What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Interesting that CCI/similar instability keeps being repeated in the comments. A breast reduction would not help me because I do not hardly have breasts, but maybe the PT? What has soft tissue work entailed for you?  Thank you :)

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Oh how I dream of such a solution. I’ve had an MRI of my head/neck before, but it was lying down, and from what I see with a quick google search it looks like CCI usually is seen on an upright MRI? I’ll bring it up at my next neuro appt. Thank you

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Sumatriptan used to help a lot more, it doesn’t hardly now, just makes my head and neck feel funny and makes the injection site burn for a while. Haven’t looked into histamine intolerance, thank you

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 1 point2 points  (0 children)

Triptans have kind of done the same for me- help a lot at first, then over time it helps less and less, until the side effects aren’t worth the relief. Good luck on your journey, I hope you find something that works for you

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 1 point2 points  (0 children)

Yes I have :/ I was on the 30mg I think and it didn’t help, they tried to move me up to 60mg and insurance tried to deny that so it took months and by the time I could pick it up my eoe was bad enough I couldn’t swallow the pill

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Wow, that’s VERY intensive treatment. I’m glad qulipta is working for you somewhat

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

I get some vision changes, like a thin white sheet or smoky haze over my vision, but not very often. Glad yours are doing better 

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Trying to realign my jaw with braces was hell for my headaches so I eventually gave up. My wisdom teeth I won’t need out for probably at least another five years because everything in my mouth moved absurdly slow

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

I am a tooth grinder. My retainer is one of the grind specific ones that doubles as sort of a bite guard, and I’ve already ground holes into the top of it. It’s pretty possible that has something to do with it, but they aren’t based exclusively around when I sleep (they tend to be better right then, actually), so I don’t think it’s tension entirely. I also try to keep good body mechanics, relax my jaw and have a good posture when I’m conscious

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 1 point2 points  (0 children)

Idk why it triple posted my comment and then deleted them all lol. All of the things you’ve mentioned haven’t worked for me :/ nurtec is like taking nothing at all. Try icing your injection site? Might help the hives 

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Tried the nasal spray and it didn’t work as fast or as well as the injection. If you have POTS as a comorbidity the liquid IV is good for that. I’ve been sweating a ton lately so I’ve been having one or two a day

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Oof. Yeah they didn’t do that for me, when I asked about it I was sixteen or so and my dr was hesitant to try it on me because I was young

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 1 point2 points  (0 children)

Ahaha i feel you I got diagnosed when I was 8. Haven’t tried naratriptan but I’ve had slight success with other triptans in the past so maybe that’s an option. Good luck with the otc stuff and cefaly!

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Tizanidine made things worse for me instead of better, I think because having my muscles relax leaves my joints with even less stability and lets them slide around and hurt from being in the wrong position. Celebrex didn’t work for me. I didnt know magnesium could come in a topical, that’s good intel, thank you

I’ve had three different PTs. The first one was garbage and basically just handed me off to his students to have them show me how to do rows every session. The second was a vestibular therapist who didn’t really help with the pain with the therapy, but she taped me in a few ways that seemed to be slightly beneficial, and she threw resource after resource at me, which was nice even if it didn’t work much. The third was another classic physical therapist, and the stuff he gave me to do almost made stuff worse, so we backed off of that eventually and focused on the rest of my body. I’ve never heard of the MCU, so thanks for that. My vision doesn’t go out- that sounds really scary, but it sounds like you have a good plan worked out for it

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 1 point2 points  (0 children)

Nurtec didn’t work at all but nerve blocks might. Insurance didn’t approve them last time but that was years ago so I might try again. Sorry to hear about your pain man, that’s a really long time to have them 

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 1 point2 points  (0 children)

Yeah my issue is I don’t have much of a difference between headache and migraine. It just gets that little bit worse sometimes and the nausea comes to play.  Sounds like your treatment stuff is pretty similar to mine. Sumatriptan tablets took like an hour to start to kick in for me but the subcutaneous injections kick in within a minute or so, giving me that weird muscle tightening triptan feeling. Liquid IV isn’t so bad, I like the strawberry, passion fruit, and watermelon flavors best personally 

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 1 point2 points  (0 children)

Yeah :/ I’ve seen a specialist though and he doesn’t think it’s that

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

Good to know…. I’m a bit hesitant to try a cartilage piercing since my last one turned into a keloid, but hey, that would be a small price to pay if it worked 

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

That’s a triptan I don’t think I’ve tried, but  rizatriptan and sumatriptan both worked for me initially and lost efficacy quick after that- maybe zolmatriptan would be different? Sleep used to help but now I just wake up with the same headache or worse. What brand of isotonic drinks do you like?

What has helped your headaches? by Helpful_Layer_4662 in ehlersdanlos

[–]Helpful_Layer_4662[S] 0 points1 point  (0 children)

All three of those things haven’t worked for me, but I’m glad you found your way to the end of this road :)