Hi I've had ME for decades, but my migraines only started 7 years ago. The migraines are very disabling and usually last for almost a whole a day. I'd always suspected that migraines interacted with my ME, and both migraine and ME consultants thought this was likely. Recent experience with a new drug that reduces the severity of migraines (mostly) and leaves me with no PEM. The whole thing is over in a few hours. And I'm wondering if this sounds familiar to anyone here. Let me explain. I get migraines with a visual aura. They pretty much knock me out for a couple of hours but what follows - typically for over 12 hours - feels more like PEM: brain fog, pain all over, very bad fatigue and feeling ill (malaise). The only odd thing about it is it happens quickly, not with the usual next-day delay. I recently tried rimegepant to treat migraine attacks in addition to monoclonal anti-CGRP monoclonal injections. If taken the moment an attack starts, they cut down the severity of the initial migraine (1st 2 hours) by about half. No other migraine med had helped once a migraine attack had started. But the overall migraine experience was similar as after a couple of hours things got worse with what feels just like PEM. My consultant then switched me from the monoclonal injections + rimegepant to just a newly approved med called atogepant (another of the new oral, non-monoclonal anti-CGRP meds). Many times these pills - which are meant to be prophylactics (stopping attacks from starting, not treating them once they do) lead to very mild migraines - but no PEM. I would take that every day of the year, given that I've been getting bad migraines on most days. To me, it seems as if the new pill atogepant makes the migraine mild enough that it no longer triggers PEM. So I have a mild migraine for a couple of hours and that is it. Happy days! Does this sound familiar to anyone? Thanks Pi
Hi Pi, I'm glad you've had some success in treating your migraine What you describe is reported quite commonly by migraineurs, including the uncomplicated patients that don't have ME/CFS. There may be some crossover but its probably not PEM as we understand it in ME/CFS. There's increasing awareness that migraine attacks often take place over multiple days, with pre-headache & post-headache phases. The most noticeable prodrome feature I have is actually more energy & high mood - it results in me being more active and/or staying up late due to not being tired. Until recently i'd blame myself for getting a migraine the next day... but the reality is the migraine was underway already and that's why I behaved differently. In recent years my attacks have gone from 1-day attacks to multi-day and I have struggled to abort the attacks on day 1. As i've trialled more effective acute drugs/doses i've realised that the onset of the postdrome (for me that's the PEM-like crushing fatigue/low-mood) is actually a relief, because it means the treatment worked, the attack is ending and it won't roll on again to the next day - though i'll feel bloody lousy until after a good sleep! Generally i've found that as the migraine attacks become milder sometimes I don't even notice the prodrome/postdrome features. Prophylactics have helped a lot with this, but also just having more effective treatment of the acute attacks appear to "calm down" the brain and help break a cycle of migraine severity/frequency. Perhaps Atogepant is having this sort of indirect effect on you, if not limiting that postdrome severity directly. Thanks for sharing your experience, i'm keen to supplement the reasonably effective Botox injections (indicated for chronic migraine) with Atogepant soon. Ryan
Thanks for posting your experience. For me it's been the other way around; I've suffered with migraines since early childhood. After a particularly severe migraine I do experience what's referred to in the literature as the "postdrome", but for me it's very different from PEM. Migraine postdrome feels, to me, more like a hangover, whereas PEM feels more like severe flu. Once again we have the problem that we only have words like "fatigue" and "exhaustion" to describe such things but for me they are qualitatively different and each have distinctive features. I've tried almost every analgesic, triptan, anti-CGRP medication, serotonergic and pain modulator in existence for migraine, with some successes over the years, although the successful ones tend to stop working eventually. Greater occipital nerve blocks helped but I can no longer travel for them; Botox didn't help at all. I had no luck with two anti-CGRP mAbs or with rimegepant; I haven't tried atogepant yet but that's probably my next port of call. None of them have had any particular effect on PEM although a couple of the pain modulators (including both gabapentinoids) did dampen down the widespread diffuse pain I get with ME.
That's about right for me too - no swollen glands or feeling "poorly" with a migraine. Sleepiness (different from fatigue) is more present with the migraine but not in PEM too. One crossover I do get though is they both tend to worsen autonomic function, i'll find being upright a lot less tolerable, overheat more easily etc. Rather like a hangover too! So sorry to hear you've had such little help from treatments. Have you ever tried Pizotifen?
First migraine aged 4 or 5. My PEM is flu-like symptoms, my postdrome is more like a hangover after a very good night out. I often forget what it is, and say I have a hangover even though I haven’t had alcohol in years.
Other way round for me - migraines are triggered by PEM. My migraines respond well to triptans fortunately. If I’ve run out of triptans and have a bad migraine then yes the migraine can trigger/deepen the PEM, especially when my ME is in a v severe phase (I’m currently moderate/severe but it oscillates from year to year), when any added strain on my body makes things worse.
Thanks, @Ryan31337 and @Nightsong for your insights. I've had migraine for seven years without reading too much about others' symptoms and hadn't realised how close to PEM a postdrome could be (or at least the description of it). But I noticed that for you and @MrMagoo your PEM is different from the postdrome. For me, they are identical - except that caffeine (weak green tea for a very small dose) relieves the post-migraine stuff a bit - but has no impact on pure PEM. Up until the last few months and the G-pant meds, I thought the 'postdrome' could just be part of the migraine. But my experience with rimegepant and atogepant had made me question that. They can have quite a big effect on the migraine without touching the PEM. This means I have a moderate migraine that allows me to function some, then, after a couple of hours, the PEM/postdrome hits and I am incapacitated. Do others have the same thing where the migraine is short and moderate followed by a long and grim 'postdrome'? It's interesting (but also sad) to hear how others have also struggled to find drugs that work. As if PEM isn't bad enough! It's good to hear about other people's experiences. Thanks, everyone.
I'd recommend having a read up on chronic or "transformed" migraine - it's more nuanced than just "lots of episodic migraine". Possibly related to that are just the changes in presentation that can occur as episodic migraineurs age. I had strictly episodic & uncomplicated migraine for about 15 years. For the next 10 years I noticed a change, with a reduction in severity but episodic attacks became multi-day events, with sensory issues, dental pain and other neurologic weirdness (I didn't realise they were related until recently). In the past year something gave it a real kick and those issues became chronic until botox calmed them down again. It can definitely be a changing picture over the years and if they're coming often enough it can get quite blurry.
Thanks for the suggestion. I suspect that my changes are not part of a gradual change in my migraines as they are so tightly tied to the gepants. On some days on rimegepant, I had a moderate migraine followed by full post-drome/PEM that was much worse than the migraine. This had never happened before. On days I didn't take rimegepant the migraines were as they always were. When I switched to atogepant (taken daily as a prophylactic instead of to treat an attack), I had the same experience of much milder migraine and full-oon postdrome/PEM (though I still sometimes get the full works for a migraine) This shift happened suddenly and is tied to gepants after 7 years and about a thousand migraines on other/no meds. I'm sorry to hear you've had such a sudden deterioration. One consultant I saw said that migraines don't stay the same and my best hope was that at some point I'd have fewer/milder migraines (unmedicated baseline). Maybe I need to be more patient.
