Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

How to Cope with Overload of Adrenalin?

Discussion in 'General ME/CFS Discussion' started by MargUK, Mar 31, 2017.

  1. MargUK

    MargUK

    Messages:
    78
    Likes:
    112
    Aberdeen, Scotland
    After a recent relapse, I am beginning to pick up the threads again and would say I was managing to live about 50% of a life with lots of pacing. If I have any appointments to go to I'll try and spend the previous day in bed (if possible) and just do very little on the day of the appointment which I always try and make in the afternoon so that I get a chance to have extra rest and eat something half-decent before I go out.

    I feel dreadful in the morning and take a good couple of hours before I start to feel human and am able to get dressed etc. I don't feel in the least bit hungry at this time and would find it very difficult to eat anything. The first time I'm eating tends to be around 12 noon or 1 o'clock(ish).

    I trained as a person-centred counsellor years ago (just working voluntarily) but left it after 3 years to do something else and in 2016 I retrained in a desperate attempt to have something I could focus on and give me back some self-worth, having realised I probably won't be able to work any more. I was so pleased to be able to manage the training and began seeing clients (just two a week) in August. However I also started a postgrad Diploma course at University (one day a week) in September of that same year which was probably stupid but you know how it goes ...... we just want to be normal.

    My relapse was at the beginning of February and I'm slowly trying to pick up the pieces again. I have deferred on the course but it's likely that I'll eventually just withdraw altogether and yesterday (Thursday) I finally started seeing clients again. Just one for now. There was a lot riding on this - it was my only connection to feeling that I can actually do something I'm good at and even if I can only manage one client a week that's okay - I'll settle for that. The client couldn't manage on the first date and had a cold last week so cancelled. That was fine but it made it quite stressful psyching myself up for the appointment each week then having the disappointment at the last minute so I imagine my body would have been pretty stressed out yesterday when I finally got there.

    I've recently been having symptoms which I'm finding quite hard to deal with. Previously they've only been apparent when I've overdone it and am about to crash and usually that seems to happen after around a couple of hours of activity of some kind. I can see the connection and know what I have to do to manage that. I was therefore distressed when, in the middle of an appointment at the JobCentre the week before last, they kicked in after only an hour and after I'd stayed in bed all of the previous day and that morning.

    The same thing happened last Friday on the way to a hair appointment. I'd been feeling absolutely fantastic that day ironically but had still kept things low-key with very little activity the day before and about half way there it all kicked in and I had to turn back. I was gutted.

    My heart starts pounding, I get really hot, feel dizzy, 'spaced', slightly disconnected, legs go wobbly - and then the adrenaline starts shooting in - and that's the one I find really difficult to cope with. My body tenses up, I get scared it'll get worse, that I'll have to say something, that I'll collapse. I find it hard to sit still and very difficult to concentrate. All very much not conducive with being a counsellor!! Yesterday I was determined to see the appointment through because it meant so much and I had 3 'episodes' during the session which made it really uncomfortable and a very long hour! By desperately concentrating on my breathing, trying not to tense up and telling myself nothing drastic will happen I got through it but of course it meant I couldn't give my full concentration to the client which wasn't fair on her.

    There was a very lovely moment though when, for about 10 minutes, it all went away and I was just 'me' again, completely 'with' the client and fully in counselling mode. That was worth all the hell.

    My question is - is there anything I can take/do to decrease the severity of that particular symptom for even just that hour to make it less frightening? I feel if I can find a way of coping with these symptoms and dispel some of the fear then it stops me trying to avoid anything stressful and better able to manage it. I'm starting to dread going out at all in case it all starts up.

    On hand in the house at the moment:


    Beta blocker (Propanalol) - not found this does anything and have tried different doses and different kinds (e.g. slow release).
    Valerian root (Kalms) - I take 1.5 tablets every night to help me sleep and they work well but if I take any during the day they just make me sleepy not surprisingly!
    Benzo (Diazepam) - prescribed when I first became ill. I've been told I can't get any more of them and luckily I refused to take them every day as prescribed knowing that would set up an addiction so I 'stockpiled' them for when the anxiety was very severe. They worked well for that. I only have around 20 left but would be happy to take a couple on a Thursday if I thought that would help.

    I also take 0.4 mgs of Subutext (taken for an over the counter addiction to codeine tablets), 15 mgs of Mirtazapine (anti-depressant) at night and 1 tablet of Vitamin D in the morning. I recently tried doubling the dose of that last one but made myself ill so have gone back to just the one.

    I wondered if low blood sugar was playing a part but then you'd think the symptoms would be there all the time or appear more frequently? I've been grabbing a banana when I'm going out and having that when the symptoms come on or when I get an inkling they're about to appear but have no idea if it's making any difference or not. I'm convinced it's a deficiency of some kind but have only had the usual blood tests as far as I know and they all seem to be normal. I'm a bit bamboozled by the amount of information on here and feel quite clueless having not long joined the site.

    Is there any specific test I can ask the doctor to do?

    If it's a physical thing will mentally trying to calm myself down still have any effect? And can someone reassure me I won't actually keel over at any point?!

    I'm sorry the post is so long but I wanted you to have all the info to hand.
     
    Last edited: Mar 31, 2017
    Jennifer J and justy like this.
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    @MargUK - Could you please set the text color of your post back to the default? Large blocks of colored text aren't readable.
     
  3. MargUK

    MargUK

    Messages:
    78
    Likes:
    112
    Aberdeen, Scotland
    I'm so sorry @Valentjn - I'm not sure what the default is but I've changed the colour back to black. Is it ok now?
     
  4. Basilico

    Basilico Florida

    Messages:
    827
    Likes:
    1,974
    My husband has had this issue a lot. For him, most of the things that cause the excessive adrenaline issues in some way do so by triggering a vagal nerve response. Also, his MAO system is not very efficient at breaking down adrenaline (which we learned after getting his genetic testing done), so when he gets an adrenaline burst, it lasts much longer than it should.

    In terms of dealing with the adrenaline burst after it's already happened/happening, we've not found a magic bullet, but we have come up with a bag of tricks to help deal with it - he does sometimes need to use either Propanalol (which you mentioned) though Xanax works much better for him. Additionally, we've found that being in a really cold environment (like A/C full blast) seems to prevent it or reduce it pretty quickly. We learned this after one of these attacks sent him to the emergency room, but after sitting in the waiting room which was really cold from excessive A/C, he suddenly felt much better. After that, we've tried experiments with turning the A/C really high in the car or at home, and it seemed to really help.

    But probably what we try to focus on the most is preventing it from happening as much as possible by avoiding triggers. For him, there seem to be several triggers that prompt his wonky vagal nerve to trigger an adrenaline attack. His triggers are: low blood sugar, low blood pressure, and needles (so acupuncture was not really successful!).

    He is a very lean and muscular guy, athletic for most of his life and always a healthy eater, but he suddenly developed pre-diabetes (which I think is due to CFS, not a true metabolic problem). When he got really careful not to have too many carbs at once, or combine them with protein and fiber better, and to eat snacks, he stopped getting adrenaline bursts from low blood sugar.

    Recently, he resumed an off-and-on problem of waking up at like 3am/4am and not being able to go back to sleep (which previously had been combined with adrenaline attacks). When he started eating a good fatty/protein snack right before bed, this stopped happening. I think keeping a good check on your blood glucose would be a really good idea, and if you don't already have it, getting one of those finger-prick glucose reading machines would be helpful so that you can see what your blood sugar is doing without just having to guess. Let me know if you want a recommendation for a good, inexpensive one.

    He also had to stop weightlifting, because aside from getting some PEM, he got this weird thing where he'd lift weights and instead of his BP going up like a normal person, it would crash low and he'd get an adrenaline attack. Somehow, bicycle riding and walking don't cause this problem. So he also had to be more careful about trying to keep his BP from dropping - which sometimes would happen when he got out of bed at night to use the bathroom, so he'd either have to take a long time to transition from the bed, or just use a bedpan without sitting up (not easy!). He periodically checks his BP a lot when he's more prone to OI, and when it's low, he'll lay upside down, be really careful about transitioning to a standing position, and take licorice to try to raise his BP. I don't know if you have a BP monitor, but that would be another thing to keep an eye on, to at least see if yours is tied to fluctuations in BP.

    He still is prone to excessive adrenaline, and it's probably something he'll have to deal with for life, but after taking a really good round of Mutaflor probiotic, a majority of the crazy adrenaline attacks just eventually stopped. He credits the Mutaflor for that, and I think it was likely that the Mutaflor did have a really big impact for him. Since gut flora control neurotransmitters, that's not such a stretch.

    Also, certain supplements seem to trigger adrenaline attacks - for him, specifically P5P (B6). I don't know if you are taking any B vitamins, but if you are, you might consider testing them/suspending them to see if anything changes.

    I'm hoping there's something in all of that that could be of help to you. I know getting those attacks are truly awful - my husband says that during an attack, it feels like he's dying - it's so distressing. I hope you are able to find something that eliminates or at least makes them manageable.
     
    Last edited: Mar 31, 2017
    ryan31337 and PatJ like this.
  5. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    It probably works on a white background now, but I use the black background and it looks dark grey :p If you edit the post, select everything, and hit the "none" button for text color, or the "Tx" button in the right corner of the editing box, it should go back to the default.
     
  6. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    91
    Does he panic or does it mimic panic attack and does he get in a coma like state sort Of?
     
  7. Basilico

    Basilico Florida

    Messages:
    827
    Likes:
    1,974
    It's full on panic attack - racing heart, sweating profusely, feeling like he's going to die. I didn't realize there was a coma-like state of adrenaline, that's interesting.
     
  8. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    91
    I get this it's absolutely awful how long does it take him to recover???
     
    Last edited by a moderator: Apr 2, 2017
  9. MargUK

    MargUK

    Messages:
    78
    Likes:
    112
    Aberdeen, Scotland
    Thank you so much for this @Basilico - it's a big help! Can I ask does he take the Xanax before he thinks he might have an attack or while it's happening? That's really interesting about the cold environment - if I'm in the car when an attack happens I've noticed I invariably end up winding down the window as it does seem to help.

    I would like to try things with my diet so need to educate myself a bit more on that but I'm definitely interested in the blood sugar checking so yes, would love any recommendations you can give for decent machines. What are good examples of snacks you can have on you all the time to stave off low blood sugar? I've tried cereal bars but they don't seem to make any difference.

    Re the Mutaflor does he take that every day? What sort of dosage? I only take Vitamin D at the moment so I'm ok on the B vit front.

    Sorry for all the questions but I feel it makes sense to try and get as comfortable as I can with these attacks rather than try to avoid them because then I think I will end up basically avoiding life. I've noticed any situation which might be slightly stressful makes them worse and any situation I can't get out of easily (so for example the counselling session where I have to sit on the chair and listen for at least 50 minutes) makes them worse as well.

    I can feel the shadow of one at the moment because I have to go to the JobCentre in about an hour - it makes me nervous if I think an attack won't be 'understood' properly and knowing they're just so cynical in that place because they get people lying about all sorts all the time, it makes me feel that if I have an attack it'll be regarded as 'shamming' to get out of the appointment. I can feel myself start to panic inside which of course is ripe fodder for an attack!
     
  10. MargUK

    MargUK

    Messages:
    78
    Likes:
    112
    Aberdeen, Scotland
    It's dreadful isn't it @Johnskip? How do you cope with it? Have you found anything which works?
     
  11. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    91
    For me this adrenaline is rhe start of a crash I'm down for several days after usually when I do something like exercise earlier in day with elevated heartrate
     
  12. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    91
    I take magnesium oil on the bottoms of my feet and ride it out
     
  13. Basilico

    Basilico Florida

    Messages:
    827
    Likes:
    1,974
    When he was in a period of getting these attacks regularly, he'd take the Xanax when he felt one starting to come on. He really didn't want to be dependent on Xanax, or any drug, and has amazing willpower, so he would set limits for himself that he would not cross no matter how bad it got (in general that's 0.5mg, but during the worst of it he occasionally allowed himself 1mg, which in the grand scheme of things is probably not a high dose).


    I spent a lot of time researching various glucose monitors to figure out which were the most accurate and the best bang for the buck (the machine itself is not expensive, but what you have to focus on is how much the strips cost). We finally found the current glucose monitor which is "Bayer Contour EZ" after going through a few others, and we are very happy with this one; not only are the strips much cheaper than the previous brand we were using but it's very accurate (we tested it against a blood glucose reading he got at the hospital and it was identical).

    In terms of diet, in the beginning he was very strict, but over time we saw that his glucose control became much better and even though he is still takes certain precautions, he can be much more relaxed about how he eats now.

    So, in the beginning, he'd tried to not eat more than 30g of carbs per any one time. He was eating a lot more meat, vegetables, nuts, eggs, cheese, and the carb would be more of a small side, like 2 pieces of bread, rather than the meal being carb-based like a bowl of pasta. He also switched to eating smaller meals but eating more frequently. Instead of using sugar in his lemonade (which we make at home) he switched to stevia. In the beginning, he was testing his glucose A LOT try understand how things affected his levels, and we found that by increasing his fiber, he could eat more carbs and have better glucose control. Combining carbs with fat did not help at all. At nighttime, if he wanted to get through the night without waking up, he'd eat something high protein/fat but low carb, like some leftovers from dinner (stew) or some ham with maybe 1 piece of bread and nuts, or even a glass of full fat milk. Yogurt is another excellent snack, the unflavored kind has basically zero sugar, it's great for stabilizing blood sugar. Beef jerky and nuts and olives are our main grab-and-go snacks now.

    Also, doing some kind of light exercise (like walking for 20 minutes) after eating has made a huge improvement in glucose control. If he checks his glucose after a meal and it's too high, if we walk for 20 minutes and then he tests it again, it's usually perfect. However, he's not always able to walk 20 minutes, especially if he's feeling crappy (and his glucose is more likely to be erratic when he's feeling worse or hasn't slept). During these times, he takes 1-3 teaspoons of apple cider vinegar mixed with water just before he eats and his glucose control is significantly better (ACV slows the digestion of carbs so glucose doesn't spike the same way).

    Also, his glucose is noticeably erratic if he hasn't slept well the night before.

    He went from checking his glucose probably 10x/day to now only checking it once it awhile. In general, his glucose control is fairly decent but whenever he's in a flare up/feeling sick/hasn't slept, then he has to be much more careful because that's when it gets weird.


    He took 4 Mutaflor pills per day for a year. The standard dosage is to take 4 per day for about 2 months. It was after about 1-2 months when he noticed that the panic atttacks had greatly subsided to the point of almost not happening anymore. 2 months might have been plenty of time, but he decided to do a full year because he also had pretty severe IBS-D before which was greatly helped by the Mutaflor, and he wanted to give it as much of a chance of colonizing as possible.

    BTW, I've heard of many people on this board having really severe reactions to Vitamin D; I don't remember now which members, but if you do a search on that, I bet you can find several threads. How long have you been taking Vitamin D compared to when these attacks started?


    I don't mind all the questions at all. Having been by someone's side who has gone through this, I can greatly sympathize, and the more you can talk about it and try to figure out the cause, the better you'll be. While there is no doubt that for my husband, the cause was something physical, psychological factors could greatly worsen/increase an attack, especially as you described the anxiety that you now have about returning to a situation where there is no easy out if one comes on. It might not prevent an attack, but if you can focus on trying to calm yourself before going into the meeting, maybe you can avoid triggering an extra attack from the anxiety (I know, easier said than done!)
     
    Last edited: Apr 3, 2017
    ryan31337 likes this.
  14. Basilico

    Basilico Florida

    Messages:
    827
    Likes:
    1,974
    During the worst period of time, for several months he was having multiple attacks per day (each one lasting 1-3 hours), and sometimes he'd pretty much have to take Xanax every 4 hours for the whole day because as soon as the medicine started to wear off, another attack would start ramping up.

    Since you mentioned it was tied to exercise sometimes, have you ever checked your blood pressure to see if there was a connection?

    Do you find that the transdermal magnesium works differently for this than oral magnesium?

    So sorry to hear you're going through this, too. This is a really rough thing to deal with.
     
    Last edited: Apr 3, 2017
  15. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    91
    I get my worse ones waking up out of a dead sleep at night where my blood pressure would spike high but my heartrate stayed quite low but I attribute it to passing the threshold of what are bodies can take on exertion I push the envelope and beyond alot only to pay dearly but pacing my life always has been very hard for me and long ago I developed a benzoyl addiction and was a nightmare to get off I know a benzoyl like xanax would help in this situation immediately but I don't want to be more tired the next day I'm tired enough!!!!! So I do everything natural now through food and supplementation only but to be honest in those episodes I think benzo are the only thing that would give you a little relief
     
  16. MargUK

    MargUK

    Messages:
    78
    Likes:
    112
    Aberdeen, Scotland
    I have tried magnesium as a supplement but it didn't appear to agree with me unfortunately:meh:
     
  17. MargUK

    MargUK

    Messages:
    78
    Likes:
    112
    Aberdeen, Scotland
    This is what confused me - previously these symptoms would herald a crash but I knew that wasn't possible when I had them after staying in bed the previous day and resting up until I had to leave for the appointment so I realised there must have been something else going on.
     
  18. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    91
    Magnesium helps us in so many ways and there is so many different types to try!!! But it's not immediate relief to episodes like we are talking about in above posts
     
  19. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    91
    Can it be anxiety?????
     
  20. MargUK

    MargUK

    Messages:
    78
    Likes:
    112
    Aberdeen, Scotland
    I feel the same - I would rather do without a benzo if at all possible. 1 mg is a very low dose yes - the ones I've got are 2 mgs and at the beginning of the illness when my anxiety was through the roof and these attacks were constant I found a 5 mg tablet would do the trick. But I would also try and ride it out as much as possible before succumbing to taking anything.

    This is really useful thanks - I'll check it out!

    I think I need to also switch to smaller meals - my pattern has tended to be nothing until lunchtime then lunch - a snack a few hours later - then tea is sometimes not until 4 hours after that so I'm probably leaving far too big a gap in between meals in general. I seem to need some sort of 'treat' to eat after tea but was sure the chocolate or crisps it tended to be was making everything worse so was running out of idea but I'll try and stick to yoghurt or even these low-fat desserts instead. And I'll definitely be trying the apple cider vinegar. It's interesting about the exercise - I would never have thought to do that - I'm always worried I'm exacerbating the situation by carrying on doing whatever I'm doing so maybe there's not so much need to panic.

    Thanks for the info on the Mutaflor - I'll get some and give that a go. I know what you mean about the Vitamin D - I've been taking one tablet for months and months now and these 'attacks' have only just started so I don't think there's any correlation there. However I did double the dose of Vitamin D a few weeks ago and after about a week realised I was feeling really rundown and crappy - I was getting ulcers and infections and just generally feeling awful. I sussed it was probably the Vit D and went back to one tablet again and definitely feel better.

    And I'm delighted to report nothing developed at the JobCentre this morning! I met my brother and his wife a couple of hours afterwards in a very busy cafe and decided to have lunch as it was nearly 12. It was a while coming and I realised it had been some time since my paltry breakfast banana so I did feel a bit panicky then but once I got the sausage and beans down me all was well!

    We chatted for ages so I've just had some Ritz crackers and am away for a nap. I think this is the mistake I make a lot of the time - I can have a nap any time between 4.30 and 6.30 which can last until 8.30 some nights before I'm getting up to eat by which time my blood sugar is probably on the floor!

    Thanks so much for your help with this - it's great to have several things to try but at least I can start eating better straight away :)
     

See more popular forum discussions.

Share This Page