Dysautonomia flare?

[Mito Momma]

I have been having episodes of what seems like a sudden dysautonomia flare up, but I'm really not sure what's happening so that's why I'm posting. I have a sudden onset of multiple symptoms and I feel terrible. I just have to lay down until it passes, which could take anywhere from an hour to when I wake up the next day.  My symptoms include a headache, extreme fatigue, dizziness, shaking, chills, and muscle pain all over (which I already have but it's significantly worse during these spells). I have 2 strange symptoms... the constant feeling of having to urinate and when I stand up I have the unavoidable need to stretch my legs.  I had a spell yesterday. I get the chills with these episodes but yesterday I was absolutely freezing. My body must've thought I had hypothermia because my blood was being shunted away from my extremities. My fingers and toes were white.

Does any of this sound familiar to anyone? I was diagnosed with POTS/dysautonomia caused by Mitochondrial Disease about 8 years ago. My dysautonomia is normally well controlled.

[Always hoping]

I'm sorry that you are dealing with this.  While different symptoms, I tend to have sudden flares.  While I am lucky enough to be able to function in a somewhat normal manner, my symptoms can come and go suddenly.  When one comes on it can last 5 minutes to all day.  Laying down when it starts definitely helps it pass quicker.  Sometimes I'm terrible and an hour later I can feel fine.  It makes scheduling life difficult!  When in one of these flares, I do get the urge to urinate.  Which of course getting up to use the bathroom is literally the last thing you want to do at that moment.  I don't get the need to stretch but another weird one - I get extremely thirsty.  I can usually tell when an episode is going away because the major thirst starts (like 8 bottles of water in an hour thirsty).  I have no idea why either happens.  I can't say its because I'm dehydrated since I can be completely hydrated when the episode begins.  This is a crazy thing to live with.  Good Luck and I hope that the episodes are few and far between.

[angelloz]

When I am in a flare I also need to urinate immediately upon standing. I believe I read at one point about that being a hyper pots symptom. I too have had occasional bouts of muscle pain and almost feeling flu like symptoms but it usually passes after a couple of days. Sometimes I winder if I have over done it a few days before. Let us know how your doing. Hopefully it will soon subside.

 

[p8d]

I get the need to urinate on standing pretty much all the time, flare or not.  I have an autoimmune disease and never really know which is flaring unless I get joint pain, sore throat and malar rash.  Have you been recently checked for autoimmune disease?  Mine showed up awhile after my POTS and I saw some video by Dysautonomia International recently that happens to some of us.  Just a thought.  Feel better.

[Bluebonnet08]

Yes, I have random flares.  For me, they seem to follow a hormonal pattern.  You could keep records and see if they are occurring around a certain time in your cycle.  When I am in a flare, I get IVs now at a Hydration Clinic.  It seems to push back my epsidoes and my symptoms go down, at least for a little while. 

I have been much more symptomatic now that I am pregnant (third trimester).. I am getting some shaking/chills episodes that my OB said were hormonal....I think hormones do play a part in POTS.