Migraines bear some surprising similarity to ME/CFS and FM and some believe the three diseases are closely related.
It’s amazing sometimes what you see if you look. A blog on the causes and possible treatments for the very troubling photophobia, or light sensitivity, that some experience turned into a deep dive into migraine and its similarities to diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and migraine.
Photophobia
“Photophobia” (fear of light) – it’s a terrible term that underscores just how drenched in psychology the history of medicine is. A hypersensitivity to light becomes a “fear of light” (ouch). We’ve come a long way, though, since the term photophobia was created. While the term suggests it’s a psychological condition, medicine now recognizes it to be an abnormal sensitivity to light that causes pain.
Hypersensitivity to light in chronic fatigue syndrome or fibromyalgia has always seemed like a strange and impenetrable symptom, but it’s not unique to either disease and its biological roots are being sussed out in other diseases that make sense for ME/CFS. Hypersensitivity to light can occur in many diseases including concussion, traumatic brain injury, autism, eye diseases, etc. The most prominent and promising of these with regard to ME/CFS and FM, however, is probably migraine.
Migraine has suffered from a similar bias in the medical profession as ME/CFS and FM have. It affects tens of millions of Americans, and is the 12th most disabling disorder in the U.S., but has had the misfortune of being a kind of disease (female-dominated, invisible, pain and fatigue causing, difficult to treat, low mortality) that the medical profession and the NIH have traditionally downplayed.
The good news is that NIH funding for migraine – which as recently as 2020 was a measly $28 million a year – has been, as a result of an increased emphasis on pain, bumped up this year to $48 million. It’s not yet commensurate with migraine’s immense disease burden, but it’s a good start.
The Migraine, Fibromyalgia (FM), Chronic Fatigue Syndrome (ME/CFS), Irritable Bowel Syndrome (IBS) and Gulf War Illness (GWI) Connection
The fact that migraine appears to be one of the more common comorbidities of ME/CFS, fibromyalgia, irritable bowel syndrome (IBS), Gulf War Illness (GWI) and perhaps long COVID – and shares quite a few features with it – suggests that understanding what’s happening in light hypersensitivity in migraine, and in migraine itself, might help us understand what’s happening in ME/CFS as well.
A large study (n=1,700) found that no less than 56% of fibromyalgia patients met the criteria for migraine, and the penalty for having both fibromyalgia and migraine was steep indeed. Women with FM and migraines had significantly higher chances of also having been diagnosed with hypertension (p<.004), asthma (p<.01), irritable bowel syndrome (p<.02), depression (p<.0002), anxiety (p<.001), PTSD (p<.005) and finally (and most of all) chronic fatigue syndrome (p<.0001).
Twenty years ago, Puri and Chaudhuri noted how similar chronic fatigue syndrome was to migraine. Ten years ago, as Baraniuk’s studies indicated high rates of migraine were present in ME/CFS, other studies showed that many people with migraines also meet the criteria for ME/CFS.
In 2013, Rayhan and Baraniuk were so taken with the similarities between migraine, ME/CFS, FM, and GWI that they called for a ‘fresh, systems biology’ approach in ME/CFS, GWI, FM, and migraine which took into account all the systems involved in filtering and assessing sensory data from the body. Indeed, migraine, ME/CFS, FM, and irritable bowel syndrome were among the eight pain conditions a 2015 NIH report proposed “share common underlying disease mechanisms”.
Signs and Similarities
Migraine, ME/CFS, FM, and other diseases share a considerable number of symptoms. The experience of an ME/CFS crash, fibromyalgia flare, or migraine attack can be quite similar – a withdrawal to a quiet dark place to reduce exposure to painful stimuli and an inability to exert oneself. The horrific circumstances that the very severely ill often endure – unable to tolerate all sorts of stimuli – sound like a kind of everlasting migraine attack.
Migraineurs can often tell a migraine is coming on by the fatigue, the difficulty concentrating, and the gut problems (sound familiar?) that start showing up. After the migraine has passed, it often leaves in its wake the same feelings of fatigue, difficulty concentrating, etc. that it announced itself with. Just as it can in ME/CFS/FM, exercise and stress can trigger migraine.
As in ME/CFS and FM, women are much more likely to experience migraines than men.
There’s a similar gender gap – about three times as many women as men get migraines, a similar central nervous system hyperactivity, blood vessel problems, inflammation, gut issues (butyrate declines…once again), a hormone connection – migraines and ME/CFS symptoms are often substantially reduced during pregnancy – and even a possible energy deficit connection (see below).
In 2013, Baraniuk and Rayhan focused their attention on a part of the brain – the brainstem – which has received more and more attention in ME/CFS over time and is clearly involved in migraine. Their hypothesis regarding ME/CFS was similar to those proposed for migraine: a wave of low oxygen levels (ischemia) produces “cortical spreading depression” (CSD) which is followed by a wave of vasoconstricted (narrowed) blood vessels.
CSD depression typically leaves in its wake hypoxia (low blood oxygen levels) and an emphasis, not surprisingly, on anaerobic metabolism with a corresponding increase in lactate levels. Those increased brain lactate levels have been documented several times in ME/CFS. While CSD is usually a time-limited event, Baraniuk and Rayhan proposed that it’s an ongoing migraine-like condition has become chronic in ME/CFS and similar diseases.
Maizels’ migraine model, “Beyond neurovascular: migraine as a dysfunctional neurolimbic pain network“, which specifically included fibromyalgia, proposes that dysfunctional brain networks – again originating in the brainstem and reaching out to the limbic system – produce both migraine and fibromyalgia.
Migraine is not usually included in the spectrum of ME/CFS/FM diseases – ME/CFS, FM, IBS, POTS, EDS – but it’s a common comorbidity and shares some interesting features. Whatever the reason, when we go looking for answers to these diseases, migraine should be one area we keep an eye on.
One startling new connection has recently popped up – migraine as a brain energy disorder.
Chronic Fatigue Syndrome and Migraine – Two Brain Energy Disorders?
More recently, migraine researchers have even proposed that migraine is a kind of energy depletion disorder. One study found – to the researchers’ surprise – that instead of finding problems with blood vessel dilation or increased glutamate levels, it was increased lactate levels in the brain (i.e. problems with energy production) that they found were most associated with migraine.
In between migraines, brain energy levels drop.
Migraines appear to occur when a mismatch between the brain’s energy reserve and its workload occurs. It appears that in between migraine attacks, the brain’s energy levels become depleted. Whether this happens because the brain is in a hyper-excitable state that chews up energy or because of a mitochondrial problem is not known. (Just as in ME/CFS, it’s possible that high oxidative stress levels may be interfering with mitochondrial production in migraine.)
It’s possible that the migraine is actually an attempt by the brain to rejigger itself and recover from its energy depletion. Bad migraines, after all, make it just about impossible to do anything. One review noted, “An increasing amount of evidence – much of it clinical – suggests that migraine is a response to cerebral energy deficiency or oxidative stress levels that exceed antioxidant capacity”, and that the attack may actually be a way of restoring “brain homeostasis…”
One wonders if a crash, flare, or relapse achieves the same purpose in ME/CFS? After all, the symptoms are synonymous with “sickness behavior” which the brain invokes during an infection to encourage the individual to rest and isolate oneself.
It’s fascinating – and encouraging – to watch the connections between these diseases pile up. The more connections ME/CFS has with other disorders, the greater the chance that a breakthrough in one will help the other one out.
But what about the light hypersensitivity seen sometimes in these diseases?
Shedding Light on the Light Hypersensitivity in Migraine, ME/CFS, and FM?
“The Neurobiology of Photophobia” outlines a strong thalamus connection that regulates, yes, the autonomic nervous system, made up of the parasympathetic (rest and digest) and sympathetic nervous system (fight or flight) – an almost ubiquitous presence in ME/CFS and FM.
It’s believed that, in migraines, light activates pain receptors in the trigeminal nerve that runs across the face; i.e. it stimulates neurons that it shouldn’t. Some of these neurons lie in the thalamus – which occurs next to hypothalamus. These thalamic nerves project to parasympathetic neurons in the brainstem – thus potentially tying these two parts of the brain together.
The thalamus (pictured) and the hypothalamus appear to play a key role in migraine.
Because these light-sensitive neurons project not just into the auditory and olfactory cortexes of the brain but also to the areas of the brain that affect movement, it’s easy to see how amped, hypersensitized thalamic neurons could produce many symptoms. Plus, because these sensitized neurons exist in the dura (i.e. the connective tissue that surrounds the brain and spinal cord), it appears they can cause widespread sensitization – causing widespread pain and allodynia (sensitivity to touch) in other parts of the body.
In fact, studies indicate that the presence of light evokes many more symptoms than pain – many of which appear to be triggered by the autonomic nervous system.
Exposing migraineurs to different light wavelengths (blue, green (not all green light is helpful apparently), amber, and red) resulted in a wide variety of hypothalamus-triggered autonomic symptoms including chest tightness, shortness of breath, fast breathing, lightheadedness, and dizziness, dry mouth and stuffy nose. Other symptoms labeled as non-autonomic triggered symptoms included thirst, hunger, drowsiness, tiredness, sleepiness, and fatigue. (Sleepiness and fatigue could certainly be autonomic related.)
Emotional symptoms ran the gamut from “irritable, angry, nervous, hopeless, needy, agitated, sad, scared, cranky, upset, depressed, disappointed, jittery, worried, stressed, anxious, panic and fear”. When positive emotions were recorded, they tended to express feelings of relief and safety (happy, relaxing, soothing, and calming.) All in all, they demonstrated that exposure to light during migraine attacks produces more than just pain.
The light sensitivity issue in ME/CFS/FM, then, might not be as big a mystery as it seems. If it’s similar to what’s happening in migraines, it may all come down to the autonomic nervous system, brainstem, and/or brain energy issues.
Treatment Possibilities for ME/CFS/FM?
Given the similarities between ME/CFS and migraine, and the idea that people with ME/CFS might be in a kind of chronic migraine-like state, it’s possible that migraine treatments might help. Ten years ago, both Maizels and Baraniuk proposed that people with ME/CFS, FM, and/or GWI might be able to benefit from migraine treatment protocols. In fact, Baraniuk and Rayhan suggested that given the similarities in the two diseases, anti-migraine treatments could even be helpful in ME/CFS patients who are not experiencing migraines.
Treatments
It’s perhaps not surprising that some migraine treatments overlap with ME/CFS/FM.
Herbs that studies suggest may be helpful with photosensitivity include Petasite extract (75 mg twice a day) and feverfew (Tanacetum parthenium) (6.25 mg. 3x daily).
Drugs include extended Cycle Combined Oral Contraceptive Pills, tricyclic antidepressants such as amitriptyline (10 -25 mg) at bedtime, topiramate (anticonvulsant -100 mg/day after slowly increasing the dose from 25 mg/day; can increase fatigue), beta-blockers such as timolol and propranolol, and valproic acid (very effective but can cause gut symptoms).
Triptans (tryptamine-based medications) can reduce light sensitivity temporarily and speed up recovery times (and have side-effect issues). Pilocarpine was developed to relieve dry mouth and inner eye pressure in Sjogren’s Syndrome chronic dry mouth but has also been shown to reduce light sensitivity as well.
Acetaminophen seems like an odd choice, but studies have shown it can – sometimes taken with caffeine – temporarily relieve light sensitivity. That’s an interesting finding for me as caffeine can at times greatly reduce my symptoms.
Anti-CGRP Drugs
If there’s a potential breakthrough in migraine for some people ME/CFS and FM, it’s probably in the remarkable explosion of the anti-CGRP drugs now available. No less than 9 anti-CGRP drugs have been FDA-approved for migraine in the past five years. Why have so many drug companies leaped into the anti-CGRP market? Because the biological work done to understand the role CGRP plays in pain left them a good biological target. Plus, a dedicated effort by the headaches community to closely classify the kind of headaches present left them a good disease target.
The new kids on the block, the anti-CGRP drugs are currently being tested in fibromyalgia and have already been shown in at least one FM patient to be quite helpful. Fibromyalgia, temporal mandibular disorder, and peripheral neuropathy were all recently listed as possible candidates for anti-CGRP drugs.
THE GIST
- A blog on the causes and possible treatments for the very troubling photophobia, or light sensitivity, that some experience – turned into a deep dive into migraine and its similarities to diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and migraine.
- Hypersensitivity to light in ME/CFS has always seemed like a strange and impenetrable symptom, but it’s not unique to it, and its biological roots are being sussed out in migraine and other diseases.
- The fact that migraine appears to be one of the more common comorbidities of ME/CFS, fibromyalgia, irritable bowel syndrome (IBS), Gulf War Illness (GWI) and perhaps long COVID – suggests that understanding what’s happening in light hypersensitivity in migraine and in migraine itself might help us understand what’s happening in ME/CFS as well.
- In 2013, Rayhan and Baraniuk were so taken with the similarities between migraine, ME/CFS, FM, and GWI that they called for a ‘fresh, systems biology’ approach in ME/CFS, GWI, FM, and migraine and questioned whether ME/CFS was a chronic form of migraine.
- Migraine, ME/CFS, FM, and other diseases share a considerable number of symptoms. The experience of an ME/CFS crash, fibromyalgia flare, or migraine attack can be quite similar – a withdrawal to a quiet dark place to reduce exposure to painful stimuli and an inability to exert oneself. The horrific circumstances that the very severely ill often endure – unable to tolerate all sorts of stimuli – could like a kind of everlasting migraine attack.
- Migraineurs can often tell a migraine is coming and leaving by the fatigue, the difficulty concentrating, and the gut problems (sound familiar?) that start showing up.
- A similar gender gap, central nervous system hyperactivity, blood vessel problems, inflammation, gut issues (butyrate declines…once again) a hormone connection, increased brain lactate levels, even a possible energy deficit connection might link these diseases together,
- Migraines appear to occur when a mismatch between the brain’s energy reserve and its workload occurs. It appears that in between migraine attacks, the brain’s energy levels become depleted. It’s possible that the migraine is actually an attempt by the brain to rejigger itself and recover from its energy depletion – perhaps in the same way a crash or flare does in ME/CFS.
- A paper, “The Neurobiology of Photophobia“, outlines a strong thalamus connection in migraine which impacts the autonomic nervous system, which is made up of the parasympathetic (rest and digest) and sympathetic nervous system (fight or flight). It’s an almost ubiquitous presence in ME/CFS and FM.
- Because these sensitized neurons exist in the dura (i.e. the connective tissue that surrounds the brain and spinal cord), it appears they can cause widespread sensitization – causing widespread pain and allodynia (sensitivity to touch) in other parts of the body. Indeed, light triggers a wide range of symptoms in a migraineur – many of which appear to be autonomic nervous system related.
- The light sensitivity issue in ME/CFS/FM, then, might not be as big a mystery as it seems. If it’s similar to what’s happening in migraines, it may all come down to the autonomic nervous system, brainstem, and/or brain energy issues.
- Treatment – see the treatment section for possible treatments. Suffice it to say that some ME/CFS researchers have proposed that even ME/CFS/FM patients who are not experiencing migraines might benefit from migraine drugs. With 13 migraine drugs approved in the last five years, 9 of which are anti-CGRP drugs – which appears to work best of all – the treatment possibilities for migraineurs (and perhaps others) are opening up.
- With its many overlaps with ME/CFS, FM, IBS, and others, migraine is a disease to keep an eye on.
Four FDA-approved anti-CGRP receptor antagonists are Ubrogepant, Rimegepant, Atogepant and Zavegepant. The four monoclonal antibodies approved are Fremanezumab (AjovyTM, Erenumab (AimovigTM), and Galcanezumab (EmgalityTM). They are all able to reduce light sensitivity and other sensory symptoms. They don’t work for all migraineurs, but they appear to be a considerable step up from other drugs.
Metabolic Approach
A paper that laid out a metabolic (energy production enhancing) approach to migraine (see below) noted that migraine drugs (topiramate, amitriptyline, Valproate) have been shown to improve mitochondrial functioning or reduce oxidative stress.
One metabolic approach to migraine suggested a nutraceutical approach that seems familiar. A systematic review found that high-dose riboflavin (400mg daily) “is well tolerated, inexpensive, and effectively reduces migraine headache frequency”. Four placebo-controlled double-blind trials and two open-label studies, found that CoQ10 treatment (400mg capsules or 300 mg liquid suspension daily) reduced migraine frequency. 2mg daily dose of folic acid (vitamin B9), combined with 25mg pyridoxine (vitamin B6) and 400μg cobalamin (vitamin B12), reduced migraine-related disability. Ketogenic diets and antioxidants are also recommended.
Green Light Therapy and Precision Glasses
Studies indicate that the thalamic neurons that get activated in light hypersensitivity are most responsive to blue light, are very responsive to white, amber, and red light, and least affected by green light waves. While research is still in its infancy, some studies have identified narrow bands of green light (low-intensity 230nm, 520±10 nm) which can decrease headache intensity and increase feelings like happiness, calmness, feeling soothed, and relaxed.
We should expect the most effective bands of green light to be better delineated over time. In the meantime, green light may be a type of light that people with light sensitivity might be able to tolerate better or even derive some comfort from.
Theraspecs reported that precision-tinted glasses produced a 74 percent reduction in attacks for people with migraine-related photophobia, and improvement in overall light sensitivity, spasm frequency and severity.
Mind/Body Approaches
Given the evidence that the autonomic nervous system is deeply involved in migraines, it wasn’t surprising to see Maizels emphasize educating his migraine patients about the role the limbic system plays in regulating mood, emotion, perceptions, and stress, and using stress reduction procedures to reduce the pressure on an already twitchy nervous system.
Pridgen Protocol
Finally, there’s the Pridgen protocol. If Pridgen is right that herpes infections are targeting the trigeminal nerve, then effective anti-herpes protocols should be able to tame the pain. In one case report, it did.
Conclusion
Where does migraine fit on the ME/CFS/FM/IBS/Long COVID disease continuum?
While migraine usually doesn’t occur all the time (thank god), both its before (or prodromal) phase and its after (or postdromal) phase produce many symptoms similar to ME/CFS and FM. During the actual migraine phase, many of its symptoms can occur in a person with ME/CFS/FM who is experiencing severe crash or flare, or in people with very severe ME/CFS experience.
Biological similarities abound as well, and some researchers believe ME/CFS/FM could be a form of chronic migraine and suggest that ME/CFS/FM patients attempt migraine protocols to see if they help.
Time will tell how closely all these diseases are to each other, but for now, migraine – particularly with its torrid streak of drug approvals (13 in the last five years) – is a disease to keep an eye on.
Many thanks, Cort. Interesting info. I used to have migraines but now have severe TMD, cervical dystonia, and occipital neuralgia, along with me/cfs and maybe long covid. Too much. But more hope on the horizon. How many of you have classic migraines?
It’s interesting. High CRPG levels have been found in TMD and who knows how many permutations that nasty substance can cause. I don’t know anything about occipital neuralgia but check this out.
https://academic.oup.com/painmedicine/article/21/7/1516/5698031
At the patient’s 16-week follow-up office visit, she reported 100% relief within 12 hours of the erenumab injection of both her occipital neuralgia and migrainous symptoms. She was still experiencing 100% relief from symptoms and had stopped taking the combination drug acetaminophen-butalbital-caffeine, as she had not required it since the erenumab injection. The patient reported being very happy with this result, as this was the longest duration that she had been without pain in over a year.
In conclusion, CGRP monoclonal antibody therapy is a safe and efficacious treatment of episodic and chronic migraine [4–7]; however, this medication has not been studied for the treatment of occipital neuralgia. This patient had a history of migraine headache and presented with occipital neuralgia, which responded poorly to occipital nerve blocks.
Cort, thanks a ton for the response and info…..very helpful!
I google out of curiosity and found this: https://www.nationalmigrainecentre.org.uk/understanding-migraine/factsheets-and-resources/anti-cgrp-treatment-for-migraine/
Well this makes lots of sense considering CFS/ME ppl have
with Too Much lactate in their muscles.
While Michael Phillips- Olympic champion swimmer… has nearly Zero lactate in his muscles.
,(and obvs energy to spare)
I surely can’t be the only severe ME patient taking the new migraine meds already for migraine? Maybe a poll Cort?
I trialled Ajovy and now have settled on Emgality, the Emgality helps my migraines considerably – neither of them touched my ME symptoms (including light sensitivity) even a tiny bit. The topamax I also take for migraines also does nothing for the ME, but does help the migraines a bit
Thanks for sharing, I’d love to see a poll too. I’ve had cfs for 12 years, migraines for about half of that, now I occasionally get the visual disturbances but not the pain (so weird), along with a long list of other issues.
I took have taken the CGRP medication for migraine, and also have fibromyalgia, ME/CFS. I tried Ajovy and Qulipta. Both helped my migraines but did not improve my other conditions. I discontinued the meds as I felt they were increasing my intracranial hypertension.
A poll would have been an excellent idea! We do have a treatment review program coming up though 🙂
The worst symptom of my M.E. is the severe pain in the back of my head and neck when I have “overdone” it. 😵💫
There have been some interesting findings with psilocybin and not just for cluster headaches but also migraines. I wonder if it’s effects might cross over into me/cfs? I think there is a FMS trial with it but I haven’t followed.
This study was commented on on our news yesterday. On longcovid and vision.
https://www.sciencedirect.com/science/article/pii/S2590109522000076?via%3Dihub
Without being able to digest this blog today, I’ve long thought that it would be interesting to pull together research findings (if any) on other sensory sensitivities (like noise, odours) and stimuli filtering issues from different conditions where they can occur (including as far as I know: HSP/SPS (Highly Sensitive Persons/sensory processing sensitivity), AD(H)D, autism, MCS, ME/CFS, migraine, pregnancy, post-traumatic stress disorder, schizophrenia).
You could add to the blog on photophobia Prusty’s finding of IgM against optic nerve water channel protein acquaporin 4 https://mecfs-research.org/en/mecfs-conference2023/ –> Prusty presentation starting from ca. minute 11:00, or https://mecfs-research.org/wp-content/uploads/2023/05/20230511-C7_BhupeshPrusty.pdf page 7.
It would be interesting to add these other hypersensitivities to sensory stimuli in a poll along with CFS/ME and migraine. One thing that stands out in my own family, too, is that those who are HSPs (most of my family) also have allergies. I do wonder how much of our symptoms are MCAS. I have had allergies all my life but only since 2019 when a Shingrix vaccine created an ongoing CFS reaction have I had dangerous allergic reactions (stings) vs just annoying ones prior.
Hi Cort,
light is making me so imbarreble exhausted in my brain, eyes. It costs so much energy. just like looking at a screen or reading this blog. I had once bought a Lux lamp for light therapy, tryd a few times, but got eveytime so exhausted in brain and eyes that i was in a sleepy state with open eyes. everything with vision costs also so much energy. it is for me not related to migraines. Maybe you wrote about it and i allready forgot. It changes with light, sometimes i can have curtuns open, but now severe, i like them closed for energy.
This sounds very interesteting! I can well imagine there are several connections.
A natural way – without possible side effects – to limit migraine attacks (in both length and frequency) is Vitamin B2 (riboflavin). It is usually prescribed 2 × 200mg per day for migraines. This is a longterm therapy and will require taking your usual meds during pain attacks.
I still suffer from chronic migraines but i do feel the attacks are often shorter and therefor at least one of my many ME/CFS symptoms can be kept in check. Ask any neurologist for further information!
Many thanks Cort for your outstanding and deeply appreciated research on ME/CFS and co.! You are a treasure!
I’m 75, I’ve had migraines since I was 12 – always triggered by hormone fluctuations during cycle. I’ve had ME for 35 years. Perhaps there is a symbiotic connection but I don’t think they are related. That said, my primary debilitating symptom with onset was vertigo and vertigo remains the ‘crash’ reaction if I overdo. My PCP suggested that this and light sensitivity were possibly ‘silent’ migraines. I have recently had some odd visual disturbance cluster migraines. To treat the vertigo, she suggested an old school drug, Phenergan. 25mg at night. In 3 months using this drug I have not only not had vertigo, but I also have slept well for the first time in decades. No worrying, not awake for hours at 3 am, but also not ‘drugged’ out. For me it’s been a huge improvement. The drug is an antihistamine but is often used pre-surgery to calm patients. It reduces my worry, and improves my painful sinuses. It doesn’t affect the fatigue of CFS, but at least I wake up to it having had 8 hrs of relief!
I was so interested to read this, Cort. Prior to my COVID infection in March 2020 and subsequent long COVID and ME/CFS diagnoses, I previously suffered from chronic migraines from 2010-2018. The combination of an elimination diet, getting the Mirena IUD, and starting Aimovig monthly injections all did the trick. I have an amazing headache specialist who stopped at nothing until she finally helped me crack this code. I did not have an increase in migraines with my long COVID like so many others did, but what was curious was when my ME/CFS specialist, Dr. Susan Levine, asked me last year if I had a history of migraines and of endometriosis. Yes to both! She knew there was a connection but I didn’t think to ask her more at the time.
Also, I recently had an uptick in migraines. My IUD had been switched from Mirena to Kyleena, but no good. My periods and migraines came back. My GYN just switched me back to Mirena last week, so fingers crossed. But I’ve also had an increase in cognitive activity (writing) in the last six weeks, so now that part of your article has me wondering if I’m not getting enough oxygen to my brain to support the work.
Allergic skin-reäction to sunlight c. 1971/2 (7-8 y.o.).
Migraines since puberty c. 1975 – usually set off on dark, cloudy days.
PVFS diagnosed 1996 after a « mega-virus » but not EBV.
ME/CFS diagnosed 1998.
IBS diagnosed c. 2000.
FM diagnosed 2008.
I was recently advised by my optometrist that I would naturally be photophobic due to my unnaturally large pupils.
A couple of years back I was prescribed Maxalt/Rizatriptan benzoate. As far as I am concerned, it is a miracle-drug. The medication is usually effective btw 1-2 hours. On four occasions I have had to take second dose. Only once have two doses not helped. I was suffering up to 6/7 days. Currently 1-2/fortnight.
I must say that my PEM crashes feel nothing like coming out of a migraine, rather more like a heavy ‘flu.
I have ME CFS and in the last year I developed light aura migraines. They started happening more frequently over time where instead of once or twice a month, I was getting them once or twice a week. I noticed a pattern with when they were happening which was while I was getting ready in the morning. So I decided to switch out the lightbulbs above my mirror with SMART lightbulbs. I put them on a very low setting and changed the color to an orange hue. That was about 4 months ago and I’ve only had one migraine since then and it was due to a panic attack at night. So, I think I solved my problem for the most part and wanted to share this with you guys in case the information could help anyone else.
Wondering how chemical intolerance to fragrances & other chemicals fits into these new ideas re: migraine causes/functions, especially as olfactory nerve is only nerve that goes directly to brain (limbic system?), and re: energy depletion between migraines–could olfactory nerve be hyper-sensitive under certain inner &/or outer conditions & as in ‘light phobia’/light hypersensitivity–olfactory nerve is experiencing chemical phobia/chemical hyper-sensitivity?
Migraines for me come when exposed to fragrance chemicals, cleaning products, dryer sheets, tide, pine sol, tar, etc., but also when have extended my neck back to look up to get something out of cabinet, or adjust a curtain rod, etc, or when tried to do a physical stretch or movement pattern that requires extending my neck back past a certain point.