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3 years downhill

My life with chronic migraines

It all started 3 years ago after I began taking birth control. Before it hit, I was active I was a spinning instructor, worked full time and did personal training. Nothing slowed me down. I loved the loud music at the gym, going out with friends, looking to advance in my career and working on learning a new language.

Studies show women are more prone to migraines especially with hormonal changes. I keep wishing there was a reset button where I could go back in time, figure out I had a family history of migraines and some cautious gynecologist could warn me not to go on birth control. Maybe then my life would be filled with less pain.


I have been through all the usual preventative meds, antidepressants, anticonvulsants all of which wreak havoc on my body, I tend to have the most obscure side effects, doctors don’t understand them or how to treat them. The treatment for these side effects is usually more medication. Which often worries me. I am an advocate for my care and always have been.

Today I checked my migraine buddy app and saw that I have had way more debilitating days than day’s where I was functioning well. That’s not a good sign. Clearly modern medicine is failing me, or I am failing it.

When I wake up each morning I pray the headache doesn’t hit. I pop a few pills for prevention, deal with the side effects, blurry vision, feeling slow, insomnia, etc.

I walk to my bus stop passing the smokers, holding my nose hoping they don’t trigger a migraine. I try to go to the gym on the few days I feel well enough, but this time the music is way too loud, I wear earplugs and plead with some instructors to lower the volume to no avail.

I have forced myself to like pilates and yoga, mediate and turn to shiatsu and other massages.

People keep saying everyone gets better eventually, but it’s not always true. Some people live with the pain and don’t find a cure. Will I be one of them?

I hate sitting at home in pain, with an ice pack on my head, missing work yet again, hoping tomorrow will be better but knowing my body is failing me.

My husband picks up the slack, my parents check in sadly trying to give me hope and support. My doctors work hard to be in touch and walk me through each step of the treatment plan as my condition worsens. I have a qualified team behind me but they have a limited number of tools at their disposal, and let’s just go on and say it- treating neuropathic pain is no walk in the park. At the end of day I am the lab rat hoping something works.

Are all these meds helping or hurting? I don’t know. Last time round, the withdrawal was hell. Now I know With my current heavy dosing of medications the withdrawal will be much much worse.

Will I be able to succeed in my career, have children one day? Get through life without such disability?

Doctors can’t answer these questions.

To all the migraine sufferers – I hope the cure comes faster, and genetic testing becomes possible. Maybe then we can detect and prevent this debilitating disease from being passed on.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Trisha27
    2 years ago

    As a migraine sufferer for 21 years, I can understand your frustration. I too had hormonal migraines staring when my youngest son was 2.( He is 24 now) I tried many medications, Botox, dry needle therapy, anything! My neurologist told me when I reached menopause, I may get relief. Not the case. It was living hell for the 2 years prior, during and after menopause. Finally, now I can say my migraines are getting less frequent. I still cannot drink alcohol, sunshine gets me, bright lights and smells. Lack of sleep, the usual triggers. My migraines are down to 4 or 5 a month, which is heaven. The reason I am venting about this is I never asked for help. I suffered in silence, feeling like I was weak because of migraines. I hid it from my kids, friends, even my husband because I did not want to be a burden. I thought I was weak, people would think it was all imaginary! Now I realize that was wrong. I needed help so many times! Please keep trying to find a cure, but realize this could be your new normal. Let others help you and do not be ashamed to admit you need it! All the best to you!

  • Holly Baddour moderator
    2 years ago

    Trisha27- what great advice. Thank you so much for joining the discussion, sharing your experience and offering your support. So many people have told me that migraines lift during menopause but I finally met with an OB who specializes in migraines and she said generally (for women who have had children) if your migraines worsened during pregnancy, they will likely worsen during menopause. If they lifted during pregnancy, they will lift during menopause. For most women, pregnancy offers relief from migraines. For me, it did not. So, I am now terrified of menopause. Nice to hear from you that although you had a storm of migraines during menopause, they eventually backed down to 4-5 a month- a number I agree would be heavenly! I also agree that although it can be hard, it actually is not weak but strong to insist on help. Because doing so ultimately means you are insisting on not folding/giving in to your migraines. It’s so important to educate those around you that this condition is real (migraine.com has so many articles that you can share with those around you to help with that process). There is nothing to be ashamed of. You did nothing to deserve migraines or to cause the condition. It is all about managing them so that you can continue to experience as much of your life as you can. So glad you are here. Holly Baddour (migraine.com moderator)

  • 1h9jk4h
    2 years ago

    My migraines started at peri menopause. I’ve been dealing with this crazy hormonal migraine situation for years. I also tried “natural hormones” to even out my fluctuations but now it’s time to get off so mine are once again out of whack.

    The only med that works for me as a preventive is methergine. I can be on it for several months then need a holiday. My migraine specialist is very careful and I also go for chest X-rays and an echo following treatment.

    I am cautiously optimistic about the CGRP drugs in clinical trials and hoping to get a chance to try treatment!

    Best wishes to you. Keep up the search. A great migraine doctor helps a ton!

  • Chronic migraine life author
    2 years ago

    Hi Cathryn, very sorry to hear that – I am the queen of side effects. I got a migraine after a nerve block so I imagine I may have the same luck with botox but hoping not.
    I am on topiramate and Neurontin along with 2 other medications to cover up all the side effects it causes. It’s far from ideal but I am able to work and exercise more than before.

  • cathyn
    2 years ago

    I could have written your story, except my catalyst into the world of chronic migraine was getting off birth control pills. I had been off them for periods of time in my 20s and 30s with no issues, but when I stopped in my mid-40s migraines got bad, and they got bad fast. I went from one every month or so to 2-3 per week and now they are almost daily. From what I gather,that’s not uncommon in women my age who are riding a hormonal roller coaster.
    I’m curious — are you still on bc pills? Or did you stop but the effects linger?
    I’ll be starting a Phase III CGRP clinical trial soon, and that gives me hope. Everything else I tried has failed in doing anything but draining my wallet.

  • 1h9jk4h
    2 years ago

    I would love to hear about your experience with the clinical trial. I am anxiously awaiting their debut on the market.

  • cathyn
    2 years ago

    I tried Botox twice. The first time it didn’t seem to help, the second time I got a severe headache (not migraine) that lasted for five days. Needless to say, I didn’t go back for Round 3. But it does help some people. The problem is all Botox does is cover up what’s causing the migraines in the first place. I feel like if I could get my hormones back to normal, that would help a lot.
    The CGRP open label study I was supposed to be in filled so quickly the clinic I was going to go to was shut out of the study, so I’m terribly disappointed. I can go in a double-blind placebo study now if I want, but would have much preferred open lable.
    What preventatives are you on? I have not wanted to take any up to this point, but am starting to consider it.

  • Chronic migraine life author
    2 years ago

    I’m still on it because now I get menstrual migraines. I’m planning to come off soon but like you scared of the hormonal impacts, part of me hopes that it will do a reset for my body but that’s probably wishful thinking. Let me know how cgrp goes I’m thinking of it as well, along with Botox which isn’t covered where I live. Wishing you lots of luck. Hormonal issues are severely understudied

  • GardensatNight
    2 years ago

    I’m so sorry things are a mess at the moment. I hear what you’re saying about hearing everyone say people eventually get better, but knowing that’s just not true for everyone and worrying it won’t be for you. I could have written many parts of your post. I got sick 2.5 years ago. Was basically healthy before, just had a migraine once a month at my period. Now have chronic migraine and can’t go anywhere because of chronic photophobia. I also question constantly “what caused this?” because like you, it was so sudden. It seems like every person who questions what’s wrong with me demands to know *why* I suddenly got sick when I hadn’t been before, in a tone like I should be able to provide an answer to that, or medical science should, when the truth is, there’s just so much no one understands about migraine.

    I’m glad you have the support system of your husband and family. I hope you can continue to try new options. I’ve tried quite a few over the last almost 3 years, and like you, have gotten very discouraged when many have completely failed, especially when I read online and other people have such success with them. I haven’t found anything yet that has made it where I can tolerate any man-made form of light without immediately triggering a migraine, and I can’t tolerate direct sunlight anymore either, but I started botox over the summer, and it’s given me more pain-free days, and pain-lessened days. My new neurologist talks all the time about the CGRP drugs they’re working on and how she hopes they’ll make it through the drug trials because she believes they could offer a lot of her patients real hope. Anyway, sorry for rambling a bit, but please know even if something hasn’t worked yet (and it hasn’t for me, really, either, it doesn’t mean something *won’t* ever.)

  • Chronic migraine life author
    2 years ago

    And thank you for sharing your story shows you had courage through it all. And you describe it so acccurately it’s severely understudied I went to an international headache conference last month and hormones weren’t even mentioned. I was almost shocked by the lack of attention it received. Cgrp was the main focus. I hope the research continues to advance more quickly and your improvement continues!

  • Chronic migraine life author
    2 years ago

    Thanks I’m thinking of Botox and cgrp as well. Luckily my cocktail of preventative meds is starting to work for now. I had a similar period of photophobia and intolerance to noise, among many other things. So glad botox has helped- that’s my next step.

  • DonnaFA moderator
    2 years ago

    Hi Chronic migraine life, thanks for being here and sharing your story with us. I’m sorry that you are suffering. It is wonderful to see, however, that you have a robust support system, which is so important. Please know that we’re also here to share support, or just to lend a friendly ear. -All Best, Donna (Migraine.com team)

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