LDN Day 9 – Side Effects Lessening

It’s day 9 of taking LDN, starting dose of 3ml a day.  I switched to night time dosing 5 days ago and it’s working out much better for me.

No LDN caused insomnia. In fact I am sleeping soundly.

Since switching to night time dosing the side effects have lessened.  Most noticably the emotional lability hasn’t been bothering me and the brain fog is greatly improved.  The tiredness is also less.

I can confirm that it I am getting a certain amount of brain fog, tiredness/weariness, dry mouth, blurred vision and gassy tummy with the LDN.  I know this because on the day when I switched from daytime to night time dosing I had a daytime where I effectively had missed the dose and all these things were not so noticeable.  The tiredness/weariness and tummy symptoms are different to the usual.

I really do need a hundred different ways to describe tiredness/fatigue/weariness.  Because this feeling from LDN is different to the other kinds of knackered I get with straight ME/CFS.

Anyway – night time dosing, plus possibly getting adjusted to the new drug mean that the side effects are getting less and more mangeable.  I managed to do productive things this weekend, although I was left feeling very wiped in the evening and yesterday afternoon.

In 5 days I will up the dose to 4.5mg

I will be staying for 2 nights this week at my dad’s while Growler is away on business.  So last night I practised whether I can adminster my own medicine.  I have to admit I found it quite difficult to use the syringe with the bottle of LDN liquid.  Pulling the syringe is difficult and added in is making sure the bottle doesn’t tip over.  I may need to enlist some help from my dad or his partner.

I put the LDN in a glass so I could take it later on, giving me a chance to rinse and sterilise the syringe long before I needed to take the medicine (as it makes me drowsy fairly quickly).  It was funny seeing the 3ml of LDN in a glass because it really is such a tiny amount.  In the syringe it looks a lot but it’s less than a teaspoon really.  I added a bit of water to make sure I could drink all of it from the glass.  Oh my it tasted nasty with the water.  A spoon full of sugar really would make the medicine go down!

My IBS seems a little better.  I ate something not safe for lunch on Friday and although I had some reaction overall it worked out well.  I had some stomach cramps immediately after eating (lasted about 5-10 mins) and I had some stomach and bowel cramping some hours later (lasted about 10 minutes).  But then that was it.  Which in relative terms is brilliant.  I’m still eating mainly safe stuff but seem to be able to introduce some new stuff.  I am hopeful I will get to eat Christmas dinner!

As for whether it is LDN that is helping IBS and whether it is helping in other ways I think will be something I will only tell from a bigger picture.  It’s still too early to know.  And there’s not been a miracle day of feeling amazing.

But I remain optimistic.


8 Responses to “LDN Day 9 – Side Effects Lessening”

  1. 1 ashysheela December 14, 2009 at 11:34 am

    Day 9 already? Where did that week go? 😉

    I am so pleased things are going well so far. I hope you do NOT get a miracle day or feeling amazing; that suggests it won’t keep happening. I hope you get gradual but definite improvements!

    • 2 rachelcreative December 14, 2009 at 11:50 am

      I only say miracle as with MS sometimes people feel effects very quickly and that positive improvement is sustained whilst they are taking the LDN.

      It’s difficult as I have a feeling this might really help, but I remember feeling that way about D-Ribose and in the end although that does give me an energy boost it is quite minor compared to full fitness. So it might be more optimism than gut feeling. We will see.

  2. 4 Jozephine December 14, 2009 at 7:28 pm

    I’m cheering you on from the sidelines. Go girl!

  3. 5 Sue December 22, 2009 at 3:04 am

    So glad to hear it’s going well so far and you’ve worked out the timing of the dose better.

    I take LDN in pill form now, but when I got a liquid from a local compounding pharmacy at first, the pharmacist said the only flavor he found that covered the nasty taste well is caramel flavoring. It really wasn’t too bad, so you might want to ask your compounder for it!

    As for going up to 4.5 mg, I think you’re smart to wait. I felt better immediately when I started LDN – the very first day – so the fact that you’re having some increased symptoms might mean that even the 3 mg is too high for you. Lots of people with CFS find they need to start lower.

    3 mg works great for me, and when I went up to 4.5 mg, I felt much worse! So, I think it’s all about finding the right dose for you individually. Everyone is different and I think CFS REALLY makes us different!

    I hope you do well with the LDN and enjoy your upcoming visit.


    • 6 rachelcreative December 23, 2009 at 8:36 am

      Thanks Sue. I had always said I would drop the dosage if I was getting problems but it took you reminding me to think actually these side effects might be a bit too wearing. So I think I will drop the dose down a bit and then try and go back up a bit.

      I’m not sure about the caramel but I guess I can ask 🙂

  4. 7 Pete S January 9, 2010 at 5:41 pm

    I’ve just started on LDN and it really keeps me awake at night. (I take it at bed time.) Does anyone have experience with this side-effect and how long it takes to go away?

  1. 1 LDN Day 18 – Dose Reduced to 2ml « ChronicallyMe Trackback on December 23, 2009 at 6:13 pm

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