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jochen1727

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hi everybody ;-)

First apologize my English sucks XD, i m french and not fluent in English.
I m 30 years old epileptic since 16 years old, i ve tried many drugs (valporic zvid, lévétiracétam, Lacosamide now(125 mg). i m stabilise for 4 years but i d like decrease side effects as sleepness primary and hands, legs shacking that wile i m interested by Cannabis especialy high CBD traitements like charlotte web ;)
 
Cannabis

As far as i know cannabis is only used as adjunctive therapy and anyhow all info is really extremely controversial. The case of Charlotte is more or less unique and another thing is she is a child and that is quite another story. I understand researchers are very cautious about using cannabis and there are not so many reliable clinical studies (if any) and results are rather conflicting.
 
The testing on CBD is showing great promise. At least as effective as AED's in some hard to treat cases and no major negative side effects (outside of potential allergy).
It is being tested as adjunct and primary treatment.
NYU langone center has been doing studies with pharmaceutical grade CBD called Epidiolex and the results have been good.
 
Hi jochen,

My neuro started me on CBD this past sumer after finding out I was drug resistant to seizure meds out on the market. I have found it has helped reduce my seizures greatly. The main side effect I get is sleepy. I went on line and bought the cbd on a web page called healthyhempoil.com they have different types of cbd at different strengths I found using the mouth spray works great and I just squirt it in my mouth 1-2 times a day. What I really like is if it doesn't work for a person they will give you your money back within 90 days. I wish you the best of luck and May God Bless You!

Sue
 
thks to reply ;)
Porkette, glad to understand ur CDB decrease ur seizures ;) it will be hard when you are drug resistant, i hope that help you to have a better life ;)
I ask you again few questions.
what s your dose of CDB and whitch treatment do u use?
be sleepy it s the worst side effect and lost focus, are you less sleepy than drugs ? CBD decrease your shaking?
Did u get the full dose at the begining or did u increase slowly like drugs?
CBD.
thks workette ;)
 
Jochen , please don`t start experimenting on your own. There is a lot of info in the net and i hope u know that even if u have side effects with your AEDs and don`t have seizures right now it is VERY dangerous to try and change things without supervision.
Here is a citation from "Innovations in Clinical Neuroscience" for April 2016:
"Clinical applications are NOT approved, thus are restricted and only recommended in selected treatment unresponsive cases, with appropriate monitoring."
I think all of us who have side effects would much rather go without them, but i am pretty sure a lot of us would prefer side effects to seizures.
Take care
 
137Alice said:
Jochen , please don`t start experimenting on your own. There is a lot of info in the net and i hope u know that even if u have side effects with your AEDs and don`t have seizures right now it is VERY dangerous to try and change things without supervision.
Click to expand...

:agree:

Jochen, As I said in your other posting, marijuana IS LEGAL in my state of Colorado and "Charlotte's Web" started in my state. I could use it any time if I really wanted to. I have refractory E and other health issues so I don't think using pot is good for everyone. Check out the website I posted earlier.
 
Based on what I have learned about CBD for epilepsy, my opinion is along the lines of those what 137Alice has said above. As Frink mentions, medical grade CBD (very different from what is sold on online sites) is "showing great promise"; in other words, it is not yet approved for general use, and only has orphan drug approval for use in two specific syndromes of childhood epilepsy: "This trial follows the announcement in March 2016 of positive results in a pivotal Phase 3 trial of Epidiolex for the treatment of Dravet syndrome. Epidiolex has Orphan Drug Designation from the U.S. Food and Drug Administration (FDA) for the treatment of LGS and Dravet syndrome". https://globenewswire.com/news-rele...the-Treatment-of-Lennox-Gastaut-Syndrome.html

There have been a few studies involving adults but Epidiolex has yet to receive FDA approval for adults, although perhaps in some countries neurologists can get special approval for use of Epidiolex in some cases of drug resistant epilepsy.
 
masterjen said:
it is not yet approved for general use, and only has orphan drug approval for use in two specific syndromes of childhood epilepsy: "This trial follows the announcement in March 2016 of positive results in a pivotal Phase 3 trial of Epidiolex for the treatment of Dravet syndrome. Epidiolex has Orphan Drug Designation from the U.S. Food and Drug Administration (FDA) for the treatment of LGS and Dravet syndrome".
Click to expand...

As I said earlier, marijuana IS legal in my state, therefore they are using this drug, Epidiolex, at Children's Hospital in Denver for severe seizures, or Dravet Syndrome.

https://www.childrenscolorado.org/c...cal-marijuana/medical-marijuana-and-epilepsy/

Current CBD studies for the treatment of epilepsy

Phase III placebo controlled studies of cannabidiol (CBD), are being completed currently. When the results from these studies are fully available, we will better understand the potential role of CBD in treatment of epilepsy. In these studies, pharmaceutical grade CBD oil, Epidiolex, is added to current seizure medication treatment regimes.

It's important to note that the CBD oil used in the clinical trials is vastly different than the artisanal cannabis products available in Colorado. In states like Colorado, where medical marijuana and its derivatives are legal, the content of CBD products is not regulated for purity or uniformity. Pharmacy-grade products like Epidiolex have followed Good Manufacturing Processes, meaning that the CBD content is measured by rigorous standards and is carefully monitored for additives or contaminants. Even the equipment used for manufacturing these products meets rigorous standards. None of this is guaranteed to be true for the artisanal products.


More medical marijuana research is needed


This substantial gap between the various anecdotal reports underscores the desperate need for robust scientific evidence for the potential benefit and risks of marijuana in people with epilepsy. Healthcare professionals do not currently know if marijuana is a safe and effective treatment for epilepsy, nor do we know the long-term effects that marijuana will have on learning, memory and behavior, especially in infants and young children.

However, we do know, based on both clinical data in adolescents and adults, and laboratory data in animals, that there are potential negative effects of marijuana on these critical brain functions.
Click to expand...
 
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hi jochen,

I have started out at a low dosage of cbd oil and it was my neuro who brought up the idea of me using cbd. I do agree with everyone here you can't do this on your own you have to speak with your neuro about it and also find out if the cbd will interact with any seizure meds you take.

I have to slowly work my way up to 250 mg a day of cbd right now I'm only using 1.25 mg. a day but it is really helping me a lot. I started out using a low strength of cbd and after 3 months I've increased it's strength.

As I mentioned the cbd does make me tired a couple of minutes after I have squirted some in my mouth and it has taken me awhile to get used to being so tired. Personally I think the cbd makes me feel a little more tired than my seizure med.

The treatment I use is a mouth spray that you can get in different flavors, right now I'm using the extra strength mouth spray cbd oil.

The cbd has calmed my nerves, I had no problems with shaking or anything like that but I also take it because it's stops cancer and helps the heart and both cancer and heart disease run in my family.

If you do decide to use cbd do not drink alcoholic beverages that can lead to a lot of serious problems. I wish you only the best and May God Bless You!

Sue
 
Thk you porkette for your testimony.glad to know you in better health With your hemp oil.
I ll follow your advices, first try few drops and see résults and decrease slowly my lamictal dose or not.My primary issue With my drugs are fatigue and less focusing. If it s worse I d stop my oil, I M not completly foolish =).
With my drug I can drink à lot of alcohol without any problems but i m gonna stop alcohol.so I ll see With oil.1mg is a weak dose oo.specialy for seizures .
I ll try and give you m'y feedback.
 
i ve started my CBD oil, taste is strong, few drops morning and evening. I hope so stop my lamictal and switch my actualy CBD instead of lamictal.
 
Hi jochen,

I wish you the best of luck with the CBD it is strong tasting I do agree. Keep us posting on how it goes. Wishing you well and May God Bless You!

Sue
 
Decrease from 100 to 75 mg lamictal.
take 5 drops morning evening.
No spasms, already tired. Strong taste but ok with orange juice;).
will see...
 
Which mouth spray do you use porkette and which oil?
Are us still tired with 1.25 mg because it s a small dose compared with 250mg which is the smallest CBD dose to fix epilepsy.
 
Hi jochen,

I use the herbal extract hemp oil 100-250 mg. mouth spray. I agree it's a small dosage but it has worked wonders for me. I've only had 3 seizures this past month and that's low for me. Wishing you well and May God Bless You!

Sue
 
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