ramakentesh

I often get those 'attacks' that someone here suggested are called 'autonomic storms.' First i get very tired and sleepy, and then i get freezing cold - so cold that my whole body is trembling violently - my skin goes pale and my veins dissappear, and im FREEZING! The i start to get restless or anxious, and then my heart begins to beat hard for a while. Its basically in this pattern: tired, achy, freezing, trembling, out-of-it/anxious, dizzy, surging feeling in head and heart palps, then strange feeling that lasts for days afterwards/increased orthostatic intolerance. I take betablockers every time i feel it coming on - which usually only is after i have had some alcohol or stress, and it goes away.It freaks out the people i live with because i tremble so much that peopl think im having a fit. When i first got pots, and for a while before, i constantly had cold hands and feet - all the time - annoyingly... Now its gone away as have many of my symptoms after two years of slight symptoms, and one and a half of terrible symptoms - hand tremors, vitreous floaters, dizzy and tired after meals, weak, pale, heart racing, dizziness, spaced out and out of it, etc...

when my pots was bad it was like one minute i was on overdrive and doing everything at light speed and anxiously, the next i was dizzy and so spaced out that i didnt know what was going on. Even now, in a crowded room or at a mall walking around in a crowd i feel like my brain is a bit slow or something and i cant keep up on the conversation.

You must remember the test is just a test - POTS symptoms wax and wane, so you might pass one day and then be very ill the next. There is an injection that makes your sympathetic nervous system go mad that i was given during my TTT and that brought out all the symptoms. I didnt faint , ut was positive and i was diagnosed primarily on symptoms alone.

'Have you ever tried anti-depressants though? Since panic disorders often mirror POTS symptoms, many people have success with things like paxil' No offence, but i wouldnt suggest anyone try taking anti-depressants for a condition such as POTS. Most people dont realise that MDMA (ecstacy) and SSRI antidepressants work in almost the same way, by interfering with the normal serotonin uptake in the brain - something that you wouldnt want to mess with unless you were sure you were suffering from a psyciatric, rather than physical illnesses. get your blood volume checked - that is often a trigger or cause.

It would be interesting to talk to a kidney specialist about the possible risks that low blood volume might cause. Which test did you have done to diagnose your low blood volume? Do you assume that its a problem of renin levels or something along those lines, since even drinking water all day doesnt seem to lift mine much either.

Does a state of hypovolumia increase a person's risk of kidney disease?

i understand the paranoid mode thing. Ive been there. My tips for combating pots for me anyway - were firstly valerian root and betablockers to combat the anxiety i experienced from the increase in nervous system adrenal activity, a big salty breakfast (check with your doctor) of bacon and eggs, cutting out all diaretics like caffiene, and when im very dizzy i drink licorice tea which increase blood pressure and releases beneficial adrenal hormones.

for me - the only option is bed rest, and betablockers to get rid f the autonomic nasties... Mine go away in a few days and then i try to keep busy yet not push myself to get throught he dizziness - a big salty breakfast can help for me too.

thanks for that - at least i know what to look at now.

My dad recently passed away from eventual complications of cardiomyopathy - and the doctor was going on about that fact that this condition can be hereditiary. I didnt want to mention my POTS because this would just raise his eyebrows, but when my dad was sick we often talked about our symptoms and the dizziness was very similar. Are there tests that i should get done in the future to look out for this problem?

since tremors are one of my main symptoms i also care greatly. Mine is a hand and foot tremor that worsens with dehydration or after exercise. It is not an intention tremor but very similar to a thyroid disorder.

I thought it was interesting that a study was conducted that found that 80% of CFS patients had hypovolumia - low blood volume - so as low as 50% normal (an amount that would probably cause hypovolumic shock and death if takne out all at once). I would be interested in the amount of cases of POTS where low blood volume was a problem - i know im one - i dont get any blood pooling other than to my head when i bend over.

For me the onset was sudden - after heavy exercise too early after a viral infection. I was dizzy, spaced out and palpitations, tremors and felt like **** basically... My condition has gradually improved to the point where i am virtually symptom free for days on end, but the progress was slow. It has been a year and a half since i got ill.

Alcohol can be strange for me. I have very low blood volume as it is, so dehydration for me - alcohol induced - can make my heart rate higher, my tremors worse and my dizziness bad. If im not feeling symptomatic i do drink on occassion, but about four times , two days after drinking alcohol (especially red wine), i have had a quite nasty 'autonomic storm' - which is basically where my autonomic nervous system goes nuts and i get body tremors, anxiety, mental confusion and rapid heart rates - like a POTS crash i suppose you would say.

POTS itself causes an overactivity of the autonomic nervous system due to a hyperadrenal state - and these symptoms mimic those of an overactive thyroid or possibly ADD/hyperactivity.

I initially thought that it was a symptom of POTS, but if i had not taken my blockers for a week or so it wouldnt happen, but if i was back on them and qithout many symptoms i would get very photosensitive. One time i sat for about 4 hours in moderate sun on one day and got a tiny bit of colour, then the next day after taking a beta blocker for tachycardia, was in the same kind of sun level for an hour and was absolutely roasted red. Since we live in Australia this can be a real issue...

I just thought id warn everyone that betablockers seem to make me very photosensitive - i get sunburnt very easily when im on them.

Thanks all for replying to me - its reassuring to realise that others are going through with the same stuff that you have to deal with from time to time. The feeling usually sort of stays around for about three days or so and now its cleared thankgod...

Im another aussie. How have you gone with finding a good doctor?

ive had major dizziness with blood pressure that was that high - when i initially had symptoms my pressure was high and i was still dizzy.

could be - mine just came out of the blue - i had been a little dizzy beforehand, but then i just came down with symptoms...

could be - mine just came out of the blue - i had been a little dizzy beforehand, but then i just came down with symptoms...

there is so much doubt among thyroid patients about their endocrinologists- they have all sorts of trouble - so maybe medicine is getting wrong.