ramakentesh

Ive had swollen lymph nodes in my throat that ache since the beginning of my pots - thats when my eyes dried out, filled with vitreous flaoters, i got palps, felt sooo weak, constany tachycardia on staind, dizzy and out of it, tremors, etc. it improved with time.

The dry eyes and red eyes i also suffered during my worst periods. I had eyelid lag as well - as i was so fatigued i couldnt keep my eyes open - shocking feeling. It goes when i started to improve, but the vitroeus floaters continued. They were so bad during my bad phase that i couldnt see without looking through a 'sheet' of vitroeus floaters. They improved with my symptoms. The way it attacks your eyes like thyroid disease almost suggests some sort of autoimmune condition in my opinion - time and research will tell i guess.

Calypso - again i have this in common with you. When my POTS is worse i get that feeling of impending doom - its a terrible and overpowering feeling - according to my doctor it is a result of the sudden overproduction of adrenaline to maintain bloodpressure to the brain - therefore my doctor says that beta blockers and rest are the best remedies for it. I use betablockers to get through it - if i feel it coming on - i start to feel cold, get tachycardia rising, skin goes pale and weird (due to hypovolumia ive been told), i take a beta blocker then and go and ly down. If it comes on and i strat to get the really bad tremors and panicy feeling i just jabe to keep taking beta blocker and stay in bed and read a book to try and ease my mind. It is equally the worst symptom for me - the overactive adrenal reaction causing the anxiety and the dizziness i get every mornign when i walk around. My panicky periods usually come on at the start of an episode of symptoms. I have them usually only now after i drink alcohol (not good when your already low on blood and liquid). Keep the fluids up. Its very similar to the feeling of an overactive thyroid - when i described it to my mum and my endocrinologist they were both quite sure it was my thyroid until it was ruled out and i started getting dizziness and orthostatic intolerance. I know how you feel exactly - its rough but beta blockers are a short term solution for me.

Its rough - ive had minor pots symptoms for a long while - but it didnt get fullblown until last year - suddenly came on -and it took me about 10 months to get diagnosed properly - and even then it was tentative at first and i was always improving no thanks to the medical establishment. I did improve quite well - by having a big salty breakfast every morning and then taking it easy in the mornings - no long standing or walking. I try to move more strenous activities until the evening or late afternoon. It is a slow process but it seems to wax and wane.

Adrenal Tumours usually bring on short bursts of hypertension with all the symptoms of adrenal overactivity - hypermetabolism, tremors, anxiety, restlessness, sweating or cold flushes, tachycardia, etc. These can occur lying down or standing. My doctor says that many people who have POTS have an over sensitivity to their adrenal/nervous system - and their sympathetic nervous system and adrenal systems go into overdrive to maintain blood pressure to the brain which is lacking due to orthostatic intolerance and/or hypovolumia. My main symptoms were like those of an overactive thyroid - so much so that one doctor wanted me to get my thyroid 'out' - my thyroid hormone was always high normal and i spent a good six months researching the possibility. I was always cold rather than hot - due to what my doctor suggests is part of the nervous system disfunction and hypovolumia. I was anxious for days - hyper as - couldnt sleep, tachycardia constantly, yet dizzy every time i stood, spaced out and constantly light headed and breathless. I could walk for more than a few minutes. Now im definately on the mend - the main reason being an increase in salt in the mornings and a big breakfast, plenty of rest and time. My POTS has greatly improved - i now only suffer from dizziness in the mornings which improves throught he day and the occasional burst of tachycardia that i can control with inderal if required.

My dizziness is more a sort of floating weird spaced out light-headedness. I feel spaced out and weird when i walk around especially in the morning. My hands go all pale and cold and i start feeling that kind of light=headed 'giddy' feeling like my head is going to float off or something. If florinef actually makes that feeling worse i wouldnt go near it - its such a terrible feeling and i too have been told its my middle ear, then POTS, then middle ear again...

well i think strangelyt that it might be the computer that is causing the dizziness. It has suddenly returned within two days of arriving at home again. And its a real pain. Does anyone else seem to get dizziness from neon lights and comp monitors?

In australia they say that more patients come out of hospital worse than when they come in.

There only seems to be one Australian Specialist in POTS, and i cant see him for a long while as he is busy. Im wondering if anyone is aware of another Australian specialist?

When i first got sick i dropped so much weight that i looked like a ghost and i was so fatrigued that i couldnt keep my eye lids open half the time - it was terrible. I ahev improved sincve those days and ive managed to put a bit of weiught on just by eating lots of rice and carbs. I even tried to get back into exercising and sometimes it has helped. The anxious feeling is a nightmare - i can never quite work out whether its the anxious feeling (impending doom and confusion) or the dizziness that i hate the most...

yeah im quite confused, but will try a water filter and see if that helps. I am at my worst in motnhs today - my hands are all numb, i feel very weak and dizzy, and i keep getting anxious waves. Its funny how someone else here mentioned that they feel worse - so do i - today is my worst in ages. Its so annoying - i actually was convinced that i had somehow beaten this thing. Maybe its allergy related? Anyway, i might have to move to New Zealand permanently...

I went to New Zealand - and it apparently has some of the cleanest air in the mworld - so maybe that is it - and i was not stuck in an office with recycling air, neon lights and a computer screen all day. I ate the same foods. Im still feeling ok now - not as bad as when i left, which is good, but the symptoms have definately worsened within 12 hours of returning - and although it could just be a coincedence, i find it remarkable that three days into my holidays i felt great right through to the point where on the last day i actually told my cousin that i was 'better' - then i return, stare at the computer, use the shower here and all the normal things and bang - im dizzy, cold and trembling again - and my pulse is banging in my head and making me weak when i stand. When i was in new zealand i even maneged to snow board fora whole day and climb a hill with 1300 steep steps! Now the time it has taken me to type this has made me feel weak...

My POTS symptoms - dizziness and rapid heart rate in the morning, gradually improving in the day, vitreosu floaters, cold feeling, tremors, weird breathless feelings, etc. have been pretty much constant for ages. I went on holiday and as warned, the flight was terrible for my dizziness - i was spinning outbigtime. Then something weird happened - over the next two weeks of my holiday, most of my symptoms significantly reduced. I had more energy than ive had in ages, my hand tremors were reduced (but still present), my dizziness was almost gone, i had the occasional rapid heart beat episode, and the occassional anxiety feeling, but nothing like usual. I returned to my home town and within two days my symptoms are all back - and the only triggers i can think of are my kettle, the shower water or stairing at a computer. WHen i was on holiday i had pure water, rather than clorinated tap water, and didnt look at a computer once - whereas my job requires it. And i definately found that i will arrive at work with slight symptoms, use the computer for a few hours and my symptoms are terrible - dizziness, spaced out - out of it. Does anyone relate to these experiences??

When i have a very bad attack, i get very restless and anxious - a feeling sort of like impending doom and my whole body shakes, i get pale and so dizzy i cant stand. My doctor says that the sympathetic response of the nervous system to hypovolumina is to shoot off huge amounts of adrenal to maintain blood pressure to the brain - thus you shake, sweat, feel hot or cold, spaced out, panicky and anxious. I find that a betablocker works wonders - or valerian tea.

Tremors are one of my main symptoms - worse in the mornings or if ive been standing or exercising. Apparently it relates to the overactive sympathetic adremnal system that fires up to maintain blood pressure to the brain.

its good to know that im not the only one with this problem then. Cheers guys.

Does any one else find that often when they stand or lean forward, they can see their pulse in the edge of their vision and hear it pounding in their head? WHen i lean forward my head fills violently with blood and my head pounds. If i sort of just stare into space when ive just stood or walked up a flight of stairs (now that i can again thankfully) i can see my heart beat in the corner of my blurred vision. At night i lie there some times and my heart is pumping in my ears and i have to lie on my back to avoid hearing it.

to highlight an earlier point about the dangers of certain herbal remedies, i had a terrible reaction to StJohn's Wort - it knocked me for six for four days - worse dizziness, worse orthostatic intolerance, worse weakness and hyperadregenic symptoms. So tread with caution.

wow Runner Girl - again your story reminds me of mine. I too get that weird sort of panicy feeling - jittery - and i often get profound tremors when it comes on, dizziness and lightheadedness in the morning and then hyperactivity and jitteriness that is eleviated when lying down. My heat rate during the wired times can get very high with any movement. standing quickly is the worst. It all started for me with a night of high heart-resting rate and almost fainting. The ER could find no cause for my ailment and suggested a cardiologist. He saw me for five minutes and concluded i was a nut job. I had been exercising harshly for a week only two weeks after a bad flu, and i think this brought it on. i did get dizziness and hand tremors when i drank too much caffiene in the past. During this time i felt 'strange', lightheaded and spaced out all the time, started to get heaps of vitreous floaters, lose weight and get quite bad hand tremors, feeling very cold and trembly all day and weak. I looked so unwell and pale, and couldnt walk far before feeling spaced out and dizzy. My heart would pound at the slightest movement and my head always filled with blood if i bent over - my heart pounding in my head and visisble at the edge of my vision. I went from one Endo to another as all assumed it was my thyroid going overactive. Eventually this was ruled out - although my GPs still suspect it could have had some responsibility. My liver function went weird - possibly due to my body having to fight some virus. I found pots on the web one day and my doctor was quick to agree.

i get sudden periods of profound fatigue and weakness - whre i can barely hold up my head for a period of time - but no where near as profound as your experiences. best wishes.

when i was searching for answers for some time, i did see a few naturopaths - one said it was my thyroidand gave me a herb that knocked me for six for two weeks, the second said i had reactive hypoglycemia and suggested i stop eating all high carb foods which did seem to help initially. The last was the best - and admitted he had no idea, but gave me valerian for my symptoms and another herb for energy - this was quite beneficial.

My GP told me that the TTT is a definitive test for POTS, but i was reading a few people here had trouble getting diagnosed with this - and that it took a few goes to get diagnosed - primarily because they were having better days during testing.

i used to get quite anxious when my symptoms were bad and i my whole body would tremble and id get plaps and dizziness every time i stood. Im much improved now, but mornings are always the worst until ive eaqten, then i feel better for about two hours, then crap until lunch then much improved. I thought the TTT was more definitive than what people here are saying. What happens if you book in and have a good day and they test you and it doesnt show up?

i think pots can be so debilitating. For me, i was a fit and what i assumed to be quite healthy individual who had very slight symptoms, then one day it just came on - I was so dizzy for months that i couldnt really do anything. My girlfriend was so supportive, but i knew it was awkward when she wanted to go out and i would come along by forcing myself and i would be so weak and dizzy that i thought i was going to pass out everywhere, and my heart would pound in my head, or i would be sitting there at a bar trembling, weak and spaced out and unable to really participate in a conversation as it was like i was ten seconds behind everyone. One day in a mall an old 80year old man saw me and let me take his seat - it was almost like my last fibre of pride broke at that point, Thankfully, i have improved enough to be able to work, and once i get through the first rough four or five hours of the day, can participate in most social things now and not feel ten minutes behind or so weak i am going to die.

i must say that i was quite depressed when every doctor i saw for 7 months told me i was suffering purely a psychological illness and i was the only person who really believed otherwise. It is very disheartening to wait 17 hours in hospital only to be told you have 'anxiety'. I do get anxious from time to time - or more appropriately fidgety when im standing or sitting for too long, but the depression i met with was the result of medical advice i received or lack of.