Archive for November, 2009

Amitriptyline Dosage Increase Settling Down

Within a week of writing about the weird paradoxical side effects I was getting from increasing my amitriptyline dose, things settled down considerably.

I’m still taking the increased dose of 30mg nightly (I take it around 8pm).  In particular the return of a lot of my pain when increasing the dose was incredibly difficult to cope with.  But sure enough that stopped.

I increased my dosage from 20mg to 30mg on 24th October.  The side effects, most notably lots of pain, became much worse in the second week and peaked by the end of that week, the 7th November.  By the end of week 3 it had settled down considerably.

Now, nearly 5 weeks after changing the dosage things are much better.  I’m not sure the pain killing effect has increased dramatically (time will tell when I can look back at how often I’m getting migraines and so on).  It’s difficult to know if it’s working or if I am not in pain anyway.

I do feel a bit more groggy first thing on waking than I did before the dosage increase.  But that’s a lot easier than it was too.  Maybe I need to take it a little earlier, or maybe it will settle in a week or so too.

What the 2 weeks of side effects reminded though was how bad things used to be before I started taking low dose amitriptyline for pain relief.  It really does make a big difference.  It doesn’t keep me totally pain free but life is a lot more comfortable and manageable with it.

Looks like persisting worked this time.  Those weird side effects went after a few weeks – just like when I first started on 20mg.

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Bit by bit

My Clutter Buster Angel came for another sort out session this afternoon. 

We tackled the art supplies and materials.  It wasn’t quite a frightening as I thought.  There’s still a lot of stuff but now I’m more assured it’s stuff I need, stuff I want and stuff I use.

Thanks to those who told me how good it can feel to get rid of the stuff that weighs you down without you realising it.  It’s working.

I am so looking forward to seeing the extra space once we’ve finished the first fix (maybe even revisited some “keep me” piles a second time) and my volunteers with pressganged Growler take the piles of unwanted stuff to sell at car boot.  At this moment I’m wondering if there won’t be too much stuff for just one car boot pitch!  We have almost enough unwanted books to have our own market stall.

Still lots to do but I reckon we’re nearly half way through the clutter. Nearly.

In other news I contacted the online medical/doctor service in the UK about whether they will prescribe LDN for my condition. 

They told me that what they need is a letter from my regular physician (consultant or GP) on headed paper which a) confirms my diagnosis and b) “suggests they are happy for you to try LDN”.

I would suggest that therefore this avenue is not an option to get LDN for anyone whose GP or consultant isn’t fully supportive of their condition.  I spoke to my Lovely GP on the phone and she said she would certainly write me the letter they wanted as she didn’t want to be an obstruction to trying something that could be helpful when she knew I had done my research, understood what I was asking for and when it was not a dangerous drug to try.

How lovely my Lovely GP is.  So I’m waiting for the letter to be ready so I can send that off to the online medical people, then pay to register and then see if they will consider prescribing LDN for me if they deem it “appropriate”.  I’m not namechecking or linking to them until I’ve established whether all this fuss is going to get me access to try LDN or not.  But I’m a step closer to finding out. 

This weekend Growler and I are off to visit his family in South Wales.  He’s having Friday off so we can even do something on the way if I’m up to it.  Very exciting.  Fingers crossed.  Anyway I’ll get to see the folks so it’s all good.

I’ve been managing to eat some different things without terrible effects in the last couple of weeks – things outside the IBS crisis diet I’ve been on for months.  Maybe Growler won’t need to take as much special food for me this weekend!

I seem to be going into chatty mode rather than blogging mode so I shall draw this to a close. The exertion of the clutter busting and decision making, combined with brain exertions of trying to make a pop up drawing earlier (which I kept getting the mechanics of wrong) has left me rather exhausted and my brain a bit unreliable.

How Ill is Too Ill

Feeling shattered. Most week days mornings since I changed my amitriptyline dose to 30mg I’ve felt utterly shattered in the mornings.

My optimum sleep seems to be currently 11 hours. Growler has to get ready to go to work and try as he might I stir as he gets ready. Typically 9 hours sleep.  Which should be enough but just isn’t. I’m also aware that if I roll over and attempt to go back to sleep the breakfast he so carefully prepares for me will be past it’s best by the time I’m ready for it.

The time I should be still asleep I’m awake and feeling shattered and then it’s seeping into my mood and attitude for the day ahead.  Because I really don’t feel like it’s a day when I will be able to get anything done and everything seems sort of pointless.

I am reminded of all those awful mornings when I would wake and need to get up to go to the office.  Reminded of thinking, and often saying, “how ill is too ill to go to work?”.  Because I’d gotten to the point when I never felt well or energised or refreshed despite a good sleep.  For a long time I thought it was stress and unhappiness with my job.  A large part of it probably was.  But sneaking in alongside that was the fog and fug of ME/CFS.

There was a time when I knew that this fug meant stop in bed, don’t go to work.  Rest, relax and look after yourself.

Now the fug is there, to a larger or lesser degree, every day.

Any other month and I’d be embracing do nothing except tend to yourself, soothe yourself.  But I’ve got this pressure to finish a painting which I haven’t managed to agree a drawing of yet.  My first attempt fell way short as far as the client was concerned.  I find myself gripped with fear and not quite knowing how I’m going to capture what the client wants.  If I can relax then maybe it will just come.  But the fatigue presses heavy on my body and my soul.

So, I must gather myself and focus.  And all I can see is “how ill is too ill to not worry about this thing today”.  Which doesn’t help when I’ve had 4 days pass of not worrying about it and find the deadline getting closer with the limited doing time getting less and less.

I’m not feeling particularly gracious about a limited life with ME/CFS today.

 

PS: Oh thank goodness – it could be my hormones making so grumpy and moody. Time to dose up on Evening Primrose and see if a miracle can occur.

Clutter Busting of Self Image?

My Clutter Buster angel came round for another session this afternoon.  I was not looking forward to it as we were tackling the front room which is piled high with mostly My Stuff.  Art stuff, book stuff, wedding stuff, camera stuff, might be useful stuff and more.

I almost didn’t want to do it.  Was it shame?  Shame of all the stuff I’ve accumulated? Shame of saying “actually that piece of cardboard is really important”.  I don’t think that was the major factor.

It was in fact much more familiar.

Do I keep this book on growing your own vegetables or do I get rid of it?  Because I’ve never used it.  But I might one day.  Except I have ME now and I can’t even do a spot of light weeding let alonemake my own kitchen garden or dig potatoes.

Do I keep this badminton racket?  This badminton racket I used to use.  But now I can’t because I have ME/CFS.  But I might get better and want to use it. 

It’s the same over and over.  This *thing* represents who I was, possibly who I’d like to be again, but not who I am.  Do I get rid of it because I’m not that person now or do I keep it because I might be that person one day?

Well what K, my Clutter Buster Angel, said makes it all a bit better.  That if (when) you do get better it would be lovely to be able to go out and buy the badminton racket knowing you’re going to use it.  This makes it easy to let go of the stuff.

Letting go of the emotional attachments is a little trickier but will come with time.  Accepting I am not that person anymore is something I thought I had pretty much dealt with. But there’s still things to work on.  Still things to accept and let go of.  And maybe the physical process of clutter busting is actually helping the emotional aspects of letting go too.

It’s not a surprisingly relevation.  It just caught me off guard. 

Self image and identity are things I wrestle with still.  In my head I see myself as the thin girl I once was but trapped in a overweight  flabby body. There’s also a healthy girl in here waiting to bust out.  If only I could get ME/CFS to bend to my will.

Clutter Buster

I had a visit this morning from my brother’s girlfriend.  She moved in with him a few months ago so she’s now local.  She’s been helping me with decluttering and sorting stuff out in preparation for moving house (not found a house to move to yet though).

She came to do a bit more today, to help with the physical stuff, cleaning as she goes and also figure out what to keep, what to throw and what to sell.

We’ve had to cancel a couple of sessions because I haven’t been well enough.  And I can only cope with around an hour of sorting at a time.  Just the directing, assessing and deciding proves quite exhausting.

What is marvellous is just how much she can achieve in an hour being all healthy and fit and strong.  Plus she loves to organise and to clean!  I’m starting to think she is an angel.

Whilst I was flicking through a box of folders, assessing what to keep and what it was now time to ditch so she decided she would just hoover the stairs. 

I poured over more folders and papers and old artwork, then realised the hoover sounds where coming from the lounge.  I turned my attention to a drawer full of floppy discs, electronics and PC cables. Eventually she popped her head up the stairs and said (sheepishly) “I got a bit carried away … I sort of hoovered the lounge … and had a bit of flick round downstairs …”  And she beamed at me.

How such a simple thing can make a heart sing!

So a bit more sorting, a bin bag of recycling, a bin bag of rubbish and me with wobbly legs it was time for me to finish for the time being.  “You go sit down until your brother comes and I’ll just have a little hoover upstairs …”

My brother arrives to see her hoovering like a demon at the top of the stairs and grinning from ear to ear.  The woman is a cleaning machine!

I’ve been helping my brother to get to grips with some web design software so he can maintain his own web site instead of waiting for me to do updates for him.  It’s great for him to be able to do this himself but just a few technical details left to explain.  Except while I’m engrossed in explaining technical things and going over his web site design the cleaning demon has disappeared.  My brain, becoming mushier and foggier by the minute realises there’s an odd sound coming from the kitchen … the sound of … well, serious cleaning.

She returns some time later to the lounge beaming a wide smile.  Thank you for whatever you just did in the kitchen.

I’ve had repeated stresses about cleaning and clutter and cleaning and CLEANING which I’ve blogged about a few times since I got ill.  Someone in the comments once suggested I think about everyone I knew and see if any of them would like a bit of extra cash in return for doing a bit of cleaning for me.  I didn’t know anyone who fitted the bill.

Now it seems I do. Hurrah!

Before she started the extended hoovering and sneaked into the kitchen to wipe down surfaces I’d raised the idea of whether, if I get my DLA renewed, she’d like to do a bit each week for which I would pay her.  And yes she would.  Brilliant!  So I think me saying I needed the help was the cue to just get stuck in.

She was a bit worried that Growler might be offended.  He wasn’t.  But he did feel guilty.  Guilty it needed doing.  But as I said, accept it in the spirit it was given.  Plus she does indeed love cleaning, it is no lie, because she was smiling more when she left than when she arrived! 

There’s more to do but just that couple of hours made me so happy.

So another pile of my clutter has been sorted, my carpets are hoovered (so Growler has one less job this weekend), my kitchen is cleaner and if I get my DLA I have someone lovely who’ll come and do a bit of cleaning regularly. An uplifting sort of a day.

No from NHS GP for LDN for ME/CFS

What a lot of letters. But it is (as expected) a no from my NHS GP for prescribing LDN for ME/CFS.

She was apologetic, bless her.  But her hands are tied.

One good thing came from it though (which I need to back up with some bits of paper) and that was to let her know that the official person in their practice was mistaken in saying that you can’t get low dose Naltrexone in the UK without importing it and spending a lot of money.  Because I’m assured you can get low dose LDN for a decent price if you know where to ask.

If you try to get it from a local chemist in the UK it may end up costing a fortune (like £350?! No joke!).

But there is a pharmacy in Glasgow who will provide it mail order for £15 a month for liquid or £27 for tablets (at time of writing).

I found the info for them out on this forum post and here is the actual pharmacy site http://www.delivermyprescription.co.uk/about.htm

You do of course need a prescription from a doctor for it first!

But I can let my GP and her official people know about this because if anyone goes to my practice with MS and asks for LDN they stand a much better chance of getting access to it.

Meanwhile I will now have to decide whether to pursue a private prescription for LDN.  Which might involve having to travel for a consultation and certainly having to pay.  But not crazy money and all quite possible.

My best option seems to be to go through this e-med service detailed on the LDN Research Trust’s forum

The money and possible travel for consultation is one thing for me to get past but I think it’s also the idea of being scrutinised for a diagnosis that makes me wary.

But what is fab is not only do I have my Lovely GP’s blessing to go and get a private prescription but she’s very keen to find out from me if it does indeed help.

I’ll leave any decision making to another day.  But I expect I’ll be back on the internet within the hour assessing my options 😉

Huh? I’m a Pain Meds Weirdo

I’ve been taking 20mg of amitriptyline nightly for pain relief since June 2007.

In fact my post about it is one of the most visited on my blog so if you’ve landed here looking for info on amitriptyline as pain relief that post is the place to read more.

Since I’ve been noticing pain creeping back in more regularly in recent months I asked my Lovely GP at my last appointment about upping the dose to 30mg. 

Originally her intention had been for me to take 30mg.  But when I upped the dose from 20mg to 30mg back then a weird thing happened. 

The 20mg dose had been fairly effective (and continues to be).  It stopped pain to a certain threshold but when I go beyond that, or am particularly poorly, it’s like a switch is flicked off and the meds stop working.

When I went to 30mg it was as if I wasn’t taking any pain control meds at all.  The switch was permanently flicked off.  I stuck with it the dose a while but couldn’t stand the side effects.  So I went back to the comfortable 20mg that gave me sufficient pain relief for average days and topped up with over the counter and migraine meds when needed.

So after more than 2 years I’d thought I maybe didn’t stick with 30mg long enough to get past side effects and feel the benefit.  Because even my Lovely GP said “that’s odd”.

I’ve now been on 30mg for 2 weeks and the pain is worse than it was on 20mg.  Not crippling pain, but nagging, aching, persistent pain.  Enough to make me want to reach for the co-codamol (if my IBS-C wasn’t such a problem)especially first thing and later in the day .

It would seem it’s the same result as before.  I am weird.

Is it medically possible I wonder?  I suppose that using this sort of medication in low doses for other things like pain control isn’t fully understood, so maybe this isn’t understood either.  Certainly not by me.

It would be nice though to have a top up on meds mean a top up on pain relief like is supposed to logically happen!

I’ll stick with the 30mg longer this time, to be sure.  And I’ll think about discussing trying upping to 40mg with the doc to see if that makes a difference.  I feel a little cautious about taking more as I know it can make you feel pretty spacey.  We’ll see how the 30mg goes in another week or so.


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