ChocoMare explore oxygen therapy as I mentioned earlier in this thread…it was a life saver for my husband…
I am DEFINITELY going to ask about that! I much prefer simple!
Cluster migraines are terrible…mine got worse during peri menopause! The Botox has helped, especially the Botox into the back of my neck…hurts when injected, but now I can actually palpate those tendons that run up into the base of my skull without any pain where previously it would trigger an almost instant headache! This past month I only had true migraines for the 2 weeks before I was due for a Botox treatment again…what a relief to be almost migraine free!
I’m late to this thread, but my sister eventually went on beta blockers as the only thing to help her, even though she tends to have low BP. Mine are mostly hormonal, but changes in sleep patterns are a big trigger. I don’t think I could ever do shift work for that reason unless I could stick to a similar schedule all days. Polarized sunglasses help me when outside a lot. With hormone therapy, the bad ones are infrequent enough that I can take Maxalt, but with my sister, they kept getting worse and she needed something daily. Didn’t like the side effects of most migraine drugs but the beta blockers are working well for her—she went back to school to become a doctor and seems to be surviving through her residency, so it must be working for her still.
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It’s always good for me to have a support group, I’m glad this thread is resurfacing.
Another chronic migraineur here! I’m pretty well controlled now on trokendi XR (250 mg) and botox. This combo has taken me from about 30 migraines/month to 10ish. That said, I don’t have a good acute treatment. I don’t do well on triptans. I’ve tried some of the new CGRP inhibitors and they didn’t do anything (auto injector/preventatives). I’m currently trying the oral abortive pills (Nurtec and Ubrelvy), but I’m not really having much luck (but no side effects which is a plus).
My issue with abortive meds is that by the time I take them, it’s too late. I don’t get ocular auras, though sometimes I get verbal auras (transient aphasia). The problem is, sometimes (more often than not) I get the transient aphasia as part of a silent migraine (no pain), so if I take medicine at first sign of the aphasia, I don’t know if it’ll work or not as I may or may not get pain. If I wait for pain, it’s too late and never works. It’s a never ending problem.
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My issue with abortive meds is that by the time I take them, it’s too late. I don’t get ocular auras, though sometimes I get verbal auras (transient aphasia). The problem is, sometimes (more often than not) I get the transient aphasia as part of a silent migraine (no pain), so if I take medicine at first sign of the aphasia, I don’t know if it’ll work or not as I may or may not get pain. If I wait for pain, it’s too late and never works. It’s a never ending problem.
Pompeii, I too get that aphasia aura, sometimes my “silent” migraine very suddenly turns visceral and I am running for a bathroom. TMI I know. Anyways, my DH just bought me a Reliefband which is FDA approved for nausea. I’ve had it a week now and won’t go anywhere without it. Pop it on soon as queasiness starts and within minutes I’m back under control, no drugs, no waiting. It looks like a FitBit, but it sends out a little electrical charge to a nerve that travels through your wrist. Apparently that nerve “talks” to the nausea centers in you brain and guts and tells them to take a chill pill. It was originally developed for people undergoing chemo.
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I just want to say I’m glad to know I’m not alone in the aphasia auras. I have spent the better part of 30 years trying to explain those to people, including medical professionals. Only one neurologist “got” it. I’ve been judged because of the auras and it’s no fun. They are a part of my silent migraines too, and I think because I look ok and I’m not flat out in bed and puking when the aphasia happens people assume the worst.
ETA: IPEsq beta-blockers are one of the only things that works for me, been on them for about 15 years, maybe longer. Time flew by!
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For years I’ve gotten the aphasia and had no clue what it was. It started after a bad concussion and never went away and I just assumed it was that and not part of my migraines. I mentioned it here and there to doctors but never really pushed (I didn’t have a word for it so it was hard to describe). It wasn’t until I was watching a youtube video that I heard someone describing my exact symptoms that I realized that it was actually part of the migraine aura. Some are with the headache phase, some aren’t, but all are likely migraines. I mentioned it last time I was getting botox and at least that neurologist listened and didn’t blow me off… I’ll have to chat about it with my regular neurologist when I see him in June. Having a name for it makes it so much easier to describe and talk about. But, I truly hate the aphasia. It’s way worse than pain because it’s so paralyzing. I fear being somewhere and being struck with aphasia auras and not being able to communicate.
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Me too. I’m a professor at a community college. I’m fortunate that I don’t completely lose my ability to communicate. But it’s hard when I’m in front of students and can’t find simple words. I’m pretty sure they think I’m high or drunk sometimes. I tell them it’s my migraine meds, or that I’m an absent minded professor. It’s just easier to explain it that way. They’ve seen me lose all color in my face often enough to understand I get migraines, but it’s not fair to them. I’m retiring in a month. At least my horses don’t care if I forget their names 
For rescue I’ve had some success with REYVOW followed by Nutrec in about an hour.
I hate taking triptans. We all know the downsides. Of the triptans the injectable Zembrace has the fewest side effects for me. REYVOW can have some funky side effects so I don’t take that when I’m driving thus the Zembrace.
Good to know about the Reliefband.
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Wow I had never heard of verbal auras before. I get ocular ones that can be very severe. The worse / longer the aura, the more killer the headache will be. I will also sometimes get some ocular stuff that’s minor without the headache. But unless it happens at night/wee hours of the morning and I wake up with the pain, I usually get enough warning to take abortive meds. And that plus hormones means I’m not taking them so often that they lose effectiveness. At least not yet.
I was taking the dissolving Maxalt but the taste is bad and I started to associate that with the migraine nausea, so I just have to take the regular pills now or swallow those other ones whole and cross my fingers I did it in time that I won’t have too much nausea to keep it down.
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IPEsq, I cannot emphasize enough what a godsend the Reliefband has been in regards to nausea. Try it! Comes with a 30 day money-back guarantee so what do you have to lose? (I would attach a link, but I don’t know how so…)
I too get the verbal aphasia, though not every time. It is a strange sensation to have to think hard about the words you need to say and how to say them. Makes me feel very fragile, indeed.
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Thanks! If I’m lucky, I won’t have a migraine in the 30 day period anyway. I have had a lot fewer ones since working from home full time, even with the other stresses of the pandemic. I think maybe only 5 this past year? Low enough I could actually count them and not be like, well, I don’t get so many that I have to run back to the neurologist or change my meds, not few enough that I don’t want to renew my prescriptions.
I was a migraine sufferer from my mid-20’s through my mid-40’s. For some reason I’ve since forgotten, I had to take Prednisone and discovered that it aborted a migraine for me within an hour (usually a 2-day event). For about a year, my doctor allowed me a single 20-mg Prednisone tablet to use as soon as I sensed one coming on, and that would take care of it (about 1-2x per month).
Then one day I was talking to a fellow migraine sufferer who told me to try Alka-Seltzer Plus (the effervescent tablets, not the capsules). Lo and behold, it worked for me, and I ditched the Prednisone. Now I keep Alka-Seltzer Plus with me all the time, and, honestly, I rarely have to use them. I’m early 50’s now and think I’m mostly through menopause (started in my early 40’s). I’m not sure if that has something to do with my decreased incidence of headaches, but I’ll take it.
Hope the OP has found some relief.
Multiple friends have told me that their migraines greatly decreased or ceased altogether at menopause.
I definitely think there is a hormonal link for me. The worst migraine I’ve ever gotten in my life was right after I tried to resume birth control pills. We were in New Zealand at the time, which came with its own triggers (suddenly transitioning from winter to summer weather for one), but the day after I took a BCP, I got a migraine that lasted a full 72 hours and absolutely nothing could touch it. Needless to say, I did not continue the BCPs.
The most common time for me still to get migraines is in the run up to my period. I have both endometriosis and PCOS as well for added fun, so my periods are just a painful time. I can’t wait until I hit menopause.
Mine improved after menopause, the severity of them is less but the frequency is the same. I’ll take that as a win.
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My hormonal migraines definitely have decreased now I’m peri menopause and once full menopause hits, they’ll probably leave all together BUT my other migraines…nope! They are related to pressure changes with the weather and tannins in certain food and wines! This, for me, is where the Botox has become my lifesaver. I can tell it’s worn off and I’m due again as they are back! The Botox generally wears off about 3 weeks before you can get another treatment at 3 months, and back they come…and then out comes the triptans!
Botox wearing off is a nightmare! I get a good 2 months out of it and then a switch is turned…
I will say, botox hurts a lot. I’m jealous of everyone for whom it is pain free.
