FND will CBD oil help?: Has anyone here. – Functional Neurol.
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.
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.
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
I take cymbalta been on it for a year now
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
I’m glad u found something that helps your seizures. My body twitches sometimes but I haven’t gone full seizure.
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.
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.
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.
Thanks I’ll check out the link. My muscles can get very tight and super tense.
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.
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
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.
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
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.
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
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.
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?
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!
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
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!
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
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.
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.
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??
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.
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.
Cannabinoids in the Treatment of Neurological Disorders
The force of the recent explosion of largely unproven and unregulated cannabis-based preparations on medical therapeutics may have its greatest impact in the field of neurology. Paradoxically, for 10 millennia this plant has been an integral part of human cultivation, where it was used for its fibers long before its pharmacological properties. With regard to the latter, cannabis was well known to healers from China and India thousands of years ago; Greek and Roman doctors during classic times; Arab doctors during the Middle Ages; Victorian and Continental physicians in the nineteenth century; American doctors during the early twentieth century; and English doctors until 1971 when a variety of nonevidence-based remedies were removed from the British Pharmaceutical Codex. However, cannabis-based or cannabis-derived medicines have been almost entirely absent from American medicine and barely present in European and Asian pharmacopeias during the twenty-first century .
Dronabinol (Marinol) is the only cannabinoid-based medicine that is approved by the US Food and Drug Administration, with an indication for loss of appetite associated with weight loss in patients with AIDS and those receiving chemotherapy . Dronabinol is the synthetic active enantiomer of the plant-derived cannabinoid, Δ 9 -tetrahydocannabinol (THC) and works via cannabinoid type 1 (CB1) and type 2 (CB2) receptors (CB1R and CB2R, respectively), where it acts as a partial agonist . In more than 20 European and other countries outside the US, nabiximols (Sativex; GW Pharmaceuticals, Cambridge, UK) is approved to treat spasticity in patients with multiple sclerosis . Nabiximols is a mixture extracts of two varieties of the cannabis plant, one predominantly containing THC and the other cannabidiol (CBD). Interestingly, and contrary to popular misconception, CBD is not a potent ligand at either CB1R or CB2R, although occasionally it can functionally modulate the consequences of mammalian endocannabinoid system stimulation in which the 2 cannabinoid receptors play a pivotal role . In fact, CBD has several noncannabinoid receptor molecular targets and thus exemplifies the diverse pharmacology of the 500 discrete components of the cannabis plant, of which nearly 100 have cannabinoid-like chemical structures.
The relative scarcity of proven cannabis-based therapies is not due to data that show that cannabinoids are ineffective or unsafe, but rather reflects a poverty of medical interest and a failure by pharmaceutical companies arising from regulatory restrictions compounded by limits for patent rights on plant cannabinoid-containing preparations that have been used medicinally for millennia, as is the case for most natural products. In some Western countries, funding to study, establish, and prevent adverse effects of recreational cannabis use, such as addiction and cognitive and behavioral disorders, has far outpaced basic or clinical scientific research in this area. This is not surprising, as in the USA, funding by the National Institute of Drug Abuse on research into cannabis abuse has dramatically exceeded that into cannabis therapeutics by all other National Institutes of Health institutes combined , despite the societal change favoring the deregulation of recreational cannabis use in the USA.
Phytocannabinoids—cannabinoids synthesized by plants—have a diverse range of biological effects from calcium homeostasis to antioxidant and anti-inflammatory properties and many more . Scientific interest in the pharmacology of cannabis constituents has steadily grown over the last 50 years since the isolation and synthesis of THC and CBD (isolated in 1940, characterized in 1963, and synthesized in the late 1960s) [8–11]. The action of THC at CB1R and the endocannabinoid system [including CB1R and CB2R, their endogenous ligands (the endocannabinoids), and metabolic enzymes for endocannabinoid biosynthesis and inactivation] were discovered in the late 1980s and early 1990s, and has been the most intensively studied aspect of cannabis pharmacology [12, 13]. A PubMed search (May 2015) identified 19,095 references on ‘cannabinoid’, 13,919 on ‘cannabis’, 6740 on ‘endocannabinoid’, 6579 on THC, and 1351 on CBD. These results suggest a wealth of information in the scientific and medical literature, but the vast majority is from basic science using in vitro or animal studies, which justifies caution if effects are being extrapolated to humans. The clinical data on cannabis therapeutics are meager and the vast majority are formed by surveys or small studies that are underpowered and/or suffer from multiple methodological flaws, often by virtue of limited research funding for nonaddiction-focused studies. Thus, we know relatively little about the clinical efficacy of cannabinoids for the various neurological disorders for which historical nonscientific and medical literature have advocated its use.
The challenge now for scientific medicine is that the “horse is out of the barn”. A wave of cannabis legislation, driven in part by medical claims and also by a changing societal view of recreational cannabis use, has washed across the USA, Uruguay, and Portugal, and will likely spread elsewhere as pressure from patients, their parents, and advocates demand access for its use in a range of disorders that can impair or destroy quality of life, or kill. Randomized placebo-controlled studies have been the main road to governmental approval of drugs and devices for the last half century and remain the gold standard by which efficacy is objectively judged. Yet cannabis has effectively bypassed that road by virtue of a ‘perfect storm’ made up of medical lack of interest, commercial unpalatability, societal acceptance of the naturalistic fallacy, and urgent unmet clinical need. A diverse range of cannabis plant strains, rich in different proportions of the 100 or so phytocannabinoids that have been identified, have been bred, and complex and often hazardous processing techniques devised to increase and extract specific components such as CBD or THC-acid, with highly variable results. These products are being used by consumers—from children with severe epilepsy to patients with chronic pain or insomnia or anxiety or cancer. There is a growing group of lay experts who profess knowledge of the correct mixture of constituents (e.g., “You need at least 2 % THC with the CBD to stop seizures”, or “CBD will not work if the child is taking leviteracetam”) who lack data and, often via association with alternative medicine schools of thought, do not feel beholden to the medical establishment’s basic demand for objective proof of safety and efficacy. We are moving back to days of Paracelsus and alchemy but multiplied by the echo chamber of social media and growing scientific illiteracy .
We believe that when nutritional supplements are recommended for either a specific disease (e.g., Parkinson disease) or general health benefits (e.g., cognitive function), there should be valid data to support those claims—data that are independent of bias created by placebo responses, financial gains, or other factors. Government should help to protect people from harm—whether the harm comes from spending money on products that do not deliver on their promise or have the potential to cause adverse effects that do not outweigh their harmful effects. Our governments make it illegal to sell a television that does not work but have allowed the dietary supplement industry to make innumerable health claims, which have no evidential basis and, in many cases, have been even refuted by scientific data. We therefore applaud the efforts of governmental agencies to identify fraudulent claims about compounds purported to contain CBD in which CBD is wholly absent or present in miniscule amounts.
We hope that this issue of Neurotherapeutics will serve to mark the bounds of verifiable scientific knowledge of cannabinoids in the treatment of neuropsychiatric and neurological disorders. At the same time, our contributors have also helped identify areas for future research, as well as the strategies needed to move our base of knowledge forward. We hope that this volume will help to accelerate the pace of the appropriately focused and productive research and double-blind placebo-controlled randomized trials to the point at which the care of patients is informed by valid data and not just anecdote.
We are pleased to have gathered many of the world’s experts together on the basic biology of cannabinoids, as well as their potential role in treating neurologic and psychiatric disorders. Dr. Di Marzo briefly introduces the endocannabinoid system. Dr. Whalley explains the molecular pharmacology of cannabidiol in neurological disorders, while Dr. Justinova discusses the biology of endocannabinoids. Dr. Gloss reviews the currently available cannabinoid products and the challenges facing our interpretation of the data associated with their clinical use. Drs Sachs, McGlade, and Yurgelun-Todd provide a general overview of the safety and toxicity of cannabinoids. Dr. Notcott reviews the clinical use of cannabinoids for the treatment of multiple sclerosis. Drs Stephens, Arjmand, and Shabani review the use of cannabinoids in the treatment of tremors. Drs Fernandez-Ruiz, Martinez-Orgado, and Moro review the use of cannabinoids in the treatment of neurodegenerative disorders and stroke. Dr. Hohmann reviews the use of cannabinoids in pain treatment. Drs Jutras-Aswad and Hurd review the use of cannabinoids in drug abuse treatment. Drs Blessing, Steenkamp, Marmar, and McCabe review cannabinoid use to treat anxiety. Dr. Goff reviews the risks and benefits of utilizing CBD as a treatment for schizophrenia. Drs Maccarrone and Chakrabarti explore the therapeutic potential of cannabinoids in treating autism. Dr. Koppel reviews the use of cannabinoids in treatment for dyskinesia, dystonia, and tics. Drs Rosenberg, Tsien, Whalley, and Devinsky review the use of cannabinoids in epilepsy.