Eureka!! An ME/CFS Light Bulb moment!

10 Jul
Eureka! Light bulb moment. Photo credit: Tat via Morgue File.

Eureka! Light bulb moment. Photo credit: Tat via Morgue File.

A few days ago I had a bit of a Eureka light bulb moment. Sadly it wasn’t discovering the magic cure for ME/CFS. But it’s still worth posting about…

For months now I’ve been battling with my bloated belly, trying desperately to figure out what is causing the food baby bloated belly to reappear without fail day after day.

Having added high soluble fibre foods and supplements to my diet, I have seen some improvement. My poor belly is not anywhere near as bloated as frequently after meals as it has been.  Yay! I’ll take that as success, even if it’s only partial. Some improvement is better than none.

But that’s not the end of the bloating story. If only it were… Each night when I’m getting ready for bed, my belly is swollen and bloated to the extent that the skin feels like it is being stretched and pulled so tight that it may tear at any moment. It’s incredibly uncomfortable. I look like I’m a few months pregnant each and every night.

I began to notice that this bloating seemed to appear late on in the evening and regardless of what I’d eaten. Was I reacting to each and every kind of food I wondered? But no, usually after dinner, with the help of the soluble fibre eating plan, my tummy was fairly flat and not bloated.

So then I wondered am I reacting to my toothpaste? But as my Mum pointed out to me, I don’t actually swallow it, so how could that be causing the problem? A valid point.  I also don’t have the same issue when I clean my teeth in the morning.

Is it that I’m getting too much air into my system whilst cleaning my teeth? (Yes I know that makes no sense, it’s thoughts like these that makes Mr B laugh and wonder how I ever got accepted to Cambridge University!)

Somehow I had overlooked the obvious cause of this evening bloat. This bloating that only comes on after 8.30pm….the time at which I take my last meds of the day….

And then…EUREKA!!

It’s some of my meds that are making me bloat!

At 8.30pm I take 30mg of Amitriptyline and 2mg of Melatonin.  I take these each and every night.  Having (finally) made this connection, I had a read of the accompanying leaflets for both of these medications. First of all, if you’re a worrier don’t bother reading these leaflets as they basically say the medication can cause every possible side effect known to man…All jokes aside, seriously you should read the leaflets to check you’re not allergic or in a high risk category. Perhaps if I’d done that it wouldn’t have taken me quite so long to figure out the medication-bloating pattern…oh well better late than never!

So what did I learn from these leaflets? Well both Amitrip and Melatonin contain lactose…a food stuff I know I’m intolerant to. So putting 2 +2 together and making 5, I’m guessing that I’m reacting to the lactose in each of these tablets. Even if that doesn’t quite add up, and perhaps lactose isn’t the specific problem, I’m pretty confident that it is these two medications that is causing my tummy to blow up to epic bloated proportions each night before I go to bed.

Having made this discovery is great, at least I now know the cause, but on the other hand I’m not sure there’s much  I can actually do about it.

It would be the Amitrip and Melatonin that are giving me these side effects, the two drugs that I actually feel are helping me! On the odd occasion when brain fog has gotten the better of me and in my befuddled state I have forgotten to take my Amitrip, the next day the myalgia pain is significantly worse. At these times I’m like, why am I in so much pain? I didn’t do anything yesterday, how can I have this much pain from nothing? And then I look at my strip of Amitrip pills and I realize…duh I didn’t take these last night.

The same is true with the melatonin. If I find myself wide awake an hour or more after going to bed, staring at the ceiling, fruitlessly counting sheep, tossing and turning, unable to fall asleep, I look at my melatonin pack and realize that I forget to take the magic sleep inducing pill.

So yes, it would have to be these two meds causing me the bloating problem and not say the Levothyroxine which I take each morning, and which I’m pretty sure is doing zippo for me.

I’m awaiting words of wisdom from my specialist, the prescribing doctor of these meds. But I’m wary about switching to alternative meds when both these seem to work so well for me. And I definitely don’t want to stop taking them as they are two very important parts of this jigsaw of recovery from ME/CFS. They actually do make a difference so definitely don’t want to lose them! So it looks like I’m stuck between a rock (the meds) and a hard place (the bloating) and that I’m just going to have to put up with the bloating for now.

And to be honest, a bloated very pregnant looking belly is a small price to pay for reduced pain and beauty sleep. So I guess I should quit grumbling about the bad side and be grateful for the good side 🙂

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9 Responses to “Eureka!! An ME/CFS Light Bulb moment!”

  1. thehomeschoolingdoctor July 10, 2013 at 12:49 pm #

    Just an idea…maybe if you could find a good pharmacist for the case…they could see if there are any formulations without lactose for you. Maybe a liquid or another manufacturer. Melatonin is made by lots of different companies. Amitriptyline too. Sometimes compounding pharmacists are well-versed in this kind of stuff because they’re often compounding for patients with “unusual” cases. (Some small, independent pharmacies do A LOT of compounding–the fast walk-in type don’t do as much.) Just an idea.

  2. triciaruth July 10, 2013 at 9:06 pm #

    I was also going to say see if you can find a different prep.
    With the levothyroxine, what are your TSH levels? Doctors will say you are on an adequate dose when your TSH comes back into the ‘normal’ range which is huge, but also means that you are still producing TSH which you shouldn’t need to do if you are on levothyroxine. My CFS consultant said I should be at TSH of 1or less. I know I didn’t start to feel better until my TSH levels got down there.

    Also, levothyroxine & amatryptaline/melatonin break down in the system in different ways, the former takes longer to break down (it takes a while to build up and break down- the reason you need to wait about 6-weeks to test after changing a dose) whereas the others will break down within hours and be out of your system.

    Hope that helps!

    • myjourneythrume July 12, 2013 at 8:32 pm #

      Thank you for your comment! That is all really interesting to hear. I don’t know what my exact thyroid levels are but actually had routine bloods taken today so will know soon! All I know is that my thyroid was at the low end of the normal range. My GP didn’t want me to start taking Levothyroxine as he feared my thyroid would get lazy but my ME/
      CFS consultant said one approach to ME/ was to basically overdose the thyroid to boost it into better performance. Your comments makes me wonder if my GP was actually right. Guess my blood test results may shed some light on things. Thank you for reading and commenting, I appreciate all advice 🙂

      • triciaruth July 12, 2013 at 9:34 pm #

        It is a difficult one – I’m on levothyroxine because my thyroid doesn’t work anymore so a slightly different situation. Good luck.

      • myjourneythrume July 12, 2013 at 9:44 pm #

        Thanks and same to you. Do you know why it stopped working? Please tell me it wasn’t taking Levo before you really needed it like I’m doing?!

      • triciaruth July 12, 2013 at 9:47 pm #

        No, it was 13-years of struggling on in high powered, high stress jobs with undiagnosed CFS that did for my thyroid! Took them long enough to diagnose it too.

      • myjourneythrume July 12, 2013 at 9:51 pm #

        I’m so sorry to hear that. Tho it does make me grateful in a way that my body broke when it did, only 4.5years in to life as a corporate lawyer, sounds like me and my thyroid may have had a lucky escape.

Trackbacks/Pingbacks

  1. The Queen of Food Intolerances: so what can you eat?! Part 1 | my journey thru M.E. - July 12, 2013

    […] as I had been. In fact some days I bloat very little now except for in the evenings after I take Amitriptyline and Melatonin (read my post about my medication induced bloating here). Other days I do bloat after eating but […]

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