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A Moment of Much Needed Community Venting

A Moment of Much Needed Community Venting

Recently, one of our patient advocates shared an emotional video of her venting to the community her frustrating morning with migraine. While it is great to try to be as positive as possible, everyone needs time every once in a while to just let out their negativity. In response to the candid thoughts in the video, we prompted the community to take a moment and vent together. Here are some of your heartfelt stories and struggles that we wanted to share.

“I would have to say that I miss out on a lot of extended family functions. I can deal with the pain, because it is most of the time, but lights, talking, and some smells are too much and I can’t attend a family get together. I am so tired of missing events, missed a wedding a few weeks ago, and also missed some work. Today, I am trying to relax and take some of my other meds so this one will go away and I can go to Thanksgiving dinner”

On the really bad days, I start to panic. I start thinking this is never going to end, I’m going to get another one tomorrow, the day after tomorrow, the day after that, and so on. I don’t have a life anymore; it’s completely dictated by migraines. I don’t go out, I don’t have friends, they got tired of asking me to do things and me canceling because the migraine was too bad. On the really bad days, I think even death would be better than this no life I live”

“I’m sick of listening to myself complain. Can only imagine how my husband and others feel. I honestly feel like a burden and I wouldn’t want to be around me. I’m having trouble seeing the good or happiness in anything. Just over it. Over trying meds that make you feel like crud, procedures that only make it worse. Was always the one who told people and myself to look at the positives and now I only see negatives”


“Thanks for the space to vent – I’m tired of it all too today. I’m tired of the war between feeling lazy while resting and feeling miserable while pushing through. I’m tired of the daily migraines that never quite get to zero, of apologizing for missing things, of maintaining hope when so many treatments have failed, of being strong when I’d rather be in bed, of trying to differentiate between migraine fatigue and depression fatigue. I’m so close to finishing my master’s degree but migraine makes it all so incredibly hard. I’ll go back to being my optimistic, driven self tomorrow. Thanks for the reminder to really experience and acknowledge our suffering instead of skipping past it and trying to fix it right away, I actually do feel a tad better now. Hang in there everyone!”

I started back to work part time after being on leave and had two good days only to be hit with this week-long migraine. I wish my co-workers knew I’d give anything to be back there, to have my personal AND professional life back. I’m trying. My life is so small right now. No one would want this”

“There’s so much I could write about the utter frustration of a lifetime of migraine, but I think what’s bothering me most right now is the utter lack of comprehension and understanding of the majority, not just the society generally, but even (ex) close friends, relatives and doctors. The only doctor I ever saw who really ‘got it’ had severe chronic migraine herself and so did her kids

“I live in perpetual fear every day, never knowing if it will be stolen by a migraine. I fear going to events because I don’t know if I can follow through the whole thing without getting a migraine. Every morning, I wake up and ask myself if I feel a migraine coming on. I never know when I’ll be attacked by this lurking monster”

Venting can be so healthy in moderation, so continue to share your much-needed vents with us as the time comes when you need to just let it all out. Please remember, you are not alone. Our community is a safe, caring, helpful, and receptive place for your struggles, and we all want to help in any way we can. Also, if things seem to ever get to overwhelming, take a look at some of the resources listed within this article which lists many other supportive outlets.

Comments

  • dusthim
    3 years ago

    After seeing a seventh neurologist, with all of them providing failed treatments, again I feel judged and like a victim because she is telling me she is going to limit my prescription med that is the only thing that aborts severe migraines that can last days without them. She insists that I haven’t been ‘compliant’ because the nortriptalyne she prescribed before really didn’t work. I just wish that there was a physician who knew something and just didn’t keep prescribing the same things and won’t admit that they don’t work. Meanwhile, it’s suffering, suffering, and more suffering.

  • DonnaFA moderator
    3 years ago

    Hi dusthim, we’re sorry that you experienced this. You may be interested in reading Is It Time For a New Migraine Doctor? for help connecting with a headache specialist in your area.

    Thanks for being part of the community, and joining the conversation. -Warmly, Donna (Migraine.com team)

  • Ditzy
    3 years ago

    Well after reading these posts i know im not alone in a virtual world. I feel alone in my world. Im surrounded by a family who love and care. Im asked how i am feeling. Alright, so so, half about not great are my choice of words for not wanting to discuss. Sometimes i feel so sad, sad from loss, change, guilt,fear and lack of control. Its hard to accept that my weird migraine has no rhyme or reason. Acceptance has improved my handling of the beast i live with.

  • chaselife
    3 years ago

    Forget my story, long and harrowing.
    I would just like to understand why in Canada you can not see a migraine specialist unless you live in Ontario or Alberta? I live in British Columbia, near Vancouver. We have Neurologists. Seen 5. No help. I think after getting by life with chronic migraine for 25 years, maybe I could be seen? But no. Anyone in this community have any suggestions? To me this is unacceptable.
    Thank you for reading my rant. I am at my end.

  • lukithiaygeorge
    3 years ago

    I have lived with chronic illneses majority of my life so life being interfered with due to a bad health day or moment is almost par for the course. But the Hemiplegic Migraines which began about 6 months ago are making the other stuff look like a cake walk during a great party. As the attacks went from every 6 weeks to now everyday for some period of the day with the “paralysis” anand such I have went from cane, to walker to wheelchair in the 6 months. I am having trouble with memory and the speech issues from aphasia to stuttering at times are taking away my Independence. That is what I am holding on the tightest. Plus my husband signed on for one set of medical issues and 6 months after we married this hits. So far he has been good support and help through it but I see the toll on him and my children.

  • DonnaFA moderator
    3 years ago

    Hi lukithiaygeorge, I’m so sorry to hear that you are having these trials. It’s wonderful that you have the support of your husband. Please know that we’re also here to share support or just to listen. You may also want to visit our Facebook page if you haven’t already. We’re glad that you’re part of the community. -All Best, Donna (Migraine.com team)

  • Operadiva76
    3 years ago

    I have lived with Chronic Migraine since I was 8 yrs old. I am in a constant battle between migraine & all of the debilitating side effects that come along with it, & I am tired of the fight! I constantly feel guilty for having to cancel plans, reschedule appointments, sit out during fun times, & not “being present” in relationships because I am in too much pain, too nauseous, too exhausted, or my anxiety is too high. At times I feel like a prisoner in my own home, because I don’t leave it for days at a time. I feel most guilty for my dear husband who is a saint, & has stood by me though sickness & through “poor” health! Our romantic relationship has suffered due to my chronic migraine & all that comes with it. Most days I can’t even handle being touched, because my entire body hurts so much. The rest of the time I am too physically or mentally exhausted to be engaged. It’s hard to not want to just give up & wave the white flag & scream out “I surrender!”

    But I know that when I get bogged down in the mire of negativity, I feel worse. So I pick myself up, dust myself off, & pick up my battle sword to fight on another day! Determined to keep trying in the hopes that I will eventually find some balance where I can get even a day or two pain free!

  • Joanna Bodner moderator
    3 years ago

    Hi there Operadiva76,
    I am so happy you took the time to share this heart-felt personal comment. Hanging onto hope, staying positive, letting go of guilt…all the while feeling at your absolute worst is a fight that I so deeply wish you did not have to endure. I am so sorry you experience this. Please know by sharing this it helps so many in our community know they are are not alone in this battle! We absolutely hear and understand what you are going through.

    I thought you may find this article https://migraine.com/blog/getting-romantic-partner/ possibly interesting.

    I must say that despite these major life altering conditions, you sound like you have emotionally maintained a healthy attitude of knowing exactly what you need to do to stay in this fight! Keep it up and major kudos to you! Please know we are always here for you and always feel free to reach out for support.

    Thank you for being here.
    Warmly,
    Joanna (Migraine.com Team)

  • jcanchor
    3 years ago

    I appreciate all the comments shared. What encouraged me the most is: each of you picking yourself up after a migraine attack and determining to carry on with a positive attitude.

  • Judy
    3 years ago

    Kudos to you! We all understand the daily frustration of not ” measuring up” in our eyes and not fulfilling another obligation because of the monster that rears its ugly head has once again taken control. You have eloquently put into words what I feel daily and for that, I than you! Keep up the good work and hang in there. I have been for thirty plus years.

    Judy

  • RainyDay
    3 years ago

    “I live with a migraine 24/7/365, it just depends on how intense the pain will be and that can change at any moment of any day. Most of the time, my head feels like someone is trying to tear it open and rip out my brain, and there are some times when I wish that would happen. At least the never-ending pain would finally STOP, but I don’t want to die, just for the pain to end. I am sure all of you know exactly how I feel. This past year was a very difficult and miserable one and I missed out on all the important events that I wanted so desperately to attend, because of the migraines. The saddest part for me came over the holidays though, as I was so sick with a migraine on Christmas Eve that I couldn’t even leave my bed and had to miss the family dinner for the second year in a row. This is the only time of year that my entire family is together and I really look forward to seeing everyone so this was very disappointing for me. Also, I was still sick on Christmas morning so I was forced to miss all the day’s festivities as well. My long-suffering and incredibly understanding and loving husband spent Christmas Day with me at home simultaneously watching me sleep for hours at a time and watching sappy movies on the Hallmark channel. We ate soup and grilled cheese sandwiches for Christmas dinner. Wow, what a Christmas :0( ! New Year’s Eve and Day brought more of the same. I just get so frustrated because it is absolutely impossible to ever plan anything as I never know if I will be able to make it and based on my history, the answer is most often, not. No friends, no children and no life as a result of this unimaginable pain that seems sent from the very pits of hell!!! Why, why, why me???

  • dusthim
    3 years ago

    I can identify. If I look at my entire life, I estimate about half of it has been affected by migraines and if I don’t take medication, they just go on and on. I sympathize with you, you would think that there would be a natural cure, but everything I try works for a little while and then doesn’t. I don’t want to be on chemicals for the rest of my life, but that is how it’s looking.

  • mrst53
    3 years ago

    I know the feeling of wondering when and if today is going to be a migraine day and how long it’s going to last. My hubby finally understands, but it took him nearly 40 years and a few migraines of his own that lasted several days before he understood. Now we keep frozen dinners in the freezer, so he doesn’t have go without food to eat:-). My friends don’t understand the pain or the need to go to bed. I have an Aunt and one cousin that totally understand how I feel, because they have them. To the woman who hopes that the migraines will go away with menopause, I hope they will for you. They didn’t for me. I hoped that to. I had a total hysterectomy, but no luck. My uncles’ migraines left when they turned 60, I am 63 and I am still waiting. I guess they will go away when I die! There are days, I want to scream, but then I am afraid if do, I will set off a migraine!

  • Juneleaves
    3 years ago

    Somehow I missed this but I can truly commiserate!
    Finding a safe place to vent is so important. I believe that forcing oneself to be always be positive can be just as harmful as staying in negativity. Sometimes you just gotta be real!

    My mother has strangely become one of the few people I can vent to. Strange because she was always a very type A aloof mom, but has had her own lifelong struggles with very a serious bi-polar disorder and has become more open to talking about it with it as she’s gotten older.

    My brother and sister in law are downright dismissive and antagonistic about my many years struggle with a log-jam of chronic health issues. It’s hurtful and rather arrogant of them to assume they know how I feel or what’s best for me. When I am feeling good or manage to do something nice for myself like a successful vacation (I’ve had many many unsuccessful crappy sick ones) it becomes a personal indictment of my “lazy, poor” character. Yes, I’m on disability, but I left behind a successful career as a photographer and lost many friends when things got serious. After a number of very very bad suicidal years I’ve worked hard to advocate for myself and not remain a victim. Maintaining a low key balanced life is critical for me.

    I don’t usually wish chronic migraines on anyone but damn, sometimes I wish those two could experience not one day but a year of the crap I’ve endured. They just might have a change of heart.

    Hopefully I won’t jinx myself but I’ve been going through a pretty good spell pain-wise Unfortunately this gives me its own special form of anxiety.

    God speed and pain free days to you all

  • sarah
    3 years ago

    Reading your post makes me tear up. I wish I was there to give you a hug. I have had the same problems as you and am so tired of the same things you mentioned….losing friends, people not believing it is that bad, missing out on SO many things. I take all of my preventive meds, get Botox injections, purchased and use a Cefaly, take the recommended vitamins and switch between an ergot and a triptan as abortive meds. I find it ridiculous that after taking a fistful of meds every day, I STILL get migraines. The super painful ones are not as frequent, but it may be because I beat them back with an abortive med right away before they get bad. There doesn’t seem to be any treatment for the dizziness, vertigo, heavy fatigue, mental fog, etc. that comes with a migraine attack, called a “silent migraine”. Who knows….maybe some or all of the silent migraine symptoms may be a result of one or a combination of my meds. It’s all so frustrating and exhausting trying to think through what might be a possible solution. I waste so much time researching online to see if there is something I’ve missed as far as a solution. UUUUGGGGHHHH……I pray now for menopause to come and for me to get through with it due to the fact that my mom’s migraines ended after menopause. But before that happens, I feel like a houseplant on my migraine days….not contributing much to my family or anyone else. To end on the sunny side, I have the most amazing husband. He has never questioned whether my attacks are real or not. He KNOWS they are because he lives this lifestyle with me. He simply takes the reins and we move through the day, hoping the attack won’t last long.

  • RainyDay
    3 years ago

    Sarah, I totally understand how you feel. There is SO much to deal with and not many people understand what this is like. My husband and I have lost every friend that we had because no one understands the repetitive cancellations, the early departures from dinner or an evening out because I get sick and can’t take it anymore or the delay in responding to calls, messages, texts, because I am too sick to answer them. Add to the mix the other health conditions I have and the side effects from all the meds and it’s a ghost town around my house. Like you, I do everything possible to prevent the migraines from intensifying, all to no avail. I like your description of feeling like a houseplant. That is exactly the way I feel – useless and in need of constant attention like water and sunshine. Thank God I too have been blessed with the most amazing husband I could ever dream of. He has never once questioned my pain or made me feel bad about my lack of contribution to our household and he treats me like a priceless jewel, with love and tenderness and understanding. My Mom and Dad are also very understanding of my situation and that helps as well. I am glad I found this community, it helps to know that I am not alone in this ocean of chronic migraine pain. Thanks for sharing!

  • Juneleaves
    3 years ago

    I’m so with you on everything you said.
    Thanks for venting!

  • aks868
    3 years ago

    Thank you for the space to vent! I am so tired of my migraines and so resentful of everyone who has the time to do the things they want. I hate feeling like a burden and disappointment to my family and I always feel like I have to keep re-explaining what is going on. On top of which, I feel like I have used up everyone’s compassion and am completely alone in dealing with this obnoxious disease! There. Done. Maybe I can focus on the good stuff now.

  • Joanna Bodner moderator
    3 years ago

    Hi aks868,

    Please know you can by come by anytime and “vent” as much as you would like! That is why we & all the members are part of this community…to give you an outlet to let it all out! 🙂 Please know you are never alone.
    Thanks for being here.
    Joanna (Migraine.com Team)

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