lupus and pots/dysautonomia

[brave]

Hi all,hope everyone is managing well??haven't blogged in a while ,unable to type due to severe migraines and light sensitivity;((ive been going through hell ,my whole system is breaking down ;(even a conversation sends me over the edge,im suffering from autonomic dysfunction which is torture ,anything sends me into overdrive ,im on a beta blocker to calm the sympathetic system however not really helping ,anybody have tips on beta blockers or autonomic dysfunction?and what meds are known to help ?many thanks guys ,brave

[steadilymovingforward]

Hi, I had never heard of this until you posted it and I just googled it. I get similar issues, tachycardia, sometimes extremely fast, pain when lying down or suddenly fast when I lie down, dizziness, sometimes breathless etc...just assumed it was pericarditus, maybe dysautonomia is a symptom of this?...not sure...it comes and goes with me but I find avoiding caffeine and alcohol helps. Cardiologist offered me beta blockers but he said they would really slow me down and fatigue already does this so I declined and luckily it improved on its own.

Have you researched herbal remedies for slowing a racing heartbeat?...would need to check with doc though...

Good luck xxx

[brave]

Many thanks for info ,I don't get racing heart rate just irregular ,been under a cardio for years ,but all the other symptoms I get ,including extremely painfull lymph glands which worries me the most ,do you get sore lymph glands?

[steadilymovingforward]

I get swollen lymph nodes and a bit tender which LUPUS UK says is normal and also irregular heartbeat which the cardio said some people get and it's not dangerous...

Sorry that you're having such a rough time...hopefuly it's part of a flare and will eventually subside?xxxx

[Purpletop]

I can't believe that you're still so poorly after all this time, you must be utterly fed up! Did you go to a specialist in autonomic dysfunction for a second opinion on treatment? What a nightmare!

[brave in reply to Purpletop]

purple top;)))im hanging on by a thread,im soooooo exhausted with the effort to find answers to my symptoms,my adrenal tests were normal ,my thyroid was normal,cardiologist wants to investigate my heart issue further ,I have a hole in my heart ,im on beta blockers for migraine and neurological symptoms ,I raised the dysautonomia with my consultant who agreed that I fit the symptoms and pattern ,so hes willing to look into sending me to a speacialist in uk ,as here in the channel isles they don't do autonomic testing ,so at least their taking me seriously at last ,in the meantime im climing the walls with complete exacerbation of all symptoms tenfold ,I feel so out of control ,I feel I need a medication to calm my overstimulated exhausted system ,I haven't slept in months ,but I have no stamina either ,I don't get it????my glands are ssssssoooooooooooooooooo sore ,any of this sound familiar???my nerves are fried,any advice?hope your well purple top x

[Purpletop in reply to brave]

Well, hopefully the specialist will find the right treatment, it sounds horrific what you're going through. I doubt there is anything you can do about it until then. Of course you are exhausted and at the end of your tether and your nerves are shot but as far as I understand it, the symptoms of dysautonomia will eventually go away on their own and faster if you do some gentle exercise, apparently. But I'm not a specialist, hopefully you'll soon see one - do you have any appointment sorted out?

[brave in reply to Purpletop]

purple top .....thankyou x

[Poorly_Poppet]

Heya. Brand new here and not sure exactly how this works... I was diagnosed with lupus in 2008 and PoTS/autonomic dysfunction in 2012. I'm yet to come across with someone else with both illnesses (I also have EDS type III, fibromyalgia, Raynaud's, gastroparesis, depression... And something else I can't remember at the moment - stupid brain fog!) I had my autonomic testing done at the National Hospital for Neurology and Neuroscience but their waiting list is so long I'm seeing a plain cardiologist who seems informed. I've been taking 5mg bisoporol (beta blocker), 10mg 4x a day midodrine and 200mg modafinil (cognitive/alertness enhancer) for about a year now. My symptoms have improved - I was practically bed bound for 18 months. But I am still completely debilitated by it. I have syncope/pre syncope attacks multiple times a day, I can't leave the house unaccompanied, I have to use a wheelchair, my pulse races to 160 bpm + when I stand up, with my BP barely reaching 90/60. Happy to answer any questions/share any info I have if it's helpful to you. But I hoping that you're feeling much better as 6 months have posted since you posted this!