Playing Defense Against Chronic Migraine

By Holly Harding

1 min read

With chronic migraine, we frequently feel as if we are playing defense. Indeed, we can feel as if we are spending our days and lives chasing migraine pain and related symptoms. Even if we are employing prevention strategies and have good working relationships with our doctors, this dynamic can feel draining and defeating. In this video, Holly shares how she recently had to acknowledge this dynamic in her life and ultimately make peace with its presence.

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Do you feel like you spend too much time playing defense against migraine? How do you navigate this reality? Finding support can be key. Or, perhaps you are playing offense due to finding some treatment strategies that work well for you. We’d love to hear about your journey in the comment section below.

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kateymac Member
Hi Holly - I can absolutely relate to the relief that was part of what you felt when your doctor said something like “well, that’s what migraine is.” When I regularly saw a migraine specialist, it was a comfort to have her understand that. It wasn’t even disappointing at that point, not anymore. It was a relief to feel like I was allowed to accept reality. She didn’t expect me to keep trying new things, forever and ever, when none of them were going to fix this thing. I’ve shared my recent struggles with searching for a new doctor since my neurologist left his practice. I’ve met twice with a doc at a pain clinic. It was exhausting to have this guy rattling off a list of the services they could offer. Frankly, I am too tired for all that. I settled years ago on “management” of this illness and I have no energy to do a bunch of things that might feel good but will have no effect on the migraines. Some might say “well, you could TRY them; they MIGHT help..” But I know that i just can’t start that rigamarole again. Thankfully, I’ve just found out that my former migraine specialist will see me again. I’m thrilled. I stopped seeing her five years ago because the drive became too difficult. But she REALLY KNOWS MIGRAINE. I have a friend who has offered to drive, and I’ll be just hoping hoping hoping to be able to get up on that day and tolerate the ride. This woman gets it. She’ll do whatever she can, but she also knows that migraine is migraine is migraine. I need that. Thanks Holly, again, for a post that leaves me less alone. It really helps. Kate 🌷 
1. Holly Harding Moderator & Contributor
 <inline-mention username="kateymac" user-id="3784217"/> - hey Kate! Love hearing from you and glad this piece resonated with you. I’m sorry to hear you were in between migraine specialists. I hope you can have help with making that long drive to see your previous one. Your statement about the challenges that come with new treatments is one that is relatable to many. I actually wrote a two-part series on this issue… The very trying challenges that come with trying new treatments. Perhaps it will resonate with you: <a href='https://migraine.com/living-migraine/trying-new-treatments-beginning-stages' target='_blank'>https://migraine.com/living-migraine/trying-new-treatments-beginning-stages</a>. I’m so so glad you’re with us. Always so wonderful to hear from you. Please keep in touch. Sending love Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team
Prettymomma Member
I totally get what you are saying Holly. I used to keep a journal too but found it fruitless and defeating due to chronic migraine and hemicrania continua. I am definitely on the defense on this and right now really struggling. Nothing seems to be helping at the moment and it is very hard. I go to the Neurologist in the middle of December and I am hoping once again that he may have some solutions and new things to try. Thank you for your video! Take care😀
1. Nancy Harris Bonk Moderator
 HI <inline-mention username="Prettymomma" user-id="7002652"/> Thank you for your kind words! Holly is the best! She always shares such wisdom. Like you I've found keeping a daily migraine diary frustrating and exhausting. I understand it's value, but find it so demoralizing. My fingers and toes are crossed your appointment goes well next month and I look forward to your update, Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team 
2. Holly Harding Moderator & Contributor
 <inline-mention username="Prettymomma" user-id="7002652"/> - so sorry to hear what you are up against but glad you can share some of that weight for us to carry alongside you. You are not alone in this. It’s totally normal to go in and out of hitting a wall of exhaustion with this condition. I really hope your upcoming appointment is helpful. Will you let us know how it goes? Sending huge love your way. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team
azreynolds Member
Howdy Holly! Defense? I feel less like I'm part of defense and more like Forrest Gump running right past everybody and out of the stadium, down the road and then hiding under a pillow. It just seems like nothing is helping right now. I had such high hopes for Nurtec, but alas, it isn't working. I'm at the end of my Aimovig cycle and I'm pretty sure next year I won't qualify again because my hubby made too much $$ this year. (Doesn't feel like too much money, but I'm almost positive it is.) I don't need a migraine journal because I've been using Migraine Buddy since 2018. I really love that it keeps track of years and years of migraines so I can't compare how I'm doing. Ever since my faceplant in June this year, my migraine count has increased almost to where it was before I started Botox and Aimovig. But what can I do? Now that I've healed from all of my surgeries, I'm trying to get stronger and exercise more all in hopes that it will help prevent migraines. Remains to be seen. In spite of constant headaches, I am trying to stay positive. I've been told the ketamine supplies are supposed to catch up by April 2024. Maybe if I can restart those infusions, I'll get better. Hope you have a wonderful holiday season! 
1. azreynolds Member
 Sorry, autocorrect changed "through my nose to my lips", to "through my body". Lol. But it literally cut inside my nose down to my lips. It split into three cuts on my upper lip, and my teeth cut inside upper and lower. Funny thing is the ER doc didn't do anything for my lips or chin and cheek. Not even clean away the blood, but they all healed nicely. But my forehead he cleaned and used glue on it because it was so deep. It caused the ugliest scar I have on my face! And I have 6 scars from over the years. Only this one stands out. Lol 
2. Rebecca C Moderator
 You've dealt with some very serious trauma, <inline-mention username="azreynolds" user-id="3677307"/>. Those falls must have terribly painful and debilitating. But, it's great to hear you healed nicely. I do think a little more attention to the face by the ER doc would have been helpful .... ughl. I like to say I wear my scars like other women wear their jewelry - proudly. I have so many scars that people ask if I've been in a car accident. But when I tell them it's all from surgeries, they step back stunned. Embracing physical scars is a powerful perspective, acknowledging the resilience and strength it takes to navigate through daily life. It's truly unnerving to hear that after this latest concussion, your migraines doubled back up and you've developed symptoms of vertigo, loss of balance and coordination with upper limbs, and difficulty with memory. I do hope the PT helps. Thanks for allowing us a view into your world and showing us your strength and endurance. Wishing you well. Warmly, Rebecca (community moderator) Happy Holidays!!!!
Alene L. Brennan, RYT Moderator & Contributor
Thank you as always <inline-mention username="Holly Harding" user-id="3755969"/> for such heartfelt and valuable messages. I love this concept of looking from the perspective of offense versus defense. I have to admit when I first started getting migraine when I was younger, it was nothing but defense. I wouldn't get them daily but I averaged about 3 debilitating days a week. That was hard from a school attendance perspective although most of them were letdown headaches that I would experience on the weekends. Nonetheless feeling so out of control really made me look at what I could do to support my health. I chose an integrative approach of using both conventional and functional medicine (although it wasn't called that at the time). I used conventional medicine to get me out of a migraine - I am very fortunate that sumatriptan worked for me and still does for the most part to this day. To help manage the prevention side of it, i focused a lot on diet and lifestyle. I personally found a really strong connection between foods like chocolate, caffeine and any alternative sweeteners or food coloring. It wasn't easy to make those changes as a kid, but feeling good enough to play with my friends helped to keep me going. I also found bodywork to be effective over the years with helping to preventing the tension buildup in my neck and shoulders or at least making a migraine attack just a little more tolerable. As we all know with migraine what works for one person doesn't always work for the other, and what works for me today isn't guaranteed to work tomorrow, but I really enjoyed your video and this discussion that you started so I wanted to share my story as well. Thanks as always for the incredible support and encouragement that you bring to us here. - Alene, moderator
donshunter Member
40 years living with daily mixed migraine, persistent daily headaches, while continuing to work full time (semi-retired now). Daily rituals to try and remain mindful of the joy in life include: meditation, yoga, essential oils, vitamins, triptans and Xtylenol, reading and writing. As a psychotherapist, focusing on the pain (emotional and physical) that clients experience, helps me to 'decenter', to not 'feed' my pain with attention. The fifteen years I was trying various narcotics to treat the pain, juts made everything worse.
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="ChristineMarie" user-id="8781851"/> that makes sense, and it unfortunately is all too common when it comes to finding effective treatments for migraine in the long run. I'm at least glad to hear that it's helping with the pain. We're with you in this, and hope our doctors continue to have more options on the horizon to treat all types of migraine and all symptoms of migraine. - Alene, moderator
2. Holly Harding Moderator & Contributor
 <inline-mention username="ChristineMarie" user-id="8781851"/> - Thank you so much for sharing more information about this approach. This is the best description I've seen regarding the placement of this device. Interesting to hear about the loss of efficacy with time. And regarding the fact that it addresses the pain but not the many other neurological symptoms that accompany migraine is interesting. I find this to be the case with Botox as well. Like, <inline-mention username="Alene L. Brennan, RYT" user-id="3663804"/> , I'd like a better understanding of how it's working for you - any side effects you encounter - and how long you've had the implant. For those reading along who would like to learn more about the device, here's a link to our resources on the topic (including other community members sharing first-hand experience with it): https://migraine.com/search?s=neuro%20stimulator%20implant. So glad you're with us and please keep in touch. Warmly - Holly - <a href='https://migraine.com' target='_blank'>migraine.com</a> team
jimhopf Member
Yes I feel like I’m playing defense with my daily headaches and migraines and it’s very taxing. I truly wish I was “normal” because I like to live an active lifestyle. I use Migraine Buddy to track the attacks, as disappointing as it is to look back at the reports, month after month. All that said, my neurologists and I try to stay positive, looking for a solution, drug-related and non, to this suffering. Happy holidays to all of you.
1. Holly Harding Moderator & Contributor
 <inline-mention username="jimhopf" user-id="8653913"/> such a important point about striving for a positive perspective in the midst of such a challenging disease. Easier said than done, for sure, but still so healthy and important to strive for positivity. Appreciate your chiming in. Please keep in touch! Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team
ChristineMarie Member
I keep a migraine journal with symptoms, interventions, and triggers as part of my planner. I also feel like I’m not only hoping that I can attend whatever function is planned but also carrying an arsenal of OTC and prescription meds. I receive disability for complex chronic migraine so I do a fair amount of advocation and education about migraines. It’s a grieving process when you lose part of yourself to ANY chronic illness so I try not to let other people’s comment or judgments from adding to my feelings of guilt when I need to cancel an event. 
1. Melissa Arnold Community Admin
 <inline-mention username="ChristineMarie" user-id="8781851"/> We are big proponents of migraine journals around here! They can provide so much insight and take some of the burden of recalling symptoms off your shoulders, especially when brain fog is an issue. Do you feel like your journal has helped you learn more about your specific triggers? Keep taking good care of yourself! -Melissa, migraine team
2. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="ChristineMarie" user-id="8781851"/> yes, I'm a fan of migraine journals as well. I actually wrote this article about journal prompts that you might enjoy. https://migraine.com/living-migraine/journal-prompts-for-chronic-pain Thanks for sharing your experience here and for being such an advocate for migraine. There is much education needed and it sounds like you're doing a lot to fill that gap. - Alene, moderator
Holly Harding Moderator & Contributor
<inline-mention username="ChristineMarie" user-id="8781851"/> you sound quite experienced in the way of chronic migraine. I think making plans is healthy even when it means canceling on a regular basis. Better that than hiding away from life for fear of impending attacks. In the face of this, I strive to be spontaneous. So, if I do shy away from booking myself up for fear of constant cancellations, I call on myself to mobilize when I feel good enough to do so in the moment. I wonder if this piece might resonate with you on this topic: <a href='https://migraine.com/living-migraine/dynamic-rigid-flexible-spontaneous' target='_blank'>https://migraine.com/living-migraine/dynamic-rigid-flexible-spontaneous</a>. So glad you’re with us. Keep your wisdom coming. This is a great place to learn with and from one another.Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team
dizzylizzy7 Member
Thanks for the phrase “playing defense against migraine” . It aptly describes where so much of my life energy goes. That applies to what i do, what i don’t do, my daily routine , the special shades on my windows , the plain white comforter on my bed, the noise cancelling headphones, special colored eyeglass lenses, the movies and theater and concerts that I do NOT attend, the ever present water bottles, the eye shade, the hats with brims, and on and on and on.
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="dizzylizzy7" user-id="3890787"/> it can feel so good when someone puts words to what feels like an indescribable feeling and experience. I find it to be validating, and I'm glad to hear that this resonated with you as well. We're so glad that you're part of this community. - Alene, moderator 
2. Rebecca C Moderator
 <inline-mention username="dizzylizzy7" user-id="3890787"/> - Thanks for sharing what you put so much of your effort into. When written down and shared, it certainly makes it clearer where our time and energy go daily. I am so glad this phrase captures the essence of your experience with chronic illness. Living with migraine disease can indeed be a complex and sometimes indescribable journey, filled with various emotions and challenges. We send strength your way. Validation is an important aspect of navigating these experiences, as <inline-mention username="Alene L. Brennan, RYT" user-id="3663804"/>, states. And, I too am glad you are here and a part of our community to support others struggling through. Cheers to the New Year. Hoping it is healthy, safe, and joyful. Warmly - Rebecca (community moderator)
wddelise Member
Your experience sounds very familiar. Sometimes, no matter what is tried, there are days that migraine is going to resist all attempts to make it go away. Devices have come to play an enormous part in keeping migraines manageable. Everyday involves head pain so devices help keep the pain levels at a 3-4 on days when migraine is cooperative. Medications: Because of hair loss (brought on by anti-cgrp injections) and low bone mass, I can’t use the anti CGRP Injections so I use Nurtec for rescue 4 to 5 times a month. Rizatriptan is used for bad days. Devices: I use Allay lamp, Eneura, Nerivio and Zok. These are key to functioning daily. I sleep with a tens unit every night to keep my shoulder muscles relaxed. Yes I know they say not to sleep with a tens unit but I’ve been doing it for years and it hasn’t killed me yet. An ice roller for my head and heating pad for my shoulders. Foot massages, chiropractic and daily exercise as well. I have earplugs with me at all times and never go outside without sunglasses. I have never experienced nausea and vomiting from migraine or allodynia, for which I am truly thankful. I don’t deal with comorbidities that prevent my use of anti inflammatory drugs or triptans but I do tend to experience drug side effects so this limits my medication options. Vitamin B2, Magnesium citrate, D3, ginger-turmeric supplement, b12 and avoiding triggers. For me, prayer is my rock. For others it may be meditation or mindfulness. Deep breathing and keeping the light warm are helpful as well. Thanks for sharing your experience, Holly. You look beautiful.
1. Melissa Arnold Community Admin
 <inline-mention username="Rebecca C" user-id="3677527"/> We have a couple articles about the Allay lamp and green light therapy: https://migraine.com/search?s=Green Of course, no treatment fixes everyone, but some people absolutely swear by it. Let us know if you try it! Have a peaceful holiday. -Melissa, migraine team 
2. Rebecca C Moderator
 Thanks, <inline-mention username="Melissa Arnold" user-id="3827796"/>, for guiding me in the right direction. I've never heard of an "Allay" lamp but am very familiar with the green light therapy. Just looked it up and didn't realize these were one and the same. My daughter has a therapy light for her seasonal affective disorder which works nicely. I may consider undertaking light therapy soon. I am also interested in the Zok device - when younger with sinus issues, I searched, without luck, for a device like this. Two surgeries later, I'm still very interested in its effectiveness for the pressure and migraines I have. I hope you are having a wonderful, healthy, joyous holiday season. Thoughtfully, Rebecca (community moderator)
Nanaof8 Member
I'm dealing with a new insurance that is denying my infusion...I have had it for over a year and had just had an increase and I made it almost 6 weeks with only a few major migraines. I'm almost 6 months late and I'm back to dealing with the start of a migraine, the pain or the hangover. Maybe 1 to 2 days without any symptoms. I hate having to switch.
1. Holly Harding Moderator & Contributor
 Hi <inline-mention username="Nanaof8" user-id="8783449"/> - Thank you so much for chiming in with your experience. It is deeply troubling when insurance steers the ship in terms of what we can and can't use- especially when we find something that makes a difference. Have you been using Vyepti? Sounds like you have chronic migraine from the frequency you are describing. Have you tried to contact your doctor re: writing an appeal to your insurance company? That can sometimes work. I thought you might be interested in this recent piece we published about insurance companies and the hurdles they present to care:https://migraine.com/living-migraine/insurance-obstacle. Thinking of you and glad you're with us. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team 
2. Rebecca C Moderator
 I will be in the same boat, <inline-mention username="Nanaof8" user-id="8783449"/>, at the beginning of 2024. I fear what I may need to go through to get my plethora of meds approved by a new company. I will be turning to my physicians to assist me in the process and have studied the best course to take such as appealing a denial and proving my necessity for treatment. I certainly hope you find a way to get your denial approved. I hope that this is not putting a damper on your holiday plans and that there is joy, peace, and hope near you and your loved ones this season. Thoughtfully, Rebecca (community moderator)
Nanaof8 Member
Holly, Thanks and yes both my migraine specialist and my rheumatologist have appealed. And yes, I use Vyepti. I have used so many different medications. This helped the best. I can't take Tristan because I have had a stroke. 
1. Holly Harding Moderator & Contributor
 <inline-mention username="Nanaof8" user-id="8783449"/> - ok- really hoping an appeal will come through for you on this as it worked well for you. Sounds like you’ve been through so much. We are here for you. Please stay in touch. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team
CommunityMember15552f Member
I have migraines all the time it feels like it's never a day without one my head feels like it's going to pop and a lot of pressure in my head too and when it gets really bad I see double vision 
1. Holly Harding Moderator & Contributor
 <inline-mention username="CommunityMember15552f" user-id="8594906"/> - thank you for sharing some of your journey with us. It sounds like you are living with chronic migraine. This condition is exhausting to manage. What kind of support do you have to help you? Are you seeing a migraine specialist for evaluation and treatment? They are especially trained to offer the most recent types of treatment strategies. If we can help you find one in your area, please let us know. We are here for you to provide support and information anytime. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team
CommunityMember2d187d Member
 My name is Pat .My Thanks to Holly and everyone who shares here. I am new here and this is my first post. I have had migraines for 54 years , since I was 12. I have always had an aura though it has changed over the years. Several times when I was younger I have been unable to see and have had to call out to whoever was around me to help me get to safety. It changed to my eyes blurring and sometimes numbness on my arm and sometimes nausea. Just this year it's changed to the left side of my nose at the bridge feeling frozen and really painful also with L sided pain in my neck and shoulder. I take Fiorcet since I'm 12 and it often helps. It must be taken when the aura starts as it is not a migraine interrupter. If the Fiorcet isn't working within 20-30 minutes I have a headache hat(ice cold ) that I put on my head along with a warm moist neck wrap . If that doesn't seem to be working I have Nurtec ( Newly prescribed in May).Sometimes it works , sometimes not. You all know how it goes .. But I really do try to be on the offense. I know I cannot skip eating. I know I need to get 8 hours sleep but not more. Too much sleep is not good ! If I am tired or hungry bright lights or a flickering candle are real trouble as are certain smells. I mostly have nothing in my home that has an artificial smell. Those plug ins are killer for me. I have asked people to unplug them even in their own home if I am visiting because I can feel as if I have been stabbed in the eye and get an immediate headache. I can handle essential oil fragrances. That's all for now. I feel I have gone on too long already. So sorry. Again , thanks to all for sharing. If we can help one another , how nice that would be .
1. Holly Harding Moderator & Contributor
 <inline-mention username="CommunityMember2d187d" user-id="6893084"/> - Welcome, dear Pat! We're thrilled to have you with us. And no apologizing for sharing your journey! Your last comment about how we can help one another is wonderful - and we only become stronger by gathering, sharing, and supporting one another. Every journey shared validates the experiences of another. And with a disease that can be so isolating, it can be a huge relief to find out we are not alone in navigating these challenges. So, please keep sharing- and know we are here, listening- and so grateful for you. A lot of what you described resonates with me as well. The plug-ins ARE a nightmare. My son and his wife have those in their house and it's a real willpower situation to see how long I can be in there given the strong smells. Like you, essential oils are the exception when it comes to smells I can handle. In fact, they are helpful sometimes as they help me relax and breathe deeper. We each have to find which scents work for us in this way. Thank you for sharing a bit about how your migraine attacks have evolved with time. Finding an effective treatment can be so tricky as it can feel like playing whackamole. Once we find something that helps to manage this or that symptom, another one rises its head and we're back to the drawing board. Because migraine has no cure - it is all about managing the complex symptoms of the condition. And the treatments often come with their own side effects that can rival the challenges of migraine. No easy answers. Good for you for being open to trying new treatments. Nurtec is in a family of drugs called CGRPs- if it works for you sometimes, that's a good sign. It may be worth exploring adding another CGRP treatment to your regimen. For instance, you can take Nurtec (used as a rescue strategy) along with something like Ajovy, Emgality, or Aimovig (these are preventative treatments that are taken once a month). And there are more- Ubrevly, Quilipta, and Vyepti are some other options. Here's some information on the CGRPs: https://migraine.com/cgrp-new-direction-migraine-treatment. How do you feel about the doctor you are working with? I ask because it can help to be evaluated and treated by a migraine specialist. They are trained in the complexities of the neurological condition that is migraine. We can send you some referrals if you'd like. Hopefully, you're in a good partnership with your current doctor. Please know we are here for you as you continue along in this journey. We are in this with you and most of us are also living with migraine. Again, welcome! So glad you're with us. Warmly - Holly - <a href='https://migraine.com' target='_blank'>migraine.com</a> team
Alene L. Brennan, RYT Moderator & Contributor
<inline-mention username="CommunityMember2d187d" user-id="6893084"/> welcome to the community Pat! We're thrilled that you're here and that you're part of this conversation. Although, I'm sorry to hear that you've been living with migraine for so many years. It sounds like you've tried a lot of options and have been able to identify some of your triggers as well as some things that help to bring your relief, which is always important. I can really relate to the dance that you described with things like sleep - not too little and not too much. I'm sure others will join this conversation here but I wanted to pass along this video that I created about essential oils because I enjoy using them as well. They're just another tool in our toolbox to support us along the way, right? I hope you find the video helpful and again, welcome to the community! https://migraine.com/video/peppermint-essential-oil - Alene, moderator
LadyMcGregor Member
Oh, yes, Holly. I’ve had chronic daily migraine for almost 20 years, and I’m still playing defense. I’ve described that very thing to other doctors trying to communicate the importance of getting ahead of other painful conditions since I’ve been unable to do that with migraine. When I’m in a cycle of “Wack-a-Mole” with headache, back pain, neck pain, Dercum’s disease, etc., I get overwhelmed and medical burnout. Of course that makes everything worse. It can be very disheartening. 
1. Holly Harding Moderator & Contributor
 <inline-mention username="LadyMcGregor" user-id="4190878"/> Greetings- So good to learn more about your journey and grateful you took the time to share with us. I'm amazed you used the term "whack-a-mole" as I wrote an article on this very dynamic - perhaps it will resonate: <a href='https://migraine.com/living-migraine/whack-a-mole-chasing-freedom-from-pain' target='_blank'>https://migraine.com/living-migraine/whack-a-mole-chasing-freedom-from-pain</a>. You are right that the addition of other conditions (especially pain conditions) complicates matters so very much. We move through cycles in which we are chasing pain and we must dig very deep to move through those demands - and then come up for air for a bit before it happens again. Trying to get in front of these conditions is like a full-time job. I find it's helpful when I give myself grace - reminding myself that I'm doing the best I can given the circumstance. I picture a wave. We can either surf it- and ride atop it- or it can pull us under. Either way, the sensation is temporary and the next wave is waiting for us. So, when I'm pulled under and holding my breath as I'm getting pummeled by the wash of surf and sand, I do better if I don't fight it. In other words- my energy is best used accepting this as a temporary window. I spent years fighting that feeling- being angry and bitter about spending any time there. Now, I find my energy is better spent looking at the horizon for the next wave and hoping I'll be riding on top of that one. I wonder if any of that imagery may work for you. You are not alone in this- and I'm glad you're with us. Here for you. Warmly - Holly - <a href='https://migraine.com' target='_blank'>migraine.com</a> team
wappaw Member
I feel as if I am defending against chronic migraine all the time. I too loosely record my migraine attacks, but feel it is almost a useless event anymore. I was thinking about fighting this daily pain just before viewing your video. While my current main medications, have brought my excruciating migraine pain under “control” reducing frequency and intensity, I still live with almost daily pain. I get the feeling my current Neurologist, I have had four over 50 years, isn’t fully engaged in my treatment, other than being happy to supply BOTOX injections. I also am not eager to change current medications fearing a change could result in a reduction of control. The pain is always behind my right eye, down my neck, and into my back. OTCs have no real impact in pain reduction, and I am tentative to use my Sumatriptan as I am only prescribed 12 a month, and the potential for rebound headaches. Sorry to say, but after 50 plus years of chronic migraines, I have come to accept this pain as my normal condition. 
1. Holly Harding Moderator & Contributor
 <inline-mention username="wappaw" user-id="3905284"/> I deeply appreciate you checking in to share some of your journey here. I relate to a lot of what you shared. I also have had migraine for nearly 50 years and still live with daily pain. Glad to hear you have been able to tamp down some of the intensity and frequency of your attacks. Still, near-daily pain can be incredibly draining. Like a drain in the bathtub- our energy is never able to fill. This can have far-reaching impacts. I don't blame you for not wanting to mess with your current medication regimen. As someone who has had migraine for most of your life- you know all that is involved in auditioning new treatments. It is not a simple process and involves potentially inviting complicated side effects that can rival symptoms of migraine. Not to mention potential drug interactions with other meds you may be taking. There is a piece we have that outlines that multi-step process to trying new treatments which speaks to this process exactly: <a href='https://migraine.com/living-migraine/process-of-trying-new-treatments' target='_blank'>https://migraine.com/living-migraine/process-of-trying-new-treatments</a>. You may be interested in taking a look. I did want to mention re: the triptan limitation imposed by your health insurance - this is something our community members discuss frequently. There are workarounds to this - including using drug coupon companies like GoodRX which can honor a script for a higher quantity for a similar cost that an insurance company charges for 12. This doesn't address fears re: rebound. I have heard some doctors (including mine) who say there is more wiggle room than the 12/month limitation. Still, this would be something to discuss with your doctor. Finally, your last sentence caught my attention because I wholeheartedly believe acceptance is a huge and important part of the migraine journey. It doesn't mean shrugging our shoulders and giving up. For me, letting go of fighting and resisting this condition - after spending years feeling bitter about it- getting caught up in how unfair it feels - to instead symbolically take it by the hand each day to ask- "okay- I know you're with me- what will I learn from you today?" - That shift has been a game changer. For me, stopping the fight and finding acceptance freed so much energy for better things. It didn't stop my daily pain - it just shifted my focus up and out. So, like you, I accept I'll have pain each day- and it's more a matter of how to manage it - how to work around and with it. How have you found acceptance to work for you? So glad you're with us. Please stay in touch. Warmly - Holly - <a href='https://migraine.com' target='_blank'>migraine.com</a> team
nashville1 Member
YES! It seems that's all I do is play defense!! I wish I did have a dr that truly made me feel heard and not placated or being patronized. 
1. Holly Harding Moderator & Contributor
 <inline-mention username="nashville1" user-id="3807470"/> Oh dear- I'm so sorry to hear you are not feeling supported, validated, or heard by your current doctor. Are you at all interested in seeking out a new doctor? I know that process can be daunting. Unfortunately, there is a shortage of migraine doctors currently as well. But still, it might be worth it as the partnership we share with our migraine doctors is so key in managing this hard-to-manage disease. May I ask if you are currently seeking a migraine specialist? These types of doctors are specially trained and therefore more capable of helping us to navigate the complex neurological condition that is migraine: <a href='https://migraine.com/living-migraine/neurologist-vs-specialist' target='_blank'>https://migraine.com/living-migraine/neurologist-vs-specialist</a>. Let me know if you'd like us to send you some links to potential referrals. We are here for you. Warmly - Holly - <a href='https://migraine.com' target='_blank'>migraine.com</a> team
lindaann Member
Hi Holy, I just watched your video on playing offence to chronic migraine and I just wanted to let you know how validating it was for me. I have daily chronic migraine headache and have been experimenting with which triptans (which is the acute treatment that works best for me) gives me the least rebound as I was finding if I took Maxalt, it gave me relief but the next day I had an even worse migraine. I do find that if I take Frovatriptan, it takes longer to work but gives me less rebound. None of the monoclonal or g-pants work for me, which was such a disappointment. I do keep a journal just to make sure I don't go over 10 triptans a month but I agree it can be so disheartening. I find that acceptance that this is chronic condition that can only be managed and not "cured" helps with my expectations for myself. I have to be careful not to plan too much, to stay out of the heat and to get exercise but not too much. Such a delicate balance but it does help me to manage the daily pain levels. Thanks again for your piece, it is nice to know there are others like me out there.
1. Stuart_G Member
 <inline-mention username="lindaann" user-id="3806021"/> Hi, I also take a triptan (eletriptan or Relpax) for migraines. They have worked for many years now but I am afraid I am way over the 10/month you mention. What is the information you have that 10/month is the limit? I am currently at 24/month! (24-May, 6-June, 24-July) I guess it doesn't matter because if I don't take it I cannot stand the increasing migraine until nausea sets in and I won't let it go to where I am vomiting. They just will never go away on their own. I thought at one time I was having rebound migraines, but I can take 5 or 6 in a row (1/day) and then the next 3 or 4 days I won't have a migraine. Also, my doctor has prescribed 20/month so that's why I am curious. Thanks.
2. Rebecca C Moderator
 <inline-mention username="lindaann" user-id="3806021"/> - reading your messages above and below from Holly, I can relate quite well. It's great to hear that you've found a way to address your migraines by accepting that it's a chronic condition and understanding that can only be managed and not "cured." I have such a difficult time with this. I get rid of an episode and do everything right so it never happens again, thinking this will make a difference. Then ... wham ... migraine hits again. I am at the point where now I say WHEN a migraine hits, not IF a migraine hits. With this thought, I am learning this debilitating neurologic disorder is chronic, unpredictable, and only manageable, and I cannot be rid of it forever. I'm also learning that having realistic expectations for yourself can help in coping with this chronic illness. I tend to overdo things constantly bringing on episodes. I used to think this was just random, but now see I have to limit myself sometimes and go easy instead of gung-ho through the day. I think my FOMO may be leading to this train of thought. Slow but sure, I am sitting when tired, do not plan as much on a specific day, and leave the dirty dishes and laundry, all to have balance in life. Prioritizing self-care, not being too hard on myself during challenging times, and allowing for downtime to heal and rejuvenate are all vital in managing my migraines. Thanks for the reminder. Today I woke with an "I can" attitude, but know this will bring on the pain. I adjusted this to an "I should" mindset and have found balance in nurturing myself and getting things done. Wishing you the best. Rebecca (team member)
Stuart_G Member
Thanks for the video, Holly. I have to agree with you that keeping a journal is daunting, but I have it on my phone and basically just enter the times I take an abortive (which is 100% of the time I get one) so I can discuss the numbers with my doctor. I have tried many things on the preventive side with zero success. I just tried weaning off amitriptyline as they put me on it to see if it helps. If did for a while but not now so I went off it slowly. Complete disaster! The migraines got worse, and I felt like I was living in a drunken hangover all day. I also could not sleep as amitriptyline helps you sleep. I have resigned myself to the fact that I am going to be living on eletriptan (and amitriptyline) for the foreseeable future. 
1. Stuart_G Member
 <inline-mention username="Holly Harding" user-id="3755969"/> Hi Holly, yes, I agree, I have not noticed rebound headaches with eletriptan. I now use GoodRx to purchase my eletriptan. It is cheapest getting it directly from the GoodRx pharmacy and they have not had an issue with the quantity. My doctor suggested increasing the dose of Amitriptyline and I will talk with him about that in September. I tried going off it and things got worse, so I guess that's not an option. I tried Topamax and Aimovig with no success. Some of the newer meds are so expensive they are just not an option. I have had pretty good luck with Relpax (eletriptan) and if I take one at the moment I realize I am getting a migraine within an hour I am usually ok. It used to give me side effects of sore muscles but not anymore. You mentioned triggers. I know a couple that are definitely triggers for me. I have looked into what I eat, the weather, light, sound etc. Stress is definitely one of them. Another trigger is going to the movie theatre. I cannot come home from the movie without having a throbbing migraine. Anyone else have this? The smell of burning wax but other than that I think I get them because I get them. Sincerely, Stuart.
2. Holly Harding Moderator & Contributor
 <inline-mention username="Stuart_G" user-id="9754968"/> Hi Stuart- Glad the Eletriptan works so well for you. I also rely on it greatly and agree that timing is of the essence regarding its efficacy. I also use GoodRx to afford it. Just this morning I was once again on the hunt for a new pharmacy to find a better price as I've noticed the price is going up at the pharmacy I've been using for the last several years. I found I can find it for half the cost at a different one. That's the only downside of GoodRx- the way we have to go from one pharmacy to another to get various scripts- it can make our prescription shopping feel like a full-time job. I thought you might find this resource on triggers interesting. It mentions that 70% of us mention stress as a trigger: <a href='https://migraine.com/migraine-triggers' target='_blank'>https://migraine.com/migraine-triggers</a>. So, we aren't alone on that one either! And yes- movies! I actually made an entire video on this topic! Perhaps you'll find it will resonate with you: <a href='https://migraine.com/video/navigating-movie-theater-triggers' target='_blank'>https://migraine.com/video/navigating-movie-theater-triggers</a>. Let me know what you think. Glad to be connected with you- sounds we have much in common. Warmly - Holly (team member)
lindaann Member
Hi Stuart, it was my migraine doctor, neurologist who has told me not to take more than 10 triptans a month. I think they call it medication overuse headache. However, I do know a few migraine specialist who do give their patients more than 10 a month, so it is hard to know what to do. I used to take topomax as my preventative, which did work in dampening down the frequency but it made me so stupid, I could not work, so I weaned off it. It is such a battle that sometimes I just get so tired of it all. 
1. Melissa Arnold Community Admin
 <inline-mention username="lindaann" user-id="3806021"/> Thanks for mentioning overuse (or adaptation) headache, Linda! It's an important part of the conversation, although there is some disagreement in the medical world about whether or not it's a "thing," and to what degree it can affect people. For Stuart and any others that might be reading along, here's an article that explains more about MOH: https://migraine.com/headache-types/medication-overuse-rebound And I hear you on Topomax! We have heard so many people share that it makes them impossibly tired, stupid, etc. But for others it's a key part of their migraine treatment ... it's all a matter of what you feel comfortable with. Sometimes, you just have to scrap it and start over. Sending hugs to you! -Melissa, team member
Stuart_G Member
Ok, thanks. Yes, I have tried several things like Trokendi and Aimovig also even the Cefaly electric shock headband with no luck. I tried the needless injection of Sumatriptan, but the shot hurt worse than the migraine! I think the real issue is they don't really know what a migraine is. They have theories and they have found things that sometimes work but they are still a mystery. I tried one (can't remember which) but it made me dopey and felt weird too. Sometimes the cure is worse than the disease.
1. Nancy Harris Bonk Moderator
 <inline-mention username="Stuart_G" user-id="9754968"/> I hear how frustrated you are in trying to find something that provides relief from migraine disease. I wish I had a good answer for you other than the trial and error process of migraine medications. I don't want you to lose hope, as there are over 100 medications, supplements, devices, complementary therapies and lifestyle modifications that can be used to manage migraine disease. Most of us are on a combination of these - I sure am! Forgive me if I've said this before. Take a look at this when you get a chance; 1) <a href='https://migraine.com/blog/migraine-preventives-start' target='_blank'>https://migraine.com/blog/migraine-preventives-start</a> One word of note - when we start new medications it can take up to 90 days at the therapeutic dose before we see a reduction in attack frequency and severity. Believe me, I understand how frustrating this it! Have we talked about seeing a true expert who treats migraine/headache disease rather than a general neurologist? If we have, again, forgive me. General neurologists may be fine doctors however it's difficult for them to be experts in one disease state as they treat so many including stroke, MS, epilepsy, Parkinson's and more. Migraine/headache experts have extra board certification in headache medicine and treat migraine and headache all day, every day. They can have a huge impact in our care and I can tell you first hand these experts have made a positive difference in my quality of life. Let me share some of our articles on this topic: 2) <a href='https://migraine.com/living-migraine/evaluating-doctor-patient-relationship-right-fit' target='_blank'>https://migraine.com/living-migraine/evaluating-doctor-patient-relationship-right-fit</a> 3) <a href='https://migraine.com/living-migraine/how-to-evaluate-doctor' target='_blank'>https://migraine.com/living-migraine/how-to-evaluate-doctor</a> 4) <a href='https://migraine.com/blog/really-find-headache-specialist' target='_blank'>https://migraine.com/blog/really-find-headache-specialist</a> 5) <a href='https://migraine.com/living-migraine/hiring-right-doctor' target='_blank'>https://migraine.com/living-migraine/hiring-right-doctor</a> <a href='https://www.ucns.org/Online/Online/Diplomate_Directory.aspx?hkey=f8f00552-f924-4ef6-a9bb-6023b1cd341b' target='_blank' rel='noopener noreferrer ugc'>https://www.ucns.org/Online/Online/Diplomate_Directory.aspx?hkey=f8f00552-f924-4ef6-a9bb-6023b1cd341b</a> I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator (team member)
2. Rebecca C Moderator
 <inline-mention username="Stuart_G" user-id="9754968"/> Migraines can be quite mysterious. I find it so disheartening when treatments have their side effects. It's crushing to hope a treatment will work and it adds more or worsens symptoms, and challenging when the search for relief ends up causing discomfort. I truly hope you find a solution that works for you soon. Sending healing thoughts. Rebecca (team member)