What’s Happening?

This is day 21 of my taking a low dose of Amatryptaline in the hope it helps with my chronic headaches, migraines, neck/shoulder pain and general aches and pains caused by my ME/CFS.

I started on 10mg a day, taken at night so I can sleep through the worst of the sedative effect but benefit during the next day from the altering of chemical messangers involved with my pain.  After 10 days I upped the dose to 20mg (under my doctors direction).

I had very heavy sleep for the first two weeks and the first 5 days or so on the new dose left me feeling very woozy and light headed all day.  10mg seemed to wear off about 3/4pm and the pain flooded back.  One 2omg I feel the pain come back around 8/9pm so only a couple of hours of discomfort until the next dose.  That is unless I try and do something, anything as any exertion brings pain pumping back.  I’m hoping to try 30mg after I talk to my doctor later today.

Amatryptaline doesn’t work well for everyone with ME/CFS – many people experience so many unpleasant side effects they have to stop taking it.  Weight gain is also common and a great concern as I can’t afford to gain anymore weight.  My energy levels and back pain is already under enough pressure, and it’s difficult to lose weight when you are so inactive because of ME/CFS.

But so far so good and it seems to be proving an effective pain treatment.  My consumption of over the counter pain killers has dropped signficantly already.

What has been really strange is that with the removal of my day to day pain I am finding it difficult to assess how well I am on a given day.  I am missing some of my key signals of wellness to indicate how much or how little I am capable of on any given day.  The fatigue is still there but is so difficult to measure (the increments are so small but so significant!) and the pain was a guide dipstick.  I am not complaining – just finding it strange to adjust, feeling a little like getting used to the illness last year.

Alongside this Amatryptaline experiment I’ve just started an Allicin experiment.  I’m now thinking I should get stable with my pain relief before I continue with Allicin.  Allicin is a substance made by from consumption of garlic and it’s the active good-for-you part of garlic.  A company with the brand name Allimax have developed a way to make this Allicin in tablet form which you can take as a suppliment.  It is believed to be a very powerful infection fighting agent – research suggests it’s effective against MRSA and other infections, preventing colds, lowering cholestorol and trials are beginning with Lymes Disease.

The theory for ME/CFS is that the condition is caused by a chronic infection, not detectable on standard blood tests.  Taking Allimax every day will start to fight this deep chronic infection.  As the infection dies back symptoms will worsen temporarily.  Once you feel stabilised you increase the daily dose of Allimax.  (The manufacturers suggest 10 tablets a day for MRSA so it’s not unreasonable to think you may need to build to this level).

I’m not sure how much I believe this model and this treatment.  But if it is effective it does not need me to believe it!  So I thought I would give it a go.

Trouble is – two days after I started taking the Allimax I have a lot more pain especially in my glands.  Now I don’t know if that is the Allicin doing it’s job, or the Amatryptaline not doing it’s job! 

I don’t know what’s going on!

I should also mention that the Amatryptaline really dulled my senses and feelings in the 5 days or so after I started on 20mg.  At least I noticed it the most at this time.  Now on day 21 I am still struggling to connect with my creativity, feeling like it has been dulled and I am blocked somehow.  It could be a conincidence.  I really do hope it’s not a long term side effect of the medication.  I know with ME/CFS balance is such an important part of survival – but I’m not sure I can face losing creativity even if it is to gain pain relief.

(Allicin can effect blood thinning medication and diabetes type II medications.   Just because it’s natural doesn’t mean it’s safe – make sure you are well informed and if in any doubt speak to your doctor).


4 Responses to “What’s Happening?”

  1. 1 fittam July 9, 2007 at 11:15 am

    I’ve been on Amitriptyline for over a year now but could never seem to use more than 30 mg a night without feeling groggy the entire next day although my doctor thought I should be on 50 mg because that kept the pain at bay around the clock.

    With two hyperactive special needs boys – I can’t be groggy for even a minute or I might wake to the house GONE.

    I have not researched the garlic treatment – it holds as a solid antioxidant.

    At various really rough points (pain wise) I always revert back to Guafenisen – Tussin.

    I’m always in pain but what happens is your brain learns how to block your interpretation of the pain – this is why on the amitriptyline you can’t use the pain you are feeling as a way to guage if you are doing too much or something that will aggravate it.

    You just feel it when you cross that threshold beyond what the medication can cover then you experience the pain more fully.

    Maybe creating a baseline of what you could do before the medication was started and at what point was too much.

    Go Gentle on Yourself.


  2. 2 rachelcreative July 9, 2007 at 11:59 am

    Thank you Tam 🙂

    It’s a totally new sensation on the amitriptyline and your explanation makes total sense to me.

    I suppose blocking all pain signals is one thing but you have to weigh it up with the life you lead! I always thought pain was important – it’s my bodies way of telling me something (don’t do that, rest, etc). But it’s relentless with my CFS/ME and some experts reckon they are false signals anyway.

    Thanks for your encouragement.


  3. 3 todayyesterdayandtomorrow July 11, 2007 at 2:40 am

    Hi Rachel,
    I understand your pain. I know it well. The only one thing, and there is only one, good thing, selfishly good, is when you find that you’re not alone and when you find others that ‘understand’.

    There are a few things that made a significant, positive difference in my pain and fatigue. I tried ‘it all’. For me, diet played a much larger role than I would have ever imagined. The hardest part was getting up off my butt and making that change. I was too tired to do it. At first…stopping milk, then red meat…etc. I’m sure you’ve heard those two already. That didn’t help much, though. What helped is when I went completely organic, stopped eating the foods on the regular grocery shelves completely, and no processed foods. I learned about Genetically Modified foods. It made such a huge difference not only in my pain and fatigue, but also with Crohns. I’m blogging about genetically modified foods, and organics now. I’m not talking about my prior health issues though, not making it personal – but when I came about your blog this evening and read through your pain; well, I know your life and I just wanted you to try organic foods, if you haven’t already – 100%. Try if for 2 weeks- see if it makes a difference. Give it two weeks. At least 2 weeks. If you start to notice a difference – keep going. Then one day, maybe you won’t need medicine anymore. I don’t have anymore fatigue, none at all. I pray you get that back again… if you do try it, keep in touch?

    **Hugs your way**

  4. 4 gfm July 21, 2007 at 3:10 am

    Hi, I have been taking allimax for chronic fatigue syndrome for almost 5 months. I started a thread on a forum I belong to, there are a few other people on it trying this as well and we are all sharing our experiences. You can find it here: http://www.foggyfriends.org/forum/showthread.php?t=13428 (or go to http://www.foggyfriends.net and click on the forum index and then symptoms and medical matters). Good luck!

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