UKC

Not quite sure which thread this falls under as a probably a bit niche but - has anyone with POTS or similar conditions managed to get back into climbing? Perhaps any Long Coviders? 

(Postural orthostatic tachycardia syndrome, before anyone makes smart remarks about cooking equipment.)

Have possible POTS along with post concussion syndrome since a freak head injury at the end of last year (got attacked by my own car..). Doing the POTS specific exercise rehab to try to verrry gradually get back my general fitness and ability to walk distances etc, but at some point I'd love to eventually get back to leading and (very incipient) mountaineering. 

Problem is at the moment I haven't even been able to second mates because a) POTS means I can't stand for very long. I can manage TR belaying a mate running up something, but lead belaying feels less comfortable, and who wants to climb with someone who can't belay? and b) tbh I don't think my climbing mates really have any understanding of how much I'm affected and that TRing a Diff is a big struggle right now.

I've drawn a blank with adult communities for disabled current climbers - I'm aware of the Paraclimbing Collective but not in Sheffield, sadly. Unfortunately chronic fatigue means travelling further afield isn't really feasible.

I'm occasionally doing a little indoor bouldering to get back used to the movement (vertigo, sensory overwhelm and sheer fear of a repeat concussion have also been issues) but it would be lovely to hear if there's anyone else who's gone through this and eventually got back to climbing. 

Thanks.

I was going to quip about plain old telephone system...

Try getting in touch with Climbing For All https://climbingforallsheffield.com/

Not all disabilities are visible and it's a really friendly supportive environment with all abilities of climber.

Hi, I think we've crossed paths on here before on a similar topic... I developed pots suddenly in 2018 and have been gradually clawing back some life after a few years of being largely housebound (not quite sure why I have continued to tease myself by visiting this forum all these years... )

I have recently improved to the point where leading a diff is conceivable, I just need a few things to align like: short drive, short approach, somewhere to lie down to rest, feeling good on the day, a day to rest afterwards etc.! Was hoping to climb Alison Rib this summer but I had a cold on the holiday!!

It sounds like you're well versed in pots tactics, but just in case it helps you or someone else:

• Compression leggings and abdominal binder (abdominal is most important for me)
• Lots of additional salt (about 10g plus salty food for me, put it in my water)
• Fludrocortisone, midodrine, ivabradine have all helped immensely, they gave me by far the most improvement. Pyridostigmine helps some but not me.
• Exercise is great if your body can tolerate it, mine cannot but I think that might be changing now I've been on ivabradine for 5 months. Horizontal leg and abdomen strengthening, and swimming/recumbent bike.

I suffer with chronic fatigue as well, and the pots drugs have really helped with that. 

I hope some of that is useful, I'm more than happy to discuss more here or privately via pm 

P.S.

I had really bad morning headaches so I had a sleep study done and was really surprised to be diagnosed with sleep apnea. There isn't an established link with pots but there is an anecdote on the pots UK website of someone who treated their apnea and recovered from pots. Just got my CPAP machine and am hoping for more improvement. Thought I'd mention in case it helps anyone, it's very under diagnosed I think

Thank you for that very full reply! Yes, I am similarly torturing myself with this... Was just walking back home thinking about hand jams. Ergs have absolutely none of the romance of the views across the moors...

I'm on the CHOP exercise programme (ISH... I haven't accepted not going for short walks as well; that seems a very well reasoned but American approach to life) but PEM is definitely alive and kicking so fatigue makes it a bit harder. Hard to tell what is PEM from exercise and what's work ofc. I'm doing the other stuff except can't tolerate any meds alas and I've not tried abdominal compression - might look into that (though perhaps not after pasta...). It's a good shout though that I've not tried compression in a climbing environment yet (thrutchs in a former life aside, ofc). So far the ability to walk seems to be gently improving (apart from when I really crash) but not so much the ability to stand still. 

And thanks Jenny for the suggestion of CfA - I've volunteered with them a few times in the past and they are definitely a great organisation. I'd feel a bit weird (and old!) going there as a client, so to speak, but an adult community of people in similar positions would be lovely to find. 

Thanks all. Leading easy Diff multis (and maybe some alpine/winter if I'm getting greedy...) is basically a dream on which I could die happy. 

Oh and that sleep apnea bit is interesting! I wonder if the same... A private study? Anyway happy to discuss privately if preferred. Thanks for your help.

Come along to C4A as a volunteer, safety rope belay and then someone will be happy to give you a belay back

No such thing as too old.

I don't seem to be able to pm you? I think your settings don't accept it.

Agreed about the walks, I have continued short walks most days if possible.

Abdominal compression, I use a post surgery/pregnancy velcro binder, lots available online. I use it when sitting or standing (not lying down as it gives headaches, and not during or immediately after meals as it gives indigestion!).

Meds, really sorry you can't tolerate them. You probably know this or tried it but some people have success building them up from a very very low dose over a long period, like cutting the pills into quarters etc. Also if you don't tolerate them due to allergic reactions you've probably looked into mast cell activation? That's somewhat controllable with antihistamines I believe. And finally there are some natural alternatives to some of the meds: liquorice for fludrocortisone, huperzine a for pyridostigmine, butchers broom for midodrine. I've not tried any of those. I did read a case report of a woman who had undiagnosed orthostatic hypotension and had instinctively added huge quantities of liquorice tea and soy sauce to her diet, controlling things for many years!

Apnea, I had a study done privately, but I think if you had morning headaches, nighttime urination, daytime sleepiness or other sleep apnea symptoms your GP should arrange a test for you. I was able to enter the local NHS sleep service off the back of my private study, think that might be somewhat dependent on how your local GP and sleep clinic operates.

​​​Ergs << views !

I hope the following link is of use to you.

Lorna is a long time friend of mine. She did suffer from PoTS for a long time. Founded the charity PoTS UK. Now climbing, Mountain biking, Munro bagging, Pilates teacher, Ethel bagging and occasionally stops for a cup of Earl Grey.

Lorna comes from a medical background so not only had PoTS but understands the connections between the body and mind. Sheffield based by the way.

https://lornanpilates.co.uk/

https://www.potsuk.org/

Physical and mental health is so important to quality of life. Onwards and upwards.

Oh thank you, the POTS UK website is fab! 

You're welcome. Not many people have heard of PoTS never mind the debilitating effect it can have on people's lives.

Lorna's pilates website does have a tab relating to PoTS.

https://lornanpilates.co.uk/pots-long-covid-rehab

Years ago I had a femoral nerve impingement and could not physically stand up. I spent weeks in hospital and 5 months off work followed by slow recuperation.

I again would emphasise the importance of good all round support mechanisms not just the physical recovery. My physical activities were my release from a very demanding stressful job. The inability to exercise affected my mental health.

There are some wonderful people out there. Support is available. The journey to recovery could be a long and slow one. You might feel lost and dispirited. Sometimes you may want to travel alone on that journey but sometimes it can be a real help knowing that you are not alone and someone is willing to be alongside you.

Yes definitely. Thanks for the thoughtful words. This is just part of post concussion syndrome for me, which I wouldn't wish on anyone (never realised that a freak, and relatively unserious, concussion - I drove home the next day! - could result in such wide ranging and lasting disabilities). So I am well versed in the wider ripples unfortunately!