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Living with Migraine

Migraine and sleep disorders

  • By Ellen Schnakenberg

    Cynthia, how did your day go? Were you able to finally fall asleep?

    I used to help run a sleep disorders forum. There are many ways to help us sleep better. Have you ever looked into some of these types of things yet? Have you had a sleep study done yet?

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  • By Elaine Gross

    In the middle of the night I’m waking, or semi-waking, in pain and seeing aura; my usual yellow patterns mixed with white slashes. I’m not totally with it so I’m not sure if this is real or a dream, but the pain feels real. These experiences are scary and disconcerting.

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  • By Ellen Schnakenberg

    My non-Migraine pain has been so bad lately I have been stuck in bed… Yet cannot sleep. This serves to trigger unwanted nasty Migraine beasties, causing more pain and less sleep. Anybody riding this same snowball down the hill?

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  • By melissadwyer13

    I have insomnia which just makes me have more migraines… last week I didn’t sleep from the time I woke up Sunday to Thursday night after my botox treatment!

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  • By Michelle

    The majority of my migraines either wake me up in the middle of the night or start as soon as my head hit the pillows. I have been tested for multiple diseases, MRI’s, Temporal Artery Biopsy, Nerve Blocks… I could go on. There are times I dread going to bed (like tonight) for fear of it starting all over again. The people I work with sometimes understand but the majority of them do not understand.

    I could vent in both this forum and the work place forum. I just need to let it out to people who will understand. My migraines have escalated over the last 4 years. I have had many different stressors. On the lighter side, I am a licensed massage therapist. I have used my field to relieve my stress and help with my migraines. I have several friends that are therapist. We exchange massages as much as we can. I love this part of my life.

    I do have another job other then massage. I have worked in a health care facility for 17 years. This is my full time job, steady income and benefits. Unfortunately they do not understand how migraines debilitate a person. Last night when I went to bed my head started to hurt. I did my best to relax. Finally I got up and took my maxalt. I was finally able to fall asleep. For this job they require you to call in at least 2 hours before your shift starts. I have FMLA for my migraines but I try my best not to wait till the absolutely last minute to call in. But at 4:50 am my head woke me up hurting. I was to be at work by 7am. I hoped that if I took my second maxalt that my head would stop like it had the night before.

    Unfortunately at 5:17 am it was still there. The gnawing ache to the whole right side of my head with the pulsating behind the right eye. I called work and the supervisor was not happy. She fussed about the time, which I explained that I was trying to take medicine to get rid of it. Then she threw in the guilt treatment. I felt horrible, but by this time the sensitivity to sound was kicking in. Thankfully my bedroom is very dark and cool and most importantly quite!

    I’m going to attempt going to bed now. I’m so thankful for this place to let out some of my frustrations. I may not make sense to most people but I feel better letting it out.

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  • By Ellen Schnakenberg

    Michelle, I am wondering, if you lay down and stay awake do you get a Migraine attack, or just when you fall asleep? Have you slept sitting up to see if a Migraine hits you?

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  • By Michelle

    Hi Ellen, I’m so sorry for the delay and responding. Sometimes they start as soon as I lay down to relax. More frequently they start while I am asleep. Yes I have slept sitting up in a chair before to help relieve the pain. They do no completely go away but they ease up enough to sleep. I have been through the gambit of remedies. Chiropractic, massage, dark and quite rooms and medicines.

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  • By Nancy Harris Bonk Moderator

    Hi, Have you had a sleep study done by any chance? I know I’m coming into the conversation late, but thought I would try and help. Please forgive me if you’ve already covered this; but do you try to maintain a regular sleep schedule? Going to bed at the same time every night, and waking at the same time every morning (even on weekends) is especially important for folks with migraines.

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  • By Ellen Schnakenberg

    Michelle – When a person has a postural (up/down) element to their headache pattern, there are a couple of things doctors will frequently check. One is your actual posture along with your spine and neck. The other is intracranial hypER or hypOtension. This means that the cerebral spinal fluid that surrounds your brain can be causing pressure, or that there isn’t enough to float the brain, and this causes pain. Have you had a lumbar puncture done yet? Here is some info on LP’s: https://migraine.com/blog/migraine-test-lumbar-puncture-or-spinal-tap/

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  • By Michelle

    Hi Nancy, Yes I have had a sleep study. I have a cpap machine. They also said that I don’t go into a deep sleep for long periods and I don’t stay in REM sleep for long.

    Ellen, I have had the LP and my pressures were normal. I appreciate all your advice. I have had numerous blood test as well. My labs show that I have inflammation but it is a non specific test.

    Thank you all for your info.

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  • By Ellen Schnakenberg

    Michelle – Do you know which inflammatory markers you have? Have they run an ANA or thyroid and antibody tests yet? Have they done a postural X-ray?

    Like you, I spend little time in REM which is a real trigger for me. The things that helped me may not be helpful for you though. I had to make some semi-drastic changes, and hubs has been along for the ride I’m afraid. Here are some helpful Migraine.com links to articles I’ve written about my own experience, tips and tricks etc:

    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/

    It takes some time for these tips and tricks to work – it doesn’t happen overnight. Patience is really important.

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  • By Michelle

    Thank you Ellen. I don’t know why my submissions keep saying anonymous. My ESR and CRP are chronically high. A normal CRP should be 0-3 and mine has been as high of 30. I have seen two Rheumatologist. One treated me for Temporal Arteritis. My biopsy came back negative but he was convinced I had this. after almost a year on steroids with no other treatments offered I sought out a second opinion. It is highly unlikely I have this seeing as the test came back negative and I’m way too young. Mostly this affects Elderly patients.

    The second Rheumatologist tested me for ANA but it came back negative. She also did an serum electrophoresis test.It came back negative as well. I work at a hospital so I am able to look at the test results and understand. I am not giving up yet. Just gathering more information. I strongly believe there is a connection some where between these levels being high and my migraines.

    I will definitely look over your blogs. And I am very thankful for all the efforts, advice and most importantly support you are given.

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  • By Ellen Schnakenberg

    Michelle – It was an ANA I had hoped you had. Negative doesn’t necessarily mean that you don’t have autoimmunity going on, but it is less likely. Have you had your thyroid levels tested and do you know your numbers? Autoimmune thyroid disease doesn’t always show up on an ANA and can cause inflammatory markers to be elevated. Of course it could be something entirely different too, but those are a couple things to keep in the back of your mind anyway. Temporal arteritis usually has pretty easily identifiable symptoms and reacts well to steroids, so it does sound like that might have been a dead end. I’m so sorry. I know this can be such a struggle. BTDT I’m afraid.

    The anonymous name on your posts: it may be because you joined through Facebook and there may be issues that way – we’re trying to figure that out right now. You might try logging onto the site normally and trying to fix it that way. If you do, please let me know so we can tell others what to do to be helpful too 🙂

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  • By Michelle

    Ellen, Yes I hoped too that it would be ANA. My medical doctor would more then likely agree. After having a 5 day migraine I went to her office asking her to just shave my head off. She said wouldn’t do that but since no one else had done the Lumbar Puncture she would study up and order what she could. So she literally went into her little room, shut the door and got out her medical books then called the lab to confirm the right test she wanted ordered. She has been very supportive and helpful.

    I’m afraid I don’t know what you meant by BTDT? You talked about the steroids, they do help sometimes. But being overweight and trying to deal with trying to loose steroids kill!!! I gained about 30 pounds when I was on them for long term. I would still have break through migraines with them. When I had my five day migraine my MD gave me a short high dose which seemed to do the trick. I also gained back 10 lbs of the 30 that I had finally lost.

    I am up late tonight because of one starting. To put the worries and stress of my day away I will read before going to bed sometimes. Or I should say to sleep. I read your list of triggers and I could understand how those may be connected at times. One thing you said was not to fall asleep with a tv on. That a bed is for sleep and sex. That much is very true. But as crazy as this sounds, as long as I keep my brain distracted I don’t notice the pain. I can read with just a soft light on and usually go right to sleep. But off and on today I was getting little nudges of one. I took my meds and luckily made it through my work day. But tonight it seems to just be like a nagging tooth ache taking my temporal lobe and squeezing it. It is better now that I am up and using this site as a distraction. Unfortunately it is going to be hard working tomorrow on little sleep again. I know what some of the triggers are for this one at least, weather, hormonal and just a little stress.

    Now as for the logging in. I did log in through here. Have to love the world of computers and software. One little glitch messes everything up. Just as long as you know who’s talking I’m fine. 🙂 Thanks again for your advice and your shoulder. It is always nice knowing that there is someone out there that genuinely understands.

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  • By Ellen Schnakenberg

    *oops* sorry Michelle – an ANA is a test. It looks for autoimmunity which is a major cause of inflammation. BTDT means Been There Done That.

    Like you, I have to keep my brain distracted, so the one I break the most is going to sleep with the TV on. I have tinnitus – constant ringing in the ears. It makes going to bed and sleeping really tough. So, sometimes I do go to bed with the TV on. I am far from a perfect person. I have a kindle and tried to read at night to that, but I guess I need a backlit Paper White. My eyesight is too poor for reading real books anymore. 🙁 That was one of my greatest joys and I sure do miss it. Distraction is very important for me and dealing with my pain. I hear you there too. Have you tried turning on an audio book or a radio? These often work for me.

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  • By Michelle

    Hi Ellen, I’m sorry it has taken awhile to respond. I have tinnitus as well, I don’t sleep with a TV on but I do sleep with a fan on. For years I worked night shift so to block out the noises from outside noise I would turn a fan on. Now I have to have it to sleep.

    Sometimes I just feel like I’m crazy. I have had an ache off and on all weekend. After the week I had I know why. But it seems I’m more aware when I am at rest. Like now! It really does help to read you and everyones articles here. I know that I have support. Thanks again for all your advice and help.

    Michelle

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  • By Ellen Schnakenberg

    Sending you gentle ((Hugs)) Michelle. It’s good that you found a way to get through your issues with tinnitus. Hopefully someone else will read what you’ve done and find it helpful too.

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  • By Michelle

    Thanks Ellen, I appreciate the hugs. Throwing this out for anyone else that may need it. There is a machine that produces white noise. It is light subtle noises for distracting. They play ocean waves, wind, rain, streams…. all would be good. They are natural sounds but not distracting. I’m a country girl, so I love the sound of rain on a tin roof.

    Thanks again and hugs back to you.

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  • By Ellen Schnakenberg

    Michelle – all good things. I have tried them while in hotels. Certain noises are helpful. Others – well, not so much. I too am a country girl, but the sound of rain makes me wide awake and ready to run to the barn to bring the horses in, lol!

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  • By Michelle

    lol Ellen, yeah that wouldn’t be a good thing!

    Well, I am home from work yet again. This week has been the worst in a very long time. Friday was the only day I felt some what normal. That was until I stretched before going to bed… lol You know when you are getting up to go to bed, you do that yawn and stretch?? Well last night as soon as I stretched I had a stabbing pain in my right temple. Sort of like a muscle spasm. I relaxed and did some deep breathing which brought it down some but not all the way.

    I took some meds, went to bed and tried to relax. Ironically as long as I held my head in my hands it softened the ache. But the minute I took my hands off it started back again. I layed every which way I could, finally I drifted off for a couple of hours. Then as I woke the pain was back. So not only did I miss work but I missed saying good bye to someone I worked with for many years. I called her crying telling her I was sorry. My supervisor sat and talked with me for awhile.

    I work for a small hospital. We all pretty much know each other. The other night I went to the ER when the pain wouldn’t go away. I truly felt like a drug seeker. The Dr. is some what new and this was the first time I met her. I told my supervisor this morning that I wouldn’t come back the ER. After the DR. gave me her usual cocktail for migraine (Toradol, Reglan and Benadryl) and a liter of fluids I told her I was better but that it wasn’t completely gone. She looked at me and said “Well, just go home and take your Maxalt. I have given you everything I can.” I never asked for anything, even when one of the nurses asked me if I wanted something, I said it is getting better let me see if the rest of the fluids make me feel better. Granted she didn’t know me and I looked a little rough. I felt like she judged me from the get go.

    Sorry I needed to vent a little. I am tired and I would so love to be able to lay down and get a good nights rest.

    Thank you Ellen in advance… I know you will respond with hugs!

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  • By Ellen Schnakenberg

    ((((Michelle)))) Oh my. It is bad enough to have a negative experience when you’re not a health care professional. I hope you are feeling a little better while reading this <3

    Have you ever tried working with your doctor to create a plan for the next time you may need to see help in the ED? Emergency care staff simply are not well equipped or educated in how they should treat Migraineurs. They try to treat the pain, which is better than nothing, but neglect to try to abort the attack in the first place. That is truly what we need in that situation.

    Here are a few tips and tricks that are probably review for you, but may be helpful for other patients who see themselves in your story: https://migraine.com/blog/tips-and-tricks-for-a-successful-emergency-department-visit/

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  • By Michelle

    Thank you Ellen, I do feel better. I have the sort of fuzzy ache going on. A little distracting while trying to fall asleep. I am seeing my specialist on Monday. I will keep all of this in mind. More then likely I will write down before I go what I need to ask.

    I found one of the things you said interesting. About how to dress… It is true and I’m sure the other night I put on the right outfit for not being taken seriously. See I get to the point when I want my hair out of my face. Since I haven’t been able to wear any of my pretty headbands for years now I took to wearing bandannas. lol I ended up wearing the closet one to me, of course it has peace, love and rock n roll all over it! I had bought it to wear while volunteering in the hot July heat. And needless to say I grabbed whatever shirt was comfy, my black Harley tshirt I bought on vacation. lol That Dr. had never met me… the rest of the staff knew me well enough. But at that point I just needed relief.

    I appreciate everyone here and all of your articles. They have been a great resource for myself and others I am sure.

    ((Ellen)) Thanks again!

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  • By Ellen Schnakenberg

    ((Michelle)) – It might be a good idea for you to put together a bag of clothes etc so the next time this happens, you can grab it, get appropriately dressed, and go. You might be shocked what a difference it can make!

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  • By rilniski

    I take Elavil and try to maintain a sleep schedule going to bed at the same time each night. During my work week I wake up at the same time every morning. I try to keep it the same on the weekends also.

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  • By Ellen Schnakenberg

    rilniski – Brilliant! I’m so glad to see that you’re doing what is difficult – keeping a regular schedule and resisting the temptation to relax and sleep in when the time affords you. This is one of the keys to eliminating sleep issues as a trigger. 🙂

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  • By Michelle

    Thanks Ellen. I’m definitely more conscious about how I appear. I too take Elavil at night. This past Monday morning I had a severe attack that woke me up. I have been aching since last Friday but Monday was the worst. I have taken all my meds sparingly as not to give a medication rebound headache to myself. But here I am almost time to go to bed and I’m tired but I’m also scared. Crazy as it sounds,to have anxiety about going to bed. I guess it doesn’t help matters trying to find a new neurologist that I like and trust. I fell like she listened to me. She had a family medical issue and left the office I was seeing her at.She doesn’t think she will be up and ready till March.

    Sorry I just needed to whine a little bit. After hurting for so many days in a row it helps having people understand. The waves of pain come and go like tides on a beach. I’m going to attempt bed. I need to work in the morning. Say a prayer.

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  • By Michelle

    Hi Ellen, I slept great!! Thank you Lord for answered prayers. I have taken benadryl in the past for sleep. I didn’t have any last night. I went to work today, can’t say I felt the greatest for the most of the day. I fought it all morning. I was super busy at work which helped me keep distracted. When they asked if I wanted to leave a couple hours early I jumped at the chance.

    I’m counting down the days till February when I meet with a new neurologist. I will be sure to have my list of things to ask and talk about. Poor doctor… it befuddles them sometimes when you go in with your list! But it also makes a statement. Your serious about finding relief.

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  • By Ellen Schnakenberg

    Kim – I’m so glad! It sounds like you’re doing a great job of keeping your spirits up while you wait patiently for your appointment. Sometimes it’s helpful to introduce yourself to the doctor and let them know that you are a proactive patient who is wanting a doctor to partner with for better management. That you will ask a lot of questions, but please don’t take offense because they are just so you can learn and be a better patient. Hopefully your new neuro will understand and be supportive of your decision to be one of his/her most proactive patients ever!

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  • By MsMillie

    Ahh… I went to bed about 1.5 hours later than I should last night.. and woke up with a migraine that got worse through the afternoon. I ended up leaving work early again. Sigh. I guess it was my own fault. I am not too good about going to bed on time and getting up on time.

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  • By Ellen Schnakenberg

    MsMillie – Remember, you didn’t ask for Migraine. You might have goofed and triggered the attack, but you will think twice next time, and hopefully miss out on the next one! This is a journey and a learning process for all of us. Hang in there!

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  • By aviatorjj

    I used to wake up between 4-6 am with a migraine every few nights. Then my doctor put me on Lithum and it worked like magic but I couldn’t sleep at all. I went off the Lithum and started the bc pill and my migraines are only every 10-15 days! HOWEVER, I am still waking up at 5 ish am. So my doc put me on Seroquel to help me sleep. It worked for two months and now I’m back to waking up around 5. And I don’t sleep soundly. It feels like I just toss and turn all night.

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  • By aviatorjj

    Oops I hit enter too soon. Could I have sleep problems from the Lithum or more from something migraine related? Which ever it driving me crazy! I’m so tired ALL of the time. Ugh!

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