Seeking Recommendations for Vasodilators Effective in Treating ME/CFS

[kangaSue]

It’s great that you had proper autonomic testing. Was that in Brisbane? Forgive my nosiness, but the two autonomic specialists I’ve seen in Vic don’t even do tilt table testing.

No, I don't think you're not being nosey and yes, I had the autonomic work up done in Brisbane (RBWH Neurology Dept).
I can give you some names of doctors in Melbourne that other patients down there have recommended for POTS, autonomic dysfunction and/or EDS if that's of any help to you.

So from that we assumed autoimmune, especially as I have two other autoimmune conditions.

My turn to be inquisitive in return though, can I ask what autoimmune conditions you have? I had the autonomic function work up done as part of ruling out possible autoimmune involvement in having chronic GI dysfunction (gastroparesis) when Sjogren's or Scleroderma was looking to be the issue - before Nutcracker Syndrome was on my radar.

 

[kangaSue]

For a long time I know I didn't, and it's horrible because the heat builds up inside of you.

Yes, exactly that and I felt like I was cooking from the inside out. I was prescribed pyridostigmine for it which did help to improve my sweat response but as it did nothing for my GI symptoms as hoped for (this med is sometimes highly beneficial in gastroparesis)< I gave up on it.
I have since found that taurine works just as well as pyridostigmine for me though, and it also helps toa mild degree with gastroparesis symptoms.

 

[kushami]

@kangaSue , my two confirmed auto-immune conditions are ulcerative colitis and lichen sclerosus*, although I should say that researchers still haven’t proved that these are in fact auto-immune conditions, it’s just strongly suspected.

I also suspect that my mum had Sjogren’s syndrome, but so far I am not showing any signs of it.

So all I’ve had in terms of rheumatology testing is a negative ANA, really. Luckily I found a rheumatologist willing to try me on low-risk treatments for OCHOS, which are hydroxychloroquine (Plaquenil) and low-dose naltrexone (LDN). He is going to write to the professor in the US who described OCHOS and ask him if there’s anything else to try too.

I haven’t been through the public hospital system for my OI/autonomic symptoms, which I somewhat regret in terms of testing, but c’est la vie. The testing I need now is transcranial Doppler ultrasound, which I am supposed to be having soon.

My specialist has taken six months to even order it, and now several more are passing while it gets scheduled. So frustrating!

But on the plus side – if it happens, regardless of the outcome for me, anyone who can get to Melbourne will be able to have this test ordered for cerebral blood flow by a specialist. (I will be putting the details in another thread I started when I am sure it is available to all.)

Unfortunetely the HCQ and LDN are on hold lest they interfere with the test, so I still don’t know whether they are going to do anything.

*Lichen schlerosus affects the genitals so to anyone reading who doesn’t know about it already: be careful of searching it as medical images of affected body parts will pop up in your search results.

 

[keenly]

Sunlight! Nothing is better.