I think my Substack algorithm may have just caught itself up in a scintillating scotoma as I note this was first written back in July last year. It has been weird for a few days and I seem to receive stuff I’ve already seen days and days ago.
Enough with algorithm…it will do do as it do do, and there’s no doing anything about it…as Eliot wrote in Old Possum.
How well you describe the scintillation of the scotoma. And the rest. It seems I may be the only man replying (or maybe that’s just the algorithm again). They’re horrible. And have accompanied me since my adolescence.
It is helpful to know we’re in good literary company.
Don’t blame the algorithm! I reposted this because someone mentioned it but it was paywalled in the archive, so I unpaywalled and reposted it last week!
You captured this so well. Great description of the sensations of your type of migraine, which sounds very similar to mine. I get minimal visual aura though - it’s more of an internal “buzzing” sensation, and if I don’t manage to head it off before the nausea hits, then I’m in for it. Hours of vomiting. Anyway, this is one of the best descriptions I’ve read of how it’s so much more than a headache; migraine incapacitates the entire system, mind and body. Healing wishes from me to you.
Solidarity. It's always weirdly comforting to "meet" a fellow migraineur. Your description of the physical sensations are spot-on. (I discovered you through Notes just today, and followed a link in one of your recent posts. Hello!)
This is a club none of us wish to join and wouldn’t invite anyone for any crime. Is it awful then when I say I’m glad there are those who understand, even just a little?
First of all, I'm so sorry to hear that you've suffered from migraines for such a long time. I only have optical migraines (aura) which usually happens once a year and without much pain afterwards. But the experience was scary at first and I thought I was going blind or crazy. Your descriptions can't be more faithful to my experience. I can't remember if I ever had real migraines but before my 40s I had intermittent headache spells that were really bad and some were centered on a specific side of the head. I guess it was migraine? Since I changed my diet, it all went away, so I am more than relieved.
Your essay sheds light on the many aspects of a migraine and how it feels to live through it. I hope the awareness grows and that people will take it seriously.
Thank you for commenting, Louise. It is a much misunderstood condition by those who have no experience of it. During my peri-menopause years I was often disabled by migraine as they became much more frequent. Nowadays they are less severe but tend to come in clusters every so often. It seems that being a migraineur is a life-long thing!
My goodness, you describe my experience of migraine almost perfectly! The only difference for me is that I think the pain is less searing - mine is like a dull, constant tooth ache in the eye socket (usually the left, sometimes the right, every so often the left and then the right). They last predictably for three days, and they come on every 10. So interesting to read, thank you for sharing. One of those 'oh, I'm not alone' moments x
I am also in splendid company, in migraine terms, not necessarily in writing terms. :-) You describe it so vividly, and it was interesting to read about aura migraines. I don't have this type, I have a type that attacks my whole body, starting with the liver and the bile. And, as you say, only if you've gone through one you can really comprehend what it feels like.
On the upside, I *love* the term migraineuse! So posh and chic, I'll definitely take it! :-)
Thank you for sharing this article with me June. So very well written and you articulate migraine attacks so well. I couldn’t do this myself until more recently. I used to yawn excessively before attacks too. I wrote this article called “is migraine a really bad headache” in response to being asked the question last year. I believe so much in us being able to raise awareness and better understanding for this god-awful disease that has become so life-altering and disabling for so many of us.
I get sinus headaches and as I've gotten older they've become more severe. The worst ones mess up my vision for a day but I've never had a true migraine. I hope you are feeling some relief now that your episode is in the past!
In recent years it’s been declared that it turns out, there’s no longer such a thing as sinus headaches - it’s all migraine related (reference Migraine World Summit). Describing episodes/attacks as severe with visual disturbances are 2 major characteristics of migraine. I hope you don’t mind my stepping on and saying 🙏
That makes sense. Sometimes they come on as as cluster over one eye and they are awful. I was remiss to call them a migraine because I didn't want to take away from those who truly experience them. I guess my headaches have grown up! I appreciate you sharing!
A cluster over one eye is known as cluster headache/attack. I’ve had a couple of these and the pain is excruciating. If what you are describing is a true cluster migraine, this is now known as the worlds most painful experience a human can endure. I see it that there are many different types of migraine attack but the latest in the field is that this complex disease is now being viewed as a spectrum. I have seen some of us sufferers in the past day others can’t be experiencing migraine because of x,y & z but at the end of the day, pain is pain and all our experiences are relevant and valid. I used to be completely disabled by illness, living with the most unimaginable and unprecedented levels of pain. Now I’m in bed with mild to moderate pain and I can function through attack. It is all relative and at the end of the day, pain is still pain - of any scale.
Migraines truly are hell on earth. Haven’t had any since March 2016, knock knock knock on wood. My fiancée has them and they really suck. A headache is nothing compared to them, truly.
I think my Substack algorithm may have just caught itself up in a scintillating scotoma as I note this was first written back in July last year. It has been weird for a few days and I seem to receive stuff I’ve already seen days and days ago.
Enough with algorithm…it will do do as it do do, and there’s no doing anything about it…as Eliot wrote in Old Possum.
How well you describe the scintillation of the scotoma. And the rest. It seems I may be the only man replying (or maybe that’s just the algorithm again). They’re horrible. And have accompanied me since my adolescence.
It is helpful to know we’re in good literary company.
Don’t blame the algorithm! I reposted this because someone mentioned it but it was paywalled in the archive, so I unpaywalled and reposted it last week!
Cool.
You captured this so well. Great description of the sensations of your type of migraine, which sounds very similar to mine. I get minimal visual aura though - it’s more of an internal “buzzing” sensation, and if I don’t manage to head it off before the nausea hits, then I’m in for it. Hours of vomiting. Anyway, this is one of the best descriptions I’ve read of how it’s so much more than a headache; migraine incapacitates the entire system, mind and body. Healing wishes from me to you.
Thank you so much. Those healing wishes are coming right back to you!
Solidarity. It's always weirdly comforting to "meet" a fellow migraineur. Your description of the physical sensations are spot-on. (I discovered you through Notes just today, and followed a link in one of your recent posts. Hello!)
Hello! Welcome aboard!
I sooo understand. Your story is much like mine. Starting in my teens and ever since. The worst of it is the lost time hours, days ,weeks.
This is a club none of us wish to join and wouldn’t invite anyone for any crime. Is it awful then when I say I’m glad there are those who understand, even just a little?
It is absolutely not awful to say that. I wrote the piece because so many people don't 'get' it.
First of all, I'm so sorry to hear that you've suffered from migraines for such a long time. I only have optical migraines (aura) which usually happens once a year and without much pain afterwards. But the experience was scary at first and I thought I was going blind or crazy. Your descriptions can't be more faithful to my experience. I can't remember if I ever had real migraines but before my 40s I had intermittent headache spells that were really bad and some were centered on a specific side of the head. I guess it was migraine? Since I changed my diet, it all went away, so I am more than relieved.
Your essay sheds light on the many aspects of a migraine and how it feels to live through it. I hope the awareness grows and that people will take it seriously.
Thank you for commenting, Louise. It is a much misunderstood condition by those who have no experience of it. During my peri-menopause years I was often disabled by migraine as they became much more frequent. Nowadays they are less severe but tend to come in clusters every so often. It seems that being a migraineur is a life-long thing!
My goodness, you describe my experience of migraine almost perfectly! The only difference for me is that I think the pain is less searing - mine is like a dull, constant tooth ache in the eye socket (usually the left, sometimes the right, every so often the left and then the right). They last predictably for three days, and they come on every 10. So interesting to read, thank you for sharing. One of those 'oh, I'm not alone' moments x
Thank you for responding. Sadly, there are lots of us on here, sharing our migraine experiences. I hope you are pain free for a while, at least.
Nine days and counting :-)
I am also in splendid company, in migraine terms, not necessarily in writing terms. :-) You describe it so vividly, and it was interesting to read about aura migraines. I don't have this type, I have a type that attacks my whole body, starting with the liver and the bile. And, as you say, only if you've gone through one you can really comprehend what it feels like.
On the upside, I *love* the term migraineuse! So posh and chic, I'll definitely take it! :-)
Oh poor you. I have so much sympathy with fellow sufferers. Yes, Migraineur is fab, isn't it!
Thanks, the same for you! 🙏🏼 I hope with time (and hormonal changes) they will gradually reduce.
Yes. I identify with this post. I have intractable migraine. There is never a day when I don't have one.
I'm sorry to hear that. There is good medication out there - if it works for you.
So far, I have had little success. I don't respond to typical treatments. I'm glad you have found something that works!
Thank you for sharing this article with me June. So very well written and you articulate migraine attacks so well. I couldn’t do this myself until more recently. I used to yawn excessively before attacks too. I wrote this article called “is migraine a really bad headache” in response to being asked the question last year. I believe so much in us being able to raise awareness and better understanding for this god-awful disease that has become so life-altering and disabling for so many of us.
https://warriorwithin.substack.com/p/is-migraine-a-really-bad-headache
Hi, Amber. I came across this book recently, I wondered if you would might find it interesting too. https://www.kentstateuniversitypress.com/2019/more-than-headach/
I get sinus headaches and as I've gotten older they've become more severe. The worst ones mess up my vision for a day but I've never had a true migraine. I hope you are feeling some relief now that your episode is in the past!
In recent years it’s been declared that it turns out, there’s no longer such a thing as sinus headaches - it’s all migraine related (reference Migraine World Summit). Describing episodes/attacks as severe with visual disturbances are 2 major characteristics of migraine. I hope you don’t mind my stepping on and saying 🙏
That makes sense. Sometimes they come on as as cluster over one eye and they are awful. I was remiss to call them a migraine because I didn't want to take away from those who truly experience them. I guess my headaches have grown up! I appreciate you sharing!
A cluster over one eye is known as cluster headache/attack. I’ve had a couple of these and the pain is excruciating. If what you are describing is a true cluster migraine, this is now known as the worlds most painful experience a human can endure. I see it that there are many different types of migraine attack but the latest in the field is that this complex disease is now being viewed as a spectrum. I have seen some of us sufferers in the past day others can’t be experiencing migraine because of x,y & z but at the end of the day, pain is pain and all our experiences are relevant and valid. I used to be completely disabled by illness, living with the most unimaginable and unprecedented levels of pain. Now I’m in bed with mild to moderate pain and I can function through attack. It is all relative and at the end of the day, pain is still pain - of any scale.
Not one bit!
Thanks, Brenda. All good now.
Migraines truly are hell on earth. Haven’t had any since March 2016, knock knock knock on wood. My fiancée has them and they really suck. A headache is nothing compared to them, truly.
So true. There is no comparison. Hope you both stay pain-free.
Thanks, Rosy.
Glad to have you back, June, and to hear that you are pain-free.