Migraine treatments

30 Nov 2017 | BBC: Migraine therapy that cut attacks hailed as 'huge deal' [antibody treatment]

Interesting to those of us who get migraines:

Read the rest: http://www.bbc.co.uk/news/health-42154668

 

The study was published in the NEJM but it's paywalled.

Source: http://www.nejm.org/doi/full/10.1056/NEJMoa1705848

 

I got sent this video summary via @Simon M

http://www.nejm.org/do/10.1056/NEJMdo005225/full/?query=featured_mhome

 

Merged thread

FDA just approved the first drug to prevent migraines. Here’s the story of its discovery—and its limitations

http://www.sciencemag.org/news/2018/05/will-antibodies-finally-put-end-migraines?utm

 

Great news! Hopefully this proves to be the major breakthru that many neurologists think it is and that the people who need it are able to access it. I forsee insurance making it a difficult drug to get covered given the high cost.

 

Would this help things like light sensitivity in ME, perhaps? I'd be curious to know.

 

I'm very pissed off with these hyped up announcements. The competing companies have massaged their findings and share "facts" which are underwhelming to me as a chronic migraine sufferer. Their "success rates" are barely above placebo!

The stories of complete remission trumpeted in the press are singularities.

There are no long term studies. Nothing past 6 months. I'm concerned about the long term effect of blocking CGRP.

This from the article above:

"DESPITE SUCH ANECDOTAL SUCCESSES, some migraine researchers don’t think it’s time to celebrate yet. If CGRP “really is a fundamental mechanism, you would expect a much higher proportion of patients to be completely free of attacks,” Ferrari says. Safety also concerns him because of CGRP’s natural role in dilating arteries and maintaining blood supply to the heart and brain. “Theoretically, if you block CGRP you could translate a minor stroke or cardiac ischemia … into a full blown stroke or heart attack,” he says. So far, the companies say they haven’t seen that or other significant side effects in the several thousand people who have completed phase I and II trials, but the drugs have only been administered for up to 6 months—not long enough to judge long-term effects, Bigal says."

From neurologist Robert P. Cowan, MD, FAAN
"CGRP is found throughout the body, and in addition to modulating pain, it has anti-inflammatory action and a role in energy metabolism, among other functions, and the risks compound. The list of drugs found to be unsafe following release is long and includes medications such as Vioxx, Accutane, Cylert, Permax, and Propulsid, to name a few. The risks associated with these drugs did not come to light until a wider distribution revealed them. Without a major restructuring of drug trial design or wider and more sophisticated use of computer modeling, it is impossible to predict these unforeseen outcomes. However, the effect of circulating antibodies in patients with unanticipated breakdown of the blood–brain barrier due to injury or stroke and the effect on healing in patients with circulating antibodies and cardiac events or inflammatory disease remains unknown."

http://practicalneurology.com/2018/...raine-landscape-look-like-post-cgrp&center=39

EDIT: I put energy metabolism in bold. Yeah, not gonna risk it.

 

I imagine those who have VERY chronic treatment resistant migraines will be more than willing to take the risk of the unknown long-term risks, and will jump at the chance to try this medication.

There are ME patients who are willing to try treatments for which the risks are not completely known.

I choose to take medications that may cause me serious health issues in the future because as this point I care about quality not quantity.

 

Good points @Squeezy
My take away is that it could be useful for some, but it's far to early for me to want my daughter trying it. In a decade the knowledge of the risks will be clearer.

 

Yes definitely. Me too. If my migraines were treatment resistant I'd jump at it. The pain is excruciating. I'd rather have bamboo pushed under my nails than have another 3 day torture migraine. Not joking.

But from the info above, I think these CGRP drugs might pose more than a future health risk. For those who have health problems they could be a very present danger. The manufactures just don't know. Or care. Which is alarming. It's just been a race between the pharmaceutical companies to get their product out first.

I'd like these, and other new medications, to have to be prescribed with BIG warnings that they've only been tested in people who are healthy aside from that single condition. That they only know the effects on the body of this med for a term of 6 months. And have no idea how it will affect those with auto immune diseases, heart conditions, asthma...

CGRP receptors are also found in your kidneys, pancreas, adrenal glands, and bones, and it’s not clear how the drugs will affect them after long-term use.

 

@Skycloud I'm sorry that your daughter is cursed with these bloody things too. Have we talked about what she's tried? My memory is rubbish. I don't know if it's the Topomax - miracle daily migraine preventer for me, but AKA Dopomax. I'm dopey to da max. Or if it's the ME.

 

Merged thread

Can migraines be untangled by new medical thinking?

https://www.msn.com/en-gb/news/ukne...al-thinking/ar-AAPjtmB?ocid=ASUDHP&li=AAnZ9Ug

Unable to quote at the moment, but it appears to have some interesting parallels with ME.

 

I've seen Goadsby on TV talking about the awful sexism that has led to the neglect of migraines. Very impressive.

 

Interesting 2016 article in National Geographic with Hubert Airy’s original sketches:

https://www.nationalgeographic.com/...-century-doctor-who-mapped-his-hallucinations

The 19th Century Doctor Who Mapped His Hallucinations
BYGREG MILLER
PUBLISHED JUNE 13, 2016
• 7 MIN READ

Hubert Airy first became aware of his affliction in the fall of 1854, when he noticed a small blind spot interfering with his ability to read. “At first it looked just like the spot which you see after having looked at the sun or some bright object,” he later wrote. But the blind spot was growing, its edges taking on a zigzag shape that reminded Airy of the bastions of a fortified medieval town. Only, they were gorgeously colored. And they were moving...


Also:

https://journals.lww.com/jneuro-oph...s__Morbid_Affection_of_the_Eyesight__.24.aspx

2014 Sep;34(3):311-4.
Dr. Airy's "morbid affection of the eyesight": lessons from Teichopsia Circa 1870
Frederick E Lepore 1
Affiliations PMID: 2484002
DOI: 10.1097/WNO.0000000000000133

 

Wow Airy's picture is exactly like my migraine aura! That spreading out from a spot in the centre into a crescent.... eventually over about 30mins it opens up & then gets so wide it eventually disappears... which is when the vomiting starts.

 

Yes, just like mine, too, though I have had them very rarely, and having worked out what triggers mine, it's been several years, now, since I've had another.

 

That sounds like hell. I remember a couple of female classmates having migraines too, my school at the time luckily just sent them home to recover. None of that pull yourself up by the bootstraps bullshit luckily. But still sounds awful to have, sorry you and others have to go through that.

 

Merged thread

New York Times article 2022 about migraine: For Decades, He Had Strange Episodes of Utter Exhaustion

If not exercising could affect the frequency of these spells, so could exercising too hard. After a really long run, there was a good chance he would end up in bed the next day. Because of that, he thought for a while that he might have chronic fatigue syndrome, which is also known as systemic exertion intolerance disease (S.E.I.D.). But he usually recovered within 24 hours, and that wasn’t true for those with S.E.I.D.

Part of a Bigger Picture

The patient was able to have his first video visit with a headache specialist two weeks later. He described his symptoms and the timeline. It starts off with a feeling of malaise, he said — as if he were coming down with something. Then after half an hour, stiffness arrives in his neck and shoulders, sometimes even his jaw. Another half-hour later, the weakness kicks in and he has trouble even sitting up. But he didn’t get headaches and hadn’t for decades.

The specialist had been seeing migraine patients for more than 30 years and knew that migraines came in many shapes and sizes. What the patient described wasn’t an aura: It lasted far too long. It was as if he had a long episode of the preliminary symptoms but never quite got the headache. Moreover, he had a history of migraine headaches and, over time, a patient’s migraines can change so that they have many of the symptoms but not the headache. Indeed, experts in the field no longer call the disorder migraine headaches but rather migraine disease, because the headache is only a part of the bigger picture. And the way these debilitating symptoms came out of nowhere and then resolved completely was consistent with migraine disease.

There are no tests for migraine — it is a diagnosis made based on the patient’s story. The story this patient was telling didn’t make the diagnosis certain, but it was possible. To test the diagnosis, the headache specialist suggested that they try treating the episodes with medications that can stop a migraine from progressing. A new medication, approved by the F.D.A. just over a year earlier, called ubrogepant or Ubrelvy, had been effective for many. The drug blocks a protein that promotes the inflammation in the brain that is thought to initiate the process that produces migraines. When taken at the very start of the symptoms, it can stop the episode in its tracks. The patient needed no persuading. Anything that might free him from the unpredictable tyranny of these spells was worth trying.

The medication was life changing, the patient told the specialist at their next appointment. He took it when the stiffness was first starting to set in, and within a couple of hours, it was gone completely.

For decades the presence of the typical headache was the defining quality of migraines. Experts like the one who saw this patient now recognize that migraines can change over time so that sometimes they aren’t even headaches anymore.

https://www.nytimes.com/2022/03/31/...aine-diagnosis.html?smtyp=cur&smid=tw-nytimes