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Living with Migraine

Sleep schedule out of whack

  • By Stacey A.

    Just to give a brief background, I am new to chronic, complex migraines – I’ve had them consistently for over a year, averaging 3-5 migraines a week. Right now I’m on Buspirone 15mg for anxiety, Sumatriptan 100mg for the migraine and Promethazine 25mg for nausea. I have been on Lexapro in the past, but was taken off of it because of consistent trembling and weight gain. I’ve really been struggling hard with all of this, though some days are easier than others – the new prescriptions that I’ve never taken before and generally not knowing from one day to the next how I’m going to really be for the day gets me down. But, something has been happening that I’m not quite sure how to handle so any advice or tips would be great.

    I’ve only been taking the Sumatriptan and Buspirone since around June, the Promethazine I’ve taken for over a year, but I’m seeing a pattern emerging with my sleep patterns. Over the winter, I would go almost 24 hours before I would finally get some sleep (I was on the Lexapro then), which would put me at sleeping during the day, up at night. I would be this way for a couple of weeks, then find myself up again for 24 hours before I would go back to sleep and then I was back on a regular schedule, going to bed at 10pm and up around 5-6am. Then, up for 24 hours, back to being awake all night.

    The Buspirone has done some funny things to me, mostly that I would feel this enormous fatigue hit me mid-day for no reason (and no warning symptoms of an impending migraine), I would sleep until in the early evening hours and then once I took my evening dose, I would be up until 2-3am before I could finally lay down and sleep. I’ll admit that right now I am not taking my Buspirone, only because I am waiting for my doctor to decide if I can refill or not (she decided to refer me to a headache clinic without realizing I do not have insurance, I am not working right now, I’m fighting for my disability and I can’t afford the $315 first visit fee – that’s for the uninsured patients. A normal visit is $366 – aren’t they being generous.).

    The last five days I have not been on a worthy sleep schedule no matter how hard I try and yesterday (Wednesday), I woke up at 10am, stayed up for a couple of hours, went back to bed around noon and slept until around 8pm. It’s now after midnight and I am 100% wide awake, I’m contemplating sweeping my floors – they’re in desperate need of it.

    I can feel another sleep switch on the horizon where I’ll be the consummate night-owl (I will be tonight) and I have been wondering since I have been awake if I should just stop fighting the sleep switches and allow them to happen as they will. I try to force myself to sleep at night but I lay in bed looking at the ceiling and when I am awake during the day, it takes everything I have in me to get one thing done because the fatigue is so deep, the only relief is to sleep. Not to mention, sleep deprivation is a massive trigger for me, if I’m up for longer than 24 hours I will be in the emergency room because the migraine is so intense I can’t relieve the pain myself.

    I know I need to be on a decent sleep schedule, but I’m not entirely sure what to do. I can’t get to a neurologist yet, not until my disability approved because of the headache center wanted that much, how much is a neurologist going to want?

    Like I said, any advice or tips would be fantastic. I’m not sure what to do or what I can do.

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  • By Nancy Harris Bonk Moderator

    Hi Stacey,

    Welcome to the discussion forum and thank you so much for your questions. Let me see what I can do to help.

    Yes, as you know that sleep schedule is a problem. People with migraine need to maintain a regular sleep schedule, even on the weekends, because our brains are overly sensitive. We have a series on sleep tips that may be helpful, and won’t cost much if anything, let me share that with you; https://migraine.com/blog/migraine-triggers-sleep-1/
    https://migraine.com/blog/migraine-triggers-sleep-2/
    https://migraine.com/blog/migraine-triggers-more-sleep-rules-tips-and-tricks-part-3/
    https://migraine.com/blog/sleeping-tips/.

    Another helpful article is the Seven Essentials of Migraine Management. This discusses trigger identification and management, diagnosis, education and much more. Everyone with migraine should read this; https://migraine.com/infographic/migraine-management-seven-essentials/.

    Do you by chance take anything on a daily or near daily basis to help relieve your pain? The thing is if we take pain relievers, and/or migraine medications such as sumatriptan, whether they are over-the-counter or prescription, more than two to three day a week we run the risk of getting something called medication overuse headache or moh. Moh was formerly called rebound and if we are in an moh cycle our attacks will be more difficult to treat and we will end up in a daily cycle of pain that is hard to break. Here is information on moh; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    How about trigger identification and management? Do you know what any of your triggers are? Triggers can include but are not limited to certain foods, smells, smoking, alcohol, changes in the barometric pressure, fluctuating hormones, irregular sleep schedules, dehydration and many other things. If we can identify and avoid the ones we can, we may be able to reduce our attack frequency. Here is information on triggers; https://migraine.com/blog/migraine-management-essential-trigger-management/.

    Keeping a migraine diary is also an essential part of a migraine management regime. This will help us identify any patterns we may have and help us sort out our triggers. With all the apps out there it is easier than every to keep a migraine diary – and some of them are free, like the Migraine Meter https://migraine.com/migraine-meter/. If that isn’t what you are looking for try a Google search.

    I’m going to stop now, I’ve given you a lot to digest!

    Let me know if you have questions,
    Nancy

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  • By Stacey A.

    Thank you Nancy for replying – I will see what I can do to answer your questions. You have given me a lot to digest but knowledge is power in my opinion, so bring it on! 🙂

    First up – medications. I try very, very hard not to immediately grab anything to treat a migraine, to be honest I’ve never really been one to take anything for just a normal, simple headache – I’ve always been the kind to tough it out. I usually try to relax and calm myself down first, then sit and ascertain if I need anything more substantial than Excedrin Migraine. If I catch one early enough, sometimes the Excedrin will do the trick but if I feel a particularly nasty one coming, I will take my Sumatriptan – I only take the Promethazine if the nausea is worse than normal. Sometimes I am able to relax enough that I can slip to sleep and then sleep through the attack, but it doesn’t always work. I do admit that I sit on my triptans once I get the prescription refilled, my doctor only prescribes me 15 a month but I take half of one pill at onset, the other half two hours later and sometimes a half does the job. I do, however have at least one migraine a week that I have to take a full dose (both halves).

    Moh – I’ve heard about them and honestly, I don’t think I’ve experienced one yet because I am being exceedingly careful. I heard that are a completely different breed of pure evil when they happen and I don’t want to experience that in the least, I’ve got my own demon to contend with. Not to mention, I’m a little scared at taking the meds, I’ve never needed anything stronger than hydrocodone for a knee surgery and antidepressants, taking these new meds has been a little gunshy.

    Triggers – my biggest trigger right now is weather pattern shifts and where I live, we have seen a lot of different patterns this summer. It’s been exceedingly wet for a couple of weeks, then exceedingly hot and then right back to being wet – I think this is the wettest summer I’ve seen in a very long time to be honest. We are in a stretch of beautiful weather where there has been no humidity, mid to high 80s, not a cloud in the sky but we are shifting again – as I write this we have a small band of thunderstorms moving through the area. Other than that, sleep deprivation, loud noises, bright, flashing light and a few food triggers is all that I have discovered. I do smoke but have been cutting back and I’ve never been a drinker except for the occasional Michelob but that was stopped last year after the stroke. I have had a hormone shift within the last couple of years, I started my cycles at 14 but they were never regular until a couple of years ago and even though you can’t exactly set a watch to me, I am experiencing normal cycles (this month I have managed to skip my period – no chance of being pregnant). I probably don’t drink enough water for my body type, but I drink as much as I can, especially during an attack.

    I have kept a migraine journal since I was diagnosed in July of last year, I keep it updated religiously including new symptoms, new side effects from medications and questions I need answered. I have to say here, I am not seeing a neurologist at this time, my GP and CFNP are handling this because I am not working, do not have insurance and I cannot afford to pay the high fees. I am fighting for my disability and Medicaid, once I am approved I will be able to see a neurologist officially. I do have apps on my phone that I use religiously to track what I can (that includes medications I take and their dosages) but most migraine apps don’t work for what I need so I use a trusty pen and notebook. Everything is documented, when it started, how long, severity level, medications I took, possible associations, symptoms, menstrual cycle, stress level, food I ate, exercise, weather patterns and a small notations section where I can document anything new or any thoughts I may have about the migraine itself.

    I hope these help a little more, I have bookmarked everything you have given me and I will be taking notes as I read. Thank you again for replying – I do love this website, it’s my homepage for my browser no less! 🙂

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  • By Tammy Rome

    Stacey,

    My son has anxiety from OCD and was taking Busiperone for a few years. He had some of the same problems you are describing. Our headache specialist just happens to also be a psychiatrist. He switched him to Depakote as a daily migraine preventive. The doctor explained that Depakote also helps with anxiety and obsessive thinking, so it works for both problems.

    I don’t know if you’ve tried it yet or not. It might be something worth discussing with your doctor.

    Tammy

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  • By Tammy Rome

    Stacey,

    My son has anxiety from OCD and was taking Busiperone for a few years. He had some of the same problems you are describing. Our headache specialist just happens to also be a psychiatrist. He switched him to Depakote as a daily migraine preventive. The doctor explained that Depakote also helps with anxiety and obsessive thinking, so it works for both problems.

    I don’t know if you’ve tried it yet or not. It might be something worth discussing with your doctor.

    Tammy

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  • By Stacey A.

    Tammy

    This is the first time I’ve taken Buspirone and honestly, there are other side effects that I didn’t mention before now because I didn’t think them relevant. It’s doing wonders for my anxiety but there are times I will be doing something (quilting is one of them) and I will stop what I’m doing, blurt out ‘I don’t want to quilt anymore’ (we’re not talking about not wanting to quilt for the rest of the day, just not do it anymore at all) and then put everything away. I’ve done that with other things as well, that’s just the one that completely threw me off, I’m just now learning and I love doing it.

    I don’t see my doctor again until the end of September, I have a wedding in KC to attend and I will be leaving in just over a week, I wasn’t able to get an appointment scheduled before my trip. I will definitely put it on my list of things to discuss. I am getting despondent over the issue with my depression and anxiety though, I can’t take Lexapro because of the constant trembling I was experiencing and my doctor believed I have a sensitivity to it, put it on my allergies list and told me that my options may be limited because of the reaction. And truth be told, I do have a couple of other issues with her and was thinking seriously about finding another doctor but that’s for another discussion. Suffice it to say, she’s my best and only option right now and it worries me a great deal.

    Thanks, Tammy

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