This might seem a bit left field, but I wondered if anyone else has experienced migraine of one sort of another, in particular prior to an OC diagnosis. I suffered from visual disturbance, first diagnosed as 'optical migraine', now rechristened aura migraine, for the last 5 years. The attacks increased in frequency to the point where, during the last couple of years, I wouldn't drive anywhere I couldn't pull to the side of the road and wait out an attack before continuing my journey, but oddly, I haven't had a single episode since I had debulking surgery back in January. That is really odd, because the attacks were always much more frequent during spring and early summer, and I've had none at all. And come to think of it, I've not had any one sided severe headaches either since the surgery, which were also part of the aura migraine diagnosis.
I've checked online and the only scientific study on line is says there's no link, but that's not what people who've suffered some gynaecological problem (endometriosis for instance) are saying. Anyone on here with similar experience?
I'm just wondering whether its the CBD oil I started taking in March that's stopped the migraine, or whether its having all the cancer cut out...
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bamboo89
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Wow glad to hear you no longer suffer from your migraines.
I have suffered from migraine since my twenties, my mother also used to get them. Unfortunately mine continued after my surgery. I was on Avastin for a year which can also cause headaches so was interested so see what would happen when I finished in January but they have continued although are less frequent. Probably get a couple of month and have to avoid triggers of wine, chocolate and stress !!!
Met another lady at hospital who was also a migraine sufferer and was still getting them after her treatment, made worse by the avastin, almost daily at one point. I take zolmitriptan which normally helps clear them within a couple of hours so compared to the two days I used to spend in bed every month there managable.
Ooh, poor you - my type of migraine was never like that, I just got a blind spot in my vision on the left hand side, followed by enlarging zig zag lines which expand across the entire field of vision and into the other eye. 45 minutes or so later, all gone, no headache, carry on as normal. But I was getting one sided headaches separately, which were never that bad - couple of ordinary painkillers took the edge off, and gone by the end of the day. Probably the worst was the six months prior to surgery, when I might have had 3 or 4 episodes of visual disturbance in one day, and oh boy, did I feel really unwell after that, then I'd have to go to bed, but still no headache, just a weird, ill, out of body, dizzy, spacy feeling, usually with slight numbness and tingling in my face on the left and down my arm that side. I hope its the CBD oil that's done the trick - if its cancer, they'll be back when it recurs...
I started suffering from "optical migraine" when I was pregnant with my first daughter. They continued monthly after she was born and it was decided that I have hormonally triggered migraines. I too have not had many since my treatment. I wonder if there is a link with the oestrogen drop.
Hmm, not sure - mine got worse after the age of around 64, well past menopause, by which time, presumably, I had barely any oestrogen circulating anyway. Given my OC has differentiated into neuroendocrine cancer, maybe there's a connection there though, since the endocrine system produces hormones .. but I was told my cancer is not hormone sensitive. I think I might email my oncologist, although in my experience, she has about as much patience with this type of query as I do when dealing with sales cold calls... she has a similar attitude to any question at all, actually, come to think of it, she's one of those who thinks you don't need to know anything, unfortunately.
I have suffered from migraines all my life (well, certainly since I was around 6 or 7) and still do, unfortunately, though as I have got older they have often been just the aura without the headache. I don't think my operation made any difference to their frequency, though going through menopause 18 months earlier did reduce the frequency a bit.
I never had any sort of migraine ever until AFTER I had First Line CHEMO and began to have optical migraine, no pain, major visual disturbances with sparking, flashing lights moving in elliptical circles in center of vision. These migraines recurred in a routine pattern exactly 5 days from infusion and lasted for three days every single time for as long as infusions lasted. Same thing happened on second line. My eyes have become ultra sensitive to light. The migraines stopped a month after chemo complete.
What you describe is exactly what I experience, but obviously unrelated to chemo. Very intriguing that you should experience those connected with chemo.... no one's really sure what migraine of any sort actually is, other than its being a neurological disturbance, but it sounds as if, when you're not on chemo, you don't get them, which I guess is something to be thankful for. Thanks for replying
Hi Miriam. This is really interesting for me. I had my first visit from the "Sparkles" when I was 15. I've had years when I didn't see them. I never knew there was a name for them. I've asked a couple of opticians but they were vague. One even showed me in a book he had but again, no title for it and vague explanation.
I've been told that it's caused by stress - but on a couple of occasions, I've woken to have the Sparkles already part-way through, so concluded it couldn't be stress. In fact, I've never been able to link it to anything. I've never had a headache to accompany the sparkles but sometimes I feel a bit depleted after. But not so much I need to lie down. I usually just get on with things, even when it's happening.
I've been on avastin for a number of years and that certainly hasn't caused more sparkles. Nor did chemo. Probably 4 per week would be the most I get but I still may go a long time without it happening.
I wonder if, in your case, the de-bulking relieved pressure on your system.
As Welsh&proud says, my daughter is pregnant with her first baby and just had her first visit by the sparkles. Best wishes. Pauline.
Sparkles, what a great name for an episode! If you're interested, I only found out a couple of years ago that what we're talking about is now called 'aura migraine'. I bet I saved the link somewhere, but I'll have to seek it out if you want to read it - I do recall its classed as a neurological disorder, and may be related to epilepsy, which I was highly intrigued by, because one of my sons gets odd episodes without visual disturbance that vaguely resemble a mild form of epilepsy, but which do not respond to drug treatment, in fact, epilepsy drugs increase his attacks. There was some suggestion in what I read that this type of disorder is hereditary and may present differently, so where I get visual disturbance, he gets a mild form of what they originally thought might be epilepsy. Certainly, my neurologist offered me epilepsy drugs 5 years ago, but since, at that time, the attacks were very occasional, maybe 3 a year, I refused. But prior to surgery for the last 18 months, they were much more frequent and oddly, particularly bad during spring, with a break in the summer, starting up again in autumn and receding again during winter. I came to the conclusion it must be something to do with light levels... but who knows. Fact is, if its not going to kill you, no one in the medical industry is particularly interested... But I'm still curious as to why they disappeared after surgery - or have they disappeared because I started taking high strength non psychoactive CBD oil around March this year, just 1 drop 2 or 3 times a day. I'll have to wait and see what happens when the cancer rears its ugly head again....
The other connection is, unrelated to sparkles, I haven't had an outbreak of herpes either since the surgery/cannabis oil...
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