Community Forum Archive
CBD OilWed, 07/12/2017 - 17:43
Hey guys, I am new to this forum but I am not new to the seizures. With that being said I have tried pretty much anything under the sun. I stumbled on to an interesting article about CBD oil. They have a solid amount of reviews of people becoming less and less likely to encounter seizures. I was just curious if anyone here had tried it? Cheers, Kwright
I can't help everyone but I
Submitted by whatitisepilepsy on Tue, 2017-07-18 - 18:07
I can't help everyone but I have some ideas. May I suggest talking to your doctor about a med called LaMICtal, If that dose not work, I went a whole year without arua or seizures taking a martial arts class. It was not so much what I learned, the over 100 jumping jack, stretching, working my body at least 5 days a week. You have heard it before," use it or lose it". Exercise make sense. As soon as I stopped everything came back with in a week. Good luck, life with out seizures can be amazing, always try new things don't let it win.
take a look at our section
Submitted by epihelp on Tue, 2017-07-18 - 19:43
take a look at our section about other therapies. a pharmaceutical grade cbd is being tested for seizures. CBD that you can buy in any dispensary is being used but not controlled trials - doses, side effects, safety etc are not known so be very careful and talk to treating providerhttp://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy
I also don't know about CBD
Submitted by HenryM on Tue, 2017-08-22 - 13:11
I also don't know about CBD Oil. So couldn't give you good reviews here. But I think if you google for a while you can get some ideas. Thank you!
Tried several. Some work "ok"
Submitted by MyCrazyLife on Wed, 2017-10-18 - 21:03
Tried several. Some work "ok" some do not. Not sure why, but I found that these people know what they are talking about, and said the tincture is designed for Epilepsy. It actually worked for me, down to 1 or 2 GM seizures every few months and PMs, Partials, and Atonics are rare now. I found for me I needed a higher dose than they said, but who cares to get control of your life back. I started using one they call steady, but I have found the nanopure works better. the website is cbdivahealth.com
New to the group as well, but
Submitted by atintpro on Tue, 2017-11-28 - 02:23
New to the group as well, but I have been treating my daughter, who has epilepsy, with CBD Capsules for years under the support of her neurologist. We had tried a few different name brand products with varied results. I now source my own raw materials and manufacture my own for the exact reason some are talking about, knowing what is in it and the exact dosage. Seizure patients tend to need higher milligrams dosages to stay seizure free. I have done plenty of research, as I needed my daughter to be able to lead a normal life. My daughter has had no seizures in a little over 2 years with the aid of CBD...I am a full believer!
Brent, your experience with
Submitted by PhishPhanPhil on Tue, 2018-04-10 - 13:49
Brent, your experience with CBD oil sounds very much like my own. I have had nocturnal, GM seizures for over a decade, complex partials evolving to generalized seizures. I averaged a GM seizure every 4 to 6 weeks for about 7 years, and had aura's daily, before I did an inpatient EEG (I procrastinated for way too long) and it was determined that I wasn't a candidate for surgery and had already failed every medical trial I tried. My neurologist suggested that I try medical marijuana (I live in Mass where it's legal), specifically CBD-rich strains, a recommendation that she had only made to one other patient at the time. I first tried some CBD isolate that I ordered offline and noticed the first time that I took it that I had no aura's that day. I decided to pursue medical marijuana, CBD specifically, further after seeing some results from the isolate, I had never seen any results from any AED's and was really excited to not have the side effects I was used to. I returned to my neurologist four months later after having had no seizures for that time and hardly ever an aura to report the good news. She was actually as surprised as I was and encouraged me to pursue a personal care giver to grow CBD-rich strains for me. This is what I've done and it has been over 2 years since I first started treating my seizures with medical marijuana alone (no AED's). I've had only three seizures over this time period (instead of the 20 to 30 I was averaging) and am sticking with this treatment option. Similar to what you do, my cousin (also my certified care giver) and I grow CBD-rich strains like, Cannatonic & Harlequin, then process it (closed-loop extraction) and I then make gel caps with some of the concentrate and tincture as well. This approach of monitoring the whole process, "from soil to oil", has served me well and I would recommend that this treatment option at least be considered by anyone not having success with AED's.
I have had Atonic and simple
Submitted by Mommyof1ForLife on Wed, 2018-06-20 - 14:43
I have had Atonic and simple partial and now 3 general ( loss of consciousness) seizures for 10 years but only diag. 2 Yrs ago, I’m sure you KNOW why. I’m considered intractable and I’ve been on 7 different meds, currently on 2. I’ve had an increase again to 1-2 every 3/5 days and last week I had 3 in 5 days. I’ve been seeing a Neuro and he’s been great but even he is stumped. He and his colleague talked about the Vegas stimulator but frankly, I’ve read it’s not a guarantee and it has bad side effects! Added to that you still have to stay on your meds. I’m tired, depressed and just done. I’d like to try the oil but he hasn’t mentioned it. I asked to maybe go to the epilepsy center here in St. Louis but he asked for more time to figure this out. That was a year ago. Blah if I take the oil, what about the ineractions with the meds?
Phillip-My mother has a
Submitted by a_kirk_ on Mon, 2018-07-09 - 02:18
Phillip-My mother has a similar story to yours. She’s been diagnosed with retractable epilepsy and has nocturnal GMs st night. At this point we’re done with conventional medicine and need to look to alternative treatment..I’m so interested in what you’re doing for her!
I have been using CBD since
Submitted by EpilepsyBabe on Mon, 2018-11-12 - 13:14
I have been using CBD since August when I finally gave up on seizure medicine. I have tried 10! Even though it is scary at first taking it since there isn't really any research on it and no one knows what dose will work for them, it isn't any scarier than trying a new seizure medication. Especially if those medications make you sick or try to kill you. It took about a month and a half of taking CBD for it to start to help. I heard that it starts working after a certain amount of time unique to that person because CBD has to heal you endocannibinoid system before it can help anything else. So be patient. After that I didn't have a seizure for 4 weeks (normally I have 3-5 a week). I have had seizures for the past 2 weeks but I think it is because I have been so stressed out. I have realized that I am recovering from my seizures REALLY fast. I even had a grand mal and it only took about a day for me to recover, instead of weeks or months! I am still on my CBD journey because I don't really know what I'm doing (but no one does let's be honest). Check out my blog if you want to know more about my journey with doses and brands of seizure medicine. www.epilepsybabe.com I also have a YouTube channel, same name.
I've not heard CBD oil. Does
Submitted by Timray86 on Wed, 2017-07-12 - 22:37
I've not heard CBD oil. Does it keep you from having seizures? Where can I research it?