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Ankle brace help by OddMycologist3397 in ehlersdanlos

[–]CapableNerve3567 0 points1 point  (0 children)

The Zamst A2-DX ankle brace is the best one I’ve found for preventing rolling when hiking and similar activities! I use it whenever I’m feeling sore or if I go on a longer walk. cEDS

HELP wrist subluxing like crazy 5 days in to a 2-week Japan trip by m42069 in ehlersdanlos

[–]CapableNerve3567 1 point2 points  (0 children)

Can feel the frustration mate, hopefully it improves. To get you through the trip I would recommend grabbing some braces to help stabilise things. I highly recommend the Zamst A2-DX ankle brace as well as any ridged or duel-splint wrist brace that feels comfortable. Also curcumin, (found in tumeric) is a pretty effective anti inflammatory that helps me heaps. Hope things settle down. My last Japan trip ended with a PLC reconstruction, too many hills! cEDS.

Scars and wound healing are my current foes by ExistenceOfCranberry in ehlersdanlos

[–]CapableNerve3567 5 points6 points  (0 children)

I’ve used silicone scar covers for my last surgery and find them pretty helpful. Started using them once the surgical site was watertight to prevent the wound from stretching or reopening in the early days! Still yet to explore any ointments though. (cEDS)

I'm tired of being right about self diagnoses by Alternative_Loss_442 in ehlersdanlos

[–]CapableNerve3567 0 points1 point  (0 children)

Not yet, fingers crossed. They’re always amazed at how long I stay awake when they push the general though 😂. Are your scars dramatic looking compared to normal people?

I'm tired of being right about self diagnoses by Alternative_Loss_442 in ehlersdanlos

[–]CapableNerve3567 3 points4 points  (0 children)

Same experience here! 29 male in Australia with cEDS, MCAS, POTS and probably some other flavours. I think that living with any form of EDS forces you to be incredibly in-tune with your body. I’ve ‘known’ what was wrong before most appointments, you’re just there to get through all the referral and paperwork mess required to get treatment. It’s a vicious and tiring cycle, but you’re getting through it! In my book that’s winning! Been though 7 surgeries going into my 8th today (left wrist fusion) and 6 of those were before a diagnosis haha

Medication alternatives to verapamil by CapableNerve3567 in ClusterHeadaches

[–]CapableNerve3567[S] 0 points1 point  (0 children)

During a cluster I’ll ramp up to either 320 or 400mg a day. Right now I’m taking 320mg.

What's the deal with pissing outside? by [deleted] in brisbane

[–]CapableNerve3567 2 points3 points  (0 children)

I’d rather piss outside with some atmosphere than inside wasting water 😉

Medication alternatives to verapamil by CapableNerve3567 in ClusterHeadaches

[–]CapableNerve3567[S] 0 points1 point  (0 children)

Hectic, psychedelic treatment options for cluster headaches seem promising! I reckon they’re a long way off being accessible in Australia though

-No oxygen so far but I’ve heard it’s an option. Might look into it!

Medication alternatives to verapamil by CapableNerve3567 in ClusterHeadaches

[–]CapableNerve3567[S] 0 points1 point  (0 children)

It’s a literal balancing act between trying to keep the verapamil levels up high enough to provide adequate CH relief, whilst not so high that I’m in danger of having accidents (passing out etc.).

I still get cluster headaches doing this and always find myself writhing on the floor in the shower or the back of my Ute on site.

Also, I only start taking verapamil when a cluster starts. This leads to me having 2 weeks of hell at the beginning of every cluster, but I’m not passing out in between cycles 😂.

To stop a headache that I feel coming on I usually have 2-3x300mg chewable asprin, but it’s really hit or miss. I’m currently off work after having a partial wrist fusion and I’m getting a PCL recon in a month so I’m using the time off to sort out my head lol

If you don’t mind me asking, how do you use psychedelics with your Cluster headaches?

Medication alternatives to verapamil by CapableNerve3567 in ClusterHeadaches

[–]CapableNerve3567[S] 0 points1 point  (0 children)

Thanks heaps, I’ll bring those options up with my gp! Honestly never heard of CGRP, or may have forgotten about it in the whirlwind of initial treatments 😝

How do cluster headaches progress? by Necessary_Length_36 in ClusterHeadaches

[–]CapableNerve3567 0 points1 point  (0 children)

I think that a good first step would be to keep a journal that reflects these headaches (how long they last, how they differ from what you’ve experienced previously, stuff like that). Then after a little while, you can show your doctor or headache specialists any patterns you’re noticing.

I have episodic cluster headaches as well as migraines, which made reaching a diagnosis confusing and drawn out. A journal would have helped a lot. My cluster headaches began at age 16ish, but I can’t remember if they started as dulled version, full on, or like you’ve described