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Living with Migraine

Living with Migraine

  • By saltlakesam

    I’ve been keeping a diary of weather related headaches. Here in Salt Lake where to me it is windier than any place I have been, we hve 2 storms rolling through today and saturday. Winds are about 30 miles with big gusts, the cats are freaked out and my head aches. For the big storms with large pressure changes – which high winds indicate – this year I have had headaches. For me there is a correlation. More here:
    http://www.cnn.com/2011/HEALTH/02/15/conditions.predict.weather/

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  • By Ellen Schnakenberg

    Many people find that their Migraine attacks follow weather patterns. Sometimes it’s difficult to actually predict because there can be multiple factors involved, but I hear this all the time it seems. For myself, I never saw a correlation, and neither did my headache specialist. However, after subscribing to a weather/health alert service, I found that they did seem to coincide with the Heart Disease warnings. I’m not sure exactly what this means for me, but it has been somewhat helpful. Now if I could just predict them a week ahead of time to give me a chance to pre-medicate and plan my week! 🙂

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  • By Teri Robert

    Sam,

    Weather changes are a major trigger for me too. Thankfully, I’ve found that my preventive meds protect me from that trigger many times. Not always, but more often than not.

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  • By Kay

    I got injured on 2/13/2011 at work and since then Ive been getting migraine
    headaches. I seen the neurologist last week and he prescribed me Elavil, ive been prescribed other medications and none as worked, does any medications work for you? Or have you excausted all medications? Is there anything that has helped you? Nothing has seemed to work so im looking for some insight on things, and please tell me how long you have been dealing with migraines. They cannot find anything wrong on CT’s or MRI’s and im just at a loss i don’t know what to do.

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  • By Ellen Schnakenberg

    Kay, there are literally hundreds of medications and combinations of medications that may help you. It’s nearly impossible to exhaust all options. Are you seeing a Headache Specialist?

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  • By Rachel Z

    Kay, there are some people, like myself, who have refractory migraines, or migraines that don’t respond well to any preventative or abortive medications. That said, I am in the minority and it is way to early for you to assume nothing will work. In addition, you may try biofeedback, acupuncture, botox and a wbole host of other non-medicinal therapies. Many vitamins that most people would not normally take may also help your migraines. Also as mentioned above, you need to see a migraine specialist, if you aren’t already, not just a general neurologist.

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  • By DivanDiva

    I am excited to share something that worked for me last night – I will try it again. I thought if I could watch a massage instruction video – (non x-rated) I might be able to relax into it. I found lots of youtube videos such as this one:
    http://www.youtube.com/watch?v=Wod3_SCCong and http://www.youtube.com/watch?v=QEU4n02EaJk&feature=related. I am trying to step away from side effects which means using more non drug therapies.

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  • By Ellen Schnakenberg

    DivanDiva – I tried massage for a time. It took a while to see a difference, but weekly treatments really did make me feel better overall. I think if you can find a way to make yourself better in any way shape or form, it’s a good thing. Massage is known to have health benefits. I hope you’ll keep coming back and let us know how it works 🙂

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  • By kittykelly321

    I’m looking for input about what type of pillow people are using. I’m thinking about getting a new one, but with my migraines, I think I should get one that will help, or at least not make them worse.
    So, does anyone know of a pillow that gives good support but dissapates heat?

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  • By Ellen Schnakenberg

    kittykelly321 – I wish I could tell you that a pillow made a lot of difference for me. At one point I had to sleep sitting up for about 3 years. During that time I used one of those horse-shoe shaped neck pillows and it did a good job of supporting my head and neck while in that position. I found it not necessary while flat though. I have a couple different pillows I use that help me depending on the circumstances and the amount of neck or back pain I might be having too. I also bought a Chillow that I hope to video tape and review for everybody soon. I haven’t used it yet, but because I have trouble with hot flashes related to meds I’m taking, I’m hoping that it might be helpful. *fingers crossed*

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  • By Vicky

    Hi, I’m glad I found this as I’ve been searching for a support group or people who have been living with migraine/headaches like me. I’m beginning to feel very frustrated with living in constant pain. I’ve had a combination of migraine attacks and tension headaches for most days of the month. Am thankful for the day when I don’t feel pain. Any advice on what else I can do to stop the pain?

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  • By bluebird

    Dear Folks,
    In addition to having severe Chronic Daily Migraine, I also have to use a CPAP machine for apnea. The challenge of finding a pillow that stabilizes my head so I can keep the mask on…and finding a mask and headgear that doesn’t drive my sensitized skin and scalp to acts of petty vandalism…has been a real challenge. I find a small neck roll filled with some husks from the organic store..works the best for sleep. Cozy soft things to cling to for comfort and solid support to prop up back & legs get tossed aside when I settle down to sleep …neck roll… mask and melatonin.
    andrea

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  • By Ellen Schnakenberg

    Bluebird – All great things, and some awesome advice to boot 🙂 I’m glad you’ve found something that is helpful to you. Here’s hoping others will read this and find it helpful too…

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  • By Julie

    I have had a really hard time through the years finding a pillow. Why should a pillow be such a big ordeal. But it is. It makes such a major difference in how we feel when we get up and how our necks feel which in turn travels up to our head and how our migraines respond. After all neck pain and the degree of neck pain will dictate to a certain degree the severity of our migraine pain. I know for a fact it does for me. The past 3 years alone I have gone through 11 pillows! I kid you not. They might feel fine for maybe the first week or so and then in the middle of the night out of frustration I will toss them to the floor and reach for another one! I need something that will support my neck and keep it in line and cradle my head. I sleep on my right side. I cannot sleep on my left side. No way can I sleep on my back or my stomach. It has to be on my right side. Period. I’ve tried memory foam. Water filled. I felt like I was sloshing around on a boat-that one took some effort to throw on the floor as it was a little heavier. I tried a chiropractic pillow that was hollow in the middle-that annoyed me. I’ve tried firm and it felt like my head was going up on an angle. I tried soft and it felt like my head was sinking downwards and I had a kink in my neck. I tried a medium fill and it didn’t support my neck like the soft. I tried down filled, synthetic. I hate pillows. Then I saw on Amazon this goofy looking thing called a dogbone pillow. No, it’s not for your dog it’s for people, but it’s shaped like a dogbone and it’s to give your neck support and I though “why not I’ve tried everything else why not give it a try”. So I ordered it. I’m suppose to get it tomorrow so we’ll see how that goes. But i’ve also tried those 1/2 circle pillows also. Bah! Pillows should not be that hard to find so I ask, is anyone having as hard a time as I am finding the right pillow or is it just me???? Why am I so difficult? This chronic pain in my neck is driving me nuts and making it so hard to find the right pillow to support it and keep it as pain free as I can. I’m discouraged.

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  • By Julie

    If you have an iPod or iphone you can download a free app called a barameter, I think mines called an antique barameter, and it will find your location by GPS and will give you the barometric pressure along with the current temp. I find mine are related to drastic changes when the pressure goes up then drops. And in the menu it will keep a record of it for 5 days. I started adding that to my migraine diary. There is also another free app My pain diary that will record the pressure and your pain with the weather and you chart it day to day and it will make a graph for you. But you have to do it daily or it’s of no use. Sometimes I slack and don’t do it daily. I have to become more disiplined and do my diary and the technology makes it easier so there should be no excuses so I’m not sure what is wrong with me as to why I’ve been slacking. But there are a lot of good tools that you can use on your phone, ipod and tablet-you don’t have to use a pen and paper anymore. As for gadgets I just recently got one that works on my tender pressure points around the outside of my eyes and temple areas called Breo Breeze ISee 371 Digital Eye & Temple Massager. It inflates gently w/air pressure and heat then deflates slowly then repeats. It can also massage at the same time if you want. I choose not to. You can set the timer for 5, 10 or 15 min. It has a built in MP3 player that plays soothing sounds and comes w/ear plugs but to use that you’d have to run it on batteries as the unit comes w/an AC adapter and the plug in uses the same outlet as the plug in for the ear plugs, so I use my own MP3 player if I wish to play soothing sounds. The only drawback is that unit that controls the device is a little noisy so you would need to hold it away from you, but when you snug up the eye mask around your face it puts the right amount of pressure on my tender spots around my eyebrow and temple area and afterwards it feels much better. I use it once or twice a day. I think it helps with my pressure points in that area.

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  • By 2mnyheadaches

    I have had migraines since I was 16 years old, but over the past 2 years I have been experiencing chronic migraines. I have tried 2 different preventative medications and several different abortive medications. The migraines have caused me to miss work and have basically quit doing a lot of other activities because I don’t feel good most of the time. Some daays I feel like fighting and searching for a cure while other days I feel like just giving in and accepting the pain.

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  • By Ellen Schnakenberg

    2mnyheadaches = Hang in there! Every day we pray for something new that will help us, and with each day we get a little closer. I know it’s hard to hang in there when the pain is especially bad, but it’s worth it 🙂

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  • By Sophie

    Hello everyone! I’m new here and had a question for anyone who could answer. I’ve had migraines since I was a child. I had them throughout my time in the military, they tried Imitrex and some other stuff and put me on a antidepressant. That worked like magic, I got off of it and didn’t have another serious migraine for years. Once I started having kids they came back and I had one very serious one when I was pregnant with my last (4th) child. I got through it though without medication. He is now 6 months old and I have been getting them more often, about two or three serious ones a month. The other’s I’m able to catch early, take regular pain meds or some Unisom and sleep it off. This last Sunday I woke up feeling a little tired, ate breakfast and within maybe an hour at the most, a migraine kicked in. It was the works with the light and sound sensitivity, the nausea and vomiting, and I had chills and cold sweats. It started to go away overnight and I felt a little better in the morning. I went down to the clinic and by the time I got there we had to shut off the lights in the room. It was by far the worst headache of my life, matched maybe by the one I had when I was pregnant. I was in tears and really just wanted them to knock me out. They did blood work in case it was something else (they have never treated me for migraines..I’ve lived here for 2yrs now)shot me up with triptans (not sure what kind)and phenegran and sent me home with antibiotics(for a separate infection) and anti-nausea meds. They said it was probably something viral like the flu (never had a fever), shingles (I had a small rash on my back), or a severe migraine episode. I spent all of Monday in bed and Tuesday I woke up feeling much better, though extremely groggy. My mind was foggy, I couldn’t find words when I was talking, I felt like I was mumbling, and I kept dropping things. Before too long, I noticed that only the right side of my neck was extremely sore. I couldn’t turn my head and then I realized I could feel the pain all the way into my hips and my shoulders and the right side of my head. The migraine hasn’t come back but when I feel the headache getting worse on my right side I’ve been taking ibuprofen and using hot packs for my muscle pain. So my question (finally…so sorry) is it possible that I injured myself during this migraine episode? Has this ever happened to any of you? It’s now Friday and I can still hardly move my neck without it hurting. I don’t have a fever and it’s only my right side so I don’t think it’s anything link meningitis. I have a follow up on Tuesday but the only thing I can think of is maybe I pulled a muscle or pinched a nerve? I’ve been scouring the internet and haven’t found anything. Thanks for reading. And I’m really sorry this is so long.

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  • By Nancy Harris Bonk Moderator

    Hi MrsJoenc6,

    Welcome to the discussion forum and please don’t worry about your post being too long – that’s what we’re here for. Neck pain can be a symptom of a migraine attack. We have an article Teri wrote about migraine and neck pain in this link you may want to take a look at; https://migraine.com/blog/migraine-symptoms-neck-pain/. However, once the migraine attack is over, and the prodrome phase has ended (the last phase of a migraine) so should all its symptoms. To learn about the phases of a migraine attack, check out this link; https://migraine.com/migraine-basics/migraine-phases/. Not being able to move your neck is concerning, how do you think you may have injured your neck during a migraine attack? Did you sleep on it wrong, or twist incorrectly? Migraines typically don’t cause injury to the neck and I’m glad to hear you have a follow up on Tuesday. But I might give his office a call and let him know about this persistent neck pain. Keep us posted on how you are doing, OK?
    Nancy

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  • By Ellen Schnakenberg

    Hi MrsJoenc6 – The fact that you are having soft tissue/muscle problems after dosing with phenergan is a little concerning. There is a list of medicines that can cause a specific problem called a Tardive Reaction. When this happens, it causes anything from a tense muscle or feeling of tightness, to dancelike movements, to massive body wide spasms requiring hospitalization and general anesthesia.

    Unfortunately, this type of reaction can occur on the first dosage of medicine, and it can be permanent the first time it happens, which is often misdiagnosed by doctors who are not movement disorder specialists.

    I am certainly not suggesting this is your problem – I just don’t know. Usually it is the simplest answer that ends up being right, and this is not a simple answer. However, I would like to suggest a few links for you if I may. Take a little while to read them, compare them to what you’re experiencing, and consider having a discussion with your doctors about it. If you like, feel free to contact me off board and I’ll be happy to tell you more about Tardive Dystonia, which is the condition I have.

    Hopefully it is a simple muscle strain from sleeping wrong during your attack, but I believe an educated patient is much more able to have an intelligent conversation with their doctors than a naive one.

    Here are those links:

    How Can I Keep my Medicines Down so They Will Work? https://migraine.com/blog/how-can-i-keep-my-migraine-medicines-down-so-they-will-work/

    Migraine Triggers and Comorbidities: Dystonia https://migraine.com/blog/migraine-triggers-and-comorbidities-dystonia/

    Tardive Reaction Avoidable Medications List: http://www.spasmodictorticollis.org/media/pdf/Broch-Meds.pdf

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  • By Sophie

    Hello all and thank you for your responses. I did take a look at the links and the neck pain I have really does sound like torticollis. I have my follow up this morning with my Dr. and I plan on discussing my migraines and this whole neck pain thing with her. I think I’ve been trying to manage this on my own long enough and it really makes me sad when I hear my kids say, “Where is mom?” It’s not fair to me and not fair to my family.

    I did see a chiropractor yesterday and he was able to work on the muscles and adjust my neck (which triggered another migraine last night). I had forgotten but the day before the migraine episode last week, I had hit the side of my head getting into a car. We think that maybe I had caused an injury to the opposite side of my neck, triggering the migraine. Fortunately the chiropractor works with a lot of individuals who have migraines so this week I’m starting a headache and food diary.

    I guess I’ve been in denial for a while and allowing myself to just get by. It kind of seems silly to not allow professionals to help me.

    Thanks again!

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  • By Nancy Harris Bonk Moderator

    Hi,

    Thanks for the update and let us know what the neurologist says, OK? One word about chiropractic work; the migraine specialists we work with feel chiropractic work is OK for the lower back, but not a good option for the neck.
    Keeping a migraine diary is an essential part of any migraineurs treatment. We have a Migraine Meter you can use to journal your head pain, and other good information on migraine triggers in these links; https://migraine.com/blog/introducing-a-new-resource-on-migraine-triggers/ and https://migraine.com/blog/migraine-management-essential-trigger-management/ and https://migraine.com/migraine-meter/

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  • By Ellen Schnakenberg

    Hi mrsjoenc6 – Dystonia is very difficult to diagnose. It takes an average of 5 years and 15 different doctors for most patients to get a correct diagnosis. Please be aware that your neuro may or may not have ever even seen the condition, so it you don’t feel that you have gotten a satisfactory answer about it, please ask for a referral (or self refer) to a movement disorder specialist. Just as a headache and Migraine specialist is the best person to see for headache and Migraine, the movement disorder specialist is often the best person to see if you suspect a movement disorder like torticollis/cervical dystonia.

    As to chiropractic work – some patients find it helpful. Others do not. Not all physicians understand how chiropractic works, let alone how it may or may not be beneficial. All agree however that there are good practitioners and bad ones, and that those with Migraine need to be careful. Make sure your chiro understands that your latest treatment did trigger a Migraine and hopefully there may be an adjustment made to your treatment that may be helpful. Like you, I do sometimes have Migraines triggered after a chiropractic adjustment to thoracic and cervical spine issues. For me, this seems to occur because I spasm terribly when my back is out. Getting things back where they need to be causes additional spasms that are temporary, but powerful triggers. This is one reason I do much better by seeing my chiropractor frequently so that I never get to that point where the spasms are bad enough to act as a trigger for me. Certain types of adjustments (there are many techniques) are more helpful for me than others. Some are better at triggering a Migraine attack. I have found throughout the years that asking my chiro exactly what he is going to do before he does it helps me to minimize techniques that might be a trigger. Once I found a good guy that was open to changing things for me, I stuck with him and things have been much better since that time. He knows me and what works for me and doesn’t, because we talk frequently and he keeps excellent notes.

    In the end, most doctors of any type will agree, that the proof is in the pudding.

    Good luck. Can’t wait to hear what you find out about torticollis…

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  • By Kristint2

    Hi all… New to the group and the world of chronic migraine. Historically I had Episodes only with manageable triggers and maxalt. ( or so I thought then!). On dec 1, I was whammied with a chronic that hasn’t gone away. A couple gp visits, an Er trip and 8 days in the hospital later, I’m now on topamax, seeing headache specialist in Cleveland clinic, getting treatment in feb. . Here’s the deal..im now back to work for the first time in 5 weeks. And I’m not the same. I must be Going through the phases of grief or something…holding it together all day and then crashing at home. Where did my ultra professional self who handled it all for all go? Wtheck is this?! Arg! Suggestions or pointers for making the adjustment? How did the people who have gone before me DO this?! How does one manage the change in their perception of themselves? ….kris

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  • By Ellen Schnakenberg

    Kris – You may very well be right. I too found that dealing with chronic illness was very much akin to dealing with grief, and found that I go through the same stages. The difference? Grief lessens with time, but chronic illness tends to stick around and cause additional issues. The key I think is to realize it for what it is – a stage – and learn how to deal with all the stages. Give yourself some time and patience. This being chronically sick is not for wimps! Here is a link to an article I wrote about this very subject. I hope you find it helpful: https://migraine.com/migraine-and-mental-health/eight-emotional-stage-of-living-with-migraine/ Try to hang in there and realize that you may not be in control of how you feel, but you can very much control what you do with those feelings. Sending you ((Hugs)) from one chronic who struggles to another…

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  • By Kristint2

    Ellen… It DID help. Thats a keeper I think. Not much of a bargainer either…so far anyway… And.. It was nice to not feel alone for the first time in a while. (Exhale deeply). Sincere thanks.
    Kris.

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