Autonomic crises?: Anyone have any experience of... - LUPUS UK

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Autonomic crises?

whisperit
whisperit

Anyone have any experience of this?

In the absence of medical assistance, I continue my efforts to self-diagnose. As some here may know, after several months on the usual hydroxy and prednisolone treatment, I developed daily episodes of severe sweating, flushing and nausea. They slowly eased after I had remained on a much lower dose of pred (4mg) for a bit. However, I was left with extreme fatigue.

After being diagnosed with adrenal insufficiency last month, I was encouraged to add another mg of pred to my daily dose, to improve the fatigue. The result has been the return of the sweats, shaking, nausea and weakness, which has not improved after returning to 4mg.

All medics are baffled. They can offer no diagnosis, explanation or treatment.

To my mind, these episodes seem very similar to descriptions of "autonomic crises" seen - for example - in people with central nervous system damage. These crises may be caused by an imbalance between sympathetic and parasympathetic nervous systems, whereby the activation of the adrenaline system by the sympathetic NS is triggered by small triggers, and rather than being inhibited by the parasympathetic NS, the activation runs on, or is even enhanced. Ideas for treatment seem limited, but gabapentin and pregabalin have been mentioned in some places.

Any thoughts, lovely people?

24 Replies
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Hidden
Hidden

Lots of thoughts Mike - and much sympathy too. But none of it very intelligent or sensible really. I’m amazed that you haven’t been rushed into endocrinology or other for observation under the circumstances.

Have they tried you on hydrocortisone yet? I know someone who had a pituitary tumour and is permanently on cortosteroids and some sort of growth hormone now I believe. His symptoms sounded rather similar to yours. Is there a charity or forum for Addison’s perhaps where you could ask?

I’m in bed with yet another cold/ virus/ wipe out sniffle thing. Paying a price for something no doubt. Lots of sweats, strange feeling of disorientation all the time and a slow nasal trickle and all body ache. I don’t feel ill or mentally unstable or depressed or anything. I take vitamin C and make myself walk the dogs for 20 mind so nothing to blame this on but a defective immune system and uncontrolled inflammation probably.

But the feeling of no medics helping us or appearing to care is really pretty depressing I feel. But at least you know we care - for all the good it does!

I believe I have autonomic dysfunction and this is causing my inability to stand for longer then a minute without crumbling. No one has told me this as such but I think it’s presumed for many of us as part of Sjögren’s and Lupus. All I know is that some extra salt and tons of water are supposedly beneficial - controlling diet and all that blah. I’m too 🤷🏼‍♀️ to sacrifice any favourite foods just now but once my rheumy has almost certainly pronounced that there’s nothing they can do for me on Tuesday - then I’ll have to go back to basics I guess. Xx

whisperit
whisperit in reply to Hidden

Thanks Tt,

You're having to find your way through a maze even more convoluted than mine.

I've spoken with people on the Addison's/adrenal insufficiency support group, and they point out that many are maintained on a mix of hydrocortisone and pred, as you suggest. But my GP is adamant that it's got to be one or the other, and I am too scared to try a wholesale switch while I am feeling as unwell as this. I was too discombobulated in the appointment to realise that I could ask for a hydro script but then make my own mix!

This mysteries of the autonomic system are deep.

x

Hidden
Hidden in reply to whisperit

So underestimated is this autonomic stuff Mike.

There are 2 chaps who run an LDN FB forum and have seronegative Sjögren’s - both PhD biochemists by background. One is a bit scary in his conspiracy theories and far too confrontational for me. But the other, admin of this community and “an outsider artist” - and is far more circumspect.

Both are adamant that Sjögren’s is first and foremost a disease affecting the autonomic nervous system rather than the just the secretory glands. The angry one is very hostile about rheumies the world over. I found his perspective rather fascinating but ultimately I’m an artist with no scientific background at all so I felt bamboozled by him too - especially as I don’t take LDN - the only trusted elixir for them.

They were horrified that I was taking Mycophenolate! So I have stopped reading or following their posts now. But I think there’s definitely a lot in their theories about the defective autoimmune system coming under the umbrella of autonomic dysfunction.

However - getting back to your question - it is hard to contemplate going it alone with meds and dosages and mixes when we have such serious conditions. What are you like with your doctors I wonder?

Can you be extra assertive or just keel over in the consultation perhaps - forcing their hand to get you specialist input on this? My Addison’s and Sjögren’s friend switched from Hydrocortisone after years on it - to Prednisolone recently.

I will ask her for you as she has had Addison’s for much of her adult life now. She was in intensive care as a young woman, days of death from what they thought was ME - turned out it was adrenal collapse from Addison’s. I’ll phone her now and let you know what she says as she’s very wise. X

whisperit
whisperit in reply to Hidden

I have "met" someone on the Addison's group who describes having these "crashes" for the last 8 years, despite being well covered from an an adrenal replacement pov. She too has concluded it's something to do with autonomic/catecholamine imbalances, and has found temporary relief with an off-label drug - but it's too potent to use for long, and why it seems to work is a mystery.

x

Hidden
Hidden in reply to whisperit

Okay well I spoke to my Addison’s friend on phone and she is adamant that Addison’s is a very serious, potentially life threatening condition. And, although you’re “lucky” in a way to already be on Prednsisolone - you may need to be on Cortosol and another one (sorry can’t recall the name) instead of Prednisolone. She says there’s no way a GP should be making these decisions and you should be referred urgently back to endocrinology for monitoring.

Your hospital should be having you in as a day patient and measuring your cortisol levels first thing in the morning and then at regular intervals through the day. She says your symptoms sound just like hers when she’s having adrenal crisis and it’s ridiculous that you’ve been left to manage this yourself on your own.

She’s had Addison’s for 30 years now and she sees her endo three times a year and says neither he nor her rheum or GPs have a clue so she jiggles with her cortisol (Pred wasn’t working out so she’s back on Cortisol - wouldn’t mix the two) herself now. But this is after long experience.

I don’t know if this helps much but she said please insist on endo input as it’s far too serious a condition for a GP to manage without specialist input. X

whisperit
whisperit in reply to Hidden

I really appreciate the time and effort you put in on my behalf, Tt, that's very kind. I have indeed rung the endo dept to ask to speak to the endo who saw and discharged me (before the synacthen result). It did seem to me extraordinary that he thought it would be OK to give me a diagnosis of adrenal insufficiency in a letter, and without seeing me again to explain it or anything. Anyway, he's now on holiday (!), so I spoke with someone else in the team who says she will ask him to see me again when he gets back.

Meanwhile, I'm going back to the GP tomorrow - and making sure I see someone else this time!

Hope you are managing to enjoy some of this midsummer weather in an appropriately healthy way

X

Hidden
Hidden in reply to whisperit

Oh hell’s bells Mike - what on Earth is happening here?? I mean I’m in a not dissimilar state of confusion and bitterness over the stuff that’s happening to me with neurology and rheumatology - particularly neurology. But they have at least run tests for CNS involvement 18 months ago and they have looked at my brain and my reflexes are all good. So I can see, from their perspective, why my tremors and numbness are not viewed with great urgency. Damage already done is to my small nerve fibres and some autonomic dysfunction - nothing they can treat even if it appears to be progressing. That’s the nearly understandable assumption I’m up against.

But adrenal failure is something they should be acting upon right now - and so is a raised CK. Your GP appears to me to be walking on very thin ice - charges of medical negligence ought to be ringing in his or her ears. All this blah - they should be running about you like white coated flies?!

The endo discharged me once Addison’s and diabetes had been properly excluded - but I think this was quite reasonable in my case. Particularly as he directed my GPs to not let my TSH rise above 0.1.

Being discharged is absolutely unreasonable in your case - I do hope he’s having an unsettled holiday with something niggling hard on his conscience. Sun bed and wine marred by something in his ear going “Whisperit.. Whisperit.. Whisperit”!!! X

whisperit
whisperit in reply to Hidden

Lol! Just a quick question - I've forgotten - what's been your experience with gabapentin or pregabalin to date? x

Margas
Margas in reply to whisperit

Hi Whisperit and Twitchy! I too was on pregabalin for one month due to muscle burning and weakness which my rheumy associated to neuropathy or fibro. (I also have cutaneous lupus). When I increased dosage to 2 pills I couldn't stand the terrible headaches. I phoned my rheumy, went back to 1 pill and my neurologist prescribed me another antiepilectic: Topiramate. I am feeling great since then. My brsin fog is vanishing. My humour is returning. And I am increasingmy dosage as I listening to my body. My muscles are calming down too. Even my spine. In two weeks I have an appt with Dr. António Marinho to see if finally I am in the right path. Hope this helps somehow...

whisperit
whisperit in reply to Margas

Thanks Margas - so your prescription was to help with the symptoms of muscle pain and weakness? Great to hear things are working! x

Margas
Margas in reply to whisperit

Hi! Not only. Brain fog as well. And muscles. Yes. I used to walk between 6 -7 kms every day for 25 years. And every time I tried to walk about 500 metres around my house the next day my muscles on my legs ached so much that I had to stay in bed almost all day long. My spine and even my arms as well. And that burning all over my body even without walking. Since taking topiramate everything has improved. I have gone out for shopping like before on the same rhythm. Today I am trying to walk again for 15 minutes....

whisperit
whisperit in reply to Margas

Thanks, and good luck! x

shaunalouise26
shaunalouise26 in reply to Hidden

Hi I have orthostatic hypotension diagnosed by a tilt table test. Also having a lot of nerve problems so I believe that my nervous system is being affected x

Hidden
Hidden

Gabapentin, which I tried about 3 and a half years ago - made me dizzy, even more tired, angry and gave me double vision. I actually walked in to see my old island GP and told two of her that I demanded that my referral to neurology be expedited as urgent. She got annoyed back and said “so you think you’re urgent - what about my patients with suspected MND?!”

But magically it was expedited and the neuro seemed to think I was quite urgent too until MS had been more or less excluded.

I still have my recently prescribed Pregabalin sitting in my meds drawer. I took one for 3 nights and then bottled out - not for side effects but for fear of them and also because my muscular pain in neck settled with Naproxen after a few days. I fear mind altering drugs greatly. At least with DMARDs our bloods are well monitored and we can come straight off most of them without harm. I did manage Amitriptyline for 3 years without problems until I realised how dry it was making my Sjögren’s eyes and that it was the cause of my heart palpitations. X

Much thanks - I'm in the middle of an email to another suffering soul. Putting our experiences together is very useful - what would we do without each other???

I now what you mean about mind-altering. But as I have spent most of the last 2 days in a darkened room with an ice pack on my temple, mine's no use to anyone atm....x

Hidden
Hidden in reply to whisperit

Maybe you really need to get onto better disease modifying meds and get your Addison’s properly treated Mike?

I don’t do well on many drugs but when they occasionally work then I feel like a lottery winner. The Gastro I saw twice gave me a new IBS-c drug that has been life changing. The endo raised my dose of Levothyroxine and that was really good too. Both have discharged me now but that’s okay because I have gotvthe treatments out of them that are working.

I think you need really one really good doctor and I urge you to keep looking until you find one. It doesn’t matter if it’s an endo or rheum or GP as long as they can get you up and out of your darkened room, ice pack free. Failing that please kick your existing doctors into shape - threaten legal action - whatever it takes Mike. X

I'm in complete ignorance about this subject Mike, but sending a cyber hug.

Despite my experience of gabapentin I'd try it again if I was as ill as you are. Pregabalin might be worth a try too, but really, it make me very cross that so little is being done for you.

whisperit
whisperit in reply to Lupiknits

Thank you Lupi, yes, you're not the only one who doesn't understand all this stuff! So pleased I saw a good GP this morning, who seemed to get how difficult things are now. Hope you are coping OK atm and sending a cyber hug back x

I really think you need to go to hospital Mike. Like twitchy says, adrenal crisis would be taken very seriously. I’ve had several doctors lecture me on the dangers and say if I get the symptoms (which you’re getting!) to seek immediate medical help. I don’t know whether it comes out of the GP budget to send a patient to A&E so they might avoid it? Your GPs haven’t sorted it so far so think the time has come to find a hospital that can sort it out. You’ve been really poorly for too long now, sorry to be bossy but please GO TO HOSPITAL!! And don’t leave without an answer/ plan.

On the autonomic dysfunction side, I very much agree with your theory and have looked into this too. I’m seeing Prof Mathias at the autonomic unit at National neurology hospital in a couple of weeks but it’s a long waiting list on the NHS (3-6 months I think) so I’ve gone private but it’s £290 for an hours appointment. Can you insist your GP refers you there as they are the UK experts and will hopefully have some of the answers we all seek and some treatment ideas?

X

happytulip
happytulip in reply to Melba1

I go to the autonomic unit set up by Prof Mathias at the national Hospital for neurosurgery and nervous diseases. As do most of my family. Every consultant I have seen has been brilliant.

Mike, you really need to get someone to take your adrenal insufficiency seriously, a GP cannot manage that and I'd be weary of any GP who says they can.

Your other symptoms do remind me of some of my symptoms before I was treated for POTS, ie tremors, fatigue, sweats etc. The nervous system is so complex that after all the nonsense you've been through I'm go straight to a specialist centre like Queen's Square and avoid anyone else!

Good luck Buddy

X

Melba1
Melba1 in reply to happytulip

Yes that’s what I thought about Mike’s symptoms when I had drug induced dysautomnia - very similar.

What was the treatment they gave you please happytulip?

X

happytulip
happytulip in reply to Melba1

My POTs is secondary to EDS and Lupus. So my POTs treatment is fludrocortisone to beef up my BP and bisoprolol to slow my heart rate.

I am one of 5 cousins with POTs (all female) and one of the males has IST inappropriate sinus tachycardia and is on bisoprolol.

Basically we should get a loyalty card!

whisperit
whisperit in reply to happytulip

Thanks HT

I was down the GP first thing this morning. Finally saw the one star GP they have, thank goodness (she's been on maternity leave). She actually listened to what I said. prescribed some extra meds and while I was there, emailed the endo who discharged me to ask him to see me again urgently.

So I hope things will move forward now. Meantime, I will look into Queen's Square. Thanks!

x

Just read your post, I hope today will mean they get things moving for you very soon!!!! Lou x

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