New Daily Persistent Headache

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New Daily Persistent Headache
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    Post

    Pain and gastroparesis what works for this my 14 is suffering with Eds ,Pots ,gastroparesis NDPH it’s a nightmare so young

    #EhlersDanlosSyndrome

    Post

    Covid

    I just recently been through a heartbreaking break up, covid is getting worse where I am from and being 17 they can predict I won’t get it till 2021. I am severely immune compromised. I have already spent almost a year in quarantine, and now I can expect another year. In addition to this the are taking me off my medication to put me on a new one with a higher dose. I’m at a very low point and there is no end in sight. I realize that everyone else is going through the same thing but it’s so scary! I wish everyone love and help!! Thank you #Fibromyaliga #Pain #ChronicPain #Anxiety #Depression #Migraine #NewDailyPersistentHeadache #help

    Post

    I have an Instagram! #LivingWithPOTS #Dysautonomia #NDPH #Headache #chronicpai

    I have an Instagram if you are interested in more devices such as the "relief band." My username is @allinmyhead07. I hope the devices help! 😊

    Question

    Is NDPH really a thing?

    #Migraine . I was told that I have NDPH. “New Daily Persistent Headaches”.
    Really? It is 24/7 but really? And that’s at premier John’s Hopkins

    Question

    When dealing with a number of conditions/comorbidities, do you find one doctor or many? If the latter, how to get them all to communicate? Thoughts?

    I am the parent of a teen suffering from a number of conditions the initial of which was/is NDPH. I believe we're at a crossroad in her care and am thinking about how to proceed. Right now, we have a number of doctors - none that I'm thrilled about for various reasons and none are necessarily specialists in her specific disorder(s). Based on your experience, would you recommend seeing specialists for her individual conditions, going to an inpatient program to try to deal with all conditions holistically, or some other model?

    #DoctorShopping
    #ParentAdvocacy
    #Comorbidities
    #careplan

    Post

    It's been a time. I've been back at work for just over a month and have lost all stability due to hurdles that are no ones fault - just the world's circumstances.
    My pain has gotten worse with the arrival of summer. We've been stuck in a heat wave and the sun causes my skin to break out into rashes and hives and makes me increasingly exhausted.
    My medications are at war with themselves and it feels like every part of my body is decided now is the best time to attack.

    I am drained; physically and mentally.
    #ChronicPain #MentalHealth #Drained #NewDailyPersistentHeadache #BackPain #ADHD

    Post

    Ouch.

    I have what they call New Daily Persistent Headache. It means that one day, a headache showed up and never, ever went away again. I've also just had the biggest full blown panic attack I've had in years, and every time I think I've gotten it under control, the pain in my head kicks in, now also paired with lack of oxygen and crying, and it starts all over again.
    Tonight will be a treat!
    #ChronicPain #MentalHealth

    Question

    Have you had success with daith piercing for migraine / chronic headache #Migraine #NDPH #ChronicHeadaches #chronicmigraine #Daithpiercing

    I have frequent migraines & headaches & have a strong light sensitivity to fluorescent & LED lights which I wear colour-tinted glasses & a hat for which help a lot. I have had very little success with medications.

    I have heard the daith piercing helps some people but I have heard mixed reports. If you've tried it - does it work for you & would you recommend it?

    Question

    Do #KetamineTreatment work for #ChronicMigraines and #NewDailyPersistentHeadache

    I suffer everyday from #Migraine they vary on a pain scale of 7/8 sometimes worse. I’m doing everything under the sun, Botox, preventatives, vitamins, #Emgality , ER trips, injectable Toradol.
    I can’t take triptans. I’ve suffered for so long and they just keep getting worse. I fear what the future looks like and I’m only 41. I’ve heard so many things about #KetamineTreatment and am wondering about it and how neurologists feel about it? any helpful info would be appreciated, I’m out of options and have no life. thank you
    #Migraines #ChronicPain #ChronicMigraines

    Question

    How have you been working on your mindset & etc. while living with chronic illness/pain/fatigue?

    What have you found doing has helped your outlook on now and the future?
    I find that I limit myself with my thinking. Living w/ chronic pain and fatigue has made me expect less of myself and my future... which is only holding me back. It’s as if the logical part of my brain tells me it’s not realistic. I have found that self-talk, even when I feel like I am lying to myself, has improved my pain and mood greatly.
    I want to expect more of myself and my abilities... Not be so afraid to push myself to do things because of fear of pain or etc.
    I am sure it is a struggle for most of you.

    **Please only leave comments about what has helped... let’s focus on what has worked & inspire each other! ❤️**
    #ChronicPain #ChronicFatigue #ChronicIllness #MyalgicEncephalomyelitis #Fibromyalgia #Anxiety #Depression #PTSD #Dysautonomia #InappropriateSinusTachycardia #MyofascialPainSyndrome #Migraine #ChronicDailyHeadache #NewDailyPersistentHeadache #Pain #Fatigue #Spoonie