Recently had tilt table test and almost blacked out, blood pressure dropped along with SATS

thanks kate, but how do you know how much salt to take in?? Do you get a electric shock feeling in your head ever, i dont know if i shjould drink water or,, take in salt, how do you know when to take what??

Hi ok so I drink a bottle of water before I get up, then have a cup of gravy then I just drink lots during the day and have a ham wrap and some marmite i keep it with me in my bag.

If I am out walking the dog I have a spoonful of marmite and a bottle of water or if I'm shopping.

How much salt did you have before you got a diagnosis ?

For me I had barely none so I responded very well to salt and water.

Kate...............did i read that right, you drink a cup of gravy in the morning?? seriously? i dont really have salt except for small handful of salted nuts, i drink about 2 litres a day of water, but more than often less than that, but not a bottle before getting up, ill try that though and see, hate marmite im afraid, i do take bottled water out if shopping though.

Yep cup of Gravy used to it now.

Salt is a major factor i can't stress it enough.

Yesterday I had a 2 hr meeting then had to go up 5 flights of stairs I got home my heart was pounding blood pressure Low was dizzy couldn't concentrate so had 2 bottles of water 4 Yorkshire puddings and a mug of Gravy cup of tea and biscuits and within minutes felt better. It's vital to keep the blood pressure stable if u want to feel better.

Kate................haha what a diet, but yes, boy do i want to feel better, i am so tired of this illness, the fighting i have had to do,  ive had it since childhood, struggled massively to get recognition of what could be wrong from gps.   Since the age of 21 gave up with drs, and ive just tried lifestyle changes, but always ended up going back to gps when it was getting out of control or, severe, we need to know whats wrong before we can deal with it.  Its got much worse since menopause, im 56 but i am now post no period for a year, it is settling but feel lousy today like i have the flu and weak, balance is very off.   I know its affecting my sugar level can deal with that, sitting when i feel like im gonna pass out, have been drinking water for the dehydration, im constantly thirsty cant shift the thing, then when i feel better, i stop with it all,maybe thats where im going wrong, im not taking anywhere near enough water, or, salt, in i know that, i just get a bit scared incase i take in too much then, also, im sure in part something is going on with my low blood volume!   I remember the fast heart from in the past, especially when i get hot during summer months body goes like lead, hot baths sometimes do the same.   Love tomato juice, remember once years ago, i felt lousy whilst out, ordered a tomato juice felt really well after one glass, so, would this do as an alternative do you know? did the drs work out that diet for you??  I will will defo try the gravy, but any advice would be greatly appreciated along the way.    A mug as well, thats even bigger than a cup!!  thanks Kate! 

Hi Joyce............thanks for replying so soon, i have had problems with lots of different systems around my body, then during perimenopause developed chronic fatigue syndrome, however, after seeing the specialist for it, he said, he though it was being caused by something else. CFS/ME comes with lots of neurological symptoms, however, it can be the other way round, the dysautonomia causes the CFS, and the tilt table test, is to show if your BP drops when your stood, which both ours have, SATS also dropped, and if blood pressure then raises when lay back flat, what the specialist did first to me was, stimulate the vagus nerve which is in the neck amongst other areas, its in the  brain also know as nerve X, he stimulated it to see if it triggered any symptoms off, which it did, did you have this done?? its the vagus nerve possibly in me thats damaged, this nerve controls, the heart and blood pressure, our periods, sugars, digestive system, bowels, and bladder, inner temperatures, lungs and diaphram,  i have problems in all these areas, but what will happen is, that when they test any of those areas, organs,, or glands, that your having trouble with, and which are controlled by this nerve, they will all be perfectly fine, because there is nothing wrong with them whatsoever, but it is the way there being made to work by this nerve malfunctioning, there is no treatment for a damaged nerve, but they can treat all our symptoms instead, i am waiting now to go to the cardiologist to hear the test results, all though i have already been told what happened, but not my confirmation yet, it will give me so many answers if its this  the tests and years i have lived with this.

I am fairly sure, i was born with this problem, as i remember lots of symptoms from being as young as 5, and it got worse over the years, period times became a big problem for me, but it settles, but it feels when its severe that everything in my body has gone wrong, and since the menopause its been acute, by any chance joyce, do any of your symptoms become worse during your cycle if you still have one??  and by any chance does your breathing stop when you try to sleep? how long have you been having problems?

Hi Elaine

​yes they did do that with the vagus nerve.I also have problems in all the ereas you have I do have Rhuematoid arthritis I have had it for for 40 yrs I am now 68 so dont have periods now..lol I dont think I haveexperienced stopping breathing while asleep but I  know my heart rate and BP are very low when asleep after having the 48 hour monitors on good look for your results x

Hi Joyce

Yes my heart rate is low whilst sleeping also, good luck with your test result also joyce if your still waiting for any. x

Thanks Elaine x

I posted a blog on Elaine's. I would greatly appreciate your advice as well. I forgot to mention I have been having aching in my joints as well. Thanks

Hi Consuela.............If you have POTS, then i presume you have had a tilt table test? have they diagnosed you with the condition Dysautonomia, as this  is whats at the root of our illness, its a malfunctioning nervous system, the part thats damaged is called the Vagus nerve in me anyway, but if you research the Vagus nerve, you should be ale to tell if this is you..........this nerve controls the Sugar level, heart and blood pressure, respirtory breathing, digestion, Hormones, blood volume, so you will have problems in all these areas, with dysautonomia you will not have your symptoms all of the time, and some times you will not have them at all, i too started with my problems during my childhood, got worse during high school with standing for long periods in morning assembly..............noticed during this time my heart would increase also, then when i started my periods, i noticed my symptoms were worse just before my cycle, fine when i was on, then down again immediately after finishing my cycle, then i was bad during pregnancy, and viral illnesses, since the menopause kicked in aged 47 i took yet another dive and havent recovered since things got so bad i had to leave work in 2012 still trying to get things back under control like i use to have.

To control this illness yourself, you need to get up early every morning, to stop your body clock going out, which in turn will then alter your sleeping pattern which will make you fatigued, and you will then get lots of neruological symptoms, when you become fatigued it is ok to exert yourself, but, dont over do it, as this then knocks out your adrenalin, sugars, and hormones, so to control the sugars, you eat little and often, eating only protein, fats, and little unrefined sugars to avoid highs and lows, as this illness knocks your sugars out of balance,  when you come to stand to avoid passing out, you get up slowly, if you find you go to pass out after standing for long periods, you keep yourself moving, if your in a queue and you cant do that, i tend to sway from hip to hip, to stave off the passing out feeling at the same time, i get an incredibly aching back as if i am carrying all my weight in my back, if you cant stave it off doing this sit as quickly as you can and drink water to bring your blood pressure back up, drink plenty of water to keep yourself hydrated to avoid low blood pressure, and low blood volume, if this happens you will knock your electrolytes out, so will need to take in minerals, but you would need to be tested further to see what it is by way of minerals that your body needs, but you could try some salt occasionally in your diet see if this helps.

If you suffer with slow digestion, then constipation, and later on severe runs, after eating, lie down this will help food go through better, after 30 mins get up, then drink water to avoid constipation and go for walks to keep the bowels moving, it causes IBS type symptoms and this is why later on you may get the runs.

Ive had problems with convulsions over the years, severe low blood sugar, my breathing stops because of how it affects my lungs, and i sometimes suffer with irregular heart beat, and slow digestion.

Some people get benefit from taking Sudafed cough remedies as it contains a steriod that helps people with this illness, and a decongestant has helped me in the past, along with real root liquorice as this also mimics steriods which helps us, however, you shouldnt take the liqourice if you have irregular heart beat, as it can make it worse, so i had to stop taking it.

I could go on and on about it but it would be so long, if you need to know anything specific write back.................im struggling with it badly at the moment, and it does make you ache terribly, i get rashes, very very hot, but never sweat, it goes on and on, its a horrific illness and makes you feel extremely ill.   there is no treatment for the damaged nervous system, they can only treat the symptoms.

All the best...............Elaine

I am so sorry to hear about your struggles. I have not had the tilt test done before. I had not even heard of such until I was researching my newest syptoms. My cardiologist is the one who diagnosed me with POT'S. I also have Raynaud's which now I'm sure this is part of the illness. He pretty much said there is no cure. This is the worse I have ever felt in my life. There are times I feel like death us knocking at my door. What is the prognosis? How many years does an average person live once symtoms get worse? What labs and test should I request? Are there any support groups online? It seems like no one really understands how I feel. I have not seen the doctor for my new symptoms. I'm sure like everything else they won't find a definite answer. My youngest child is 6. It's hard to keep up with life at times. I am single with 4 children at home. My memory and mind doesn't work like it use to. They diagnosed me with ADD but the medicine does not help. After reading all this I'm sure this is probably due from the lack off blood supply to my brain. I have also noticed I my hands started to shake before o eat. I'm sure my sugars are low like you had mentioned. I don't understand why everything hit me at once. Thanks for the response.

Lots of changes going on through out the body will triggers your dysautonomia, stress will trigger it, a viral infection also, emotional upheaval etc,  time of the month, fatigue, all will trigger pots, or dysautonomia.  I was doing really well with mine, until the menopause kicked in, since then, i haven been able to get the control back, dont know what to do, and yes it does make me think also how much longer then have i got with this, it does in time cause neuropathy so things will stop working properly, it can cause heart and lung failure also, and this is the one that concerns me the most, as my breathing stops at times wheni try to sleep, my heart slows right down at the same time so, very scary, but we just have to control it as best we can, and hopefully with the help of drs get through it as long as we can with no adverse affects, but wherever you dysautonomia is affecting you the drs will be able to help and at least control the symptoms which is something, just to feel well for a change would be nice.