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Day Seven on LDN

Discussion in 'General Treatment' started by belize44, Apr 12, 2016.

  1. belize44

    belize44 Senior Member

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    Well, I have been taking LDN for seven days, counting today. At first I felt this wonderful sense of contentment and calm, went out and took a walk, then got carried away and cleaned the shower stall. So on the third day I woke to a crash, and spent most of the day sleeping and feeling really ill. The fourth day I decided to start the new supplement my chiropractor sold me, called Drenamin. I'm sure some of you may have heard of it, even taken it. Well, after taking it I grew very irritable and kept breaking into hot flashes followed by sweating.

    That evening, I took half of a 10 mg Flexoril, and a GABA tablet before bed, and applied some of the compounded pain cream (A combo of Gabapentin, Lidocaine, Baclofen and Diclofenac. It was the worst night I have ever passed! I was up until nearly dawn with racing and skipping heartbeats, a pulse rate of nearly 100.

    My speculations are that it may have been a combination of the pain cream, the Flexoril (which the pharmacist said was fine to take with LDN) and the Drenamin. I am now resolved not to apply any more of that cream to my skin no matter how bad the pain, and even have doubts about continuing the Drenamin.

    Another thing I have noticed is increasing weakness. Has any one else experienced such weakness while taking LDN? I was inclined to attribute the weakness to the PEM but now I am wondering if the LDN is causing it? Input would be appreciated!
     
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  2. *GG*

    *GG* Senior Member

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    I take Flexeril and LDN often, i don't have an issue with it, but I am not sensitive to much as far as meds go!

    GG
     
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  3. PatJ

    PatJ far and free I gaze

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    I've never noticed any weakness with LDN. What's your current dose?

    If you start feeling worse with LDN then it's usually a good idea to stop titrating and wait for a week or two at your current dose. If you still feel worse then you may have found the dose threshold that you should stay below. Most people do fine on 4.5mg/day. I tried going that high but had more brain fog and some anxiety. I eventually found that 2.5mg/day is just right. This might be weight dependent since I'm only 110 lbs.

    Keep in mind that most people feel poorly for at least a week after each dose increase but then start to feel better again.

    If you can wait, then give the LDN a try alone for a couple of weeks before mixing in other new treatments.
     
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  4. Mary

    Mary Senior Member

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    I had a bad experience with ldn. I tried it twice, several years apart. The first time I got extremely spacey and had trouble functioning, and stopped it after 3 or 4 days.

    The second time I started with a small dose and went smaller, and kept going smaller, stuck it out for 10 or 11 days and felt truly horrible and fatigued, and finally stopped it. It took me several days to recover. So it's not for everyone.

    My sister who has rheumatoid arthritis tried it for maybe a month, and noticed nothing - go figure! :confused: And she was taking a higher dose than I ever tolerated.

    I know ldn helps a lot of people but I don't believe it is for everyone.

    I did have a very good experience with Drenamin, but again we're all different. I don't know how the several things you took together could have interacted to cause your horrible sleepless night. For me, so much is trial and error, and it's best when I can do one new thing at a time so I can tell exactly what is doing what to me. Good luck!
     
  5. belize44

    belize44 Senior Member

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    Thanks for the input!

    @PatJ, I have just started at 1.5 mg each day. My doc was going to have me at this dose for a month before raising it. I will definitely not mix anything else with it for awhile!
    @Mary: I appreciate your story! I am beginning to feel that LDN may not be for me, either. I had a few good days at first, but now I am tired all the time and spaced out. I had to spend most of today sleeping and still feel tired.

    I am going to try taking the LDN at bedtime instead of at noon as I have been doing and if I still feel lousy, I may have to stop it for now. Sigh. And I strongly suspect that the bad reaction may have come from the compounded pain cream. I just read up on it, (which I should have done before having the script filled,) and realize that with my sensitivities it is definitely a no-no.
     
  6. PatJ

    PatJ far and free I gaze

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    LDN taken in the day can cause a form of depression for some people. Taking it at night (between 10pm and 2am) means you sleep through that effect. I've found that taking it at midnight works best for me. I wake up, squirt the syringe in my mouth, swallow, and go back to sleep.

    Don't give up too soon. 1.5mg may be too high to start with. I started on 0.125mg and increased by that amount every few days. I didn't have any of the side effects that I've read about when people start or increase the dose too quickly.
     
  7. belize44

    belize44 Senior Member

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    That sounds like something I could try! I may reduce the dosage, too. Not sure yet, need to rethink this awhile.:)
     
  8. Misfit Toy

    Misfit Toy Senior Member

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    I think taking all of that at once would totally make me sick. LDN, which you are just starting, Flexoril, which makes me NUTS....it was once an antidepressant that they then marketed as a muscle relaxer, but it affects serotonin big time. It made my heart fly...and then the Dremamine plus a cream....No can do.

    My body would be sick as a dog. I have to try one thing at a time for about a week before I can add all of that and LDN when starting can be difficult.
     
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  9. belize44

    belize44 Senior Member

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    You're probably right, at that. The only reason I took the Flexoril was because the pharmacist said that it was fine to take with LDN. I asked him about taking Xanax, and he said that was fine also. So in order to sleep well the next night, I took one half of a 0.5 Xanax, and was so hung over and feeling ill the next day!

    Even worse, I came across this about compounded pain creams:
    http://www.consumermedsafety.org/me...harmacies-but-risky-for-patients-and-children

    Even though I told the Rheumatologist that I had an adrenaline rush whenever I went to the dentist and got a shot of Lidocaine, this was still included in the script for the cream. With most of us being extremely sensitive to any kind of drug,this may have been the main culprit in my having such a bad night. I once tried a pain patch that had Lidocaine in it, and got a massive headache from it. I paid a pretty penny for this cream, since my insurance wouldn't cover any compounded drugs and feel as if I have been cheated. :(
     
  10. Chriswolf

    Chriswolf Senior Member

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    That's crazy, I'm also on day seven.

    Immediately I've noticed a benefit in terms of how well I sleep, I understand some people don't sleep too well on it, however I've noticed I sleep very soundly now, it is really nice to wake up and not feel like my heart is racing as if I've been running instead of sleeping the whole night.

    I also have not cracked the 1ml/mg mark for dosing because my 23 and me report stated I have a heightened sensitivity to medication, and I believe it considering most medications I take at standard doses feel like way too much. I started at 0.5ml/mg and I noticed a pronounced difference from that alone, I don't know if I could even make it to 2ml/mg without crossing my tolerance threshold.

    In general I seem to have better energy levels overall as opposed to not taking it, which is crazy to me since I've only been taking it such a short time.

    I also had a crash a few days in, as I overdid it a little because I immediately felt so good. For four straight days I was up and doing normal-people things, even going out on the fourth night, only to wake up and feel like I had been thrown into a woodchipper the next morning.

    I am worried about some side effects however, I was taking it with the hope of it also helping the sjogrens-type symptoms that I've been experiencing, only I've noticed they've actually gotten slightly worse.

    It is the only side effect I've experienced at all, and I find that puzzling because since I've been on the LDN my muscle and joint pain has reduced considerably.

    Has anyone else heard of LDN increasing incidence of dry mouth, eyes, and GI tract, etc?

    If so, is there anything I can do to offset that?
     
    Last edited: Apr 13, 2016
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  11. belize44

    belize44 Senior Member

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    I slept well the first three or four nights, but last night I decided to take my dose before bed instead of during the day. Worse nights sleep ever! In addition, I got a rip roaring headache in the middle of the night. I had this weird euphoria going on, as well.

    This is how it was on the first couple of days, and I also overdid it and crashed. I wouldn't say woodchipper, more like an industrial strength washing machine!

    This. Very dry eyes, mouth and nose. And my skin is cracking.

    The first few days I experienced less pain and more stamina. Now I am feeling as if I have the flu, and am experiencing more aches and pains again.
     
  12. Chriswolf

    Chriswolf Senior Member

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    I'm sorry to hear about your difficulties with LDN, I wouldn't recommend giving it up, however perhaps titrating down?

    I can only imagine that I would not tolerate over a miligram very well at this point.

    I actually do take my 0.5 right before I settle in, I also make sure that I'm properly tired before I do, which is a pain because I have to get up and dose myself, but it doesn't take long before I start feeling tired again. As somebody else taking LDN has described, you kind can't really "miss your window" otherwise it can prove difficult to sleep later on.

    People also recommended taking triple magnesium to aid in restful sleep, I myself take magnesium about an hour to 45 minutes before going to bed, just don't take calcium as it interferes with the medication IIRC.

    I've also read that extensive use of analgesics and corticosteroids are not good to use with LDN and may interfere, I'm not sure if that information helps or not.

    Only one night in my experience did I wake up with a massive headache and that was the day I took some choline as I normally have to help with neurological function, I have to lay off the choline as I know when I start pushing it I would get similar effects, the LDN magnified it considerably.

    After stopping the choline I haven't gotten a headache since.

    I'm going to try taking conjugated linoleic acid again and see if that helps with my dehydration symptoms, I helped my dry skin and thirst issues marginally by taking a small amount of sea salt water before bed to help my body retain some water without jacking my blood pressure too much. I found myself feeling less parched upon waking than I did previous mornings.

    I also have put gel eye drops in before sleeping if I thought it was going to be a serious issue the next day.

    Omega 6 seems to help with tear production in sjogren's patients

    http://www.ncbi.nlm.nih.gov/pubmed/16303936
     
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  13. belize44

    belize44 Senior Member

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    @ Chriswolf: Thanks for the pointers! I am going to take a few days off from the LDN, then possibly start again at a lower dosage. I usually do take sea salt water right before bed, because of the POTS; as soon as I lie down my heart rate kicks up a fuss. The sea salt water seems to calm it down. I also always take Magnesium Taurate close to bedtime. I'll just have to keep fine tuning!
     
  14. PatJ

    PatJ far and free I gaze

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    Sleep problems are common for up to a week (including after dose increases) but then you're likely to get better sleep. I'm now sleeping better than I have in a decade. I've only noticed better sleep, possibly because I low-dose titrated.

    The euphoria is common too. I had a few early mornings where I had pleasant multi-hour endorphin rush.

    That's a good sign that the LDN is working. This often happens initially, and after each dose increase. It's as if the immune system now has the ability to start fighting off infections. Each dose increase ramps up that ability again. The flu-like feelings can last up to a week for some people. Those who start or increase too quickly can find the effects too unpleasant and stop taking LDN. I think they just need to start, and increase, at much lower doses. I've only had mild immune reactions from low-dose titrating.
     
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  15. belize44

    belize44 Senior Member

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    So I will probably restart in a day or two, at a much lower dose. I really want this to work!
     
  16. PatJ

    PatJ far and free I gaze

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    When using full Naltrexone tablets and water dilution: 25mg Naltrexone (split 50mg tablet) mixed with 200ml water gives a 0.125mg dose of Naltrexone in 1ml water.

    I should know not to trust my foggy memory. I checked my notes from taking LDN and discovered that I did have some sleep disruption the first few nights, and then it happened at various times as I was increasing the dose. Eventually when my dose stabilized, so did my sleep. I also had some stomach cramps for roughly a week at one point, a film like coating inside my mouth for a few weeks (candida flare-up?), cold spells, and greater fatigue at certain times of the day (more often in the morning).

    I rode out these effects and now think that LDN is the most beneficial medication I've ever taken.
     
    Last edited: Apr 14, 2016
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  17. belize44

    belize44 Senior Member

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    I have had an odd taste in my mouth, too, as well as the stomach cramping. I have compounded capsules at present, which are for the a 1.5 dose. I will have to bring this dose down even smaller, and will use the water titration method.
     
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  18. Chriswolf

    Chriswolf Senior Member

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    Yeah I have the funny taste in my mouth too, I chalk that up mainly to the apparent dehydrating effects of the LDN.

    It now feels as if I'm taking accutane, and so I'm going to try the safest GLA supplement I can to see if I can help with that.
     
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  19. belize44

    belize44 Senior Member

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    I find that Aloe gel helps with general dryness; about one quarter cup before bed or first thing upon rising helps with bowel issues.
     
  20. belize44

    belize44 Senior Member

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    I am going to start the lower dose tomorrow. I have experienced the cold spells where I am bundled up layers of clothing, too. I really want this to work.
     
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