National Migraine Centre
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Life in bed and in pain

I am suffering with debilitating migraines daily where I cannot function. I take my meds (which I don’t like to do so often) but feel there is no other choice. Nothing else works. I end up in bed for the day and the next day . . . Does anyone else go through this and if so what do you do to keep sane?

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Sorry to hear about your bad migraines. Have you tried going cold turkey on the medication if it's not working or changing to something more effective? I take triptans which really help me but about 7 or 8 times a year their benefit stops and I stop all medication. I go through the worst of the migraine BUT after a couple of days I come round and feel much better.

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Triptans have always worked for me. I tried going cold turkey because of the possibility of rebound headaches but the pain became unbearable. I guess I need to just tough it out. I get about 13 migraines amonth. Thank you for responding.

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My husband has regular migraines and has to spend a couple of days in bed as if he does anything the day after the migraine comes back. He listens to things of interest on his mobile the day after if he can. It is very difficult and his life is seriously curtailed. You have our sympathy.

Karen

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I’m sorry he has to suffer. My sympathies.

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Hi Dove2259,

I'm so sorry to read about what an awful time that you are having with pain. I used to get migraines that would last 3-4 days and the headache would be active the whole time (including the nausea). There were times that it lessened, but overall, it was around the entire time (and for which I could not take any medication as everything made it worse). My migraines were worsening until I went to the National Migraine Centre in London where the specialist headache doctor put me onto preventive medications (Candesartan and HRT) to raise my threshold. I have now been two months without a migraine as opposed to having almost daily head pain (I really consider this to be a small miracle in my life). Are you in England and if so, could you get to the National Migraine Centre? And if not, are you anywhere near a Migraine Clinic? Forcing myself to go into London was for me a last step (I have tried SO many other treatments for many years) but it has changed my life. Living without pain feels like someone else's life, not mine. I'm only writing this to you to let you know that there is hope and that there is a good chance that an effective preventive medication will be out there that will work for you too. With wishes for you to find something that eases your suffering soon. Thinking of you, Clydelle

P.S. To keep sane, I would breathe deeply and slow my breath down (incredibly, though ridiculously simple, this would ease my pain when I had a migraine) and I would also tell myself that pain is never the same from moment to moment; pain changes and if I could bear one moment, the next one would be different and I could live through it. Reading "How to Be Sick" was such a great help to me by Toni Bernhard. Hang in.

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Hi. Glad that you are getting relief and positive story of treatment helps me as a sufferer of over 23 years.I am now 46. I have recently been prescribed candestran by neurologist but really worried about side effects. He has said if this does not work then toparimate. How do you fimd it? I have also been prescribed progesterone only pill that so far touch wood got rid I hope of my horrendous menstrual migrane however I’m still getting them at other times and have some form of headache every day. Thank you.

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Hi Gwenfro,

I don't find any side effects with Candesartan but you will need to have a blood check every so often to make that your liver is OK (I believe). I can live with this if it means that the migraines will lessen. I find them so debilitating that it's hard for me to look after my two sons (in fact, all I can do with a migraine is lie in bed and pray for it to pass after two or three days). The Candesartan has not taken all of the migraines away (I just had another one since Sunday night) but it has lessened their frequency a lot. And that means a lot to me and my life. I've heard that Topiramate comes with a lot of side effects and so I'm not sure about if for myself. On the other hand, everyone responds differently to medicines and it's probably best to try one for yourself under the supervision of your doctor to see how you do on it. I would give Candesartan a go and see how you find it. I'm 54 and my migraines have worsened since menopause. I'm expecting that they'll be around for a while yet but am hopeful that 10 years after menopause, they might shift a bit. Anything that can help me in the meantime, is a wonderful gift! Suffering is no fun! Also, the combined estrogen/progesterone patch seems to be the one recommended by migraine specialists because the hormone delivery is smoother and more even. Wishing you luck as you decide what is best to do. Take care.

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Thank you for your reply. It’s comforting to know that there are people who understand. You take care also xxx

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Any history of autoimmune disease in your family? Including Thyroid etc or relatives past or present with miscarriages or heart attacks or strokes at an early age? MaryF

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Not that I know of, no.

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Hi Clydelle,

Thank you for your suggestions. I live in Canada but I’m sure we have a similar clinic here in Ontario. I have tried a couple preventatives but they didn’t work. I know what you mean by feeling like you’re living someone else’s life when you are pain free. When I have those few consecutive days without a migraine it’s like I don’t know what to do with myself because I’m not used to it.

Glad you are feeling and doing much better.

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Thanks Dove2259! I'm Canadian as well (lived in Toronto for many years) but now am in the UK. If you go to the Migraine World Summit, they have information on many differing preventatives and their message is not to give up until you find one that works for you. There is always hope. Their advice and information has been a life saver for me. There are days with migraine, when it's hard to see how to move forward positively but after listening to their talks from experts on migraine (well worth the money purchasing), I'm more confident of finding help than I have been in years. We just have to believe that there will be something out there that will help us. I have found this to be true and really hope the same for you. Wishing you well and sending you very best wishes.

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I actually watched a few of the talks on the Migraine World Summit. I think It’s time I found a new doctor that hasn’t given up on me. Thank you and best wishes for pain free days.

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Oh my dear Dove2259, I was born with Migraines, literally. Throughout my childhood & adolescence they were intermittent but still Hell. I was formally diagnosed at the age of 5 but there was no medication available for that age group. I began formal medication treatment (meds) at the age of 7. AS intermittent they would last 1-3 days & only happen every few months. In 2005 they began to last longer, be more debilitating & recur quicker, more often. On Nov. 28, 2008 I had such a severe Migraine that I was hospitalized for 3 days and that Migraine has not been aborted since. I am in a constant loop of Migraine cycle and no physician has been able to abort it. Along with this new Migraine style came new problems like Trigeminal Neuralgia-which means my face from my ear, across & under my eye then down the side of my nose to my lip feels like it's on cold-fire & it has a stabbing pain in my head right behind my ear. I live on meds to control it, meds to control nausea/vomiting, meds for muscle relaxation, meds for pain & Migraine-insomnia, in addition to a constant stream of ever changing meds in desperate attempts to abort/prevent the Migraines. The Migraine causes dizziness but so do most of the meds so I'm always very dizzy & I just live with it, except for when I fall down. LOL The insomnia is a terrible side-effect illness & brings with it a whole bunch of yuckiness because of the long term lack of consistent quality sleep. I live with various ice packs on my head & neck. They don't stop the pain but they are excellent topical numbing agents & distractors; until I get tired of being so cold! I am now unemployed & disabled. All of the sensory issues that come along with Migraines are very bad so I live in the dark & quiet & I do nothing & go nowhere. My poor family is stuck living with a human mole-person. Sanity is a very rocky road in this type of life. I struggle with my faith regularly, but it is there anyway. I have a terribly low view of myself & my validity to remain alive. I will not commit suicide but understand those that do. I used to have a great job that I loved & was an avid, successful multitasker. Now, I can't remember anything. I can't even follow a recipe to bake a cake. I write everything down but forget that I've done that & then can't recall where. The list of Migraine 'crapiness' goes on & on, sorry to say. I have found a wonderful support system on Twitter as many others who are just like you & I have blogs & there are many organizations on there as well for support; I love these guys. A few are: A Chronic Voice, Migraine Buddy, BrainlessBlogger, The Daily Migraine. If you go onto Twitter & look up these guys to follow, you'll find many more. They help me just by letting me vent & cry & by totally validating my hellish life & all that the Migraines have robbed me of. My family is awesome & understands as much as possible & does everything they can for me in a constant show of love, care & compassion. Outside of home & Twitter, I have a dear friend from years ago that lives far away & we talk via email a bit; but otherwise I have no social life. I enjoy my family & when I can tolerate the light, I love to color-it's a good creative distraction. One thing I discovered recently that may sound strange with phonophobia symptoms is that I put headphones on when I go to be & listen to whatever I feel like I'll enjoy; I turn the volume way down & focus on the music. I fall asleep with it on & I leave it that way all night & it's great. I believe it's helping me fall asleep easier & faster as well as staying asleep longer & maybe even sleeping a bit better. Since I can barely move because of the Migraine junk, I obviously do not get any exercise so I'm now very overweight. I have osteoarthritis in my knees, hips, etc. I have a torn rotator cuff in my left shoulder from a fall & now probably another one on my right shoulder from a recent fall. I have degenerative joint & disk disease as well. So, all-in-all, I fell pretty screwed most of the time. I'm focused on helping my niece who lives with us to get thru college & into her chosen career. That's the biggest most important thing in my life right now. Without her, I have no idea what I'd focus on to keep me alive. There's nothing else as important or long term impactful. Otherwise, I just wait to see what God is going to do, which often feels like nothing although it's all in His timing-not mine. Anyway, sorry for the lengthiness of this reply. I hope it at least helped you feel that you're not in this alone. Do go on Twitter, it's great. If you do, you'll see me, I'm Cowgirl.

Take care & God bless you!

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I’m so sorry to hear about your migranes. It really is awful. I have suffered 23 years of them and have reduced working hours but am struggling. I have also had dark thoughts in the midst of extreme pain it really is debilitating and only fellow migrane sufferers understand the extent t of the pain. It is not a normal head ache.

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Oh my gosh. You poor thing. How I sympathize with you. At least you have the support of your family and your faith to help you. Thank you for sharing and for the suggestions of the other sites. I have heard of a couple of them and checked them out. I am not on Twitter as it intimidates me but I will try to find you on there. Do you mind me asking how old you are and what country you are from? I am in Canada and 59 years old. Migraines kept getting more frequent and severe as time went by. Take good care of you.

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