Starting taking LDN (Low dose Naltrexone)

General General TN & GPN (Old Site)
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Hi everyone,

I've been diagnosed with RRMS since 2000. I also have Trigeminal neuralgia . I have been very active since my diagnosis and have been taking the latest MS medication (Plegridy) which I injected every other week.I was also taking Triliptril daily for nerve pain. The trigiminal neuralgia was really my big problem.I experienced periods of very severe pain and anyone who has TN knows what I am talking about.I have had two surgeries in the last few years, Gammaknife and Rhysotomy, both gave me some pain relief but the pain came back. Not too long ago I talked about having Sphenopalatine Nerve Block and once again I had temporary pain relief with the pain returning.I cried myself to sleep many nights thinking I am going to have this chronic pain for the rest of my life.I didn't like taking seizure medications with all the side affects for the pain but they were the only thing to give me pain relief.The pain could hit any time moving my mouth, talking, eating, smiling.

I just thought there has to be something else. I searched the internet and started reading about LDN.Low dose Naltrexone .It is used for people at a higher dose (50mgs)who are addicted to Drugs (Opiates)It is not approved by the FDA for ms however some doctors are prescribing it for their patients.My neurologist has prescribed it for me here in WA.Starting at low dose of 2.5mgs which was increased to 4.5mgs.Once daily.

There are basically no side affects using a low dose.The first night I took it I just felt great.I can only say the reports also say the LDN raises the endorphins in your brain to create the great feeling.I will say I feel great taking it.I began taking it last February 11th.(The date is imbedded on my brain) It is prescribed to take at night however if someone has problem sleeping it can be taking in the morning.Some people reported having weird dreams.(I did not)The LDN has to come from a compounding pharmacy.There are plenty of these kind of pharmacies just ask around where you live.As its not approved by the FDA it is not covered by insurance but it is relatively cheap.I got 3 months supply for $70.I do not take any other medications.It is not supposed to repair any damage done by MS but its is reported it can prevent any further progression.I did have an MRI since starting on LDN and there were no changes.I am scheduled to have my next MRI in a couple of months. I feel great and have plenty of energy.I am currently pain free. I last took pain medication in February.

I was nervous stopping Triliptril (for nerve pain) when I started LDN but the fear subsided when I realised I didn't have the pain anymore and I could brush my teeth properly or lie on my right side of my face.

I am fully aware LDN does not cure MS or Trigiminal Neuralgia but I was ready to take a chance. I read up on a lot of literature supporting LDN and So far I feel great, I have no side affects and I have no pain. It has really changed my life.

Talk to your Neurologist about Low Dose Naltrexone. Web sites I found helpful were (LDN aware) (Ldners.org) Good Luck Angela
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I attended a pain management meeting earlier this week organised by a chronic pain charity here in Ireland. This LDN was spoken about during the meeting. The speaker said they couldn’t put it in the presentation as the charity is sponsored by some connection to it but he wanted to take the time to speak about it ‘off record’’. Three people came forward to say they are taking it for different reasons. Ms, fibro and arthritis were these people’s problems ( I was the only one there with TN) but they could not say enough good things about it for their pain levels. One woman sore she was given her life back. It is not approved here either, there are about 5 doctors the speaker said that will prescribe it and only one pharmacy my side of the country that will fill the prescription and it’s suppose to be very very expensive here. I must look into it more. Strange it’s popped up twice in one week in my travels :slight_smile: thank you for the information given and your story with LDN

Kind regards
Suzi

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Thank you for sharing I am very opposed to drugs that haven't been on the market for at least 15 years but you have really given me something to think about I think i will ask my Dr, about the LDN and see his views. MS and TN what a nightmare I am so sorry you have suffered so long but so happy to hear you're pain free and I hope that is your new and only diagnosis