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.
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.