Weekly collapses

Hi..

So the last two months have been really rough for me, after doing gradual exercise for some months. I made a post about it a while back. Since then ive been having problems e.g making dinner some days due to low functioning, but the biggest fork in the road right now is that I keep getting these panic attack esque collapses where I will go to the ground with a heart beating out of my chest, shaking and panic. I can usually feel these episodes coming hours before, starting with my stomach acting up and generally feeling wired. Ive been to the emergency room like 4 times already (called them like 8), and these episodes are really draining. I mean it feels like i have to die once a week, and I rather die, well - once.

I'm struggling to understand what I can do about it, and why its happening. My orthostatic intolerance is pretty pronounced right now, so maybe its related to poor autonomic functioning (it usually happens when standing).

Anyone experienced anything similar? I don't know if its ME-related or not, and therefore don't know what to do about it. Ive had similar episodes in earlier crashes, but the frequency of them is a lot higher this crash. Is it my body telling me to lie down? In that case why does it have to be so dramatic about it

Thanks for reading, i find it kind of embarrassing so I rather ask here than on e.g Facebook

 

In case you have not been tested for POTS, it would be a good idea to do so.

 

When you feel that this is about to happen, you could drink plenty of salt water and lie down, with feet elevated above the level of your head. Does this make it better?

Does this tend to happen within a few hours of eating?

 

@Marky i experienced something similar when my OI/POTS worsened.

I got awful adrenaline surges which made me tachycardic, wired, jittery and with greatly reduced emotional resilience. They were most unpleasant and exhausting and lasted for hours with the after effects for days.

They seemed to occur mostly as an over correction when I was trying to relax into PNS. My theory anyway. This along with the orthostatic tachycardia made my life a misery as I was so symptomatic and tachycardic when upright, but also had these surges and tachycardia when trying to rest.

Beta blockers have helped, I still get mini surges but they are manageable. Still get orthostatic tachycardia but not so bad.

Have been told I easily meet criteria for POTS (168 BPM on stand test), awaiting consultant at Addenbrooke's for further advice on meds etc.

 

@Daisy That sounds similar! I dont have high bpm when standing, but I do get higher blood pressure upright (both kinda does the same thing?). Keep me posted on what they tell u

 

Yea we don't really know what to do. I`m legit clueless as to why this is happening

I just wanna feel like shit again..

 

I'm assuming you are male?

I've had (and still have) similar episodes since menopause started a few years ago. They feel like adrenaline surges.

 

Here is something I found regarding adrenaline surges:

Medical conditions that cause an overproduction of adrenaline are rare, but can happen. If an individual has tumors on the adrenal glands, for example, he/she may produce too much adrenaline; leading to anxiety, weight loss, palpitations, rapid heartbeat, and high blood pressure. Too little adrenaline rarely occurs, but if it did it would limit the body's ability to respond properly in stressful situations.

 

Could it be hypoglycemia (low blood sugar)? There are loads of different causes for hypoglycemia and there are pages galore on the web with lists of causes, symptoms, and how to treat.

https://en.wikipedia.org/wiki/Hypoglycemia

https://en.wikipedia.org/wiki/List_of_causes_of_hypoglycemia

 

Inappropriate exercise?

 

I've experienced this over decades.

I believe that the health community has this particular biology exactly backwards. If you google anything around adrenaline (epinephrine) surge you get only and always a commentary on psychological fear and/or anxiety causing this.

This has absolutely not been my experience. The surge starts and then I feel what amounts to anxiety. Something is wrong with how this system functions. This release of adrenaline is aberrant. I have been woken in the night with these surges in the past. And these surges (when they are frequent) coincide with further deterioration in function (and may as Strategist points out) be what leads to permanent POTS symptoms.

I have no science knowledge to posit any theory but I do understand this well from experience. Medicine seems to have no clue that this can happen without there being some psychological/behavioural manifestation first. All I know is that I am very sure this is wrong.

And it causes people to doubt themselves and think they are frightened people easily made to panic over ordinary situations.

I'm not sure what there is to do. I do make sure I take salt, and magnesium. But I've noticed that a regular intake of magnesium needs to be balanced at times with some potassium too. My symptoms of surges are now mild but my functioning has not improved.

It would be good to investigate ways of differentiating this from symptoms that might indicate a heart attack/MI as this seems to be a general concern.

 

Thanks for sharing, and i could not agree more @Snowdrop! The episodes are so intense and out of the blue that I cant understand how my thinking contributed to it. Obviously your train of thought can lead to phobias etc, but I dont think u can think yourself into having these attacks. It just does not really make sense.

"It would be good to investigate ways of differentiating this from symptoms that might indicate a heart attack/MI as this seems to be a general concern."

Yeah, i think severe chest pain is a major one, and past history. Thing is though, when I get these episodes its straight up impossible to not assume you are going to die because your whole biological system is complete fear and panic. Its so hard to think straight, even when I have decided the same day that I will not call 911 I still end up doing it. I mean im lying on the ground with heart banging on my chest, body shakes, difficulty breathing and speaking - and I already feel shit because of my ME - how am i supposed to be able to conclude in the moment that this is not acute?

 

Hey! Yea I`m male. I did actually check blood adrenaline levels back in 2014 cause i was having similar episodes when I first got sick. They were normal.. I think that the ME is causing this somehow, cause they happen when my ME is bad. But I have no idea how.. I read that with adrenal tumors you will get headaches, which I dont get so I dont know

 

I'm not sure. I was thinking there might be some sort of medical device that is available for use at home. But I don't really know much about this. When I had major surges like this there would have been no tech available. And I suppose it would really depend on noticing early and being at home too.

 

+1

Brilliant post @Snowdrop

 

Could you get a cheap Heart -rate monitor to record what's going on when this happens, to take to a doctor.

 

I guess i could ask for another holter test, although I dont think its a heart issue it might be a place to start i guess! Thanks

 

@Marky, so awful you are having these worrying and terrible symptoms.

I get the heart racing, faint, nauseated feelings often with upright positions.
Used to get adrenaline surges the moment I woke up. I don't think these were psychological as I was just waking up.

I did a holter monitor some years ago. I was given a chart to write down symptoms, and what I was doing at the time. I wrote down when I was standing, and when supine, so the physician interpreting the results could see what my HR was during standing versus supine.

I hope you have improvement soon, and can also get some help with this.