Migraine headaches in Chronic Fatigue Syndrome (CFS) (Ravindran et al., 2011)

[Dolphin]

Full text free at: http://www.biomedcentral.com/1471-2377/11/30

Migraine headaches in Chronic Fatigue Syndrome (CFS): Comparison of two prospective cross-sectional studies.

BMC Neurol. 2011 Mar 5;11:30.

Ravindran MK, Zheng Y, Timbol C, Merck SJ, Baraniuk JN.

Division of Rheumatology, Immunology and Allergy, Room 3004F, 3rd Floor PHC Building, Georgetown University, 3800 Reservoir Road, NW, Washington, DC 20007-2197 USA. baraniuj@georgetown.edu.

Abstract
ABSTRACT:

BACKGROUND: Headaches are more frequent in Chronic Fatigue Syndrome (CFS) than healthy control (HC) subjects. The 2004 International Headache Society (IHS) criteria were used to define CFS headache phenotypes.

METHODS: Subjects in Cohort 1 (HC = 368; CFS = 203) completed questionnaires about many diverse symptoms by giving nominal (yes/no) answers. Cohort 2 (HC = 21; CFS = 67) had more focused evaluations. They scored symptom severities on 0 to 4 anchored ordinal scales, and had structured headache evaluations. All subjects had history and physical examinations; assessments for exclusion criteria; questionnaires about CFS related symptoms (0 to 4 scale), Multidimensional Fatigue Inventory (MFI) and Medical Outcome Survey Short Form 36 (MOS SF-36).

RESULTS: Demographics, trends for the number of diffuse "functional" symptoms present, and severity of CFS case designation criteria symptoms were equivalent between CFS subjects in Cohorts 1 and 2. HC had significantly fewer symptoms, lower MFI and higher SF-36 domain scores than CFS in both cohorts. 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. The CFS group had migraine without aura (60%; MO; CFS+MO), with aura (24%; CFS+MA), tension headaches only (12%), or no headaches (4%). Co-morbid tension and migraine headaches were found in 67% of CFS. CFS+MA had higher severity scores than CFS+MO for the sum of scores for poor memory, dizziness, balance, and numbness ("Neuro-construct", p = 0.002) and perceived heart rhythm disturbances, palpitations and noncardiac chest pain ("Cardio-construct"; p = 0.045, t-tests after Bonferroni corrections). CFS+MO subjects had lower pressure-induced pain thresholds (2.36 kg [1.95-2.78; 95% C.I.] n = 40) and a higher prevalence of fibromyalgia (47%; 1990 criteria) compared to HC (5.23 kg [3.95-6.52] n = 20; and 0%, respectively). Sumatriptan was beneficial for 13 out of 14 newly diagnosed CFS migraine subjects.

CONCLUSIONS: CFS subjects had higher prevalences of MO and MA than HC, suggesting that mechanisms of migraine pathogenesis such as central sensitization may contribute to CFS pathophysiology.

CLINICAL TRIAL REGISTRATION: Georgetown University IRB # 2006-481ClinicalTrials.gov NCT00810329.

 

[Dolphin]

Conclusions (I've given each line a paragraph):

Conclusions

CFS subjects have a high prevalence of migraine headaches that may be overlooked and undertreated.

The proportion with an aura was similar to other migraine groups.

CFS+MA was associated with higher severity scores for neural problems such as numbness and dizziness, and alterations of heart beat.

The lower pressure - induced pain thresholds and hyperalgesia found in the CFS+MO subgroup was suggestive of nociceptive hyperresponsiveness and central sensitization.

Appropriate diagnosis and treatment with triptans may be beneficial for CFS subjects and their complex headaches.

 

[Dolphin]

Although I like that they did the study and are interested and it is good that different angles are looked at, I always get a bit nervous about "lumping":

The association of migraine with CFS and FM introduces a new perspective for "functional" somatization disorders. We agree with Wessely et al. [31] who stated that the existence of specific functional somatic syndromes is an artifact of medical specialization and different systems - oriented consensus definitions of these illnesses. This attitude is conveyed by the 2010 FM diagnostic criteria that overlap extensively with CFS, and remove the importance of "tender points" [1,9]. A further stage in the evolution of CFS, FM, irritable bowel syndrome, and other systems - based diagnoses has been proposed by Fink and Schroder with their hypothesis of Bodily Distress Syndrome [32]. A reevaluation of the pathophysiological mechanisms contributing to these seemingly disparate syndromes and individual organic disorders such as migraine may lead to the recognition of common primary pathologic, genetic and environmental diatheses that lead to overlapping and fluctuating patterns of organ - specific complaints.

Saying that, it could be the case that people are being diagnosed with migraine who really have ME/CFS.

I think this happens with lots of symptoms e.g. I was diagnosed with IBS but wish that the gastroenterologist had been on the look out for ME/CFS; similarly, I was given a provisional diagnosis of TMJ - while again, it would have been good if I had been diagnosied with ME/CFS and would have stopped me going downhill.

 

[Dolphin]

I read the pre-publication history: http://www.biomedcentral.com/1471-2377/11/30/prepub
There were more tables in the origin http://www.biomedcentral.com/imedia/6209572234815210_manuscript.pdf which for some reason the reviewers wanted to reduce. Some people may find it easier to use this version with more tables.

In particular, we lost Table 8. "Previous and new diagnosis of migraine (MO + MA) in Cohort 2 CFS subjects (n = 51) and treatments based on headache frequency."

 

[Esther12]

Thanks Dolphin.

I've started getting migraines over the last year. They've often been followed by short vertigo attacks.

It really struck me how my migraines felt like a more severe version of CFS. Unfortunately, it looks like they don't know really understand migraines either! People with severe chronic migraines seem virtually as badly treated as those with CFS.

 

[Dolphin]

Thanks Dolphin.

I've started getting migraines over the last year. They've often been followed by short vertigo attacks.

It really struck me how my migraines felt like a more severe version of CFS. Unfortunately, it looks like they don't know really understand migraines either! People with severe chronic migraines seem virtually as badly treated as those with CFS.

Thanks Esther12.

Sorry to hear about your symptoms.
Vertigo got a fleeting mention:

Vertigo has been associated with migraine as vertiginous migraines, but has not been definitively investigated for a relationship to aura [25,26].

Have you tried Sumatriptan or other triptans?
They found:

Sumatriptan was beneficial for 13 out of 14 newly diagnosed CFS migraine subjects.

 

[Esther12]

Thanks

Have you tried Sumatriptan or other triptans?

I don't take any medication.

I'll have a read of that paper properly before I go to see someone about the migraines, and see what they suggest. My partner uses a triptan nasal spray for migraines and finds it really helpful.

I almost enjoy my migraines... I don't get that much pain, the visual stuff is interesting, and I often feel sedated and weak in quite a pleasing way. After being sober for so long, different manifestations of illness are the closest I get to inebriation.

Irrelevant PS: I spoke to my GP about my migraines and he insisted they were never related to vertigo. He's an okay doctor, and not an arsehole... but it is ridiculous how GPs feel able to make stuff up just to sound authoritative.

 

[Dolphin]

Thanks.
I'm always learning about medicine. My brother has migraine with aura so because I didn't/don't have anything like what he had, I never associated migraine with what I had. Reading this paper made me think that I do get migraines and perhaps occasionally with aura.

 

[Dolphin]

This paper was referenced:

Since 67% of migraine subjects meet CFS criteria [2], we propose that mechanisms of migraine may play roles in CFS pathophysiology.

2.Peres MFP, Zukerman E, Young WB, Silberstein SD: Fatigue in chronic migraine patients. Cephalagia 2002, 22:720-724. Publisher Full Text

Fatigue in Chronic Migraine Patients

MFP Peres1,
E Zukerman2,
WB Young3 and
SD Silberstein4
+ Author Affiliations

1So Paulo Headache Centre
2Albert Einstein Hospital So Paulo, Brazil
3Thomas Jefferson University Hospital Philadelphia
4 Jefferson Headache Center Thomas Jefferson University Hospital Philadelphia, USA
Mario F. P. Peres, So Paulo Headache Centre, Al. Joaquim Eugenio de Lima, 881 cj 708/709, 01403-001 So Paulo, Brazil. Tel. 11 3285-5726, fax 11 3285-1108, e-mail marioperes@yahoo.com

Abstract

Fatigue is a common symptom frequently reported in many disorders including headaches, but little is known about its nature. The objective was to determine the prevalence of fatigue in chronic migraine (CM) patients, to define its subtypes and its relationship with other conditions comorbid with CM. Sixty-three CM patients were analysed. The Fatigue Severity Scale (FSS), the Chalder fatigue scale and the CDC diagnostic criteria for chronic fatigue syndrome (CFS) were used. Fifty-three (84.1%) patients had FSS scores greater than 27. Forty-two (66.7%) patients met the CDC criteria for CFS. Thirty-two patients (50.8%) met the modified CDC criteria (without headache). Beck depression scores correlated with FSS, mental and physical fatigue scores. Trait anxiety scores also correlated with fatigue scales. Women had higher FSS scores than men, P < 0.05. Physical fatigue was associated with fibromyalgia, P < 0.05. Fatigue as a symptom and CFS as a disorder are both common in CM patients. Therapeutic interventions include a graded aerobic exercise program, cognitive behavioural therapy and antidepressants. Identification of fatigue and its subtypes in headache disorders and recognition of headaches in CFS patients has implications for the pathophysiology, diagnosis and treatment of these disorders.

Fatigue chronic daily headache chronic fatigue syndrome migraine

The full text is available for free at: http://cep.sagepub.com/content/22/9/720.full

I have to wonder if this is a representative group of migraine patients.
If "67% of migraine subjects meet CFS criteria" and 12% of the population have migraine (mentioned in the 2011 paper), that would mean 8% of the population have CFS.

 

[meadowlark]

I have had a migraine every single day since 1983. They are hemiplegic (going right down one side of the body) and pure agony. I had slow-onset ME/CFS (am now bedbound), and it wasn't til 2001 that a doctor suggested that the migraines might be a symptom of a larger problem.

Imitrex helps, but makes me sleep 24/7, and stops working after two headaches or so, and I have to put it aside for a month or so. Otherwise, it's either endure the pain or numb it with fiorinal.

To me, the migraine pain is far more debilitating than POTS and post-exertional malaise.

 

[Dolphin]

Very sorry to hear of your situation, meadowlark.

I wrote to Dr. Baraniuk about a couple of numbers which looked in correct saying:

I have found your latest paper, “Migraine headaches in Chronic Fatigue Syndrome (CFS): Comparison of two prospective cross-sectional studies” of personal interest. I have not had a formal investigation of my headaches even though they are debilitating. Amitriptyline has helped dull them a bit and then I am housebound and live in an environment trying to avoid too much light or noise to prevent headaches e.g. I wear a peaked cap to keep out overhead lights, I generally pull down the blinds to avoid reflections (but still get some light), I wear polarised sunglasses a lot of the time. I find I have problems in sunny weather – if I look into the sun or even get a reflection, a few hours later I will get a bad headache. It’s like the light has stabbed my eye if I catch a glare of light. I recall that pupil reflexes can be slow in ME/CFS so that perhaps could be a factor.

 

[Esther12]

@ Dolphin: I think 'chronic migraine' is much rarer than just migraine. It seems like it's often treated quite dismissively too. (When patient's problems become more severe and more of a burden for doctors and society, it's always good to try to make them feel bad about it).

I vaguely remember old psychological papers that claimed migraines and CFS were both the result of a hysterical personality. Over the last twenty years migraines have become seen as more respectable... but maybe not as much as you'd assume - plenty of doctors still seem to see migraines as some form of malingering.

@ meadowlark: Really sorry to hear about your troubles. Pain can be really debilitating, and it's something I'm so grateful not to suffer from. Have you tried any of the drugs dolphin mentioned? They are moving forward with treatments for migraine, so if you have tried everything currently available, hopefully there'll be something more effective soon.

 

[Dolphin]

@ Dolphin: I think 'chronic migraine' is much rarer than just migraine.

Well spotted. That was the group where 67% had CFS. The Ravindran paper doesn't describe them like that in the introduction.

 

[WillowJ]

Migraine and ME/CFS seem to be related in that they both have vascular issues. Particularly interesting is the hole in the heart which corresponds with Cheney's reports (would that he would publish those). There's also Substance P, which would relate to FM.

I got migraine with aura even before ME/CFS, but it got a lot worse with the onset of ME. I think I qualify as chronic migriane (pretty sure I'm diagnosed with that). I do not get tons of pain, but many kinds of aura. I sometimes think I experience some of my pain as dizziness. (Disclaimer since this is the world wide web: this is personal information and is not to be used elsewhere or for other reasons than to directly benefit ME/CFS patients and their families.)

http://www.msnbc.msn.com/id/29288759/

But for those who get migraines, the rules appear to be different. Until recently, scientists saw migraine suffering as a physiological thunderstorm that left few lasting effects. But new research suggests some migraines aren’t so innocuous.

Recent studies show those who suffer from something called migraine with aura have double, or perhaps triple, the risk of stroke or heart attack, compared with people who don’t get migraines at all.

“I don’t think migraine is seen as a serious disorder. That’s a mistake,” says migraine researcher David Dodick, a neurologist at the Mayo Clinic in Phoenix. “Headache is just one manifestation of migraine. It’s a systemic illness.”

Some researchers blame migraines on chronic exposure to certain neurotransmitters. Most scientists think migraine sufferers’ brains are hyper-excitable — that is, their neurons tend to start firing uncontrollably, with the outburst spreading across the brain over the course of a few hours.

This electrical storm causes the brain to release several neurotransmitters, including two chemicals called Substance P and Calcitonin Gene-Related Peptide (CGRP), that produce inflammation and pain in the blood vessels surrounding our brains.

But another group of scientists think the culprit isn’t neurotransmitters, but the vascular system itself. Dodick and others argue that the blood vessels of people who get migraines are inherently dysfunctional, contracting and expanding abnormally in reaction to physical and emotional stress.

Then there’s the hole-in-the-heart theory. Researchers have known for years that having a gap in the wall between two chambers of the heart — a surprisingly common defect (it occurs in 10 to 20 percent of people) — increases the risk of stroke.... It’s not clear why: The defect, known as a patent foramen ovale, or PFO, may allow blood to bypass the lungs, which constantly filter small clots and impurities from the blood. These clots may end up lodged in veins and arteries in the head, triggering strokes.

Over the past five years, scientists have found that PFOs seem to occur in more than half of people who get migraines. In some migraine patients, closing the PFO with surgery seems to lead to a disappearance of headaches.

Some researchers suspect the unpurified blood leaking through the PFO contains inflammatory molecules, which set off that electrical storm when they travel up to the brain

But none of these hypotheses have been proven, and the links between migraine and cardiovascular disease remain murky.

At the same time, he says, even those who get frequent migraines shouldn’t panic. ...
“A doubling of risk sounds scary, but in absolute terms, it’s still low,” says Dr. Stephen Silberstein, a migraine specialist at the Jefferson Headache Center in Philadelphia.

Even without a clear causal link, the new findings may change how doctors treat migraines. Rather than seeing the condition as a painful but harmless hassle, doctors are increasingly trying to prevent it, just as they do obesity or high blood pressure

“I think there’s ongoing, progressive damage to the cardiovascular system,” she says. “If you can treat patients early on, maybe you can keep it from progressing.”

Dodick agrees. “The evidence points in that direction,” he says. “So it makes good sense to be aggressive with preventive measures.” He notes that only 15 percent of people who get frequent migraines take preventive medicine.

 

[meadowlark]

esther: Yes, I've been on all the drugs mentioned, as well as anti-seizure meds, which seems to help some people. They don't help my migraines--or my seizures, ironically. Another problem is that these drugs are not paid for by my government disability plan. Of course, it's not healthy to take drugs every day, so maybe this is reality's way of taking care of that.

Daily migraine is often dismissed as "rebound headache" if you take anti-migraine drugs regularly, so I've gone six months without drugs for two different neurologists. They simply didn't believe me when the migraines persisted at the same frequency and intensity. They also didn't believe that a high fever made the migraine disappear, and that a lower fever lessened it. But that's how it works for me, rock-paper-scissors style. I have a list of symptoms that dominate or cancel each other out in different combinations.

It interested me that when my ME/CFS reached its present stage, I found that to some degree I could change the location of the hemiplegic migraine through my posture. Nothing helps the head pain, but the sensation of a limb being stabbed -- or roasted on a spit -- can change if I prop that limb up on the wall, on a stack of pillows, etc. (Of course, the pain gets worse elsewhere to compensate.)

In addition, dazzling summer sunlight gives me vertigo and seizures, even when wearing dark sunglasses. I once took no migraine drugs for a month to make sure they weren't involved in this, went outside in dark glasses on a cloudless day, and had vertigo and the "first stage" visual display of a seizure within fifteen minutes. I immediately went back indoors and pulled my black-out curtains.

It's a strange life for all of us.

Thank you, everyone, for all the info!

 

[WillowJ]

I'm sorry the neuros are so stubborn. I hope you can get some help. It is a strange life indeed.

they'd have a hard time saying I had rebound headaches because I had no treatments of any kind until very recently. antizeizure medicines do help for some kinds of triggers (vibrational, noise) but not as much for others (light especially).

how do you differentiate between a complex migraine and a seizure? Or do you get tonic seizures? I suspect some of my "migraines" are partial seizures (and even my [now-fired] your-problems-are-all-"functional" GP thought so) but the neurologist said no just from glancing at my list of symptoms and triggers (since many migraine and seizure triggers are the same, I don't know what that told him? how is flashing lights a trigger for migraine but not seizure?)

however, I cannot now get a neuro because of my CFS diagnosis. No one wants me. So my GP has to manage my seizure meds, which is not ideal because she is not trained to do this. I almost miss my bad-faith HMO. Or at least the neuro from there who coudn't effectively treat my ME/CFS, but believed it was real.

 

[Wayne]

Headaches and Oral Infections

I started a thread recently entitled:

Headaches and Oral Infections

In it, I shared a story my doctor recently related to me about chronic headaches and oral infections. Don't know if it would fit in the category of migraine however.

Wayne

 

[meadowlark]

how do you differentiate between a complex migraine and a seizure? Or do you get tonic seizures? I suspect some of my "migraines" are partial seizures (and even my [now-fired] your-problems-are-all-"functional" GP thought so) but the neurologist said no just from glancing at my list of symptoms and triggers (since many migraine and seizure triggers are the same, I don't know what that told him? how is flashing lights a trigger for migraine but not seizure?)

however, I cannot now get a neuro because of my CFS diagnosis. No one wants me. So my GP has to manage my seizure meds, which is not ideal because she is not trained to do this. I almost miss my bad-faith HMO. Or at least the neuro from there who coudn't effectively treat my ME/CFS, but believed it was real.

Hi Willow -- I'm so sorry you have both migraine and seizure. They are waking nightmares.

Because I have brain fog I can't give you the name of my particular seizure, but I never had them til I developed full-blown ME/CFS. They start with a specific visual experience that is different from migraine. The three dimensions of the world flatten entirely; buildings a block up the street seem to be right in front of me, and fight in my vision with what actually is that close. Of course, it is impossible to walk through space when your brain refuses to believe that there's a dimension to walk into. So instead, I get vertigo and my brain checks out, giving me a "diving bell and the butterfly" light display while I'm unconscious. This is by-the-book for this kind of seizure. I don't get migraine aura often, but when I do it is very different ... I see stars and teardrops, holes in the vision, etc. This is also by-the-book, as you know.

As for triggers, I got migraines in my early teens, triggered by swift changes in the weather. Now that I get a CFS-related migraine, it is still much worse during a weather change. This means that the autumn and spring are bad seasons.

I know many people whose migraines are triggered by fluorescent light, flashing light, the light leaking from the Xerox machine, light through venetian blinds .... these tend to bother me after the migraine has kicked in. They don't start it. But the way light affects the brain is a weird overlap between migraine and seizure.

I am in Canada, so I never had an HMO. Government health insurance paid for both neurologists. I saw one for migraine. I was diagnosed with ME/CFS in 2001 (with as good a diagnosis as you could get in Canada then, by an HIV specialist who headed the infectious diseases unit at a hospital), but the first neurologist simply dismissed the diagnosis, saying "oh, I don't know anything about that stuff." He had one protocol, and if it didn't work for you, he just struck you off his list. He thought I had a lot of fairy tale beliefs about what was happening to me.

Another neurologist saw me for seizures. My ME/CFS diagnosis didn't bother it because he simply discounted it. He tested me for epilepsy (don't have it) and put me on many anti-seizure meds (which I'd also tried for migraine). Nothing worked--and then the neurologist retired. At the same time I became 90% bedbound, so right now treatment is on hold. It's hard enough just getting to the family doctor. In the meantime what works best for me is just avoiding the outdoors when the sun is high and there are no clouds. And on the rare occasion that I'm outside, I stay very close to home and turn back at the slightest whisper of seizure.

@ Wayne: I read your post when you first wrote it. It was fascinating. When I read it, and the other thread on teeth infection, the song "the hip bone's connected to the thigh bone, the thigh bone's connected to the knee bone," etc., kept running through my head. Nothing happens in isolation.

 

[WillowJ]

very interesting, Meadowlark. thanks for sharing all that. I don't know whether I have seizures; sorry if I wasn't clear. My seizure med is to treat migraine.

I do not loose consciousness, but I do get altered consciousness. My perception changes, and/or my muscle sense (knowledge of where my limbs and head are and what size they are) is altered or absent. I have had partial or total blackouts without fully losing consciousness. Since I have more complex migraine ( like that news anchor they thought was having a stroke while on air) which can come with more types of aura than the classic seeing lights and dark spots (although I can get those, too) it's more difficult for me to decide, you know maybe it is all migraine... or maybe there isn't that much difference between complex migraine and partial seizure. They really haven't studied migraine aura that well (it's a women's disease, you know).

I'm sorry you are bedbound and find it hard to get to the doctor. Avoiding the outdoors has to be rough, too. I always make sure to keep sunglasses near if there's any chance of sun. But I'm pretty well-positioned geographically to take advantage of cloudy skies.
T-storms and other air pressure changes are hard for me, too.

I hope you get better and are able to get some help for your seizures again.