Is anyone status migrainous? or has migraines over 100+ days


Community Answers
  • JoshsMom
    9 months ago

    My son has had a headache every day of varying intensity since December. He is only light and sound sensitive when his pain level reaches 9!or 10. He has learned to function at a 5. I’m curious, he is 17 and an avid video game player. I can’t understand how staring and concentrating on a screen doesn’t increase his headache. He says it helps him to forget about the pain. Does anyone else experienced this? Escaping into an activity to not think about the pain ? Unfortunately, for a teenage boy, it also looks like avoidance of school work. His headaches are always worse in the morning and as the day progresses they improve, so by the time evening rolls around, he is happily playing his games even though he still has a headache.

  • deestang
    5 months ago

    It is definitely possible that he has learned to live with the pain at a level 5. When you don’t see an end to the pain you find a way to cope. That is exactly how I am and I am 39. The distractions help you survive believe it or not. Worst feeling is when people around you don’t believe you. But you need some noise or just something to help you “live” and it seems like he is using the games to survive. He should take a break here and there to let his mind rest and maybe he can find other activities to occupy his mind but don’t doubt that he is in pain.

  • Joleen1966
    9 months ago

    I’ve had this for almost 40 years. I can’t remember the last time I didn’t have pain. The triptans and Botox didn’t work for me either. Depakote backed them down some but only for about 3 months. I’m now on amitryptline, propanolol, Cymbalta trying to find the right mix…. the only thing that backs them down enough for me to work is Vicoden ES. I take 1/2 a pill every 4 hours as needed. Sometimes I do need more than that but usually that will cut it back enough to work. I prayed that Botox would help but it didn’t do a thing for me.

    Thanks for sharing and letting me vent!

  • k_nelson
    9 months ago

    Yes. I always have a constant headache. Doctors think it is a little crazy. I think because I am 17, they think I am being a dramatic teenage girl. But it is true. If they don’t believe, they can try living like that.
    It has been probably at least a year or two since I have had a day without a headache. I have a constant 24/7 headache that fluctuates in intensity.
    For me, I have no solutions now, but I hope I will find one soon.
    Best luck to you and your migraine journey.
    KJ

  • snydez00 author
    9 months ago

    I know the feeling of not having peoolr believe you and not being able to do certain treatments being 17 myself. Hopefully you find something to help soon, best of luck

  • Selkie
    9 months ago

    I have status migranosus, im basically always in pain or feel tired and drained. I went on vacation recently, which i was really nervous about being sick while away. What if i got a migraine ect ect. However I spent about five days in the west coast of ireland and was almost headache free. I cant remember the last time i had felt so good. As we drove to dublin my headaches started to come back. And then when we got back home my headaches got even worse. I live in a major city and am now wondering if pollution levels are effecting me. It would be nice to find a trigger bc living like this, in pain all the time, its not really a great way to live.

  • snydez00 author
    9 months ago

    I feel it. I hope you find some sort of relief soon!

  • blancj8
    9 months ago

    I am just about at 100. Last time I remember not having one was the first week of June.
    I think mine was driven via UV light though. My office moved from 15 minutes from my house to about 40 minutes from my house. But I did learn that the safety glass in car side windows block between 55% and 80%. Not the 97%-100% of the front glass. So my next large purchase is going to be UV blocking tint on my car windows.

  • blancj8
    9 months ago

    I had a pair of FL41 glasses that had the almost rose tint. Problem was they were so low grade other then the tint, I couldnt stand to look through them, optically incorrect that they were.

  • snydez00 author
    9 months ago

    I got rose tinted glasses to help with my light issues, maybe they might help you.

  • Tamara
    9 months ago

    Join the club! 2 1/2 years of pain level 4 and up (5-7 most days now). It sucks balls …. just lost my job and house because of it. Constant low level migraine with 2-3 “flares” of severe pain each week – anywhere from a couple houes to days on end. Even urgent care visits are a “success” when they get me back down to a 5/10.

  • deestang
    5 months ago

    I feel your pain and I am sorry to hear that you lost your job and house. I also got a major migraine attack (with fainting) in july 2017 and was in and out of ERs and admitted 3 times and my employers did not care about me. They emailed me a termination notice in September so I’ve been home since. For some reason these migraines have been so tough to get rid of. I have had two rounds of Botox, I have become triptan resistant, tried propanolol, atenolol, Gabapentin, and many more. I am on Zonizamide and started DHE injections in myself just yesterday. I haven’t had a migraine free day in at least 3 months and it increases with activity. Mine is supposedly due to hormones. The pain has increased a lot the past 4 days and I am in status migrainosus. If anyone knows of anything “natural” that works…please let me know as I truly believe my body can not handle any more meds. I think it is rejecting everything.

  • oruxp1
    9 months ago

    I’ve lived with it for over 40 years.

  • moneypenni
    9 months ago

    Yes, my pain level never drops below a 5 and generally seems to “live” at about a 7. Botox, Zomig, Imitrex help dull the pain but it never goes away.

  • snydez00 author
    9 months ago

    do you mind if i ask how long you have had this condition/ been living with it?

  • snydez00 author
    9 months ago

    Zomig & imitrex both did not work for me. ( im triptain resistant) Had my 2nd round of botox today. Hoping i get some relief. .my pain rainge is similar to yours.

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