Desperate for Relief from Chronic Headaches

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.

Your answer

Nonamae

1y ago

What are coat hanger headaches ?

Wanderinglumos

1y ago

“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/

squigglybeanz

1y ago

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

1y ago

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

1y ago

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 👍

Ornith

1y ago

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

1y ago

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!

spoonkingg

1y ago

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

1y ago

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!

Alygator

1y ago

Possibly cervicogenic. I found that orthopractic PT helped a lot

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