Double Vision, ACTHAR, Nuvigile, Sleep Issues

 

 

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Well, what a week… Or few days I should say. I started the Nuvigile and Restoril and wow. That Nuvigile works, it works too well actually. I took it at 7am and come midnight I was still wide awake. I took my Restoril/Melatonin and… Nothing. I stayed up all night.

Next day, 7am, I took it again, maybe that episode of insomnia was a fluke? This time I changed all my sleeping habbits. I dimmed the lights 1 hour before bed, listened to an audio book, took Melatonin (5mg) 30 mins before bed, Shut off all but one small lamp, took a shower, kept TV off, light classical music instead. 30 minutes later I took my Restoril. Again, no sleep. 2 Days now.

Next day no Nuvigile and I got some Percocet. Took 3 to take a nap. woke up 2 hours later.  I was exhausted all day long. I finally could not take it, could not keep my eyes open, I felt like throwing up, it was horrible. So I took 1 Percocet and my Restoril. Classical music? Nope, brain wouldn’t shut up. Political talk radio? Nope, got to into it. History Chanel with towel over TV to keep room dark? That helped. Finally I got some sleep! Not great sleep but sleep!

Today I feel dizzy from the double vision which has been way better, I took the tape off my glasses the other day and have been OK close up. Far away was doubled but now? Its minor, but still enough to make me dizzy and sick. I will post some examples below.

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So, life is still not where I want it to be but seeing change makes me happy nonetheless. I finished 1 vile of Acthar, I don’t know what happened but there is no way I am getting 10 shots, maybe 9. Either way I hope it helps!It all just takes time, either way, even if it’s all mental, I do feel better emotionally. Must be the hope, motivation, you know, all that good stuff haha!

7 Responses to Double Vision, ACTHAR, Nuvigile, Sleep Issues

  1. Anonymous says:

    Matt, I have double vision too, it came 10yrs. prior to my MS dx. I wear glasses with "prism" to correct it. I see perfectly with them, without them, I see two of everything. Maybe you could benefit from prism lenses
    as well.

  2. Matt Allen G says:

    I am thinking about it, wanted to see if it clears up because I don't have vision insurance so yeah…. Man, I want it gone though! We will see where I am at when I get paid… Put tape back on, booo!

  3. Minakitty says:

    A sixth nerve palsy in my left eye was the initial symptom that led to exams, which led to my first MRI, then diagnosis (on my birthday too!). It lasted for a month, but I still managed to work every day (just kept that eye closed while on the computer). I have non-MS related eye problems so I thought it was related to those (at least those can be fixed 🙁 ).

    Glad you're seeing better. 🙂

  4. Matt Allen G says:

    Yeah mine is in the right eye, sux but I am managing now. Just not enjoyable haha. Does you still persist or just that month?

  5. Anonymous says:

    Matt, just stumbled on your blog. I was wondering if you have researched HSCT? Judging by the agression of your ms I'd say that you are a prime candidate.

    I'm sure you already know all about HSCT, but if you don't it's currently in phase III trials in the US, and is shown to completely stop progression of ms in nearly all RRMS cases, and 70% of PPMS cases. With that in mind, most people go on to have significant reductions in their EDSS score two years out, once the body has had a chance to re-build myelin.

    A guy called George Goss is the man who is most visible regarding HSCT, he had it done two and a half years ago, now is totally ms free. Here is the link to his blog:

    http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

  6. Minakitty says:

    Just for that one month. I get something new and exciting with every relapse. I closed the affected eye in order to function. I do wonder if it will return since the symptom of my second relapse ("MS hug") is still going strong. :/

  7. Matt Allen G says:

    Hmmm, interesting, actually never looked into it. Trying to be patient and realize healing will take much time, so trying to be patient….

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