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I was on 200mg/day - along with 120mg of Mestinon and 320mg of Propranalol, along with a couple of mgs of Xanax as required. All of these drugs can have horrible side effects on some people - and I guess I am succeptable (sp?) to a lot of them. I have since reduced the Propranalol to 200-240mg/day, and although I have tachy most of the day (around 90 sitting, and about 140-150 standing) - the side effects of the Propranalol are a lot less. I am not keen to try the florinef again, even at a lower dose - the first time scared the **** out of me. And needless to say, I won't take the Mestinon - especially the embarrassing situation I had a work (were I literally crapped myself - with no warning!). And that happened more than once, at least only once at work - the other times were at home, where I could discretely go the bathroom, clean up and have a shower. But now I have the issue of trying to find out what is up with my fluid intake (so much going in, hardly anything coming out), and how to increase my BP so I am not so faint feeling all the time. God, I wish for the days when I didn't have this illness, and went to the gym every day, and had lots of hobbies - now all I do is work (and unfortnately my othostatic intolorence is getting noticed more and more), and sleep (I can't believe that I now sleep for over 12 hours of the day!). The Neurologist and Cardioligist have suggested ablation and a pacemaker - I hear there are pros and cons about this - after all it is only treating a symptom and not the cause, but surely it would help regulate the tachy and BP? Any thoughts? There was also mention of Adrenilin (sp?) to try and shock my heart into doing the right thing??? Anyone heard of this?

Hi Pers, I have taken Florinef in the past, along with giving me the tremors it also gave me a migraine type headache - and I was very irritable - everything seemed either overwhelming, or I felt like I had missed the punch line if you know you what I mean - Either felt like I was going to scream, or had a feeling that would be similar to everyone knowing a joke and you being the only person not getting it - a bit behind the 8 ball I guess you would call it. I've stopped taking it, and of course my BP has dropped a **** of a lot - I'm now having full syncope episodes and a problem with fluid intake (i.e. can't get enough). And I also posted a topic on here about emotional outbursts, which may or may not have been a result of the traces of Florinef left - I don't know - just after reading your post, it may be related. I prefer to have these symptoms then experience what the Florinef did to me - I guess some of us a just sensitive to the medications.... I can completely sympathise with what you have been going through. I seemed to have developed lately a real sensitivity to medications - even Zoloft was intolarable - I couldn't sleep, and was grinding my teeth. Mestinon really gave me bad stomach problems - as in not being able to control myself - which is no good. I'm now just down to the bare essentials - Propranalol and Xanax (which I would prefer not to take). But they aren't working adequitely. Sodium Chloride tablets make me vomit uncontrollably. I'm also taking a bit more of a holistic approach, to try and keep myself calm, a bit of aromatherepy, daily meditation etc. I'm trying to find the right combination of medications and lifestyle that might help me to manage this illness - most of the time anyway. I'll keep posting if - you never know, I might come up with the miracle cure...

Hi, I had a rather big faint yesterday - It was Melbourne Cup Day here - and I had a couple of glasses of champagne with friends - (I know - no alcohol) nothing huge, was still completely sober, drove home, noticed the time was 7.30pm, and no-one else was home, and was trying to find the worming tablets for my dog - I was bending down looking in cupboards and drawers etc. I then tried the cupboard that we keep things like Panadol etc in, which you need to stand on tippy-toes to look in, I was doing that and ferretting through the cupboard - with my arms in the air, got the ringing in my ears, but ignored it, thinking it would only be a couple of seconds until I found the tablets, the next thing I know I am being woken up by my flatmate, who got home at 8.00pm, as I was passed out cold on the floor - I have no idea how long I was there for - I'm guessing about 10 mins. Luckily, he undertands - he is an insulan (sp?) dependant diabetic, and often has 'episodes'. So there you go, this time I only got a couple of seconds warning - I already had tachy, as you would expect from a couple of drinks. It's probably my own fault - but, then, you should be able to enjoy a couple of drinks on Melbourne Cup Day with friends, shouldn't you???

I get a ringing in my ears, and then everything goes white - next thing I know, I'm on the ground.

Is the IV a DIY thing - I.E., do you insert a canula yourself when needed - or do you have one there all the time, or go to the doctor when needed? Or what? How does it work?

My green tea doesn't have caffine in it - I don't have any caffine in my diet at all.

No, IV's have never been mentioned - should I bring it up with my doctor?

Hi, I was wondering if anyone has any advice on how to increase my fluid intake - the amount I drink just doesn't seem to be doing it: Currently, I have a minimum of 4 litres of water per day (usually around 5), about 1.5 litres of fresh juice and about 8 cups of green tea - I don't know about anyone else, but I can't physically drink much more - however, I still feel dehydrated. I have a high sodium diet - am vegetarian - don't eat fatty meals - do moderate exercise. My doctor tells me to drink more - but I just can't - and after all that fluid, I only pee twice a day!!! I can't take sodium tablets as they make me vomit violently, and I also can't tolerate florinef - it gives me a nasty migraine. Any ideas anyone??

Hi Hopeful-Girl, It sounds as though you are echoing my problems - as horrible as it sounds, I am glad I am not the only one - although I wouldn't wish it on anyone. It's hard to explain to people what POTS is, it's not like diabetes etc where people know a fair bit about it - POTS is misunderstood, and I often get accused of being lazy, aloof, easily-distracted with unpredictable moods etc - I think most of us with POTS have the same trouble. It seems to be the same as Chronic Fatigue Syndrome - I have friends that think it is just a fancy way of saying you're lazy. But then ADHD was misunderstood not so long ago, and people thought it was just an excuse to have have naughty children - now people seem to understand that it is a REAL thing. One day I guess people will understand POTS and CFS. Anyway, this forum has been a godsend for me - to be able to talk to so many other people in the same boat is great.

Thanks Evie, It sounds like you've been through what I'm going through with the family not understanding - I don't even really understand, so how can they? You've helped me feel a bit better about myself, so thank you.

Thank you everyone for your support, it's encouraging to know that there may be solution somewhere. Yes, playing a wind instrument is very much like Valsalva - and especially the bagpipes that need a lot of pressure, probably more than any other wind instrument to play. I would love to play every day, but can't - I have a smaller set which I can play sitting down, and don't have so many problems with those - it's the big ones (Great Highland Bagpipes), that give me lightheadedness etc. I take precauctions before performing in public though - making sure I'm REALLY hydrated, and find an extra dose of Propranalol helps to stop my heart racing and my BP from dropping drastically. Anyhow, I'm starting to feel a lot better after my episode, thanks to the replies - I don't feel like such a freak now.

Thanks, It's good to know I'm not the only one who has suffered with this. My problem is that from what I gather it may be the Vasculitis of the Brain that has triggered the POTS, and from the research I have done and from what my doctors tell me Vasculits has these symptoms, but unfortunately, I was very sensitive to the chemicals in the medication they gave me for that, so voluntarily stopped taking them. The POTS is the main problem, as it affects my everyday life, the Vasculitis only every so often (if that is what is causing these outbursts). It's hard though to explain this uncontrollable behaviour to someone who doesn't seem to understand (like my family). I lead a fairly normal life for a 28 yo, however get tired very easily, and unfortunately faint a LOT, but I have done that since being a child, and back then doctors didn't really know what the cause was, everything seemed normal, apart from a slightly fast heart rate. But as I generally now only see my family for a few hours at a time, they can't understand the trouble I have on a day-to-day basis, like the laboursome task of getting out of bed in the morning - I have to do it very slowly to avoid fainting. Another issue I notice, which really bugs me is that I was, and to a certain degree still am a good bagpiper, but that plays severe havoc with the POTS - having to stand to long periods, whilst blowing large volumes of air into a small tube constantly - but I refuse to give up! Anyway, the neurologist has sent a tonne of my blood to be anylised to see if there is a genetic problem that may be easily curable if they can find it. If not, there are talks of ablation and pace-makers or treatment with adrenaline and all sorts - arrrgghh. Anyway, I feel some relief knowing that I am not along with this outburst problem - any hints on how to explain it to the family???

Thanks for the info. I am male, 28 y/o. I was told by my neurologist that these outbursts are a symptom in people with nervious system disorders. They are never violent (in that I hit people) - but leave me feeling awful for days afterward. At least I'm in no way violent. But, unfortunately managed to completely make an arse of myself by being extremely rude and irrational to my father and his partner over the weekend. They are still trying to find the cause for my POTS, my MRI shows 'hyperintensities', and mentions Vasculitis as a probable cause for ischeamic white matter changes - I'm completely lost with all of this. Well, there, you go, I just did a quick search in google which shows that Vasculitis of the brain can have behavioural disturbances etc. Maybe it's that and not the POTS. I am sure the Propranalol doesn't help either, but without that dosage my resting rate is always well over 100 bpm, which gets uncomfortable after several days, weeks etc... Florinef gives me an unbarable migraine, Mestinon REALLY upsets my stomach, and the Sodium tabs just make me vomit uncontrollably. Anyhow, I have a check up again with the Neurologist in a few weeks - I'll let you know how I go. Thanks.

Hi, I've been diagnosed with POTS for over a year now, and have noticed an increase in what they call 'Uncontrollable Outbursts', during which, I either laugh, cry, or get quite rude and abusive to people close to me. As mentioned, they are uncontrollable - does anyone else suffer from these? Or, especially, have any type of 'cure' for them. I am taking 200mg of Propranalol per day along with 2mg of Xanax. SSRI's, Florinef, Mestinon and Sodium have been unsuccesful - bad reactions to all of them. Any info you can give would be greatly appreciated - these outbursts are ruining my life!!!