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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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OI very connected to fatigue - why?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by erist, Sep 12, 2012.

  1. erist

    erist

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    I have intermittent POTS. It can be pretty extreme (heart rate jumps from 60-70 to 130-150 immediately on standing). I have noticed that without fail, the days my OI is the worst are the days my fatigue is also the worst. I also have noticed that even if I have a relatively good day OI-wise, if I have an afternoon crash and take a nap, when I get up from the nap I will always be super POTSy for at least an hour or so.

    Sodium pills have really seemed to help my POTS. It is there 30% of the time instead of 60-70% of the time now, and rarely will my heart rate spike above 130 and seems to recover quicker. However, it is still very connected to fatigue.

    My theory is that the fatigue is literally so bad that my ANS can't do what it is supposed to do, rather than the POTS causing the fatigue. I still do not why taking an afternoon nap always ALWAAYS makes POTS spike though...
     
  2. lnester7

    lnester7 Seven

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    My OI used to get worse after naps too, before I had a CPAP, I have mild sleep apnea (no snoring, or leg movements). So sleep tired me more than it helped. Have you checked for sleep disorder? Just a thought.

    I am better of the OI but fatigue has not improved.
     
  3. erist

    erist

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    No sleep apnea, no sleep disorder, other than a slight lack of deep (stage 3 and 4) sleep...
     
  4. Shell

    Shell Senior Member

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    I'm not sure what comes first the fatigue or the POTsyness. Some days when it's really bad I feel really awful, but other days when I think I'm ok I'll black out and find my pulse has hit 135 or more.
    Weirder still sometimes it hits it's usual 125 and then drops like a stone to 80ish making me feel really sick. I watched it on a pulse/SATS monitor once.
    Fatigue is a major symptom with POTS, but I've never read how the two are related other than problems with blood volume and/or it's link with ME anyway.
     
  5. erist

    erist

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    Yes, I have a wireless HR monitor for exercise that transmits to my iphone, so I can print out graphs for the unbelieving doctors (since it is intermittent and I've had both positive and negative TTT). Like look! The heart is not supposed to do that!

    Anytime I feel awful it seems the POTSyness is awful, though sometimes the POTS can be quite bad and I am still functional. Walking around all day with a HR of 120+....so yes, confusing!

    I often get spikes then drops. For example here is a picture of standing up and then just standing still - you can see a huge dip a few minutes in, then a spike, then it drops immediately when I lay back down again

    http://cl.ly/image/3k1y1u1y1P2P

    Even on the days where it is very high (150+ on standing) I tend to get at least on dramatic drop where it just plummets for 15 seconds or so

    http://cl.ly/image/090s0V1z3W2F
     
    ahimsa likes this.
  6. SOC

    SOC Senior Member

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    Have you considered low blood volume? You could try sports drinks (Electro-Mix in water is much less nasty than Gatorade) and pushing lots of fluids and see if that helps.

    I used to wake up POTsy in the morning, although not after naps as far as I remember. Drinking 0.5L (1 pint) of electrolyte drink right at bedtime and another 0.5-0.75L before I even get out of bed in the morning has helped a lot. Also, making a slower transition from horizontal to vertical can reduce POTsiness -- gives your body more time to adjust to the upright position.

    My BP and HR are much more stable with a minimum of 3L of fluids daily and extra electrolytes. I'm hoping to convince my doc to give me Florinef to increase my blood volume because there are still issues of timing if I have to keep my blood volume up just by drinking.
     
  7. erist

    erist

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    Yes, sodium/potassium tablets and lots of water (3-4L/day for me as well) have helped more than I ever could have believed, but still not "normal" and still have random bad days. Can't do sports drinks as I do sugar-free diet. I also started taking salt tablets in the AM with lots of water before getting up. I have thought about Florinef but have heard mixed things about its effects of the immune system.
     
    stefny likes this.
  8. alex3619

    alex3619 Senior Member

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    I think fatigue and OI have a two way causality. Unlike many I don't have severe OI most of the time. However when I am very exhausted my OI rises up and becomes a serious issue, causing me to pass out as often as three times a minute until I get the message. The capacity for the body to cope with OI is in part based on energy levels. If you are exhausted you are in adrenal fatigue as well - and that means that compensating mechanisms for OI might start to fail.
    Bye, Alex
     
  9. penny

    penny Senior Member

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    Not to get geeky about metrics, but those graphs are pretty cool. Would you mind sharing what monitor/app you're using?

    I definitely notice the correlation between worsened OI and fatigue, though no idea about causation. It's an interesting question though.
     
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  10. urbantravels

    urbantravels disjecta membra

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    Before I went on beta-blockers, my POTS sent my HR up to 130-140 routinely whenever I stood up. It seemed to me, apart from anything else, that you use a *lot of energy* when your heart is beating at hummingbird speed, especially if it happens for long periods or frequently throughout the day. You know, if you do anything rash like stand up occasionally.
     
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  11. stefny

    stefny

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    I'd be interested in this monitor/app as well.
     
  12. stefny

    stefny

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    sodium AND potassium? I keep reading different things about the potassium - that it must be balanced and/or that it will make the POTS/OI worse? I'm trying florinef for the 3rd time out of desperation and it's not helping much if at all. Also worried about immune system effects. Salt & water not working for me either tho and I almost had a hernia just putting on the really expensive support hose I finally broke down and bought, which also didn't seem to help and were too itchy even if they did. Mododrine - nada. Running out of ideas.
     
  13. erist

    erist

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    I laughed out loud.

    --

    I'm using a Polar H7 (uses new low energy Bluetooth) and an iPhone 4S. I believe it can connect to most new smart phones. I use a free exercise tracking app called Digitfit.

    http://www.polarusa.com/us-en/products/accessories/H7_heart_rate_sensor

    http://www.digifit.com/

    When I am better I use it to track recumbent exercise (I have a recumbent bike) a la the Levine exercise program. When I am worse I do things like stand up and watch it jump to 130-150 and then print it out and yell at my doctors.

    --

    I have heard mixed things on the potassium as well, but honestly I haven't noticed a difference. Was following Cheney's recommendations from here:

    http://www.dfwcfids.org/healing/gokhmbrw.htm

    but now I just take thermotabs which I believe have mostly sodium with a bit of K.
     
    stefny likes this.
  14. SOC

    SOC Senior Member

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    I can't do sports drinks because of the sugar, either. The exercise physiologist suggested Electro-Mix which is only very, very slightly sweetened and that with stevia, so not sweet at all.

    I haven't tried sodium/potassium tablets, yet. How much do you take -- as in how many mg each Na, K?

    My daughter had good luck with Florinef, so I'm hoping it might work for me. I was told that it's impact on the immune system is small (relative to other steroids), but that could still be too much for some of us. Now that most of my infection-type symptoms are much improved, I'm hoping I can tolerate it. We'll see what the doc says.
     
    stefny likes this.
  15. SOC

    SOC Senior Member

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    FWIW, my daughter was prescribed K-dur, an extended release potassium tablet, along with Florinef. It's a prescription med, not OTC. Florinef can make you dangerously potassium depleted (or so the doc said). Daughter did very well with it.
     
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  16. erist

    erist

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    I'm not very scientific about it. I think the tables have like 450mg of NaCl and 15mg of K. I take between 4 and 6 a day when I remember. I also put sea salt in the water I drink at night (and before I get out of bed in the morning) and drink homemade salty broths during the day. For me it doesn't seem to be a "take salt, feel better that day" thing, but over the course of a few weeks/months of increasing salt intake by a lot POTS symptoms gradually diminished (with occasional fatigue related spikes)
     
    SOC likes this.
  17. taniaaust1

    taniaaust1

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    Anyone considering taking sports drinks to try to control POTS watch that. Thou that did help my POTS, I ended up with FIVE teeth fillings and getting diagnosed with hyperinsulinemia (pre diabetes) in just over a year while on those sports drinks (before that, I'd only ever got two holes in my teeth my whole life and always look after my teeth by going to dentist yearly). Sugared sports drinks will completely ruin your teeth!! (they also eat away the enamel on your teeth so now I have not much enemal left) and the artificial sweetener ones were bad for me.

    Im postive my POTS is caused by my blood volume level and think that some days my blood volume may be a bit better then other days. So basically blood volume levels causing much of my fatigue (the not postexertional fatigue).

    Stefny.. Maybe your POTS isnt the low blood volume type. Those things are only useful for those who have low blood volume with their POTS.. .. do you get thirsty with your POTS or pee a lot? indications that there could be low blood volume? If not..consider trialing other things for your POTS then the things which are suitable for low blood volume POTS. (maybe you have more of the kind of POTS that astronaunts have instead to do with gravity and body deconditioning gee i hate that word, esp if you've been bed bound a lot). Anyway.. im just saying that POTS can be caused by different things and not all have low blood volume POTS thou "most" of us do. (there is also the hyperadrenalic kind of POTS some have.. in which a different medication is used).

    If Florinef didnt work for you the first time.. its highly unlikely to work now esp if you arent doing anything new with it.

    I also noticed that you didnt mention graded compression stockings.. those are usually used in conjuction with other treatments in boosting blood volume in POTS eg used with Florinef .. but yeah from what yo've said.. I cant see indication that you do have that form of POTS.
     
    ahimsa likes this.
  18. urbantravels

    urbantravels disjecta membra

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    If I had to hazard a guess, I don't think I have low blood volume with my POTS, especially since I don't have a speck of NMH. Keeping hydrated/electrolyted I agree is very important for all kinds of OI, but for me it doesn't seem to have the dramatic effect it has on some others. I do get more logy when I've gone too long without drinking and feel better after drinking something, but it's not a swing between feeling faint and feeling hugely better.

    The body places a very high priority on keeping your brain alive by making sure it is getting enough oxygen. If the body senses that the brain isn't getting enough oxygen, it might first send your heart rate up, and then if that isn't enough, resort to making you faint. Fainting makes you lie down and stay still; it's an autonomic response that evolved to help protect your brain from dying. Low blood volume or low blood pressure can trigger this reflex, but there are lots of other possible triggers.

    Since I have POTS but no NMH, I experience no significant drop in my blood pressure on tilt table test and don't faint, but my heart rate goes insane very quickly and stays elevated as long as I stay upright. It seems that my body is reacting *as if* my brain wasn't getting enough oxygen, even though the trigger of low blood volume/pressure is not necessarily present.

    Multiple autonomic dysfunctions are happening in ME/CFS, and it could be that different faulty signals are contributing to OI. Some people get the "too much tachycardia for too long" signal, some people get the "not enough blood pressure, get vertical NOW" signal, some get both. You can certainly have hypotension WITHOUT hypovolemia, simply because your body's mechanisms for keeping blood pressure constant are screwy.

    I think it's true that everyone with OI has to be careful with keeping hydrated etc., but NOT because all people with OI have low blood volume, or because low blood volume is the direct cause of OI. Extra fluids of course won't solve the underlying dysautonomias that cause chronic OI, but they can help reduce the symptoms - and if you're a fainter they're especially key.

    Sports drinks are gross, I'd much rather get my electrolytes from food, but i don't always eat as well as I'd like, and there are always the occasions when you need a faster-acting rescue.
     
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  19. nanonug

    nanonug Senior Member

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    If I am correct in my hypothesis (see post here) then both OI and fatigue are caused by mast cell activation. That's why they come together.
     
  20. stefny

    stefny

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    Thanks very much SOC. I'll run it by my doc. I had no idea.
     

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