POTs/ dysautonomia/ autonomic nervous system issues anyone??

[Melba1]

Hello, looking for your experiences please and my release from hospital may depend on it!!

I have been struggling with various lupus symptoms recently, had second rituximab last week and lots of palpitations/ dizziness. I was in my GPs last week standing in the queue (standing always makes me much dizzier/ lightheaded than walking) and blacked out. The GP said I was unconscious (then clammy, floppy and vague!) and she couldn’t get my oxygen levels up even with oxygen so called an ambulance and admitted.

My consultant thinks it’s a brain lupus attack but the main test I’ve failed (and every part of me is being tested before release!) is the heart rate one where they take it lying down then make you stand for minutes then take again. Mine went up to 150 and I felt feint and then had to vomit/ feel very tired for a while. I’ve also had difficulty controlling my temperature - ranges from 35.5-39 and feel more like a reptile where I have to use external measures to warm up/ cool down as my body doesn’t do it automatically, lots of pins and needle too.

Does anyone have this/ similar and their rheumy/ neuro has said its autonomic? I looked it up and my rheumy said it’s possible but rare and more likely a bad reaction to the rituximab or I’m still in a NPSLE flare.

He’s not letting me go until he’s happy with me but every time I stand for a few minutes it all goes black 😬 and my heart rate goes ridiculously high.

Any ideas please??

Thank you!

[whisperit]

Nasty! I had a spell where I was unable to stand up for more than a couple of minutes before feeling faint, and became tachycardic. I did the "standing test" at home, which suggested I might have POTS. While I waited for a referral for the "tilt table", I was started on a low dose of beta blockers. The tt showed a significant drop in BP but for not quite enough to qualify for the diagnosis.

Around the same time, I developed severe phlebitis in both legs - caused by blood pooling. It was so bad that the GP rang an ambulance to admit me to hospital on the spot.

The good news is that, although I have remained on B blockers, I have regained my ability to stand and walk without those problems. I wonder if both the underlying condition and/or the treatments we take can cause our autonomic systems - like BP control etc - to go wonky for a time, but that they can recalibrate and adjust, at least sometimes.

Really hope you recover soon x

[whisperit]

It won't help the underlying issue, but there are techniques to reduce postural hypotension a bit when you sit up:

- drink a glass of water 15 minutes before you sit up

- wiggle your feet and clench and relax your leg/calf muscles for 5 minutes before sitting up (this helps tone up the 'calf pump' so blood pooling happens more slowly) Keep clenching and relaxing your calves while you are upright

x

[Melba1 in reply to whisperit]

Yes I thought about you (and twitchy) when I wrote this as sure some of your problems are similar.

I think I get this when I get a brain lupus flare which makes sense as it’s just another part of the nervous system I suppose.

Did beta blockers help? I’m keen to try them but if mine is just an adverse drug reaction may wait and see.

Thanks for that advice, that’s really helpful 🙂 I was told to drink a lot for my low blood pressure/ thick blood combo and it works when I can be bothered - more salt too apparently?

I will try wiggling my toes/ calves. I was doing it on standing but hadn’t thought to do it before - thank you! My rheumy may let me up if he knows I have some techniques. He didn’t like my large bruise/ carpet burned forehead from faceplanting at the GPs!

X

[whisperit in reply to Melba1]

I think the evidence for B blockers is equivocal - in some studies it works, in others it doesn't. I'm not sure whether it was the B blockers that helped me, but I haven't had those episodes since.

I learnt the wiggling trick when I was post-op a few years ago and kept passing out whenever I sat up. Amazingly, not a single nurse could suggest anything - and then a visitor came in and said "Isn't this leaflet about postural hypotension in the leaflet rack any good then?"

Oh, and sleeping sitting up, that's supposed to help too. x

[happytulip]

I have POTS secondary to Lupus. I'd write more now if I could but my hands are too swollen and I too tired. Basically lupus attackedy autonomic nervous system. I could only stand for a max of 1min and 6 seconds before collapsing.

After a year and alot of tests it was found that POts was due to Lupus and my pots symptoms improved when I started lupus meds.

I am really struggling with Lupus though and don't meet criteria for biologicals.

I do know that some treatments I have had have exacerbated pots symptoms.

Its a minefield.

If you have specific questions I will try and answer them but as I say, I am really struggling st the moment so I may not get back to you straight away.

[Melba1]

Thank you that’s really helpful - sorry you’re struggling too. You go to bed and I’ll ask you more another time when we’ve both got the energy (which we will have again! )

X

[happytulip in reply to Melba1]

Thats the trouble... too much pedrest can exacerbate or cause POTS due to deconditioning. I have 5 family members with POTS plus me makes 6. Check out the POTS UK website, its really informative and helpful and they give really good advice. Gentle excersise, and I mean gentle, high fluid intake, small regular meals, avoid caffeine and wear class 2 compression stockings (they need to be measured and prescribed) really helps. The stockings help especially as it stops your blood from pooling. I take a beta blocker and a medication to support my BP too but I have been able to be on the minimum doses due to lifestyle changes.

I did notice that some meds like methotrexate disrupted my autonomic nervous system again so I had to come off that which was a shame because it helped my lupus.

People with POTS seem to be very sensitive to medications and tend to ge a lot of side effects.

Good luck with things. Sounds like you have a good doc, most just want to boot you out of the door. At least they are wanting to get to the root of the problem.

HT.

[Melba1 in reply to happytulip]

That’s really helpful advice - thanks so much!

Do you or any of your family also get it from laughing too much or just eating?? I really laughed today (sitting down) but had the same high heart rate, dizzy, clammy about to faint feeling and I’ve found even eating (not the digestion maybe just the chewing??) has been having a similar effect 🙄

That’s really interesting about the reactivity to medicines link as I’ve had chest pain, palpitations, dizziness after most.

Yes I know I’m so lucky with my rheumy. Wish everyone had such kind thorough ones although he and I are currently arguing over a MRI - I’m very claustrophobic but he wants everything checked. The disadvantage of having such a great consultant is I feel guilty and that I’m not being a suitably good patient in return if I don’t do what he wants! We are renegotiating tomorrow - so expect I will be MRI -ed!

X

[Hidden]

Hi, Ive had a history of postural fainting and due to cardiac and neurological involvement from lupus the cause became alittle confusing. I was passed between the two consultants to find a cause. I too, have a very low BP, and fit the general criteria for POTs. I was given a tilt table test and my BP dropped but my pulse raised to 28 more beats instead of 30 so I therefore was not treated. I am on beta blockers for my heart anyway and as previously said try to rise slowly, don't remain in one position to long, drink plenty, etc. Its not ideal, I still faint on occasions, more so when I am in a flare. I am managing it but not treating it. All the best.

[Melba1]

Thank you - I have taken that advice today and it seems to help!

X

[Angelamarston1963]

My dad used flight socks when he had a similar problem . Stopped the blood pooling and improved calf muscles to help with venous return . Obviously don’t use them if you have any aterial blood supply problems to legs .

[Melba1]

Thank you! Just done it again on standing so seems a likely explanation 😬

[nwfrugalista]

Just found this thread after having posted in the arrhythmia forum because it’s been suggested to me by my Neurosurgeon’s office that I need to be evaluated for POTS. The overlap of SLE/neurological symptoms/POTS brought up by many of you is very reflective of what I am dealing with at the moment. Just wanted to thank the Melba1 and all who replied for the information and tips! Sending healing wishes to all 💜

[KayHimm]

Yes, I have autonomic dysfunction. I think it is rare but studies are showing that mild dysfunction may be more common than they thought. Are you having a tilt table test? Be patient with your doctors. These things are very complicated and can take a while to diagnose. It sounds like your neurological symptoms are disabling. Wishing you the best.