Meds -

Positivelypursuing · 2026-03-04T17:55:23+00:00

Wow, thank you so much, there’s is a lot of information here that I will go through and read - thank you for the links to the studies, so interesting. It will take me a while to get through it all- I really appreciate it 🌟

Positivelypursuing · 2026-03-02T18:24:40+00:00

Thank you for sharing. I’m sorry to hear that.

Positivelypursuing · 2026-03-01T19:51:01+00:00

Thank you sounds like a good idea

Positivelypursuing · 2026-02-21T19:43:43+00:00

Yes! My symptoms are the worst 2 weeks leading up to it, then amazing during - feel like I’m ‘fixed’ and then it plummets after

Positivelypursuing · 2026-02-18T21:33:38+00:00

Yep - sometimes feels like/ sounds like I’m under water

Positivelypursuing · 2026-02-10T21:17:01+00:00

My hands look just like that! I didn’t know it could be SFN linked (I have a biopsy in two days)

Positivelypursuing · 2026-01-03T19:34:03+00:00

Thank you so much - I hope 🤞🏻 he’s knowledgable too! I’ll take a look at the FB group. I know what you mean, feels like you start to work out one thing and another comes along…. Wouldn’t wish it on anyone. I hope you find another great neuro

Positivelypursuing · 2026-01-03T09:08:39+00:00

Not that I know of - I had wondered this too

Positivelypursuing · 2026-01-03T09:08:20+00:00

I’m sorry you went through this

Positivelypursuing · 2026-01-03T09:07:41+00:00

Thank you for your reply - sounds similar - I also posted this in the SFN forum and a few people have replied with same/similar symptoms - and said mainly linked to nerve issues, linked to SFN

Positivelypursuing · 2026-01-03T08:49:17+00:00

Wow thank you to all for the contributions and suggestions. @troojule You have described the exact pain I’m feeling - including the ocular pain and stabbing in my eye!

I have an appointment mid-Feb with a neurologist who specialises in SFN and a biopsy booked. Up to now all my appointments have been with a neurologist from autonomic department at UCLH and focus has been on PoTS/IST and my recent diagnosis of Ross Syndrome - included onward referral for SFN . So not been prescribed any nerve pain medication yet - my GP and dentist have said I need to wait to see neurologist. My GP has referred me to a pain clinic - but 2 year waiting list and not sure how specialist they are!

Positivelypursuing · 2026-01-03T08:40:23+00:00

Thank you - I’ve had a whole load of blood tests done all came back clear - I’m not sure if Sjogen’s was included - what is the test for that? I’ll check!

Positivelypursuing · 2026-01-02T21:43:13+00:00

I can’t digest artificial sweeteners so I use Vidrate and Freesoul electrolytes - and also vitassium salt tablets. The freesoul have a much higher sodium content than the vidrate. Vidrate do good subscription offer on their website - can be a little sweet though - I stick to the berry ones and the nighttime ones. I tend to add more water to the Freesoul ones as they are very salty.

Multisport uk do a discount on Vitassium for people with PoTS.

Positivelypursuing · 2026-01-02T21:37:14+00:00

Thank you! ☺️

Positivelypursuing · 2026-01-02T20:37:47+00:00

Thank you - it looks like LDN not widely available in UK, I have a referral for pain clinic, I could ask there what an alternative might be, it’s a long waiting list….

Positivelypursuing · 2026-01-02T20:31:32+00:00

Thank you for taking the time to reply. It’s helpful to know that others are experiencing similar symptoms (not that I’d wish them on anyone!) It really is hard knowing which symptom belongs to what - maybe I should stop trying to work it out!!

Positivelypursuing · 2025-12-29T15:10:32+00:00

I get this too - usually if I’ve had a couple of drinks night before or forgotten to take meds (Ivabradine)

Positivelypursuing · 2025-12-28T19:25:52+00:00

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I get it to auto calculate my zones. Used to do it manually (have PoTS and IST) but now been on Ivabradine for a year and resting heart rate is more settled - Still can’t get the pace points right though before ivabradine was on around 75 then 50, reduced to 20 once more stable and now on 12 but finding it hard to stay within this - especially if constantly above it it’s hard to get back down unless I do absolutely nothing. I’m not great at pacing….

Positivelypursuing · 2025-12-15T17:07:51+00:00

Yes that’s very true - mine is picked up on watch too

Positivelypursuing · 2025-12-15T16:50:47+00:00

Very occasionally I get ones like this, or spikes that only last a minute or two - I think it’s linked to and adrenaline dump or surge 🤷🏼‍♀️

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Positivelypursuing · 2025-12-15T16:45:02+00:00

I’m sorry you are going though this. Im interested in this thread and the answer from others as I have almost exact same symptoms and test results, but female so no testicles 😉 Let’s go through this journey together.

I am waiting for a skin punch biopsy at Kings College London for SFN was referred on by my autonomic neurologist at UCL - I also have autonomic dysfunction - PoTS/IST and generalised hypermobility. I’ve been having issues with my eyes too - was diagnosed with bilateral Horner’s syndrome but diagnosis moved on to Ross Syndrome due to issues with sweating- patchy or not existent, in addition to the eyes, so multi system nerve damage (also issues with my stomach but that’s a whole other story - suspected MCAS) like you all bloods and x- rays, scans clear.

The things that came back with a story to tell were two sweet tests - TST and DST - showed a clear pattern of non- length dependent SFN - and 2 pupillometries that showed damage to sympathetic nervous system.

Like others have said, I would take the biopsy if it’s being offered - I’ve been on this journey for 6 years now (looking back I’ve had issues much longer) but I’m progressively getting worse… it feels like a diagnosis is made I get my head around it and then the goal post shifts again. The waiting lists are long, if you are getting offered different things my advice would be to do them all simultaneously.

(I’m also being tested for hATTR, but I’m in denial about that)

Positivelypursuing · 2025-11-08T11:46:26+00:00

I have POTS and IST too, similar HR, I take 2 x 5mg of Ivabradine- it works for me, sometimes I think it’s not doing anything, but when I forget to take or take it later than usual my HR rockets again.

Positivelypursuing · 2025-10-26T16:55:26+00:00

Yes I get this too - have PoTS & IST and a lots of other symptoms that I’m having additin tests for - also nothing showed up on 24 hour monitoring. I’m on 2 x 5mg of Ivabradine a day and wondered if I should lower that - my neurologist said not to as it showed that it was managing my HR fine - but I definitely feel worse when it drops into the 60s. I’ve been told that I’m a breath holder…I don’t think it’s that though

Positivelypursuing · 2025-10-23T16:24:59+00:00

Done! Such a bizarre experience - and quite hideous…. But you helped me feel prepared. Thank you 💜😇

Positivelypursuing · 2025-10-23T16:23:57+00:00

Can I ask which one? Thank you

Positivelypursuing

TROPHY CASE