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Hi Everyone, I've posted on here many times recently, and had so many supportive comments. I had an appointment with my neurologist yesterday, and I am wondering if POTS progresses, and if so, to what level? I have noticed over the past few months, that I am getting more and more frequent spells of fainting and tachy (the neurologist noticed that I had a strange gait/gate (sp?), and thought it was to compensate for the feeling I get from sitting to standing, and the lightheadedness that follows - it seems I get up and walk with my feet quite far apart to help steady myself. Also, I have noticed that I have had numbness and pins and needles in my hands (especially my right hand), along with diarrea, and a little bit of incontinence. I wouldn't normally discuss this with strangers, but know you won't judge. The most disturbing thing for me is total impotence - and I mean total! The neurologist said that all of these things are related to the autonomic nervious system, and has ordered a battery of tests - full blood works, diabetes, HIV, leukemia and all sorts of things - I swear I have never had so much blood taken from me before. I also have to give her 24 hours of urine, and 3 days of faeces, along with another feacal sample that as the pathologist said, needs to be very fresh when they get it, and as I have diarrea, she needs, in her words, both the curds and the whey! She didn't tell me exactly what was going on, I am just guessing she wants to rule out a few things. Anyone experienced these other symptoms? What could be going on? I'm a little bit scared being tested for all these nasty things...

I completely understand. My friends and family don't understand either - they tend to think that I am just lazy if I won't go out to dinner with them, or I go to bed at 6pm and wake up at 8am. As far as they can see, if you're not vomiting, or having some form of 'evidence' they can see, then what can be wrong with you??? To be honest, I find it easier to tell them I have a heart condition (well, that's what the doctors thought for 8 years anyway), and they seem to leave me alone. Although I have frequent visits to the ER, I never bother to tell anyone - it's gets too complicated to explain. For me, this last month has been a killer - I didn't realise how sick I have been (as well as having other troubles). I keep a diary of everything as I am so forgetful these days, and write in it every day, and put in what symptoms I had been having, if I had fainted, or felt faint, if I had to see a doctor, or get a prescription. I actually didn't notice that I have been quite ill this past month - and seen my GP 5 times in a month! And fainted or came close to it many, many times. I've had a gastic problem and also the flu. At the beginning of the month I had a terrible POTS 'case', and was bedriden for a week (my father came up from Melbourne to see me, and couldn't see what I was complaining about), he just couldn't comprehend why I was so lethargic (I gave him the dinet website address, and now he seems a bit more informed and understanding). I also printed out some info from the dinet website about the condition for people close to me (or people that have some type of 'duty of care'), like my employer, who is thankfully very understanding, and the Pipe Major of my Pipe Band - so that we could work out a way for me to 'fall out' of a parade or performance situation if I felt faint - and that has worked out okay as well. So, I guess what I am trying to say is, there is some great info on the dinet website, obviously your family would have your best interests at heart, so, maybe you could give them some extracts from the info on the site, just to show them what your day to day life really is like...

Hi, I'm sorry, I didn't mean to imply that you should have checked your BP right there and then, I know that would be awkward. I was just offering what I thought could explain it (in that your BP could have been low when you were in the store, but might have corrected itself when you sat down to take to BP). I'm sorry if I offended you in any way. It happens to me all the time - everytime I go to the doctor, he checks my BP and says "ahhh, a bit tachycardic, but, your blood pressure is good", then I ask him to do it again when I stand up, and he notices a huge drop in my blood pressure, along with the raise in HR.

Could your BP have been okay as you were sitting in your car when you took it, rather than standing? I know mine changes the instant I stand or sit.

I also suffer from anxiety. My doctor tells me that it is to do with autonomic nervious system. She says it gets confused, and thinks it needs to panic when it really doesn't. I find I normally wake up anxious, and then get another bout in the afternoon, and then another one later at night.

Thanks everyone for your kind words. This problem is on my mind every minute of every day, and now I find out that the court date is the 19th December (Christmas Week). I have been churning this over in my head over and over again, and to be honest, I don't know what else I could have done. I'm still shocked that my alcohol level was so high - as I was drinking to the guidelines of one standard drink per hour, not because I wanted to drive, but because I didn't want to feel ill in the morning for band practice. Now, looking back in my diary, I had seen my doctor only the week before, as I had awful diarrea (sp?), and vomiting, and he was concerned that I was dehydrated, and noted that my BP was very low. During that week the symptoms persisted, and I even had several faints, so am guessing my blood volume was low - which may account for the reading being high. I am seeing a psychologist about this, as the whole event has made me feel completely unsafe, even in my own house. If I wake up at night, I seem to be paralyised with fear - thinking that there is someone in the room, and also keep having nightmares of the 'lead' guy that was trying to rip my kilt of laughing at me. The lawyer isn't sure what the outcome would be - she has never seen a case like this - with someone who has never broken the law at all, who has a chronic illness, who has evidence of being assulted and also the fact my car was damaged, and also the fact that I could face such a severe lose of licence and fine for protecting myself, and only driving for less than 1 minute. I have a mountain of evidence to back up my story, and also all of my medical records showing that I had been ill, and had stopped taking all the medications that increase blood volume. I've got the report from my GP showing that I am suffering the physical effects of severe anxiety, and fear. And I have a report from my psychologist stating that in his opinion and the fact that the only time before that I had been attacked, I was injured - I have the scars to prove it! He believes my actions were justified, and the fact that I only moved the car to another carpark shows I still had the law in mind, and was only trying to protect myself. Now, I am at a point were I feel like somethings going to harm me all the time - I am told this is normal, and will pass with time. And to be frank, I don't care about my licence anymore, I just want to get back to feeling relatively normal. I don't want to be scared in my own house. I pray that the legal system can see sense.

I have the same problem. I get terrible insomnia - where I can't sleep at all - I have gone for over a week on only a few hours of sleep in total. Most nights I am lucky to sleep for 30 minutes undisturbed. I have awful nightmares/night terrors though, and and somewhat afraid of going to sleep - so that doesn't help. I can sleep during the day - but as I work and study, I can't always do that. And of course the Docs tell you not to do that, as it ruins your chances of sleeping at night... Although I only sleep a little during the week, I find that I tend to spend most of the weekend in bed - someone once told me that sleep was a bit like a cheque account - if you don't sleep enough in one night, you will have to make it up somewhere along the line to balance the account as it were... I try not to worry about it too much anymore, the more I think about it, the worse it is. I still never go to bed before 3am, as all I do is toss and turn, and just can't rest. Even if I take a sleeping pill or two, I still can't sleep... It's weird, but something I am used to now.

Well, We don't celebrate thanksgiving in this part of the world, but I do have some things to be thankful for. 1. A loving a supportive partner 2. Art in all it's forms, from grafitti to Da Vinci 3. For Study, and the fact that knowledge brings power 4. For good Music (like Piobaireachd) - I'd love to know if anyone in this forum appreciates Piobaireachd as much as I. 5. For a good job, an employer that understands the needs of someone like me 6. For good food. 7. For Salt. Where would I be without it. 8. For faith that there is a higher power, whom without I would be nothing. And the knowledge that there was someone that created Bagpipes! 9. For my little Chihuahua, Chyna the Chocolate Chihuahua, I love her so much. 10. A little indulgent, but I am thankful for my sleepyrest super king size bed. Please note that just because I numbered these things doesn't mean that some things are less of a priority than others.

I'm from Australia (born in New Zealand) and don't understand your codes (TX, DA etc). I have never been to the US, and have never met anyone from Ohio, so don't know if that means that I shouldn't have POTS or what ???

Hi CyberPxie, I know it's difficult having a chronic illness such as POTS, however life does go on, and you need to do whatever makes you happy (so long as it's legal and doesn't hurt anyone). POTS is difficult enough in itself, so is starting a new relationship, or deciding to move in together as is your case. It will take time for both of you to adapt, but so long as it feels right, I recommend doing it. Having a chronic illness is hard, if you have someone that is willing to hold you hand through it, don't let them go. That's all I can say, unless you have reservations of course, that hopefully you can talk to your partner about.

No, I don't feel faint or anything before hand - I feel fine, but after it's happened, it feels like a relief - like when you pop a black head it doesn't bother you too much before, but feels good once it's gone. There is no pain or anything involved. Just the sound and feeling of fluid squirting.... Must just be a design flaw. Anyhow, I'm seeing the neurologist later this week. I'll ask her again, and see if she can come up with something. I'm not worried about it - just wanted to know if anyone else experiences it. As no-one I know has a clue what I mean.

Hi, I just thought I'd put this on here and see if anyone else experiences the same thing. Everyday, especially around noon, I can hear/feel fluid squirting up and down the back of my neck/head (inside my head and neck). I've asked some of my friends and they don't have any idea what I am talking about. I've also asked my neurologist, and she doesn't have an explaination for it. Whilst it isn't painful, I feel kind of relieved once it has happened. Is this normal??? Maybe I am just sensitive and can feel/hear it whereas others can't??? Just thought I'd see if anyone else knows about this.

I've taken Tambacor and Propranalol to help control my heart rate, and they work, although I don't like taking such a high dose of propranalol (320mg per day). SSRI's give me insomnia, so I don't take them, as I have to then take either Stillnox or Immovane to be able to sleep - and then I wake up with a hang-over type feeling everyday. Mestinon didn't work to well for me personally - it gave me huge gastric problems, and I didn't get any noticable benefit from them. Florinef helps, buts gives me a migraine type headache. I also take a bit of Xanax to calm my anxiety. I'm currently trying to adjust the quantities of Florinef/Mestinon and Sodium Chloride to try and keep my blood volume up, but not have the side effects - so far I haven't found the right combination. My neurologist has suggested some type of adrenaline treatment next, since the others aren't working - I'm not sure what this is exactly, but will let you know. I am see her next week.

Thank you so much everyone who replied. I have been dying about not being entirely true. It's hard to tell someone you were assulted. And it's not supposed to happen here - this is supposed to be a nice quiet beach side town. I come from a long line of pipers (as they say it takes 7 years and 7 generations to be any good at it). When I was young and saw my grandfather and his friends in their full uniform, I had nothing but the highest respect for them. I cannot see why some people feel the need to violate people in this way - albeit, it may seem funny to them, but for me, I was terrified - like I said I've only been in a similar position once before, and I was harmed then - so I guess my brain told me that the same thing was going to happen (once bitten, twice shy). Anyway, I don't know what else I could have done. I had to protect myself. I have a good lawyer, but never having been in trouble before, I don't really know what is happening, although she did mention that after she gets the police to re-word their charge report (as they have exageratted some things, and failed to mention other important things), she said I have enough evidence to prove I was protecting myself, and that the threat to me was real - she has even considered that once all the correct info comes in, of writing to the magistrate and asking him to dismiss the case. It's just knowing that I have this hanging over my head, and at this stage it looks like it won't be finalised until early in the New Year. I will have to try and put it out of my mind. Anyway, I have a concert to play at tomorrow in an Ampitheatre - opening the 'Opera at the Ampitheatre'. So, that will keep me busy tomorrow. Thanks once again to all who replied. Daniel

I have a letter from my neurologist that states that I have POTS and describes exactly what it is, and what the common symptoms are. Whenever I have to go to the ER, usually for tachy at around 180bpm, I take this letter with me - I seem to get better treatment now that I have the letter stating that there is something organically wrong, and that it isn't psychological. Before that, they used to get a psych to see me, and give me some Valium and an extra dose of Beta Blockers. Now at least they can put me on a drip, and watch my hr and bp... Maybe try and get a letter like that, that you can take with you on any such trips.

Thanks Laura, To be honest, I am freaking out right now. Mainly the fact that I don't feel safe in my own house...(strange??) I can't sleep, but deeply appreciate you kind comments. Be well, Daniel

Okay, it's nearly 2am here, some please forgive me for being untrue to you. I'm suffering here.....

Hi Bamagirl, I get the same symtoms I know, but after reading your post and carefully anylising what happens to me is: 1. Normally in the evening I will get very excited, and want to talk about my family. 2. I wake up very early in the morning, about 5am, and am very creative, I either paint, write or sculpture. 3. I have a small breakdown to the ones close to me, even over the silliest things, and I get very irrational, at this point I tend to have severe memory lose, or brain fog as it is referred to on here 4. Next day, I wake up very tachy, and need to take a triple dose of beta-blockers to even get out of bed. 5. Closely followed by a deep depression. 6. Normally have to go to hospital for tachy and low bp. 7. Severe night terrors, cold sweats, and terrible insomnia, along with not being able to be woken up in the morning. During stage 7, I find I get pooling of blood even in my hands whilst sitting - I call them toilet hands, as that is when I seem to notice them.... 8. I will get the 'phantom itch' as decribed in a previous post. Foe me it tends to take at least 10 day to get over these 'flares'. All I can say is be strong, you're not in this alone. Take care, and be well. Daniel

Hi guys, If you have read my posts, you will know that I am battling with POTS, Flares, Anxiety, and Fluid Intake. MODERATORS: This is related to POTS, and also previous medical conditions. I posted a message on here about being detained by the police for DUI, I feel bad for not telling the entire truth to you guys, and I hope you won't judge me to severly for it. Firstly, I had spent the whole weekend with many engagements with the pipe band, so stopped taking an Florinef, Mestinon, or Sodium Chloride, as they all give me awful side effects. I played great on both the Saturday and the Sunday, and had a couple of drinks with the band after the performace as is customary for a good performance. I than had dinner with a friend and met up with another friend whom I hadn't seen in a long time. I had no intention of driving - I won't even drive after one drink as I know how alcohol impears (sp?) me. However stuck to the guidelines of 1 standard drink per hour. This wasn't because I wanted to drive, but because I was walking/strolling home, I didn't want a hangover for band practice the next morning. As I play the pipes, and had them with me, I left them with a manager behind the bar, and when I went to leave I thought I'd go and get the case out of my car along with my full water bottle - It was after midnight and I was dressed in full scots uniform - something I am proud to wear, but unfortunately, something everyone wants to know what you are wearing under it. On my way to the car, a group of 5 really drunk young guys came up to me with all the comments "what's under yer kilt laddie" etc, and tried to rip my kilt off me (this was in a dark carpark). About 11 years ago a similar situation happened and I was stabbed 3 times, fortunately they were only flesh wounds, and only required cleaning and stitching, although I still bare the scars to this day. After being 'assulted' in the way I was, I guess my brain took over and told me I was in danger (I actually pissed myself). The only place close was my car (which when I got to had had the front drivers side panel kicked in, which wasn't there in the morning) - and the only thing I could think of to do that was bending the law a little, was to drive to the next carpark (about 40 seconds drive), so I could continue on foot home (by the way, my home would have only taken another minute or so to get to by car, but I knew I shouldn't drive under the influence). But I had to protect myself, by whatever means possible (having POTS, there is no way I could have fought of 5 guys that were much more stronger than I). I parked my car in the next carpark, and as I was locking my car, the police pulled up, and breathylised me (I was 3 times over the limit), although that is not an excuse, I didn't actually consider that low blood volume would play a part in this. I am 6' tall, and look fairly muscular - although I have no strength, and to be honest have never ever been in a fight - I wouldn't know how to fight. I was charged with driving over the limit and the rest of the story continues as per my previous posts, in that, I have to plead guilty, or pay over $3000.00 for it to go to trial, none of which is recoverable. My Neurologist is prepared to state that I have a fairly severe case of POTS, and my Psychologist has no doubts as to whether I was attacked and is preparing a summary for the magistrate. I have also had to get tranquilisers from my GP for severe anxiety attacks, even in between my attacks my heart rate is over 120 bpm. So you can imagine what it is like during and attack. I've got photos of the damage done to my clothing, and also to my car. But I am still so, so so scared. I'm sorry I lied to you guys, but it is hard for someone who is over 6' tall and almost 100 kgs to admit I can't defend myself. I am not a frequent drinker and especially with adjusting my meds to try and get comfortable without the side effects, I cannot guage when I am over the limit. Everyone who was with me decided to drive home, however, I knew I couldn't, so decided to take a nice quiet walk home. Oh God, I wish I hadn't woken up that day.... I wish I didn't lie to you guys, but it's hard for me to face. By the way, I have never even had a parking ticket let alone a speeding ticket, or anything else - I have never had the need in my 28 years of life to speak to a police officer (and after my experience, I know why they are called pigs). I just wonder what would have happened should I have been a 22 year old female??? Once again I am so sorry for being untrue. I hope you can appreciate the position I am in, and forgive me. All the best, Daniel

Wow, someone else with Phantom Itchiness - I'm not alone!!! It usually lasts a couple of days with me to, it is weird and scary - it almost feels like you're living in someone elses skin that hasn't been put on properly (if that makes sense at all). If you get any info, I would appreciate it - as I am in Australia, the neurologists probably don't have as much information as your guys do.

I also have symptoms similar to these, but didn't know what they were called. On top of what you get, I get a strange sensation, that feels almost like my skin has moved, for instance if I touch the top of my hand, it feels like I'm touching my wrist (where your watch goes), or I'll touch my forehead and it feels like I'm touching the top of my head - it's like everything has moved a couple of inches - if that makes sense.

My Doc told me that it would be a good idea for me to wear them, but would be very uncomfortable living in the area I do, where in Summer the temperature can easily get up to +40 C. So far, I've done without them, but avoid standing for too long. Maybe I could try them in Winter when it might be a little more comfortable...

I can't relate to having a menstural cycle, but I do have swollen glands most of the time, especially under my arms, in my groin and on the back of my head - I've been tested for infections and even leukemia, but there is no sign of anything strange - just swollen glands everywhere. Anyhow, it is a sign that somethings not right, and you really need to see someone about it, and have things checked out.

I'm sorry you're going through this, I also get tachy almost daily, and a very tight feeling in my chest - like there is a tight strap around it - I think that is more of a panic thing from the tachy, although I occasionally feel sharp stabbing pains inside my chest. Some simple cures that I find sometimes work, are : To lay on a bed with your head down and your legs up. To pack your mouth with ice. To massage your corotid artery. They don't work all the time, but the ice one seems to work reasonably well for me. It may be worth a try. Good luck with it all...

Hi, I can relate to what you are saying. I can generally only eat one meal a day and that is at about 9pm - it seems to be the only time I can handle food - I drink plenty of juice and water throughout the day (expecially V8 Juice). Although I find if I drink even water just after waking up, I soon vomit, I need to wait at least an hour after waking to drink anything. It seems to take me from 7-8am in the morning until 9pm at night for my stomach to be receptive to food. I don't mind it though - with the intolorence for excercise, it helps keep the weight off - well, that's how I look at it. But then there are the odd occasions were I just feel like a tomato sandwich in the afternoon.... Odd isn't it. But I can relate. It's obviously not good to not be able to keep any food down, so you should address that as soon as you can with your doctor. There are plenty of suppliment type meals (like milkshake things that you drink), perhaps you could try sipping on one of those every few hours - at least if you can stomach it, you will get the vitamins and minerals your body needs. Just and idea. I truly hope it all works out for you very soon.