Guest guest Posted February 18, 1999 Report Share Posted February 18, 1999 Congratulations! Wonderful news!! Esther ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 I know Im only 1 day over a month in. I started on the 25th of July on my LDN. First, I have FM secondary to CFIDS, idiopathic polyneuropathy, polycystic ovarian syndrome as my primary issues. I have other things listed on the list, but this is what I am here trying LDN for. I also have had terrible mostly increasing insomnia i have been struggling with. I took LDN the first week and botched it on the 3rd and 4th day by thinking I took it, but when I counted my pills realizing I didn't. I then got back on track. I did not have any insomnia. LDN in fact knocked me right out and continued to do so within 10-30 min. of taking it. I would say I had muscle spasms and did start fighting a cold flu thing within the first week of taking it, but it is hard to know if I would have gotten those any way. With any medicine, or even medicines sometimes, the variability of exacerbations of my disease can mask changed caused by anything other than my disease, like infections or medicine. after the first week, it stopped knocking me out immdiately, but it still allowed me to fall asleep easily within the first half hour or sooner of laying down, and fall back asleep within a few minutes of being woken up and maintain sleep. I'm getting good solid sleep and for this reason, even if the original reasons for taking it are not helped by the LDN, I believe I will continue taking it. Insomnia over the past 4 years has at times caused me to feel like I was going crazy or my body and mind was just going to snap under and die. I know it was taking harsh tolls on my bodies health. I am a bit sleepy sometimes in the day but I think that is because I am taking the pill too late at night. sometimes between 1 and 3 am if I forget, though I aim for between 10 and 1. I can say I have not had any miraculous results in energy, spasticity, stamina, clear headedness or pain. If anything I have to wonder if I'm at too high a dose...4.5. My doctor wanted me to start right away at the full dose. I have cut down the dairy and wheat to nearly non-existent, but doing so has dropped my calorie intake under the 900 daily mark so I need to balance possible side effects of blocking of the LDN with the for sure side effects of not consuming enough nutrients and cannot eliminate dairy an wheat entirely right now. (I say so as a preface to all the well meaning people who are going to give me tips on how I should as if I should. tips are great. accepting that it is reasonable that following up on those tips may not always be feasible or possible and its not some sort of lack desire to do what will make me well on my part. Not that I have encountered that here yet, but I have.) ANyway, thats my first check-in. Hope its useful to someone. A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 It's nice to hear from someone who gets sleepy with LDN since so many report sleeping light. 4.5 mg is the highest dose and some find that they do better on 3 mg or even every other day, so do feel married to that dose. For years Dr Bihari prescribed 3 mg as " the " dose. I am on day 10 and have only been at 3 mg for three doses. I am going to stay at 3 mg for awhile and see if I get the relief from seasonal allergies that is probably my most noticeable symptom. I am also taking it for flu prevention. Generally I am sleeping about 6 solid hours by taking 8 mg of Melatonin, 6 mg of that is timed release. After that vivid dreams wake me up, but I go back to sleep, waking up hourly until I finally get up after ~ 8 hours. I also get sleepy after lunch and again after dinner, sometimes take a 1.5 to 2 hour nap and sleep really deep. If I nap after 5 PM then I stay up late. I prefer to get to sleep by 10:30 but can't always keep from taking that early evening nap. I do feel that the LDN is making me sleep more during the day but I am waiting to see if that passes since I am still in the first two weeks. Garnet leyd_dragon wrote: > > > I know Im only 1 day over a month in. I started on the 25th of July on > my LDN. > > First, I have FM secondary to CFIDS, idiopathic polyneuropathy, > polycystic ovarian syndrome as my primary issues. I have other things > listed on the list, but this is what I am here trying LDN for. I also > have had terrible mostly increasing insomnia i have been struggling with. > > I took LDN the first week and botched it on the 3rd and 4th day by > thinking I took it, but when I counted my pills realizing I didn't. I > then got back on track. > > I did not have any insomnia. LDN in fact knocked me right out and > continued to do so within 10-30 min. of taking it. I would say I had > muscle spasms and did start fighting a cold flu thing within the first > week of taking it, but it is hard to know if I would have gotten those > any way. With any medicine, or even medicines sometimes, the variability > of exacerbations of my disease can mask changed caused by anything other > than my disease, like infections or medicine. > > after the first week, it stopped knocking me out immdiately, but it > still allowed me to fall asleep easily within the first half hour or > sooner of laying down, and fall back asleep within a few minutes of > being woken up and maintain sleep. I'm getting good solid sleep and for > this reason, even if the original reasons for taking it are not helped > by the LDN, I believe I will continue taking it. Insomnia over the past > 4 years has at times caused me to feel like I was going crazy or my body > and mind was just going to snap under and die. I know it was taking > harsh tolls on my bodies health. I am a bit sleepy sometimes in the day > but I think that is because I am taking the pill too late at night. > sometimes between 1 and 3 am if I forget, though I aim for between 10 > and 1. > > I can say I have not had any miraculous results in energy, spasticity, > stamina, clear headedness or pain. If anything I have to wonder if I'm > at too high a dose...4.5. > > My doctor wanted me to start right away at the full dose. I have cut > down the dairy and wheat to nearly non-existent, but doing so has > dropped my calorie intake under the 900 daily mark so I need to balance > possible side effects of blocking of the LDN with the for sure side > effects of not consuming enough nutrients and cannot eliminate dairy an > wheat entirely right now. (I say so as a preface to all the well meaning > people who are going to give me tips on how I should as if I should. > tips are great. accepting that it is reasonable that following up on > those tips may not always be feasible or possible and its not some sort > of lack desire to do what will make me well on my part. Not that I have > encountered that here yet, but I have.) > > ANyway, thats my first check-in. Hope its useful to someone. > > A. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Dear A Sometimes it can take a while to see effects from LDN. One person reported it taking over 6 months. Most people are quicker, but I would not worry too much after just a little over a month. For the spasms there are a number of things that can help. If you e-mail me privately I can send you a bunch of e-mails that I have saved from people that have found different solutions on our site. Most are cheap and easy. Some are medicines prescribed by doctors. My e-mail address is Aletha@... if you would like the e-mails forwarded to you. Hang in there, Aletha Quote Link to comment Share on other sites More sharing options...
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