Originally Posted by mom2five

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?

Originally Posted by Lady

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

Originally Posted by lady_express_44

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.

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.

Originally Posted by Lady

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. I am sure you have heard of "Milk of Magnesia". The laxative.
Lady


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Originally Posted by Lady

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