NeuroTalk Support Groups - LDN Information & Check In

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- - LDN Information & Check In (https://www.neurotalk.org/multiple-sclerosis/50240-ldn-information-check.html)

mom2five,
I have had headaches in the front of my head, that may last for two hours, when I first get up in the morning. Maybe once a week now. After my caffeine, fix it goes away. :)

When I was having 4 exacerbations a year, one overlapping the other, I had them daily for years. I blame MS for these. That is unless I know I have a sinus infection, which is pretty obvious. Then I need a Anti-B.

I have only just has my third LDN pill tonight, still at 1.5 mg only, until I get used to it and find I don't have any bad reactions. Then I will double it. I am keeping a journal for each day.

So far my DH just said I haven't been snoring for two days. I find I wake up a second or two and go right back to sleep. This happens a few times, weird? I am not sure if it is connected.
Lady

PS: You have been so busy and with 5 kiddies that's a lot of work. Your weather changed also, so maybe it is a pressure headache.

My ENT doctor said to hold both nostrils closed and blow. The both ears should pop, and change the barometric pressure in the sinus area that has too much of a vacuum-like pressure effect. Your ears normally pop abut 100 times a day by themselves. Like when eating, chewing, swallowing, talking or yawning, etc. Doing this sometimes clears the headache in minutes. Amazing.
Lady

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Quote:

Originally Posted by mom2five (Post 429322)

I have a question for all of you...Has anyone had troubles with early morning headaches on the LDN? If so, do you think it was the LDN or something else?

Yes, I did have headaches for the first several weeks on LDN. I don't remember how long that side-effect lasted, or if the headaches were only in the morning, but I do remember having them. They started when I started on LDN though . . .

Eventually they just let up. :)

Quote:

Originally Posted by Lady (Post 429648)

mom2five,
So far my DH just said I haven't been snoring for two days. I find I wake up a second or two and go right back to sleep. This happens a few times, weird? I am not sure if it is connected.
Lady

I am a light sleeper (even before LDN), and since LDN, I need much less sleep at one time. The first few days on 3.0mg, I don't think I got more than about 4 hrs sleep at night, but I still felt great the next day. :cool: I still need my afternoon nap most days though . . .

Cherie

See message below I goofed lol

Dr. Skip said to go down on the LDN for a while then go back up on it and see if that helps. I have some potassum so I will try that also. What is DVT? My legs are not red. I stretch all the time. Thanks for all your help.[/QUOTE]

Quote:

Originally Posted by Lady (Post 429648)

My ENT doctor said to hold both nostrils closed and blow. The both ears should pop, and change the barometric pressure in the sinus area that has too much of a vacuum-like pressure effect. Your ears normally pop abut 100 times a day by themselves. Like when eating, chewing, swallowing, talking or yawning, etc. Doing this sometimes clears the headache in minutes. Amazing.
Lady

Thanks for this, Lady. I just tried it and it does work..:) :hug:

I talked to Dr. Skip and I've sent in my script. I'm going to start at 1.5 mg and give LDN another go. Will let you all know how it goes. :)

I posted these quick and dirty answers to someone's questions, WAY back on about page 35 of this thread:

Quote:

Originally Posted by lady_express_44 (Post 365205)

Welcome, mamaD.

I'll give the most abbreviated version answers I can, for someone who may prefer that. ;)

1. Your neuro doesn't have to prescribe this?

Not necessarily. Your GP is more likely to be aware of this drug, as well as its safety profile. I would still come prepared with information from the Low Dose Naltrexone site (which means you SHOULD read and understand this information).

2. Any sides?

Start off slow at 1.5 mg, then 3.0mg, then 4.5mg. Side-effects are normally very minor to non-existent when gradually increasing dosage.

Can have slight “rush”, headache and/or nausea the first week or so. Make sure to take it down with a glass of water.

MAY 'stir up' MS symptoms initially (usually no more then 3 weeks), while your body attempts to *re-boot* (lack of a better word).

May experience "lively" dreams; most often a temporary side-effect. Not scary though, like some antibiotics are. :eek: :)

If side-effects become troublesome upon increasing dosage, go back down for a week or two, then try again.

NOTE: LDN IS NOT TO BE COMBINED WITH NARCOTICS, CODEINE OR CRABS.

3. Cost - more or less than Tysabri?

Tysabri is $50,000 - $100,00 a year. LDN is about $10 – $20 per month (but sometimes not covered by your insurance.)

4. Really can notice changes? That is exciting.

For me (almost 18 yrs into the disease; RRMS):

- spasticity PAIN, gone
- claw hand, gone
- fatigue, improved
- better attitude and energy levels
- bladder/bowel function, improved substantially
- able to go off antidepressants (lost 30 lbs)
- take NO other symptom mgmt drugs, except occasional Naproxen
- reduced EDSS (disability) by one point in 9 months
- remained disease progression stable
- have had one attack in 3 ½ yrs, due to an untreated infection. (Was experiencing 4 attacks per year when I went on LDN)

BTW, LDN can be combined with Copaxone (if desired), and is being used "off-label" for MS. Discuss your current meds with Skip of Skip's Pharmacy in Florida. He is GREAT at explaining things, and most experienced at compounding it.

Thought I'd re-post it as some of the same questions are coming up again. :p

Good luck, Desinie!

Cherie

jnet1589
Don't take Potassium pills unless your doctor does blood work on you. Steroids do lower Potassium, as salt is increased from the the steroids. That has happened to me. They usually can do a quick blood test for this. Before and after they do mine.

For leg cramps, I increase my Potassium with foods that are high in it, like bananas, potatoes, spinach, yogurt and many other foods.:)

Better for you. Google potassium in foods and get a list. Yogurt gives you calcium also. Calcium aids with sleep and spasms. Like the old Grandma saying, have a glass a warm milk before bed. That was because calcium relaxes and calms the nerves. Grandma never knew why. :) Even hot cocoa and milk works.
Lady

Thanks for the info Cherie. I know very little about LDN. :)

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I've heard another good vitamin/mineral for spasms, is Magnesium. Calcim and Mag are often combined in one pill/capsule.

Very true Sally. :) I take the combo Vitamin pill. Calcium, Magnesium and Zinc. Then Vitamin D and B-12 and some others also. I take the RDA amount or a little more. I don't take huge amounts of any of them. All are taken on the advice of my MS Specialist. The reason is because of my 20+ years of using oral steroids on and off. And a few times IVSM.

I did have a bone density test recently, so far so good. These Vitamin/Minerals are good for the bones especially with age and steroid use. Always ask your doctor first before taking anything. Even Vitamins can interfere with some medication you may be taking. Some vitamins and/or Herbs are bad for MS.

Magnesium is good but if you take too much, diarrhea will result. :eek: I am sure you have heard of "Milk of Magnesia". The laxative.:)
Lady

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