Archive for December, 2009

LDN Day 18 – Dose Reduced to 2ml

So it’s Day 18 of LDN and I’m grateful to Sue‘s comment on side effects for helping to look at things with a fresh perspective.

I’ve felt on such low energy reserves since I started LDN even on night time dosing.  I’m still getting things done but it’s knackering me out really quickly and taking a long rest to access any more spoons

I mean it’s bearable but challenging.  Which is really frustrating as despite it being much busier with Christmas I’ve had a well planned slow paced festive season.  And I still feel shattered.

So. After reading Sue’s comment I remembered how I said I would lower the dose if I was getting bad side effects and then could try raising it slowly.  And on reflection maybe all of this counts as bad side effects.

So. Last night I lowered my dose to 2ml.  We’ll see if that makes a difference in the next week.

Meanwhile I am ready to have relaxed festivities.

I’ll take this chance to wish you all a Merry Christmas or Happy Holidays from Growler, my cat Flyman and me.

merry xmas 2009

Advertisements

LDN – Day 14 Sleepy and Dozey

The night time LDN dosing at 3ml has been going well.  I’ve been sleeping very soundly.

The last 5 or so days though I’ve noticed I’ve been feeling sort of tired in a want sleep sort of a way and that’s increased a little over a few days.  Now I’m feeling pretty tired.  Tiredness in a sleepy way isn’t a usual symptom for me so I’m concluding it’s a side effect. Hopefully it will pass. 

But I think it makes sense to stick at 3ml for a little longer than the 2 weeks recommended maybe. As we’re away at Growler’s folks over christmas and as upping the dose might come with side effects it’s probably best to wait another week or so.

The sleepy/doziness seems to be the main side effect at the moment.

My IBS seems a little better. Not eat what I like better but a bit better.

I’m still a little brain foggy but I  do get then that when I’m tired and/or fatigued.

So no dramatic improvement but still very early days.

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.

LDN Links and Resources

LDN Information Links and Resources

If you want to read up some more about LDN here’s some of the sites and resources I’ve used:

CFS Specific

Dose Timing

Campaigning for LDN

And here’s a dictionary entry that gives a sound file on how to pronounce Naltrexone http://dictionary.reference.com/browse/naltrexone

LDN Day 4 – Switch to Night Time Dosing

It’s day 4 with my LDN and I decided to switch to night time dosing and take a chance of whether it will cause insomonia and/or vivid dreams. Or should I say even more vivid dreams!  I already experience quite vivid dreams often and find sometime they can be very disturbing.  There have been times where I haven’t wanted to go to sleep because I didn’t want the dreams to come.  But I’m going to try LDN at night time and see what happens.

The brain fog was pretty bad yesterday and I have had to go back to writing down absolutely everything I need to do in my notepad or else I forgot all about it.  It was like the early days after diagnosis when my cognitive disfunction was at it’s worst.  For me it’s one of the most distressing symptoms of ME/CFS.

I was trying to explain it to someone last night.  I guess they were trying to make me feel better by telling me “oh I get that” and it was because he’s at home a lot and not using his brain.  This isn’t the same thing.

If I had remembered the counting backwards test I could have given an effective demonstration.  You countbackwards from 100 in sevens.  It demonstrates best for me when I have a non neurologically challenged person do the test too.  Then I start and the amount of brain fog I have seems to relate to how easily I can do this test.

Anyway of course I didn’t remember that.  I couldn’t remember what day it was even.

So, in the interests of seeing if those side effects of brain fog and what not can happen while I am asleep and therefore not when I am trying to do things then that would be great.

I read a testimonial of someone who had been night time dosing and switched to day time.  She decribed feeling fluey and out of sorts with the morning dosing but with night time (and when she switched back again to night) she felt amazing during the day.  Now wouldn’t that be good?  Well I’ll settle for a fraction of that actually.

And if LDN does mess with my sleep or my dreams and I can’t stand it I can always try with morning dosing again.

Lots of theory out there, but not much evidence, so I’ll experiment.

Once I’ve been taking LDN a little longer I intend to add my experience to the LDN Database which is associated with the www.ldnnow.co.uk site. In the meantime there’s a handful of CFS experiences on there http://www.ldndatabase.com/cfs.html

I also got the acid indigestion feeling again yesterday by the evening.  Different to my usual IBS complaints.  I can only think that is the LDN too.  So maybe that will happen overnight too. Fingers crossed.

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 🙂

Let the LDN Commence

My first month’s supply of LDN arrived yesterday by recorded delivery.

I’ve decided to try taking my dose in the mornings.  Conventially it’s advised to take in at night as close to midnight as you can.  But some experts recommend that people with ME/CFS take it in the mornings as they have poor sleep already and LDN can disrupt sleep.

It may be that it makes me very sleepy.  In which case I may switch to trying it at night and seeing if I overcome (or be lucky enough not to have) the vivid dreams and insomnia side effects.  These may give way over a couple of weeks anyway.

Ten minutes ago I took my first dose.  I am already feeling a bit spaced out. Almost a bit drunk.  So I’m writing this fast!

I chose the liquid form of LDN as it is easier to adjust the dose if I don’t tolerate the initial 3mg dose well.

It came with an adminstering syringe so you can take an accurate dose.  This needs to be sterlised between uses.  The hardest part was calculating the maths of how much sterlising fluid we needed to use.

The liquid has a cherry flavouring.  It reminded me of cough medicine as a child.  The cherry is almost pleasant – for the first second it was in my mouth.  Then the bitterness came.  I washed it down with some water but I think I need a drink with more taste to shift it.  It’s not horrible but it’s not yummy either.  Perhaps a square of Dairy Milk chocolate will help …


Fundraising


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.