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What life?

What life?

I’m 43. A young 43. For all intents and purposes I look totally fine. I’m seemingly healthy and take pride in my appearance. But I hurt all day, every day. And it has taken over my entire life. For the past 15 years, my severe headaches/migraines have become increasingly worse to the point where I’m in agonizing pain more than I’m not. I have a job that I love and a very active and involved family. Both require me to be present most days. But all I want to do is ice the back of my neck/head and sit in a dark room and cry.

I used to be social. I used to have a lot of friends who included me in on everything. I have become so reclusive and antisocial because I hate the idea of being miserable [out, at a party]. So, I just don’t. The invitations have dried up. I feel sorry for my husband who definitely misses his fun wife. I don’t even drink anymore because a migraine will immediately ensue. I miss having cocktails with friends.

Doctors have thrown up their hands. I’ve tried meds (preventative, triptylines, opiates), I just started birth control pills, injections (prolo, cortisone, botox), manual manipulations, biofeedback, holistic treatments, herbal remedies, pinterest hacks, I have a medical marij card and smoking definitely helps with the pain but I can’t exactly do that at work or at my kids’ school functions.


I’m depressed. I’m exhausted. I feel sorry for myself. I’m well aware that there’s no relief in sight. There’s been 15 years of failed attempts to quiet the pain. The double edged sword is sharp….be in pain 24/7 or try to obtain narcotic pain relief. If you do obtain it, you run the risk of becoming dependent (looking back, I probably did). So choose. Live with chronic, often-debilitating pain in your melon—whilst still managing to look completely healthy. Or, numb the pain and open yourself up to all the challenges that follow addiction and dependency. Not to mention, the terrible feelings and shame that I feel when I’m simply trying to escape the pain, via meds.

I’m getting blow back from my family. I’ve recently gotten some comments about how I’ve changed. Um, yeah. My pain is at a 6-7 most days. That’ll change a person. And when it’s not, I’m in a fantastic mood! So, then I probably appear to be a faker. My husband is too nice to admit that he’s losing patience, but he is. Life goes on, without me. I’m afraid my kids (14 & 11) will look back on their childhood and will remember me missing so many fun things because mom had a headache.

I’m new to this site. I just wanted to vent to anyone who’d understand. If anyone feels compelled to reach out….if for no other reason than to say, “I get it.” I would so, so appreciate it.

I’m feeling pretty hopeless and so depressed about the possibility of another 40 years of intense pain.

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

  • somethingthatworks
    2 years ago

    Being more than open to unconventional treatment modalities, I have found some things that work. Only one thing works the vast majority of the time, though.

    I have taken Kali Bichromicum homeopathic remedy and that’s helpful, but not 100%. I have gone to the chiropractor to offset the anterior head carriage that plagues people who are on their computer 40+ hours per week, and that helps, but not 100%.

    I exercise, I sweat, I try to eat healthy, I avoid triggers (perfumes, stress are my worst). 40 years old, been getting migraines since mid-twenties. I get them once weekly at least. They used to always escalate over a 24 hour period, couldn’t function without extreme pain, then they would end in vomiting to the point of dry heaves. Sometimes the recovery would be instant after vomiting and sometimes it would take a day or so.

    But most of the time now, when I feel the beginnings of the migraine, I make a pot of coffee as soon as I can. Then I do what my wife and I refer to euphemistically as a “coffee treatment”, aka a coffee enema. About 80% of the time it stops the migraine in its tracks. 15% of the time I have to repeat the treatment once or twice, and 5% of the time it doesn’t work. That’s usually because I couldn’t get to the coffee in time. There is plenty of documentation on the internet on how to do this. It used to be a standard treatment at places like the Mayo Clinic. But it has fallen out of favor with conventional medicine. But how well has that worked out?

    It’s a little embarrassing, but it works for me.

  • carol
    2 years ago

    For so many years I thought I was alone in this struggle. I am so thankful for the internet. I felt like I had to be loosing my mind with how much pain I am in daily. So many doctors, pain management, tests, meds, physical therapy, stretching, yoga. Nothing has worked. I will go weeks without leaving my home. I used to have a great smile,. I have lost that smile.
    Now I am on several migraine support pages. I am still in pain but knowing there are others like me helps.

  • LJSF
    2 years ago

    You have described my life as well. I gave up on a career long ago. My children are older, 28 and 24. The younger one has special needs, so has taken up much of my time. He is doing well now, at a great day program and I have lots of time on my hands. So I have gone back to my old hobbies, sewing, quilting and generally getting creative again. But with daily migraines I don’t get much done. I have seen many neuros who all end up saying there is nothing they can do for me. Have been on countless meds, Botox,acupuncture,chiropractic. Even had surgery, nothing works anymore except certain Triptans. But of course those are limited. I literally don’t know what to do. I am afraid to plan anything. So depressed.

  • LJSF
    2 years ago

    I didn’t mention, I will soon be 60 which I can’t believe. It just makes it all the more important to find some solution.

  • Michele
    2 years ago

    You are describing my life perfectly! My kids are 17 and 13 and I take a daily combination of meds that keeps the pain just under threshold to allow me to work. The offset is that I give up some cognitive ability with that and it’s getting more and more difficult in this fast paced work place to keep up. I use every ounce of energy I have to appear normal at work that I have nothing left at home. I too have given up social life and am afraid all my kids will remember is mom had a headache. She goes to work every day why couldn’t she take an aspirin?

  • sdouglas
    2 years ago

    I just joined this site. I get it!!!! We are the same. Eight neuros and five years of bull hockey. I’m at the Botox point now. I’m past desperation. Hang in there! I’m in tears right now just knowing that we are not crazy and NOT alone. Luv and hugs.

  • Joanna Bodner moderator
    2 years ago

    Hi there sdouglas,
    We are so happy you found our site & that you have joined us! Definitely do not give up hope for better days ahead!!! We appreciate you taking the time to comment and show your support. Let us know if you decide to try Botox and keep us posted on your progress. Please always feel free to reach out and visit our Facebook page if you would like as well.

    Wishing you a gentle night.
    Joanna (Migraine.com Team)

  • Macbeck
    2 years ago

    Oh honey, I get it! I pushed my body until it just quit on me. Now I’m on disability – never would I have thought that. I’m alone a lot. My nearest child lives 2-2 1/2 hours away. Yes I have friends, they check on me, but it’s not the same.
    Yup, I get it!

  • Sylvia T
    2 years ago

    i can relate to your story, same boat, it took me decades to somehow accept it…with the help of a good psychologist. And yes – chronic migraine takes a huge toll on the relationship! I am 50 now and still struggling, husband does. It really “get” it. I feel so sorry for you, you are not alone!!!

  • Sylvia T
    2 years ago

    Does not really get it….spelling error, sorry.

  • Andreadmf0902
    2 years ago

    I’m right there with you, I’m 39 and have had constant migraines for 13yrs. There isn’t anything I wouldn’t try or wouldn’t do. From my eyes to my toes. Hilariously every time some body sees something on TV they call and tell me. I really appreciate it. I know my son suffers being just 14 he has seen way to much, as has my husband he isbeyond Amazing. We can’t go to certain places because of the foods I can’t eat. Or loud places or certain stores because of the strong smells. So I really understand. I AM SO SORRY JUST KNOW THAT YOU ARE NOT ALONE

  • Kmk752
    2 years ago

    I am in the same boat and really relate to your story. Especially the sentiment at the end where you mentioned imagining another forty years of pain. We all just want to be “normal”, whatever that means. I think I’ve accepted that I have a chronic condition and I will never be like everyone else. It isn’t just part of who I am now.

    I had my first migraine around age 10 and I remember the sensation. They remained painful but manageable throughout childhood. Around age 19 or so they became brutal and worsened significantly. I always blame myself somehow. It’s very depressing and lonely. I’m now thirty and migraines have taken over my life the past decade. I’ve spent so much time, money, and agony trying to fight them.

    The good news is you can still have your version of a good life, which it sounds like you do have. This is a chronic condition that is full of ups and downs. Your story touched me and I really do get it, hang in there.

  • aliCat50
    2 years ago

    I am not a veteran to the migraine pain like you. But I can relate. So many things I used to love to do, I now avoid. Some of the things my husband and I enjoyed doing together we don’t do as often (fishing and hunting) because too much sun and noise make me suffer a few hours later. I used to love to go shopping but now I dread it because of the lights and smells. An hour later I am in misery. I hate how this chronic disease has changed me. I am the same way when I am pain free, over the moon happy. Sometimes I feel like I have major mood swings because of this curse. I use ice, aroma therapy, manipulation, a preventative and an abortive. Am still researching other things and treatments. I give you my best wishes in finding relief!

  • jjb
    2 years ago

    I can relate to your story. Sounds like my life. It is truly heartbreaking to have my kids see me down all of the time and unable to participate in activities. I just want to be able to go out and do anything I want to do and not have to worry about how I will feel or if I will have to cancel. I have also tried everything. One thing you may have not heard about is dry needling. Select Physical Therapists do this. I DID notice an improvement when I did this. Look it up! Next on the list this the daith piercing! Has anyone had any success with this?? Yoga makes a huge difference in my back and neck. Hard to do anything when you feel miserable but doing Yoga regularly may help! Best wishes on finding relief!

  • tlocker
    2 years ago

    I’m ten years further down the road and know some of what you’re feeling (8-17 days/month of migraine) even WITH a neurologist who specializes in migraine that I trust. I, too have a great husband, but he’s also tired of us trying to get a ‘romantic weekend’ that just not happening. I recently lost another friend who took my frequent cancellations too personally, and I’m SO blessed to work from home where I can limit light and screen size/time that helps. On the upside, your children are growing up with an understanding of chronic illness. I say this as a good thing because the one shining light of hope in my life right now is my Supervisor. Her mother has severe migraine, and because of it she has been supportive and even encouraged me to apply for FMLA benefits. My migraines are familial; my Mom became a nurse and is the most caring person I know. Don’t let guilt about your situation with your children take over. My 93 year old grandmother still feels guilty about the weekends her kids lost; as do I — but they gained as well. We can help the next generation understand and provide support. I hope you find relief and let go of the guilt. It’s not your choice to have this illness.

  • Eric
    2 years ago

    I certainly get it. I’m in a similar situation, with chronic migraine. I take Maxalt almost daily and have rebound headache because of that. Now, I try to get out of it but cannot stand the pain and I want to keep working at least half-time. And I want to be part of the life of my family. If I hadn’t my family, I can’t see how I could go on living. Anyway, we must all hang in there! Sooner or later there will be better medicines or treatments!

  • Leslieb73 author
    2 years ago

    To whomever referred to me as “brave” for going without meds. Oh, no…I have meds. But they’re never enough. I’m on Topamax (doesn’t help). I’m on maxaalt, it works pretty well but it’s short lived and my doctor will only prescribe 18 per month so I don’t run the risk of a rebound headache. Same true for tylenol 3. My doc has had me on 30 per month for about 8 years. Anyone who’s had a migraine knows how effective 1 or 2 tylenol 3 is (not terribly, considering the tolerance I’ve built up). I understand and appreciate the recent, careful management of narcotics, as I can see where I’d be at risk for abuse. But my alternative is debilitating pain, almost constantly.

    Which is why I’m here. WHAT DO OTHER PEOPLE DO???

    I’m perfectly ok with letting relationships slip through my fingers, mainly because I don’t have the energy to care anymore. I never used to be like this. Too busy hurting to care.

  • zvaresk
    2 years ago

    I of course have tried many things over the years, but I have been astounded at how effective CBD oil is (for me anyway), as both preventative and as a pain killer. It is NOT a panacea and once a migraine is underway it can cut the pain considerably. When nausea is an issue (I hate nausea almost more than pain).. I put a tiny amount of Rick Simpson oil, sublingually (This is medicinal cannabis which contains THC as well as CBD) THC is more of an antiemetic than CBD. I don’t particular like the psychoactive effects of THC, luckily these can be minimised by micro dosing and taking more CBD oil (CBD decreases THC’s psychoactivity, but still allows pain and nausea relief ). I proffer this as a medical Dr who can no longer work due to depression and chronic migraine.
    Chronic illness absolutely forces you to keep an open mind.

    Along with CBD oil I take 1200mg of curcumin, x1 capsule of magnesium threonate, plus daily I take Vit D 5000units (sublingual) and offset this largish dose with vitamin K2

    and of course identifying ones triggers (sometimes easier said than done)..for me: STRESS, too much exercise, insomnia, red wine (very bad…also makes me wheezy)

  • Kristy
    2 years ago

    You are absolutely right it is exhausting. I too have been to several specialists, and it’s trial and error and trial again. Overcoming insurance and financial obstacles along the way. I was able to get Rx from my Dr for toradol inj. This keeps me out of the ER, and I have my husband give it to me. I only need it maybe once a month, usually around my period. But if you have been to the ER you know the drill, noisy, bright lights, the same coctail and usually includes phenergen. Gives me piece of mind, just knowing it’s a fall back. But still it can cause MOH or rebound. Seems like that’s all the drs preach these days. I too sometimes wonder how other people do it.

  • PDUB
    2 years ago

    I understand, as do lots of others. You’re right-we’re hard to spot sometimes as we look so normal from the outside. Why do some of us have this horrific pain? I guess there are lots of things that are worse-but it sure doesn’t feel like it when it’s happening, which for me is now about 4 days out of 7. I don’t know how you do it without meds. I don’t think I’d be here today without mine and I freak whenever I think about the day that they no longer work. I am on pain meds and preventatives which I wonder why I bother with them-would the last three days of 7 be taken over by the evil M? I can’t even cry-that will bring on a migraine. Medicine has come a long way from where this was just 10 years ago-but still so far to go. I say all of this to say that you’re NOT alone. I hope it helps to at least know you’re not alone but are VERY brave.

  • Leslieb73 author
    2 years ago

    Wow. I’m just speechless at the outpouring of support that has ensued from my post. Truthfully, when I’d originally joined migraine.com, it was so that I could look for resources and possible remedies/treatments. Not support. For the first few days, while I was scrolling through all the stories, I was so depressed. Instead of reading about medications and treatments that I’d not yet tried, I only found stories that were similar to mine. Which, of course, aren’t helpful. I found myself saying, “So, this is it? THIS is just going to be my life from now on? Agonizing pain with no sign of relief?” I was frustrated.

    But after your comments began to flood in, one after the other I began to realize that ‘Yes. This IS it.’ However, although I can’t change the migraine or the pain, I can change my response to it. It’s probably true that my pain becomes worse when I react poorly to it, by way of crying or venting desperation. Doesn’t help the pain much, but still.

    Sometimes I wish that my friends and/or family would experience a migraine just once (is that terrible?) so they can understand the intensity. But also, I wonder if someone else had the exact same pain that I felt, would it hurt (them) as much as it does me? Or is my pain imagined to be much worse than I think it is? And to be perfectly honest, I wonder if some friends/family think that my pain is ‘in my head’ too.

    My constant quest for relief has consumed me. It’s caused friction in some of my relationships. It’s reduced me to tears and depression, simply out of frustration. Recently, my sister told me–verbatim “You’ve changed. Why don’t you make an effort to try and help yourself. Have you tried to see a specialist? I found some online in your area, might be worth your time. Your kids (they’re 14 & 11) don’t need you as much as you claim they do, so stop using them as an excuse and maybe visit University of Michigan (3 hours away). Maybe they have a program that can help?” I begged her to share with me what amazing things U of M has to offer. Tell me, I’d love to hear about it.. Go ahead. I’ll wait. Then she tells me they can “track my migraines.” Oh. Awesome. A 6 hour round trip to keep a migraine diary! Isn’t my sister so helpful and well educated? SERIOUSLY???

    Now, keep in mind, I’ve been dealing with this for 15 years. I’ve seen specialists. Several. Repeatedly. I’ve tried everything. Repeatedly. Then she suggests I “make an effort.” Oh. Ok. What a good idea, thank you so much for your judgement!

    Grrrr. So, I thank you all. Thank you for your listening ears and your compassion. Thank you for your understanding. But for reals, this is it? No relief, huh? Just different levels of tolerating it?
    🙁

  • tnmommy
    2 years ago

    Um, yeah, having a family member so helpfully suggest that I go “get some help” and see a specialist. I can relate. Realistically, the healthy can’t fathom that there really are chronic illnesses that may not get any better.
    Acceptance doesn’t mean giving up. I also have autoimmune disease. I would be wasting the few things I still can do if I spend my waking moments counting what I can’t do anymore. Acceptance doesn’t mean you won’t still get angry either. Just try not to stay there. You can make a list for your sister of the specialists you’ve seen and the meds you’ve tried. Might straighten her out.

  • deadpool
    2 years ago

    Leslieb73 you are not alone. I empathize with your chronic pain and feeling guilty for not being “the person that you were prior to your migraines.”

    I am grateful for this website that it allows members to express their frustrations and to give knowledge that we are not alone. Thank you for sharing your story!!!

  • Kristy
    2 years ago

    I get it, it’s crazy how much your story is just like mine. I am 44, been suffering with chronic migraines for 16 years now. I have been on disability for 3 years. Quit my job after 14 1/2 years. I too have been through meds and doctors. Depression, anxiety, isolation, and hopelessness. I find myself treating less and suffering more, fear of medication overuse. So I stick to my icepck and dark, quiet room and I have learned to tolerate a higher level of pain over the years. Nausea seems to be one of my big problems, hits at night and I can’t sleep. But again could be a side effect from the topamax. Not to get off topic, the point is, this website is the only place I find people like me with the same issues and I can feel my kind of normal. If that’s possible. Bless you all and hope for more pain free days or at least anything under a 5… I’ll take it.

  • LizzieLou
    2 years ago

    You are not alone.
    I get it.
    My migraines have evolved and changed over time.
    They started when I was about 13. I think I’d had them before that (Mum called them sick headaches) initially they were linked to my hormone cycle and I was always very sick. I had phantom smells and some visual disturbances. Regular as clockwork, two a month, two days each. Very painful, but temporary.
    When I was pregnant they seemed to diappear completely and didn’t return til I stopped breastfeeding. It was a good indenture to have kids. I had three.
    Gradually, over fifteen years they got more frequent, with more aura symptoms and they lasted for a long time. I now have a diagnosis of hemiplegic migraine. I rarely have a symptom free day, though the pain is very variable. Your pain sounds dreadful. I think my worst symptom set is the effects on cognition. I get severe aphasia and my memory is dreadful. I forget what I am doing, where I am, who people are, the names of my kids, the names of my grandkids, the names of anything (today couldn’t remember potato)
    If I have been struggling with aura symptoms, including one sided weakness and slurred speech as well as visual, hearing, smelling hypersensitivity and all the other stuff, I begin to stammer. The stammer can be awful, completely debilitating. I’m a teacher. A teacher who can’t speak. So I’m taking early retirement.
    I trust that this phase will pass. Something will happen and they will lessen or change or go away or just enter a new and different phase. I’ve read that’s some women, post menopause, have much reduced symptoms. Well I’m past that, but not much, so everything is crossed.
    Hang in there. This too shall pass.

  • mliss s
    2 years ago

    Yep.. I’m 44 and this past fall I got so distraught being in so much constant pain, and wondering if this was what the rest of my life would be like. I’ve had migraines for about 12 years. Your experience and story very much resonate with me. Sadly, I have no answers… but I really am thankful you shared. You aren’t alone on this migraine forum.

  • Joanna Bodner moderator
    2 years ago

    Hi there mliss s,
    We too are very happy that YOU have shared your feelings with us! It truly does bring much comfort to others knowing they are not alone. Thank you for being such a supportive member in our community. Lets not give up hope to one day having all the answers! 🙂
    Take care,
    Joanna (Migraine.com Team)

  • amace
    2 years ago

    You could be writing about me. I am 43. I have been suffering with migraines for 15 years. I have two beautiful children ages 12 and 16. I have a wonderful, compassionate husband who is getting to the end of his rope. My phone does not ring anymore. I stopped being able to fake it about 2 years ago. My friends do not understand when I have to cancel so most of the time they just do not ask anymore. It is a lonely, isolated life. I do not like that this is where it is. For my children. For my husband. For myself. I went on disability in September and am no longer working. My headache specialist/neurologist said there is nothing more to do. Hopefully this new drug in the phase 3 drug trial will be the answer. Great! If the are no problems and the FDA approves it on a fast track it will be 2019 or 2020 before it is available to the public.
    You are not alone. Some days are really bad and the others, you just have to keep pushing through. Because on that one or two maybe three days a month that I feel really good, man those are GREAT days.

  • ChoctawCharli
    2 years ago

    Oh, boy! Do I get it!! 30+ years ago I was forced to take a medical retirement from the military after 17 years of service. I had suffered a sever blow to the head resulting in a TBI that started my migraines. As the scar tissue built up over the years so has the frequency and the severity of the pain. I am now considered 100% disabled by them. My daily base rate is about a 6. A 4/5 is a GREAT day! I can get things done, visit with my grand children, even shop. But I certainly pay for it the next few days. My husband passed, but when he was alive, I thanked God daily for his understanding. Although, he did occasionally mutter under his breath if I had to wake him on a week night to take me to the ED. LOL But, he was with me the night they first started and was with me as the got worse. We were married less than a year when I went on the deployment where I got hurt. Suffice to say, I miss appointments (canceling at the last minute), church, birthdays, etc. I get it. I REALLY, REALLY get it! I to have run the gamut of meds, and treatments. But, we keep trying, I keep trying! It is all you, we, I can do. The alternative is NOT an alternative. Try for disability. Get a Disability Attornery from the git go as they WILL initially turn you down. The commission is worth it. The use the SSD to get counseling. It SO helpful to have someone to talk to, in person. To cry, to let out those feelings of frustrations! Migraine.com us a WONDERFUL resourse! I kid you not! But, in person is even better. I am fortunate that the military takes care of my needs. But resourses ARE available for civilians as well. You just have to look, and look again.

  • mrsdegray
    2 years ago

    I absolutely get it. You have said what I have been feeling for the past 2 years. My life is no longer my own and it is a daily struggle not to let myself sink into a dark hole and never crawl. I work very hard to focus on the positives in my life and keep looking forward. I have run out of options with meds and doctors. The headache specialist I was seeing has actually told me I was a really tough case and is no longer seeing me. The local neurologist said “It’s a marathon, not a sprint” I wanted to punch him in the face. I’ve been running this marathon for 28 years…I’m worn out!

  • Joanna Bodner moderator
    2 years ago

    Hi mrsdegray,

    Wow, I am so sorry how difficult this has been for you and hard you have been fighting to find effective care AND treatment! I know it must be terribly hard to stay positive and keep pushing ahead, but please know are you are not alone in this struggle. One of our contributor’s, Kerrie shares her experience and explains this in her article “When My Doctor Gave Up on Me”. This same contributor discusses the same sentiments which you have expressed “Do you feel like you’ve tried everything?”.

    Thank you for taking the time to comment and please always feel free to reach out for support.
    Take care,
    Joanna (Migraine.com Team)

  • ssw7ir
    2 years ago

    You are not alone and please do not give up. I am almost 60, have had migraines since 35 and now they are mostly daily. I usualy have some kind of pain and lots of days are like you, a 6 or 7 and its a real bummer I know. I have cut a lot of things out of my life too but I have also learned I can tolerate a lot of pain to do things I want to do one of which is be with my grandson. Keep trying, look for new meds or meds you havent tried. I am taking petadolex and flexeril muscle relaxers right now and they help. Trying to get off ambien, which I take when migraine stops me from sleeping and I found Sleepwell at Walgreens which seems to be helping. Keep on keeping on girl. Our lives are worth the fight. I believe that healing will come. Please dont ever give up hope. Remember too that drugs and supplements ypu may have tried before might work now so its worth the effort to revisit medications from the past. Love and best wishes to you! and remember you are not alone, we are here and we know your pain!

  • melmo
    2 years ago

    Boy does this sound familiar. Living with chronic migraines is a struggle most people CANNOT EMPATHIZE WITH.

    But its just a headache! You mean you cant work again? Have you tried this or that? Yes i have tried everything thank you very much. What i hate the most is ‘the look’ when you mention your fighting yet another migraine.

    Hang in there

  • SilverPhoenix13
    2 years ago

    You are most certainly not alone. I’m only 30 years old, but I have been getting migraines since I was about 7 or 8. At first, they were episodic, but they were diagnosed as chronic when I was 17. Even then, though, they weren’t nearly a bad as they’ve been this past 5 years and they’ve only gotten worse. In the last month, I’ve had the new experience of stroke-like symptoms with my migraines. I have had a daily migraine for about a month and a half, now. I have not worked since December 27th. Last year, I was lucky enough to be covered by FMLA, but I did not work enough hours in the last 52 weeks to qualify for a renewal of my FMLA and I have had virtually no PTO to speak of for quite some time. Frankly, I’m surprised I haven’t been let go, but I’m sure it’s coming any time in the near future.

    In the last couple weeks, I have started having the new experience of stroke-like symptoms. I had a feeling that I would eventually reach this point because I do get the numbness/tingling in my fingers and sometimes part of my face. In the last couple weeks, however, I experienced complete weakness and numbness on one side of my body – usually the left. In fact, I’m feeling it begin in my left arm right now and I’m debating on having my husband bring me to immediate care.

    Speaking of my husband, he tries to be as supportive and understanding as possible, but lately, I can tell it’s starting to frustrate him because he’s the only source of income, at the moment. He’s pushing me to try going to work with the words, “Sometimes you just gotta push through”, which, I’m sure you know is no easy or sometimes even possible task. I am seriously considering applying for disability because I just don’t see things getting better.

    I am so different from the person that I was 5 years ago or even 3 years ago. It is frustrating and heartbreaking. I just want to be who I was. I want to be able to do the things I want to do and be able to work the way I used to work. I don’t want to cancel dates with my husband because of a migraine, I don’t want to disappoint a friend I offered help to, I don’t want to be this unreliable person I’ve become.

  • Not-Again
    2 years ago

    Hello. You are not alone in the loneliness migraine life can lead you to. I understand every single word you said in your post and have experienced it all – minus having children. I am so sorry you are feeling this way and wish I could tell you it will get better and change for you. Some migraine folks I’ve met have found that their migraines stop – none of them can tell me why or how. So, I get it. I’ve got it. I’m glad you found us here and welcome you to your new extended family.

    I am 50 years old, an established professional, and yet just a few weeks ago got a written warning at my job because of absences or tardiness due to migraines. That really hurt and I threw myself a pity party. The thing is, unless you live this life, no one can understand what you go through, what you give up, what you miss out on. They don’t understand and when you try to educate them, it doesn’t always help.

    This community at migraine.com does care and we stand with you in this life none of us asked for. I hope you have or will find solace here in the community and the informative articles. Even when are lives seem defined by migraines, remember your worth is multitudes more than what you feel. This is a medical disease and we all want a cure. Please don’t beat yourself up about everything, that doesn’t help. Just be who you are and I’ll be praying for you.

  • Holly Baddour moderator
    2 years ago

    Not-Again- I just wanted to chime in and say thank you for taking the time for writing such a heartwarming response in reply to this article. You just proved your point about the beauty of the community that IS migraine.com by offering unsolicited support, warmth, kindness and understanding in one fell-swoop. You are so right, when words of understanding come from people who are living the reality of migraine, they come with so much more weight than when they come from others who are trying their best to understand, but no matter how they try, they just can’t know what it’s like. I’m so sorry to hear about what happened with your job giving you a warning based on the challenges that migraine cause. I had to stop working 6 years ago (i’m 45) due to chronic migraines and remember when my vacation and sick bank ran completely dry due to migraines. I just wanted to thank you for offering such kindness to others and to remind you that we are here to offer kindness and support to you as well! Thinking of you, with gratitude. Holly Baddour (migraine.com moderator)

  • Holly Baddour moderator
    2 years ago

    Leslieb73- I get it!!! i’m so glad you shared your story. you are not alone! i’m 45 and have two kids, 15 and 17, and while i have had the same fear that they will remember a mom less involved than i would’ve hoped due to the pain, I ultimately believe that their biggest takeaway from growing up around migraines will be compassion. I believe i gets embedded into their skin. However, if you see that they are struggling in a real way, you might seek some support in the way of a counselor to help them navigate the challenges of the situation.

    The rest of your story also resonates so very deeply with so many of us who have chronic migraines. It is a difficult reality to see our former selves dissolving. A new definition of self might emerge in its place. Someone less focused on doing, and more on being: https://migraine.com/living-migraine/not-a-human-doing-a-human-being/

    When up against a sense of hopelessness and depression, be sure to seek the support and care you so richly deserve. Migraine.com offers a great network of support and then there are local therapists you might seek out to provide in-person warmth and opportunities to process on the complicated emotional journey of life with migraine.

    I’m thinking of you and so glad you chose to write such a moving piece for the site! Keep it up! Warmly, Holly Baddour (migraine.com team)

  • Falcon6
    2 years ago

    Oh, I get it. I have been dealing with chronic migraine and chronic headache for 20+ years now. They have changed in intensity and frequency over the years and the symptoms are ever changing. The past 2 years have been 2 of the worst & the feelings of guilt, depression and isolation are getting worse. I am no longer the outgoing, social, fun person I used to be. I have always done my best & been quite sucessful at hiding my pain behind a smile, but my puffy, red, glassy eyes give me away in a heart beat and I am finding it much harder to smile. My family is super supportive though and I am very thankful for that. Take care of yourself – we may find help yet!

  • Holly Baddour moderator
    2 years ago

    Ms. Piggy, Thank you so much for sharing your story. It’s amazing (and ever so challenging) how migraines can continue to evolve and become worse even when we think they are at their absolute worst. You sound very self-aware about the ways that the condition is impacting your emotional life. Many of us just react and become angry, defensive, and cut ourselves off from our worlds without really taking stock of why. You clearly have great insight about the fact that migraines are causing this process. It’s an interesting point about hiding it. A couple of our contributors have written about doing so You might find this article interesting:https://migraine.com/blog/another-take-on-faking-it/ I’m so glad you have a supportive family. Please keep in touch with us! Warmly- Holly Baddour (migraine.com moderator)

  • Tamara
    2 years ago

    I’ve only been 2 years with that pains (28 years) and totally understand. But your post does give me some hope that I will survive the years …. quite a few days and after particularly bad weeks I’m not sure how I survive one more moment – let alone another day or year like this.

    I also use marijuana but in oil and tincture form – this is more expensive but might be an option for those times you cant smoke (I cant do the smoking – hate the smell, the whole idea of it …). The tincture are a tiny 25-30ml bottle and you put 10 drops under your tongue.

    A psychologist with expertise in chronic pain has helped me get through the months of developing severe depression and anxiety when I was getting suicidal thoughts every day. And I’ve turned into a loner because of my 5 years in school so I have only one friend that lives far away. Social interactions are very important no matter how bad they feel and I can say first hand if you lose them the pain does become worse.

    look up some communication articles on here (I’ve been reading for a year and still finding very useful points) on how to explain your condition (and which people to) and the adaptations you need for your friendship to be successful (cocktails at someone’s house to limit the lights/noise and where you can have another drink but still be present; not staying out late to keep your sleep schedule consistent – I recently had to bail after a bridal shower and not head out dancing because it was “past my bedtime” …. but my close friend knows my struggles and all I got was some extra hugs).

    And don’t feel you cant say to someone – I feel like sh@# today – I’m pretending not because I don’t want everyone to feel bad for me but today is hard. Don’t say you are fine everytime … I have realized all us migraine people are insanely good actors (we should all get Oscars!!!). But just telling someone you are having a harder than normal day helps.

    Hugs. ….. and make sure you see a headache specialist – there is always something else you can try. 🙂 And I’m half an hour past my bedtime now so not editing … hopefully its not too bad.

  • Mariaici
    2 years ago

    hi,
    What kind of marijuana oil did you use? Is it CBD? Did it help?
    I tried some Kratom but it made my blood pressure go up.
    I’ve been suffering for 30 years. I stopped working a year ago and was denied
    Long term disability. I don’t know what I am going to do now.

  • Luna
    2 years ago

    “I so get it”. The energy it takes to keep at it like you do saps the body of its resources over time. I thankfully am retired so do not have the pressures you have but have been there. Our lives take a lot of stamina and courage.

    Hopelessness and depression are feelings that will overwhelm one if allowed. They especially take over when one is overly tired from pain and the exertion of trying to keep going. There are suggestions on how to accept and deal with emotions. Each of us has to find what works for us. Take care of yourself. Courage.

  • Nonster
    2 years ago

    I say ditto to all of the comments above. I’m bedridden at the time with my intractable migraine and have been here for a month. I can’t even go outside because of the triggers. I’m in a suicidal thoughts mode right now because this is not living life. The only thing that keeps me here on this earth is my son.

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