Hope Me, Migraine Edition
January 13, 2022 8:07 AM Subscribe
I have suffered from chronic migraines for seven years. I am on a daily oral preventative, a monthly injectable, I have an abortive medication and as needed medications for the side effects. I have had a migraine since Sunday night, my neurologist prescribed a six day course of steroids to break the migraine. I’m on day two of the steroid and I have had no relief. Questions about how to stay positive, be resilient, and advocate for yourself when your brain is not working.
I have been unable to work because of the severity of the migraine and I am just miserable. I am exhausted, painful and loosing hope. I have never had a migraine of this intensity last this long. I am doing my best to hydrate, eat safe foods, and rest. I take my medications and I’ve ice my head and neck. I am concerned about missing work. I recently started a new job, and out paid time off is less than generous, and I haven’t accumulated much. I messaged my neurologist this morning to let her know I have had no improvement with the steroid and am really struggling with the pain, nausea, and light sensitivity. My partner and I are temporarily living in different states for work, so I have gone to stay with my parents. But my self esteem has really taken a hit because I feel like I can’t be independent right now.
I am looking for advice on maintaining a positive mental attitude during this challenging episode from other migraine sufferers. How do you over come the sense of dread that this will never end? How do you stay positive and resilient? How do you best advocate for yourself with your medical team and at work?
I have been unable to work because of the severity of the migraine and I am just miserable. I am exhausted, painful and loosing hope. I have never had a migraine of this intensity last this long. I am doing my best to hydrate, eat safe foods, and rest. I take my medications and I’ve ice my head and neck. I am concerned about missing work. I recently started a new job, and out paid time off is less than generous, and I haven’t accumulated much. I messaged my neurologist this morning to let her know I have had no improvement with the steroid and am really struggling with the pain, nausea, and light sensitivity. My partner and I are temporarily living in different states for work, so I have gone to stay with my parents. But my self esteem has really taken a hit because I feel like I can’t be independent right now.
I am looking for advice on maintaining a positive mental attitude during this challenging episode from other migraine sufferers. How do you over come the sense of dread that this will never end? How do you stay positive and resilient? How do you best advocate for yourself with your medical team and at work?
Side question to your question - have you been tested for Covid? That can include headache as part of the symptoms, and if you are already inclined to migraines it is something to consider as a complicating factor (ask me how I know, sigh).
posted by gudrun at 9:44 AM on January 13, 2022 [4 favorites]
posted by gudrun at 9:44 AM on January 13, 2022 [4 favorites]
I have had chronic migraine for ten years.
Yes, some attacks feel unrelenting.
But they do relent.
The pain itself makes you feel hopeless, and the migraine process itself can really screw with your brain chemistry.
In terms of practical help, it sounds like you're on medication already for your brainbender (that's my word for the really killer flares).
If you have the following items handy, your parents can mix up a hydration solution for you to sip: 1/2 tsp salt, 2 tb sugar, 1/2 tsp jello gelatin mix (optional), 2 cups water. Especially important if you're vomiting.
Once the attack ceases, set up an appointment with your neurologist. If your condition has changed (new symptoms, changed in length of attack/severity) it may be time for an MRI.
I'm so sorry you're going through this.
posted by champers at 9:52 AM on January 13, 2022 [3 favorites]
Yes, some attacks feel unrelenting.
But they do relent.
The pain itself makes you feel hopeless, and the migraine process itself can really screw with your brain chemistry.
In terms of practical help, it sounds like you're on medication already for your brainbender (that's my word for the really killer flares).
If you have the following items handy, your parents can mix up a hydration solution for you to sip: 1/2 tsp salt, 2 tb sugar, 1/2 tsp jello gelatin mix (optional), 2 cups water. Especially important if you're vomiting.
Once the attack ceases, set up an appointment with your neurologist. If your condition has changed (new symptoms, changed in length of attack/severity) it may be time for an MRI.
I'm so sorry you're going through this.
posted by champers at 9:52 AM on January 13, 2022 [3 favorites]
I'm so sorry this is happening. Have you tried Botox? It was literally developed for migraines (the wrinkle reduction was a side effect) and it might be worth going out of pocket just to see if it helps. Good luck!
posted by cyndigo at 10:12 AM on January 13, 2022 [4 favorites]
posted by cyndigo at 10:12 AM on January 13, 2022 [4 favorites]
In terms of advocating for yourself, don’t be afraid to get your parents involved in talking with the doctor if this makes sense given their capabilities and your relationship. You mentioned feeling dependent, but it is ok for people to help take care of you.
At work, the key thing is to communicate as much and as clearly as possible. I would try to communicate: 1) this is highly unusual for you, 2) you are actively working with your doctor to get it under control, and 3) you’re really looking forward to feeling better and getting back to work. Daily updates are key, depending on your work and role am and pm updates might make sense. Do not have your parents involved in this! Knowing how specific to be with your boss regarding ongoing treatment is a bit of a challenge - you want to be specific enough that it is clear you’re not just waiting around with a boo boo, but not so specific that you’re reviewing dosages with them. I would go at the level of “my doctor has given me a new med and I should know by tomorrow if it’s working.” You could argue that they don’t require this level of information and that is technically true, but your goal is to demonstrate a good faith effort to be work-ready and active steps to do so. I’m giving this advice as a mid-level manager in a professional context - if you work in a really different context or your boss seems like a jerk it may be appropriate to be more vague.
posted by jeoc at 11:48 AM on January 13, 2022
At work, the key thing is to communicate as much and as clearly as possible. I would try to communicate: 1) this is highly unusual for you, 2) you are actively working with your doctor to get it under control, and 3) you’re really looking forward to feeling better and getting back to work. Daily updates are key, depending on your work and role am and pm updates might make sense. Do not have your parents involved in this! Knowing how specific to be with your boss regarding ongoing treatment is a bit of a challenge - you want to be specific enough that it is clear you’re not just waiting around with a boo boo, but not so specific that you’re reviewing dosages with them. I would go at the level of “my doctor has given me a new med and I should know by tomorrow if it’s working.” You could argue that they don’t require this level of information and that is technically true, but your goal is to demonstrate a good faith effort to be work-ready and active steps to do so. I’m giving this advice as a mid-level manager in a professional context - if you work in a really different context or your boss seems like a jerk it may be appropriate to be more vague.
posted by jeoc at 11:48 AM on January 13, 2022
I’m very similar to you. I’m going to start trying the curable app. And I have also added small amounts of medicinal cannabis. I dislike cannabis but after 2019 and the summer of 2021 was one long intractable headache I felt I needed to use every possible available option to make my life better. I’ve only used a minute amount since I started a prescription and only at night but it banishes tension headaches that used to turn into migraines and on my second day of a migraine I make sure to take some before sleep and I think it helps. Finally the last time I used steroids and it didn’t help it was because my head was locked in my axis- or something like that- and a chiro appointment relieved the occipital pain. The steroids had helped though, but I had remaining occipital pain. I send the biggest hugs ever. I feel you and this question so so much!
posted by pairofshades at 12:41 PM on January 13, 2022
posted by pairofshades at 12:41 PM on January 13, 2022
Like you, I get a lot of anxiety when I get a migraine. The combination of missing work and feeling like it's never going to end ramps up my anxiety, which probably makes my migraine worse. Is there anything you can do to mitigate the anxiety? I often take a smidge of clonazapem (Klonapin), which is an anti-anxiety/muscle relaxant, which takes the edge off things.
posted by radioamy at 2:11 PM on January 13, 2022
posted by radioamy at 2:11 PM on January 13, 2022
i have cervicogenic migraine which might not be your same flavor.
three times in my life, I've done a walk in to my pcp. she will provide a stadol injection in the office. i have to wait around for 30 minutes and have a ride home.
it's enough for some sleep. on preview i see torodol advised upthread. I've had that too.
a) it *will* pass
b) neuro, sooner than later
c) ice on the back of the neck, long enough to calm nerves can minimize thiings.
d) seconding an advocate accompany you
posted by j_curiouser at 2:12 PM on January 13, 2022 [2 favorites]
three times in my life, I've done a walk in to my pcp. she will provide a stadol injection in the office. i have to wait around for 30 minutes and have a ride home.
it's enough for some sleep. on preview i see torodol advised upthread. I've had that too.
a) it *will* pass
b) neuro, sooner than later
c) ice on the back of the neck, long enough to calm nerves can minimize thiings.
d) seconding an advocate accompany you
posted by j_curiouser at 2:12 PM on January 13, 2022 [2 favorites]
Fellow chronic migraineur, but never that bad. Poor you! However, depression is a side effect for me, and the kind of dis-coordination that has me making coffee, turning it on, and leaving the pot on the counter.
A friend of my sister has cluster headaches and an oxygen tank for when they hit. He's the only person I've heard of that uses one. Maybe ask your neurologist?
Best wishes.
posted by Enid Lareg at 9:50 PM on January 13, 2022 [1 favorite]
A friend of my sister has cluster headaches and an oxygen tank for when they hit. He's the only person I've heard of that uses one. Maybe ask your neurologist?
Best wishes.
posted by Enid Lareg at 9:50 PM on January 13, 2022 [1 favorite]
This may be too simplistic, but after my last 7 day migraine, my doctor recommended taking 400 mcg of magnesium glycinate every day. I split it up and take 200 in the morning and 200 in the evening and the difference in the occurrence of migraines has been remarkable. I hope you are feeling better very soon.
posted by poppunkcat at 10:04 AM on January 14, 2022
posted by poppunkcat at 10:04 AM on January 14, 2022
Response by poster: Thanks for the supports. I got a PCR of data #2 of the migraine as was COVID negative. I have been icing my forehead and neck, and I already take magnesium along with my daily preventative.
My neurologist advised me to go the ER this morning where I got fluids, Benadryl, Reglan, and Tordaol. My pain decreased from a 7 to a 5, but about 12 hours later I am still suffering. I’m happy to see a small improvement but I am still pretty impaired. I feel pretty hopeless and frustrated. The ER advised me to rest, hydrate, and take Benadryl and finish the steroid. I do not have to be back to work until Tuesday, so I have some days to continue rest. I just feel like I can’t go on being in pain like this for much longer and I don’t know what else to do to get relief.
posted by OsoMeaty at 6:22 PM on January 14, 2022 [1 favorite]
My neurologist advised me to go the ER this morning where I got fluids, Benadryl, Reglan, and Tordaol. My pain decreased from a 7 to a 5, but about 12 hours later I am still suffering. I’m happy to see a small improvement but I am still pretty impaired. I feel pretty hopeless and frustrated. The ER advised me to rest, hydrate, and take Benadryl and finish the steroid. I do not have to be back to work until Tuesday, so I have some days to continue rest. I just feel like I can’t go on being in pain like this for much longer and I don’t know what else to do to get relief.
posted by OsoMeaty at 6:22 PM on January 14, 2022 [1 favorite]
Migraines are debilitating more so in that they are unpredictable and can never be reduced to a workable intensity. Something in your day to day life is causing the migraine to intensify or lengthen. Maybe its having windows that face sunrise/sunset. Or the yellow paint in the room with florescent bulbs. Something of scant significance usually or a dietary restriction usually. Try talking to your primary about supplements that minimize headaches. Sunlight is helpful during migraine free days but not days you have a migraine. Do you live in high altitudes? Maybe you have an oxygen imbalance. Do you work out? Increasing your blood flow could change your pain threshold. Lots of small changes or just one big change could make all the difference but you should first find out what exacerbates your migraines or brings them on.
posted by The_imp_inimpossible at 3:54 AM on January 15, 2022 [2 favorites]
posted by The_imp_inimpossible at 3:54 AM on January 15, 2022 [2 favorites]
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posted by bookworm4125 at 9:39 AM on January 13, 2022