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| Looking towards the West Shore, Llandudno |
On the one hand I had assumed that nothing bad would happen as a result of this increase, and on the other hand I had left the free time to make sure if something did go wrong, I would be able to work through it. Of course, despite my optimism I did get a bad reaction. I think this was partially because I had also done so much in the latter half of August, and I was already suffering and trying to recover from that, so the increase just tipped the balance. I was really sick... It took me about 8 days to feel the side effects of the increase lessening. One has to really hold onto the thought that 'this is just temporary and will ease', because the feeling is so bad. I have been suffering really bad brainfog/cognitive impairment, and that doesn't seem to have lifted... blah. I am hoping over time it will improve again.
I have one more increase of LDN to do, and will probably do that in the second half of October. I will be staying on LDN indefinitely. I can't see myself willingly coming off it now, as that July 2 day accidental break was a total disaster.
Now I feel I have experiemented with and realised the value of LDN in my treatment plan, I am moving onto looking into Mast Cell Activation and trialling treatment. I will probably post about that separately next time I write on here.
LDN did nothing for me but stop my sleep. Sorry about your side effects, but I'm happy that it is helping you! Can't wait to hear about your mast cell activation treatment.
ReplyDeleteHi Elizabeth
DeleteDo you have autoimmune thyroid disease as well as M.E.? I sometimes wonder if LDN is acting on that aspect in me?! A friend of mine who has not got M.E., but who has autoimmune thyroid disease and Lupus also has had improvements with LDN... so that's what makes me wonder. I will take whatever improvements I can get lol!
When I first took LDN I noticed it affected my struggles with sleep (I have struggled throughout my M.E. journey), but it did settle down after a long while (it seemed to take a lot longer in me than in other people). I still don't get consistently good sleep, but I get some nights that are a lot better than I ever had before it. I monitor how much deep sleep I get and it varies a lot. I noticed I need A LOT of deep sleep in order to feel more normal. It's really annoying! I agree with what you have written on your blog before about - if we could just get consistently good sleep all the time, perhaps we might feel better and heal.
Vicky-Louise
I never saw this reply! Yes, I have autoimmune thyroid disease (had toxic multi nodular goiters and had radioiodine ablation) as well as ME. I take T3 and T4 every day and, theoretically, shouldn't have symptoms from that anymore. What's the connection? I never really thought about my thyroid in relation to ME, believe it or not because it happened a few years before.
ReplyDeleteSleep is still such an issue for me. I've stopped all drugs, even melatonin, and just want to Getty back to a more natural rhythm. What do you use to monitor your deep sleep? I've just tried a Jawbone, but returned it... Xo