New drug offers hope to those with severe migraines
nytimes.com
nytimes.com
As the article mentions, there’s a risk around toxicity. The approved distribution, dosage, and delivery seems to be an entirely different process from 15+ years ago, so here’s to the best. But, there’s really not a single measurement of residual peptide buildup throughout the entire study.
I worry about long term buildup of proinflammatory mediators that could eventually strike back fast and hard with long term ocular nerve damage; a similar effect as the earlier drug iterations of a higher toxicity.
1. If I don't eat sugar my migraine incidence goes from 8-12/month to ~1/month.
2. Excedrin works for me every time. The longer I wait to take it the longer it takes to work though. If I take it as soon as I feel a migraine coming on it will never progress to a painful stage. Before I discovered Excedrin I would have to go to sleep to end it, and occasionally throw up from the pain.
Note: My doctor said that Excedrin is a "perfect" drug for drug companies because caffeine is a trigger for many people, so they will take Excedrin and it will work, but then the caffeine will cause them to have another headache tomorrow and need it again. This doesn't happen to me though.
About sugar, I tend to agree. My mornings greatly improved after I cut out "part of a healthy breakfast" orange juice.
I think that this is rather about people for whom lack of caffeine is a headache trigger. I.e. a withdrawal symptom because they are used to caffeine.
Of course a caffeine-loaded painkiller will just delay the withdrawal.
Now I'm at the point where doctors are telling me to avoid pain relief pills so four days out of seven are usually just shit. Makes life harder then it should be.
I suspect it's tolerance and not addiction, but docs see this and code it as "medication overuse headache" all the time.
With enough organic chem experience, pronouncing and grokking structure from a name becomes second nature.
In my head it immediately becomes chopped up into understandable units: "di phenyl methyl sulfinyl acetamide"
https://en.wikipedia.org/wiki/IUPAC_nomenclature_of_organic_...
IUPAC is a standards body; that is their nomenclature.
From an IUPAC name, you can work out the molecular structure but IUPAC names are often longer than older names for the same compounds.
For years I went through the roundabout of doctors offering treatments that didn't really help (Botox) or give unhelpful advice ("just avoid triggers"). It wasn't a problem before this, dammit. I eventually dropped out of school, stopped using computers for days at a time and spent over 95% of my time for over 5 years sleeping being very depressed and suicidal.
It got to the point where my eyesight was degenerative and my doctor suggested I try topiramate (risk of optic nerve damage and my eyesight was already bad and getting worse by the day). I tried valproic acid and it made my vision blurry for a week, but I recovered upon stopping the drug.
In early 2017 I got a medical cannabis prescription from a doctor who acknowledged that other treatments didn't work for me and it made an immediate difference. I don't really get migraines anymore and I'm a much happier person in general whose started going to university and I've made some hilarious stoner friends as a result, so that's funny too. What's odd is my eyesight has improved to the point where I don't need as strong as a glasses prescription. The glasses I got last December are now too strong for me so I am happy about that. I'm still not 100% yet, but even a year and a half in I'm still "recovering" from everyday migraines for over half a decade.
I'm blessed to live in Canada and not a place where medical cannabis is illegal. Even in legal US states (Washington, Colorado, et al) there is still the hypocrisy of the federal government acknowledging that cannabis has medical benefits, while still causing vexing legal problems for users.
Be well everyone. Feel free to ask any questions.
[0]: http://sci-hub.tw/10.1111/head.12792 [1]: https://www.newscientist.com/article/2101015-does-eating-mor...
> Our analysis population was 8819 adults in the 1999–2004 National Health and Nutrition Examination Survey (NHANES) with reliable data on diet and headache history.
Compare that to Aimovig:
> The 12-week trial, presented this week at the annual meeting of the American Academy of Neurology, involved 246 patients suffering four to 14 migraine headaches a month who had tried two to four preventive treatments that either did not work for them or had intolerable side effects. [0]
[0]: https://www.reuters.com/article/us-amgen-migraines-aimovig/a...
As to the results of the salt intake survey (Pogoda et al.), it is describing a correlation, not a causation. The actual relationship between salt intake and migraines could also be inverted, or completely independent.
1. the brain is complicated and we don't know much about it 2. anything can trigger migraines 3. sometimes a trigger is not a trigger, but an ailment 4. some things may or may not cure migraines 5. life is full of hardships and hardships are not good for headaches
I have such a wonderful list of diagnosis that if it wouldn't be about the pain, I'd laugh my ass off about it.
Ah, I remember seeing the CGRP acronym all over this paper:
https://open.library.ubc.ca/cIRcle/collections/ubctheses/24/... (The role of monosodium glutamate in headache, [2013])
"Glutamate can induce vasodilation by several different mechanisms. The excitatory neurotransmitter can activate sensory fibres, which results in the release of the potent vasodilatior CGRP (Messlinger et al. 1995)." [1.9.6]
when I was younger I experimented to find the migraine trigger, we suspected msg quite quickly by checking all the ingredients (back before it was masked by just calling it 'natural flavour' or boullion) I usually happens 1-2 days after ingesting it as an ingredient.
It's a tour de force. A nice highlight in the paper is when she explains how she thinned the skull bones of rats, in order to directly observe the change in flow in brain blood vessels caused by glutamate, without the disruption of actually drilling through the bone. A real life Amy Farrah Fowler, man! :)
Most of the prior MSG research was largely conducted by shills hired to defend the food industry. They made serious mistakes like: instead of randomly sampling, specifically recruiting people with self-reported sensitivities: that's a good way to gather a motley crue of tin-foil-hat hypochondriacs. If you recruit that way, then for every person with an actual sensitivity, you will get 100 others who just feed on mass hysterias. And those people will predictably claim that they have a headache from a placebo. It's a ploy designed to lump the real sufferers into the same group as a bunch of flakes and make them the object of ridicule. Another pattern is the blatant dismissal of edge results. Oh, only 3 more people had headaches on the real thing than the placebo out of a whopping hundred. That's just noise! Yes, fuck the several people who are actually sensitive to CGRP and/or have that genetic feature that makes them slow to clear glutamate (discussed above paper).
Visual auras, trouble speaking and actually understanding native language as if intoxicated or suffering dementia, finger numbness, loss of fine motor control... all clear signs//symptoms for me.
Thankfully I've been able to mitigate triggering variables for myself. Apparently my father has not; his situation is worse than mine and I hope this drug offers some options.
https://jamanetwork.com/data/Journals/JAMA/937048/joi180039t... https://jamanetwork.com/journals/jama/fullarticle/2681193
For me it's Monosodium Glutamate and Aspartame that give me migraines, they are also 2 different kinds of migraine.
The aspartame migraines happens after drinking a LOT of diet soda, I don't do think diet soda anymore.
Simply eliminating these from my diet has helped cut down migraines from 2-3/month to 1 in 3 months
Then afterwards you can find an ingredient you might think is the culprit.
The ingredient may also take a few days to affect you, so you have to allow for that.
This might be my case ( whole I think I'm lucky enough that it is not a real big issue.) I remember drinking despados ( some kind of tequila and beer drink.) And having a huge headache the day after. And getting them once in a while. I connected it somehow to the beer and stopped drinking it.
That might be the cause... I need to keep an eye on that. Thanks for the tip :)
As a result, drugs with very few side effects will still have a list of "this drug may cause" that aren't drug related at all.
However, the FDA still requires those to be listed. In such lists you often see contradictory side effects like constipation and diarrhea, sleepiness and nervousness and non-specific complaints.
Dug around and found that this is a commonly reported side benefit of a ketogenic diet.
Sounds off the wall until you realize Keto diets were originally used for managing childhood epilepsy.
Injections are nothing compared to two failed neurostimulators. Yeah, it's a niche drug, but there's plenty of space for those.
LSD doesn't "cure" migraines, there will never be a trial. It will stop migraines, but so will triptans, and you know, without the side-effect of wiggin' nuts.
Oddly, along with three prophylactic meds, I seem to be able to abort migraines with 1/4 tsp ginger powder dissolved in a cup of water. I doubt the ginger would help without everything else though.
The worst part: you pretty much have to pay a $1000 tax if you present at the ER with a migraine, because they will not believe you. People will be in a rush, they will not examine the giant history in the EHR spanning years and years, and you will be likely be suspected of drug seeking. So you have to say yes. $250 for a useless injection of sumatriptan and $750 for an hour of continuing to lie in pain on a bed until they hopefully realize you're telling the truth.
I have taken intranasal capsaicin to try to stop the pain because a paper on the internet said it might work. It didn't even hurt. I'll repeat that: I snorted the active ingredient in habaneros and pepper spray and didn't even feel it because it was so far overshadowed by the pain in my skull.
It really has helped me live my life much more fully. Migraines are truly awful.
That said, I haven't had been hit with migraine symptoms for two years. If you're living with this condition and treatment for it has failed, I strongly recommend changing doctors, and if you haven't gone beyond your GP, do yourself a favor and go to a practice that specializes in headaches. There are more than a few older, lesser-known medicines that successfully treat migraine off-label. In my case, it's a low dose of Depakote[2] -- which is available in generic form. Outside of my deductible, it's under a buck a month, inside it, it's under $10. When it was prescribed to me, there were no references on any of the typical places (WebMD, drugs, et. al) about it being used to treat Migraine. But when I searched on the medication, there were plenty of anecdotal reports from patients stating that the medication -- which was prescribed for bipolar, usually (another off-label use, it's an old medication that was originally prescribed for seizures) -- had resulted in elimination of migraine or a dramatic reduction in the pain[3]. When I last looked, the major sites had it listed as an off-label use. The best part about the medication (well, other than it working) for me is that my body responds very well to it -- I've had nothing in the way of negative side-effects, though there were a few, surprising, positive ones.
Anything dealing with the brain is tricky -- the medications, including the one I'm taking, have odd and downright scary side-effects. And there's usually a page full of them. The cause of migraine isn't particularly understood, either. Considering how different symptoms are for this affliction among those who have it, it wouldn't surprise me if it's found out to be a large collection of different maladies one day.
[0] Well, for me, they certainly were bad headaches, too.
[1] Sensitivity is the best word - with light, it was anything bright and cold, but with sound it didn't have to be loud. The worst pain would come from nearly any noise emanating from a mobile phone or tablet speaker at any volume level. It would electrify the pain in my head.
[2] Which, it turns out, might have additional benefits: https://www.nytimes.com/2016/10/09/opinion/return-to-the-tee...
[3] I'd consider it "eliminated" in me. I get them extremely rarely, and when I do, I can't entirely be sure it's even migraine based on the symptoms ... I still have sensitivities to light/sound but instead of it feeling like the pain was turned up well past 11, I just feel a sort of pressure/head-annoyance that's difficult to describe. Honestly, I'd rather deal with that every day than get a migraine headache even once in a year and I joke (without laughing) that I haven't had one in so long that if I got one, I'd probably have to lay in bed for 3 days. It's been a few years now, though, so my concern about that happening is diminished quite a bit.
A lot of docs don't think about using them, because they are cheap, generic and therefore not advertised :)
They shouldn't be taken regularly, they can have nasty side effects if taken regularly, but they are a great drug to use even up to once every week or two weeks to treat an acute severe migraine attack I.e. "rescue medication". Btw, if the migraines are this regular, you should also see a specialist to consider some preventive medication)
My own migraines are pretty mild, but I work as an ER doc, regularly treating patients with migraines that didn't respond to other meds at home.
My body also has a really bad time with anything that messes with serotonin -- I can't take SSRIs (these are sometimes prescribed for Migraine, but usually as a last resort), I can't take triptans (IANAD, but if I understand it correctly, they're mode of operation is to boost serotonin levels[0]). I've had absolutely no issues on Depokote. The one side effect that it has for me was reducing my anxiety. The crazy thing was that I would have never identified as someone with an anxiety problem, but once I the medicine started working, I noticed that my general outlook on life was a lot more 'calm'.
[0] Or the specific triptan I was on did that as a side-effect ... I discovered this difficulty of mine as a result of getting serotonin shock/syndrom. That was fun!
These two sentences contradict each other. If you never had to consider taking a preventative for your migraines, then no, you do not know how bad they can be. Migraines are much more than just "ow my head hurts today, I should take the day easy". For some, they are debilitating to the point of sometimes making it impossible to do basic tasks like washing the dishes, reading, or sometimes even watching TV. Sometimes during a migraine you literally cannot do anything other than sit in darkness and wallow in misery, hoping that maybe it will ease up for long enough for you to fall asleep. Any kind of professional work is out of the question during a migraine.
Not getting a migraine while at work isn't uncommon, as sometimes having something to focus on (like work) can help stave off whatever triggers the migraines. Migraines also aren't something that just suddenly happens; people who suffer from chronic migraines often get warning signs that one is coming on 12-24 hours in advance, and they can take just as long to develop as well. If someone was already at work, it's unlikely that a migraine would progress to the point of being debilitating before the workday was over. This is probably why your coworkers usually call in sick, but never leave in the middle of the workday. They typically will know before the workday even begins if it will be a migraine-filled day or not.
Chronic migraines can lead to depression, which can cause a downward spiral of deteriorating health/diet, which can in turn cause more migraines, and more depression. Often time migraines can lead to thoughts of suicide because of how badly it hurts, and how badly it impacts life as a whole.
I understand it's frustrating if your coworkers bail often, and shame on them if they are faking their "migraines" and just using it as an excuse. But as someone who has an SO who suffers from severe migraines 15-20 days per month, and still forces herself to go to work most days even through severe, debilitating pain and depression precisely because she has coworkers with judgmental attitudes like yours, I find your analysis insulting.
My migraines have robbed me of pretty much any really stellar life I could have achieved. Undergrad was very tough because of the preventative meds I took. I straight up couldn’t finish grad school and in large part due to the migraines. Yes, I know I could probably have put up some academic fight. But this is also at a point where I had essentially no healthcare and no income. It’s done similar destruction to any social networking desires I may have. I could go on.
As for frequency, without meds I’m basically getting one every day. With meds, I get some days free of pain per week.
That is just as judgemental. I get a mix of migraines and cluster headache every now and then. The pain is always concentrated at a specific point behind my right eye, and I can feel it coming hours before it turns bad. Usually I can stop it with something as simple as paracetamol if taken at the first sign. When I fail to do that it progresses to the point where I have to lay completely still with my eyes closed, or I'll empty the content of my stomach right then and there.
But I've never considered any significant medication.
The reason I ask: the pain from cluster headaches is legendarily terrible. The pain has been described as "remarkably greater" than migraine, and probably _at least_ on par with a spinal headache.
I don't have cluster headaches, but I've had a (diagnosed) week-long spinal headache exactly once before. A spinal headache is where your CSF fluid leaks out your back and your brain physically begins to "hang" in your skull. It lasted for a week, I was shot full of so much hydromorphone I couldn't physically coordinate my legs, and I was still in tears from the pain, begging doctors to knock me out. I honestly think I would have died by my own hands had it gone on for another week. It was unbearable.
I would suggest that the odds of someone managing cluster headache without medication – i.e. the headache that's earned the nickname "suicide headache" and causes people to carry around emergency inhalers of hardcore pain killers like butorphanol – is very, very low.
I had a couple of minor surgeries and some were in full anastesia, some with spinal injection only. Once the nurse said that I may experience headaches and I thought, heck, I know a thing or two about headaches, but noone ever told me how fucking painful it is going to be.
It lasted for two days and the only good thing was that I did not vomit and had no tunnel vision, but the pain reached an astonishing level.
Mine ended up never self-resolving and they had to use a blood injection to produce a clot and "plug" the hole. Before that they tried IV caffeine – apparently that not only exists, but is actually indicated for spinal headaches. Trip report: meh, drinking coffee is much more fun.
> I would suggest that the odds of someone managing cluster headache without medication
Do you find it hard to believe that I, as a person that has managed this particular condition my entire life, is able to tune out the pain as long as I'm completely still and have my eyes closed? I was 30 before it even occurred to me that it was not what other people calls a headache, and I would feel guilty not doing anything with a headache, because people around me constantly said "I have a headache" but acted like nothing was wrong.
Quite frankly, yes. I don't mean to belittle your condition or be a gatekeeper, but cluster headaches and severe migraines can be so bad that you are physically incapable of doing anything but laying still. It's not a choice. It's not just "knife in my eye, I should lay down and try to tune it out", it's "firecrackers are constantly exploding inside my skull and it's affecting my cognitive functions so much that I cannot walk straight, I cannot speak clearly, I cannot see things two feet in front of me, I cannot chew, etc". And it is simply impossible to "tune out the pain".
I don't doubt that you've had some bad headaches and I'm sorry that they have negatively impacted your life, but again, if you've never considered heavy medication for them then no, you do not know the full extent of how bad they can be. You should be thankful for this, not belittling other people's experience with them by implying they can "just take a paracetamol and tune out the pain". The fact that you are able to take paracetamol and that's enough is testament to the fact that you experience less severe migraines/headaches than some others do. A single, severe cluster headache/migraine the likes of which some people get would have sent you to the ER immediately begging for any medication to ensure that such a headache never, ever, ever happened again in your entire life. These are the types of headaches that paracetamol has no chance of even touching. Only incredibly powerful opiods/barbiturates even have a chance of relieving them. And that's just talking about the acute pain. The other terrible part about migraines is their chronicity.
I realize that my entire comment is ridiculous because it's essentially saying "no, my headache is worse than yours!" But saying "well I have headaches too and I'm fine" (like you are doing) is just as stupid.
>and I would feel guilty not doing anything with a headache, because people around me constantly said "I have a headache" but acted like nothing was wrong.
This is essentially what your comment is doing right now, and that's why it's insulting.
It's possible OP has a more mild presentation or something, but what was described is pretty damned atypical – and also about a half-micron away from "I can, so why can't you?".
That was not at all the intention! I've developed a way to handle my issue, to the point where I can more or less shut my mind out of my body for hours. Kind of awake sleep. I have no notion of how many hours I'm out, but I'm aware the entire time.
What I've gone through to get to that point, I wouldn't wish for my worst enemy.
You're mixing the two up I think. What you've described is severe migraines. During a "typical" cluster headache episode, you're restless, because movement doesn't make it worse. You are gatekeeping pretty bad. The MD I've seen have given me the diagnosis cluster headaches with symptoms of migraines. Last time I had an episode, I was laying new flooring, noticed it coming and do the only thing I could, take some painkillers and power on. Before long I was cutting boards wrong, trying to lay them the wrong way around, and at some point my wife directly asked me if I was okay because of the atypical behavior. I wasn't and I made my way into the bedroom and didn't emerge again for 3 hours. Any sound, light, or movement during an episode is pretty bad.
> not belittling other people's experience with them by implying they can "just take a paracetamol and tune out the pain".
I've never implied that. I've said that is what I can do. You seem to be incapable of accepting that cluster headaches can range from something manageable, to something that makes people commit suicide. As I've mentioned, one of the leading MD on headaches in Denmark have diagnosed me with cluster headaches.
> A single, severe cluster headache/migraine the likes of which some people get would have sent you to the ER immediately begging for any medication to ensure that such a headache never, ever, ever happened again in your entire life.
Except a 10yo can not just go to the ER for that, and when you grow up being told to get over it, you find other ways to manage it.
> These are the types of headaches that paracetamol has no chance of even touching. Only incredibly powerful opiods/barbiturates even have a chance of relieving them. And that's just talking about the acute pain. The other terrible part about migraines is their chronicity.
Paracetamol is not handling it, they often stop it, or rather, it stops the thing that is causing it to develop. Why it's working, I have no idea - but it's, according to the MD, normal that medication in the initial stages can significantly reduce severity or even stop an episode.
>> and I would feel guilty not doing anything with a headache, because people around me constantly said "I have a headache" but acted like nothing was wrong.
> This is essentially what your comment is doing right now, and that's why it's insulting
Let me get this straight. I'm saying I've been diagnoses with it. I can often successfully stop it, and when I cannot I'm "out of service" for hours. How on Earth is that making people with the same condition feel guilty?
Actually, this is pretty interesting. I'd be really curious if NSAIDs like ibuprofen or naproxen have the same effect. APAP has a novel mechanism of action at the cannabinoid receptor type 1, because it's a prodrug for AM404. That's the only target that I've ever found that kills my migraines (N.B. prescribed synthetic, not so much smoking joints or anything).
Out of curiosity, is that a professional medical opinion, or is that yours?
I also have to sit and "do nothing" for an hour after my breakfast, because I get such a bad stomach aches if I don't that I can hardly walk (yes, yes, I have seen many doctors about it, I have tons of good advice et cetera) - so I usually start work at 9pm and whenever we have an early meeting or gotta see the doctor early in the morning I feel like shit and scared. This I guess too can be categorized as a chronic attendance problem :)
If that new (or any) drug works for you - great. But consider that there are no nerves that are responsible for the pain feeling in the brain itself. So we must conclude that the pain is psychological and should be treated that way.
For me the treatment was a routine to pull out my (silly) fears from being consciously or unconsciously suppressed and verbalize them. Once those fears were verbalized the headache would go away. So in my case the headache was a signal of an important thinking to be done that I have blocked away.
Verbalizing was initially easier by just writing down all thoughts even most silly on a piece of paper. Later I could do it in my head.
Maybe it’s a different thing in your case, still chances are you can find an exit “backtracking through the entrance into your condition”, so to say. The challenging part is to get the insight as to what your deadend looks like.
I think there is danger in the original thought: That the pain is psychological. This most definitely isn't always the case and tends to make folks not take the pain seriously. This is a major problem for women: They are already sometimes told the pain is all in their head with migraines, especially if PMS and hormones are triggers. And besides, we know that brain tumors can make folks have migraine-type headaches. Blood pressure can cause headaches. And so on. I'd much rather it state that psychological issues can be a contributor: We can't presume the pain itself is psychological.
That said, it'd be silly to think that things like stress never affect it. This is especially true if you get cluster headaches or if stress is one of your triggers. My mother is like this: She gets cluster headaches that persist for months. Part of her treatment is to take an anti-anxiety medication. Granted, this does not stop the headaches, just makes them slightly less frequent or at least gives them less intensity on a daily basis.
So I had been diagnosed with a constantly high blood pressure and prescribed medication. It was a good thing because I have for first time in many years realized what normal blood pressure feels like. And it felt good!
My doctor is a good one though and she told me that the medication is not a solution to my problem as there is no clinical reason to it. I had to find a way to control my blood pressure without the pills.
And I have found the solution - a power nap. I just have to have some 15-60 minutes siesta after 4 hours of work. The thing is, nobody and nothing was forcing me to have a high blood pressure, it was me myself. See?
It's easier said than done, you might say. But I have done it and now I'm telling you about it. And it's not easy to convince you :-)
Approximately ten minutes before my pain starts, I begin to sneeze uncontrollably and vomit even with a completely empty stomach. This continues throughout the pain, and has lasted in excess of 72 hours before. They are spontaneous and there is no identifiable trigger, even after 25 years of looking.
How do you suggest I think my way out of this one?