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Thread: Refractory Seizures

  1. #11
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    Sue, I am going to share a portion of the email I sent to you.
    Re the medical marijuana! I would try it in a heartbeat! I fully believe that there are so many good qualities to it and if you think about it, there must be or the pharm co would not object to its being legal. I also heard and bet that the components have already been separated and used in some medications. I remember reading years ago the THC was used in Depakote! That is the one med that stopped my bedwetting, and it is used as a mood stabilizer!! I would bet on it but don't know for sure. Now that it is an option for you, I would not refuse that option!!! I would try it for sure if it may help me decrease or rid me of seizures. I would not fear any kind of addiction any more than I would from the pharmaceuticals we have available. I feared what my seizures were doing to me so much more. I do hope you get the opportunity to try it and do so! Some docs do not like any competition, and if the medical marijuana was not something he suggested, doesn't understand nor accept, or is not willing nor able to have access to it, I can see him finding fault with it. This is about you though and no one else! I also recall your being willing to participate in a clinical trial if there was a possibility that the new untested medication would stop your seizures. Consider this a clinical trial as it probably is just that except there is more known about the effects of marihuana than the untested untried "drugs" the pharm co wants to sell.
    I don't see Refractory and TLE as being in the same catrgory at all. TLE says where it is located and based on what we know about TLE, what types of seizures you/we probably have. Refractory means that they cannot control them. So the type of epilepsy is TLE, but the seizures are Refractory. So, I guess they just say you have Refractory Epilepsy meaning it is not controllable with typical means. Your docs may have to use that word in order for it to be paid for or, better yet, for them to be able to order it!!!! That word may need to be there to prove it is Medically Necessary!!!! I bet anything they have to have it in your chart. I had Intractable since the medications would not control mine either. I hope the medical marijuana works for you and hope you give it a try Keep us posted. Tattoo

  2. #12
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    Hi Tattoo,
    I have an appt. with my Epi in a couple of months and I am seriously thinking about giving the medical marijuana a try the only thing I would want to do is maybe be admitted into the hospital for a few days for observation and safety since I've
    been taking vimpat, Diamox and mysoline (primidone) for a long time and I know it will be hard to go off any of these drugs. When I started Depakote back in the 1970's it was a new drug and I was admitted into the hospital for safety. I just don't want
    the Epi to add on medical marijuana to the other 3 AED's I'm taking. Before I forget to ask what is THC? I'm not that smart when it comes to chemistry. Thanks for your time and help and May God Bless You!

    Sue

  3. #13
    Distinguished Community Member howdydave's Avatar
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    From what I hear, medical marijuana can be a real pain in NY State.

    The last I heard, you had to go to a medical facility and consume it on site.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  4. #14
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    Hi Dave,
    After looking into the medical marijuana I don't think I will try it even though my Epi wants me to. I found out that it causes hallucinations, and weight loss and I've lost a lot of weight and I can't
    lose anymore. Try finding a size 0 when you are buy some jeans. It's not that easy. Thanks for all of your help and support.
    I wish you only the best and May God Bless You!

    Sue

  5. #15
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    THC (Tetrahydrocannabinol) is the component in marijuana that gets people "high". With epilepsy, you do not want the THC, rather you want the CBD (cannabidiol) content of the plant. CBD does not cause the "high" effect. This component seems to work when trying to control seizures.

    As for how to administer it? If ingested it stays in the body longer than is smoked. Teas are common, it can also be mixed/baked into foods. If a person has an extended precursor, quickly inhaling once or twice gets it into the body quickly when compared to eating.

    I started doing a LOT of research on this after seemingly medication after medication failed or had no effect. They never legalized it in my state, so I don't know if it would have helped me or not.

    --Travis

  6. #16
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    Hi Travis,
    In NY they have the pill form of medical marijuana according to my Epi. I am going to ask my Epi if it would even help me since I'm drug resistant according to the DNA test they did on me. Thanks for your time and help I greatly appreciate it.
    I wish you only the best and May God Bless You!

    Sue

  7. #17
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    Marinol is a synthetic form of only one aspect of the plant if that's the drug you are considering. From what I have heard, it is a horse pill. Usually that is used with people undergoing chemo and I have seen posts also mentioning it used with AIDS patients.

    --Travis

  8. #18
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    Hi Travis,
    I'm not sure if this is a sythetic form of the drug or the natural form of the drug to be honest with you. I will have to get more info. from my Epi. I do know that they use this form chemo as you have mentioned because they offered it to
    my aunt who had liver cancer but she told them no way. Here's wishing you well and May God Bless You!

    Sue

  9. #19
    Community Member Firehorse's Avatar
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    Hi Sue,

    I regret to hear about the difficulties you are having with increased seizures, and any changes thereof. However, I did want you to know there may indeed be some helpful properties to Medicinal Mariiuana (MM) for those who have seizures. I have found this to be true for triggers related to stress. I find it relaxes me, sometimes preventing a simple partial from generalizing into a tonic clonics. My epi has also totally cooperated with me supplementing my former prescription with it, and says in cases where it does not trigger szs, it can help. My sz frequency, at least the TCs are 9 months between. SPs, well, I'm working on those.

    About the classification of MM, though it is classified as a hallucinogen, it hardly causes one to hallucinate. (I have never noticed any. Perhaps a much more potent dose? Lol) I would think the person would fall asleep if they took enough to hallucinate. Those are the "old DEA" classifications for Marijuana, that are still used today. They still even place it as more dangerous than crack cocaine because it is a "introductory drug". Ridiculous!
    Firehorse

  10. #20
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    Hi Firehorse,
    Thanks for all of the info. you have given me about MM I really appreciate all of your help. I have been told that THC is in both MM (medical marijuana) and also in Depakote. Years ago I took Depakote and it worked really well for me until my body
    became immune to the drug. I later had DNA tests done and found I am now drug resistant to any sz. meds out on the market so I don't know for sure but I don't think MM will help me much. Thanks for your help. I wish you only the best and May
    God Bless You!

    Sue

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