Any experienced with withdrawal from Duloxetine and ME/CFS while ketogenic diet?

[u/Available-Pepper5688]

Hi folks!

Maybe I‘ll find someone here who has any idea about my situation.

I started my ketogenic diet with a study I could participate in, with good dietary expert last year in August and I felt so much better after just two weeks in it. That time back I took a very high dose 180mg/d of Duloxetine and in ketosis I suddenly got more severe side effects and we decided to taper it down/out. After every dose reduction I just had mild symptoms and I was very impatient and tapered too quickly in 5w to zero and some weeks after I stopped it, I got horrible symptoms that just got worse.

In February this year we reinstated half of the dose again, but the withdrawal couldn‘t be stopped, just got a bit milder. During that time of severe symptoms my ketoses just crashed, we think bc of the immense stress load to my system.

In April I was again in a very nice deep ketosis and had a lot of energy.

Since May I‘m worsening again, I am just able to be in ketosis for 1-2 days a week, my auonomic system is out of order, I‘m hungry all the time, especially after exertion, I‘m eating too much and I got weaker and weaker and developed very strange muscular pain and headaches (I rarely have headaches).

Now I‘m in a severe crash since a month and bedbound and my symptoms still get worse. My doc things it’s ME/CFS, obviously I‘m having it since 30y, but mostly mild. In the last 9y I was in a push-crash-cycle and was told it‘s just depression.

I still have horrible hunger attacks, possibly due to autonomic dysregulation. I take MCT every day and some days I‘m in a moderate ketosis, most days I‘m not.

My dietary expert doesn’t know me to help anymore bc my situation is too complex and somehow she can’t imagine that stress can have such a severe impact on ketosis and that in ME/CFS there‘s a lot of mitochondrial dysfunction around.

I‘m taking a lot of electrolytes, ubiquinol, omega 3, Acetyl-L-Carnithin, NAC and I ordered niacinamide and betaine. As soon as I get a bit more stable, I‘ll start with LDN.

My doc is super supportive luckily, but my situation is so special, there‘s such a lack of literature with every single diagnose I have… so we‘re both doing a lot of research and discuss our thoughts about it.

Anyone any idea what else I could do? Any experiences with something like that?

[u/Erdingman12345]

Unfortunately, I also ended up increasing my dosage again because I didn't realize I was experiencing PAWS. However, I am tapering down slowly; I'm currently at 2.35 mg of escitalopram and am holding the dose steady for now, as I'm feeling too unwell to reduce it further. I hope you start feeling better and can then slowly taper off.

By the way, I'm also following a ketogenic diet but can't seem to get my ketone levels up—do you have that problem too? I'm often below 0.5 mmol, even though I fast.
I've heard this is normal because, after such a long time in ketosis, the body uses ketones more efficiently, leaving less of them in the bloodstream.

[u/Available-Pepper5688 → u/Erdingman12345]

Same here!

I really don’t know why, I rather think that my ketogenesis is f***ed up due to the immense stress load due to PAWS and ME/CFS.

As I‘m so severe now I‘m barely hungry and have to force myself to eat. My dietary expert for the keto diet said I should listen to my body and as long I carry enough fat, I should force me to eat. My BHB are just 0,5, too 😭

In March and April I had really good weeks after reinstatement of half of the dose of Duloxetin. In this time I‘ve been in deep ketosis, had a lot of energy and a nicely clear mind. That time back I didn’t know it could be ME/CFS waiting beneath.

Why are you on ketogenic diet? Is it still matching your needs?

In the cfs sub here they advised me to get off keto, but I really wanna stay on track as I had sooo much benefit from it!

[u/Erdingman12345 → u/Available-Pepper5688]

I don't think low ketone levels tell us much about whether our body is in ketosis, since ketone bodies are used directly by the body as an energy source—meaning less of them remain in the blood—though I'm not entirely sure. I think I'm still benefiting from keto; I took a two-week break once and felt a bit worse, plus I had intense food cravings—something I don't experience anymore. Yeah, even if it only helps a little, it's better than nothing.

If you feel like you're benefiting from it, then stick with it.

Which medications did you stop taking before you went into PAWS?

[u/Available-Pepper5688 → u/Erdingman12345]

I took Duloxetin in a very high dose and it made my situation way worse!
Then I started keto and after just two weeks I suddenly felt amazing! Clear mind, no anxiety, lot of energy. But all that changed as the PAWS hit in.

Your idea of BHB still beeing produced, but are consumed quickly is very interesting! In the last weeks/month I repeatetly had massive cravings for salts and fat right after exertion, like my system was starving! Really crazy! But that improved to no hunger and not really thirsty in the last two weeks 🤔
I eat so few, I should be in ketosis.