Community Forum Archive
CBD Oils?
Fri, 04/18/2014 - 14:27Topic: Medication Issues
I am curious if anyone has tried the new CBD oil to control their epilepsy. I have read many great things about it really controlling seizures and maybe trying it myself. I have been on about 9 different medications now and am going back on Monday for another one. If this round of medications doesn't work I am really thinking about the CBD oil. Does anyone have experience with this? Or know someone who does?
Comments
Sorry about my lack of info.
Submitted by Biff35 on Fri, 2014-04-18 - 23:59
Sorry about my lack of info..I am 23 and got diagnosed at age 16 with focal petit mal seizures. I got rediagnosed this year with generalized myoclonic seizures and absence seizures. I have been on topamax, lamictal, carbomezapine, keppra, and some others I can't think of atm. Side effects varied from extreme sleepiness, insomnia, loopiness, loss of self and causing more seizures. I'm on Vimpat right now which causes me to feel sick and loopy constantly and still having seizures almost everyday. I had 2 today. I go in for another medicine change and if this next one doesn't work I'd like to try the CBD oil as I read it doesn't have any side effects. Thank you for your response it is very appreciated! !
Hi Biff,The medication
Submitted by Eternal_Howl on Wed, 2014-04-23 - 00:22
Hi Biff,The medication situation is never a fun one. The drugs are often riddled with side effects. I've been looking at CBD for other things, but not for myself, at least not at this stage. I've done very little reading on the effects of CBD and epilepsy because my medication does work for me. (Diagnosed at 9, first seizure at 8 and no seizures while on medication that I got at my doctor's reluctance to prescribe it due to its addictive nature). I'm 36 now, pushing for 37 and yet it still seems like not that long ago I was questioning my existence. You were originally diagnosed at 16 and then received a modified diagnosis based on how the seizures are now, correct? How long were you on the different medications and did you take any of them at the same time (complimentary therapies) or did you take them as one drug at a time and not concurrent with others? The lethargy is typical of most anti-epileptics unfortunately. Some stuff you can work your way through and get used to - others just seem to keep your wiped out. I remember. To be honest, I haven't heard of Vimpat. It must be a newer type of AED, or it might go by another name. Are you living in a State that allows for CBD use? Honestly, it's not worth the headache if you aren't. You'd have all kinds of stress that could trigger seizures if you were using it where you shouldn't be. I know, it seems so moronic. I can't speak about CBD for seizure control and I can't really compare my use of pot as a youngster to offer a reliable source, but I would advise that if you go looking for information, (if none can be found here), look out for credible sources such as science journals and scientific studies, as well as first hand accounts. Sites that are advocates for CBD, THC and decriminalizing marijuana aren't typically going to be unbiased and I've seen claims that it can cure just about anything, so all I can suggest is be objective and try and read through the stuff you find out as critically as your 'loopiness' can afford you. Nature may hold the answer to many of our ailments, but it's about how and what and in what dosage and form and one size does not fit all - that's why you've already been through a bunch of meds. By the way, what type of meds have you been taking? Can you find out the actual ingredients or class or what types of seizures they're intended to treat? If I wasn't medicated, I would have grand mal and petit mal and possibly other seizures, but I'm on a medication that treats for partial seizures and it seems to work for all of them. I don't advocate for my meds however, since they're highly addictive and have their own risks and what works for me, doesn't necessarily work for others.I'd be interested to also know if anyone on this site has used it, or is using it and finding it helpful and if they were able to say what kind of seizures they were treating themselves for. Interesting post, Biff. Best of luck with your quest for a treatment. I say treatment, because I think at 23, you're probably not expecting a cure, but something that just stops most (if not all) of the seizures and allows you to function like a human being again and not feeling like a zombie.
Hi... I have heard many good
Submitted by remif250@yahoo.com on Mon, 2015-08-17 - 16:10
Hi... I have heard many good things about cbd... And a lot of those things came from neurology nurses..
Hi Dave,This blog has some
Submitted by doglovermom4 on Mon, 2017-04-24 - 14:46
Hi Dave,This blog has some good info about CBD basics - http://cbdoilexpert.com/cbd-101/ . My husband and I have been using it extensively lately. It's a good place to startDLM
Hello Maria,I suggested this
Submitted by doglovermom4 on Mon, 2017-04-24 - 14:47
Hello Maria,I suggested this link to Dave above. I think it is relevant for you, as well. -- http://cbdoilexpert.com/cbd-101/DLM
Hi Dave,This blog has some
Submitted by doglovermom4 on Mon, 2017-04-24 - 14:47
Hi Dave,This blog has some good info about CBD basics - http://cbdoilexpert.com/cbd-101/ . My husband and I have been using it extensively lately. It's a good place to startDLM
scott how has the cbd oil
Submitted by wsirianni on Sat, 2017-07-22 - 13:25
scott how has the cbd oil worked for you?
We are from New Zealand, our
Submitted by daniel aston on Wed, 2017-07-26 - 02:17
We are from New Zealand, our child has focal aware seizure (with myoclonus movements). We have tried from low percentage to very high percentage CBD without any results. We have also tried various products such as the 5000 Charlotte's Web Everyday Advanced, the Pytho Plus 3%, and Endoca 3% among others with no real result, however it was the Naturalwonoil 3% that had the best effect and it was the first CBD we tried. Unfortunately we were unable to continue the purchase, nonetheless, we have just resumed the purchase and we are anxious to see the great results again. As I said before the 3% Naturalwonoil worked best for our little boy, highly recommend it.
http://www.drugpolicy.org
Submitted by tatijancika on Sun, 2017-08-13 - 17:24
http://www.drugpolicy.org/blog/are-websites-claim-ship-cbd-oil-non-medical-marijuana-states-legit
http://www.drugpolicy.org
Submitted by tatijancika on Sun, 2017-08-13 - 17:30
http://www.drugpolicy.org/blog/are-websites-claim-ship-cbd-oil-non-medical-marijuana-states-legit
I live in WA. I have talked
Submitted by tatijancika on Sun, 2017-08-13 - 17:30
I live in WA. I have talked to a few shop owners one specifically has taught me so much about cbd oil for my epilepsy. I now take a very well known brand. Owners all emphasize it is illegal to sell online and 99.99% is fraud. Grown with pesticide,chemicals... you name it.
your story sounds a lot like
Submitted by Tweetybird_59bd505872db2 on Sat, 2017-09-16 - 12:24
your story sounds a lot like mine I am sorry your going through these difficult times. I am going in the hospital on Monday for 5 days for a Video EEG. I have had so many horrible side effects or allergic reactions to many seizure meds. They have increased my Keppra and Phenobarbital I cant handle theses meds anymore and I am still have way too many seizures. Two Neurologist suggested I try the CBD oil instead of the meds. No one wants to increase my meds anymore. Happy about that I hope I can get off these meds soon and head straight for the oil when I get out of the hospital I have heard many many good things about it's use for seizures. I wish you well and God bless you. I live in CA so it's very easy to get here what kind of seizures are you having ?
There are a lot of people
Submitted by Bmacketc on Sat, 2017-09-23 - 13:32
There are a lot of people turning to CBD oils right now, largely, because of the amazing results spreading via the interweb. It is difficult, as I found myself, to know what to order and who to order from online. If you order from a government approved or a medical marijuana website, everything is too expensive, and if you order from another website that seems like the prices are slashed in half, you wonder if you're getting a real product or not.I came across I CBD oil distributor (Green HoriZen,) at a farmers market a few months ago, and not only realized it was 100% legal to obtain CBD oil for your personal & medicinal needs in all 50 states but I decided to try it for my son who does not have epilepsy but does have ADHD, ODD, and the moodiness that accompanies these things.Within a few minutes my son's Behavior changed dramatically (for the better!) Within the last few months, he is a different person, and together we are learning the benefits of this oil for more than just mood swings & pain. The benefits of CBD oil go far beyond helping with epilepsy though I know that's what you want it for primarily. This oil can benefit your life in multiple ways.So I have done a lot of research and in trying to help my friends with kids with epilepsy have come across so many wonderful testimonies of this oil and particular helping children with epilepsy.I wanted to share this testimony of one particular child with you.https://m.facebook.com/groups/1445383962151345?view=permalink&id=1474993572523717I hope this helps. If anybody is interested in ordering CBD oil that has had nothing but good reviews, and amazing prices, please let me know. I wish you all the best. BrookeMackintosh@gmail.com
What company did you order
Submitted by Sramse03 on Sun, 2017-11-26 - 21:16
What company did you order from?
What company did you order
Submitted by Sramse03 on Sun, 2017-11-26 - 21:17
What company did you order from?
So where did you get from?
Submitted by Sramse03 on Sun, 2017-11-26 - 21:17
So where did you get from?
HealthyHempOil.org
Submitted by rising.biscuit on Sat, 2017-12-02 - 12:40
HealthyHempOil.org
NEED CBD OIL FOR PAIN ,
Submitted by Cannabis Oil 55 on Mon, 2017-12-04 - 18:46
NEED CBD OIL FOR PAIN , CANCER AND seizure EMAIL ME .. petersonhunt1@gmail.com
NEED CBD OIL FOR PAIN ,
Submitted by Cannabis Oil 55 on Mon, 2017-12-04 - 18:51
NEED CBD OIL FOR PAIN , CANCER AND seizure EMAIL ME .. petersonhunt1@gmail.com
Hello
Submitted by Cannabis Oil 55 on Mon, 2017-12-04 - 18:51
Hello
Hello, would love to chat. My
Submitted by IveriaLorenz on Mon, 2018-02-19 - 12:52
Hello, would love to chat. My dog has seizures and I started giving him CBD oil. What I have noticed is he has them less often and not as long as he used to have. Please reach out to me if want to talk. I am on Facebook Iveria Lorenz. :-) Thank you and good luck. CBD oil rocks! PS Pets and kids need less mg. Go for organic and hemp based because it will not have sugar added. I have heard great things from people with epilepsy and CBD without THC has no side effects. It will be amazing addition to your diet. It has Omega your body so need :)
CurveCBD is an all organic,
Submitted by Anusya729 on Tue, 2018-02-27 - 07:02
CurveCBD is an all organic, full spectrum product! Best I've tried. Hope this helps!
There are a lot of online
Submitted by Anusya729 on Tue, 2018-02-27 - 07:04
There are a lot of online places that you can purchase from now. Things are getting much easier. I've been using CurveCBD and have had amazing results.
Please keep trying
Submitted by Kathy92881 on Sat, 2018-03-17 - 21:59
Please keep trying neurologists. My grandson (5 yrs. old) went to five different neurologists who kept wanting him on anti seizure meds for his absence seizures. None of the meds he tried worked and only made him very aggressive. His new neurologist finally requested a spinal tap, MRI and genetic testing. She thought he might have Glucose Transporter Syndrome Type 1, a rare syndrome -- one of the symptoms - Epilepsy that doesn't respond to drugs. But after the genetic testing, it turns out he actually has CHD2 myocolonic encephalopathy, an extremely rare disease. They suspect more epilepsy patients have it, but most patients don't undergo genetic testing. So please, keep going to a neurologist until you find one that will actually listen to you and order additional testing. At the moment there is no cure for CHD2, but it explains some of his other problems and maybe as more patients are identified, researchers will be encouraged to search for a cure or at least create a medicine to help the patients. But with this new neurologist for my grandson, we found out there are other causes for epilepsy other than "it just happens" to some people. And his new neurologist also suggested that my grandson try CBD oil. And said some work better for some people than others so try a different brand if the first doesn't help.
Dear Robert,I understand what
Submitted by Jessarah on Wed, 2018-03-28 - 22:51
Dear Robert,I understand what you are going through. Similar to what we have gone through with our daughter now 15. Keep looking for a solution. One thing that makes a big difference with our daughter is the amount of stress she gets from the environment and food. Try to provide a peaceful, harmonious environment. Let her sleep as much as she wants, giver her cuddles, support and love. Avoid watching too much TV. We restrict carbs in her diet, processed foods, give her lots of vegetables, olive/pumpkin seed oils, and meat.Our daughter started at 10 on her first hormonal changes. We made changes and she recovered after almost a year. However with the school and personal stressed she relapse last year and again she is having seizures we are still hopeful she could control it via medicine, diet and less stress...Best wishes
CBD is one of many compounds,
Submitted by Meetchy on Thu, 2018-04-05 - 05:19
CBD is one of many compounds, known as cannabinoids, that are found in the cannabis plant. Researchers have been looking at the potential therapeutic uses of CBD. And it can help also to cure illness including epilepsy i read this https://www.worldwide-marijuana-seeds.com/blogs/marijuana-news/cannabis-as-medicine that i know it will help you lot with your going through right now. Its hard to have a problem like that. hoping that i help you with that.
Robert,I'm so sorry to hear
Submitted by Christinehgp on Fri, 2018-05-04 - 22:56
Robert,I'm so sorry to hear that your daughter and your family is going through something so terrible. I'm sure you have done your research in trying to find healing for your daughter and hope you gave found a natural, healing solution. If you haven't, I ask you to prayerfully consider what I am about to share with you.As an Executive Independent Affiliate with HempWorx and CEO of HempWorx 4 Patriots, my mission is in the education of natural pain relief, both physical and emotional, and how the human Endocannabidoid System (ECS) and Cannabidoil (CBD) play a critical role in that process. I am an avid CBD Advocate who understands the importance of using CBD on a daily basis to promote homeostasis and a healthy lifestyle. As a certified Behavioral Health Coach and Army Veteran, a personal passion of mine is reaching out to those hurting from physical and emotional pain, in particular Veterans and First Responders. Hempworx CBD Oil is a natural and alternative option to addictive pain medications and opioids. It naturally combats and relieves symptoms of PTSD, migraines, anxiety, SEIZURES, depression, sleep disorders, arthritis, inflammation, diabetes, chronic pain and those who desire over all wellness.HempWorx is full-spectrum, organic, Non-GMO, third party tested & certified, only CBD company with drug test compliant and FDA approved facilities in Kentucky USA, and legal in all 50 states with global shipping. Our company is quite frankly, the "Rolls-Royce" of CBD Oil.The HempWorx Company Video, Product, Documentation, Reviews, and FAQ, can all be found directly on my website at www.hempworx.com/christinehgp. If you need assistance finding information on my website please let me know!What sets us apart from other CBD Companies is our full-spectrum CBD Oil with .03% or less THC and pain relief creams, that meet federal guidelines and is why we can sell to all 50 states and globally, including wholesale bulk shipments. Our newly launched THC Free CBD Oil has 0% THC and was created for Military, Firemen, Government, Law enforcement personnel and anyone drug tested who desires to use our products. They can now do so without fear of failing a drug test and risking the downward spiral of opioid addiction. Our Yellow Lab service dog is also relieved of his arthritis and allergies with the HempWorx CBD Oil for Pets.Also attached is a medical review video of our CBD Oil by Dr. Gupta and Dr. Zubkin which will be of interest to you and who endorse CBD Oil.* Doctor Review: https://vimeo.com/245552149Looking forward to connecting soon and addressing your questions and concerns regarding HempWorx.Christine Nilson Garris Veteran's Outreach Executive HempWorx 4 PatriotsOffice: 678-836-3922 Email: christinehgp@gmail.comwww.hempworx.com/christinehgp
Just a comment to the last
Submitted by ShortyzPlace on Mon, 2018-05-21 - 15:17
Just a comment to the last post, I am not trying to sell this product on here, just saying make sure if you are trying CBD Oil that those things I mentioned are considered when choosing a product. Also know that Epidiolex is the only FDA Approved CBD Oil & is use for Child Seizures and by prescription only. ($30,000 -$60,000 a year)
I don't Sell Epidiolex
Submitted by ShortyzPlace on Mon, 2018-05-21 - 15:19
I don't Sell Epidiolex
I would also like to know :)
Submitted by Blu on Wed, 2018-05-23 - 05:01
I would also like to know :)
I just had a grand mal
Submitted by elizabeth.bonderson on Fri, 2018-05-25 - 23:02
I just had a grand mal seizure and took some and within less than five minutes I could feel a difference mentally.
There was a Dateline NBC show
Submitted by Marty Kaas on Sun, 2018-05-27 - 13:35
There was a Dateline NBC show called Growing Promise which featured the use of CBD on children with epilepsy. The evidence is pretty convincing how powerful and safe CBD oil is for treatment of seizures. https://www.youtube.com/watch?v=kuherat0vEw
Try ishoppurium.com gift code
Submitted by Shredderli on Sun, 2018-05-27 - 14:08
Try ishoppurium.com gift code totalhealth17. 1500 mg 6 sprays gives u 50 mg do 2 or 3 times a day. Cost after code is 69.00. also all non GMO. Text me at 516 984 9722. God bless
I get blanks when I’m
Submitted by Shanly on Sat, 2018-06-02 - 11:50
I get blanks when I’m sleeping, can I take the CBD oil before bed to get a more relaxed sleep? Or does it have to be after the seizure?
I got idiopathic epilepsy
Submitted by Andy Haase on Tue, 2018-06-12 - 10:25
I got idiopathic epilepsy after the gulf war, i still have 2-3 grand mal seizures a year. Im on keppra 750mg bid right now, I tried some CBD oil 600mg and it really didnt do anything. What strength is everyone using, maybe the dose was to small or maybe it just wasnt pure enough. Being muscular and having seizures is probably some of the worst pains you can imagine, literally feels like every muscle in my body is torn off the bone, Ive even gone into rhabdomyolysis on several occasions.
I'm wondering the same thing
Submitted by Kbeth on Tue, 2018-06-12 - 11:51
I'm wondering the same thing for my 9 year old son. We've been through Hell.
Keppra is a bad drug for side
Submitted by Jes_904 on Fri, 2018-06-15 - 08:05
Keppra is a bad drug for side effects. It made my husband extremely mean. I am a supporter of CBD oil. It’s amazing. But sounds like you should also talk to your neurologist about getting on a prescription medication that doesn’t have quite the side effects that keppra does for her.
Kate, if you have more
Submitted by mhyde on Sat, 2018-06-16 - 22:48
Kate, if you have more questions and want to contact me via email let me know and I'll give you my email address.
green mountain cbd oil out of
Submitted by spiritbear on Fri, 2018-06-22 - 12:25
green mountain cbd oil out of vermont it is all organic they have a web page to order.
green mountain cbd oil out of
Submitted by spiritbear on Fri, 2018-06-22 - 12:26
green mountain cbd oil out of vermont it is all organic they have a web page to order.
I am independent affiliate
Submitted by Mfreeves69 on Tue, 2018-06-26 - 17:09
I am independent affiliate with hempworx. One of the purest forms of CBD oil. For those who have tried 600mg and it hasn't worked...how much did you consume? Drops or capsules/gel tabs? You cannot OD on CBD oil. I have helped plenty...and they have had good results. My name is Michelle...text me if you would like more info 4074853540. @Andreas Haase
If you are interested in
Submitted by Ragurs on Wed, 2018-06-27 - 20:14
If you are interested in trying 750 mg FULL SPECTRUM CBD, visit silverlining.firstfitness.com. God Bless!
Does anyone know if these
Submitted by KathyB on Wed, 2018-07-04 - 09:03
Does anyone know if these impact the effectiveness of Keppra or Vimpat?Is this takes orally in pill form or by another method?
Did your daughter try this?
Submitted by KathyB on Wed, 2018-07-04 - 09:05
Did your daughter try this? My daughter is 20 and in the same situation.
Does anyone know if these
Submitted by KathyB on Wed, 2018-07-04 - 09:05
Does anyone know if these impact the effectiveness of Keppra or Vimpat?Is this takes orally in pill form or by another method?
I’m not here trying to spam
Submitted by Dee Medicine Woman on Wed, 2018-07-04 - 14:56
I’m not here trying to spam this forum, I am very strong about helping people. Please visit deemedicinewoman.com for Natural Health consults and a Source for information on CBD Oil and an excellent CBD Oil. Not all oils are equal. Thank you and should you need nutritional or Natural health information please feel free to contact me. Bless you all
Kathy Beeksma the product
Submitted by jamesmullen96@yahoo.com on Fri, 2018-07-06 - 12:20
Kathy Beeksma the product that I have been using Ultracell I have been on anywhere to keppra,colozabam,dilantin phenytoin,phenobarbitol,vimpat, they helped and I am still on keppra and colozabam Ultracell has been a great relief to me and I encourage people everywhere to research it on youtube it has helped with others of my ailments as well.
Hi Michelle! My mother has
Submitted by a_kirk_ on Sat, 2018-07-07 - 03:44
Hi Michelle! My mother has gran mail seizures and no medication has worked for her. The docs have told us her kind of seizures will not be able to be controlled by medication but she’s not a surgical candidate. Would your type of oil be able to help her? Please help!
My 23 year old daughter was
Submitted by soxfans14 on Mon, 2018-07-09 - 11:08
My 23 year old daughter was just diagnosed with epilepsy. She has only had one seizure but gets auras where she gets disoriented, which is always followed by a migraine. The dr. just started her on the generic of Keppra. The bad thing is she is moving 7 hrs away to go to grad school and I am a wreck! Having little knowledge of epilepsy, it is so scary that she will be on her own. I want to try the CBD oil, but I don't want it to mess her up either? Anyone else have any input on these auras?
I have read some
Submitted by Anonymous on Fri, 2014-04-18 - 19:13
I have read some regardingCBDoils but I have not tried it yet. You did not post the type of epilepsy you have nor did you post how long ago you were diagnosised. You also did not post the length of time you were on those medications and why you were taken off them. I have been on many in the 50+ years of living and dealing with epilepsy. Many doctors would consider my epilepsy as controlled even tho I still have seizures. So what does controlled mean to you compared to neurologists. Some people with epilepsy may become seizure free and still have to take medications. Thene there are others like me who will still have seizures but because the seizures I still have are few in a months period of time and short lasting seconds and time to focus is also seconds neurologists can and some do consider my epilepsy controlled. If you were having side effects and you did not let your body get used to the medication then that medication might have controlled your seizures and it was changed prior to adjustments in dosages were made. I can understand someone wanting medications to be like magic but a medication that works for one person may not work for the next. The same with dosages. Can everybody eat the same thing??? I know some people that have to avoid certain foods becasue it upsets their stomach. Others can have problems with green vegies becasue they are taking blood thinners and green veggies make the blood thicker. If you are a teenager and you are growing then understand that most medication dosages are set with the bodies weight. My dosages changes 4 times in 8-12 months. I grew 8-10 inches in height and went from 85 lbs to 135. SO the dosaged needed adjusting almost every other month. Medications are being created for certain kinds of seizures. There is a possiability that you may have more then 1 type of epilepsy. I say that because I have Grand Mal, Pettite Mal and Focal Motor epilepsy. The worst, the slightest and several landing between them. I have had a few grand mal and some pettite mal seizures but the majority of my seizures would land in the focal epilepsy which can generalize into a convulsive seizure which looks like a grand mal seizure. The difference is in those I am fully concious and know what is happening. I hope this helps and you get the assistance you need Joe