Wanderinglumos

180d

Hi. I haven’t been diagnosed with hEDS (I have to wait a year for an appointment next summer) but I have pots and it’s suspected EDS (I pass the criteria). I have been getting these migraines at the top of my neck/base of my skull for years but recently I just haven’t been able to find relief anymore. Does anyone else get these headaches and have some suggestions. Idk if it pots or eds or what but I notice them on days I’m a bit more active (only was out to get groceries today and have one bad now). I’m desperate for any relief and I can’t figure it out.

Ibuprofen

Ehlers-Danlos Syndrome (EDS)

Migraine

View all
  • Alygator

    180d

    Possibly cervicogenic. I found that orthopractic PT helped a lot

  • spoonkingg

    180d

    Hi! My doctors believe I have POTS and hEDS too. I have chronic migraines as well — often in the back of my head like you’re describing. Unfortunately, I have no idea what the cause is and I’ve been wondering myself for years. The good news is that my doctor recommended what we call a “cocktail” sort of concoction for when I need to knock out a migraine — I take ibuprofen, benadryl, and drink a can of soda or have some coffee or an energy drink, for caffeine. It has worked wonders for me, especially when I add an ice pack to my head. Sorry for being so wordy but I hope this helps you some! 😂

    • Wanderinglumos

      180d

      thank you for sharing! I typically take some Tylenol, drink a drink high in electrolytes and sodium for pots, and lay down. Unfortunately my pots symptoms don’t typically allow me to have caffeine anymore but it may be worth a shot to try it and see if it helps the pain meds since I would be laying down anyway. Appreciate the suggestion!

      • spoonkingg

        180d

        Ah, yeah, I didn’t think of that! Caffeine actually doesn’t affect me much, thankfully; sorry. Good luck!

  • Ornith

    180d

    I get these all the time. This is what my PT recommends. I'm getting one soon. I'll let you know if it works. CranioCradle Sport DT (Deep Tissue) - Quality Neck, Back, Shoulder for Deep Tissue Massage, Myofascial Release & Physical Therapy - Lower & Upper Back Pain Relief https://a.co/d/imi2JG1

    • Wanderinglumos

      180d

      that honestly looks like it could feel great to have during on of these migraines. Thanks for sharing! I hope to hear it offers some relief for you!

  • Nonamae

    180d

    I just found out mine are from cranial instability. Pt and my dr recommended an inflatable neck brace to use for 15 minutes 2 times a day.

    • Wanderinglumos

      180d

      I had come across that term while trying to look into what this pain could be from. Something like that looks like it could help with the pressure. Thanks for sharing 👍

  • squigglybeanz

    180d

    POTS can cause “coat hanger headaches.” I get them from time to time. Maybe that’s what it is? EDS and cranial instability often go hand-in-hand as well, from what I’ve heard? Hoping you find relief soon ❤️

  • Nonamae

    180d

    What are coat hanger headaches ?

    • Wanderinglumos

      180d

      “In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down.” It’s common in POTS patients. Source: https://thedysautonomiaproject.org/coat-hanger-phenomenon-and-the-pretzel-leg-sign/

      • Nonamae

        180d

        yes I never knew that’s what it was called

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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