Pots crash. Feeling scared

[Stephanieann]

So after a month of being released from the hospital and having much improvement and feeling almost normal, this weekend I am crashing down hard again. Starting to get an increase in what I think is small fiber neuropathy starting, ( burning, tingling, prickling) , electric zaps throughout my body. Not being able to sleep hardly at all, waking up with hot flashes, food not digesting, overactive bladder, and no appetite. And of course it's labor Day so my Dr isn't in office. How do we get through this without rushing to the er? I always feel like I need or want immediate care and the waiting is scary because I feel like something is attacking my body. I have found no cause for my pots as of now. It started during my pregnancy. I have a two month old and a six year old and luckily a very supportive husband. The thought of living in pain and not finding a cause and just getting worse is kinda throwing me over the edge. At least last time my pots crashed I wasn't feeling physical pain. ;( thank you for listening. I just hope I can get through this

[angelloz]

You can get through this!  I understand about wanting answers and care right away. Yep, always a week end or holiday..... I do know for myself, the worry makes symptoms worse, well maybe I am saying that incorrectly. I don't want it to sound like your symptoms are being caused by the worry in any way, just that worry makes it more difficult to cope with what is going on. I think lots of things can bring about a downturn. Waking up hot, plenty of urinating...all very familiar. Hang in there until you can consult with your doctor. But never feel badly about going to the ER. Sometimes just a round of IV fluids can help.

[Stephanieann]

Thank you @angelloz. I am feeling a little better at the moment. I was able to eat at least and going to try some ambien my Dr prescribed to helpe sleep tonight. I have my first mental therapy appt tomorrow and making phone calls first thing in the morn. Hopefully it doesn't take too long to get in with these doctors.

[DizzyGirls]

Sometimes taking a medicine to help calm you can calm the very disagreeable autonomic system.  My daughter has been plagued with crashes this year.  The most severe was after the 4th of July.  Still battling with it, the burning, tingling, numbness, lack of circulation.  Most likely her very overactive ANS.  Hang in there, and hope you can get some help tomorrow.

[Stephanieann]

Thank you @dizzygirl. I'm hoping that is what it is and not  a progressive neuropathy. I was taking klonopin and all this started worse when I stopped the med. But I don't know if that's the cause or was the klonopin masking issues? So many questions. Even an ambient didn't do much for my sleep last night. Should get some answers soon. Thank you for listening. Sometimes that's all you need

[TCP]

Firstly, please DO NOT PANIC! Stress will make it far worse, as I found out to my cost. 

I feel your pain and I KNOW what you are going through. I had all of this happen to me 9 years ago and I went to ER (A&E in UK) 7 times and admitted twice. The doctors were clueless at the time. I have since been diagnosed with EDS 3, POTS, Neuropathy (I am guessing Small Fibre, but the Neurologists do not want it investigated). I also have strong signs for Mast Cell Activation and I am in the process of getting that sorted. Knowing what I know now, I would say you have Mast Cell Activation. I wish I knew years ago that when I had Glandular Fever in 1984, (plus an operation and miscarriage), that this was causing most of my symptoms which got worse and worse. 

I now follow a lifelong eating plan with supplements to help with the condition and I am starting to feel much better. Message me if you want any details and help. 
Don't worry, as it will improve.