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Does POTS cause crashes?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Jemima37, May 22, 2017.

  1. Jemima37

    Jemima37 Senior Member

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    ive had it suggested by a few on here I could be dealing with PoTS. Looking into it and doing the home test it seems very likely. I'm just wondering can it cause crash days? My reason for asking is today I woke up feeling extremely weak and floaty on walking, very fast heart walking around, struggling to walk around and a general woozy feeling. If I've walked around today it acaused severe panic.

    These are what I call my severe crashes but I don't think they match cfs because I don't feel tired in head and eyes? I do have crashes like that that can last weeks wheere I feel heavy and fatigued.

    I just went downstairs to make a drink and I felt like my feet were kind of full of floaty and bouncy? I felt I couldn't stand up as I felt I was bouncing and floaty in legs and weird feeling in my feet like they can't stand on the ground. My head feels all woozy swimmy too. I've had these crashes many times and they do feel different to fatigue crashes. It's like I can't walk about due to how floaty and bouncy I feel in my legs and feet and swimmy head. So hard to put into words.

    Before bed last night I did feel weak in my legs and an intolerance to walking about as I felt shaky and weak in my legs. I did go to the park with my daughter before dinner last night as I'd not been out for 2 weekends due to fatigue. I'd had a busy day baking, folding washing and cooking as it was my first day in weeks I felt less fatigued so yes maybe I did overdo it going out but today I don't feel tired in head and eyes it's just the horrible crashes I get where I feel weak, floaty, get bad anxiety if I walk about and just can't stand up as heart races so I have to do nothing but rest an d that's hard with 3 children and no suppprt until hubby gets home.

    I've just been worrying all day what causes these type of crashes as they feel different to the ones where I feel tired in head and eyes and body weakness.

    Can anyone relate?

    Julie
     
    Last edited: May 22, 2017
    Luther Blissett likes this.
  2. halcyon

    halcyon Senior Member

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    This is really complicated, but the short answer I think is yes, but it depends on what is meant by "crash".

    There is a study that I can't find right now, but it showed that patients with POTS can experience post-exertional fatigue. Anecdotally, from spending time on numerous dysautonomia groups online, many POTS patients will describe being debilitated and bedbound for days or weeks following overexertion. The problem is we don't know how many of these people might also have ME and not even know it.

    This cuts to the heart of the matter, which is vague diagnostic criteria and use of imprecise language ("crash", "fatigue", "tired", "malaise", etc.). I would recommend that you get full battery autonomic testing, because at least with POTS/dysautonomia you can be objectively diagnosed. It doesn't mean that it isn't secondary to ME, but it's at least something you can be sure about having or not having once you've been objectively tested.

    In my opinion, the effects that distinguish ME are rapid and excessive muscle weakness following trivial exertion, and concomitant onset of flu-like symptoms in the hours or days following exertion, specifically fever, headache, photophobia, sore throat/lymph nodes, flu-like malaise. Basically, if you feel like you're getting sick with the flu following exertion, that is highly consistent with ME. If you are feeling fatigued, tired, weak, or debilitated following exertion, that could be consistent with any number of chronic diseases and is not specific enough to make a diagnosis.
     
  3. Jemima37

    Jemima37 Senior Member

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    Thank you for your reply.

    My symptoms are the fatigue, weak burning thighs and weakness, sometimes I feel heavy all over but weak, dizzy, woozy head, a chronic fatigue daily.... I don't get raised glands or flu symptoms just the crippling fatigue and weAkness type crashes. They knock me off my feet and make me feel sick. I struggle to even walk around on days when I crash that bad.

    I'm currently changing gp and hoping after 18 months to get some answers.

    Thank you
    Julie
     
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  4. Rossy191276

    Rossy191276

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    Hi Julie... For me I believe it is the ME that cause the crashes, but increases chance of crashing because increased heart rate uses more energy...(don't know if that makes sense).. Leg weakness to point of being unable to walk (currently bed bound for 2 months) is a huge one for me as well...I think its important to also realise that in quite a big subset of ME patients crashes come with a terrible almost indescribable feeling but not actual flu symptoms (I am someone that stopped getting colds/flus when I got sick with ME
     
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  5. Jemima37

    Jemima37 Senior Member

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    Thanks Rossy

    This is why I worry it's not cfs for me as I don't get any swollen glands or flu aches. I just get daily chronic fatigue and weakness feelings and then I get more serious fatigue days which I call the crashes. Where I feel weak all over and sometimes heavy, struggle to walk around and an intolerance to standing as I feel so woozy and faint, I get high anxiety on crash days too, sometimes this can be with head and eye fatigued or just a body crash. I get nausea too. My gp has been useless and I've been like this for 18 months and just treated for an underactive thyroid which is recently well within normal range.

    I find it terrifying when I crash. I've had 2 doctors suggest cfs but joined confirmed it. My gp is leaving next month and he's handing my care over to a female gp. He wants me to write a letter explaining exactly how I feel daily and during crashes so the new gp can make her own decision. He's seen me so many times and done nothing but blame depression or mood. It's so unfair because I can't at 37 be active or I crash. Yesterday I crash so badly. Sunday my fatigue was a 6-7 out of 10. Recently daily has been about a 9, such horrible daily fatigue and a crash where I struggle to even walk to the bathroom is a 10/10. Sunday was a good day so I baked cookies, did some washing, folded washing, has a bath and then went to the duck pond with my husband and daughter and it was after that I crashed badly with leg weakness and feeling dizzy standing and a sinking into the ground feeling. Then I woke yesterday unable to walk around due to how weak, sinking into the ground feeling and crippling body fatigue. I cried most of yesterday purely out of fear. My gp gives no firm diagnosis and just blames depression! I want to do things but I can't ids not that I don't want to so I know it's not depression at the root of this.

    Sorry to offload. Thank you for replying. I appreciate any replies I get here.

    Julie
     
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  6. Rossy191276

    Rossy191276

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    I would say don't consider a lack of flu like symptoms a reason to discount ME... A LOT of ME patients don't get them with a common theory being that the immune system is actually on overdrive which prevents colds/flus... And a simple way to figure if primary cause ME rather than depression is how you feel after exercise-- if you crash from exertion then probably ME-- which of course can result in secondary depression anxiety
     
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  7. Jemima37

    Jemima37 Senior Member

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    Thank you

    Since being ill with this chronic fatigue and crashes I've not really been ill. I've had 1 virus and I didn't get the full blown cold like my family just a cough and dizziness which lasted 4 weeks. My family were floored with it and had a fever and bad cold too. Strangely I escaped that part. I do feel my immune system has been strong but weirdly daily I feel so ill and heavy with fatigue.

    I score high on a depression test in recent months but it's been caused by this 18 months of fatigue and crashing. I only crash after exertion or stress. I have ptsd as I was attacked in 2012 by my brother. My mother and sisters abandoned me and ostracised me as I refused to forgive him for a third time. I was left agoraphobic and anxious after the attack. I had therapy and meds and by 2014 I was fine. I then in summer 2015 started with fatigue that worsened after another stressful event in late 2015 when my son was bullied to the point he became suicidal. I broke and during that time my fatigue and crashes began to worsen. Ever since I have been unwell. My mother visit me at Christmas wanting to talk, it was emotional and I panicked badly and for 3 days after I was in such a severe crash I couldn't walk around or function. Similar to yesterday's crash. So I seem to crash with any stress, upset or after exercise. Even light housework can crash me.

    Thank you for your reply again it's reassured me.

    Julie
     
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  8. jimells

    jimells Senior Member

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    Even a nitwit doctor can tell the difference between ME / POTS and depression by asking the patient a simple question: "What would you do if tomorrow you woke up well?"

    Most any ME / POTS patient has a list as long as their arm. People dealing with depression, not so much. The depression questionnaires are mostly useless because they equate physical limitations with lack of motivation. Many ME patients, because they are exhausted, present with a flat affect, which doctors instantly assume can only be caused by depression.

    I have struggled with depression on and off for much of my life. It is very different from ME and POTS, but doctors refuse to recognize the difference. Our only defense is to become experts on our own individual illness, as difficult as that is, and to refuse treatments that are inappropriate.

    POTS causes me crashes that are different from post-exertional malaise (PEM). Sometimes they come on very suddenly. Recently I have had episodes that start off feeling extremely cold (one time my temperature was actually 95.5 - 1/2 degree above hypothermia - yikes) followed immediately by shivering, shaking, cold & clammy hands and feet, looking pale, discolored hands and feet, increased blood pressure, difficulty thinking, feeling like I'm dying, etc. These are signs of increased adrenaline/noradrenaline. Sometimes episodes start with tachycardia, maybe even while laying quietly on the couch.

    Not only do doctors assume that fatigue/exhaustion = depression, they also assume the only possible causes of hyperadrenergic symptoms is panic disorder or an adrenal tumor. I fail to understand how their thinking can be so limited. It seldom occurs to them that symptoms can be caused by illness that they are not familiar with. I guess it's just so much easier to diagnose panic disorder and dump the patient on the tender mercies of the psychobabblers.

    When adrenaline increases, one effect is reduced blood flow to the brain, which can cause difficulty in thinking, difficulty standing, etc. I have finally worked out that the treatment for me is to take another dose of an alpha blocker (I use 50 mg trazodone pills cut into quarters). If I'm also having tachycardia, I'll also take a dose of a beta blocker (one-half of a 25 mg atenolol).

    I don't know what causes these episodes. For me, any kind of emotional activity causes an exaggerated increase in adrenaline, so I try to avoid that. I also suspect a mast cell activation disorder, but since I don't have the classic hallmark symptom of hives, I don't meet the criteria, so I can't be properly evaluated to find out if I do have a mast cell problem. It makes no difference that research shows that only half of mast cell activation syndrome patients have rashes (Afrin 2016).

    A few months ago I started developing widespread itching, especially on my back. It seems to be triggered by such mundane activities as standing up, a hot shower, eating, etc. After I stumbled over the paper "Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders", I started taking zyrtec, an over-the-counter anti-histamine. It has almost completely stopped the itching, and I haven't had a POTS crash in a month.

    As other posts above have mentioned, POTS can be treated, but it is almost impossible to find a doctor that knows that. Good luck.
     
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  9. Luther Blissett

    Luther Blissett Senior Member

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    Hi @Jemima37 , Do the feelings change with temperature (especially heat?)

    A simple thing to try is make sure you are drinking 2 litres of water a day, but especially make sure you are drinking in the morning.

    I've just made an electrolyte mix that is simple and it helped me last summer. I struggle when the temp gets about 22 degrees C.

    Recipe for 1 litre : 6 level tablespoons dextrose powder, 1/2 level teaspoon of sea salt.

    Dextrose powder is available at my local pharmacy and is quite cheap (about £1.50 for 450g).

    You might find http://www.potsuk.org/ helpful too.
     
  10. Rossy191276

    Rossy191276

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    Thanks for that answer Jimelis... Love the doctor question and so simple... I also have been reflecting on POTS crashes vs emotion overwhelms of which I get both...It is difficult sometimes for me to differentiate what begins a sudden extreme crash that puts body in complete shutdown as sometimes I think it is a combo of pots + exertion/emotion which of course triggers adrenaline....
     

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