Migraines and ME/CFS - Discussion on how they may be related

Eleanor said:
People say they're triggers because they confuse the consequence of the craving with the thing that really triggered it.
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I relate to that.

For decades I also assumed that I was foolishly "triggering" migraine the next morning by staying up too late, where I'd have an unusual boost of energy and want to work late - I've come to realise that energy boost was just a prodrome too.

Lack of sleep is a trigger for migraine, but for me that takes a few consecutive late nights, not just one without any other stresses.
 
When I entered menopause 11 years ago, I experienced bizarre episodes of turning purple/red all over my body, The tingling sensation started on the top of my head and moved downwards, I didn't feel hot or sweat. I looked in the mirror and I appeared severely sunburned. I called the emergency health nurse because I was panicked and thought I had an infection. My body returned to normal after 40 minutes, and it felt exactly like post-migraine without the headache /aura. I felt very sleepy and post-sickness migraine.

This occurred once/twice a year for 7 years. The exact same onset and same recovery period. The only difference was the red skin discolouration migrated differently, it was mostly around my joints, knuckles, knees, and ankles, back, nose and ears. I also felt a mild itchy sensation.

I haven't found any information online about this bizarre occurrence, and my GP told me, "I've never heard of that before" when she was in practice for 35 years. Seriously, I can't be the only person on earth who experienced this.

I haven't had a migraine in over 11 years since menopause. Did something switch off in the hypothalamus?
 
The links between occurrence, symptoms, hormones and sex differences are really interesting. And wow @Mij that sounds like quite an experience!

I only experienced migraines since getting me/cfs, onset and worsening of which included periods of severe headaches and nausea but only had a period of auras after being ill for some years. My mum started getting them when she was about my age and they’ve continued throughout her life, with and without auras, she doesn’t have me/cfs but does have PD so more potential neurological intrigue! (Or coincidence).

But that people seem to grow into or out of them perhaps is interesting.
 
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I don't think this thread has anything about comorbidity between ME/CFS and migraine yet, so here are two studies that say having one increases the risk of having the other. Disclaimer that I've only read the abstracts.

Increased risk of chronic fatigue syndrome in patients with migraine: A retrospective cohort study (2015, J Psychosom Res.)
After adjustment for the covariates, the risk of CFS was 1.5-fold higher in the migraine cohort than in the comparison cohort (52.72 vs. 28.85 per 10,000 person-years). Intriguingly, the risk was most prominent in the oldest group (≥ 65 years), with a 2.11-fold increased risk (95% confidence interval 1.31-3.41) of CFS. In addition, the adjusted cumulative incidence of CFS in the follow-up years was higher in the migraine group (log-rank test, P < .0001), and CFS incidence appeared to increase with the frequency of migraine diagnoses.
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Migraine headaches in chronic fatigue syndrome (CFS): comparison of two prospective cross-sectional studies (2011, BMC Neurol)
Migraine headaches were found in 84%, and tension-type headaches in 81% of Cohort 2 CFS. This compared to 5% and 45%, respectively, in HC [healthy controls].
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CFS subjects had higher prevalences of MO [migraine without aura] and MA [migraine with aura] than HC
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forestglip said:
I don't think this thread has anything about comorbidity between ME/CFS and migraine yet, so here are two studies that say having one increases the risk of having the other. Disclaimer that I've only read the abstracts.
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I don't think the data gathering methods in either of those is reliable.
One really needs a population-based cohort and precise clinical assessment. I don't know whether the CureME cohort reported on migraine.
 
Jonathan Edwards said:
One really needs a population-based cohort and precise clinical assessment. I don't know whether the CureME cohort reported on migraine.
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But CureME wouldn't be population-based, would it?

For the first 2015 paper, it at least looks like basically a random sample of the entire Taiwan population:
The NHI [Taiwan National Health Insurance] cover rate has reached over 99% of the 23 million residents of Taiwan since 1998. The Taiwan government entrusted the National Health Research Institutes (NHRI) to manage all reimbursement claims data from the NHI and to establish the National Health Insurance Research Databases (NHIRD).
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The study population was constructed from a subset of the NHIRD called the Longitudinal Health Insurance Database (LHID). The LHID was built from one million randomly sampled insured individuals from 1996 to 2000.
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The outcome definition might not be precise though:
An instructive study outcome was the occurrence of CFS (ICD-9-CM code: 780.71).
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780.71 is "chronic fatigue syndrome".
 
I thought it might be useful to explain a little bit about migraine as it is often thought of as an event of intense head pain whereas it is actually a lot more than just that. A bit like the way that ME/CFS is often reduced to just fatigue.

Migraine is a disease that people have 24/7. Intense head pain is just one symptom and is often referred to as migraine headache. There are many other possible symptoms and some people don't get migraine headache at all or only rarely.

Symptoms can occur across the body and, like ME/CFS, tests on the specific areas will usually come back normal. There are lots of additional symptoms such as light/sound/smell sensitivity, nausea, vomiting, visual disturbance, vertigo, slow gut motility, brain fog, fatigue etc

If people have certain symptoms they may be diagnosed with a subtype of migraine. So for example, vomiting and diarrhoea (abdominal migraine), vertigo (vestibular migraine), weakness or paralysis on one side (hemiplegic migraine), visual disturbance/temporary blindness in one eye (ocular migraine).

There are no tests to diagnose migraine.
 
Bethea said:
Migraine is a disease that people have 24/7. Intense head pain is just one symptom and is often referred to as migraine headache. There are many other possible symptoms and some people don't get migraine headache at all or only rarely.
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This is helpful to know..
I’m debating paying privately for the CGRP meds.. do migraine sufferers have to try multiple drugs to find one that works for them? I read they only help 50% of sufferers and 40% have dramatic improvement.
 
The reason I think it may be useful to look at migraine when thinking about ME/CFS is that the two conditions have features in common.

- genetic correlation of rg=0.45
- similar buspirone prolactin result
- more women than men affected
- possibly a bimodal age of onset in migraine although slightly later than ME/CFS. Migraine late teens/20s and around 50. ME/CFS 16 and around 37
- trigger occurs around 12 - 24 hrs before migraine 'event' whether that is migraine headache or vertigo episode or vomiting etc. The timescale obviously fits with PEM in ME/CFS
- the triggers can accumulate until a threshold is reached and a migraine is triggered. (At least in my experience the same is true for ME/CFS. For example I can do 15 minutes of activity and be fine one day. Another day I can have slept badly and when I do 15 minutes of activity it triggers PEM)
- there are often symptoms before and after the main 'event'. (Again only my experience but I get symptoms before the main PEM 'event' happens and whilst I'm recovering from it)
- there is quite a bit of symptom overlap with sensitivity to light/sound/smell, fatigue, brain fog etc
- both have symptoms body wide but usually no abnormalities are found when looking at a specific area.
- both can be extremely debilitating leaving people lying in a darkened room unable to look at screens, tolerate audiobook/radio etc. Yet neither are usually fatal.
- usually both groups say they need to lie down
- both are fluctuating and both can have temporary remissions or permanent recovery

I seem to always be taking about migraine on here. I promise there are lots of other threads I want to respond to but writing invariably makes me crash and I find that usually someone else makes the point I want to make.

I'm not saying that migraine is the same as ME/CFS and it may well prove to be a dead end. I just feel that as there are established migraine research teams looking in similar areas it would be worth at least getting their thoughts and maybe seeing if ME/CFS could be included in some of the research.

As I have eluded to before, but I think it is worth reiterating.....
I'm currently feeling like a 10 year old in a hotel, looking for the restaurant but have accidentally wandered into a conference of very clever people who are saying things that mostly go over my head, and I'm wondering what on earth I am doing here.
 
Braganca said:
This is helpful to know..
I’m debating paying privately for the CGRP meds.. do migraine sufferers have to try multiple drugs to find one that works for them? I read they only help 50% of sufferers and 40% have dramatic improvement.
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Some people do need to try several CGRPs to find what works best for them, whether that is due to efficacy or side effects.

The figures I heard were:
25% had no more migraines
50% had 50% reduction
25% had no effect on their migraines

It's so difficult isn't it making these decisions especially when the medication is so expensive. I was fortunate that both medications (Atogepant and Ajovy) helped me (although I am very much looking forward to the PACAP trial results and hoping for further improvement).

If you are in the UK you might be able to access CGRPs (Rimegepant and Atogepant) for acute treatment through your GP. There are criteria for them though. Using them as preventatives requires a referral to a neurologist but in my experience they didn't even comment on ME/CFS, just focused on the migraine.
 
Bethea said:
As I have eluded to before, but I think it is worth reiterating.....
I'm currently feeling like a 10 year old in a hotel, looking for the restaurant but have accidentally wandered into a conference of very clever people who are saying things that mostly go over my head, and I'm wondering what on earth I am doing here.
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Hi I can definitely relate to this but those of us who have ME have our own experience to contribute so are definitely needed on the forum. I skip over a hell of a lot. In recent years the in depth science discussions have been increasing whereas before years a lot was about the issues with the PACE trial and Cochrane. It’s great to see those discussions happening but they are way way beyond my level. Recently ive also started making use of the ignore thread option for the in depth science discussions so I don’t have to use brain power concentration even on skipping through. It’s not cos I’m not interested but I know I’m not going to be able to get my head round it. The news team do a great job of bringing the highlights.
 
Bethea said:
The reason I think it may be useful to look at migraine when thinking about ME/CFS is that the two conditions have features in common.

- genetic correlation of rg=0.45
- similar buspirone prolactin result
- more women than men affected
- possibly a bimodal age of onset in migraine although slightly later than ME/CFS. Migraine late teens/20s and around 50. ME/CFS 16 and around 37
- trigger occurs around 12 - 24 hrs before migraine 'event' whether that is migraine headache or vertigo episode or vomiting etc. The timescale obviously fits with PEM in ME/CFS
- the triggers can accumulate until a threshold is reached and a migraine is triggered. (At least in my experience the same is true for ME/CFS. For example I can do 15 minutes of activity and be fine one day. Another day I can have slept badly and when I do 15 minutes of activity it triggers PEM)
- there are often symptoms before and after the main 'event'. (Again only my experience but I get symptoms before the main PEM 'event' happens and whilst I'm recovering from it)
- there is quite a bit of symptom overlap with sensitivity to light/sound/smell, fatigue, brain fog etc
- both have symptoms body wide but usually no abnormalities are found when looking at a specific area.
- both can be extremely debilitating leaving people lying in a darkened room unable to look at screens, tolerate audiobook/radio etc. Yet neither are usually fatal.
- usually both groups say they need to lie down
- both are fluctuating and both can have temporary remissions or permanent recovery

I seem to always be taking about migraine on here. I promise there are lots of other threads I want to respond to but writing invariably makes me crash and I find that usually someone else makes the point I want to make.

I'm not saying that migraine is the same as ME/CFS and it may well prove to be a dead end. I just feel that as there are established migraine research teams looking in similar areas it would be worth at least getting their thoughts and maybe seeing if ME/CFS could be included in some of the research.

As I have eluded to before, but I think it is worth reiterating.....
I'm currently feeling like a 10 year old in a hotel, looking for the restaurant but have accidentally wandered into a conference of very clever people who are saying things that mostly go over my head, and I'm wondering what on earth I am doing here.
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My personal reason for believing they are related is my family history. My mom gets migraines. My sister does too, but she was hospitalized for hers. I don’t get migraines, but I get tension headaches with my PEM about half of the time. I think that’s where I inherited the genetic risk for this condition.
 
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