Running Out Of Adrenaline?

[hensor]

Hi,

I've done a search and looked at lots of adrenaline reference, but this is different.

When I have something important to do - as in that I have decided needs doing, I will often be 'OK-ish' while focusing on that one thing so long as I keep going. Then once I am in a 'safe environment' again (like home) I crash. Go like complete jelly, slurr my speach, can't think of words let alone sentances, loose coordination out of breath etc. etc. If I then do another 'important/focused/intense' thing I can 'run off adrenaline' to do it...then crash afterwards. If I haven't quite recovered from the previous crash my crash will be further down and take longer to recover from. If I keep going through this cycle it is like I eventually completely run out of energy and I end up zoned out in bed and something could explode infront of me and I wouldn't care. Then it takes me months to pick up again.

I don't know what level of symptoms I actually have during the 'important' patch because I am quite good at ignoring symptoms (years of being told I was fine and believing it, comnined with brain fog)

For example:

Last wednesday I had a meeting with my bosses. (I am currently off sick, will have to leave and am looking to sue because I am heat intolerant and they knew it, and moved me and my team into an office they knew could not be kept cool enough.) Managers very supportive of me and take my side, it was still pretty intense - and important. I focussed and did OK although at one point my boss did turn round and spray me with my water spray telling me I was over heating - Yes, this is agreed acceptable behaviour - which probably meant I had symptoms that they could see even though I wasn't registering them.

I drove home OK. Then crashed on the sofa for the evening feeling completely washed out. could still talk basically though.

Thursday I had a hospital appointment, and then had to drive somewhere for another meeting in the afternoon. I did OK while out, although I noticed my speech and coherence was getting worse. (I use a wheelchair out and about, so I don't notice leg-weakness, balance problems etc.)

Friday and saturday I spent doing nothing but watch TV. I had to crawl everywhere and completed about 3 sentances all day - relied heavily on hand signals and key words. I also noticed that my chest got stupidly tight when I did anything upright, and my legs and arms kept 'switching off', light headed, no concentration, brain fog etc. and that my heart rate seemed to go pretty fast at times.

It seems wierd. It is almost like I can push through the 'trigger' event, then crash when the very large energy bill is presented shortly afterwards.

Does anyone know what I mean? Is this PoTS related? any tips?

[futurehope]

I'm no doctor so take what I am saying with a grain of salt.

You need to have your adrenal hormone output tested. Maybe you need supplementation, especially since you are crashing after stressors? Your reaction to stressors is telling me you do not have enough reserves to keep pushing like this. You might wind up in a crisis that your body cannot handle.

[hensor]

You might wind up in a crisis that your body cannot handle.

You mean like collapsing completely and spending a week kinda semi concious with my carer worrying that I might go into a coma? then the next 2 months having to build up mega slow in order to not go back to square 1?

Who checks adrenal hormones? Would it be the autonomic peeps (I have an appt in July) or my GP?

[lieze]

You might look at an adrenal insufficiency support group?

Read a little even throw out your situation and see if anyone can relate.

I peaked in there at mdjunction but it didn't fit my symptoms.

There is a really intelligent guy (seems to be) named Bob and I think he's from the UK.

You could even pm him with your symptoms and ask him if he thinks this may be what you are experiencing. It's free to join and he might be able to tell you exactly what steps to take to get this checked out.

[lieze]

Here's a link for you.

http://www.mdjunction.com/adrenal-insufficiency

[futurehope]

It's actually not a joke, and endocrinology is the specialty that diagnoses and treats glandular problems, as in adrenals. Let us know if you decide to investigate further.

[hensor]

Future hope - I wasn't joking either. What I wrote has happened to me in September and I'm still not properly 'recovered'. Having 'been there done that' I am realising that it isn't 'normal' and I need to get a handle on it. Not least because when I am 'focused' I don't recognise the symptoms or register that I am 'over-doing'.

I actually did this on my Tilt Table tests too - I was talking relatively coherently with a heart rate of 170ish, saying I was 'OK', then they lay me down again and I relaxed and was completely unable to talk. Just mumble. In hind sight I had felt completely rotten and only part alive at 170bpm, but didn't have the mental capacity to recognise it. I was functioning because I had to. Complicated by the fact that I am scared to be seen as exagerating my symptoms because that was what I was always accused of as a child. When I could relax again and the adrenaline was no longer 'needed' I couldn't talk. As if I needed the 'fight or flight' reaction to make me able to do the basics.

Also when I am doing the 'important' thing, it is like all non-essentials shut down. So if I am talking I have no coordination, if the important thing is walking - I cannot talk. If the important thing is talking about one subject - I can't switch to thinking rationally about another subject. It is like I can only run one system. Like a standard 'broadband' mind and body has switched to 'dial up'.

I clearly have adrenaline - because it is only when I keep pushing that I completely collapse. And because I can for short times do 'more' than I can normally.

I had read quite a few of the adrenal insufficiency on here and it seemed a little different, but I will go and look at the link info.

And I have definitely decided to raise it with my GP and see what she thinks.

[spaceorca]

My son's experience is just like this, HEnsor. He is badly affected by POTS, other autonomic problems (like you, he's completely heat intolerant), Crohn's disease, and several endocrine problems. He can focus himself to do something active, but then crashes hugely afterwards. Your description sounds just like what I have been seeing for the last 6-8 years!

Now here's an interesting part: My son has already been diagnosed with adrenal insufficiency--he doesn't make sufficient cortisol or aldosterone (the two main hormones supplied by the adrenals). He takes oral medication (cortef and florinef) to replace those missing hormones. Those replacements give him some relief: he was bed ridden, unable even to make these pushes, before the adrenal diagnosis. But he still has the same pattern you describe here. I don't know if his body fails to process these hormones properly, if super pushes of adrenalin can temporarily overcome the dysautonomia, or what it is.

If you or others find out more about this, I would be very interested!

[Birdlady]

What you are describing sounds like it could be low cortisol for sure. I'd try to find a doctor to do a low dose ACTH stim test and then seek treatment if you fail.

I personally have found this website/forum invaluable!

http://www.addisonssupport.com/

Addison's/Adrenal insufficiency can be an underlying cause for POTS. If you find that's what you have, then maybe the "POTS" will go away with treatment. Unfortunately I wasn't that lucky!

[Noreen]

Hi,

I've done a search and looked at lots of adrenaline reference, but this is different.

When I have something important to do - as in that I have decided needs doing, I will often be 'OK-ish' while focusing on that one thing so long as I keep going. Then once I am in a 'safe environment' again (like home) I crash. Go like complete jelly, slurr my speach, can't think of words let alone sentances, loose coordination out of breath etc. etc.

I don't know what level of symptoms I actually have during the 'important' patch because I am quite good at ignoring symptoms (years of being told I was fine and believing it, comnined with brain fog)

It seems wierd. It is almost like I can push through the 'trigger' event, then crash when the very large energy bill is presented shortly afterwards.

Does anyone know what I mean? Is this PoTS related? any tips?

You've almost described me to a T.

Thanks for posting.

[ramakentesh]

There are two reasons this happens in POTS. One of these is theoretical.

Firstly, when there is a circulatory disregulation in the vascular system that reduces blood flow to the brain, the body uses epinephrine in a poor attempt to increase blood pressure and blood flow to the brain. Unfortunately in some POTS patients this eventually has a counteractive effect of mnaking you feel jumpy, urinate more and when your daily epinephrine/adrenaline levels deplete you tend to crash.

However, Dr Blair Grubb is of the opinion that in hyper patients they have faulty norepinephrine reuptake - cycling from too much norepinephrine and feeling jumpy and jittery to running out when the receptor is totally overstimulated and exhausted when they crash.

In many POTS patients our beta 2 receptors dont work well, so when our body shoots of adrenaline to assist in blood flow it actually makes us even more vasoconstricted.

As an example if I drink four coffees Ill crash earlier than if I dont. Coffee stimulates release of epinephrine and Norepinephrine and both - once released - stimulate more and more to be released until - in theory - the receptor is exhausted and I crash.

Interestingly, the best way to combat this type of exhaustive feeling is to wind down - try valerian, beta blockers or even a drink of alcohol if you can tolerate it.

Get your adrenals checked but dont be surprised if they come back normal - epinephrine is adrenal released but norepinephrine is 90% released by receptors in the sympathetic nervous system so plasma levels may be meaningless.

[hensor]

Thanks everyone. Your posts are really appreciated and it is nice to know that I am not alone

I know my pots is at least in part secondary to EDS3, but that doesn't mean I don't have adrenaline issues too. For some reason I am not good at accepting that some things may not be 'cos I'm bendy' - probably because I like to think that I'm healthy

You have all given me some food for thought, but most importantly the confidence to talk to a Dr about it. I'm not imagining it. (When I last mentioned this to a dr 'It's like I've run out of adrenaline' he told me not to be ridiculous and diagnosed psychosomatic-ness. Sigh.)

Even if all my tests come back negative, that explanation of not enough blood to the brain and the body trying to compensate with epinephrine sounds like it may be me. It is easier to work out how to best help yourself when you have some idea of what is going on

Thanks again, - I'll keep you posted,

Hannah

[abbriggs]

ramakentesh: Is this the reason why Dr. Grubb places some people on SNRI's to help even it all out?

[Power Lifter]

Thanks everyone. Your posts are really appreciated and it is nice to know that I am not alone

I know my pots is at least in part secondary to EDS3, but that doesn't mean I don't have adrenaline issues too. For some reason I am not good at accepting that some things may not be 'cos I'm bendy' - probably because I like to think that I'm healthy

You have all given me some food for thought, but most importantly the confidence to talk to a Dr about it. I'm not imagining it. (When I last mentioned this to a dr 'It's like I've run out of adrenaline' he told me not to be ridiculous and diagnosed psychosomatic-ness. Sigh.)

Even if all my tests come back negative, that explanation of not enough blood to the brain and the body trying to compensate with epinephrine sounds like it may be me. It is easier to work out how to best help yourself when you have some idea of what is going on

Thanks again, - I'll keep you posted,

Hannah

Hannah,

My symptoms are similar to yours. I often have trouble walking and use a cane sometimes. John Hopkins suggested I get physical therapy to help. At the end of about my 3rd week of therapy I had what I call a "spell". I had slurred speech, foggy brain, dizzy and trouble walking. For the most part this cleared up after 30 minutes, but I had speech trouble for about 3 more days and trouble getting around. In therapy I cannot walk more than 4-5 minutes before I start shuffling my feet and need to stop. I usually always have a bad headache and feel nauseous when this happens. Normally my spells cause me to feel like I lost all of my strength and I am "out of it" for 20-30 minutes. These occur more often when I over do it. Air travel and long trips in the car also cause these spells. I have never fainted.

Guy

[ramakentesh]

Its a strange thing - when you take SNRIs you reduce sympathetic outflow into the body - but in hyperpatients its believed that the opposite is occuring from norepinephrine transporter deficiency.

[firewatcher]

My doc at Vandy said for me to absolutely NOT take a SNRI. My ANS testing indicated a hypertensive response, and put me into the Hyperadrenergic category (if there is one.) My endo wanted me on Pristiq and Vandy was very emphatic that I NOT take it. If I wanted a SSRI that would be OK, but I just overreact to norepinephrine in all the "classic" ways. I don't go hypotensive on upright, I go hypertensive. By looking at your ANS testing results, it will suggest to the doc whether or not a SNRI would help or hurt. I was put in the hurt category.

[ramakentesh]

Yeah Vandy say that on the basis that its possible that an SNRI will worsen a perceived deficiency in NET function. However, if NET deficiency was not present or perhaps even if it was, an SNRI would decrease symopathetic drive and reduce sensitivity to norepinephrine. I hear Dr Grubb uses SNRI in select hyper patients.

[hensor]

I see my GP tomorrow. Having read about jelly legs sometimes being due to adrenal insufficiency I think it may well be the answer. I still have spaghetti for legs, despite having a not-too-bad PoTS day, and having done very little yesterday - and for the last 5 days. Starting to get a little concerned as with my EDS, exercise is quite literally what holds me together - and it is now nearly a week since I was able to do my physiotherapy. (OK, I'm a little obsessive when it comes to physio but I'm allowed to be!)

I really really really don't want any more diagnoses or medical tests though

[ramakentesh]

I think adrenal deficiency is a whole different kettle of fish.

[hensor]

I saw my GP and she has ordered a blood test, but only a normal one but including asking them to measure cortisol levels. I know this isn't an ideal test for reasons others have said, but it is a step in the right direction. hopefully. Her advice was to keep doing as much as I can and not be scared of doing too much.

My problem is that the only way I've found out what is too much is to crash. Which then leaves me with lower tolerances than before. So I try and find where my new boudries are - and crash again..etc.. So logic says it isn't a good to keep crashing - not least because if I don't do my physio for even a few days I really notice it with my EDS.

She also suggested that maybe my symptoms are cos I am not keeping myself busy enough with things I enjoy (I used to really enjoy my job which I am having to leave cos of discrimination) - which isn't the case, cos I am doing stuff with the governing body for my profession, some voluntary stuff for my church, some math tutoring, and have recently taken up sailing which is fabulous fun. And I enjoy life. I don't feel weak cos I'm depressed, although I do feel a little depressed because my legs keep going to Jelly-stage, which experience tells me is very close to complete collapse and I don't know what to do about it

Does anyone have any idea how balance the crashing and life?

I'm a natural over-doer who doesn't believe half my symptoms - as in if I say my legs are too wobbly to walk then it isn't that I think they are, but that I have tried repeatedly, consistently failed, tried one more time because I might have imagined it. And now it is half an hour since I last tried, so it might be different now and I'll give it another go.

I am familiar with the need to 'pace' but I'm not sure how to do it when I have no idea where my limits are :?

[PotsMom]

My son's experience is just like this, HEnsor. He is badly affected by POTS, other autonomic problems (like you, he's completely heat intolerant), Crohn's disease, and several endocrine problems. He can focus himself to do something active, but then crashes hugely afterwards. Your description sounds just like what I have been seeing for the last 6-8 years!

Now here's an interesting part: My son has already been diagnosed with adrenal insufficiency--he doesn't make sufficient cortisol or aldosterone (the two main hormones supplied by the adrenals). He takes oral medication (cortef and florinef) to replace those missing hormones. Those replacements give him some relief: he was bed ridden, unable even to make these pushes, before the adrenal diagnosis. But he still has the same pattern you describe here. I don't know if his body fails to process these hormones properly, if super pushes of adrenalin can temporarily overcome the dysautonomia, or what it is.

If you or others find out more about this, I would be very interested!

We see the same trend with my son. I feel there is some kind of adrenaline surge that allows this kind of thing and then once it's over there's the crash. It is very frustrating as there is no way to explain this to others who don't deal with it on a daily basis as a patient or caregiver, and this often includes family members as well. Being able to do that thing one really wants to do is great, and I'm always very happy to see it. At the same frustrating time it gives others who don't understand the opportunity to mistakenly perceive that actually the patient can do what they really want to do, so how real is this?!! It tears me up to see my son suffer so and at the same time to have to deal with so much disbelief!!! The human body in general and this disorder specifically are both so complicated and it will likely be a long time, if ever, before all these puzzles will be solved. Meanwhile patients have to deal not only with the illness itself but a huge lack of belief from so many.

[spaceorca]

Yes, exactly! When someone with a well known illness is able to make an extra effort to attend a family event or do something else, everyone applauds that person for their fortitude and effort. With a disease like POTS, people wonder if you're really sick.

Two things seem to have helped over the years. One is that all of our family members have by now seen my son at his flat-out sickest, and they have a better sense of what he's fighting. The other is that I often describe POTS by saying that it's like getting off the dizziest, most nauseating ride at an amusement park--but all the time. A really fast-spinning ride can overwhelm the autonomic system for a healthy person; just getting up from a chair has that effect for someone with POTS.

It's really interesting, though, that so many of you have seen the same adrenaline surge/crash cycles. One of the most helpful things for all of us is sharing experiences so we know that we're not alone in this. Thanks!

[cordila]

Does anyone have any idea how balance the crashing and life?

I am familiar with the need to 'pace' but I'm not sure how to do it when I have no idea where my limits are :?

Boy do I hear you on this! I, too, can make it though most any 'challenge' event but my crashes afterward are profound. I, too, have had to crawl to the bathroom and have not left my bed for weeks at a time. I did have an ACTH stimulation test which I passed but then crashed thereafter for 2 weeks. I followed up with the endo but since I made it through the test OK he had no idea (and was no interested in finding out) why I crashed. Same thing happened after the Tilt Table Test. I went to 70/40 BP 130 in 4 minutes but after they put me back and filled me up with fluids I still wasn't OK...for days! The other interesting similarity is that I have been placed on SSRI's and SNRI's in the past which only wildly exaserbate my symptoms. I have a dx of dysautonomia and a 'highly likely' dx of mitochondrial myopathy for Dr. Fran Kendall, one of the few mito experts in the nation. I speak with her tomorrow regarding new mtDNA testing which does not involve muscle biopsy (invasive surgery is not on my list of things I withstand with grace).

To your question of balancing crashing and life and understanding your limits - I can simply reach right out to you and say PREACH! I struggle with the same thing. My boyfriend seems to be much better at monitoring and measuring my energy than I am. We established a new goal in our house that I maintain 50% and greater energy level. 100% is a fantastic day and 1% is an all-out-in-bed-lights-out crash. Having that goal does help me filter activities with 'is this worth the energy expenditure' and 'is it possible that doing X will lead to a below 50% level'? But ultimately, I mostly continue to fail at this quest. I do not know where my limits are. What one day I am able to withstand with ease, the very next day will put me out for a week. I try to listen to my body first thing in the morning. I find this is the time of day where I can tell if it's going to be a 'good day' or a 'bad day' or an 'ok day'. Based on the day grade, I can schedule my activities accordingly - even if that activity is folding laundry and that's it.

Now the larger question (that I struggle with too) is how to re-define yourself. If you've defined yourself as an over-doer or overachiever and someone who doesn't believe half your symptoms (or ignores them - as I often do) then part of what you're struggling with is your very definition of self. I can speak for myself and say in my pre-illness life, I saw myself as this active, on-the-move, go-getter and when my body pushed pause on my life then I had to come face-to-face with the very definition of ME. If I was no longer that person, who was I? And moreover, what if I LIKED who I was before? Could I still try to be that person?

I make plans in accordance with the former me, yet 99.99% having to cancel because the 'new' me is my today reality and I struggle with how others see me because of this. And of course it also impacts how I see myself. You know who I feel like? I feel like that irritating person who lived in New York City and moved to Nowhere's Ville Idaho, and ALL THEY CAN TALK ABOUT is New York City. The former 'me' is my personal New York City. I used to do this, I used to do that...but that not only makes it really hard to accept who I am today, it also keeps people at a distance. If I don't allow people to know and experience who I am today, if I'm constantly reminding them (or telling them stories) about who I was, then they can't get close to me because I won't get close to myself.

I would say I am no longer in denial that something profound and possibly unchanging has and is happening to my body. But I'm also a far cry from acceptance.

I don't want to be this person that identifies with my illness, symptoms, limitations. I want to be a person that identifies with what I can do. Unfortunately, what used to be on my 'can do' list has changed. But that just means I have to fill it up with other things.

xxWaterbaby

[ramakentesh]

My crashs and exertion arent necessarily linked - sometimes I can get away with all sorts of stuff, other times i cant get away with much. It amazes me how a whole week i can feel relatively well and then i have a concert or something coming up and on the day I feel like im going to fall asleep at any moment.

[erik]

Although I can certainly reach "exhaustion" at times... I'm afraid my trend is like Rama. Crashes not usually correlated with prior activity levels. I expect in many/most folks they are related and people should pace themselves. After years & years of trying various approaches however, I still find myself rather "random"... except for the obvious triggers like dehydration, severe stress, etc.

P.S. In my "road to diagnosis"... my first big suspect based on symptoms was Adrenal Insufficiency. To this day, I still don't know how that is tested for... and it seems that it only "half-exists" in medical world (as opposed to Addison's which is extreme form).