LDN Day 2

I’m not going to write a post every single dayI take LDN but thought I’d add to yesterday’s report of the first ten minutes with LDN in my system (excited to be taking it much?!).

Mainly I wrote a quick post yesterday to let you all know it had arrived and I’d started taking it because I was feeling pretty sure it would make me feel awful – I was anticipating terrible exhaustion, naseau and being unable to do anything very much at all.

I’m happy to report it hasn’t turned out so bad – so far.

With my first dose 0f 3ml I suddenly felt a bit odd after 3-5 minutes.  I kind of thought that had to be some kind of anxiety thing because I had only just squirted the syringe of medicine into my mouth a few minutes ago.  I sat down just to be safe. 

By the time Growler came to check on 5 minutes or so later I was starting to feeling really weird.  Very spaced out indeed.  It peaked with a feeling a lot like being very very drunk, when you’re sat on the edge of your bed and about to collapse into a sleepy oblivion where the room spins even with your eyes closed.  My vision was quite blurry and I had to give up looking at my laptop because I couldn’t focus with my eyes or my brain.

Over the course of the first hour that feeling peaked and then ebbed away until about an hour and half after taking it I just a little woozy.  Like I’d had a tiny tipple that first little rush of alcohol after not drinking for a long time. 

Growler said I was a curious mix of very pale and sort of flushed at the same time.  And a bit blotchy on the cheeks.  How attractive! My eyes became a bit sore but that could be something else/co-incidence.

A couple of hours after and I felt ok, but was being cautious as I felt a little wiped.  That could have been the LDN or payback from a lot of exertion the day before.

I also seemed to have a bit of a problem with stomach acid and a bit of reflux despite eating usual fairly safe things that day.

When I was getting ready to go to sleep and looked in the mirror I seemed to be a bit pale.  But not exactly unwell pale.  If anything, and I know this is going to sound weird, it was sort of a more colourful pale.  I often think I have a slightly odd pallor with ME/CFS but it’s so hard to tell when it’s the same day in day out.  Well yesterday I looked … different.  I know it sounds odd.

My sleep was very fitful last night.  Not a typical night’s sleep for me.  I was waking and turning over a lot but sort of continuing to see bits of dreams which were flashes and cutting very fast from thing to thing.  We did watch a great action movie in bed last night which probably had a lot to do with the dreams but the fitful thing was unusual enough for me to mention it.

So day 2 continuing with 3ml dose of LDN and a slightly different reaction so far.  Growler mixed the 3ml dose of LDN with my morning 10g dose of  D-Ribose in a small amount of water.  I can’t describe how it tasted mixed together but it kind of woke me up!  It certainly tasted like medicine.

Mixing it helped me to down it in one rather than have it swill around my mouth and being able to taste it for ages.  Maybe that’s why I didn’t get the 1 hr totally spaced out thing today.  Instead I’ve had a mild feeling of spaced out all day.  It was worse for the first 20 mins and for instance I didn’t quite trust myself to get down those stairs safely.  And my vision was a bit blurry. But it was a lot more mild and sort in the background as it is still now. 

I’ve noticed my cognitive disfunction is playing up today but it’s coming and going.  I suddenly hit a patch where things get jumbled or I type the wrong word or I get really lost and confused.  But I have been able to do things inbetween like I can do on a “good” day – surf, email, play scrabble online, even try and figure out national insurance contributions (that’s for another blog post maybe!).

Also I have to remember that I had fitful sleep which alone could explain some of the brain fog today.

I do have a feeling however that I need to take it steady today especially in terms of physically balancing and being able to stand and co-ordinate.

How much is LDN, how much is ME/CFS and how much is me I can’t say.  I suspect only reflecting on the bigger picture will give a clearer picture.  But for now the little details help draw the bigger picture 🙂

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3 Responses to “LDN Day 2”


  1. 1 Sue December 8, 2009 at 12:36 am

    Wow….weird! Typically, the only side effect of LDN is vivid dreams for the first week, though I didn’t even have that.

    The LDN experts say you’re supposed to take it just before bed, so you might try that rather than in the morning. You can read more about it at
    http://www.lowdosenaltrexone.org

    Maybe that’ll help.

    Also, lots of people of CFS start lower, like with 1 – 1.5 mg and work up to 3 mg, so if side effects continue, you could try that, too.

    Good luck – I look forward to hearing more! It’s helped me a lot –

    Sue


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