I've had a few weeks where I the daily flushing/nausea/shaking episodes had eased off. But this week, they seemed to be returning.
This afternoon, I had a dramatic demonstration that they must surely be related to adrenal dysfunction. The morning had been ordinary, with me simply pacing myself through the usual chronic fatigue routine. I was feeling perfectly "normal" and had just written an email to a friend. Moments later, it occurred to me that a little joke in the message could be misconstrued and seem a bit insensitive. It was the sort of thing that normally might cause a little blush and a follow-up email saying, "That was a joke, btw!" Nothing more.
But this time, that thought - and it was undoubtedly just the thought - instantly caused my whole body to break out in a soaking sweat and I started retching. I could feel my heart racing fit to burst and the muscles in my neck and arms went rigid. This lasted for about 10 minutes. Typing now, about an hour later, I seem to be almost recovered, but am left feeling shaky and nauseous.
I have noticed various internet forums on autonomic dysfunction where people talk about "adrenaline bursts" and/or "catecholamine dumping" .
I've had a cortisol level done last year, and a couple of thyroid (LSH, T3 and T4) levels done in the past, but not in any systematic way. I've been referred to endocrinology but wont be seen until next March.
Anyone have any thoughts or experiences on this? Any ideas for "first aid" while I wait for this appointment? Or what information to gather prior to it?
x
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whisperit
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I think you might he on the right track with the adrenaline bursts. I haven't had one of these episodes for ages thankfully but I remember my GP at the time talking about autonomics and adrenaline. To be honest, I always thought it was more like a drastic blood sugar drop as I'd feel the need to eat and this would often calm things down a little. I never really did get to the bottom of it but I know it's awful to deal with. Sending a big hug X
Like you, hypoglycaemia was one of my thoughts and recently I've done hourly
blood glucoses, but found I never seem to go hypo, even during an episode.
All my medics have simply dismissed the possibility of an adrenal type problem - my rheumy says it's fibromyalgia, my GP and the neurologist I saw recently have no idea.
Hope things have settled for you in this regard - as you say, it is very unpleasant and debilitating. x
I so wish doctors would stop labelling what they don't know as either anxiety or fibro. It's interesting to hear though that you've checked your blood sugar levels during an episode and it was normal. I guess this points to an adrenal problem.
Hope you feel better soon and get to the bottom of it. X
I was getting similar horrid "adrenaline " rushes about ten years ago and they were also triggering Coronary artery spasm. They usually would happen between four and six in the morning.
After an episode I was left with constant angina, breathless ,grey and feeling like death. I was taken to A and E five times in three months with this as it looked like a heart problem.
First thing discovered was very low potassium, in fact I have chronic low potassiun not helped by diet. They put me on 6 grams a day and that got rid of the heart arrythmias.
I was given all the heart tests and angiogram and they decided microvascular angina but I also had chronic low cortisol and once I was put on a low dose of regular daily hydrocortisone those weird rushes disappeared. They were absolutely terrifying as it did feel like a heart attack each time.
Since then Seronegative Sjogrens is suspected and I have been on three month Depot Medrol Injections plus oral hydrocortisone for almost four years. I also have to top up with a little oral Pred most of the time.
I am over sensitive to all drugs including the steroids but can just manage to tolerate the amount I am on. The injections are strange, sometimes they work really well, other times not much help at all.
I so understand how you are all feeling, I have been in a flare of everything since this cold weather appeared.
Joints and all muscles weak and sore, brain totally frazzled and fatigue off the wall. At night I just sleep in two hour spells, awake for hours. I wake pouring with sweat then freeze and need hot water bottles. No easy answer with any of this.
But the hydrocortisone did help the adrenaline rushes better than the Pred.
I havent seen an endocrinologist for over four years, seem to be thin on the ground in Scotland and mostly interested in diabetes not a weirdo like me with strange symptoms.
Sorry you are having to wait till March to be seen.
Would your GP maybe let you try a little hyrocortisone and also check potassium. With me my blood sugar was fine too. X
That is EXACTLY how it has been for me for over a year now, including the heart discomfort, and the night-time waking. Last night, I had to have a hot water bottle to feel at all comfortable, and yet also a cold flannel on my face because of the burning hot flush I had at the same time. In total, I managed to doze for about an hour in total.
I had two emergency admissions last year, during both of which I suggested adrenal issues as a possible explanation. But my cardiac investigations show nothing abnormal (although I can *feel* that it is struggling), my potassium levels are apparently normal, and I've only ever had a single random cortisol level done.
Do you have any explanation, or a "story" that makes sense to you about how this has all come about for you?
Because my bloods have always been seronegative it has been a real battle over decades to get treatment ,as I knew in myself something was very wrong.
To be honest it was finding some first class medics and going privately got me some kind of diagnosis and at least got me on hydrocortisone initially and then also the Depot Medrol three monthly injections and oral Pred. I react very badly to steroids generally, am just oversensitive with massive hot flushes amd bloating on small amounts.
I suppose my main Eureka moment that helped the medics with me was after an operation ten years ago for a ruptured disc in my neck which was dangerously pressing on the spinal cord.I had a swift operation and immediately after all joint pain, dry eyes, muscle weakness, headaches, rashes and biliary and pancreatic problems etc vanished. This lasted three months then the problems returned.
The neurosurgeon said he had given me a large long acting dose of dexamethasone at the operation but I didnt know this till four months later. This steroid is much more powerful than Pred and usually used only by neurosurgery. He then said all my other problems apart from the neck must be autoimmune and so I needed to see a Rheumatologist promptly.
I was given hydroxichloroquine but it upset me badly so the Pred injections were begun.
If you look back in my old posts from a while ago my whole story is there.
I have been following with interest your own problems with steroids and they are so similar to mine.
I am awaiting seeing a new gastroenterologist at Glasgow Royal hopefully soon and see a new Rheum there on Nov 28th as my old one has retired.
Like so many I just hirple along from day to day. I am 64. live with my husband, 4 "kids" also have grandkids,and one adorable collie dog!
I gave up work at the age of 49 as fatigue and joint pain were totally bone crushing as it still can be much of the time.
Today am in bed all day with massive flare just because the weather has suddenly become slightly colder!!!
This forum has been life saving in the last few years since I joined. I dont post much but read how others are getting on every day and pop in when I can.
Please get intouch if you want to find out anything else or send me a PM.
Very unsettling and uncomfortable for sure....before I was dx'd with Lupus, I would think major panic attack....but now I/we have to consider the Lupus connection.....I can't stand that Donald Trump is US president...other than that, I feel fortunate as far as the availability of good health care and quick appointments...I would NEVER survive emotionally if I had to wait So LONG for a what I think, is a very important Drs appointment...until then, what I wonder can you do???? So sorry you are going through this
Yes, thank you. I worked a as mental health professional for over a decade, so I know that it *isn't* a panic attack. But one of the problems is to convince the medics of this - how do we get our doctors to really listen to what we are saying?
As for the endocrinology appointment, I will see my GP again next week, to see how far he is able to progress some of the basic endocrinology tests and then consider whether going private for the initial specialist consultation is worthwhile.
Biggest pet peeve is that everyone assumes it's anxiety or a panic attack. I had a rough episode the other day... And, you know *they* (friends, family, acquaintances) are whispering.
Yes, I understand it isn't a panic attack ...I kind of was saying that before I was dx'd, Drs and I would think it was panic...Not now, Breast cancer 12 years ago ,and now Lupus...Drs take me seriously....no more being accused of looking for a zebra in a field of horses..or catastroph(sizing), as one dr put it, when I found a lump 6 weeks after a negative Mammo!...I am glad you have a plan for your issue xx
Yes, I understand. And of course, the fact that one is anxious that something is being overlooked or misinterpreted can be translated into "this is an anxious patient - so the symptoms are probably due to anxiety"!
You must have been very determined and resilient to have kept insisting on what you knew to be right x
So sorry you suffered such a horrid attack of sweats, nausea racing heart and have to wait such a long time to see an endocrinologist!. I am like Cutty sark in that I've got heart palpitations and racing heart beat due to low potassium. Other symptoms too come with it but not like yours. I saw my GP recently and he talked about adrenaline being a cause!. It's our bodies fight or flight mode I guess. Just wondering if your potassium levels are ok. I'm going to be re- tested soon as I was borderline for a supplement!. Long term steroids can cause low potassium and I've had a history of this over the years!. March is such a long time for you to wait for this appointment. You could get on cancellation list if you don't want to raid your piggy bank for a private consultation!. I do agree that doctors are quick to label things anxiety or Fibro when they don't know , when actually there can be another explanation!. It can be frightening when these things happen out of the blue!.
Harry sends his best to hedgewig, hoping he's found a good nest to hibernate in. Wish I could be more helpful. Hope you find an answer soon. X
That IS helpful, misty. As I type, I am eating as much of a supper as I can manage comprising foods that Dr Google tells me are high in potassium!
Hope Harry is doing OK. Hedgewig has been scrounging under the birdtable again this morning but refused the catfood I offered. What is going on in that prickly little mind? x
Do hope it helps Whisperit. Our hedgehogs are eating us out of house and home ready for hibernation!. They are their own characters too and funnily enough do eat our bird food from under the bird table as well. You might like to try dog food if hedgewig continues to refuse the cat food!.
Hope your mum is improving and you find answers soon. X
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