I know there’s many who are unable to due to mobility issues... we shall see. But the idea is a lovely one!

[AjaStar in reply to angelina22]

I am definitely isolated. My husband works and when he comes home he’s too tired to wanna take me out even though I can’t go out without him. And everyday he asks me how I’m feelin and hoping to hear that I’m feeling better. He doesn’t accept that I have this disability and he gets frustrated. So when he hears me say I’m still feeling bad he looks upset and then goes have a drink and listens to his music and I’m left alone. We have not yet adjusted to this, especially when my symptoms and it’s severity changes so you don’t know what to expect. So when he sees I can walk a bit and not slurring my words he gets happy but then the next day I’m paralyzed, he says I thought you were getting better and then he gets moody. I wish he could accept it because he’s not helping. Anyway coming here helps and watching other people’s videos, you know you are not alone in this and people do understand 😀

[angelina22 in reply to AjaStar]

I actually really understand your situation. But his behaviour and inability to accept does come from a place of love. He likely feels very helpless, and much like yourself, that you becoming sick is an inconvenience, because it is! When we think about our futures, we never imagine illness being a part of it. So when it happens it really throws us. I was lucky as my boyfriend was very positive, convinced I would better.. I felt pressured and fearful that he’d be wrong and leave me, but he was adamant that wouldn’t be the case. Luckily I’m getting back to normal, but there’s no doubt it could all change at any given moment. Perhaps it would be wise to open up to your husband, tell him that you know this is hard for him just as it is for you, but that you’re feeling disconnected and need his support. Even just sitting together is nice, rather than you being on your own so much. If you’ve already tried to communicate your feelings, it may just take time to adjust, as you said. If you ever want to talk more in depth, or feel that you’d benefit from having a friend to talk to, please don’t hesitate to ask - I’d be more than happy to throw my contact details your way. We can text all the time if you’d like. I don’t like the idea of you just having to hang out with yourself all the time when you’re in a situation that makes it harder to enjoy your own company. We’ve all got to look after each other. I’m here if you need me.

[AjaStar in reply to angelina22]

You are very sweet and comforting to talk to. My husband and I do watch some tv shows together just wish he’d wanna go out more and help around the house, but I shouldn’t complain cause I know he wishes I could do more too. Sent you a private message with my email. Wish you the best as well.

[Zappa777 in reply to angelina22]

Thanks for your advice Angelina22, it's much appreciated. while I'm here can anyone tell me if FND (after the first attack) can get worse? My daughter was diagnosed sometime ago and it mainly affected her left hand side, but now it's progress to affecting her right. Has anyone else experienced this??

[poppymom23]

I use CBD balm topically for pain control. I tried the drops but didn't really feel they helped. It might have been because I couldn't take them twice a day like was recommended on the bottle. My chiropractor, where I got the CBD drops, advised me to separate the CBD oil and my seizure meds (I take them for migraine prevention) by at lease 2 hours. There is some research that it can cause some extreme side effects if they are take together, so he just wanted to be cautious, especially since there are no specific studies on CBD oil like there are other medications.

[JonaJW]

I have tried CBD oil. For me personally, it was not that effective, but then it was a low% dosage from Holland and Barrets. I have smoked cannibis and found this to help with dystonia and muscle cramps. I am currently trying to instigate a research program in the micro-dosing of THC which reduces spasmodic actions and tremors. Progress is slow.