ramakentesh

Definately familial - there are a b\number of people in my family in the past who had strange reoccurent fatigue, tremors and 'nervous system problems.'

you do improve but its slow going - ive been sick for over a year and im much better now, but certain things - like missing my salty breakfast or taking a antiinflammotory drug can knock me for six

my heart is nearly always quite stable without betablockers and i still get symptoms - particularly if i miss breakfast - and in the mornings.

Most of these are due to hypovolumia - the thirst for me is the indicator

I remember when i was that bad. I had slight symptoms for ages, but nothing that was really bad until it suddenly came on afdter a period of very heavy exercise and a bad cold. I was so spaced out that i didnt know what was going on - tired, over emotional, anxious, so incredibly dizzy, weak, pale, lost heaps of weight, got heaps of vitreous floaters in my eyes, would tremble after the slightest exertion, tachycardia if i even lifted my hands, couldnt handle alcohol or caffiene, was constantly thirsty, restless, couldnt focus and just felt crap.

I didnt even work out what was going on until i had already started to very gradually improve - after nine months i started to feel better. Now days - its been 11 months and i can walk every night and pretty much do most of what i used to be able to.

My eyes have never been the same though, and im still thirsty and pissing every half an hour - and i still get very dizzy in the mornings...

Although i fear a relapse, i have definately improved through just time really - i cant put my finger on any other reason.

i too get this but only after breakfast - straight after to an hour or two later - its mainly dizziness, cold extremities, short bursts of palps, sapced out feeling, and my blood gets low.

I find eating more actually seems to help, but im not sure why.

so do you think that your pots is autoimmune related as most thyroid diseases are?

Yeah i do - its in my sinuses exactly - behind my nose and eyes.

WHen im getting an eposide, my skin goes cold and clamy, and if i dont drink or eat im in for tremors, dizziness and unwellness...

i was reading something on Cardio Myopathy that concerned me - please im not doing this to stress anyone, just thought id mention it. This was in a medical journal i bought from a garage sale, and its from the early 80s, so ill tqake ith with a pinch of salt (or a teaspoon to make me less dizzy)...

It said that most cardio myopathys are of unknown cause, but that certain metabolic disorders predispose people to this illness - namely sarcoidosis, hyperthyroidism, and other hyperadrenal states or symptoms of beta overactivity.

Is this still a current concept in medicine??

What meds are you on for BP - mine is the same.

Endocrinologists in my opinion were quite hopeless. Noen of them even knew what POTS was, and one told me that CFS was just 'depression.'

If its not your thyroid or overt hypoglycemia they will try and put you on zoloft in five seconds in my experience.

Go with a proper physician or a naturopath that doesnt try and fit you into a diagnosis that no one can actually prove - if a naturopath says that they can help treat some of your symptoms, ive found these kinds of herbalists are much better than the others. Trust me - you will spend up and be no better off 99% of the time.

it has such an impact on your life though - the incessant dizziness - the lightheadedness that you get if you stand beyond your 'limit' which often old men can beat... or how you nearly pass out if you lift your head up, or bend over and have your head forward... Or how you cant eat a big meal without feeling like your sinking and spaced out...

Thankfully ive improved, but it still has an impact

ive never been tested for that, but i have constant thirst and i seriously urinate once or twice every hour. When i did a urine test my quack was like 'how much did you drink the night before?' and i said that was normal for me - he just shrugged.

difficulty focusing, dry eyes, sleep problems are all symptoms of POTS alone. So those could really be all down to POTS. I dont know about adrenal fatigue or leakygut syndrome - but i tried rememdies given to me for over nine months when no one knew what was wrong with me and they did very little. I liked valerian for sleep, but i felt tired the next day.

My advice and i am no doctor, would be for your friend to firstly try and see someone who knows about POTS - there are physician lists on this site that might help there - and then see if they can help her.

some of those descriptions sound similar. Some nights i get a pulsing haert beat in my head which is very hard to sleep with. But i also get this weird sudden pressure sort of feeling - like a wave of dizziness or weirdness.

It usually occurs if im lying there trying to sleep in - they keep waking me up subtly...

Some nights i find that i get this strange pressure in my head sort of at the back of my head or behind my nose - its quite strange - usually worse when im already wired and have a higher than usual heart beat. Could it be an overstimulation of the nervous system for standing that continues when i lie down and is a little too much or something??

i find there are nights where i just lie there with this weird pressure in my head and feeling wired and weird. I cant sleep at all - its like my brain just wont go into the right waveform for sleep or something.

POTS got me in the eyes bad as well - i got really bad vitreous floaters - my eyes were full of them, and i couldnt focus. My eye pressure went from mid normal to borderline glaucoma (19.5 and 20+ is glaucoma).

They are better now, but i had great trouble focusing - still not the best - i find tht bright lights and computer monitors make them worse.

very interesting post. Id be keen to hear how it pans out.

My POTS symptoms were always worse in the mornings - i was getting very dizzy and couldnt handle standing much at all - spaced out and very weak. I was also getting hypoglycemic reactions - im not sure if this was actual suger levels or just an overly adrenal reaction, or maybe a drop in blood pressure...

on my doctors advice, i have started having a large breakfast everymorning - importantly of low fat bacon that is very salty - two or three pieces atleast, with one or two eggs for protein and some tomatoes.

The result is that im greatly improved - and my symptoms are much better. I still get dizzy, and i still get hypovolumia, but i feel much less of an impact on my life.

I also only use betablockers at night now.

I find that i used to cycle from very hypovolumic in the morning - dizzy, weak, cold and spacy and then towards the end of the day i would get very wired - tremors, hot, tachycardia, etc. It was so bad that my bolldpressure would spike higher than it should be. Since my new diet which would be probably quite bad for others with high blood pressure - it has regulated back to normal.

Hope this helps someone.

WHen i first came down with bad POTS i lost soooo much weight that they thought i had an overactive thyroid - a battery of tests all proved negative though.

My doctor told me that the same mechanism is at play - an overactive nervous system.

the tremors relating to POTS are often very similar to an overactive thyroid - in that they both relate to an overactive nervous system but for different reasons.

The overactivity in POTS relates to the body releasing more adrenalin than normal to maintain blood pressure to the brain lagging because of hypovolumia as an example

i can also relate - i go through periods like this, then periods where i constanly wake up at say 3am and just lie there until morning

i get this thing in my ears that if i push on them or pull the lobe i get this burnign pain that is sort of pleasant - almost like its relieving pressure - its good and bad at the same time - does that sound similar??

I was wondering whether others had any of these strange symptoms relating to POTS?

horizontal crease/lines/rivets along fingernails that started with bad symptoms and reoccur after bad episode of symptoms.

sudden sleepiness where its hard to hold your eyelids or head up

sore or painful ears.

cheers...

As a person who went to 9 different GPs and 5 specialists before I found out about POTS on the internet and demanded testing (at a cost of around $1400 australian dollars and nine months of worry, fear and ridicule), i feel that i have the right to say that frankly, i have little or no time at all for doctors -

The arrogance to which doctors prescribe in their daily dealings with patients astonishes me - you would think they have all the answers and know it all - when in actual fact they can only explain one in twenty cases of high blood pressure and dont know the cause of around 60% of illnesses and conditions.

I think they are all rushed and if its not an easy answer, its just a palm off with words liked 'stressed', or 'anxiety' and the usual perscription of 'anti depressants' or 'rest' - they just dont take it seriously.

I had a few good doctors but even then, they were sick of me by my fourth consultation and just wanted to appease me to get me out of their hair, more than a feeling of genuine concern for my welfare. I was so irritable, fatigued and hyper that im sure they all just wrote me off as a nutter as soon as my thyroid came back normal - not that an overactive thyroid causes dizziness which was my main symptom!!!

It would be malicious to think that if the same thing happened to them they would know what it feels like to doubt your self and actually start to think that maybe you are going mad... The depression and worry that this caused me was terrible - and it was all unneccesary...

Venting feels good!!

Maybe its the overactivity of the nervous system and the adrenalin levels in the blood being higher to maintain pressure to the brain.

I have never been an anxious, irritable, snappy person until i started having these symptoms. as my POTS got worse, and when it was at its worst, i was terribly snappy and irritable - i was a horror.

I also found that i could not handle stress at all as well - i had to go to a job interview and i was so nervous i couldnt concentrate on what i was saying, and all my symptoms came back so i had to leave early.

Magnesium is a must! I take Magnesium lactate and it helps with the palpitations and then general mental emotional state - i feel more leveled and back to normal, unemotiomal, calm self (the self i miss sometimes!)