How do I deal with this?

i have alawys been told that a migraine was a migraine no other name and no matter how long they lasted.so up till afew years back i thought i had went crazy couse i didnt have one or two day with it they lasted for a week or longer. the longest was a little over a month .

i have migraines. then told i have black spots on my brain then i have cluster migraines. no one even trys to understands how i feel about all this. i have a list of other things wrong with me and am trying to get my SSD/SSI cause its so hard to do anything even going to the store is hard cause of never knowing when it will happen. i use to have a life i was a home health caregiver , train dogs. even trained some cats to play feach. now i have to be so careful about everything cause i never know when or where the next one will happen.everyone says they can feel one coming on .i have never been able to tell so i am always afraid of when the next one will be. when i do have one my head feels like my head is boiling with heat even when the rest of my boby is cold. i have to use ice packs all over my head get in the darkest room and pray everyone else will make no noise,i even use ear plugs but even my heartbeat is to much for me to stand. no one understands any of the pain i go through or that migraines last for days,weeks or as long as a month. i go to sleep with fear and wake up with fear of the migraines and the pain that they cause but with the rest of my body pain the migraines makes the other pain worse too! i don’t know what to do about any of this stuff.how can i get anyone to feel how i do they wont even try to understand it.i am more than stuck i have been stop in my tracks. my life is over with! i can not get help with migraines and i can not get the court to understand my pain is all over my body add those two together and it is endless pain .so how am i to deal with this?with my family,friends and doctors make me feel like it is really am crazy or just all in my head.to fine this page where there are others that could understand and know how i feel gives me hope something i have not had in over 30years


Community Answers
  • LizShelton
    10 months ago

    Hello bet. I am so sorry to hear of your struggles but I can assure you that YOU ARE NOT ALONE! It is NOT all in your head, you are NOT crazy, and there are plenty of wonderful people here who fully understand the havoc migraines can wreak on your life, because we experience it firsthand. We all suffer differently, but what we have in common is that we all suffer. Sometimes it seems so hopeless – I have been there myself, so many times. I have even wanted to die in my worst moments, but ultimately I realize that this life is a gift, and I hope that somehow I can inspire others, even in some small way. I have lost a lot due to my chronic migraines, and I live in constant fear of the next attack – like you, I can never tell when they’re coming. I have no auras, no triggers I can avoid or control, and I am surrounded by people who stigmatize my condition or just don’t understand or even try to. I don’t want anyone’s pity, but I would appreciate a bit of compassion, and it’s hard to find. No one wants to hear about it, no one realizes how bad it is, and no one realizes how it impacts pretty much every aspect of your life and sets limitations on what you can do. My own mother once asked me (after I’d told her about the slew of attacks I’d had in a short amount of time), “Are you sure they’re all migraines? Maybe some of them are just headaches?” It was like being punched in the gut. I even stigmatize myself and carry around so much guilt about how my condition – something I didn’t choose and cannot help – affects others. I push myself past my limits just to make others happy or because I have to pay the bills, and I suffer for it. It’s a terrible thing to feel so trapped, helpless, and misunderstood on top of dealing with an invisible but very real and debilitating illness. We don’t “look” sick, but we are. You can’t force people to understand, but most of them are ignorant about what they have never dealt with, and so explaining to them that this is a legitimate neurological condition is often necessary. They need to be reminded that this is NOT “just a headache,” you are NOT doing this to yourself by what you eat or how stressed you get, you are NOT imagining any of this, and just because it doesn’t show on the outside that doesn’t mean it’s not there. Some people will then be supportive once they’re more informed, but others may not. Hopefully you can get a network of support in your everyday life, but regardless of that, you definitely have one here. I empathize with you and I am here for you if you want to talk or vent. I have certainly wished for that enough times myself. I have felt so alone in this, and I don’t want anyone else to feel that way. There are many types of migraines, everyone experiences them differently, and what works for one may not work for another, but please don’t ever give up and don’t ever stop hoping. You may see no end to your pain and fear, and I’ve been there too – so desperate, so sad, so angry and bitter, willing to do anything to make it stop. Migraines do tend to bring on the darkest thoughts, and sometimes they get the better of me. I have cried, screamed, hit things, even asked God why didn’t he just let me die. I am still working toward acceptance even after 9 years, and some days I do better than others, but I constantly remind myself that it could be worse and every day, even a painful day, is a gift. Sometimes I don’t believe that but I still try. I hope and pray that you find relief from your pain, peace instead of fear, and understanding from those in your life. As cliched as it may sound, we are all in this together. Best wishes to you.

  • bet author
    9 months ago

    hey sorry I have been having more than normal migraines lately. they have gotten so bad I had to have a friend move in with me. I am now lose time and days. that I can not account for don’t know if I did anything or was just out. I have the best two pit bulls ever they don’t make messes or poop or pe in the house even after days of me not knowing if ilet them out or just sleep for those missing days.do any of you know of anything about this kinda thing? I went to my doctor but this time I saw another P.A. a lady hoping that she might be more understanding not just how I feel but how afraid I am over this new thing I know I start to feel a migraine happening but then nothing after that. I want you to know having someone that really knows how bad this gets and can talk to someone who understands better than anyone else helps me to keep hope.THANK YOU!!!!!!

  • mrst53
    9 months ago

    I have been in your shoes, Bet. I have had them for 52 years and things have improved over the years. I have chronic migraines, migraines with aura and stoke-like migraines. The pain has been so bad, that I have screamed, cried and wanted to drill a hole in my head to let the pressure off.
    I use ice on the side of the head that hurts the worse, on my neck and an heat pack on the top of my head. You can also try taking a hot bath, with ice on the top of the head.
    Acupuncture does help for awhile, if you can afford it, so does massage. You might want to check into Pain injections at a pain clinic.So far nothing is a cure, but these do ease the pain and frequency. I hope this helps. Please don’t give up. Just find a good neuro and pain clinic doc.

  • bet author
    9 months ago

    anything that might help gives hope where before I had none! I am willing to try!! thank you!!

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