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seem to crash each day around midday and i dont know why? plus symptoms etc for no reasons?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Willhm, Jul 19, 2013.

  1. Willhm

    Willhm

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    Hello,

    I seem to crash and feel so exhausted each day around midday for what seems like no reason, I was wondering if it could be blood pressure or something im eating around then (my diet is pretty samey due to stomach problems and nausea) or just it happens by chance. I hardly do anything and am housebound so i doubt i am over doing it but it is possible as i eat little and often i am constantly walking to and from the fridge etc.

    Does anything like this happen to anyone else? Also i was thinking today i am doing a lot less than i was about 2 and a half years ago, i have had me/cfs for almost 4 and a half years and i am 18. I used to go to school a bit, out with friends but now i can't even stand going in the car or leaving the house and i feel more sick and completely lack any energy, have any of you had Ups and downs over the years for what seems like no reasons?

    Thanks for reading,

    Will.
  2. Valentijn

    Valentijn Activity Level: 3

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    This sounds more like Orthostatic Intolerance than an actual PEM crash. If it's not hitting til the middle of the day, then Neurally Mediated Hypotension (NMH) seems more likely than POTS, which would hit as soon as you stand up.

    With NMH, blood pressure and/or pulse pressure can drop after you've been upright too long - even just from sitting up. When this happens, there's probably not quite enough oxygen getting to the brain for a while. Sitting with your feet up can help a lot, as well as laying down periodically if you start to feel like you're struggling a bit. A blood pressure monitor should be able to pick it up, but might give a lot of error messages when things are bad, due to your pulse getting faint.

    There are treatments for it, which can make a big difference for being able to stay upright all day and think clearly. It can be diagnosed with a special type of Tilt Table Test. So since it's testable and treatable, it might be a good idea to talk to your doctor about looking into it.
    ahimsa likes this.
  3. jeffrez

    jeffrez Senior Member

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    Sounds like a natural cortisol rhythm, which goes down in the afternoon causing a "dip" even in non-CFSers (hence the "siesta" concept and practice, which corporate America has abolished).
    rosie26 and Lou like this.
  4. Willhm

    Willhm

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    I looked up POTS and found this after the ME asscotiation website directed me to it.

    http://www.dwp.gov.uk/publications/...onditions/postural-tachycardia-syndrome.shtml

    It sounds a lot like what I am experiencing and I will certainly follow it up and research it more. I can't lay down due to acid reflux and other gastrointestinal issues, is there anything else I can, I am now sitting with my feet up to see if it helps!

    I don't think it is a natural dip as I feel horrendous and have posted on another thread that after a nap I feel even worse, just horrendous. But I will look into it thank you.
  5. Willhm

    Willhm

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    But is difficult to know because like you said it isn't necessarily brought on the second I stand up, it can hit while sitting down, but could it till be POTS even if I am sitting down? Because I not seem to have it first thing in the morning.
  6. alwayshopeful

    alwayshopeful

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    It could be your cortisol. It usually drops midday, but yours could be dropping too far. You should have your cortisol levels checked with the 4xday saliva test. Digestive enzymes completely turned around my sons acid and gastro problems. There is also a product called gastromycin that works well.
    jeffrez likes this.
  7. snowathlete

    snowathlete

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    Hi Will, sorry you're getting this. I used to get a big dip around 3pm. Never knew why but it was consistent. Not related to posture for me. Felt a lot like PEM but would happen regardless of activity. Now it's far more irregular.
  8. Willhm

    Willhm

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    I will look into that thanks. Is it something you can do at home or can you do it on the NHS? (Sorry I don't know if your in the UK or elsewhere). And thank you I will certainly look for some digestive enzymes, I need some without certain ingredients as I am on the SCD diet which has helped my nausea and GI problems a bit too, but I think a company called biocare may sell some.

    Thanks
  9. Willhm

    Willhm

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    Thanks, I am glad to hear it is not happening so regularly for you now but hopefully I can try and manage it a bit better by following up with some of the things already suggested.
  10. SOC

    SOC Back to work (easy, part-time work)

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    I used to get extremely fatigued by mid-day. Most days I had to lay down and nap or rest most of the afternoon in order to be upright (in a recliner) in the evening to socialize with my family. What changed that totally for me was dealing with my POTS -- which I thought for years I didn't have because I passed a simple TTT and didn't get faint or dizzy when I stood up. Not a single doc in 8+ years grasped the significance of my tachycardia until Dr Rey started working on my POTS with my cardiologist. My docs believe that the root of my POTS is that I'm about ordinarily about 20% low in blood volume. :eek:

    The docs and I fiddled around with treatments -- bedtime/morning fluid loading, large volumes of electrolyte fluid during the day, Florinef, and verapamil -- until all of a sudden we got the combination right. Almost overnight I was several hundred percent more functional. The individual treatments alone didn't help that much, the right combination at less than the optimal dosage was a small help, but the right combo with the right dosages was like a switch. It took about a year tweaking treatments and dosages to find the right one for me, but when we found it --- wow, what a difference!

    For me, the right combo is to chug 500-750 ml of electrolyte water with 40 mg of verapamil right at bedtime, another 500-750 ml of electrolyte water with 0.2 mg of Florinef and 40 mg of verapamil before getting out of bed in the morning. I take another 0.05 mg of Florinef at lunchtime and another 40 mg of verapamil in the middle of my day, which is around 3 or 4 in the afternoon. I also need to keep up with the electrolyte fluid during the day for a total of 2.5 - 3 liters in 24 hours It's a fussy program, admittedly, but it's what it takes to keep me up, on my feet, and active all day, so it's well worth the effort. Of course, just because this protocol works for me, doesn't mean it will work for anyone else. We know how this illness goes in that regard. :rolleyes: Still, it's worth trying to sort out a POTS treatment that works, just remember it might take time to find exactly the right combo.
    ahimsa and rosie26 like this.
  11. Valentijn

    Valentijn Activity Level: 3

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    That's why NMH is more likely. POTS should be pretty obvious immediately upon standing. NMH can sneak up on you.

    POTS is better well-known, and a lot of time people say "POTS" even when they're talking about NMH symptoms.
    ahimsa likes this.
  12. Lou

    Lou Senior Member

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    Will,

    I had acid reflux about ten years ago. What cured it and has kept it away all this time is the following:

    One teaspoon of organic apple cider vinegar in 4 oz. of water on empty stomach ten minutes before meal.

    Good luck.
  13. SOC

    SOC Back to work (easy, part-time work)

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    True. I'm told I have POTS because of the tachycardia, but at the same time, I don't have the obvious symptoms immediately upon standing. My symptoms take longer to show up and are not as acute as classical POTS. I think docs (and the rest of us) can be pretty sloppy with the usage of the terms POTS and NMH. What is probably true is that there are a lot more variations in the area of autonomic problems that are either currently unknown/unnamed or which the average GP/cardio doesn't want to mess with. Slap a simple label on it, treat it (or dismiss it) and move on. :rolleyes:
    ahimsa and Valentijn like this.
  14. Willhm

    Willhm

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    Thank you for the tip Lou.
  15. Willhm

    Willhm

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    How do you find is the best way to manage it with the exception of medication?
  16. biophile

    biophile Places I'd rather be.

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    Depending on illness severity, merely being awake can be draining too.
    justy and Valentijn like this.
  17. Willhm

    Willhm

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    That's very true, although I have only met a couple of sufferers I have read about some people who have a much harder time of it and I'm sure there are many people of this forum who feel that way as well. We just need to try and manage things as well as we can.
  18. SOC

    SOC Back to work (easy, part-time work)

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    First, we tried 3 liters of electrolyte drink spread out over the day. That didn't help much.

    Second, we adjusted to 750 ml of electrolyte drink immediately before bed and another 750 ml as soon as I woke up. I still needed to drink 3 liters total in the day, we just adjusted the timing. This helped some -- probably because my blood volume wasn't as low in the morning with this program -- but it wasn't a huge improvement.

    My docs also suggested staying in bed, sitting up and drinking my electrolyte drink, until my BP and HR stabilized. For me that was about 45-60 mins. It was a small help -- I did feel less tired and more alert if I waited until my body was adjusted to being upright before I got out of bed.

    I worked with the electrolyte-fluid-only program for about 9 months, trying to adjust amount and timing to get the most out of it, but we finally decided to try the meds, which did make a big difference. We tried the verapamil (for tachycardia) first, but it didn't help much. My cardio tried stopping the verapamil and starting Florinef (to increase blood volume). The Florinef helped a lot, but it wasn't until we added back the verapamil that I made a huge improvement.

    It's certainly worth trying to manage low blood volume without meds, but I'm not sure we can reduce the symptoms in any big way without them.
    ahimsa likes this.
  19. Willhm

    Willhm

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    It may just be coincidence but as per what is says on the website suggesting help with POTS, as I can't really lie down, when I have been sitting, which is most of the day, almost all of it actually, I have been doing so with my feet up, so I am sort of a right angle (but moving my back forward or back a bit to whatever is more comfortable) and it has seemed to have made a noticeable difference. Like I said I spend practically all day just sitting as I am at home but I definitely suggest trying this out for those who seem to crash for little reason each day.

    I am not saying I necessarily have POTS but the advice for it definitely has helped.
    ahimsa and Valentijn like this.
  20. physicsstudent13

    physicsstudent13 Senior Member

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    do adrenal glandular, coq10, atp, d ribose help? I'm exhausted even on this new asv machine and still have brain fog/tiredness around 5pm. I had pm cortisol of 2.4, endo said it was the lowest he's seen and he did nothing

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