My Double Life

sleepyI live in two very real worlds, and it’s becoming increasingly harder to tell which is which.

I started taking Amantadine a few months ago in a final, desperate attempt to combat crippling fatigue.

You know the type; not the ‘ooh, d’you know, I quite fancy a ten-minute shut-eye’, but the ‘must. lie. down. now. or. else. the. cat. gets. it.’

After a few weeks of, ‘hmmm, is it working or is it me hoping it’s working?’, blam. I was quite suddenly…awake. Which was novel and lovely. I sailed right past the witching hour of 11am, sped past the goblin hour of 1pm and sauntered in a desultory fashion through the demonic hour of 4pm. I was owning this tiredness malarky.

Until, one weird morning. I woke, upset after having had an argument with a good friend the previous evening. Keen to build bridges, I called them;

‘Hey, s’me! Soooo sorry about yesterday! I honestly do like what you’ve done with the bathroom, really I do.’


‘You know, what we were talking about? When I laughed at your tiles? Didn’t mean to, honestly,  chocolate brown with green lotus-thingies is gorgeous. Let me make it up to you.Brunch?’

‘Huh? And what’s wrong with the tiles? You on something?’


Turns out, I didn’t speak to them the evening before at all. I dreamt the whole thing. Not just in Technicolour, but with Panavision, 3-D, total recall Dream-Vision. I could swear it happened. But it didn’t.

I forumed it. Ah. Two strange side effects of Amantadine – lack of appetite (not strange, added bonus, surely?) and vivid, disturbing dreams/nightmares.

Since then, I’ve been ummming and ahhhing. It’s incredible to be wide awake. However, I do now struggle to get up in the morning, not a problem I’ve ever had before. I feel drugged. Which I guess I am. I’m weighing up the pros and cons and am still not sure which way to go. I’ve heard from a lot of people who’ve been driven to abandon the medicine due to the nightmares/parallel universe reality.

I’m going to give it a few more months. Last night, I had a wonderful conversation with The Teenager. We put the world to rights and before he left the room (after a great big bear-hug), he put out the rubbish bags, promised to tidy the bathroom and fed the cat. Yeah, I know. As if?

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18 thoughts on “My Double Life

  1. Angela says:

    Wow, I’d almost forgotten about the crazy dreams, For a long time I kept having to ask people if things had actually happened or had I dreamt them! After more than a year on it I’d say the dreams definitely calm down, still vivid but not questioning reality anymore! As for the drugged up effect, that did last for quite a few months but completely gone now. Amantadine has really helped me, some of my walking problems that I thought were general deterioration are better…seems it was the fatigue that made the stairs like a mountain! really helps in the heat too, I tend to double up on hot days. Anyway, what I’m trying to say is persevere, it took ages to get used to but we’ll worth a few months of the crazies! Good luck x

    • stumbling in flats says:

      Hi there,
      that’s so great to hear! I may just persevere a bit longer now. Like you, I keep on having to ask people what’s real and what’s not. I have the most amazing conversations – just a shame most of them never actually happen, lol.

  2. lol 🙂

    I was on amitriptyline for a few weeks when I was first diagnosed, made me a zombie but also made me talk in my sleep. had long convos apparently :p

  3. Archie says:

    wow. it doesn’t ever give up eh? new ways to catch you by surprise. your last line once again made me chuckle and smile. funny funnies.

  4. Phill Evans says:

    Have you tried Modafinil? I have been taking one a day for years now with no side effects (I am susceptible to them…) and it really helps. Apparently it zaps the “fatigue” signals to your brain or something and seems to be in no way psychoactive.

    • stumbling in flats says:

      I haven’t – maybe I should mention it at my next MS appointment? I’m liking the sound of that, thank you!

  5. Hey there! Remember how I haven’t written a blog post or barely sent an email since April? Thank god it was a horrible nightmare. I’ve just been on Amantadine!!! Wait. What? No? I really have been so *($&(&# tired that I haven’t been keeping up with basic communication? Ugh.

    Your experience with this wakey-drug is very interesting! My neuro has talked about Modafinil, but I haven’t taken the plunge. Hate to keep adding drugs to my already drug-addled body. Will look forward to hearing how you do!

    Ms. C-Pxx

    • stumbling in flats says:

      hello stranger!
      Yup, it’s most odd. Like this morning (sunday), I struggled to get up at 8am!!!! Me, who normally loves getting up at 6.30 as I’m an early bird. Ugghhh.
      But, I’m loving the extra energy during the day, so I’m torn 🙁

  6. Stephanie says:

    Hi Stumbling and everybody! Going to ask my neuro about something for the fatigue – have an appointment at the end of the month. It has been so hot in North Carolina, so I’m hoping the cooler weather approaching helps. Had a troubling experience this morning though – completely forgot the word “October” while at the dentist – couldn’t remember what letter that month started with and just couldn’t get it out. I was an English major in college – I love writing and grammar so so much, so this is really going to get on my nerves! Any similar experiences?

    • stumbling in flats says:

      Definitely had the same experiences. I really struggle sometimes to recall a simple word. Meh. It’s frustrating as I used to think of myself as pretty eloquent. You’re not alone 🙂

      • Yep, happens to me all the time, too. Fortunately, I have yet to lose the ability to curse at will. Never seem to struggle for a well-deserved “SH*T!!” etc. 🙂

        annnnnnnnnd, reading that sentence, that sounds quite nasty. I was going to say, “never struggle for a well-deserved ‘F…!!'” but thought THAT was bad. Meh. I give up!

        • stumbling in flats says:

          Ahem, if I had written this post with absolute complete and utter Glaswegian honesty, to the point of pulling out my toenails on pain of death, you would have seen a HUGE amount of cursing.
          But I don’t want to alienate my lovely followers. So I will henceforth employ the curses of – ‘blast’, ‘Dambusters’, ‘gosh’, ‘golly’, ‘bother’ and ‘how ghastly.’
          Sounds rather better? (the jury’s out)

          • I give those curses about 8 seconds at your worksite!

          • stumbling in flats says:

            Sheez. You know me FAR too well. You’re right. But, if I talk really, really, really fast Glaswegian, they won’t know what I’m talking about. Result!
            They’ll probably pat me on the head and give me their tea/coffee order. Because, like, that’s what women on a building site do. No scary drawings and measurements for us,lol!

  7. Justin says:

    Just out of curiosity, have you tried cutting out gluten? There’s supposedly a connection in some cases with MS. I won’t bore you with the details of my story, but suffice to say that for the last year I’ve had all sorts of problems with balance, a terrible fatigue, and numbness, among other strange things, and after stopping gluten it’s amazingly improved, especially the fatigue. I don’t have proven MS (although it might be), but it might instead be gluten ataxia, described by your very own English Dr Marios Hadjivassiliou in Sheffield. Anyway, I’m guessing if you were to try it, you’d have to give up those chocolate thing-a-majigs that you adore, so maybe it isn’t an option! 🙂

    • stumbling in flats says:

      You’re right – so many people have told me about giving up gluten. I do
      love chocolate but if it’s making me ill then I need to sort it.

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