ramakentesh

Interestingly, lucky for me the receptionist called and cancelled the appointment and its now for the week after i get back. Thanks for all reviewing and replying to my post. I too am very cold sensitive and feel better in terms of symptoms when its warmer here (a hot day of 38C was too much for everyone i knew, but i felt quite well and even went out and washed the car - impossible during winter). Do people all find that their dizziness and other symptoms are worst in the mornings? I fell tired in the mornings and dizzy until i have breakfast, then two hours later i feel bad again until about 2pm and then im steadily improving as the day progresses - late afternoon and nighttime im the best.

Sorry guys, i was just wondering a few more things. Firstly, does anyone else get periods when their symptoms are bad where they dont sleep properly, like they sleep lightly and feel uncomfortable or wired all night? Im also booked in for the TTT two days before i leave for a trip overseas - ive been told that it really messes with you and that it aggrevates your symptoms. SHould i postpone or get it over with. Also i get lightheaded when i stretch my head back and my head fills with blood when i lean forward and i can feel my heart pounding when i do that. Lastly, in many articles it says that people with pots get better after around 52 months - does this sound right?? Does anyone else feel cold all the time?

i find that a tablet of propanolol works wonder for a bad tachy attack - any less and its not enough. I only take them currently on my bad days as they tend to effect my sleeping.

thanks everyone. Ive been avodiing my trigger which are alcohol, caffiene (i am highly sensitive to this and even a sip makes me instantly dizzy), vitamin c and citric acid, and sometimes chilli and mushrooms.

The overlapping is the problem because i get a lot of those from POTS. I wonder how many people have been diagnosed with CFS when they actually have POTS?

sorry to post yet again - but what foods have people noticed trigger their symptoms?

Does anyone know where Pots ends and CFS begins in terms of symptoms? I do get fatigue most days = some days i can barely hold my eyes open or keep my head up for periods - but its not like i cant get out of bed at all all day or anything like that and its only when my symptoms are bad.

how long have you had full blown pots? I was worse late last year and have gradually over many months improved - still no where near normal, but i getting there slowly. I lost a lot of weight and was on a high high rice diet to try and out some back on - slowly but surely the betablockers and rice helped me avoid adrenaline burning the crap out of my fat stores. My advise is that you will eventually improve - it took me a full seven months before i noticed an improvement - but it will come. I do get a dull ache in my shins - like they are hollow or minicramping - its very strange. I took a multivite once and they tingled - in my imagination it was like they lacked something that the vitamins restored and i could feel them recharging - but the aches were back again a week later. Also if i swing my arm around quickly it aches with mini-cramps.

my neck ones are but i have a few thyroid nodules that might have caused that.

interesting. Im sure they are symptoms related as they always appear after a symptomatic episode.

Does anyone else get bad vitreous floaters? I started getting them when i first started to get slight symptoms. When my symptoms went into overload they got so bad that it was like looking through a curtain. The eye doctor was confused by them - they are normal, but mine were like what youd expect with someone with glaucoma - which incidently brings me to my next point. Since my symptoms started my eye pressure has gone from 16 to 19 (normal between 10 and 20). which is strange as well. Can anyone else relate?

On my bad nights i find it hard to sleep because of the tachy = my heart is pounding in my head and its quite annoying. After i take a betablocker i usually dose off, but feel dizzier and more tired in the morning than usual.

runnergirl - i have those same symptoms as well as trembling hands, dizziness and lightheadedness and vitreous floaters. For me i take one inderal Propranolol on my bad nights if i cant sleep or i feel anxious or panicy. This makes my dizziness worse, but atleast it calms me down. i was so hyper originally that it took three doctors and four months to determine whether it was my thyroid doing it - but eventually it turned out that it was pots. I also use valerian herb - which is calming without making me drowsy. (strange whgen it makes everyone else drowsy)

Ive found that caffiene makes me more spaced out and dizzy rather than less = i get very cold and my arms get all cold and prickly - and when you have to get a blood test and they cant find a vein its frustrating

i find that the lightheadedness and dizziness is worst when im walking under neon lights at the supermarket or something like that - and i have much more trouble focusing. This is when my symptoms are bad - other times its no problem.

Maybe this is part of the over sympathetic nervous system that is a result of pots

yes! I have these problems - my doctor told me that it is the same system whether its overactive thyroid or pots - in both cases your beta nervous system will be overactive causing hand tremors, fidgeting, anxiety and all that.

Yes they are reviewing the Thryoid levels because they believe that a TSH above 2.0 generally indicates an underactive thyroid when at the moment TSH levels up to 5.0 which can be very underactive are accepted as 'normal' - as far as im aware they havent reviewed the tsh lower leve - it will still be 0.3 or 0.5. My TSH was around 0.6 at its lowest from a range of 0.3-5.0 so i was never treated, but my TSH is back to normal now - 1.25 and ive still got the same symptoms. My doctor told me that hand tremors were common with POTS as there is an overcompensating beta sympathetic system or something like that - the hand tremor in both hyperthyroid conditions and POTS apparently comes from a similar mechanism - this overactivity of the beta nervous system.

Well since my mother had an overactive thyroid, the hand tremor was similar to that. But i was/am cold all the time rather than hot and sweaty like with an overactive thyroid. I also had thyroid nodules, but my TSH was never below 0.5 and my t4 was only high on two of the five occassions it was tested, and then only slightly. My thyroid scan was normal. Im starting to put weight on again. My strategy has been to avoid processed foods, and concentrate on eating vegies, fruits and lots of fish which seems to help. When i lost weight i lost it the same way - my upper arms and legs just dropped off - and my face looked so skinny and sallow - i went from 78Kg to 66 in about a month or so. My arms and legs are still skinny now, but my stomackh is comign back. In short, my main symptoms are palps, tremors, dizziness, lightheadedness, balancing problems on standing worse inthe mornings, vitreous floaters, and a whole load of other stuff.

Has anyone else been told that their symptoms seem very much like an overactive thyroid? My tachycardia and my trembling hands were so similar and when i was losing lots of weight when this was at its worst, they thought i had an overactive thyroid. But my levels were only slightly abnormal so it was ruled out by a professor. This guy even commented on how similar my body was acting to an overactive thyroid. Is this a common thing? Also, my worst symptoms is dizziness - when i sit sometimes, but especially when im standing in the morning or walking around - it get better usually as they day goes on, then at night i get the cold hands and feet and palps = my heart is racing while i lie in bed some nights. The other thing is when i stand and i focus on nothign with my eyes - just sort of stare blankly, i can actually see my heart beating in my eyes - i can hear it in my head too - at night or when im standing or if i get stressed (i have much less stress tolerance now)-----------

i too get very tired periods where i can barely keep my eyes open and also no matter how long i sleep in on the weekend - after dragging myself outof bed every day for a week for work - i still feel really tired. Once ive eaten though im much better. My biggest tip for fighting that tired cant keep my eyes open feeling is an apple or orange juice.

Dont tell me you have slightly elevated bilirubin and Alkaline Phosphate as well?? Mine is unexplained - but is assumed to be the reult of a virus that i picked up and that may have triggered my POTS

indeed! Id almost argue that caffiene brought my POTS on - well that and excessive exercise for a week before hand! But when i used to get the slight symptoms i got at the start i always just put it down to caffiene intolerance as it always made things worse for me - worse tremors, weaker body, but fidgety and could keep still. After i got full blown, i had a sip of weak tea and i was wired and anxious for hours. its a no go for me.

yeah im feeling much better, but it was a strange reaction - primarily because it came on a day after the actual event. I felt so spaced out and weird, and all my symptoms were really enhanced. Thanks for all your replies. During the event i did feel slightly more disorientated after one drink, but after another i felt great. On the way home apparently my body was trembling -although i dont remember this, and then the next night it all came on. I now know what to chiefly avoid. I was also wondering whether people get these tired moments every day where they can barely keep their head up?

I recently attended a party for a friend who is moving overseas and with0out really thinking for once, i consumed a large amount of alcohol. This was pretty much the first time ive even touched alcohol in nine months. I awoke the next day with a bad hangover, but i recovered from this by that evening. But at around 11:30 it as if my body went into overload. My heart began to pound, my skin was cold and clammy to touch, my usual tremors were ten times worse - my whole body was shaking, I was anxious and out-of-it, double vision, pale, my usual standing dizziness was much worse and for the next day and a half i couldnt think straight and my sleep was very bad - light and full of dreams and my heart rate was too high - making it uncomfortable to lie down. Can anyone relate a similar experience? Im more confused than ever.