Weekly collapses

This really does sound like autonomic problems. My POTS doesn’t usually manifest like this but I have seen plenty of discussions about attacks that seem like panic but are not.

I had something similar once after going out to a GP appointment which always seems one of the hardest outings and when I got home I collapsed in the hallway and was sobbing and couldn’t breathe properly and heart racing etc. But inside I was just thinking “oh this is a bad POTS episode, if I lie here it will pass” so although it was a surprise and not normal for me I wasn’t especially anxious.

Is there a POTS/autonomic specialist near you that you could be referred to about this? They may be best placed to check you over and know which medications to try.

I would say also try to get some intense rest and let your system calm down as much as possible and see if it improves. Your body is trying to tell you something, probably about that exercise regime... And while doctors probably won’t have the answer I agree about getting it on your records. It maybe already is if you have been to hospital/called 911. I take it you are in the US!

 

I agree totally with @Snowdrop . In my experience the anxiety is a consequence of the adrenaline surges not the cause. My view is that it is not surprising that I feel wired, anxious, reduced emotional resilience, with enough adrenaline racing round my system to escape from a sabre toothed tiger, but all I can do is lie on the floor with my feet up on the bed until it eased a bit. Of course for pwme it isn't possible to exercise the adrenaline away.

When I had my stand test at Addenbrooke's they took blood samples for catecholamines, and it will be interesting to see what that revealed if anything. Although I didn't have an adrenaline surge while I was there. I've found that I don't tend to get the surges when I'm already "stressed" for another reason.

The sense of calm when I first went on the BB was a revelation...I've built up a bit of a tolerance now, so it isn't so marked unfortunately. But I remember thinking, some people are calm like this nearly all of the time, no wonder some people find it easier to cope.

The biology of all this is fascinating...but the research into autonomic dysfunction still has a very long way to go. And specialists are like hens teeth...

I suspect menopause worsened my underlying ANS dysfunction..but a bit of a double whammy if a woman is menopausal in her 50's that takes her out of the usual age range for POTS. So it is a poorly understood syndrome, with few specialists, outside normal range...

There was a talk by Nick Gall who is one of the few pots specialists at a cardio conference this year.
https://www.touchcardio.com/media_g...e-2019-a-guide-to-pots-and-ist-nicholas-gall/

The point he made was how many other body systems are affected, not just a cardio problem. It's a systematic disorder needs to be treated as such:
Dysfunctional breathing BOE, very common
GI symptoms
Bladder symptoms
Sleep disturbances
Migraine
Allergy
Hypermobility

Lots of food for thought.
I can really emphasize with anyone who has these adrenaline surges..it's a long running horror film of its very own on top of M.E.

 

Yea ive decided I have to try to "aggressively rest" (funny term), which I am notoriously bad at. Every time i fail at doing something, I will try doing it again straight after out of annoyance.. Ive also forced myself to travel to band practice, which is kind of ridic to do in a period like this..

Thanks for your insight and advice

Edit: Looks like i failed hard at the quoting

 

Thanks for the link! Yea its funny its called flee or flight-response because i have been unable to do anything else than plant my body on the floor when I get these surges. I would have been eaten by dinosaurs so easily back in the day..

Interesting about the beta blockers, and nice that u found something that worked somewhat. Im not sure I would be a good candidate as my resting heartbeat is 60, you dont want your heart to pump tooo slow

"I can really emphasize with anyone who has these adrenaline surges..it's a long running horror film of its very own on top of M.E."

Yes! Its like constantly having that feeling before the jump scare

 

Is that the version of 'fight or flight' used in the US? But the two alternatives seem to mean the same!

 

Hahaha as u can see I am slightly brain fogged when I wake up! Goodness me

 

Adrenaline surges noted on this website about patients' experiences with POTS:

https://themighty.com/2018/12/postural-orthostatic-tachycardia-syndrome-symptoms-less-known/

 

@Marky I wouldn't discount BB totally. My RHR is mostly in the low 60's again now, which is where it was before the POTS worsened. The tachycardia has been blunted.

I'm on a very low dose of bisoprolol. It's probably dropped my RHR by about 7 - 8 BPM. You may wish to discuss with your doctor if s/he thinks it would be worth a try.

There are a number of BB that can be tried, and even different brands of the same BB can have a different effect.

@DokaGirl thanks for the link. Adrenaline surges don't seem to be mentioned much which is surprising considering how disabling they are.

 

@Daisy

You are welcome.

Yes, adrenaline surges don't seem to be mentioned much. I haven't seen them noted in the Canadian Consensus Criteria.
The first time I saw them listed was in the online survey Dr. Lenny Jason recently did. Before that nothing I came across
discussed them. Wonder if there's a reason they don't seem to have been focused on.

 

Heyya

I thought I wud give an update with regards to the post

It was near impossible to figure out what comes first here, the chicken or the egg?

Ive had 10-20 more episodes since the post, mostly occurring when I try to make dinner.

After i overexerted with training i really struggle with making dinner, or being upright in general.

I think i went from mild/moderate to severe ME after the period with exercise

Ever since the collapse with cramps the whole disease has felt way more neurological (mind u, I dont know how that feels but I just note that when i stand too long or when i have PEM then I get shaky, get fasciculations sometimes with stomach cramps). I guess it also might be due to energy problems (or a mix i guess), cause i have noted that when i wake up I can make breakfast and shower without almost collapsing, but when I have been up some hours there simply is not biologically possible to do what I need to do.

Im digressing a bit..

I think what has been happening is that I get adrenaline surges, which may or may not (sometimes depending on how fast I lie down or how I meet the the incoming feeling of doom) make me have a panic attack. I think this happens because the body is signalling "I CANT DO THIS" and the nervous systems answers "OK BRO GONNA SAVE U NOW AND SMASH U DOWN ON THE FLOOR". Also i could not imagine what severe ME felt like, and that has taken a lot of time. It`s also something u dont want to admit, because.. Its horrible U then get scared it can get even worse, and it can. Well what happens happens i guess

id also like to note one thing.. A lot of mild/moderate patients try graded exercise and dont get a long term worsening. This was also the case for me for a while until it wasnt. Thats the insidious nature of this disease, I really think no one should try exercise at all if they have ME. There is something with the disease process that can escalate, or cause damage.

Thanks for reading. I hope i scared someone from trying exercise in the future

 

My aunt had these, which instigated severe hear palpitations. Twice she went to hospital via ambulance, wore monitors and nothing found. ( a relief not to have underlying heart issues).
She had a private consult as NHS did not seem to be able to say her heart was ok and consultant used a monitor and Apple app to monitor heart and advised her heart itself was ok.

She has found that magnesium via injection has helped this particular symptom.

ETA this did coincide with a general worsening

 

You aunt has ME too? :/ Interesting! Yea im 99 % certain its not a heart issue but a nervous system issue ive been tested many times over and also taken ultrasound so..

 

My aunt and my daughter ( and my daughter has many of my aunts traits)

 

Sorry to hear that, that's rough.. Certainly seems to run in families so i guess there are some responsible genes

 

Thanks @Marky .
It has been a development in the last 5 years, so kind of weird .

I think the double tap theory holds good for both, so Gene's will have a role no doubt.