Monday, May 17, 2010

Good news!

First of all, the good (medical) news:
My specialist agreed to prescribe LDN for me. (That's Low Dose Naltrexone, if you didn't know. ^.^) She said to take a quarter of a tablet, but didn't specify when or how to take it, or whether I can or should increase the doseage if needed. Each tablet is 50mg, so a quarter (it's hard to make it exact, even with a pill cutter) is about 12.5mg. So that's what I'm taking each night.
I'm going to see my GP, ask what the highest dose is, how I should go off it (if I need to) and how long it needs before it starts working. My specialist had never prescribed LDN before, probably because her patients trust her and don't do their own research!!
I've been on it since the 12/05/10, and it does seem to make headaches less severe and Panadol work better for them, but that could just be a placebo effect, or my mind making it think it's doing that. Because I studied for 5.5hrs today, I had a lot of back pain. It wasn't as bad as last week; I was incapacitated then, and totally bedbound, unable to move for about 4hrs. This week, it was still awful pain, but I could manage to do a few things before lying down with a heatpack for 1.5hrs and then having a hot shower.
Heat seems to really help my pain. It didn't help my rheumatism. I had a bad attack of it the other night, so I was lying down, mum was bringing heatpacks and I had my electric blanket on full. But mum's arthritis was playing up, too (our pain always seems to coincide) so we both want a definitive test to rule out all types of arthritis. But no side effects so far from LDN, because I was getting headaches before it, I think that it's just normal ME headaches.
I can only take Panadol or Nurofen while on LDN, anything with codeine will cause a reaction similar to an opiod overdose. My specialist doesn't know what it'd look like, so mum took all meds with codeine out of my room. My memory is so bad; I thought Mersyndol didn't have codeine!!

The good (academic) news:
I got my SAC in the mail last week, and I got a "Very High", which means my mark is in the 80% - 100% range. I think I got an A+, but after I saw that I got higher than a B, I was so happy I couldn't be bothered calculating my result as a percentage. So that's brilliant, because it counts for my work from Weeks 4-7! I'm really happy, but worried about my next SAC. It sounds rather complex.

Fail!!! (Or "brain fog" in the ME world)
I thought my SAC was this week, and that's why the Distance Education people had posted the SAC to my mum (my supervisor) last week. I got my weeks confused. This week is Week 13, which is more calculus/differentiation, but Weeks 14 and 15 are the SAC. It's a project on calculus/differentiation, and it's supposed to take no more than 7hrs in total. Or something like that. The week after that (Week 16) I have another SAC, which is a test-format SAC on, I guess, calculus/differentiation. Then I think it's holidays. So I'll be really busy for the next few weeks!! Although, I've already completed this week's required homework, and my teacher is visiting on Tuesday, so I can show her what I'm having trouble with, and we can work out what amendments to the requirements would be best for me.

Birthday presents:
I was finally able to go out a week or so ago and buy a new pair of tracksuit pants (one I bought in January stretched strangely, so now they're too long to wear. The fabric was waaaay too stretchy!! (On the old pair!) I still need to get this new pair taken up at the tailor's. I also bought new winter pyjamas, and a hoodie that matches them. Plus slippers. I figured I may as well get really comfortable pyjamas, seeing as I spend so much time in them! I got one blue pair (paisely blue/aqua with a royal blue top) and a purple pair (white/purple striped pants with a purple top.)  I still want to buy a dressing gown, though. One of those warm ones. I haven't found one yet, but I'll keep looking! I used my gift card and some of the money I got for my birthday. There was a huge special on at that particular store, which was great! I may even get a second hoodie from there; quite cheap, very comfortable and warm.

My sleep is all over the place. Most nights I'm up until 6am, or until I get a headache, nausea and dizziness, (from lack of sleep) so that I have to lie down with my eyes closed, and not move. Last night, though, I went to bed at 11.25pm, woke at 3.30am, and a few times in between. I've been up since. It's about 5.10am now, so I'm going to try and sleep. I can never catch up on sleep, because in the mornings (7.30am - 9am) there's "getting ready for school noise" and in the afternoons/evenings there's "arriving home/playing PS2, etc/getting dinner ready noise" So I really need to get my sleep sorted. I have no idea how to, though. Any ideas? (Apart from anything sleep hygeine related; that's what got my sleep into this freaky pattern in the first place!)

Thanks so much for reading. Any comments, feedback, or tips would be greatly appreciated! Take care.


  1. You are taking 12.5 mg?! That's way too high! You should be taking 5 mg at most. I'm surprised you're not getting any side effects, because at that dose you should be. If you reduce to a proper dose it will likely help your sleep.

  2. Maybe the units are different where you are?

    The 50mg tablets are the smallest they come, and they're the usual dose given to MS, FM, ME patients, etc.

    My specialist checked 3 times on MIMS - I mentioned 5mg, she said:
    a) how could you divide it into something that small
    b) such a dose doesn't exist
    c) the lowest dose she's ever heard of is what I'm taking
    d) I'd get no effect if I took a smaller dose, and I tend to need larger doses as I am resistant to most meds

    How long does it take to work? What should be the first signs that it's working? Does it help painkillers? (ie. make them more effective) I can't reduce it anyways, it's what my specialist prescribed and I can't cut it any smaller!! lol. But any tips/info about how I'll know it's working and what it helps would be brilliant. Thanks!! =D

  3. I alway like hearing good news Alex! <3

  4. Thanks, Ziggy! <3

    I try to stay positive, (when I can) but it's exhausting, so I thought of everything I could, and put it into one post.

    I've got Tumblr now... What do I do with it?! lol!!! =p

  5. Congratulations on your SAC! Woo Hoo!

    As far as the sleeping thing, I can offer a few things my natural/chiropractor doctor told me to do.

    1. Watch something funny before bed. Otherwise, no tv.

    2. Black out the room as much as you can stand it.

    3. Go to bed, regardless to how tired you are or are not, at the same time every night.

    4. Take a bath or camomile tea to relax you before bed.

    5. Use a sound machine (you can buy them in the US for $45) which works on white noise and it blocks out sound by refocusing your brain on the white noise which then lulls you to sleep.

    6. No caffeine after 3pm.

    7. If you don't fall asleep in an hour or two, get up for an hour and then go back to bed and try it again.

    Believe it or not, it worked for me.

    As for the studying and getting pain. A suggestion he gave me - but is hard to do - and worked is to set a timer so you take a break for 15 minutes every 2 hours.

    I hope some of those things help.

    Again, congratulations. You should be so proud of yourself!

  6. It's just 'Naltrexone' at those kinds of doses. It's only called 'low dose' naltrexone when it's about 5mg and below. Most people with ME start at about 3mg and work themselves up to 4.5mg. Your specialist won't know because in the past naltrexone has only been used for people with addictions (at 50mg etc). For MS/ME etc it is used in a different way. I was on it for 120days - 4.5mg each night - and I didn't have any improvements. But I know it has helped quite a lot of others, so I hope it helps you.

    (If you can't cut the tablet small enough, you can crush up the quarter of the tablet with a mortar and pestle, then mix it with water - a calculated amount of millilitres- so you know how many mg are in each ml and therefore can measure a 4.5mg dose. Keep the mixture refrigerated and stir it each time before you take it)

  7. P. S. I just added your link to my blog, okay?!

  8. @Dominque
    Thanks; I've tried all of those. Once, I started reading at 8pm, and nearly finished all of LOTR by the time I was sleepy... At 5am! It's basically sleep hygeine, which doesn't really work for me. No one believes me, but it doesn't! Thanks, though.

    And I would take breaks from study, but I'm afraid (from experience) that if I stop, the pain and exhaustion will all hit at once and I'll have to go to bed. That's why I study for at least 5 hours. That way I get all my work done!

  9. @StroopwaffleL Thanks so much for commenting! I managed to cut it again so it's 6mg. (Or as close as I can get it!) I'm seeing my GP soon, and I'll ask for a script for 3mg.

    Apparently the reason I've been feeling so exhausted and ... dead-ish is because lethargy and fatigue would be major side effects at a dose of 12.5mg.

    Now that I'm on 6mg, my pharmacist said that I should only be experiencing (milder) nausea, dizziness and light-headedness. The nausea has been the most promintent side effect... (Apart from the lethargy, which is beginning to wear off, I think)

    Thanks again, @Stroopwaffle, and take care. =)