Other symptoms besides POTS

Treatment and medication
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Hi everyone, 

i wanted to ask if anyone has other symptoms of autonomic nervous failure beyond those such as POTS? I'm in my 30's and was diagnosed with significant autonomic nervous failure at the beginning of the year. I've had all manner of problems, after multiple failed surgeries, which left me with what they though was CRPS. It now looks like I have EDS, POTS as well as dysautonomia and asthma. I suffer with immune system problems such as chronic urticaria and angioedema, chronic widespread pain, muscle spasms, numbness and twitches along with some sort of fitting. I'm getting treatment at UCLH although I'm only at the beginning of testing. I'm getting the feeling from some of the consultants that my problems will only get worse, and they believe the autonomic nervous failure began when I was a child. I'm starting to worry that this is more serious than I realise, as I'm finding myself unable to get up and move on a regular basis. Am I overreacting or should I be pushing harder for treatment? Thanks in advance for your help. Louise

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Hi

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Hi

I was diagnosed with vagus vagel syncope, which is very similar to pots, and can lead onto pots itself, mine is also causing chronic fatigue syndrome, sugar level problems, and slow dijestion,  i suspect at times my nervous system does also fail but thankfully it recovers, nervous system failure is rarely fatal, but it does depend on the type and severity of the problem, pure atonomic failure, known as PAF for short, is one that isnt always tending to be fatal, i think its the later in life ones that tend to be more severe and fatal, but there is the exception,  treatment tends to be lifestyle changes, main problem causing symptoms is due to low blood volume, so, i drink at least 3 litres water per day, and being very liberal with salt on my food, avoi over exertion, and stick to gentle exercise, swimming in particular really helps me, and staying cool in hot weather, including no hot baths, showers, and avoiding high carb meals, and alcohol, i am better in a job where im sat, rather than being stood otherwise i tend to black out, eating exasperates my symptoms,  things for me got worse during menopause, i also believe mine started during childhood, and my first symptom was convulsions, because blood pools in my legs, feet, and abdomen, it doesnt come back up quickly enough as it should  resulting in both my heart and brain being starved of oxygen so, i would fall down and fit, tends to happen more so nowadays after eating, again due to blood pooling in my abdomen causing slow dijestion, then lack of oxygen etc causing the fitting,  it makes my heart beat very slow, which concerns me, if this thing does get worse, is my heart going to stop one day!! as my breathing is already stopping from time to time, and sometimes, because of how i dont seem to feel the need to pee like i use too, but find when i do go its gallons, this is one of the things thats making me suspect that my nervous system is actually failing, but think its temporary, thats what im hoping anyway, otherwise ive been misdiagnosed, but autonomic disfunction are a form of neuropathy.

 

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Very similar symptoms with the blood pooling and syncope, chronic fatigue,fibromyalgia, low bp, hypothyroidism, slow transit colon.  I too have vagus nerve issue which obviously controls all bodily functions and everyday it is a new one. I am 27, on disability, not able to drive, I am having testing at Mayo now but I have been being treated for he last year.

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Hi Louise,

A lot of your symptoms sound exactly like me, I'm 36 and became unwell very suddenly in August 2014 after tring to blow up a water bomb which I thought was a balloon. I passed out and have never really been able to be upright since, with racing punding heart, lightheadedness and presyncope. I have a constant feeling of physical anxiety, like adrenaline excess.

I just had a tilt tlest which was inconclusive but I don't know if they would have checked it against the POTS criteria for heart rate. My GP wrote to the cardiologist to see if I could be prescribed midodrine but they refused. I haven't actually seen anyone who specialises in orthostatic intolerance.

I wanted to wish you luck with your tests and also ask how you got in at the UCLH clinic? - I understand this is the only UK centre specialising in this type of illness. I am going to ask my GP to refer me there this week but I live in Scotland so it may not be straightforward.

Hugs,

B

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Thanks for your reply, it's reassuring for want of a better word that other people know what I'm talking about. In terms of UCLH you're correct that they are the people to go to. I googled my symptoms and drafted up a list for my GP along with UCLH contact information and forced a referral. I would do the same with your GP... Go with the info and it's hard for them not to refer you. If you look on their website you can self refer as well. Hope you're looking after yourself and not struggling. If you need any contact info message me and I'll sort it out for you. Big hugs xxx