Yeah....I like that word "optimal". Even if I can't feel it working I know it's doing something good! :)

Hi RelynonHim.
I get my LDN capsules in 1.5 mgs in each capsule for now. This way I can play with the dosage. I started on 1.5mg for 10 days to see if I had any allergies to it.

No problems with allergies, so I upped it to two 1.5 mg capsules, totaling now 3.0 mgs at night. I have stayed on that for the last year and a half.

My Neuro said to try 4.5 mgs but each time I did I would get spasms, and leg cramps, so I had to go back to 3.0 mg a night. It works well for me at that level.

Who knows, in the future I may go up again. But if the wheel isn't broken why try to fix it, you know?

As for you question about seizure activity, I really don't know. What kind of seizures are they talking about? I had a long EEG, I fell a sleep during it and she said no, it showed up as a seizure, not sleep.

She said I had myoclonic seizures. To this day I really don't know what they are or how they effect me. I have myoclonic jerks, them I do understand.

I don't believe I have had them in a while, so maybe the LDN helps, I don't know even where to look up seizures and LDN.

Maybe someone else on here has that information to help you. A website to read, or you could call the pharmacy where you get the drug compounded.

Do you take anything for seizures now? Is it Epilepsy type seizures? I hope it helps you too. Good luck.

thanks!
I am not diagnosed with seizures, no medication....I just had that one 20 minute EEG that showed spikes. I have to schedule a 3 day EEG now. I had the EEG because family and friends noticed times when I would just zone out with a blank stare. (seconds only) and I noticed great difficulty with finding words.

When I mentioned it to the neuro....I thought maybe it was MS related.

Lady...have you continued to have seizures? and do you take any seizure med?

I sure hope LDN helps! I am still waiting for it to come in the mail.

Blessings.

ROH, I don't have the regular Epilepsy type seizures. Myoclonic Seizures are massive muscle jerks, as compared to tremors, or small myoclonic jerks. My leg used to jump up high when sitting, my arm would just go out at the elbow, all for no reason at all, and without pain or thought. It just happened.

It is common in MS and other nervous system diseases. This was part of my rule out when I was first tested for MS and had these. No meds for them except Klonopin. Now added LDN.

I still may pick up an object and toss it. It is involuntary, like hiccups, they said. My kids say I can REALLY toss a salad..like across the room. :)

I have them maybe once a week now, and end up flinging or dropping something swiftly. This is what they called them and apparently they show up on an EEG. If I stare or zone out, it hasn't been mentioned to me.

I think when people are in deep thought, very busy thinking of something important, they seem to be zoned out or staring. I call it heavy thinking. You may not even hear someone call you, being so busy thinking or looking for answers in thought. JMO

A new LDN site to check out...:)

http://www.ldnscience.org/

Thank you, Sally! It looks very interesting.....and current! :)

I don't know about that site Sally. It looks more like an advertisement for OGF and they are looking for donations on every page.

If you join the newsletter they probably will hound you with email. JMO

They do discuss LDN, but not too much information on it. I'll have to go back and read more. I am the world's biggest skeptic. :rolleyes:

Did I miss something on that site?

I didn't really check it out, Lady, It came to from a friend, so I trusted it, but with what you have said, I'm deleting the site from my post.:eek:

Thank you..:hug:

EDIT:: Now that I have check it out myself, I see that, even though they ask for donations for research, it still has much to offer in information, so, I put the link back in.:D

I signed up for the newsletter, Sal. I'm sure I can unsubscribe if I choose to. I'll let ya'll know what it contains.....and post anything that seems to be of value to everyone here. :)

I have the Myoclonic seizures in my sleep. At least I assume that's what they are. I jerk so severly I wake myself up. Even the cat moves over to the loveseat that's in my bedroom when I do this! :o

I also "zone out" frequently. Don't know if it's just because I might get sleepy or too deep in thought...but I find myself just sitting and staring - but still deep in thought. Maybe it's just my way of relaxing?

LDN Study Published
 

Here is the first placebo controlled clinical trial LDN study, Completed at the university of Calif and published in the Annals of Neurology


http://www.medicalnewstoday.com/articles/180804.php

Does it say how many people were in the trial? I read it a couple of times but didn't see it. :)

I don't know, but I remember it saying that they still needed a bigger study, because so many people dropped out???

Was this one ever mentioned?

Gironi M, Martinelli-Boneschi F, Sacerdote P, Solaro C, Zaffaroni M, Cavarretta R, Moiola L, Bucello S, Radaelli M, Pilato V, Rodegher M, Cursi M, Franchi S, Martinelli V, Nemni R, Comi G, Martino G
A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis. [Journal Article]
Mult Scler 2008 Sep; 14(8):1076-83.

A sixth month phase II multicenter-pilot trial with a low dose of the opiate antagonist Naltrexone (LDN) has been carried out in 40 patients with primary progressive multiple sclerosis (PPMS). The primary end points were safety and tolerability. Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life.

Clinical and biochemical evaluations were serially performed. Protein concentration of beta-endorphins (BE) and mRNA levels and allelic variants of the mu-opiod receptor gene (OPRM1) were analyzed. Five dropouts and two major adverse events occurred.

The remaining adverse events did not interfere with daily living. Neurological disability progressed in only one patient. A significant reduction of spasticity was measured at the end of the trial.

BE concentration increased during the trial, but no association was found between OPRM1 variants and improvement of spasticity. Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS.

http://www.unboundmedicine.com/medli...ple_sclerosis_

Yes, Lady, I did read about that one. I believe that one was in Italy over a year ago....fantastic!!! Thanks.

Question for all my fellow LDN users:

The doctor that prescribes my LDN told me that if I'm in a flare or if I'm having severe sx that I could take an extra LDN capsule when I get up in the morning.

Has anyone tried this? I haven't.....but I'm considering it......but just wanted to check with ya'll first to see if anyone can give me some guidance.

I have some oral Prednisone but have been told that it's not wise to take Pred for ON.

He has told others that. I don't think it will hurt (TEMPORARILY) but I doubt it will help much. It doesn't really go with the theory of how LDN helps us, but Dr Bahari has done it, on a temporary basis.

I've never done it but I'm not knocking it. I hope it helps..:hug:

I might just try it tomorrow. I as worried about it keeping me up at night....but maybe if I take the extra one early in the day it won't bother me.

Kitty, you are in a relapse, or have O.N., or both? I must have missed it on here. You now take 4.5 mgs of LDN and you are considering taking another 1.5 mgs in the morning? Did I get any of this right? :confused:

Sorry for all the questions. :)

Oh, yes, Kell, don't take any more than 6mg total. I hope that's what the doc meant. Call Skip if in doubt.

Ya know, Sal, it dawned on me to call Skip and ask him but it was after 7 PM so I figured they were closed. :rolleyes: I'll call tomorrow and see what he says.

Lady, I had ON in my left eye and it cleared up quickly. Then, I got it in my right eye. I remembered the doctor mentioned to me that I could take another LDN capsule on days I felt I needed "help" with my sx. I wish now I had asked him to elaborate more on that suggestion. I didn't ask what mg to take...all I have is 4.5.

My sx are getting better so I doubt I'll take another one yet but I'm still going to call Skip and see what he says. That way I'll know for next time.

Kitty thanks for the information. I thought your O.N. was gone. I think 9 mgs is way too much, IMO.

Also, ask Skip what time he thinks you should take it. You said you changed it to 4 am, when you wake up early, and then you nap later. Maybe you need to find out what time he thinks is best for you.

He said to me, anywhere between 9 pm and 3 am depending what time you go to bed. I take it about one hour before bed, because I go to bed in the wee hours of the morning sometimes.:) So mine is varied when you think about it. I go to bed between 1 and 4 am. I do sleep 8 or 9 hrs though.

I don't know how it can help taking it in the day. It is not for that purpose, I thought. I would love to know what Skip says.

My O.N. doesn't last long so I never had steroids for it because it was mild. Blurry in the middle of a big round yellow circle (Central Scotoma [sp?]). It goes away in two weeks, returns in a day or two, and goes away for good. Weird.

Once in the left eye and twice in the right eye. Never in both at the same time.

I hope your O.N. goes away soon.:hug:

Hi Lady! You described my ON to a "T"! :) It's frustrating but it seems to clear up quickly so I haven't done steroids, either.

I've started taking my LDN when I wake up - anywhere from 1 AM to 4 AM. Usually closer to 1 AM, and it seems to be working well. I was taking it too early, I think. Around 9-10 PM and that was just too early. The way I'm doing it now seems to work well. :)

1AM is a perfect time to take it....when you said morning, I thought you meant 9 or 10am, which would be way too late. IMO 9PM is too early.

You're good..:)

~If The World Didn't Suck, We Would All Fall Off~


Well said - :hug: LOL


~P~

Hi Pink, Welcome to the LDN check-in. If you have any questions about LDN, this is the thread to read, and post on any questions. :)

Sally has a wealth of knowledge about LDN and has been on it about the longest. Cherie, who is busy right now, is in Canada, and has been on it for many years too. Many of us only have been on it for two or more years..

Sally has links, and so does Cherie (Lady_Express_44). We have Larry LDN who posts on here too. So glad you found our link.

My vision is so bad in my right eye that my left eye is having a hard time compensating for it. :( I think I might have tried the IVSM for this episode if I'd had the insurance. I know it's too late now......I'm just impatient for this to clear up.

I'm tired of not being able to drive and depending on DS to either run all my errands or give me a ride.

Okay......whine over. I have too much to be thankful for to wallow in my problems. :winky:

Quote:

Originally Posted by Kitty (Post 639903) My vision is so bad in my right eye that my left eye is having a hard time compensating for it. :( I think I might have tried the IVSM for this episode if I'd had the insurance. I know it's too late now......I'm just impatient for this to clear up. I'm tired of not being able to drive and depending on DS to either run all my errands or give me a ride. Okay......whine over. I have too much to be thankful for to wallow in my problems. :winky:

Kitty, good post. It is important to acknowledge challenges. It is also constructive to wish them gone. That seems to be the ebb and flow of this disease.

Aren’t we lucky? Many serious diseases have symptoms that come, and don’t go away. With us, no matter how lousy the symptom is, there is always credible hope that it will just go away! I think that a good attitude like yours is key in getting over these hurdles.

Kitty, whine away my dear. When will you be able to get Medicare? You are on SSDI aren't you? Is the wait 2 years for medical coverage for you? It seems like it should be up soon, no?

Can you take oral Prednisone? That is pretty inexpensive. Just to help the inflammation go away.

I hope your eyes clear soon. :hug:

Lady, I will be eligible in August 2010 for Medicare. I'm on SSDI and have had to wait 2 years before it becomes effective. Now.....I'm worried about how much $$ they are going to deduct from my SSDI to pay for it. :rolleyes: There is no budge in my budget! I'll have to rework everything on paper and see how I can shuffle things around.

I always thought oral prednisone was a no-no for ON. Maybe I'm mistaken. It does seem logical that it would help with the inflammation.

Kitty are you in a flare? Or just have the attack of ON? I wish you could see a doctor about this.

If it is going away (the ON), with no relapse, then I guess no steroids would be the answer. I thought you were in a relapse, then the steroids would calm things down.

I can't say Kitty, I'm not a doctor.:hug:

Feel better soon, (((((Kelly))))):)

Called Dr S for my LDN script renewal and we got to talking. He asked how I was doing...I said Terrific with the exception of my getting older.

I mentioned that I thought LDN was helping me not to age so fast, because it helps me to feel well. He laughed and said "you'd be suprised at how many people are using LDN as an anti aging med. He doesn't recommend it for that, but... I didn't know that, but I'm not surprised.

We both agreed that Endorphins are wonderful things, and he said that there are many miraculous things happening inside our bodies, that we haven't begun to know.

Anyone else feeling the healing and anti aging effects of LDN?

Funny you should mention this, Sal. I read somewhere (wish I could remember where) that LDN is becoming much more popular......especially as a preventive medicine.

I'd continue to take LDN even if it seemed to stop alleviating my MS symptoms. Thank goodness it hasn't but I think it's doing much more good than just helping with my MS. :)

I wish more people would give LDN a try. I can't imagine what condition I'd be in were it not for LDN.

You might want to consider going back to the 1.5 dosage for a little while. The same thing happened to me when I tried to go from 3.0 to 4.5. It took several attempts to finally be able to tolerate the 4.5 dosage. That's what I'm on now....4.5......but it took me a while. Everyone is different. You can always try again in a few weeks.

I stayed on the 3.0 dosage for several months. Each time I'd try to increase my dosage I'd get the spasticity in my legs. Finally I was able to tolerate it. I've read that 4.5 is the optimal dosage so I really wanted to try and see if I could get there. Some people take 3.0 and stay at that level. It's just whatever works for you. We're all different.

I noticed a big difference as soon as I started taking LDN. Even the 1.5 dosage helped me so I was eager to try 3.0. I upped my dosage from 1.5 to 3.0 after only one week.

Hi Daisy,
I started on 1.5 mg, After ten days I went to 3.0 mgs. I have been on that dosage since 12-2008. I tried to up it to 4.5 mgs and found that is the dosage where I get spasticity. So I went back down to 3.0 mgs and have stayed there.

We are all unique in the way we metabolize any medication. I would go back to the 1.5 mgs for a month if I were you, then try again for 3.0 mgs. Our bodies take time to adjust.

I may never try for 4.5 mgs again, or yet I might, down the road. I don't know. I started to see little benefits and improvements on 1.5 mgs, then more on 3.0 mgs.

You don't notice them until you look backward and say, wow, that is getting better or that is gone. It is easier to look after the fact at improvements, than to wake up and say, what is better today?

That was explained to me because I was in a hurry to see benefits, like we all are, when starting a new medication.

Take it at bedtime. It has a half life of 4 hours (it only works for about the first few hours of sleep. If you stay awake too long after dosing it may not work that night as it is supposed to. JMO

Sally, about that feeling of anti-ageing, I don't know to tell the truth. I do feel that LDN gives us a good, well-being-feeling. It is a mood lifter and pain reliever too.

I don't feel my age. ;) But I wish I could do many things I did in my youth, like dance all night, skate, climb hills, keep going for 18+ hours a day, non-stop, etc. But that is the disease. :cool:

I do feel so much better since on LDN, I have many improvements so I can't complain.

Maybe complaining is a sign of age? :) Maybe we are just all young kids at heart.:grouphug:

Here is Wiki stuff.

What are Endorphins?

Endorphins are endogenous opioid polypeptide compounds. They are produced by the pituitary gland and the hypothalamus in vertebrates during exercise, excitement, pain, consumption of spicy food and orgasm, and they resemble the opiates in their abilities to produce analgesia and a feeling of well-being.

Endorphins work as "natural pain relievers."

The term "endorphin" implies a pharmacological activity (analogous to the activity of the corticosteroid category of biochemicals) as opposed to a specific chemical formulation. It consists of two parts: endo- and -orphin; these are short forms of the words endogenous and morphine, intended to mean "a morphine-like substance originating from within the body."

The term endorphin rush has been adopted in popular speech to refer to feelings of exhilaration brought on by pain, danger, or other forms of stress, supposedly due to the influence of endorphins.

When a nerve impulse reaches the spinal cord, endorphins are released which prevent nerve cells from releasing more pain signals. Immediately after injury, endorphins allow animals to feel a sense of power and control over themselves that allows them to persist with activity for an extended time.

What is Naltrexone and Low Dose Naltrexone? See below link:

http://en.wikipedia.org/wiki/Naltrexone

PS: LDN increases are own Endorphins, while we sleep.

.