Post COVID Migraine in a Six Day Cycle

Hi folks, I have written a blog to log things I have discovered about the migraines I have been getting regularly in a six day cycle since COVID-19 infection.

I think it is due to cyclical inflammation, perhaps driven by a kind of predator prey cycle between my immune system and recurring coronavirus, causing calcium fluctuation linked vasocontriction, possible endothelial inflammation and microthombotic tendencies exacerbating sticky blood, which is an old problem for PWME, causing periodic blood flow difficulties in the brain.

I discovered I had to avoid protein and VitK and manganese in my diet during a migraine phase, plus a few other things.

Frankly it has been a desperate nightmare situation but, 'touch wood', the things I believe I have worked out about it helped me to reduce the severity of the migraines significantly so I wanted to share these in case it helps others with the same condition or provides food for thought for those trying to understand ME and longCOVID.

http://boolyblog.blogspot.com/

I am still trying to understand this situation, dont know how many other people it affects, so please feel free to join the discussion below if you have any ideas or comparable experiences.

 

@boolybooly did you experience migraines before getting Covid? Do you have aura with your migraines? I'm wondering if you're experiencing "Covid headaches". Could be something totally different.

 

Could be. Who knows? I havent heard anyone talking about cycles like this, which is why I am posting about it.

Maybe it is related to COVID headaches, if so then some of these observations could be relevant to others who consider they have those. I think the Mn VitK exacerbation is very curious in that context.

Could be a bit of both. Since it lasts three days it seems outside the bounds of a normal headache. It is certainly inflammatory in nature, while cyclical it is also exacerbated by food and migraine diagnosis runs in my mother's family. Is one sided. Higher severity includes nausea. So it ticks a lot of migraine boxes but is also a bit hard to characterise with standard diagnoses.

I did get recurring headaches before the COVID pandemic, each lasting multiple days. Possibly as a result of an infection around 2017* which caused symptoms suggesting enterovirus. That was a longer cycle of about 2 weeks, as I explained in the blog, COVID shortened the cycle from 14 to 6 days. But if you add COVID to whatever that was maybe you get a kind of hybrid COVID migrache or something. Meaning both could be happening at the same time and exacerbate each other.

Its hard to know about the aura. Only one in three people who get migraines experience aura. Plus I have had visual disturbances such as bows of light around bright or monochromatic light sources since ME onset 1986, which I never used to see before and never been without since. Tingles and l'hermittes are common for me with or without headaches. Its quite hard to know if a tingle is novel migraine aura or more ME!

(*EDIT in fact rereading my blogs I have had headache problems since at least 2015 and I remember having difficulties even earlier which lead to me rearranging my diet so I have a salad every morning and eat my main meal around 12 midday. 2017 was when headaches began to occur in a cycle which was shorter than my previous viral recurrence cycle and appeared to abolish it, for the record.)

 

When I was still working in the early stages of my ME I used to regularly get migraines at weekends. At the time I assumed it was part of what I now understand as PEM, though I did not have a label for it at that time. However this pattern was more marked when I started working part time (Tue, Wed & Thurs) when my general symptoms lessened by the start of the week and then worsened again by the end of the week.

Though I still get migraines linked to PEM now, I think food may have been a factor to my previously regular migraines. Since stopping work I discovered I am gluten intolerant, and when I am not regularly eating gluten, consuming some will trigger a migraine almost exactly twenty four hours later. However before I eliminated gluten from my diet it made me feel generally yuckie, adding to my general ME symptoms, but I would be much worse as soon as I stopped eating it, getting a migraine and nausea, even vomiting, between 24 and 48 hours after not eating it. In retrospect when I was still working I relied on sandwiches and pasta on work days having no energy to cook, but at week ends I would try to cook from scratch and tried to avoid any processed food stuff. So it is possible that my regular migraines then were related to my gluten cold turkey each Friday to Monday.

Certainly I get far fewer migraines now I avoid gluten (and caffeine and alcohol and some chocolate) completely, though I mentioned above I still get them when in more severe PEM.

 

Maybe something in your immune system was reacting to the gluten and causing a delayed headache.

I notice that I now get headaches at the end of an identifiable immune crisis.

There is a review paper here suggesting that having a headache predicts a better survival rate for COVID.
Gallardo & Shapiro "The relationship of headache as a symptom to COVID-19 survival: A systematic review and meta-analysis of survival of 43,169 inpatients with COVID-19."
https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.14376

Which indicates helpful immune activity of some kind associated with a COVID headache.

 

I probably should have said in my last post that I have been excluding gluten for several years now (mentioned in my blog), so that is not involved in my current problems.

I just wanted to let people know I have updated my blog about this to share some good news subsequent to a helpful development in my management of my condition based on an observation of one cycle where I had no migraine pain.

I checked my food diary, replicated the cycle and then deduced and verified that taking a dose of lysine just before or during the migraine phase is helpful in reducing severity. I think it is because lysine EDIT- assists calcium transport, which as I discussed in my previous blog, may help reduce vasocontriction exacerbated by calcium, by transporting calcium between blood and cells of different tissues, distributing Ca and assisting homeostasis. FYI

https://boolyblog.blogspot.com/2023/11/lysine-dose-may-reduce-migraine.html