Guest guest Posted September 13, 2010 Report Share Posted September 13, 2010 Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2010 Report Share Posted September 13, 2010 Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Thank you, Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2010 Report Share Posted September 13, 2010 I can't answer your question, but can see it is a concern. what thought I had was to contact the pharmist where you got your LDN. I got mine from a Compounding pharmacy, and they were very helpful with questions in general that i had. rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2010 Report Share Posted September 13, 2010 Yes, thank you very much for your reply. I did speak with the pharmacist for about a half an hour. She cross referenced all my medications for interactions, and explained that I may have " crazy dreams " as I up my dosage. I have not yet on the 1.5mg. Tonight is the night I am to move up my dose to 3.0mg. My doc called the new prescription into Skipp's today, so he must have approved. He has my latest blood work, so perhaps Mannasal I should just trust. . Aaaaaaaaaaaaaaaaaahh lol I'm nervous but will move forward. Lindsey On Mon, Sep 13, 2010 at 9:12 PM, <mannasal@...> wrote: > > > I can't answer your question, but can see it is a concern. what thought I > had was to contact the pharmist where you got your LDN. I got mine from a > Compounding pharmacy, and they were very helpful with questions in general > that i had. > > rheumatic Re: [low dose naltrexone] and epilepsy > > Hi everyone. > > I have a question. I have just started LDN at 1.5 mg and tonight I am going > to be raising it to 3 mg. Among several ailments, I have a form of epilepsy > that I developed during puberty that causes me to have grand mal seizures > that only occur during the REM stages of sleep. Technically called... " right > focal motor nocturnal seizures. " I am very fortunate that it is mild. My > Grand Mal seizures have been completely controlled by Carbatrol (sp?) which > I have been taking for 20 years. > > From what I thus far understand, LDN works on the endorphins that get > released after you go to sleep between 10pm and 2am. I am concerned that by > altering or increasing the natural endorphin pattern in my sleep I might > possibly trigger a seizure?? > > I guess my question is, does anyone here have epilepsy and if so, have you > ever had a problem with seizures since starting or increasing the level of > your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but > I am throwing it out there because I'm a bit worried. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 yea, trust is a big one......for any journey we are on (and many times the hardest!) since LDN (6 wks) I have lots and lots of dreams, vivid and can remember them next day. also, I'm having very deep sleep...much better sleep before LDN. I want the pain to stop. will you eventually go to 4.5mg of LDn? good luck, sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 I meant to say, my sleep much better since taking LDN. sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 Hello Sally, Yes, the hardest for sure. I wondered about the " vivid dreams " Sally. My doctor said when I increased my dosage I might experience that but did not last night. I did took the leap of faith and increased dosage of 3.0 last night. I actually got 5 hours last night!! I am thrilled. I haven't slept for over 3 hours in a row in years. I didn't have any issues with my epilepsy either. Very grateful. I have noticed also in this first full week on 1.5mg that my vision has improved substantially. I do not need to wear my cheaters (magnifiers 175) at all. Yes, I believe Dr. Ahner will increase me to the 4.5mg dose. We are slowly stepping up. Is that what you take now? Lindsey On Tue, Sep 14, 2010 at 1:39 PM, <mannasal@...> wrote: > > > > yea, trust is a big one......for any journey we are on (and many times the > hardest!) since LDN (6 wks) I have lots and lots of dreams, vivid and can > remember them next day. also, I'm having very deep sleep...much better sleep > before LDN. I want the pain to stop. > will you eventually go to 4.5mg of LDn? good luck, sally > > > rheumatic Re: [low dose naltrexone] and epilepsy > > Hi everyone. > > I have a question. I have just started LDN at 1.5 mg and tonight I am going > to be raising it to 3 mg. Among several ailments, I have a form of epilepsy > that I developed during puberty that causes me to have grand mal seizures > that only occur during the REM stages of sleep. Technically called... " right > focal motor nocturnal seizures. " I am very fortunate that it is mild. My > Grand Mal seizures have been completely controlled by Carbatrol (sp?) which > I have been taking for 20 years. > > From what I thus far understand, LDN works on the endorphins that get > released after you go to sleep between 10pm and 2am. I am concerned that by > altering or increasing the natural endorphin pattern in my sleep I might > possibly trigger a seizure?? > > I guess my question is, does anyone here have epilepsy and if so, have you > ever had a problem with seizures since starting or increasing the level of > your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but > I am throwing it out there because I'm a bit worried. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 Thank you Sally. I'm glad for you. On Tue, Sep 14, 2010 at 2:10 PM, <mannasal@...> wrote: > > > I meant to say, my sleep much better since taking LDN. sally > > rheumatic Re: [low dose naltrexone] and epilepsy > > Hi everyone. > > I have a question. I have just started LDN at 1.5 mg and tonight I am going > to be raising it to 3 mg. Among several ailments, I have a form of epilepsy > that I developed during puberty that causes me to have grand mal seizures > that only occur during the REM stages of sleep. Technically called... " right > focal motor nocturnal seizures. " I am very fortunate that it is mild. My > Grand Mal seizures have been completely controlled by Carbatrol (sp?) which > I have been taking for 20 years. > > From what I thus far understand, LDN works on the endorphins that get > released after you go to sleep between 10pm and 2am. I am concerned that by > altering or increasing the natural endorphin pattern in my sleep I might > possibly trigger a seizure?? > > I guess my question is, does anyone here have epilepsy and if so, have you > ever had a problem with seizures since starting or increasing the level of > your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but > I am throwing it out there because I'm a bit worried. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 better vision...that's great. i started at 1.5mg and within 3 weeks, went to 4.5mg. I can relate to you thrilled about 5 hrs. sleep....I wake up less and if i do, go back to sleep easier. Sometimes I wake up and it's light outside and I'm amazed that I slept to daylight. My body doesn't get up until 10 or 11 am....and I even have 2 hrs. deep sleep during morning time. I think that is real good and important, as that is when healing takes place.....so sleep well, sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 Yes, and we ll need lots of healing. I sleep best in the daylight. lol I am hoping for more good things to come. Do you take Mino too? Thank you Sally! On Tue, Sep 14, 2010 at 2:23 PM, <mannasal@...> wrote: > > > better vision...that's great. i started at 1.5mg and within 3 weeks, went > to 4.5mg. I can relate to you thrilled about 5 hrs. sleep....I wake up less > and if i do, go back to sleep easier. Sometimes I wake up and it's light > outside and I'm amazed that I slept to daylight. My body doesn't get up > until 10 or 11 am....and I even have 2 hrs. deep sleep during morning time. > I think that is real good and important, as that is when healing takes > place.....so sleep well, sally > > > rheumatic Re: [low dose naltrexone] and epilepsy > > Hi everyone. > > I have a question. I have just started LDN at 1.5 mg and tonight I am going > to be raising it to 3 mg. Among several ailments, I have a form of epilepsy > that I developed during puberty that causes me to have grand mal seizures > that only occur during the REM stages of sleep. Technically called... " right > focal motor nocturnal seizures. " I am very fortunate that it is mild. My > Grand Mal seizures have been completely controlled by Carbatrol (sp?) which > I have been taking for 20 years. > > From what I thus far understand, LDN works on the endorphins that get > released after you go to sleep between 10pm and 2am. I am concerned that by > altering or increasing the natural endorphin pattern in my sleep I might > possibly trigger a seizure?? > > I guess my question is, does anyone here have epilepsy and if so, have you > ever had a problem with seizures since starting or increasing the level of > your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but > I am throwing it out there because I'm a bit worried. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 I'm on AP for 11 weeks now. Taking Teva brand on minocyklin. haven't done any IVs....knowing that it would help. Feel pretty crappy(ier) right now. sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 still too early to tell, it takes several months to really feel the effect of the minocin. Eva > I can't answer your question, but can see it is a concern. what thought I had was to contact the pharmist where you got your LDN. I got mine from a Compounding pharmacy, and they were very helpful with questions in general that i had. rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 Think you may be detoxing / herxing. I have read how that happens... worse before better. Have you been tested for Lyme's sally? I havent started AP yet just LDN at this point but up to 3.0. My doc is testing now for lyme's. On Wed, Sep 15, 2010 at 9:20 PM, <mannasal@...> wrote: > > > I'm on AP for 11 weeks now. Taking Teva brand on minocyklin. haven't done > any IVs....knowing that it would help. Feel pretty crappy(ier) right now. > sally > > > rheumatic Re: [low dose naltrexone] and epilepsy > > Hi everyone. > > I have a question. I have just started LDN at 1.5 mg and tonight I am going > to be raising it to 3 mg. Among several ailments, I have a form of epilepsy > that I developed during puberty that causes me to have grand mal seizures > that only occur during the REM stages of sleep. Technically called... " right > focal motor nocturnal seizures. " I am very fortunate that it is mild. My > Grand Mal seizures have been completely controlled by Carbatrol (sp?) which > I have been taking for 20 years. > > From what I thus far understand, LDN works on the endorphins that get > released after you go to sleep between 10pm and 2am. I am concerned that by > altering or increasing the natural endorphin pattern in my sleep I might > possibly trigger a seizure?? > > I guess my question is, does anyone here have epilepsy and if so, have you > ever had a problem with seizures since starting or increasing the level of > your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but > I am throwing it out there because I'm a bit worried. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 hi lindsey, a few months after this RA slammed by body, i was urged by a friend (who was in bed almost 3 years with RA symptoms) to get tested for lymes. that what she had. i went to local doc and test came back negative, however, i heard you have to have special test to truly find out if it is lymes. i remember maybe 10 yrs ago ?? i had something on my back under my shoulder. few days later i went for acupunture treatment and asked that he see what was on my back. it was a tick! he took it out and i didn't give it anymore thought. these past few days I've been dealing with a boil on my back below shoulder, feeling like close to location to where tick was. althought i tested positive for RA, and say this is lymes.....is it necessary to find out, or with the AP i'm on also kill the lymes mycrobs??? any input out there?? thanks to all, sally. lindsey, keep us posted on AP when you start. rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 I tested positive for RA and Lyme's, and took 100mg of Minocin for close to three years and all symptoms went away. My Raynaud's and sausage fingers were gone within three months. I am not convinced I have both diseases inspite of positive tests; i.e., I believe I have Lyme's but the RA may be the result of Lyme's. I see my MD on the 22nd and will ask him about the new CCP blood test to see if I really have RA. I think its good/nice to find out for sure if you have Lyme's because if you have it I think you have to be diligent for life with that beast, but, if you can't afford the test or find a Lyme-literate/supportive doctor, taking the AP is a good step as it will help with both. El _____ From: rheumatic [mailto:rheumatic ] On Behalf Of mannasal@... Sent: Thursday, September 16, 2010 3:03 PM rheumatic Subject: Re: rheumatic Re: [low dose naltrexone] and epilepsy hi lindsey, a few months after this RA slammed by body, i was urged by a friend (who was in bed almost 3 years with RA symptoms) to get tested for lymes. that what she had. i went to local doc and test came back negative, however, i heard you have to have special test to truly find out if it is lymes. i remember maybe 10 yrs ago ?? i had something on my back under my shoulder. few days later i went for acupunture treatment and asked that he see what was on my back. it was a tick! he took it out and i didn't give it anymore thought. these past few days I've been dealing with a boil on my back below shoulder, feeling like close to location to where tick was. althought i tested positive for RA, and say this is lymes.....is it necessary to find out, or with the AP i'm on also kill the lymes mycrobs??? any input out there?? thanks to all, sally. lindsey, keep us posted on AP when you start. rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 thanks El, i have a doc friend here I'll talk to about getting a vallid lymes test done. were you real bad with the ra and lymes? how are you now? sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 I will Sally.. thank you. So many changes and new information. Overload..lol. I see Ahner in a week and a half to go over my blood work. Grateful!! So glad all of you are out there! On Thu, Sep 16, 2010 at 3:03 PM, <mannasal@...> wrote: > > > > hi lindsey, > a few months after this RA slammed by body, i was urged by a friend (who > was in bed almost 3 years with RA symptoms) to get tested for lymes. that > what she had. i went to local doc and test came back negative, however, i > heard you have to have special test to truly find out if it is lymes. i > remember maybe 10 yrs ago ?? i had something on my back under my shoulder. > few days later i went for acupunture treatment and asked that he see what > was on my back. it was a tick! he took it out and i didn't give it anymore > thought. these past few days I've been dealing with a boil on my back below > shoulder, feeling like close to location to where tick was. althought i > tested positive for RA, and say this is lymes.....is it necessary to find > out, or with the AP i'm on also kill the lymes mycrobs??? any input out > there?? thanks to all, sally. lindsey, keep us posted on AP when you start. > > > rheumatic Re: [low dose naltrexone] and epilepsy > > Hi everyone. > > I have a question. I have just started LDN at 1.5 mg and tonight I am going > to be raising it to 3 mg. Among several ailments, I have a form of epilepsy > that I developed during puberty that causes me to have grand mal seizures > that only occur during the REM stages of sleep. Technically called... " right > focal motor nocturnal seizures. " I am very fortunate that it is mild. My > Grand Mal seizures have been completely controlled by Carbatrol (sp?) which > I have been taking for 20 years. > > From what I thus far understand, LDN works on the endorphins that get > released after you go to sleep between 10pm and 2am. I am concerned that by > altering or increasing the natural endorphin pattern in my sleep I might > possibly trigger a seizure?? > > I guess my question is, does anyone here have epilepsy and if so, have you > ever had a problem with seizures since starting or increasing the level of > your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but > I am throwing it out there because I'm a bit worried. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 I'm not sure I had long to live! I'd been going to an acupuncturist for my sausage fingers and fatigue etc. for several years but it did not take care of the problem. The Minocin was a God-send although I realized it was hard on my liver. I also realized the Minocin might put the Lyme's in remission but it would not eliminate it. So I continue to work very hard on diet, exercise, and immune boosting treatments to help my system keep the bug in check. I am really good now. I do have aches and pains --- usually from hard work in the yard or around the house --- and go to my acupuncturist on a regular basis. I also see a PT that practices IMT and helps me clear things my body is dealing with; i.e., I had an old filling removed and am now trying to rid myself of mercury. So it's always something! But I feel it's all conquerable!!! The Lyme's test I took is Igenex Western Blot. It showed I had Lyme's antibodies so it was conclusive for me. _____ From: rheumatic [mailto:rheumatic ] On Behalf Of mannasal@... Sent: Thursday, September 16, 2010 4:21 PM rheumatic Subject: Re: rheumatic Re: [low dose naltrexone] and epilepsy thanks El, i have a doc friend here I'll talk to about getting a vallid lymes test done. were you real bad with the ra and lymes? how are you now? sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 how happy for you that you are living a good life, and yet the journey never stops....or sounds like it's still conatant to keep ahead of the disease. i eat a wondeful healthy raw diet (cant' exercise) just started PT, and things to boost the immune system....all, of course, not covered by Insurance! It's so insane, we're trying to get well and healthy, not stay sick and on drugs.....and it is costly to do all the good stuff we want to do for ourselves. Hope better times are a comin! sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 Hang in there Sally. Your journey led you here and this is a good place. You may have a long road ahead but you have started and that's a great big deal! You are right about paying out of pocket for everything. I have good insurance but what it pays for is medicine/treatments I won't take. I keep the insurance in case of hospitalization/ER/surgery; I'd love to drop it; I'd love for everyone to drop our insurance and let medicine be between the MD and the patient as it once was but I guess we are not there yet. El _____ From: rheumatic [mailto:rheumatic ] On Behalf Of mannasal@... Sent: Thursday, September 16, 2010 4:50 PM rheumatic Subject: Re: rheumatic Re: [low dose naltrexone] and epilepsy how happy for you that you are living a good life, and yet the journey never stops....or sounds like it's still conatant to keep ahead of the disease. i eat a wondeful healthy raw diet (cant' exercise) just started PT, and things to boost the immune system....all, of course, not covered by Insurance! It's so insane, we're trying to get well and healthy, not stay sick and on drugs.....and it is costly to do all the good stuff we want to do for ourselves. Hope better times are a comin! sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2010 Report Share Posted September 17, 2010 again thanks El, doc friend of mine (now only practicing alternatives) has good source in CA, but said longer the symptoms/disease the harder to get an accurate reading. For me at this point, I'll just keep doing what I'm doing with AP, diet, etc. For some days, my body feels like it is hit by a truck, over and over. i've slowly come down from 5mg prednison to 1mg, so this could be causing some havic, plus want to believe AP is working (takes courange and strenth to be celebrating this when I can hardly get around). good news, a " raw food " friend is having deliveries to me a few times a week of wonderful delicious gourmat raw food, so I'm eating better and much easier on me to have to fix my own food. So resting a lot, being in silence, and taking one day at a time. sally rheumatic Re: [low dose naltrexone] and epilepsy Hi everyone. I have a question. I have just started LDN at 1.5 mg and tonight I am going to be raising it to 3 mg. Among several ailments, I have a form of epilepsy that I developed during puberty that causes me to have grand mal seizures that only occur during the REM stages of sleep. Technically called... " right focal motor nocturnal seizures. " I am very fortunate that it is mild. My Grand Mal seizures have been completely controlled by Carbatrol (sp?) which I have been taking for 20 years. From what I thus far understand, LDN works on the endorphins that get released after you go to sleep between 10pm and 2am. I am concerned that by altering or increasing the natural endorphin pattern in my sleep I might possibly trigger a seizure?? I guess my question is, does anyone here have epilepsy and if so, have you ever had a problem with seizures since starting or increasing the level of your LDN dosage? My doctor that prescribed LDN knows about my epilepsy, but I am throwing it out there because I'm a bit worried. Quote Link to comment Share on other sites More sharing options...
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