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I recently posted a post about 2 dear friends of mine passing away suddenly. Now, I have a very close friend whom has had a milignant brain tumor removed, however, the operation left her without the ability to speak, or perform fine motor skills. I can only wish it was me. I'm already damaged - she had her whole life in front of her, and she is reduced to asking for what she wants from a children't type picture book. I should be me. She doesn't deserve it. Oh, I'm so mad........ I just don't know who at!

BTW - It's my Birthday today! 29 today!

Hi Jackie, I'm soooo sorry to hear about your misfortunes. I had a similar problem - get the brochures from DINET - they helped me expain what POTS is. That's all I can offer I'm afraid. D

Hi Guys and Gals, It's been a long time since my last post. I've been diagnosed as being clinally depressed, and of course am no questioning my belief systems. I've two close friends pass away recently due to what they call 'SADS'. And I find myself wishing I could trade places with one of them - they deserve to live much more than I do. It's probably not the most positive thing to post, however, I find I am annoyed every time I wake up - I seem to be hoping that one day I won't wake up. And I have more problems to face (not all mine) - being Buddhist - I guess I must have to face these things. I have this awful POTS, however my mother seems to think it's a gift. It allows me to be more caring, artistic and intelligent. I just wish I could get rid of some of the liguering anxiety that hangs over my head. For one, I am sorry about a post/poll I posted about aliens - if you took offence, please don't, I would never make POTS or any Autonomic Nervious System a Disorder, a face that made it look like it was imaginary - I suffer the same as you. And second, I would like to apoloise to Michelle - I went a bit off about a topic we know about, and think it may have been the depression, as I don't have any of those feelings. I trust you will find it in yout big heart to forgive me - It's been a hard time.

This is deviating from the original topic - but how do you ask for it? I take a high dose of BB's, I've tried cutting down, but it's no use. I also take between 2 and 4mg of Xanax per day as well as 40mg of Prozac. I too have terriable trouble sleeping, but the doctors can't see why. From the med's I'm on, I should be feeling fairly drowsy all the time, but I don't at all. My doctor will prescribe immovaine, but then the pharmisist looks at me like I'm a junkie. I tried to prove to my doctor that these are very real, and on purpose stopped taking everything for 2 days and went and see him - my resting HR was 160, and my BP was very low (I can't remember the figures, but he was concerned). I know that I need something to help me sleep, I've tried Valerian (the Herbal stuff), warm milk, peanut butter, warm bath etc, nothing seems to work. I can't seem to convince anyone that my 'wiring' is wrong, and I am very 'on edge' all the time. I've also enquired about Klonopin, which the doctors agree would be worthwhile, however they aren't allowed to prescribe it unless I have epilepsy. What can I do? I know there are medications to help me, but the doctors either can't prescribe them, or the combinations look dodgy to the pharmisist, which makes me reluctant to get them....?

I've written many comments on my best little friend 'Chyna the Chocolate Chihuhua', but yesterday she could very well have saved my life. I had been out in the morning, and got home around noon - she greated me as normal, but kept running to the laundry room and barking and then coming back to me and then to the laundry room repeatadly. I assumed she was barking at the neighbours dog. I eventually got up to get to her, and he had cornered a 2 metre long (approx.) Brown Snake in the laundry room (One of the top 10 most deadly snakes in the world). I guess if it wasn't for Chyna - the snake would either have hidden in the laundry basket (with laundry in it), and I would have had a nasty surprise when I went to fold it, or it would have roamed the house. Either way, I could have ended up with a fatal bite - and so could she - for some reason, she knew to keep her distance, and although the snake was striking, she kept out of range - She just keeps amazing me! Luckily, the snake was right by the laundry ranch slider, which was unlocked, so I managed to open it with a very long broom handle, and then 'encourage' the snake outside. Just wanted to let you know how lucky I am for my little furry friend.

Wow, I would have to list it as the following: 1. To be able to fly 2. To be able to turn back time, and correct my mistakes 3. To be able to morph into something or someone else 4. To have magical powers like Harry Potter 5. To be able to make myself 'intangible' i.e. walk through walls But mostly, I just love to be able to fly!

I am sorry you are having this symptom - I am on the other side of the world, so it would cost an arm and leg to call me, however in the last 6 months or so, I am noticing that I am holding my breath involuntarily - it takes me a while to realise that I actually need to draw breath, and I am with you 100% on that fact that it is very, very scary. I worry that one day, I won't realise that I need to take a breath.... I'm discussing this with my neuro at the moment, however, it seems to be a symptom she is not aware of as yet. Anywho, please feel free to PM me, if you want. All the best, Daniel

Yeah, I get this also, I also get a 'phantom itch', that seems like it is coming from somewhere (say my wrist), but when I scratch it, it feels like I am way off target - the itch is actually in my hand - strange. My guess is that the autonomic nervious system is such in intergral part of our bodies, that dysautonomia can bring out the strangest feelings/sensations.

I am not a doctor, however these symptoms could be POTS. However there are numerous other illnesses that have similar symptoms. Asking your doctor for a Tilt Table Test (TTT), would be the first place to start - they can normally diagnose POTS there and then (In my experience anyway). If it is POTS, don't worry, it's not a death sentance - some common sense, and change of lifestyle (for me a radical change), can make the symptoms less problemlamatic. And, if it is POTS, you'll find this forum a useful tool for asking questions, venting etc. I wish you the best. Daniel

Ouch! Ouch! Ouch! I was at a wedding on Sunday, and as I was leaving, I got into the passenger side of the car, and was still talking to everyone standing by the car, and realised that there was something on my seat, so I lifted myself up, by grabbing the door frame, and at the same time someone slammed the door shut, without realising where my hand was - OMG, it hurt so much, and my fingers are all cut and bruised. I've taped my index and middle fingers, as they are the worst, in an effort to get them to heal quicker, as I have a bagpiping comp in a couple of weeks. I put them in ice as soon as I got home. Any hints on what to do to ease the bruising, and pain? I'm sure they aren't broken, just squashed! Thanks, Daniel

When I'm at work, I have reminders set in OUTLOOK that pop up and remind me to take my medication (as I'm at the computer most of the day). During the weekend I leave them on the kitchen bench (it's okay there are no kids in my house - however, I was going through a lot of Xanax recently, and the doctor was asking questions about how I could have taken so many, only to catch my now ex-flatmate taking them one day for fun). But I digress, when they are on the kitchen bench, I am bound to pass them several times during the day, which helps me remember when to take them.

Did the lights by any chance have a strobing effect? Or even a flicker (like flourescent lights do)? I believe flashing, strobing or flickering lights can make you feel a bit dissoritated.

What exactly is Klonopin? I have asked my drs about this, as I suffer terrible anxiety almost daily, it starts at about 3pm and lasts until about midnight - so far they have only been able to control it with Xanax (one at 3pm and one at 9pm), but I find Xanax is fairly short lasting, and have heard that Klonopin is longer lasting? Is that correct? Also, does it go by other names? As my drs haven't heard of it.

I too am sorry that you have to put up with this ignorance. I have been through the same things, from being told I am lazy, to that it's all in my head etc. Even recently my father wanted to come and see me, and I said 'Dad, I don't think it's a good idea at the moment, I really am not well', but he insisted, only to find me in bed, and pretty much unable to do anything. I made an effort to get up and make him a cup of coffee, and fainted in the kitchen - his response was 'Oh, that happens if you've been laying down for too long' - then he wanted to go out for lunch. When I told him that I literally could not dress myself in the state I'm in - let alone drive to a restaurant, sit up and eat. So one of my friends went with him instead. When he got back home, he called all my brothers and sisters, and told them that I had some form of manic depression. I've given him the brochures on POTS and everything, but I guess you can lead a horse to water - - - Anyway, now my family all thinks that I have a psychiatric problem, and that the POTS thing is something I made up to cover it up - 'POTS isn't real Daniel, we've never heard of it before' is what they say 'Just admit what's really wrong with you, so we can get you the help you need'. So, I've had to limit my contact with them - it breaks my heart that my father has managed to convince them that I am mentally ill, and that there is no such condition as POTS. I don't have an answer for you in your situation. It's very difficult, I know. I guess all you can do is try and make them understand. Some people simply never well. Others will.

Wow, licorice root - I should try that. I too have bout of excessive thirst. There was a stage about 4 months ago where I was drinking between 6 and 8 litres of water per day, and still felt thirsty. I'm now down to about 3 or 4 litres, which is still a lot, but works for me.

I also had severe diarrhea, and had to stop after about a week. Although I did gain some benefit from it, the side effects were too great. However, from reading through these forums, I understand many people use it with great success.

Hey Blondie, I'm sorry to hear that you are having such a hard time - I also have had days where I can't see the point of it all, but then I tend to feel better the next day etc. I find I get extremely depressed when I am symptomatic. I see a Psychologist either once a week, or once a fortnight. He is well versed in POTS, and it's great to be able to vent, and say exactly what is annoying you about this condition - and they are helpful, as they can offer solutions, or even if it's get to validate your feelings etc. If you get a good one - you can normally call them on their mobile if you need to - I've done this only once before when I was so ill and so despirate for someone to understand me. I called him, and he came to my house. As a side note - I've been seeing him so long, and had similar upbringings that he only charges me for every second visit, and that's at a highly discounted rate - It's well worth the money. I try to not think POTS will be with me forever, although, I know when you are ill, it can feel like it will last forever. Some changes to your lifestyle can make all the difference - do only things that you can do. If you need rest, go and have a rest. There are still so many wonderful things you can do, and we all just have to accept that there are certain things we can't do. I know for myself, it's the feeling of now not be able to do something, like climb Mt. Everest - I would have never done it anyway, but now I know I can't (if that makes any sense). Take care of yourself, and every now and then, take time to stand back and gain some perspective. Reward yourself for your accomplishments, no matter how small. Believe me, this dreadful feeling won't be with you forever. All the best. Daniel

I've been on a high dose of Propranalol (Inderil) for a long time now (320 mg/day), I don't like to have to constantly take tablets throughout the day - and have tried to lessen the dosage by one tablet a day (down to 280 mg/day), but my body reacts immediatley, and I have tachy as soon as I miss a dose. My docs are considering increasing my dose to 400 mg/day, but I really don't want to do it. But even with this high dose, my resting PR is still over 100 bpm - at the moment it's about 106 bpm, and I've been sitting at my desk for over an hour - it really should be lower than this. But to date, nothing has been able to slow it down to a comfortable level. On the other hand, I have had days where I feel that I am almost poisoned by the BB's, especially on weekends, when I am not doing much - I feel really groggy, and end up the next day feeling as sick as a dog. It may not be the BB's, but I find if on those days, where I wake up ill (like a Sunday), if I miss my first dose of Propranalol, I feel better. I often wonder if it is like a small OD? I'm seeing the doc next week - and ask if I should maybe reduce my dosage on weekends, or days were I am not doing too much.

Cool - I've only just stumbled across this Chit Chat Forum (I had my favourites set to the main forum). I'm Daniel, age 28. I live in Noosa, Queensland, Australia, am originally from Wainuiomata, New Zealand. Lived in Wiltshire, UK for about 3 years before moving to Australia. I'm vegetarian, have a little Chihuahua called Chyna (which I normally like to spell Chynnna - just for fun). And fight as much as I can for animal rights. I have an avid interest in languages - Japanese, Chinese (Mandarin and Cantonese), NZ Maori and Spanish. However, Japanese has to be my favourite - and I do a lot of Shodo, or Japanese Calligraphy. Last year I was commissioned to do some pieces for a Japanese Haiku Poet, by the name of Miyazaki. He liked the fact, that as I was non-Japanese, I wasn't bound by the same rules regarding calligraphy as most Japanese are (as it is taught in schools), and the end result was great, and has been published in his book. I play the bagpipes - I've been playing them since I was about 14 - so for a long time now - and I'm still very passionate about them - they have to be my most treasured possession - I got them as a gift, they are African Blackwood and engraved silver - I'm glad, as I wouldn't like to have ivory or horn etc. I play in many competitions, and have a huge interest in the classical bagpipe music called 'Piobaireachd'. I seem to being playing a lot at Burn's Suppers, Weddings and Funerals lately, and it's great, 'cause the money is fantastic - $100.00 for a 15 minute medley. This week, I have made more from piping than from my normal job! So, I'm starting a new savings fund - I'm not sure what for yet - but I'll get there. I'm also an absolute Star Trek Fanatic - Voyager especially. I work full time as an office manager, and also study full time (dual degree - Business and Arts). Would like to go on and do a Masters in Applied Linguistics. I've had a heart condition called Wolfe-Parkinson-White Syndrome all of my life - and the only way it could be corrected was a complete AV node ablation, and a pace-maker - which I decided against, as it is normally fairly well behaved. I got diagnosed with POTS in 2003 (I Think - might have been 02 or 04???). After frequent fainting, and tachyardia, and just a general feeling of being unwell - I was told by my family practioner that I was depressed, and therefore went to see a Psychologist, who was great, and assured me that I was depressed, but he believed it was the result of something 'organic', it wasn't all in my head. He referred me to a neurologist, and I was lucky enough to get one that has a interested in dysautonomia. Now, I'm under her care, although my POTS isn't being controlled well, despite medication - they are still doing lots of tests to see if there isn't something else lurking around. Generally I pretty happy with my life, although the POTS does get me down, as I can't do all the things I want to do, and seem to miss out on a lot - but I am adapting to my new life, and like Persephone, I am sure a day will eventually come, where I will wake up and feel completely normal again. Anyway, there's plenty more about me, but I don't want to bore you all. It's great to meet everyone. Since finding this forum, it has helped answer many, many questions for me. Daniel

Wow - I can't imagine tipping anyone! We don't tip here, well, only in restaurants if you believe the service was good - but, it's not expected. I've travelled a lot, but can't recall tipping anyone - they must think I'm really stingy!

I was 'pushed' from my last job when I fell ill. I had worked there for 6 years in a mangemental role, and was working long days and weekends. I started to feel ill, and thought it was a bit of 'burn-out', as I have a heart condition, which was fairly well under control, then I got tachycardia that would not stop, and spend almost a week in hospital with the tachy, fainting etc - they couldn't explain it. After my hospital stay, I was given a medical certificate stating I needed a further 2 weeks off work (bearing in mind that I had not had many sick days or even holidays prior to this happening). My boss refused to accept the medical certificate and said that if I did take any time off, I wouldn't have a job to go back to. So, I didn't have any time off, and just got sicker and sicker, until I ended up in hospital again, and then again - it was the doctor who told me to 'quit' my job, as it wasn't helping at all. I didn't want to quit - I had worked there for a fairly long time, made good friends, and traveled the world with this job - but as I got sicker, my boss kept making an example of me in meetings, saying that due to my mystery illness, we couldn't guarantee that we could meet deadlines. It was extremely embarrassing, for both me and all of my colleagues - he just made himself look like an idiot. Anyway, he kept pushing me - didin't like the fact that I was ill (he didn't like 'sick' people, as he was one of these people that never gets the flu or anything, and seemed to think that everyone is faking). It did eventually get so uncomfortable that I had to leave - he did and said things that were illegal - and I could have taken him to court over it - however I couldn't be bothered wasting my energy, when I and my colleagues knew what happened. Anyway, it seems karma has played a role, as pretty much all of the key staff left within 3 months of me leaving - and I was told last week that they haven't been able to fill the roles with suitably qualified people and are now in the process of going into receivership. I drive past there everyday, and what used to be a busy warehouse with a constant stream of delivery trucks and the staff carpark absolutely chockers, is now down to 2 staff members cars and all the doors closed - so it can't be good. I don't like the fact that they are going out of business. But it seems his actions played a major role in what has happened. As after I left - he also fired a woman that had been there for over 10 years for getting pregnant - I believe he has been taken to court by her, and she won. I think after that people started to fear for their jobs, if their life situation ever changed, so they started to look elsewhere. Anyway, I now have a great job, and my new boss, spent most of her life bedridden due to a terrible disease, and has taken a keen interest in POTS, and comes to all my hospital appointments for support. I am truly thrilled that I left my old job.

I've just had a break-through in my job. I am the administration manager for my employer who owns 5 businesses - and up until now, it has required me to make several trips per day to each business to collect the takings, paperwork etc and then work out of one of the businesses that has my office set up in it. My employer has seen me at my worst, POTS-wise, and allows me to have flexible hours - so I generally start later in the morning (10am), and work a bit later. The subject has been brought up many times about working from home, however I am not comfortable with it, as I used to to it with my old job, and I always felt I was at work, and could always hear new e-mails coming, and just had to check them and respond - so I ended up working 14-15 hour days. My boss only lives down the street from me, and rather than doing all the traveling to the different businesses, he has decided he will do it, as he has to go to all of the businesses everyday anyway. And to my surprise, he has set an office up for me at his house, and given me the keys - so I can come and go as I please (so long as I complete my workload), and there is no need for me to drive everywhere. I mentioned I am getting an e-cycle (electric bicycle - Bolwell City Elite if anyone is interested), so I can ride there in the morning, and even take my little dog - it's going to be great. I'm in the process now of moving everything from my old office into this new one, and will be working from there full time in 2 weeks. It's great for me. So, I was lucky - it's just what I needed, but I didn't have to ask for it. It will make working a lot easier for me (He's even put a day bed type thing ing my office, just in case I don't feel well during the day). I'm so excited!

I normally just say something like 'not too bad, and you?', which is a fairly common response here anyway - and the meaning is true, I could be worse, but I could be better... Or, one of my friends used to say 'I'm FINE, thank you' and then say under her breath ________ (Insert Expletive) Up, Insecure, Nausious and Emotional'. I thought that was kinda funny - as only she new what she really meant....

I found a place called Ames Walker on the internet that sells a large range. I was particularly interested in their men's range - as I don't want it to look like I am wearing pantyhose. They have some great men's ones - well they did last time I looked.