LDN Day 58 – I’m Back to 2ml & In Other News

It seems my 2nd attempt to increase my LDN to 3ml resulted in me feeling pretty awful again.

I increased from 2.5ml to 3ml last Sunday (Day 50).

In the next week:

• my pain (particularly neck, shoulders, face/jaw, glands) increased day by day
• I got a bad pre-migraine head for the first time in months and that has hung around for a week
• my IBS flared, I had stomach cramp & a couple of espisodes of exploding bum, meanwhile alternating with my constipation getting worse and by the end of the week I had some nauseau coming on

On Saturday (Day 56) my pain was “argh”. I reduced the dose back to 2ml on Saturday evening.

On Sunday (Day 57) my pain was “urgh”, my IBS was a little better. Today, Monday (Day 58) my pain is a low “derrr”.

It seems to be settling, hopefully, although I’m not clear of the pain just yet. The 3ml does seem to now agree with me too well.  So my rough plan is to take a longer term view and stick with 2ml for a while.  Maybe look at slowly increasing the dosage but not to increase whilst I have any side effects with the current dose.

It’s certainly not easy finding your optimal dose.

I’m hoping the 2ml will help me be a little more stable as I have work (art) I need to do.  I have a painting to finish, a new piece of work on a logo for a new client, some cards to make for friends/family and I want to make some Valentines cards to sell if I haven’t left it too late.

Plus make some birthday cards, wedding cards and so on to sell.  Try and keep a little trickle of income going as I still haven’t had a decision from DLA and so have been relying on my art sales to fund my suppliments, medication and so on since October.

In 2 weeks I am going to my cousin’s birthday celebration all the way up in Cumbria (about 3.5 hours from here).  They are having a  ceilidh and whilst I won’t be dancing it will be nice to meet up with family. 

I also have a dentist appointment the week before – a routine checkup but later than usual as my wonderful dentist has been on maternity leave.  My problem tooth has a chip in it which is worrying as we’re overdue and last time she filled it she said it might need root canal work if this fill didn’t work. Eeek.

Then I have a doctors appointment with My Lovely GP the Monday morning after our weekend in Cumbria to ask about treatment for something I’m not going to blog about right now, to see if she will give my Celevac on prescription as I now use it everyday with my IBS and to update her on LDN.

So you see I could really use a couple of weeks of not feeling as grotty as I have been with this 3ml of LDN!

In other news my clutter busting angel is to become my angel sister-in-law in August! She and my brother got engaged a few weeks ago and it’s all very exciting.  To celebrate at out last clutter busting session she put my wedding dress into it’s special storage box (just three and a half years after I had first intended to do it).

We are still house hunting for a new rental place.  Some of the pressure is off now we have spent the worst of the winter (fuel bill wise) in this draft energy innefficient house. Not only that but probably the worst winter we’ve ever had weather wise since living here! So having swallowed the heating bill the urgency to move is less than it was.  But we do still want to go.  The next problem is that the garden will start to grow and I can’t afford to pay anyone to come and tame it this year.  If I ever get my DLA the plan is to offer my sister in law a bit of paid work doing cleaning and gardening but I’d rather be focusing energy on a new garden.

We’ve seen a few places but none have been right.  House hunting is more difficult now not just because it’s so knackering for me but because I’m looking for a place to spend 98% of my time in.  Finding a house that is nice but a bit dark, or a bit claustrophobic, or with not much of a view of anything, is suddenly more problematic to me.  I swear I am not being super fussy!  So many of these places have such tiny bedrooms or weird layout or dodgey looking renovations or are really expensive.

Hopefully the right place will come along at the right time.  Seeing as how there’s still a lot of clutter and still a massive car boot stash of stuff to sell it’s probably a good job we didn’t see somewhere before Christmas.  It would have a lot of hard work.

There’s some ME/CFS stuff floating around for me this week which may or may not result in some wobbliness.  This is not going to be helped by probably being hormonal this week too.  But I don’t want to go into the details here and now.  Needless to say it’s the usual upset & head spinning from the quacks taking advantage of ME/CFS being in the news recently.  Whether I will keep a straight head or not I don’t know.  I did cry (a lot) at the end of a heart wrenching drama last night so I am guessing there will be a mini crisis this week at some point.  Oh well.  Hopefully there won’t be a shed load of pain to put into the mix too.

LDN Diary

6 Dec 2009 – Day 1: Begin 3ml LDN in morning Dozey, v bad brain fog, IBS/tummy problems.

9 Dec 2009 – Day 4: Switch to night time dosing of 3ml LDN Side effects lessening by Day 9 but still some brain fog, tiredness/weariness, dry mouth, blurred vision and gassy tummy. By day 14 still tired/sleepy, some brain fog. By day 18 concluded energy reserves very low and recovery not as good.

22 Dec 2009 – Day 18:  Reduce to 2ml LDN nightly Perky in the 1st week. Settled & optimisitic, ticking along at Day 30. Then by mid January wondering if lacklustre & unproductive feeling means the dose needs increasing (or is it just because of January?)

15 Jan 2010 – Day 41: Dose up to 2.5ml Slightly more tired but hard to tell as it’s January

24 Jan 2010 – Day 50: Dose up to 3ml Pain, migraine & IBS increase over the next week

30 Jan 2010 – Day 56: Reduce to 2ml nightly Extra pain begins to decrease first couple of days.

LDN Day 55 – Dosage Experiment

Last time I wrote about LDN I was lowering the dose to 2ml nightly because I suspected the tiredness and low energy reserves I was experiencing were possibly due to the 3ml of LDN.

For the first week at 2ml it agreed with me very well in fact I felt positively perky the first few days. 

Now this period of taking 2ml does coincide with Christmas (tiring) and January (traditionally a poor health month since I’ve had ME/CFS). 

So the week after Christmas, the 2nd  week of 2ml, I didn’t feel the same perky benefits.  But there was a sense that maybe this could lead to better things.  Maybe with time I could increase activity slowly and boost where I am on the ME/CFS scale.

By mid January, still on 2ml, that had settled somewhat.  I wrote in my journal that I didn’t feel bad but I didn’t feel brilliant either.  I was a bit lacklustre. I was unproductive.  Maybe that’s a January thing.  or maybe it’s getting used to the 2ml and needing to increase the dose.

So. As I’m nearly due a new bottle of LDN and have only usedhalf of what I have I thought now was the time to try increasing the dose to try and ascertain if 2ml really is the optimal dose.

So on Day 41, the 15th January I upped the dose to 2.5ml and then 9 days later (this last Monday) I went up to 3ml. 

On Tuesday my IBS wasn’t so good and I got a pre-migraine sort of head.  Wednesday, Thursday and today I have been dancing with a migrainey head, neck/shoulder pain and IBS flaring.  Thursday the IBS got really bad and I was totally wiped needing a PJ day. 

Today, Friday, the neck and shoulder pain is still really bad, the IBS is not so good, the migrainey head is ever present and my gland pain in my neck is back.  This is normally only present on really bad days, after big exertion or before I started taking amitriptyline for pain relief.

As there was no big exertion to have triggered this I am concluding it’s side effects from the 3ml of LDN.

My quandry now is whether to carry on and see if side effects subside after a few weeks – but risk feeling rotten or even more rotten for a few weeks.  Or to lower the dose back to 2ml and accept that’s the optimal dose. Or is it?

With the neck, glands and migraine all I want is to take some co-codomal for some relief but I can’t take that with the LDN.  So I have to find a way to cope (again) with the pain. And the IBS.  Without knowing if it’s worth it. Sigh.

LDN Key Dates

5 Dec 2009 – First LDN bottle arrives

6 Dec 2009 – Day 1: Begin 3ml LDN in morning

9 Dec 2009 – Day 4: Switch to night time dosing of 3ml LDN

17 Dec 2009 – Day 12:  Reduce to 2ml LDN nightly

15 Jan 2010 – Day 41: Dose up to 2.5ml

24 Jan 2010 – Day 50: Dose up to 3ml

LDN Day 30 – Ticking Along

It’s day 30 of me taking LDN.  The 2ml dose is agreeing with me well.

For the first 4 or 5 days at 2ml I felt postively perky.  Now not so much – but I don’t know if that’s because my reaction to LDN has changed or because of recovering from a busy Christmas.

I’m waiting for my new bottle of LDN to arrive.  Luckily I am not on the full dose or I would have run out by now.  Not sure if that’s a delay due to New Year post or if there’s a problem.

LDN Key Dates

5 Dec 2009 – First LDN bottle arrives

6 Dec 2009 – Day 1: Begin 3ml LDN in morning

9 Dec 2009 – Day 4: Switch to night time dosing of 3ml LDN

17 Dec 2009 – Day 12:  Reduce to 2ml LDN nightly

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.

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.