Does anyone have any experience with or have any information on the use of Medical Marijuana to treat the symptoms of Narcolepsy or Narcolepsy with Cataplexy?
I pose this question because i am begining to become concerned about the effects that my current medications are having on my body. I currently take Provigil for EDS and Prestiq for my Cataplexy. I am noticing pigment changes in my skin…i worry about my kidneys and liver with there not being an end game in sight, as i will be on the medication for the rest of my life. I have family out in Colorado, one of which works at a Medical Marijuana dispensary and have discussed this topic with them at great lengths. He tells me that the Sativa strain will keep me awake during the day and the Indika strain will help me at night. He tells me that i would not have to smoke it, that it would be as simple as eating a piece of chocolate in the morning and in the evening. I have read where this has worked for some? Has anyone heard of this too?
Hi Amie
I have looked at length on the Internet as I am sure you have and not found any solid information. Here in the UK my neurologist is looking into prescribing Sativa for my neurological pain but said that the controls as to which conditions it can be used for are very tight. From what I can see in the US there is more prescribing freedom but whether it would help narcolepsy I cannot tell. Do you have a physician willing to let you try?
Nel
Hi Nel,
Thank you for your response. I do have a doctor that is willing to let me try it out. I was just wanting to bounce it off of others living with similar issues and see if someone had by chance tried it, what their results were. I believe it is an avenue that I will most likely peruse. Fingers crossed! You mentioned your neurological pain; I understand that it is not uncommon for PWN to experience neurological pain. Is yours related to your Narcolepsy? Do you know why this happens?
Thank you for taking the time to respond to my post. I will look forward to hearing from you again soon.
Amie
I don’t have narcolepsy Amie. I am a Ben’s Friends volunteer moderator with a condition called Erythromelalgia, EM for short. I have done my best to learn about narcolepsy and all the difficulties it brings to your lives but of course no-one can truly understand without going through it. Both EM and N with C are diseases which don’t have immediately obvious signs and which we have to live with for years without diagnosis, are not understood by your average physician - in the case of EM totally unheard of - are often little appreciated by family, friends or workmates and turn life on its head, so that much we have in common:)
You are very kind to invest your time to Bens Friends and to helping others. If we have to be saddled with these diseases, we might as well make the best of it. 
You are right that it is difficult for the people in our lives to understand what it is that we go through. (Not a fun thing to have in common, by the way. ) I find the fact that my disease is essentially invisible to them, Is what makes it all the more difficult. Life is funny and we live with the cards we are dealt. I commend you for turning your life with EM into something positive by helping others. Thank you Nel.
You are very welcome. I have been made to feel 'at home' here by all you lovely people:)