Improving energy but worsening brainfog

[SpinachHands]

So my partner who I care for has slowly been seeing improvement in their ME/Long COVID, feeling more energy, less fatigue, but they still have debilitating MCAS and dysautonomia keeping them bedbound. However we've noticed their brainfog is getting worse almost daily. They're struggling to remember things they just said, jumbling up words, and generally having worse headaches. Everything else is either staying consistent or improving so we don't know why this symptom is rapidly getting so much worse. Any ideas on what can cause brainfog to worsen? Could it be an oxygen/circulation issue? I'd thought it could be inflammation from the MCAS, but on days their MCAS isn't as bad, the brain fog still gets worse.

 

[Wishful]

For me, there are several foods that increase brainfog, and which foods or nutrients those are changes occasionally. That isn't to say that your partner's brainfog is due to a food, but that there are many possibilities. We don't know what causes brainfog, or even the mechanism involved, so it really could be anything. If you've been keeping track of changes in your partner's food, activity, and environment, maybe you might find something to experiment with, but there's no guarantee that it isn't a factor you aren't aware of. I never figured out the causative factor in most of my ME changes.

This morning, I verified that oats are still inducing my brainfog. I seem to have verified that arginine blocks getting extra brainfog from protein-rich foods. So, it is possible to identify causes and find treatments. It's a matter of detective work, and luck.

 

[wabi-sabi]

I notice things like this myself sometimes. I'm not sure why, but I have a few thoughts. 1) As I get more cognitively impaired I am worse at managing my energy. I might feel better physically for a few minutes, so I use that energy instead of resting. This leads to me going downhill, meaning more cognitive impairment. 2) This could be a variation on tired and wired. The brain wears out before the muscles do. 3) Too much caffeine will do this to me too. 4) The hopeful interpretation: the brain is more sensitive so it improves last. Keep pacing and you might have an overall improvement.

Important part: keep pacing even when you feel better. Remember that brain rest and muscle rest aren't the same thing and you need both.

 

[Mary]

@SpinachHands - do you attribute your partner's energy improvement to anything? What comes to mind is that I've read that B12 helps many people with brain fog. So I'm wondering if a supplement or anything your partner is taking may be depleting their B12 or increasing the need for it.

This isn't quite the same thing but when I started taking folate, it was fabulous, increased my energy quite a bit. And then I was hit with severe fatigue. The folate was causing a functional potassium deficiency and when I added in sufficient potassium (titrated up to 1000 mg a day in divided doses over a couple of days), the severe fatigue abated and I was able to keep taking the folate. The same thing happened with B1 and phosphorous - B1 increased my need for phosphorous which took too long to figure out! But was great when I finally did. I still have to take extra potassium and phosphorous every day.

Has your partner started any new supplements or meds etc recently?

 

[SpinachHands]

@SpinachHands - do you attribute your partner's energy improvement to anything? What comes to mind is that I've read that B12 helps many people with brain fog. So I'm wondering if a supplement or anything your partner is taking may be depleting their B12 or increasing the need for it.

This isn't quite the same thing but when I started taking folate, it was fabulous, increased my energy quite a bit. And then I was hit with severe fatigue. The folate was causing a functional potassium deficiency and when I added in sufficient potassium (titrated up to 1000 mg a day in divided doses over a couple of days), the severe fatigue abated and I was able to keep taking the folate. The same thing happened with B1 and phosphorous - B1 increased my need for phosphorous which took too long to figure out! But was great when I finally did. I still have to take extra potassium and phosphorous every day.

Has your partner started any new supplements or meds etc recently?

They've been on high dose B12 for ages now, the only real recent changes are increasing ketotifen (which is what seems to be doing the bulk of the work improving their energy levels), and adding in potassium and vitamin C. We added the potassium as this MCAS flare happened after taking choline and the idea was the potassium could help balance any methylation issues the choline caused but now I'm thinking maybe we try stopping it for a bit to see if we've swung things too far the other way...

 

[Mary]

@SpinachHands - I noticed in an earlier post that your partner was taking 99 mg. of potassium. This is almost nothing as the RDA is 4700 mg. So if 99 mg. (1/47 of the RDA) is what your partner has been taking, I don't think it's the problem. I take 1000 - 1300 mg. a day and some members here take more than that.

 

[wabi-sabi]

only real recent changes are increasing ketotifen

It's most likely the ketotifen. Notify your doctor of the medication side effect and see what they say. Even if there isn't a good answer to what to do abut it, the doctor needs to be aware it is happening.

 

[SpinachHands]

It's most likely the ketotifen. Notify your doctor of the medication side effect and see what they say. Even if there isn't a good answer to what to do abut it, the doctor needs to be aware it is happening.

I really hope it's not that, this is the only thing that's had a positive impact on their health in a year....
I will bring it up to the prescribing doctor though.

 

[wabi-sabi]

I will bring it up to the prescribing doctor though.

There may be things you can do with dosage and timing to get the benefits without the side effects- this is what I do. There are also other medications for MCAS that are helpful too.