Migraines and migraines and migraines, oh my!

October 30, 2019 5:22 PM

My silent migraines keep getting worse. I am going back to the doctor in two weeks. What should I ask for? What are my next steps?

I've been getting silent migraines for a few years now where I get some blind spots and a scintillating scotoma. I had one horrifying one where I just got a big black blind spot in the center of my damn vision, but for the most part this is how they go. I used to get them every few months/years, but over the summer they got significantly worse, to the point where I was getting them twice a week. AWFUL! They're completely disabling. I'm a full-time student with multiple jobs and I literally cannot see when I get them. I commute to school and I'm afraid I'm going to get one when I'm driving and, at best, be late to class/work. Staring at a computer with one would be nearly impossible. They come out of no where.

Other stuff: I also get some kind of weird emotional shit where I get this strange, sad, familiar feeling that starts as a physical sensation right in the center of my abdomen, then spreads out through my body. I'm 100% convinced this is a physical symptom because I sometimes (but not always) get it before a migraine, and it's a highly physical feeling. Everything gets fuzzy and I feel nostalgic and strange. Sometimes I get it over and over. I have a history of epilepsy in my family; my mom has it, along with two of her siblings. There is no history of migraines at all on either side of my family. I have a kyleena IUD.

I went to a neurologist over the summer because they got so much worse. They did an MRI, which was essentially normal with some minor anomalies in the shape of my arteries, which they said not to worry about. They put me on magnesium, which worked wonderfully for a few weeks. I thought I was cured! I had no migraines or strange abdominal feelings. I felt normal. I honestly felt great. But now they're coming back again. I had a migraine last week and another today. The one today gave me blind spots for an hour while I was working. My job is online and I couldn't leave. Even after the migraine ends I still have gaps and shimmering spots in my vision, which slowly fade away. This is worse than it's been before.

And the strange stomach feeling is back. I had a really long once recently. I haven't been under too much stress lately and I can't identify any obvious triggers.

I'm concerned about school first and foremost. Do I need some kind of documentation on hand in case I have to run late or leave class early? We're going to be starting graded internships soon; do I need to make the internship aware in case I need to rest for a few minutes or I'm running late?

And what do I even ask for? I guess I can get their recommendations but it's frustrating because I feel like they're not taking me too seriously here. Would the next step be a stronger medication instead of just a supplement? I'm hesitant to do that but I will if I need to. I don't know if they're severe enough to warrant doing that yet. I'm just concerned about how they may affect my already full, busy life.

Any tips are appreciated. Thanks in advance.

posted by Amy93 to Health & Fitness (16 answers total)

Call your neurologist and tell them what you've said here. "The magnesium was working fine up until last week but now the symptoms are returning."

I imagine they will want you to come in for another followup and/or start you on other meds and/or have other scans done.

If you've already reached back out to the neuro and you felt like they weren't taking you seriously, talk to your PCP. (You should let them know what's going on, anyway.)

Re: your school and work -- contact the school and ask about the process for requesting reasonable accommodation for disability. They should help you understand what documentation you may need and how to coordinate reasonable accommodations with your professors and internship site(s). Your employee manual for work and student handbook should also have some of this information, if you're not comfortable reaching out to them until you've been able to speak with your PCP or neurologist.

Remember to give yourself grace! In situations like this it is easy to feel that people around you will be resentful or distrusting of you if you ask about these things -- that it will reflect poorly on your work ethic or reliability. But these are normal things that happen and schools/employers have handled these situations before. Assume that people will extend to you the same grace and compassion that you would extend to someone else if they were in your shoes.

Good luck. I have seizure disorder and an autoimmune condition which, while well-controlled now, were scary and confusing to diagnose, and meant that I had to navigate some of these disability processes. It's intimidating, but the biggest hurdle will hopefully just be overcoming your own anxiety.
posted by tivalasvegas at 5:41 PM on October 30, 2019 [3 favorites]

IANYD. Magnesium, which you've already been started on for prevention, isn't just a supplement but is actually a pretty good migraine medication; we use it in the emergency department with some frequency for acute migraine treatment and it's also quite commonly used outpatient as a basic preventative therapy.

Typically the next step medically would be to make sure you have appropriate abortive therapy at home to stop migraines when they start. Abortive therapy is treatment to stop your headaches post-onset. The cornerstone of abortive therapy is strong NSAIDs like ibuprofen, but there are all sorts of other drugs you can try for this purpose, including antinausea/antidopaminergic agents like compazine, triptans like Imitrex/sumatriptan, and many more.

Neurologists will usually also start you on a preventative medication if you get migraines with disabling frequency. Preventative medication does what you'd think -- it stops your headaches from starting. There are half a dozen agents that are commonly used for this. That would probably be the next best step here, along with re-addressing abortive agents with your doc.

So, I'd go back to your neurologist and ask about medication(s) for effective abortive therapy at home, and I would also ask about preventative therapy.
posted by killdevil at 5:43 PM on October 30, 2019 [2 favorites]

Response by poster: Quick note--I have Sumatriptan for when they start. The problem is I don't really get a proper headache, and the aura just needs to run it's course. The Sumatriptan also makes me feel like my skin is on fire (ouch) so I'm going to talk to them about trying something else. But that part is covered.
posted by Amy93 at 5:44 PM on October 30, 2019 [2 favorites]

I expect your neurologist covered this, but my own experience with these was that they got dramatically more frequent a few years ago, from once or twice a year to several times a week, and then I went off the birth control pill (switched to a non-hormonal IUD) and the silent migraines went back to a once a year frequency immediately. I've heard this correlation is not unusual. (And I hadn't changed pill brand or anything when they became more frequent - it just seemed to be a side effect that turned up randomly after years of use.)

So if that's not something your neurologist brought up, it's worth exploring.
posted by lollusc at 6:15 PM on October 30, 2019 [2 favorites]

Yeah, I cannot be on any estrogen-containing birth control at all because they give me a migraine. It's VERY common for HBC to give migraines to people who are prone to them. I would seriously considering switching to a non-hormonal IUD.
posted by Countess Sandwich at 6:24 PM on October 30, 2019 [2 favorites]

I'll focus on the other part: You should be able to get a disability note: you have a neurological problem that comes with disabling spells, with X frequency, which will disable you for X hours on average. If you were my patient, I would be perfectly happy to work with you and your school's office to determine your needs and a plan. You'll need to talk to your school's disability office, but really, this is not much logistically different that someone with, say, narcolepsy or a seizure disorder. You're fine until you aren't, but it does pass, so allowances like re-doing an exam or in-class assignment, or re-timing your practica, if it strikes during, should be part of the plan the office makes up with you.

This is not medical advice/ I am not part of your medical team.
posted by cobaltnine at 6:31 PM on October 30, 2019 [2 favorites]

Maybe look at Today’s Dietitian, Nov. 2012: "Migraine Headaches — Here’s How to Identify Food Triggers ..." Among other things, it seems to agree with folks about looking at hormonal issues first: "After environmental and hormonal triggers have been ruled out, patients should eliminate known food triggers ..."

You might also look at the recent AskMe "Tell me about your migraines (other than the obvious)," which points to further resources, e.g. /r/migraine on Reddit and Migraine Buddy.

As I mentioned in that thread, my migraines (severe pain preceded by scintillating scotoma / blind streaks in the center of my vision and a feeling that light sources were too intense) basically went away after I had my wisdom teeth out. They came back in much reduced form ~10 years later, but it's never been bad since. I doubt that's relevant--just an indication of how widely you might need to look for causes/interactions.
posted by Wobbuffet at 6:39 PM on October 30, 2019 [1 favorite]

I’ve still got my wisdom teeth, but my migraines have gotten much less severe over time. I started getting migraines around age 20 (college stress) and they were pretty standard “debilitating headache and nausea, go directly to bed and cancel plans for the day” migraines. The classic aura started showing up about 8 years later, and now, 20-odd years later, I basically get the aura but not much of a headache, particularly if I do my usual migraine cocktail of a big glass of water, a couple Advil and a slug of caffeine.

So, I’d still recommend getting checked out by the neurologist considering the family history of epilepsy, but frankly (IANYD) it sounds pretty typical for migraines. I won’t suggest dropping some of your workload except as a last resort, but at least do what you feasibly can to practice good sleep hygiene, stick with the magnesium (great for mitigating the physical effects of stress, among other things) and maybe get a multivitamin in. Mine tend to crop up after a few days of burning the midnight oil and getting 5-6 hours of sleep a night (like during a big project at work), so maybe look for a pattern like that, among the other suggestions people have made.
posted by Autumnheart at 6:54 PM on October 30, 2019 [1 favorite]

I know this isn't supported with science, but my migraines almost completely went away when I started taking a daily vitamin with iron. I take a generic version of Flintstone's that costs $4.
posted by Violet Hour at 8:16 PM on October 30, 2019

I came in to echo the other posters for whom getting off hormonal birth control basically ended frequent (several times a month?) ocular migraines that continued merrily along on the switch from a high-estrogen pill to a Mirena IUD. I did not enjoy removing the Mirena just to put in ANOTHER IUD 3 months later, but I get maybe one migraine a year now unless I let myself get super super dehydrated. The first 6 months on Paragard were some seriously crap periods, but sticking with it was worth it.
posted by deludingmyself at 10:24 PM on October 30, 2019

Some things that helped my migraines;

- Try all the triptans. Every single one. Figure out which one works best for you. I started with Sumatriptan but it gave me unbearable neck pain. My neurologist literally wrote me five different scripts and told me to try them all and report back. Eletriptan has turned out to be my best option.

- I didn’t believe my doctor about this at first, but there is actually evidence that 3 aspirin (1000mg) is an an effective first line treatment for migraine. It’s a high dose so check with your doctor that it’s safe for you. But it’s been useful for me - at least it gives me another option to take before I resort to the triptan, which tends to make me sleepy.

- Get your eyes checked by a really good optometrist and possibly a neuro-ophthalmologist, too. Ask them to look for anything that could be causing eye strain, even if you feel your vision is generally good. Problems like latent hyperopia (longsightedness that you are compensating for), and a whole bunch of conditions where your eyes don’t play well together (exophoria, heterotropias) can strain your eyes, which can be a trigger for migraines. I didn’t realise until I got reading glasses just how much I was straining to be able to read and how physically unwell it was making me feel. I’m not saying your eyes are causing the visual migraine symptoms, but if they’re under strain they might be triggering the migraines themselves.

Also depending on your ability to access expensive medications, there are a few new monoclonal antibody treatments which have been touted as “migraine vaccines”. Basically a monthly injection that can prevent migraines entirely. If your current treatments aren’t working, it’s worth going back to the neurologist to discuss what’s other treatment options are available to you. They might be more willing to prescribe the expensive/difficult options if they know the basic triptans aren’t cutting it.
posted by embrangled at 10:34 PM on October 30, 2019 [1 favorite]

Do you generally have a weak back, or historic back problems? I'm thinking muscular + either hormonal/stress/something else related (you mentioned epilepsy but I don't know anything about it) = migraine, because your migraines sound very similar to many of mine. If you know you carry your tension in your shoulders this could also indicate muscular. I'd suggest any physical therapy that focuses on posture and alignment - I've virtually cured my own migraines through yoga.
posted by london explorer girl at 4:45 AM on October 31, 2019

You are describing my migraines perfectly. I have had them for 30 years, off and on. When I get one I cannot see. Once you've ruled out neurological issues and vision problems, it might give you comfort to focus on ways to diminish/accelerate the progress of the migraine. If I migraine makes you panic, the panic can exacerbate the migraine.

Assume the migraines will happen. What do you do?

After some trial and error I found that FOR ME it's (1) quick medication - anything will help take edge off if that's all that's available, even Advil. (2) quick hydration - guzzle 12 oz+ of water (3) quick protein - a spoonful of peanut butter, piece of chicken, cheese, clif bar. If I can do those 3 things as soon as I start feeling fuzzy or seeing that aura sparkle I can sometimes head it off completely, and the event is much shorter. AND it gives me control which reduces the panic/stress of the migraine event as a whole. These are things you can prepare - have a kit in the car, a kit in your backpack.

YMMV.
posted by nkknkk at 6:00 AM on October 31, 2019 [2 favorites]

I personally have a history with Migraines that goes back twenty years and finally started Botox medicinal. Those issues you relayed sound like some aura migraines which can be very debilitating in terms of pain level and loss of sensory perception but more so because you never know how often the migraines will come or how long they last. Personally Triptans dont work on Aura migraines and magnesium can make some people constipated for relief from migraines levels to build up. If you may be a person with other medical issues at all or history be as honest as you can so you can get the best medicine and treatment possible. Sometime dietary factors, sinus issues, insomnia, anxiety, depression, even menstrual cycles or hormone imbalances can cause or worsen migraine attacks. For instance, theres a migraine in every banana I eat but not banana bread brownies. Go figure. I wish you the best of luck.
posted by The_imp_inimpossible at 1:34 PM on October 31, 2019

Following on from nkknkk’s comments about what to do when a migraine hits, I have found that I get salt cravings when a migraine is looming, and that giving into them can help enormously. (Usually it ends up being McDonalds fries, which isn’t ideal, but it often works - I’ve been thinking about carrying salt tablets instead). There is some evidence that the body uses salt differently during a migraine, so the salt craving is probably biologically based.

Also a lot of people have mentioned constipation. Migraine can actually affect gut motility directly - our enteric system is basically a ‘second brain’ full of neurons which can get caught up in the migraine process. I have found that my gut basically stops moving entirely before/during a migraine, which also means that oral medication takes longer to work than usual. For me, food, water and coffee can help to move things along (I crave salt, fat and carbs), but I know some folks get too nauseous to be able to eat or drink at all.

Basically, try to identify any cravings you have during migraines and see whether intentionally acting on them helps at all.
posted by embrangled at 4:25 PM on October 31, 2019 [1 favorite]

My migraine symptoms are different than yours, but boy howdy are they debilitating. It took a few months of doing a really detailed food diary to figure out my food triggers, and am diligent about avoiding them. Some of them (chili peppers, blue cheese) were immediate, and some didn't trigger a migraine until the next day (soy). I like the MySymptoms app. Some people do an elimination diet and then slowly add things back in.

Also definitely keep going back to the doctor and trying more and more drugs. Be a squeaky wheel. I recently had an awful migraine that lasted 48 hours and I was soooo nauseated, and my doctor gave me Zofran, which is just an anti-nausea medication, but it cleared up all my symptoms within an hour. It was the first abortive med that didn't make me feel drugged out. If you "fail" several medications then you should be eligible for botox - it didn't work for me, but I know it's helped a lot of people.
posted by radioamy at 9:53 PM on November 2, 2019