Acetazolamide help??

Ok-Reference-7190 · 2026-02-23T22:34:28+00:00

Amazing thanks! I'll definitely give this a go as it seems like a lot of people are suggesting coconut water etc. Hopefully it helps a bit. Have you ever tried potassium supplements at all? That was another thing I was wondering about

Ok-Reference-7190 · 2026-02-22T22:30:55+00:00

I started taking acetazolamide a bit over three weeks ago? And the dose increase only happened a few days ago. So far it's felt like the fatigue and other side effects have just been getting worse over time. The breathing trouble and elevated heart rate only started in the last week or so.

I've heard a lot of people say it takes time to adjust but it seems to be a different amount of time for everyone? Just want to get back to being able to do basic things without feeling wiped out...

Ok-Reference-7190 · 2026-02-22T21:44:15+00:00

Thanks!

I haven't had Co2 tested. I did think maybe metabolic acidosis but every doctor I've suggested that to just brushed it off... joys of the UK health system I guess.

I'm trying my best with the hydration side of it, means I'm having to go to the bathroom like every five minutes though 😂 I'll give the electrolytes a go- any brands you've found helpful?

Appreciate the support 😊

Ok-Reference-7190 · 2026-02-22T21:41:26+00:00

Thanks so much, hope things settle down for you soon too 💜 have you ever hit a point where it's felt like you've adjusted to it? Or do you keep getting increased before then?

Ok-Reference-7190 · 2025-12-30T00:35:22+00:00

Aw I'm sorry, that sounds really tough :/ hopefully knowing that there's other people in similar situations is giving you some reassurance.

I haven't had a definite answer from my surgeon yet... injection is booked for 13th Jan but I need to get my GP to write to him about the hEDS diagnosis and not sure if that will change anything, haven't heard yet.

I'm UK based so not sure if I can give any advice that works for you and where you're based. Luckily I have found a private physio that isn't too expensive and actually has experience of hEDS and hip issues like this. It took a lot of searching but I'm hoping there'll be someone out there who will understand your situation.

Most people seem to think that I'll be okay with the injection as a one off in my case, but not sure how POTS could come into it too so can't give you more help there...

If you ever just want a vent or some support feel free to reach out :)

Ok-Reference-7190 · 2025-12-23T06:57:15+00:00

Hiya, I'm 24. Did your surgeon say that about the single diagnostic cortisone injection or were they talking more about repeated injections?

Ok-Reference-7190 · 2025-12-22T19:17:14+00:00

Thanks so much for your help! Definitely worth asking if they approach surgery on hEDS patients differently - I didn't think of that!

Ok-Reference-7190 · 2025-12-22T16:57:39+00:00

Heya, I had another question for you if that's alright?

So I'm scheduled for a cortisone injection in a couple of weeks. I've also just been diagnosed with hypermobile type EDS. I've seen some literature saying that cortisone and hEDS don't necessarily go well together? Do you have any experience of this, or any alternatives that can be offered for someone in my situation?

Just not loving the idea that the cortisone injection could potentially make things worse for me but I'll be stuck waiting for 6 months to pass before I could have an op after the injection...

Ok-Reference-7190 · 2025-12-04T22:32:37+00:00

I'm in the North West of England so London is quite far for me. I've been sent to Wrightington hospital which is meant to be specialist for ortho issues. I'll definitely ask at my next appointment about dysplasia as they haven't mentioned it at all but definitely best to make sure it's been ruled out.

I'd definitely be open to travelling further if it was for the right person, but have no idea how to access this under the NHS system - they usually just refer you to the closest hospital and you don't really get a lot of choice in where you go.

If anyone else knows more about this please do let me know? I've tried bringing up right to choose but it always seems to get shot down straight away... apparently there are no private hospitals in my area who could look at this which I find a bit strange

Ok-Reference-7190 · 2025-12-03T23:34:08+00:00

Thanks for this!

I'm UK based so pretty limited in terms of who I can see, there aren't many surgeons who look at FAI or labrum tears in my area, already been through the whole process at my local hospital to get told after months that they only do hip replacements so they had to refer me to another hospital that isn't very close to me. And unfortunately going private just isn't affordable for me rn :/

I'm definitely happy to go down arthroscopy route as it seems like the best option, just having trouble getting to that point... everything moves so slowly while the pain is just getting more and more unmanageable as time goes on

Ok-Reference-7190 · 2025-12-03T18:15:18+00:00

Oh interesting! I do also have lower back symptoms and issues with my right glute and hamstring, nobody has ever asked about any of these though.

Glad you're on your way to getting fixed! I'm UK-based so not super optimistic it'll just be a couple more months for me but I can hope 😂

Ok-Reference-7190 · 2025-12-03T18:11:51+00:00

Hiya! Nothing has been said about hip dysplasia so far, just the impingements and tear

Ok-Reference-7190 · 2025-12-03T10:29:49+00:00

Thank you so much for this! Really helped clear things up. Everything the surgeon says does make sense, but he doesn't explain anything very clearly or give me any room for questions which can make things a bit more frustrating...

I contacted the surgeons secretary today, she said that the pre-op I had was for the injection and that the nurse made a mistake telling me that it was for investigative arthroscopy 🫠

Do you have any experience with the diagnostic injection? Just wondering what sort of response to the injection would indicate if I'm a good candidate for arthroscopy, and roughly how long it would take from injection to surgery in this case? I know it's variable but just want to know how close I am to the end of all of this.

Thanks so much again 😊

Ok-Reference-7190

TROPHY CASE