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I Am At My End

I have been dealing with migraines for about 31 years now. I am at the point where I just can’t take it anymore. I joined this site because the first thing that jumped out at me was someone’s story (which now I cant find) saying they cant take it anymore. I just started crying. Since I’ve gotten older they have gotten progressively worse and my doctor just seems to want to push medications down my throat, they never make me feel better and I am having a hell of a time trying to function at work dealing with new meds and a migraine strike. I’m just tired…tired of missing out of my life because I have to slow down and put my migraine to rest literally.


I don’t understand why this had to happen to me…?!! My dad had migraines all his life as well eventually he passed from MS my mom keeps freaking me out because she says the migraines are a prewarning for an autoimmune disease. (sigh)

I have gotten to the point in the past 2 years where I have become anti-social and the “bubbly me” has been defeated by the constant monster…just needed to vent (waving white flag)

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Comments

  • tucker
    4 months ago

    I hope you have found comfort in all these comments. That you know we are all in your shoes at one time or another. Me too.

    Let’s just say I found my new peace in doing something for myself. Just like CobyMeg. Though certainly not as brave! Or maybe brave in a different way.

    Personally, I am trying Improv and going back to tutoring and helping adults with their reading skills. They are both very different outlets. The Improv is fun and helps me to not be me. The tutoring helps me to see the very real struggle other people face in this world.

    Find something YOU want to do. Join a prayer group, learn a new language, plant a garden, feed the hummingbirds and sit near them, volunteer somewhere, learn to paint, try chair yoga or meditation, whatever will distract you and take you away from the pain, the worries of the day, the stress of life for an hour.

    You’ll be amazed at how much you look forward to it!

  • CobyMeg
    8 months ago

    Me too. 54 years (but some long breaks in between, one of 12 years). All medications failed, including Botox and Aimovig. But I have turned away from medicine and am pursuing exercise – at age 79. I’m going to compete in Masters Athletics. I won’t let the beast win. (Current migraine of 65 days duration). Don’t wave the white flag. Forget about your parents. Fight the bloody monster. Try something different as I am.

  • DinaMay
    8 months ago

    I know just what you mean. Unfortunately if you wanna get off the migraine train, you gotta hire a replacement. And you never gonna find someone willing to take that job!

  • mommathate
    8 months ago

    I’ve been there. I dropped out of “life” to try and stave off the pain…so much so that my friends stopped asking me to go with them to do things. So that really sucks since mine did get worse, and I had to get more creative with trying to get rid of them. I sooo hope that your mom isn’t right about the MS. Let’s assume she’s wrong. mom’s overreact right? :/ I pray you find relief. LESS.

  • hobbitgirl
    8 months ago

    Oh, how much I can relate. (I, too, am at the 31 year mark. )

    I’m not sure there are any chronic migraineurs who have not considered the question ‘to be or not to be’ after days, weeks or relentless, debilitating, all-consuming purposeless pain.

    My own daughter said she would not fault me for checking out, if it came to that, as she saw how much I suffered.

    But every time I reached that end of my rope, I reached out…to a new doctor, to online research, to a clinical trial. And found there was always a shred of hope, something new to try.

    And while none has rid me of almost daily migraines, the intensity and duration have lessened, which increases hope…

    What helps each of us is different, but I can tell you some things that gave me levels of improvement, in case they might help you

    – gave up caffeine. I know it helps some, but for me, it created a re-bound migraine cycle….migraine first thing in am and all that. It was a month of hell in quitting, but worth it. I still wake with migraines, but not nearly as severe. I drink instant decaf now.

    – cut way back on painkillers, which can also have rebound effect. Limit tylenol, advil to 1-2x/wk, imitrex to 1x/mo. Yes, that means suffering through, but intensity is decreased.

    – got off all other things they threw at me. Felt so much better overall.

    – Quit working. This resulted in biggest improvement. With that change, I could do following:

    -In morning, if wake with one, stay in bed til it passes, which might be 11 or noon, but then rest of day may be pain free (if I get up while still have it, it will last 12 plus hours).

    – When feel one coming on, can stop everything, lie down, meditate, etc and that can ward it off.

    Maybe if you work from home, you can work around that, but quitting work reduced overall stress, too, which helped. Instead of going on disability, I started renting out rooms in my house, and can at least get by that way.

    – I also figured out that when I wake, I take a bunch of big, deep breaths, and that can help a forming one go away.

    – when I have one, sitting very, very still, not moving head, helps. I can read, watch quiet tv that way.

    – Meditation helps me…reduces pain, helps me cope, or both. Guided imagery can help me, too, sometimes just for moments, sort of transcending the pain, but at least it’s something….

    -No one can tell me why, but my migraines often go away when I am out on long walk/hike–sometimes return as soon as back in car or house. Maybe because my walks are like meditation, focused on here and now.

    -I also do much better up in Blue Ridge Mts, at about 3500 to 6000 ft. Seems counter-intuitive, since lower air pressure hurts many of us. Often it takes 4 days to get free of the migraine I arrived with, but then it’s great. Come back if there are tropical storm remnants, or I go down to town. Some think its the trees, oxygen to CO2 ratios, or something about windiness and temperatures– I always do better in windy weather, and when temps between 50 -80F, low humidity.
    -reducing chances of ANY kind change–food, schedule, lighting, noise, etc.

    – I am trying B2 now. I’ve tried vitamins before–a multivitamin will give me a headache–but learned not high enough dose. I think it might be helping. At least, not hurting. And might be reducing cravings for carbs.

    -I will try the higher dose of quick-release magnesium, too…later…

    – I was in clinical trials for the new CGRPs/monoclonal antibodies, and highly recommend, if you can afford. I hear they are about $500/mo…a lot, but weigh cost against not working at all, or…being dead because you can’t take it anymore.

    – some people have told me certain specific strains of pot help. I dont live in a medical marijuana state, so don’t have access to specific strains, but it could be another light at end of tunnel for some.

    – I have this idea that God gives us things like this as way to help us see world/life/selves differently. (Example–taking sight from mean old woman to help her learn to see with heart.) Maybe for me, I placed to much importance, arrogance, on intellect, learning, brainpower, need to let go of that, find another way….or just slow down, not be such planner, type A doer, fixer…I dont know, but I like to think that once I figure out their purpose, and make the needed changes, they will go. Maybe not, but thought of this keeps me going….

    I know others have lits of suggestions. While I sometimes feel to tired, discouraged, to tey, when I reach end of rope, when Hamlet’s question rings in my ears, it’s nice to have one more thing to try, one new seed of hope…and to know others like you are out there, doing the same. You are not alone.

    (Sorry for the long ramble. I’ve been tuning in to this site a long time, never contributed. This is about all I have…..)

  • pigen51
    8 months ago

    Hobbit Girl,
    I to have been a long term sufferer. Married male, 58, and have had migraines all my adult life. I know how everyone here feels, as I too have times when the depression that can be related to migraine has held onto me tightly.
    I find that it is sometimes helpful to know that others understand exactly what I am going through. Especially since it is an invisible disease.
    My wife just got over a year of fighting breast cancer, and has been determined to be cancer free. Of course that is the best news I could ever get. And yet, in a way, I wish it was me who had the cancer, and not migraines. At least then, I could point to an x-ray, or a blood test, and say, ” You see? I was not nuts, or being a big baby.”
    I know you all have felt this as well, and I am sorry that you all have to go through what you do. If I could take you pain away and put it on myself, I probably would, just because I know how tough it can be. And I am the fixer type. I want to fix whatever problem someone has, to make them all better. The problem is, for many of us, there is no easy fix. There is only coping as best we can.
    I know that if it weren’t for my wife taking care of me, I would have not been able to make it. I was glad to be able to be there for her over the past year of chemo, radiation, and surgery. I am retired on disability, and so I have been able to take her to doctors appt., and all of the other appointments that she had.
    I also believe that God is in our lives, and not only has a plan for each of us, but when we are at our worst, and perhaps even weeping, He weeps with us. There have been a few times, when the pain, and the emotional toll that migraine takes on one, has led me to a brief bout of tears. I have tried to hide that from my peers or my family, since I don’t need to put a burden on them more than my illness already does.
    My faith in God is possibly the one constant that I have had, all my life. Perhaps one day, I will relate some of the things I have gone through that have led me to trust in God completely. I will say, that I was saved at a young age, and I know it was real, since my family didn’t attend church, but I was changed on the inside. I was the kid in school who all the teachers and administration liked. And I have a twin brother who was always in trouble, but I felt like I was protected from that stuff.
    I can only wish for good days ahead for you and I encourage you to write on here whenever you feel like it. Sometimes, it is helpful just to know that someone who really GETS it, will read your writing, and will know just how you feel.
    I wish you and yours a Merry Christmas, and a Happy New Year. May your days be pain free, and your cup running over with happiness.

  • ujijin
    8 months ago

    I’ve been experiencing migraines for a very long time. ALL OF THEM have been cervicogenic.

    That all was complicated immensely when I came down this May with what appears to my doctors to be rapid-onset rheumatoid arthritis.

    While one commenter has discounted the link between the two, there is data in the relevant literature on the comorbidity between them: 61% of those with one condition also have the other.

    In my case, the RA and/or the DMARDs I have begun taking are triggering migraines at an astonishing rate: Six weeks of migraines with only three days without them. The RA appears to have moved up into my C1-C3 vertebrae, propagating migraines as the brainstem is just in front of them. Triptans only work–as many here know–if I take them right as the prodrome occurs. The problem is that the migraines start very early in the mornings…I wake up with them, already too late.

    I empathize completely with the original poster: I am desperate. I’ve used up all of my sick leave, accumulated over 26 years, and am burning through those triptan pills. My career has been completely ruined, and I may lose my job as well. This is living hell. I have seriously considered pulling the plug–MANY TIMES–but have resisted those impulses ONLY because I’ve considered the terrible impact that would have on my spouse, sons and parents. That consideration hurts almost as much as the migraines…and the arthritis pain too. PLEASE hang in there, and maybe try what I’ve done on many occasions: Pray, meditate, and let the right folks know if and when appropriate; most in our lives really have no idea what this is like.

    Be very blessed and of good courage. Above all, may you find peace that’s truly peace, and life that’s truly life.

  • drcolgreen
    8 months ago

    I understand completely been dealing with migraines for the past 30+ years. The past year really came to a head when the meds I was taking no longer worked (self-disagnosed myself all those years ago) and I went to a neurologist who put me on Zonisamide. She started me on the lowest dose 25 mg once a day and kept increasing it until I no longer have migraines – 1 100mg capsule per day, plus I take 1000 mg of magnesium per day. This works for me. It took a long very painful, frustrating year to get to this combination, but I’m pretty much migraine free now and have my life back at 60 years old.

  • maxgordon
    8 months ago

    First, migraines are not a warning of autoimmune disease. They are two separate (and debilitating and depressing) issues. I know: have both chronic migraine (since I was about 6 or 7, and I am 60 now) and rheumatoid arthritis (have for several decades, but diagnosed only when I was in my 50s). Two different illnesses with different causes. My family tree is filled with people with migraines (my grandmother, like me, got them multiple times/week for her entire life), but not autoimmune diseases—I guess I was the lucky one.

    I understand the whole “can’t take it anymore” feeling. I have passed through that stage many, many times. (Once—worn down by the pain and triggered by a bad medication interaction coinciding with an intense emotional loss, I even tried to end it all, but was thwarted). I won’t lie and say “it gets better”—it might not. You might, like me, remain fairly removed from your previous life and the lively distractions of the outside world, with the accompanying triggers of scents, noise, lights, and stress. It suits me, as I have never been particularly outgoing.

    I will not offer advice, but only say what has helped me through the darker periods. (1) Find the best medical resources you can (preventatives don’t work for me, but I do better when I take magnesium, drink a lot of water, and avoid my known triggers like fluorescents, strobing lights, getting overheated/overtired/dehydrated, perfumes, etc.), and keep near to hand Imitrex or some other rescue med, plus a “migraine hat” (made to hold ice packs). (2) Remind myself of the things that bring me joy (my son, my partner, my dog, reading, writing, swimming, puns, crosswords, great coffee) and distract myself from the things that don’t. (3) Make sure I have a handful of close, understanding friends/family members who understand invisible pain and illness and don’t take for granted that I will be available despite my best efforts. (4) Don’t feel guilty for things I can’t control. (5) Always have a loving pet.

  • grama5
    12 months ago

    I totally understand I have had migraines since I was 18 and am now 62 I too am so tired and want to just give up , I have no life and I’m always feeling guilty about being unavailable for daily life!!!

  • TracieL
    1 year ago

    I’m can truly understand why you feel as you are at your end. My migraine journey started when I was 12 and at 64 they are still with me. After being “ let go” from numerous jobs I was able to get disability. It is nice to have the income but it doesn’t help with my social life or the migraine pain I have almost daily. Like you, my doctors have tried every medicine and combination of medicines they can. I have tried the holistic approach also. I have pages of foods I eat as well as what I drink. I keep track of the weather as barometric pressure changes can effect mine. I have a wonderful husband who is always by my side in this journey. I do have a few friends that understand and support me also.
    I can say that looking in the past at the things you have missed doesn’t help anything. Keep your eyes and thoughts towards the future even if it just a day at a time. My friends and family have learned that spur of the moment and unplanned is how I have to live.
    Don’t keep asking why me because you will never get an answer…..just keep looking and moving forward.

  • IntricatePurple author
    12 months ago

    Tracie..did you say you started having them when you were 12 and at 64 your still having them. Oh No! I dont have a loving husband to help me with the blow by blow, and thankfully California has FMLA otherwise id be out of a job as well. Sigh. All I can say is WOWSERS!! Thanks for the advice and thanks for the comment. Feeling not so alone on my island of pain. Many well wishes to you.

  • poetdoll
    1 year ago

    My comment may come a bit late but still wanted to weigh in! When I need additional support, I log into the Chronic Babe website (as in chronic illness babe!) This website and resources on chronicbabe.com are to help young women (and people in general) to have amazing lives despite chronic illness. There is a blog, a forum, videos and Jenni Grover, creator of the website is a chronic babe herself and is gut level honest about her journey. I encourage you to check it out! I have learned a great deal about pain management on her website as well!

  • Joanna Bodner moderator
    1 year ago

    We appreciate you sharing this helpful site and I am so happy to hear it has helped you such a great deal. Wishing you a gentle day. -Joanna (Migraine.com Team)

  • maureen52
    1 year ago

    I dont want to act like Little Miss Sunshine and I understand that at some point, many people with chronic pain have wondered why they should go on. Medically, there are so many new treatment in the pipeline now–a better time to have this disease now rather than when your Dad suffered. But I have read somewhere that migraine-sufferers are often susceptible to the placebo effect. For example, a person who has just taken a drug may start to feel better before the drug has had the chance to be absorbed into the bloodstream. I think that means that if you scratch a person searching for an answer to chronic pain, you will find an optimist. But it also means that the mind is more powerful than we give it credit. There are studies regarding chronic pain and practicing controlled breathing, positive imagery, biofeedback. I know I personally have pushed one attack back through use of these techniques alone. Try to find out about biofeedback–something to give you a sense of control over the migraine that seems to be controlling your life. Prayer is important and it can be helpful to pray for others when in pain ourselves–to take you out of yourself a little. I am not trivializing. I have been fortunate that my migraines did not go chronic until I was 63. I don’t know what I would have done if I was new in the work-force or in the dating game or a young mother. And I have done a LOT of whining about my migraines. And yes, your friends do get sick of hearing from you. Migraine is a bitch and it is completelly underrated. I have been fortunate lately to get some relief from Botox that I did NOT get at my last clinic–and also to start to get some relief from Aimovig. I hate to jimx myself and say this, but you need hope bad! There are a lot of us out there that care about eachother. There are also chronic migraine Facebook groups. Lots of apps available for mindfulness now. I hope you can pull back from your despair. We all go thru despair at times if we are honest with ourselves, I think. Please keep reaching out!

  • sick-of-it
    1 year ago

    Dear friend,
    As I sit and read your comments, I am quietly sobbing on the couch. Your words sound like what I would have written, if I was the sharing type. Please don’t misunderstand. I don’t mean to take away from your own private story. But I empathize with your exhaustion and your desire to give up the good fight. I feel like I’ve hung in there long enough for everyone else. It hasn’t been for me for twelve years. My doctor just told me there is nothing more they can do, or prescribe, or try that can help me. How’s a person suppose to feel after hearing that?
    So….that being said, if you ever want to swap stories of misery and woe with someone who truly gets it and is a willing audience, I will be that for you. If you’re like me, you’re unable to say some of these things to your ‘people,’ because of you or because of how they are responding. Not the case here.
    Tranquil thoughts….

  • SkiingIsBelieving
    1 year ago

    Hey, if you didn’t see my comment below about the Stanton migraine protocol, check it out! It has helped so many who had been told “there’s nothing more we can do.” Even small changes she recommends can make a huge difference. Good luck!

  • mammapeaches (Susan McManus)
    1 year ago

    Hello my fellow migraine warrior!! IntricatePurple, I am so glad you found us! We are a great forum to vent or get knowledge. There are so many treatments out there and none of us will fit a cookie cutter program.
    I wrote an article recently (for this website) about my journey: “Finding my Migraine Puzzle Pieces”. Maybe something about my story will help you? I, too, have felt that rock bottom desperation and then slowly my puzzle pieces began to come together ❤️ I always think about that song from Rudolph: Just put one foot in front of the other…

  • SkiingIsBelieving
    1 year ago

    I am sorry you are feeling so desperate. I urge you, in addition to checking out the tips below and getting a specialist, to check out a book by Angela Stanton, PhD called Ending the Migraine Epidemic (search on Amazon.) Her theory (based on science, her personal experimentation, and anecdotal data of others in her protocol) is that all migraine is caused by electrolyte imbalance–this is the elusive trigger that kicks our brains into the cortical spreading depression that experts agree is the cause of migraine pain. She also theorizes that our genetic migraine component affects many factors including carbohydrate metabolism, hydration and neuron activity. It’s a very involved protocol that requires dietary changes, monitoring of blood sugar and other factors, but it produces incredible results. A month ago I was so discouraged about my worsening episodic migraine and feeling hopeless as medications don’t work and leave me with a host of side affects, and all doctors seem to push meds without listening (even my touted specialist). My migraines aren’t gone, but I can abort them and prevent them much more often using the insights I learned in Staton’s book. My prodrome and postdrome days are down by a large margin, and I feel better in between headaches than I used to. Best of all, I feel some semblance of understanding and control returning–not so random, waiting to be struck down. I was skeptical at first that food, water, salt, potassium and magnesium could “fix” my brain, but I have felt nothing but proof that she’s on to something. She encourages skepticism, and then walks you through her answers and theories. Especially if you feel totally desperate, do yourself a favor and check it out. You have nothing to lose. Her Facebook support group is full of people who were at the end of their ropes, now off medications and living fully active lives. Best of luck to you!

  • Marina
    8 months ago

    SkingIsBelieving,

    Thanks for this information. I have literally tons of books about migraines yet I did not know about this one. Without even buying it yet or reading it yet, I believe her. I believe it is an electrolyte imbalance that triggers a migraine. I have a very regimented diet now that treats food as the enemy and have no soy, (that is difficult since they put it in EVERYTHING, even canned tuna), no preservatives, and restrict salt in everything. This of course leaves me with very little to eat unless I prepare the food myself. I have stopped eating in restaurants and have given up all processed food and probably eat only 10 different things. What we eat affects our blood sugar but by monitoring it in such a rigid way, the results have been astounding for me. This has produced incredible results with the frequency of my migraines. I have stopped giving myself Imitrex shots after 19 years which have damaged my veins since it works by constricting my blood vessels. (I would call it my miracle drug above all others.)

    I have had migraines for 44 years. I have lost years in my life to the pain, nausea, and the inability to walk outside without dark glasses in the day or on even in the night because of the harsh LED street lights. My hearing is so acute so sounds are painful and I think I am lucky in that my hearing is so strong even as I age due to the sensitivity of my migraines.

    Hydration and keeping my body from over-heating is paramount to abort an on-coming migraine and yes I can do that now! My migraines are not gone, but the frequency has changed and I can go days without one because I was waking up with one every single day.

    This is profound for me because by following a strict diet I have control over my body temperature and blood sugar. I also drink a lot of water when I am trying to abort my migraine so that I am fully hydrated. I can control my body heat and what I put into it although I have no control over the weather because barometer pressure changes can cause migraines.

    I agree that food, water, salt, potassium and magnesium all play a part in this and making sure it is balanced in my body has been key to conquering on-coming migraines.

    Lastly, no one in my family has ever had migraines or even headaches. I do not fall into that genetic make-up arena, but I did require a hysterectomy at 22 so something was not right with my genetic make-up. Therefore, I was so determined to try and stop the pain and the loss of my life due to lying in bed, in the dark, with ice in my own handmade ice pack, praying the pain would stop.

    Thank you again for suggesting this book. I know I will purchase it immediately and it will add to my knowledge of migraines. I have learned through my journey of my migraine experiences that everything we do or don’t do to our bodies, and everything we do or don’t put in our bodies affects all parts of the human body. As Jack LaLanne once told me when I saw how fit and strong he was at 93, “You are what you eat!” and that definitely describes how I control and abort on-coming migraines. It takes determination and willing to forego many foods but food is the engine that makes our bodies run and the imbalance many foods today cause, can contribute to how many migraines one gets or not. But it is an easy choice for me. I just got tired and weary of the pain and disability they cause. Plus I wanted to live.

    Marina

  • Bombus
    1 year ago

    You have my full sympathy and sending lots of cyber hugs. The thing about migraine is it can change how it manifests, hang in there and it might change. I am waiting or mine to change – I am so chronic at the moment I totally get where you are coming from. But we have to keep hoping that something somewhere will change and we will have a bit of our old life back. Remember how strong you are to cope with this in the first place. xxx

  • Anne
    1 year ago

    I hear you. 37 years of migraine for me. It’s really hard to keep going when it feels like my whole life is on hold. I’ve found that sharing about my migraines has helped – I’ve discovered people at work who suffer and all my experience with trying different things is not wasted. I can share my experience with people who haven’t had migraine as long. Migraine is not a gateway for an autoimmune disease – at least not from what I’ve read, but it doesn’t hurt to get tested. I did, just to make sure the fatigue I was experiencing was only from migraines. I’m sorry you’re at your wits’ end. I hear you.

  • Holly Baddour moderator
    1 year ago

    Hi there- I just wanted to ring in to say I’m so glad you shared how you are feeling. I’m also very glad you’re here. You are not alone in feeling defeated by migraine. This thriving and wondrous community is teeming with migraineurs who are navigating various stages of grief when it comes to living with this disease. Denial, anger, bargaining, depression, and acceptance. We’ve all been or ARE there. And the processing of it is not linear. Many times it is cyclical. We may think we’ve got it all figured out – and accepted migraine in our lives- even finding ways that it has enriched us, and then we go through some aspect of the grief cycle all over again.

    I’m so glad Nancy encouraged you to look into finding a migraine specialist. That is awesome advice. These are the doctors who are the best trained to help with this disease.

    You couldn’t be more right about the incredible and widespread impact that migraine can have on every aspect of our lives- it is huge and it can be hard. The disease often does evolve (as you describe) so it is a moving target that is therefore even more challenging to treat. And the “why me?” question looms constantly.

    That said, I wanted to add that this is a particularly hopeful time when it comes to new treatments being on the horizon. In addition to Botox for migraine, there are two newly FDA approved migraine treatments that you will want to discuss with your migraine specialist (once you find yourself a good one ASAP). First, is Gammacore: https://migraine.com/?s=Gammacore+ and the other is CGRP: https://migraine.com/?s=CGRP . When you have some time, take a look at those articles and see what you think.

    It’s been years since we’ve seen this kind of forward motion in terms of new migraine treatments and these two hold particular weight in terms of hope.

    Lastly, be sure to shore yourself up with emotional support when you hit lows such as these. You’ve done a wonderful thing here in reaching out by posting this piece. Doing so shows a great inner-strength. As you’ve already done, you might continue to read articles that resonate with you, post comments- go to the facebook page and connect with other migraineurs. It can really help to be reminded on a regular basis that you’re not alone as the condition can be so isolating. Search for and join online migraine support groups (or in-person if you can find any in your area). I happen to be of the mind that it can’t hurt those of us who are living with chronic pain to have an established relationship with a therapist. This doesn’t mean seeing someone on a regular basis – it simply means considering finding a professional with whom you can talk and connect- making that connection so the counselor knows who you are so that when/if you hit a low, that resource is a phone call away. Finally, if you ever feel like giving up, please make a call to this hotline: 1-800-273-8255 or you can chat with them online at http://www.suicidepreventionlifeline.org.

    Please know we are here for you and will be thinking of you. Let us know if there’s anything you need.

  • rikntracy
    1 year ago

    Please let me know if the new drug helps you! I understand how you feel – like you’re in prison and being tortured at that. I tried everything over the years and all I could do was try and cope by taking tons of Imitrex. This sounds crazy, but I am actually having to adjust to being normal. This is the first time in my adult life that I feel “normal”.

    I hope it works as well for you as it has so far for me.

  • IntricatePurple author
    1 year ago

    The Imitrex pills and shots do not agree with me. They either make my headache worse or give me heart palpitations that are scarey within themselves. I have been on the botox regiment for the past 3 and a half years but it appears my headaches are changing and I am not getting the “better” days like in the beginning. I am glad you have a solution that is working for you. Yay! Ouch. ugh.

  • tlocker
    1 year ago

    Like others on this post, your writing reflects my feelings so often. In the past 4 weeks I’ve missed 10 days of work, a friends birthday party, and weekends with my husband. And I’m one of the fortunate few who finally found a doc willing to work with me on adequate meds. Can’t tolerate triptans, so
    big bunch of meds out of the mix. So, can’t really plan anything for fear of an attack, and feel like my life is so stuck. I’ve been through every new med plus Botox, nothing seems to really reduce them. Starting CGRP with some distrust mixed with hope. I’ve lived this way so long I honestly can’t imagine a migraine-free life anymore. May we both find some relief, or somehow hang onto hope through the new meds coming online.

  • mrst53
    1 year ago

    I take an older med-Fironal. It takes about 30 min to work.

  • twobassets
    1 year ago

    Hi there. I have felt the same way and have over the last 50 years tried everything but Botox. Like you the last few years have been worse and then worse again. Yesterday I decided to give Botox a go and my headache doc plans to start in August. Hang in there. Migraines are no picnic and you will find great support here. If you haven’t tried massage therapy or acupuncture it’s worth a shot. It isn’t a cure but it can help you relax and feel more calm. It’s part of my regular routine.

  • Nancy Harris Bonk moderator
    1 year ago

    Hi IntricatePurple,

    Thank you for sharing your difficult journey with us and never worry about venting, we all need to do that from time to time and this is a safe place to do so.

    Migraine is a genetic neurological disease on it’s own – not a precursor to any other disease. Does that make sense? There are diseases that can be comorbid with migraine disease, but that doesn’t necessarily mean you will have any of them. Have you had a chance to discuss this concern with your doctor?

    It’s not easy living with chronic migraine, you’re not alone. In fact it can be downright debilitating, exhausting and isolating. It’s hard to participate in life when we are in pain all the time.

    I wonder if it’s time to seek out the help from a true expert who treats migraine disease and headache disorders? I’ve been dealing with chronic migraine for over 22 years and am currently working with the 5th true expert, he is a keeper! It can take years and years to find the right medical team I’m sorry to say. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. You may want to take a look at this information on how these true experts are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/
    and https://migraine.com/blog/really-find-headache-specialist/.

    We’re here for you, please let me know how I can help!
    Nancy

  • IntricatePurple author
    1 year ago

    Nancy,
    Thank you for all the info, i am definitely going to reach out and look for a “true expert” in this field, its crazy but I seriously thought my neurologist was helping me but then i started pushing the questions and asking the unforeseen and her answers were lets switch medications and I go along with the program because shoot, who doesnt want to feel better. But I cant do it anymore i need some real life resolve to this situation. A headache specialist huh? hhmmm I am all in.

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