Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 19, 2011.
Full text free at: http://www.biomedcentral.com/1471-2377/11/30
Conclusions (I've given each line a paragraph):
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":
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.
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."
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.
Sorry to hear about your symptoms.
Vertigo got a fleeting mention:
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.
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.
This paper was referenced:
2.Peres MFP, Zukerman E, Young WB, Silberstein SD: Fatigue in chronic migraine patients. Cephalagia 2002, 22:720-724. Publisher Full Text
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.
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.
Very sorry to hear of your situation, meadowlark.
I wrote to Dr. Baraniuk about a couple of numbers which looked in correct saying:
@ 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.
Well spotted. That was the group where 67% had CFS. The Ravindran paper doesn't describe them like that in the introduction.
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.)
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!
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.
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.
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.
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.
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