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Mine speeds up when I breath in and slows when I breath out - the change seems dramatic, but I believe it is normal... Well, no doctor has ever told me otherwise.

Thanks everyone for your posts. Firstly, let me say, that I don't normally drink alcohol - it just happened to be a celebration, and I followed the guidelines of 1 standard drink per hour, along with food and lots of water. I was feeling a little happy, but definately not drunk - anyhow the breathlyser showed I was 3 times over the limit!!! When for a normal person, I should have been under the legal limit. I also realise that you shouldn't drink on medication - but hey, you've got to live as well... Maybe I didn't feel the effects of alcohol as it was over a long period (about 6 hours). Low blood volume may account for it, as I stopped all of the blood volumising meds the week prior, as I was having too many side effects. On the advice of my neurologist I have been adjusting the levels of the medications, but as it was a busy weekend for me, I couldn't risk the side effects of the Mestinon, Florinef or Sodium Chloride, so stopped it completely, and was feeling quite lightheaded even before having a couple of drinks. My defence lawyer doesn't know about POTS, however the neurologist and other doctors are talking to her about it, as they think it is highly likely my blood volume was low, and therefore, although ignorance is not an excuse, I was unaware that stopping my meds could have such a huge effect, on top of that I am guessing the alcohol would have dehydrated me, making it worse. Of course I still kept taking the beta blockers - I can't spend 4 hours without taking one of those! Anyway, it was a stupid mistake on my part - but I know now how much alcohol effects me. Luckily I didn't drive, but was caught getting stuff out of my car, which to the police is as good as DUI - anyway, the lawyer is doing her best to comprehend what is going on with my body, and using that as part of the defence cause, with statements from the neurologist and others. The case keeps getting adjourned, so I don't know yet what the outcome will be - anyway, wish me luck. And the silver lining for me is - don't be a fool, and think you can act like everyone else! Don't drink, and especially, if you have stay well away from your car. Sorry, also, there was only a breathilyser test, no blood test - I should have requested one at the time, but as I have never had a run in with the police, I didn't, and still don't know the procedure...

Thanks for that. I had a feeling it may be related, there seems to be no other cause for it. I guess the doctors still don't know all the symptoms yet.

Just a quick question. As many of you know, I was recently charged with drink driving, even though I wasn't driving at the time. On the breathaliser I blew a lot higher than I thought I would have done, considering the amount I had to drink - I think it should have been lower. Does anyone know if any of the medications used to treat POTS can give a false reading on the breathaliser (i.e. Increased ethanol in the breath). I know that not eating for a couple of days can increase the reading - was wondering if medications may do the same thing? Just a thought....

I seem to wake up every morning with flu like symptoms - headache, runny nose, sneezing etc - this has been going on for over a year. Does anyone else with POTS experience this?

Hi Vanessa, It was only last week that I wanted to give up. Everything and everyone I treasure is/are slowing being taken away from me. Some of it is my fault, some of it isn't, and a lot of it is directly related to having this **** POTS. I too want my old life back, but I can't see that happening anytime soon. So, I am taking the advice from other people in this forum, and trying to take pleasure in the things that I can do. Although my partner is also concerned about the mounting medical bills along with the constant trips to the chemist for prescriptions, and they add up as well. I tried the other day to pretend I didn't have POTS and didn't take any meds at all, and tried not to think about it, but I ended up not being able to get out of bed for 2 days - so that's not a solution. I wish I could offer more advice, all I can say is that these feelings will pass, and there WILL come a time where you can enjoy the things you used to do. My thoughts are with you.

Thanks Pers, I know exactly what you mean. Before POTS, I too was working full time, and also doing a full time dual degree at the Uni of the Sunshine Coast. Because of POTS, I had to cut down on the hours I work, and also have to defer every other semister, as the work load is far too great. I also used to love to party, but can't do it anymore, it takes at least a week to recover. It's not worth it, and most of the time I just can't be bothered to go anywhere - once I get home from work, I am truly exhusted. I used to do a lot of weight lifting, and loved it, but can't do it now, as I faint in the gym, and have been banned. And know it's too risky to do it at home with no-one else around, just in case something happens. I took up the pipes, as it's something I always wanted to do, but is not good for POTS, as you have to stand to play them, and also the pressure needed to play them is huge - most people, even athletic people can't get a sound out of them - it's a lot like Valsalva. My pipe major knows about my POTS, and if I feel faint during a parade, we have a special movement were I move out of the formation, so as to avoid fainting. These last few weeks have been extremely trying - Apart from what has been going on - I've been having 'full faints', were I just black out completely. Severly blurred vision, and have spent numerous days in bed, and finding it extremely hard to muster the energy to even get up to go to the loo. I'm having great problems retaining fluids, and can't tolerate the florinef, mestinon or sodium chloride tablets, so when I see the Neurologist next week, I'm going to ask about IV treatment, and maybe even oxygen - I'm guessing the occasional treatment, even if only once or twice a week, should help avoid the fainting. Having POTS is hard - not many people understand, even my partner has issues with it, and thinks I am being lazy, as I look well. I hate being like this, but for now, thats how life is. I believe in Karma, and must have done something to deserve this - I'm not sure what it was - there are things I have done in my life that I regret, but I have never hurt another person that I can think of. Anyway, for now, I'm trying to keep myself relaxed, and keep my mind either clear or occupied, and trying not to dwell on my problems, as that seems to make the POTS worse.

Thank you everyone - you were all so right. 1. COURT CASE - My solicitor is adjorning it for 4 weeks due to many reasons, and believes a little letter to the magistrate out of court will get all the charges dropped. 2. BAGPIPES - The manufacturer is fixing them free of charge. 3. FAMILY - Well, I haven't sorted that out yet, I'm still not quite right, and to be honest I am ignoring all phone calls etc. I've been so, so, so stressed these last couple of weeks, that I contemplated you know what - but things are really looking up. I'm just going to try and avoid stress for the time being, meditate and medicate, and try to enjoy as many things as possible. I've just got to remember that I'm not the only person in this POTSY boat - I guess we will all have good and bad days. Thanks to everyone who replied to my post - it really helped me.

Yes, I do to, isn't that strange - I wonder why?

I understand completely where you are coming from - I posted a similar topic a few days ago, and got lots of support from everyone on here. I have spent the last 3 days in bed - a complete misery - won't answer the phone or the door, just sit and wallow in my own self pity. It's so easy to do. There are no answers. Some days, weeks, months are crappy, and some are not. Doctors don't always understand, as they can't feel what we are going through - sure they can see visable signs, and high HR, and low BP etc, but they can only speculate on how it feels. And when you are going through it day after day, week after week, it can become very trying indeed. Just take each day as it comes and try to find something to look forward to, or set a small goal for yourself, and try and get as close as you can to it. Even if it's attempting to wash the dog or something. Baby steps. If you are completely bed-bound at the moment, try even writing something, or sketching - I find that helps me take my mind away from things, if only for a brief moment. I was recently so depressed, that I was considering you know what, but have realised that live is for living, we have to find joy in the small things we can do. And take hope that one day soon, the doctors will be able to tailor a programme that suits our needs and lets us get on with 'normal' lives. My thoughts are with you during this dark time. Please look after yourself, and remember that although it seems like it now, you won't feel this way forever.

I'm only new to this forum, and have had some great advice from all of you, but today, I am so severly depressed, I just want to give in. If anyone has read my posts, you will see I've had the most awful month ever. Apart from the daily grind of living with POTS, and finding it hard to get up in morning, hard to focus on anything in the morning, erratic heatbeats at the drop of a hat, and fainting without any notice; I've also had a POTS related outburst directed towards my family - which is still unreconciled, and from my first post is something that most of us have experienced. I've been charged for drunk driving, for just getting something out of my car and walking home - which will then lead to me loose my licence as I can't afford to go to trial, so am forced to plead guilty, and of course will then loose my job, and I can't get anyone to see reason; and on top of that, one of the only things that brought me joy was being able to play the great highland bagpipe, which cost me over $10,000.00 and has this week broken, and I don't have the money to fix it. Someone kicked in the front of my car, and someone tried to mug me! I have to go to court to try and defend myself on Monday for walking home! However, due to mandatory sentancing, I will have to plead guilty and loose my licence. I just don't know where to turn. None of my family live anywhere near me (in fact they live in different countries), my only friends are my work colleagues, and after I get fired for not being able to drive, I'll soon loose them. I live in a house that I won't be able to afford on the dole. I'm sorry guys, just have to let it out. I'm so fed up. Maybe I'll wake up in the morning, blurry and slow as usual, and things may seem better, but I somehow doubt it. Is there any hope anywhere???

I too often have these types of symptoms whilst sitting. I get sweaty, clammy, pale, dizzy etc. My friends often comment that I am more like a woman with menopause than a 28 yr old male. The symptoms seem to be many, and it is a wonder how we can work etc - we just have to soldier on, until we find the solution.

Thanks Evie, I'm trying to get a letter from the neurologist stating that I need to keep my fluid levels up - and I don't think it's fair that the police can refuse to give you water - I'm sure it wouldn't effect the breath test in any way - well, maybe to my advantage - but surely, if someone clearly stated they had a medical condition and needed water, you would give it to them. Especially with all the stress of not knowing what was going on etc, I really needed some water. I'm also getting references from the people I was with stating that I had no intention of driving - I told everyone I was with I was going to walk. Along with that I will make an appoitment to see the local MP - I'm sure they cannot override a magistrates disision, but if I explain to her my medical condition, yet I still hold a full time job and am a full time uni student doing a double degree, and also give up all my free time to play for the local pipe band (which is unpaid - and perform at local events), she may be able to give me some type of reference, or a letter or something - I don't know. Everything is just so messed up right now, I hope you're right, and I'm using up my bad luck before court. Thanks for your support.

If I stop taking Propranalol, mine sits on about 120 resting all day, of course it shoots up higher if I stand or walk. Actually I've been banned from a couple of gyms here, as they don't want the risk. You know when you join a new gym and have to have the fitness test so that they can do up a programme for you - they see my heart rate go over 200 bpm, and won't let me join - one gym did let me join, but banned me after I fainted a couple of times - which is a shame, as I used to love doing weight training. The propranalol controls it most of the time now, although if I am a bit stressed or exert myself too much, it starts to play up.

Hi Evie, Thanks again for the advise. There is a so-called chance that they may dismiss the charges - as the law states I am innocent until proven guilty - the only way I can have the charges dismissed are if the police documents are incorrect or incomplete. It's silly really, when you are innocent until proven guilty, but you have to plead guilty otherwise go to trial - and I just can't afford that. Especially if I end up loosing, as I will loose my licence for God knows how long, and will not be able to work, unless I catch taxi's - obviously with POTS I can't ride a bike to work, even though it's not that far - but in the Queensland Summer? As I am still unclear of what they are intending on charging me with, all I can do is state the facts. My solicitor seems good, although has a big workload - but she keeps telling me she will get the best possible outcome for me. She thinks the best scenario if I plead guilty with strong mitigating circumstances, I might be disqualified for 6-7 months, but may have a shot at getting a work licence. Not the best outcome when I wasn't doing anything - but apparently it's illegal to be anywhere near your car with the keys as you are classed as being in control of the vehicle. Also, you would not believe that my bagpipes broke today as well, they won't be fixed in time for all my Xmas engagements etc - I must have done something bad somewhere to deserve all thats being dished my way lately. Thank God that I have this discussion forum with like minded people to help me through it all... By they way, there were no Blood Tests done.

I find my dizziness/light-headedness is worse in places with flourescent lighting, and you have to stand still for any period (like post offices, banks, esculators (sp?) in malls etc). I've been like that since I was a kid, and have learned now to always make sure there is something (or someone) nearby to steady myself - if I don't have a a full faint, and that's more embarressing, than just sitting on the floor at the queue in the post office...

Hi, I also get terrible blurred vision, generally only for a couple of hours in the morning - so blurred that I can't read words on a computer screen etc. I have reading glasses, but they don't seem to help for those couple of hours.

I also get tachy in any position, sitting, standing, laying down - standing seems to be more likely to bring it on, but as I said I often get it sitting and laying as well. So, you're not alone.

Exactly the same happened to me - I took it for 3 weeks and was having to have days off work and was in bed almost in tears with the pain in my head - like migraines. I was in absolute agony. I believe it works well for people that don't get this side effect, but I know I'll never take it again.

I know exactly what you mean - I have the same thing, sometimes in a finger or a leg, or most frequently and eyelid. It's annoying, but I've never done anything about it. I find I have enough to deal with just having POTS, thats why I refuse to have a diabetes test or cholestorol test, because I'm sure it would only give me something else to worry about.... I'd be interested to see if a change in your diet helps the twitching though - If it works for you, I might give it a go. Good luck with it.

Thanks Evie, Yes, It is rediculous. I wasn't driving, was completely honest with the police about what I was doing etc, although they weren't concerned at all, all the wanted to do was get me to the station and test me there. Apart from the fact they haven't clearly told me what I have been charged with (the charge sheet is missing the actual offence, it just says 'Attempting to operation a motor vehicle whilst'.) So I gather they add in what they want after I'd gone. So far they still haven't given a copy to my solicitor (A week since she asked for it). The sergent was a complete a$%^hole. When he asked if I had any medical conditions. I said 'Yes, that's why I've been asking for water'. He asked what I had, I said 'POTS or Postural Orthostatic Tachycardia Syndrome', He then barked 'IN LAYMENS TERMS', I said, 'Well, mainly it means I intolorence to standing', He then barked again 'I SAID IN LAYMENS TERMS', I said 'I have trouble standing for too long, as the blood settles in my legs and gut and I faint'. When he asked me if I had taken any medications during the day, I said YES, and started to slowly tell him, and spelling them for him, thinking he was typing it into a computer, as you never know some of them may effect the breath test (well that's what I thought at the time). He said 'For F**k sake, hurry up', so he obviously wasn't really taking note of them, and probably thought I was being smart for spelling them. I said, 'I'm sorry, I thought you were typing them into the computer'. He completely ignored me. They also wouldn't take me home, or call a cab for me, they put me outside, locked all the doors and turned the lights off. It's a complete farse. And unfortunately, I will have to plead guilty and loose my licence or go to trial and pay thousands of dollars to solicitors to defend me. I heard they the police have to generate a certain amount of revenue, and many people have told me that it is a myth, although I was told by a detective a couple of years ago that they do have a quota, and are expected to generate a certain amount of revenue in fines etc per month. I am really starting to think it is true. Why arrest and charge someone (without telling them what they are charged with), when they are clearly not doing anything wrong, and hey ignore the murderers, rapists and drug dealers that are around?? I've lost all faith in the Australian Police Service and the Justice system, as you have to plead guilty unless you can afford to go to trial, and the sentances are mandatory - the magistrate has no real control over the penalties - it's a set formula, and you loose your licence for that period and have to pay a fine of a certain amount. It really does **** - and with all the trouble I've had with POTS lately, I really can't be bothered. Something good better come along soon, 'cause I've just about had enough of my life. I'm tired and crabby, and just want to run away were no one can bother me.

I'm in Australia, here you can just buy them over the counter at a pharmacy, without a prescription. Just ask for Sodium Chloride tablets. I try to take them, but they can make you very nausious (sp?), and even make you vomit. But if you don't vomit, the nausea only lasts for about 30 minutes.

Thanks for your reply, I'm in Queensland, Australia. I know they are strict here on drink driving, but thought it was obvious what I was doing - when the police pulled me up, the car was locked and I was walking away from it - I was mainly only getting my water bottle from the car for the walk home. I didn't even know they were police as it was an unmarked car, and they were in plain clothes. So, was just acting normally, it's not like I was acting suspiciously. Anyway, I am charged with being in charge of a motor vehicle whilst under the influence of alcohol. If I am convicted, and completely loose my licence (a work licence would be fine), even though I should be able to keep my full open licence, as I didn't do anything wrong - I didn't drive, I didn't hurt anyone - but that won't happen, there is nothing in the legislation for that - if you are charged, according to the law you MUST be disqualified from driving, and MUST pay a fine to the court, although you may be able to get a restricted licence for work purposes only. As I mentioned, if I don't get a work licence, I will loose my job, and won't be able to attend university until after the disqualification period. I may as well join become a monk! At least then I would have a purpose.

Can you believe this? I have been charged with Drink Driving - even though I wasn't driving!!! Apparently in Queensland you can be charged for Drink Driving just for having your car keys on you. I had been at an event with friends/colleagues, drank no more than anyone else, except I have several bottles of water inbetween (don't want to get too dehydrated) but decided that I felt a little tipsy (nothing serious, not slurring or wobbling etc), so would stroll home as it was a nice evening. Went to my car to get my belongings, had locked the car and was walking away from it when the police pulled up next to me demanding a breath sample. I told them I was walking home (which was only about a 7 minute walk) - which would have been clear to anyone. They took the sample, said I was over the limit of 0.05, and took me to the police station for another breath test. I had to wait for 2 hours - I told them I had POTS, and needed water and also needed my medication - they refused to let me have anything. Did the test, gave me a court date, and told me I could expect to loose my licence for up to 9 months, but may be able to apply to get a restricted work licence, and I would expect to pay a fine of around $1000.00. I am just shocked, not only at the stupid law, but also the fact they can deny me water and my medications. I've had to pay almost $3,000.00 for a solicitor, but that doesn't guarantee I'll keep my licence, and on top of that there is the fine I will get from the court. If I loose the court case, I will also loose my job, won't be able to attend Uni lectures or tutorials etc. Not only is POTS slowly taking things away from my life, if I loose this court case, I'll have no life! - all for deciding to walk home. It just makes me sick. I can't sleep, I can't eat. So, a warning to anyone coming to QLD, if you have a couple of drinks, stay well away from your car! Just so you know, I have never had any criminal convictions, not even a parking ticket! I'd never even been in a police station - and with the uncertainty of what they were doing, you can imagine how my tachy was!.

Hi Guys, I've posted a few messages on here saying I was having problems with fluid intake - i.e. drinking a LOT, but not passing much, but still having low BP and the 'faint' feeling that goes with it. I have also said I couldn't stomach Sodium Chloride tablets as they make me vomit - well I think they make a lot of people vomit. I find that I can take them (fingers crossed) no problems at all with V8 Juice - it seems to mask the taste of the salt. I took 3 x 600mg tablet before bed 2 days in a row, and I wake up feeling much better - I don't feel so awful now when I wake up.