Frustrating
I had my 3rd migraine in a 7 day stretch yesterday. I once again did not have my medication at work (restocking my work bag now . . .) so I spent 5+ hours seeing patients and pretending everything was great while in constant pain (the migraine started just before noon).
I came home barely able to function and I need to find a solution. Life is full and challenging right now but honestly at a level that in theory is doable and realistic — but not if I am dealing with massive headaches half the time.
I am grateful that my rescue med (Ubrelvy, if you are curious) does always seem to work and that it is covered by my insurance.
I *could* try taking it every other day as prophylaxis; the neurologist/headache specialist I’ve seen twice now told me this was an option. I think I might do that for the next couple of weeks and see how it goes. Alternatively there are some monthly injectible options. But I think I have to accept that I’m not going to solve this with just hydration or protein or something. I have tried those things and they are not enough right now. There is a weird undercurrent where I feel like I must be doing something wrong to cause these, but I think I just have to move past it and accept that they are just something I need to deal with.
(Yes, have tried magnesium/CoQ10 and Migrelief before. Both made me too tired to function so I gave up.)
Hobonichi Sales Day
On a happier note – it’s Hobonichi Sales Day! September 1st is the official day, but in my time zone sales start at 10 pm on August 31st, so . . . today. Annabel plans on joining me for the ordering ceremony (it feels worthy of this title!) this year.
We will both be sleep deprived tomorrow but hopefully we will get our covers of choice!
Full lineup and shop is here. With prices shown in $USD this year!
Best Laid Plans Academy
On a much happier and upbeat note, BLPA Fall 2023 registration launches tomorrow!!! I have gone back and fourth on the session timing but I think I am going to go with 1 pm Eastern. Or 2 pm!? Thoughts are welcome in this eleventh hour! If you are interested in joining this round, please make sure are signed up to receive the newsletter since the link will be released there first, early tomorrow AM.
47 Comments
I’m sorry about the migraines! I know it is all very individual but I’ve been on the monthly injectable Aimovig or Ajovy (depending on which one my insurance covers in a given year) for a couple years now and it has helped tremendously!! I used to have migraines about 4 days a month, usually hormonal, and now I’m down to maybe one minor headache a month. It is so nice to not lose full days any more!
More migraine advice — I am sorry that you are dealing with this! Someone online was in treatment at Johns Hopkins and they recommended 1 anti-nausea pill, 1 caffeine pill, and 1 benadryl every time you feel a migraine coming on. I’ve been using this (I have them in my work backpack!) and they have warded off several migraines now. Additional caffeine helps in this process, too. It certainly wouldn’t work with a full blown migraine, but just something to consider if you are seeking an (almost OTC) solution for mild days.
E, what kind of anti-nausea medication?
Oh man, I really resonate with the vague undertone that it should be something you can ‘fix’ somehow. Mine have decreased markedly but I think it was getting cervical/thoracic spine and central nervous system stuff under control that made the difference. Or it was hormonal.
That said I also gave up all caffeine (including chocolate!), stopped any processed meats with nitrates, no msg and no red wine. Maybe it’s made a difference? But more likely it hasn’t. I’m back on chocolate at least anyway, and not worried about incidental msg or nitrates any more. I think on some level the idea that I can control something that will make a difference is very appealing even though I realise it’s not entirely rational.
I’ve not heard of Ubrelvy. If I take Sumatriptan as soon as I get the aura I can prevent the worst of it. I cant work through the aura though as I can’t really see for about 15 mins and then I just get the squiggly line for a bit longer.
Truly migraines are horrid. I hope the prophylactic approach helps string more good days together!
I tried 3 different triptans and they all made me feel like I was having a heart attack! I know for many they are lifesaving.
the very idea of giving up caffeine gives me an instant headache, lol. (I only drink one ~12-16 oz cup/day moost days but man – I really need that cup!)
I hear you. I seriously grieved caffeine, and I drink a lot of good quality decaf now. I didn’t stop purely for migraines, I also had weird heart palpitations that annoyingly got better when I stopped. As did my anxiety.
I think you should absolutely keep that coffee – I still remember the joy of the morning coffee. Decaf tea does not scratch the same itch!!
What about your sleep? You have mentioned that has been suboptimal lately. My husband gets migraines and lack of sleep can be a major trigger for him.
I get migraines totally randomly twice per year and they aren’t painful but I can’t see, so obviously that is problematic. Thankfully motrin reliably kills them. I did also get horrible tension headaches when I was in residency that I attributed to lack of sleep and near constant stress (also gerd for the same reasons), both of which are now almost totally absent from my life due to, er… lifestyle modification (i.e., not being a resident). You said yourself that you aren’t sleeping enough — maybe getting into bed at a more reliably earlier time would be helpful? Obviously this may be easier said than done — when Dylan has activities we get home at 8, and I go to bed a full hour later than when she doesn’t, and you’ve said you have activities until 8 most nights which honestly would be unsustainable for me. I know maintaining this lifestyle is important to you, but if it’s not allowing you to care for your body in the way that it needs, maybe it’s not worth it.
Or perhaps taking migraine ppx would solve the issue for you. IDK.
Yeah that’s the whole lifestyle piece. I’ve tried, I really have. But I’m running out of patience/ideas.
The amount you fit into each and every day astounds me, honestly. And FWIW, I have been going to bed at 8:30 with the plan to get up at 5:30 on clinical days and 6:30 on non-clinical days because I am TIRED, and the insomnia has been kicking my ass lately. Ugh. I am sometimes so jealous of people who seem to be able to function on 6h of sleep. Imagine all I could get done if I had a few extra hours in my day!
I am okay on 7 hrs but maybe I am not that okay since I now seem to have chronic migraines 🙁
also – your job has longer hours and likely higher intensity than mine! so can’t really compare!
THIS! “The amount you fit into each and every day astounds me, honestly.” I came to comment essentially this sentiment.
I am so sorry that you are suffering from recurring migraines. It stinks. I have no migraine-specific advice to share, but as a regular reader of your blog and listener to your podcasts, I feel like some general “it’s easier to notice when it’s not you” feedback could be:
1. You seem to be an extremely high functioning, goal-oriented Upholder, who perhaps regularly faces (falls into???) the temptation to add more to an already-full plate. (I just looked it up and as recently as June 6th you had a post about how your weekly to do wish list was too long for the amount of hours in a given week.) This exact thing happens to me, too, and it’s extremely frustrating to want to do more than is actually possible, by the way. I am very sympathetic.
2. You have found a way to schedule in everything you want to be doing with your tried-and-true 7 hours of sleep.
3. You moved things around so the exercise portion of your day could increase in time and intensity for marathon training, which is important to you. HOWEVER…
4. You did not increase the amount of sleep to reflect the increase in training. Is it possible that while asking more of your body in this season of training, you may need to give more back to it in the form of sleep?
Even if your uptick in migraines is unrelated to sleep, you’ve mentioned being very tired and not getting enough sleep, especially with the late weeknight activities going on. Can you:
– move your runs to later in the morning on the days you don’t go into the office?
– have your nanny come in later a few days when there are late activities so she can do those and you can go to bed early, like 7 pm?
These changes don’t have to be permanent, but maybe they would overall help you feel better during this season of training?
Anyhow, this is just an idea, and certainly meant with hope of being helpful. More sleep is never a bad thing — even if you need to pair it with more medicine or other options to tackle the migraines!
this is all very true and valid (and sometimes I feel like you all know me REALLY well!! ahhhh). I love the idea of running later tues/thurs but often something random gets in the way. i love the idea of a weekly 7:30 or 8 pm bedtime . . just need to find a way to make that happen b/c with activities etc it’s more complex than it sounds.
The other thing to consider is whether intentionally slowing down or resting just a wee bit more may be a productivity hack. Example: When I feel terrible (tired, achey) and I’m working on something, I feel so much pressure to power through, and the work ends up either not getting done, taking way too long, and/or being lower quality than what I can produce when I am feeling good. If I allow myself to take a nap, I often wake up and *tada* my brain works again. This approach has allowed me to feel less guilty about being in bed for 10h a day, exercising (when I should be working, duh!), journaling, reading for fun, and spending time with my family. My body has started feeling better, and both my productivity and the quality of my work have improved. It can be SO HARD to allow yourself the space for self care because of all the demands that life puts on you, but if you permit yourself self care as a productivity hack you may find it more acceptable and be pleased with the results.
Ubrelvy (ie. ubrogepant) is a (CGRP) receptor antagonist with half life of 5-7 hours and maxing out at 1.5 hours. I would ask your doctor if the change is levels might be triggering rebound migraines. I struggled with 8-15 migraine days taking various short half-life triptans (not the same mechanism, I know). Eventually we figured out it was the rescue medication’s swift increase then decrease that was a trigger for rebounds. I ended up using Frova (frovatriptan) instead – Tmax is 2.7 hours (ie. kicks in more slowly) but the half-life is 26 hours (ie. drops off slowly). That took me down to 5-7 migraine days a month.
Then, I also got on a 90 day birth control to help minimize changes in hormone levels (though I do still get some spotting). Those no-pill days are higher likelihood of migraine. That took me down to 3-4 migraine days a month.
Then, I added on the monthly injectable Aimovig then Emgality (switched insurance providers), and that got me down to 0 (!!!!!)-3 a month.
I can still end up triggering a migraine above that level if I have red wine (I no longer drink it ever – other things are ok), exerting and under-hydrating in the sun (I wear hats and drink electrolytes and can do most things), skipping meals, or going days with less than 5 hours of sleep. But those times are avoidable, and attributable – which honestly is less frustrating since it’s clear how I can avoid it in the future. I did all this with a neuro specializing in migraines (Harvard/Stanford background and who is a person with migraines themself) – after trying a million diet changes/neck muscle relaxers/triptans/anti-seizure meds. I thought at the 15-day levels that I was going to have to quit grad school. Now, I am able to count on being able to do my work pretty much every day I need to.
All this to say – I would keep trying to improve your quality of life and manage your migraines (not only abortive treatment, but prevention). For 1.5 years, this took a HUGE amount of energy (appointments, tracking triggers and symptoms, battles with insurance). But for 6+ years now, I get 3 medications I pick up every 3 months (daily birth control, monthly injection, very occasional rescue medication as needed). I get biochem tests once a year to check liver etc (just in case) at my regular physical. It’s stable. It’s predictable. I barely think about it. It’s *wonderful*.
Update: according to the Mayo clinic info:
“A newer group of migraine medicines known as gepants don’t appear to cause medication overuse headaches. Gepants include ubrogepant (Ubrelvy) and rimegepant (Nurtec ODT).”
So ignore that part 🙂
Thanks for all of this, Kat. To echo above comments also, it is so interesting how individual this is. Ubrelvy does nothing for my headaches. I still take an old fashioned Triptan. That said, a lot of times I can ward off a milder migraine with 2-3 Aleve and a Coke if I catch it early enough. Yes, my neurologist taught me this trick! I am on monthly Emgality injections (had to try multiple injections to find the one that worked) and daily Topomax, and have a hormonal IUD, none of which I can go off of without jumping back up from 0-2 migraine days a month to MANY. Even with all of that, sometimes I go through periods where I just get them and there is absolutely nothing I can do about it. All you can do is try the preventative meds, try to sleep, eat and hydrate, and not give yourself too hard of a time.
Thinking one of the long actings may be worth a try for me too at this point. I don’t want a hormonal IUD.
I always do a small handful of Advil and a Coke at the first sign of a headache. Glad to know this is MD recommended!
I’ve never taken a prescription migraine medication, but I can absolutely relate to the candle burning at both (all) ends. Sleep is precious and absolutely required when waking up early and demanding a lot of your body!
thank you Kat!!!!
I am so sorry you’ve been dealing with headaches. It might the combo of more running/more intense training in high heat/humidity and less sleep? But I know you are loving the training and really want to focus on marathon training. So if there is no downside/bad side effects of the prophylactic treatment, I would go that route. And/or consider the injectable. I can sympathize with wanting to live a certain lifestyle and not being willing to give up running/more intense training to manage the headaches. I think of it how I think about my RA. There is only so much I can do on my own in terms of nutrition/avoiding certain foods, prioritizing sleep, etc. Beyond that, I need to rely on medications that were developed to help my patient population. I get REALLY sensitive to suggestions from others about trying to “heal myself” by like drinking turmeric milk, etc. Sometimes our health issues go above and beyond what we can achieve on our own and we need to rely on prescriptions. I know our situations re far far far different but I guess I’m kind of giving you permission to rely on a drug to help solve this problem. Not that you needed permission but I feel like there can be pressure to change your lifestyle, etc, to solve things and maybe it’s not worth all the mental gymnastics and trial and error if you feel terrible while trying to solve it on your own.
YES 100% makes sense. At some point you just have to accept that pharmaceuticals are the answer (and your situation it is even more clear since progression/worsening of the overall condition would be expected I think if you didn’t treat. in my case it’s just suffering but it still sucks!)
Another ubrelvy user here. Works great. I have many triggers, incliding sleep and WEATHER. But My migraines definitely have a postural/ muscular component. Pt helped a ton , as does regular massage. Hope you can figure out soon.
What is it about August and migraines? I’m traveling for work this week and woke up yesterday with one .. and then my 17 yo dd called me to say that she has a migraine and wanted some advice. I hope you’re able to get some short term relief and long term solutions quickly. I don’t get them very often, but when I do they are MISERABLE.
I ordered my first hobonichi last year — grudgingly because I loved the W222 but just could NOT with the stacked weekends. The grudgingly part for the hobo was bc I did not want the daily pages and the chunkiness that came with the extra pages. So fast forward several months, and now I love the daily pages. HOWEVER – since the W222 is doing UNstacked weekends for 2024, I’m ordering the A5 “planner only” version plus a couple of accessory notebooks for daily pages. I’m a little unsure about splitting up the daily pages from the planner (how ironic, no?) but I’m embracing trying something different.
i actually prefer two separate notebooks so I can look at the weekly while drawing out my daily and have some weird hybrid ideas about an a5 avec + stalogy next year . . .
I am so sorry that your migraines have been so debilitating lately. Do you think that your migraines could be linked to the weather and a drop in barometric pressure? My husband’s migraines are linked to the weather and July and August are usually tough months for him. I hope that you can find relief soon.
heat, humidity, pressure- so hard to know! I do feel like being overheated is a trigger.
I have been using Emgality and it has been soooo helpful for me. I have a triptan and ubrelvy in case of breakthrough but I hardly need to take them anymore. Good luck finding a combo that works for you!
I’ve been able to heal my (many years of) migraines using the Curable app. I’d say I’m 90% migraine free, which is amazing for me. They have a free trial and then I quickly upgraded to a paid version- I think it was $59 for the year at the time. Of course, YMMV, but this is what worked for me so thought I’d share. Also, The Cure for Chronic Pain podcast with Nicole Sachs is a great resource.
very interesting – what does the app do!? looking it up!
Ok, I am going to do some tough love here. Everyone else has great suggestions, but they are phrased in very kind ways. I’m going to be blunt.
Something is going to give here at some point. Either you get to pick it, or it’ll be chosen for you without your input. Your body is telling you something is wrong, but you seem to believe you can “hack” or plan your way out of it. While I believe you can have the best of both worlds and have learned so much from you, I worry that you are going down a bad path that could lead to injury, sickness, damaged relationships, etc. You have 3 YOUNG children, a career and a side career, and marathon training to contend with. I understand the marathon training is important, but maybe this wasn’t the season for it. Maybe a half marathon would have been a better idea. From my perspective, that is the only thing that can give. You can’t return your kids (jkjkjkjk) or Josh or completely quit your job *or maybe you can*. You are not 22 anymore. The needs of your body are changing.
If your head is literally throbbing multiple times a week, it’s up to you to make changes! The to-do list needs to be slashed.
I can’t be totally tough love so ((hugs))
🙂
I hear you and it makes sense. But I’ve had migraines for years now (2019 I think?) and while I think exertion is a trigger I’m not generally miserable (other than when actually having the migraines) so I’m not sure they are as much of a smoking gun as it might seem. I also did some changes to birth control that I thought might improve the migraines but maybe worsened them … but I don’t want to change back right now. I do need to sleep more, that is true.
I was going to ask about any birth control changes as hormonal birth control was a huge trigger for me, along with lack of sleep, stress or delayed eating. I still occasionally (as in, a couple of times a year) get migraines, but coming off the hormonal birth control is what broke the cycle of almost continuously having a migraine (like, one would start sometimes only a day or two after the last one ended). I know you’ve said you don’t want a hormonal IUD – as I’ve mentioned before, the Mirena has been completely life-changing for me, so I’m a big fan now, despite massive hesitation about it beforehand – but wondering if your current birth control is contributing and if there are any other options available to you for that (e.g. is there any way you could hand off birth control to Josh?). But as others have said, I think you lead an extraordinarily busy life and hormones/birth control may be only one possible trigger.
Yes – actually did make a change there and am off the hormones for now. Thus far if anything it’s been worse BUT it hasn’t been that long. Maybe this is an adjustment period.
Aha. I can’t remember if I had an adjustment period or not but hopefully it will help you Sarah. I hate that hormones/birth control remain a roll of the dice to see what works/doesn’t work. I found the migraines resolved but my mood was worse until I got the combo that works for me (Mirena and Oestrogel). Hoping you get relief soon.
Have you tried cranial/sacral osteopathy? It’s been life saving for me. I suffered w basilar migraines triggered by a bad car accident for nearly 15 years. I was on multiple meds for a long time. Now very rarely need even an excedrin or Diamox. Vitamins also help A LOT: b12, magnesium, lots of D. Gave up caffeine 15 years ago. Green juice or water does the trick. And no hormonal fluctuations due to skipping the placebo week of birth control. It took a long time to manage. But a monthly cranial osteopathy appointment is what really helped.
Oh Sarah. I so feel for you. My only advice is to figure out your triggers and avoid them. I worse sunglasses outside no matter the weather because glare from the sun or anything else was a trigger along with strong smells. I had several food triggers also, but I was in denial about that for a while. Hello chocolate. If I had an episode of getting really hungry with the subsequent low blood sugar, I would get one. Three days before my period I would get one. During ovulation I would get one. I never had one while pregnant. I felt great! I was diagnosed after having a mini stroke at the age of 26. That was about 1983. After menopause I have a rare one, but they no longer cause me to lose entire days. I can usually do normal activities (with pain meds). I went from getting rid of them if I could fall asleep, to at their worst lasting up to 48 hours or so. I lost a lot of days, and I was lucky I was a medical transcriptionist and could go home. I was also lucky to have a husband who already was responsible for the food chores, would jump into super dad, dropping off and picking up the girls from day care, school or activities. I suffered for over 30 years. Now at 65 and married almost 45 years (9/8/23) we are enjoying our retirement with our 4 granddaughters 15, 9, 2-3/4 (autistic) and almost 9 months.
Oh and as far as caffeine, my doc told me to have one cup a day, at the same time each day would help prevent them. I still only have one cup a day in the morning. Enjoy your caffeine!
Oh man. I have been in the same boat as you with the migraines! I tried what felt like everything available to manage them, and finally, in a hail Mary attempt, went to an ENT because I thought they might be allergy/weather related because it seemed like every time it rained, or got dramatically colder or hotter, I would get a migraine. The ENT diagnosed me with TMJ, and now with some strategies and a mouth guard, my migraines have decreased. I still get them, and I still think there is a weather link, but they are down to 1-2 x a month rather than 1-2 x a week! Just thought I would share if any of that resonates with you! I hope you find a solution soon.
I second the allergy/weather idea! May not be Sarah’s issue at all, but for me, taking a Zyrtec every day of my life has made a huge difference too. And my doctor said I didn’t even have allergies, just “non-allergic rhinitis”. Same treatment though. Barometric pressure still gets me every time.
Nurtec has changed my life. I used triptans for years but definitely felt that I suffered from rebound headaches, plus the medication made me feel awful. No side effects with Nurtec and it works quickly! Migraines are awful and I’m so sorry you are dealing with them.
I have zero answers on this but just want to say I’m so sorry you’re dealing with this!! I have had one migraine in my life, a couple years ago. (I didn’t realize what it was at first, but it started with an aura and weird little vision flashes, and then progressed into a terrible migraine headache that lasted for hours… it was awful! I had been at an appt with my son on the other side of town and almost couldn’t drive home and then proceeded to lay in a dark room for hours before it finally passed.) It was so bad and I can’t imagine having that on a regular basis at all!!
I can’t remember if I’ve commented before, but I struggled massively with migraines during grad school, and it ended up they were totally linked to the hormonal birth control I was taking. My OB/GYN switched me to the mini pill (pre-kids, even! no issues with oopsies but I was religious about taking at the exact same time daily) and my migraines vanished. I’m now on my third Mirena (had one after each of my three kids) and I’ve hadn’t had a migraine in years. I don’t struggle with PMDD–which I know you’ve mentioned is why you like your OCPs–but just wanted to offer my experience because it seems like the migraines have started to really interfere with your day-to-day.
Me too Erin, I have definitely mentioned this before but I had migraines for 15 years, and it was 100% the combined birth control pill. I had a migraine every month, and my GP never put it together. As soon as I went off the pill (for other reasons) they vanished. Now it’s been 10 years. But I know everyone is different.
Thank you all – it is helpful to hear the different experiences! I am actually off of hormonal OCPs right now. (I thought it would make things better but. Maybe this is still an adjustment period.)
I am so sorry you deal with migranes. It seems to be one of the most frustrating things to figure out because they are different for everyone that is affected by them
I vote for 2pm EST please!