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.
Thanks for sharing your experience, @boolybooly. I can see you have been very careful to test and retest, so to avoid making assumptions from what may be coincidences between symptoms and food intake. It's good to hear you have managed to find ways to reduce your headache symptoms significantly. I think the main thing it shows is that we are all different, with individual reactions to foods, supplements and medications, so we can't assume what works for one person will do so for another. For those without relevant knowledge, I'd suggest only doing an elimination diet with the help of a professional dietician if you can find one.
@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
OK this is probably the best place to add this, I want to log recently observed phemonena. I may blog it later if it would be potentially useful for others. Writing and discussing here helps think about that. Bottom line, recently had two weeks of heavy phantosmia following a strange relatively severe 3 day headache with cutting pains in my head. It started mild in the first phase and was very mild in the second day i.e. a lull, then much more severe on the third day. These two phases I have observed before and think of as vasocontrictive and inflammatory. They were previously apart like this over three days every three days, making a six day cycle and steps I took reduced severity and they had begun to coalesce into one day. I hypothesise this is something to do with a recurring covid infection producing spike proteins blocking ACEII receptor hence the vasoconstriction phase and then an immune clean up causing inflammation and microthrombotic tendency causing the second phase of more severe migraine like headache. This recent episode was much more severe all of a sudden and I think it was the same kind of infection but possibly a major recurrence or more likely reinfection, possibly with a new variant hence the much stronger inflammatory phase and long drawn out 2 week recovery phase. The opportunity for infection is low as I am housebound but the timing followed a Waitrose delivery, which would match given a few days incubation and the "rough" day I recorded in my diary before the first headachey day. During recovery I had intriguing phantosmia of a pungent chemical like leaking refrigerant, which appears not to be due to any external phenomenon and I have had it before during previous suspected COVID infections e.g. omicron. I think it is likely to be entirely due to infection of the upper respiratory tract as it is a known COVID symptom. It took two weeks for the phantosmia to clear, its end was marked by heavy phlegm consistent with a URT immune response. My previously regular inflammatory cycle seems to have been upended by this and is currently unpredictable, though there is some hope it is a bit longer and has been stretched to 9 days instead of 6, which is OK but I feel more fragile in the less headachey phase at the moment and do not dare have much protein, as this can cause or exacerbate headaches. My conclusion is there is likely to be a new wave of COVID infection going around out there and possibly a new variant and I have just had it.
Update on the update, the recovery phase has settled into a longer than usual period without migraines. I did get PEM after driving 1mile to post my postal ballot and then being intercepted for chats by both my neighbours which is unusual to say the least as I usually chat to them around once a month and for them both to buttonhole me on the same day I venture out for the first time in a year is as if the universe were conspiring to give me PEM, anyway it succeeded and I had a headachey day with what I call 'cutting pains' in my head and am still recovering three days later. It was like the infection pain above and not like the typical migraine which is why I say inflammatory related migraines have been less evident over the last couple of weeks or have changed character. This is a welcome change. It has happened before when I get an infection plus a recurrence of one or all of my other passenger viruses. In this case I noticed Bornholm symptoms (indicating enterovirus activity) plus prodrome (of HSV) all at the same time as the apparent infection. So goodness only knows what was going on in there but it felt like a multi-whammy, which I have had before and the outcome is a stronger than usual immune stimulus and it changes things but what next is hard to predict. Its like a dice throw. Wish me luck! I think another contributor to my less headachey situation has been Nattokinase. I take 2500FUx1 daily and judging from my experiments & diary it seems to take about two weeks regular dose to kick in and then it reduces migraine severity for COVID related headaches in the inflammatory phase, possibly by reducing thrombogenicity. I just thought I would mention it as I am now convinced enough it is helping to be taking it regularly. So that may be another factor.
