panic attacks...

[whisperit]

...appear to be my latest treat.

I have never experienced them before, but over the past few weeks, when I have a bad day - feeling especially tired or shivery/flushed - I seem prone to mini panic attacks.

Typically, what happens if that I have a passing anxiety-making thought (for instance, I remember that my elderly parent is starting chemo soon) then WHOOOSH! - an instant rush sweeps through my body, my heart races, and I feel flushed, sick and panicky.

What's especially frustrating is that I have no control over this process at all. It kicks in within milliseconds of that thought popping into my head. I can bring it under control quite quickly, but it is very unpleasant.

My guess is that it might be related to my adrenalin/cortisol metabolism being messed up by my prednisilone (15mg a day).

I'm wondering whether things will improve when I finally taper, and also whether doing something about my sleeping would help?

I'd be grateful for any thoughts/experiences?

[Daisy1991]

Hi

I suffered terribly with these until I went on hydroxychlroquine. Mine did not come with an anxiety thought just with hot flashes, but you describe it well. I agree it feels really weird.

[whisperit in reply to Daisy1991]

Thanks, Daisy,

I'm on hydroxychloroquine too. It's like there is no end to the new and "exciting" problems this condition keeps throwing up....!

Good to hear yours have settled down though.

[Daisy1991 in reply to whisperit]

Thank you, yes I agree when you get rid of one, another appears, mine is burning pain in my toes at the moment!!!

[whisperit in reply to Daisy1991]

Ouch, nasty. Is that Raynaud's - or something that lupus has cooked up specially for you??!!! Hope it settles down soon, it must be miserable x

[Daisy1991 in reply to whisperit]

Unsure on either, although I know my fingers and toes don't go white or cold so I don't think it is Raynaud's.

[Wendy39]

Hello

I was suffering from night sweats, hot flushes, depression, anxiety and low scale panic attacks before my diagnosis. Along with the skin problems, headaches, brain fog, fatigue, hair loss etc etc it was a horrible time. But since taking the hydroxychloroquine (and more recently MMF or Cellcept as well) these particular problems have - on the whole - been under control. I still get slight depression and panic attacks at times but these are much more manageable I guess is the word. Maybe it's because I'm aware of it now and can acknowledge it as part of the lupus. Before diagnosis I just thought I was going completely mad! For me, depression is definitely an indication of a flair.

Are your meds working? Or are you in a flare?

We have a lot to deal with, don't we.

I hope your symptoms improve very soon.

Best wishes

Wendy

[whisperit in reply to Wendy39]

Thanks Wendy,

It's hard to know what counts as a flare, as I was only diagnosed in April, and I seem to have got worse ever since - every few days, things are different (and not in a good way!)

I've been suffering with extreme fatigue/weakness and constant shivers/flushes for several weeks now. My resp consultant saw me and said, "Something is going on, but I don't know what" and did various investigations, including a full-body CT scan. I'm waiting for the report next week, and will see my rheumy the following week.

It's a blinking exhausting business!

Glad you seem to have gotten some relief though. x

[misty14 in reply to whisperit]

Good luck whisper it for your Ct scan results next week and for seeing your Rheumy the week after. I do hope they can help you and get you better soon. Tough time your having specially being newly diagnosed. X

[1985mum]

Hello

I get exactly what you describe and yes the smallest thing can trigger it. To me it doesn't feel like it's a panic attack but rather an unnecessary release of adrenalin and our body has no way to use it so kicks off all sorts of flight or fight responses that we don't need to use. Don't know if you get what I mean? I'm still waiting for diagnosis and not on any meds. I get it often and it leaves me very weak.

[whisperit in reply to 1985mum]

Yes, exactly that! It doesn't happen gradually. I don't get any warning signs, I don't get worked up and increasingly anxious. Instead, it's a sudden burst out of nowhere. It really *feels* like you say - as if a big load of adrenalin/cortisol has been suddenly dumped into my bloodstream without warning. It's horrible, isn't it? Hope you get something sorted for yours

[1985mum in reply to whisperit]

At first we thought it could be drop in blood sugar but all my blood sugar tests (every kind you can imagine) were fine.

I'm sure I will eventually get the diagnosis but it's a matter of waiting for the doctors to see lightbulbs! Lupus has been repeatedly mentioned but not taken seriously enough.

Please let me know if you find out any more about it. I would love to know.

[whisperit in reply to 1985mum]

I am trying to persuade my doctors that I need to have a full set of tests for adrenal and thyroid function. The trouble is that without an endocrinology opinion, they are reluctant to look beyond one-off cortisol and FSH blood levels.

The thyroid forum suggests that these aren't a very good guide.

I'll post more as the story develops!

[1985mum in reply to whisperit]

That's exactly what I've found as well.

[whisperit in reply to 1985mum]

As a last resort - a lot of people there seem to recommend buying a kit off the internet and sending it off for analysis. Hope it doesn't come to that, though

[1985mum in reply to whisperit]

I have a friend with very bad addison's and she had the same trouble when it was blatantly adrenal related! She ended up having to go to Houston, Texas to get help. I hope it doesn't come to that as well! I just keep going back and pestering the doctor just to let them know I'm not giving up. Admittedly, the doc I'm currently seeing is bending over backwards for me to find out what is going on but he is still a very 'evidence on paper' doctor.

[Happykins]

Hello,

As the others have said, I experienced this for years, with hot or freezing cold flushes, feeling nauseous, extreme fatigue. My Gp told me constantly that it was anxiety, 'my age' 'all in my head' & so on. Indeed, the anxiety was almost crippling at times.

However, after finally being referred to a rheumatologist ( not by my GP) & being diagnosed with uctd, I started taking mepacrine & within a few weeks realised that the anxiety had practically disappeared.

I still get flares & all the other usual, horrible stuff but it's noticeable that when a flare is on its way, I become slightly more anxious.

The flushes are less frequent too, so I really believe there's a strong link between this & connective tissue disease.

Hope you get relief soon xx

[whisperit in reply to Happykins]

That's interesting, Happykins,

The science nerd in me is fascinated by how the changes in normal cell functioning that this disease causes has resulted in such chaos!

Mind you, I'd prefer to be watching it in a test-tube to being an active participant in the experiment.

Thanks for your thoughts x

[Hidden]

Hi there,

I am sorry to hear that you are experiencing these panic attacks. Anxiety and panic attacks are common in people with lupus and can also potentially be a side effect of steroid treatment.

Please don’t hesitate to visit your GP or consultant again to discuss this further and ask them what additional support may be available and to run all the additional tests.

You might find our leaflet on lupus and the brain useful as well lupusuk.org.uk/wp-content/u...

[whisperit in reply to Hidden]

Thanks, Fabienne, I will be discussing this with my rheumy and chest consultants next week