Sandra

Hi Tilly What can I say, but Welcome To Our World I live in Hampshire. I am in and out of my local hospital every few months, usually when I keel over in the street and people call an ambulance. I was actually in 2 weeks ago during the last Bank Holiday due to very low blood pressure, and I couldn't stand without feeling dizzy or faint. When I was in the process of being diagnosed I was sent up to The National Hospital for Neurology and Neurosurgery in Queens Square London (right next door to Great Ormond Street Hospt) I was diagnosed with POTs up there in August 2006 after lengthy autonomic tests. My doctor is called Professor Mathias, he's a lovely man and has all the time in the world for you. I have to go up there for clinic appointments every 4 months, and although I don't see the Prof every time, I do see members of his excellent team. My GP told me that he had heard of autonomic disfunction, but had never met anyone with it in all his 30+ years of practicing. As well as being tachycardic (which I take Sotalol to control it) I am also brachycardic, my heart tends to slow right down and has actually stopped three times. Because of this I had a permanent pacemaker inserted in September 2007. Like you I searched the internet for a forum of some sort to do with POTs and found this one. Although I very rarely post, I do read it a lot and find the people on it all very supportive and friendly. At the moment I'm having problems with my blood pressure. I'm on Fludrocortisone to raise it, but it's far too high at the moment - yesterdays reading at the GP's was 188/115. This happened last year, I was taken off the Fludrocorisone and put on Midodrine which was awful. I had such terrible side effects with it that I ended up in A&E, then was in CCU for a week (Cardiac Care Unit) so I never take that again! In November 2008 I was taken off Fludrocortisone altogether as my blood pressure was ridiculously high.. 3 weeks later I was back in A&E with a blood pressure of 58/45 no wonder I kept feeling faint! So even after nearly 3 years of being diagnosed, they are still fine tuning my medication. I went up to Queens Square 4 times during April... we go by train as parking is a nightmare up there. I had a clinic appointment and 3 occupational therapy appointments. The OT's are really good and gave me some brilliant ideas to help me around the home. She also did a fatigue management diary, and various other things with me. take care and good luck with it all Sandra (aged 47)

I thought it was just me!! I have just read this out to my husband, I almost always feel faint.... and have fainted after a bowel movement. Last week I was ambulanced into hospital as I blacked out in the middle of the shopping centre whist xmas shopping. I was kept in all week, only being let out on Tuesday (25th Nov) They wouldn't let me out sooner as my blood pressure was far too low. But while I was in I had to use a bedpan too because I fainted after going on the commode - I had to use a commode as I was wired up to the monitors above the bed. Sorry if this is a bit gross - my bowel movements are usually soft and quite easy to pass so I don't have to strain, but I still feel very light headed when I go. Very interesting thread. Sandra

Hi Willows I hope you don't mind me adding to your thread, but that's exactly what used to happen to me. My heart used to stop and restart on its own everytime I fainted. I didn't realise this until I was having my autonomic testing up at The National Hospital in Queens Square. As you know you are covered in monitors etc, and have to do all sorts of things, eg hand in ice for 3 mins! When I was tilted almost upright (it was 60 degrees) I blacked out/fainted. When I came to the crash team were in the room. Apparently my heart had stopped or asystole as they call it for 35 seconds, which is quite a long time. I was told that they were watching me to see if it started on it's own, which it did, but if it had not started after 45 seconds then they were going to start chest compressions. This was in Aug 2006. This happened a few times afterwards, once in my local hospital when I collapsed in the town centre and was brought in under blue lights (as usual) Prof Mathias decided to recommend me to his collegue at The Heart Hospital - all part of University College London Hospitals. It was then decided that I was to have a reveal monitor put in, so they could see these episodes as they call them. On 12th Sept 2007, I went in to The Heart Hospital as a day patient to have the Reveal fitted. When I was in there, I did my usual trick and fainted, but because I was compleatly monitored up, they could acually see my heart rate drop and my heart stop. When I came to, I was surrounded by the crash team, and had the de-fib pads on, apparently I had chest compressions as well as being shocked. I ended up being in The Heart Hospital (which is in Westmoreland Street, Marylebone, London) for 6 days and having a permanent pacemaker fitted. Since I have had my pacemaker, I have NOT fainted at all!! Although I have been rushed into hospital 3 times this year due to me collapsing again, but not through tachycardia or brachycardia, but because of my unstable blood pressure. The last time I collapsed was 1st Aug this year, I was blue lighted to hospital, and in resuss for 5 hours until they found a blood pressure. I was then transferred to CCU and came out on 7th Aug. I was on Fludrocortisone, but when I was in hospital I was put on a tablet called Midodrine which I had to take 3 times a day. I was having some very severe side effects with this new drug which included feeling dizzy all the time - almost a vertigo dizzyness, eyesight problems - very blurred vision, and I had 4 'Silent Migraines' these are where I couldn't see out of the side of my eyes (that's probably got a proper name) and I was only seeing the top half of things eg, I could only see the top half lady in front of me in town, I couldn't see her legs. I was also seeing black and white zig-zags in front of me. I was having all the symptoms of a migraine, but no pain. I was also getting a sort of pins and needles effect in my scalp, cold chills, and nausea. I saw my GP last week as I was getting concerned about the way I was feeling, and he immeadiatly rang the consultant at my local hospital who put me on the Midodrine, told him my symptoms, and I was told to stop taking it straight away. That was last Friday, so I haven't had any blood pressure medication for a week and a half now. Tomorrow (15th Oct) I'm off to Queen Square to see Prof Mathias - I see him every 6 months, so hopefully I can be sorted out. As yesterday my GP did my blood pressure and it was 69/42. Sandra ps. since I've had my pacemaker, my heart rate can't go below 49 bpm, when my heart rate drops my pacer kicks in to pace at 80 bpm for 2 mins by which time my heart rate has usually picked up on it's own. At my last pacer check (when I was in hosp in Aug) my pacer had kicked in 34 times during the previous 6 hours!

Hi I had this, when my heat rate kept dropping, I wasn't really aware of it I suppose when you feel so awful all the time you tend to get used to it. In August this year I fainted (as usual) but couldn't seem to come round properly after the faint, every time I opened my eyes I passed out again. My husband called an ambulance and I spent 5 days in my local hospital's Coronary Care Unit. It was then when I was wired up that they noticed my heart rate was slowing dramatically, as well as the tachycardia, my heart was slowing to 20 and 30 bpm. I was then sent up to London to have a Reveal Device inserted so they could see exactly what my heart rate was doing over a couple of months. They also noted that when I fainted my heart actually stopped for 20 to 30 seconds (Asystole) This also happened when I was having a tilt test done for Prof Mathias at The National Hospital, when I was tilted to 60 degrees I was Asystole for 25 seconds. While I was in the Cath Lab having the procedure done to insert the Reveal Device I fainted. When I came round the doctor told me they watched my heart rate drop from 86 to 20 which made me faint, my heart then stopped. They brought me back using chest compressions and the de-fib pads. I was then fitted with a permanent pacemaker. This was in September this year. It's been the best thing that has ever happened to me, I have been 'tweaked' a few times so that my heart rate will never fall below 60 beats per minute. it's wonderful, I haven't fainted since September 12th! Maybe you might need a pacemaker? good luck Sandra

Hi I have just picked up my prescription this morning, I was told that I now have to keep my Fludrocortisone (Florinef) tablets in the fridge, I have never been told this before and usually keep them with all my other medications in a cupboard. The Pharmacist gave me the information leaflet that comes with the Fludrocortisone, and sure enough it states 'Store in a refridgerator 2-8 degrees C. Keep the container tightly closed to protect from moisture' Also they have changed colour from pink to white. Does anyone else keep their Fludrocortisone in the fridge? Has it changed globally, or is this just an English thing? Sandra

Hi Valentine Nice to speak to you. I also see Prof Mathias. He asked me when I went to see him the first time if I had any shoulder and neck stiffness/pain (which I do) He felt around my neck and shoulders, then referred me to his collegue, a rhumatologist called Prof Grahame. I saw Prof Graham at UCLH, and he diagnosed me with Ehlers-Danlos Syndrome and cervical sponylosis. I had a few weeks of consentrated physio to relieve my neck pain and stiffness. It's still very much there, but not half as bad. I don't know if it's a POTS thing, or an EDS thing. I have bought a memory foam pillow which works wonders. It supports my neck in all the right places. The shoulder/neck stiffness/pain is constant which I think is why I am always getting headaches... or maybe the POTS gives me headaches, or the low blood pressure....sorry, not much help. But I just wanted to say that you are not on your own with these symptoms. Funny you mention about pressure on the ears, I get this a lot, mainly when I get up, I always thought it was to do with low blood pressure? as the more I feel the pressure on my eardrums, the more faint I feel. Sandra

Hi Lil Miss Sorry I didn't reply straight away, but I have been in hospital most of the week. On Sunday night/Monday morning, not long after I posted on this thread I had an 'episode'. It was about 4.30am, I fainted but couldn't come round. I was sort of coming round and fainting again, so my husband called the ambulance. I have been in the Coronary Care Unit of my local hospital for most of the week. I came out on Friday afternoon. My husband told the Cardiac Reg in A&E that when I passed out, I stopped breathing. This is probably why I felt so grotty, and couldn't come round properly, as I suspect that my heart stopped for a short while again. It has done this 3 times this year, twice in A&E and once on the Tilt-table in The National Hospital when I was having my Autonomic tests. In answer to your question, no I didn't have a 5 day test, but have had 3 seperate days of testing. One lasted about 4 hours (when I was Asystole - the name they called it when my heart stopped and restarted on its own) One was for an Atropine test, which also involved the tilt-table and the drug Atropine was give intraveniously so they could see whether it was my tachycardia or my low blood pressure causing me to faint. And the last one was for blood pressure testing, including a 24 hour blood pressure monitor. I am very breathless at the moment, so I am going up to UCLH on Thursday for lung function tests. Although I personally think my lungs are fine, it's just my condition that is causing it. On 12th Sept I am having a Reveal Device fitted, which will stay in me for 2 to 4 months, so they can see how my heart rate is, and also to see if, and what Pacemaker to have if they feel I need one. I have been taken off Fludrocortisone, so am feeling a bit dizzy at the moment. I am sleeping most of the day too. I was taken off Fludrocortisone because my usually low blood pressure had decided to hit the roof! Prof Mathias referred me to his collegue Dr Holdright at The Heart Hospital, which is still part of the UCLH group of hospitals. My local hospital phoned her for advice when I was in this week, I will have the Reveal Device fitted at The Heart Hosp. Please let us all know how your appointment goes. take care Sandra

Hi Prof Mathias is lovely. He is very patient, and he actually listens to you. He will put you at your ease immeadiatly. When I had the appointment letter, my appointment was 10 months later! I rang the hospital and asked if I could go on to a cancellation list. They rang me a week later and asked if I could go the next day, which I could, so I was very lucky. The hospital is very easy to find and only a 5 minute...ok 15 minute at my pace... walk from Russell Square Underground. It is clearly sign posted from Russell Square. It's right next door to Great Ormond Street. Good Luck Sandra

Hi I live in the UK too, in Hampshire. Reading your post was just like my own experience. I had been fainting on and off for ages, but it wasn't until Dec 05 that I ended up in hospital. I was in the Coronary Care Unit for a week as they thought I was having SVT's too. Although I was discharged on beta-blokers (propanalol) After a lot more 'episodes' and ambulance rides to A&E, the heart consultant sent me up to London. I am now under the care of Professor Mathias at The National Hospital for Neurology and Neurosurgery. Is that where they have sent you? It's part of the University College Hospital Group. I had my Autonomic tests (tilt-table, 24 hour blood pressure, Atropine test etc ) up there. Sandra

Hello, just a quick update This morning I had an appointment at the doctors for the results of my chest x-ray and my spirometery test. The x-ray was clear (I could have told him that, as I don't feel 'chesty') I don't have Asthma, Bronchitis or Emphysema, which I knew anyway. He said the results of the Spirometery showed I have the lung function of a 78 year old woman - I am 45. He said it was more than likely the Sotalol I am taking that is causing my breathlessness, and combined with my condition and circulation problems he dosen't want to 'mess' with my medication. So he is going to get me an emergency appointment to see my Cardiologist at University College Hospital who Prof Mathias sent me to see when I was in the process of being diagnosed. Then she can decide to take me off, or change the beta-blocker. I last saw her in November, and she was thinking about putting a pacemaker in me, but wanted to see how I go on the medication first. I was actually tried on the calcium channel blocker Verapermil, but that made me feel so awful, woozy, severe migraine's etc, that I was put back on Sotalol. I have also tried Propanolol, but I was still tachycardic on that. Question - has anyone had a pacemaker put in to try to regulate their heart beat? if so, when you have a pacemaker fitted, does it mean you can come off of the beta-blocker? Sandra

Thanks for your replies. That's very intreresting to see that it's probably due to pots and not the medication, and that it's not just me who suffers from it. I am very lucky, when I was diagnosed by Prof Mathias in London, although my GP had heard of Autonomic Dysfunction, he had never come across anyone with it. He told me that he had gone on a very steep learning curve with me, and he is learning new things about the condition all the time. He said that he has been reading up about it, as although I am under the care of Prof Mathias, ultimatly he is my family Doctor, and he is the first one I go to when things go wrong. I know that you're right, and the tests will show I don't have Asthma. I will probably be the same about blowing, after three attempts at the peak flow monitor yesterday, only one was strong enough to show a reading. I am going to print off your replies and take them with me when I see him again, which is after all the tests, on the 5th July, so he can see other pots sufferers are breathless too. Sandra

Hello I get very breathless just doing normal everyday things. I can't walk and talk at the same time as I get out of breath, and as the weather has been getting warmer, I seem to be getting worse. I don't have Asthma, but my son does, so I know all the symptoms. I am not wheezy, I don't have a cold or hayfever. I was getting so fed up with it, that I went to my GP's this morning. He did a Peak Flow reading on me, and it read 213, whereas for my age, weight and height, it's supposed to be 460. He has booked me in next week for a Spirometry Test. I'm not sure what that is, but it's probably something to do with breathing. I also had a chest x-ray this morning. My GP said he thinks my breathlessness is caused by the beta-blocker I take - Sotalol. Does anyone else share my problem, if so did changing beta-blockers help? I used to be on Propanolol, but that didn't stop my tachycardia. I was tried on Verapamil, but that gave me terrible headaches. Sotalol is the only one that seems to work for me. For example this morning when I first got up, I felt tachy, checked my heartrate and I was 147 beats per minute. Half an hour after I had my Sotalol, it had gone down to normal - 81 bpm. He also said circulatory problems also cause breathlessness, I lifted up my trouser leg and showed him my lovely bluey/purpley mottled shins and calfs. "Wow" he said ( I could tell he was suitably impressed lol) I am not due to see Prof Mathias up in London until October. Do you find breathlessness goes with the territory? Sandra

Thank you to everyone, such comforting words and great suggestions as how to cope. My mind still thinks my body can do things it could do a few years ago, which is why I think I am so frustrated with myself all the time. Simple everyday household chores, are now such a challenge. I think the reason I felt so down at the moment, is because I am finally accepting the inevitable, that I am not going to get better, and it's only just hit me. Over the last couple of days I have decided I have to just accept it, my daughter took me out this morning and I bought three new summer tops in the next size up, a size 14. So from now on, it's think positive, and not to look back at what I used to be able to do. Thanks again for your support, you lot are fantastic Sandra X

That's a very intresting point you made Anna. When I saw Prof Mathias on 20th Feb 07 for a clinic appointment, I asked him if I really need to take the Aspirin, as I am a Coeliac, and it can/does cause an upset stomach etc. He said I need to carry on with it, as I still have quite bad tachycardia, and it ensures that my blood is thin enough to cope (or words to that effect) I take 40mg of Sotalol in the morning. I was on 40mg in the morning and 40mg in the evening, but I was getting so brachycardic, and feeling completley unwell, that he halved the dose. Now the Sotolol tends to wear off by about 8pm, and then I start to feel a bit tachy. I'm usually in bed by 9pm, so it's not too much of a problem.... until I get up in the morning! Apparently this is 'normal' for people with my conditon, and I will just have to learn to live with it!!! He said try to get out of bed slowly!!.... is there any other way? I have arthritis and EDS, I don't exactly jump out of bed and jog down stairs! And if I feel dizzy, lightheaded or feel like I might faint, no matter where you are lay down. This is ok in theory, but I was in the middle of Tesco with my husband doing the weekly shop, and people were panicking. My husband had to tell them not to get an ambulance, that I will be 'ok' in a few minutes. It's all very embarrassing. Another thing I have noticed, I bruise really easy, I only have to brush up against something and I have a mark. I don't know if this is due to the aspirin? thin blood etc..... or could be EDS, or could be POTS. Thanks again everyone with your words of support. and thanks for the EDs website link. Sandra X Karen, if you are reading this, I saw your message then it disappeared. I guessed it was the Amitriptyline causing the weight gain. I have gained 9lbs in 4 weeks!!........ I wonder if you lose weight that quickly when you come off it?!!

Thankyou for your lovely kind words, you all have cheered me up no end. It's a comfort to know that you people out there actually know how I am feeling. The trouble with this condition is that it isn't visible. If you have a broken arm, you have a cast on it, and people can see the problem and sympathise. But when there is nothing to see, people tend to think there is nothing wrong with you. I suppose compression hose is the answer, can you get them on prescription? As I have the yearly pre-pay certificate. If I had to pay for every item I get per month which is between 18 and 25 items, (including all my gluten free bread etc) at ?6.65 an item I wouldn't be able to afford to be ill! Thanks again Sandra X special thanks to you Pat X

Hi Everyone I am feeling very fed-up at the moment, and just needed to 'talk' to someone, and I know you lot will listen. I was diagnosted with POTS by Prof Mathias last summer, in October last year I was diagnosed with EDS (Ehlers-Danlos Syndrome) type3 by Prof Grahame. I have arthritis, I have also had Coeliac Disease for the past 8 years. I also suffer with IBS. Due to the Coeliac, I have Osteo-porosis. At Christmas time, I was in a lot of neck pain, so bad I could barely move. My Rheumatologist diagnosed Cervical Spondylosis, so I have been having physio on my neck, which is easing the pain. The pain in my shoulders, well, all my muscles actually has been terrible. In Febuary, my Rheumy diagnosed me with Fibromyalgia. A week or so after, I broke down and cried in my GP's surgery... he diagnosed me with depression. I am sat here at the moment feeling very fat and sorry for myself. I am on Fludrocortisone and Sotalol & 75g Aspirin for the POTs, Etodolac for the arthritis, Colofac for the IBS, Actonel and Adcal D3 for the osteoporosis, and Omeprazole to protect my stomach from the tablets. When my GP diagnosed depression, he put me on Amitriptyline 50g, as this is meant to help with the Fibromyalgia too. The pharmasist refused to dispense the Amitriptyline, as she said it interacts with the Sotalol. She rang my GP, who rang Prof Mathias. He said I can have both as long as I have regular ECG's to check my heart isn't being affected. I have them every two weeks. Since Christmas, I have put on a stone and a half. I am usually a size 10 to 12, but know I'm having to buy a size 14 (I'm 5'2"). I can't exercise to get rid of it, I have a healthy diet anyway, due to me being Coeliac, I can't eat processed/junk food. I think it's the medication thats doing it. The weather has been really nice over the Easter, and the past few days, so I put a pair of shorts on and sat in the garden. I was horrified over the sight of my legs, I haven't really seen then during winter, as I tend to wear jeans, I looked at them and started crying...again! They go a horrible purple mottled colour, I have big reddy/purple swellings at the side of my ankles. I don't like to bother my GP with this, so I have been reading up on the internet. I think it's called Pooling. As I am wearing sandals with no socks, the blood must be sitting in my lower leg/ankle area. Is this 'normal' for pots sufferers, do any of you wear skirts? Is there anything you can do to help it? I have been told to drink a lot, and have a lot of salt, which I do, but my legs still go purple. Another thing that bothers me, is my memory. I forget the most stupid things, I couldn't remember what a spoon was called yesterday, I asked my daughter to bring a 'stirry thing' for my cup of tea! Sorry to have a whinge, but as I said, I am feeling very fed up at the moment. I can't go to work anymore, I am not allowed to drive anymore (due to my fainting) I can't even go out for a walk, due to my blinky painful knees and hip's due to the EDS. Apparently, life is meant to begin at 40. But that's when I started to go downhill (I'm 45 now). I am really lucky, in the respect I have a wonderful supportive husband, and three very helpful teenage children - one of which can drive. It has taken me just over an hour to type this, as I keep pressing the wrong keys and typing gibberish! Sorry to moan, I think I'm just having a bad day. Thanks Everyone for listening. Sandra X

Hi Willows Goodness you must look terrible in the photo if it shocked your doctor's, but if that's what it took to get them to help you... Why don't they just keep you in under observation, so they can actually see first hand what your like? I hope the injections are of some help. When I was ambulanced in last year in December, I was kept under obs in the Coronary Care Unit for 7 days, then again in April when I collapsed, I was in CCU for 9 days, then in May again in CCU for 4 days. So I am lucky in that respect, that they have seen me at my worse. Take care Sandra

Hi Persephone - Brilliant, so one day I may be able to drink again. Apart from wine, I drink Bacardi. It would be great to have a uk meet, but not just yet, as i am grounded When my heart is sorted, and I can go out of the house on my own again, maybe in a few months time. Do you know I shed tears when I read what you said about stairs, so true.. yes, I hate them, it's just so, so painful, and I get very out of breath after about 5 steps. Coming out of Warren St tube last week going to UCLH, I caused such a traffic jam on the stairs... why does everyone want to run about like maniacs in London! Speaking about the tube, in July after I saw Prof Mathias, I had to have a 24 hour blood pressure & a Holter monitor on. It was such a hot day that I was wearing a vest top. You should have seen the suspious looks I was getting with tubes, wires and a box strapped to me! Tanzanite - Yes, Prof Grahame is a lovely man isn't he. I was in his room for 55 minutes last week. He gave me such a thorough examination, When I came out the waiting area was packed, I felt all these eyes look at me when I hobbled out. It must have put him so behind. Willows - Hello, maybe I got seen to quickly because I was in my local hospital's Coronary Care Unit when my cardiac consultant made the appointment for me to be seen by Prof Mathias. He is a lovely man too. His SHO Dr Davidson was in the room with us, they both examined me, went through my notes, and put me at ease. It was at that appointment that Prof Mathias said he was going to get two of his collegues, Prof Grahame & Dr Holdright the Cardiac Consultant from The Heart Hospital to see me. He did listen to my chest, and mention the astoyle (heart stopping) I too flaked out on the corridor floor after my autonomic tests and my Atropine test, but they came to help straight away, I also had to stay off my meds for the tests. Funny you should mention headaches, I seem to always have a headache.. but never linked it to POTS, then again, i have only just found out I have POTS, so not sure what's linked to it, and whats not. I've actually got one now. I thought it was because I have new glasses for reading, it's my 3rd prescription in 2 years. Maybe it's not my glasses causing my headaches then...... actually would POTS make you sight go blurry? I don't know about bleeding under the skin, but I do bruise easy. My arms are covered in bruises from Monday when I collapsed and they tried to take bloods but my veins kept collapsing. How did your Neuro appointment go? Sandra

Thanks everyone for your comments. Just a quick question, since December I have been told not to have caffeine or alcohol, as they are stimulants and will affect my heartrate. I'm not a great drinker, but I do enjoy the odd glass of wine. Last Christmas I bought myself a bottle of Chardonay to have with my Christmas dinner. It's still there, looking at me everytime I go into the dining room! Will I ever be able to have it? or is alcohol definatly off limits? Sandra ooh, that makes me sound like a right al-key

Thank you everyone for you lovely welcome Persephone - no not a rude question at all, I am 44. I have always, as far back as I can remember been prone to fainting or feeling faint. It was something I just coped with, and the feeling of lightheadedness, it was just part of my life. When I fainted, I wasn't out for long, maybe just long enough for my eyes to close and open again. I didn't bother going to the doctors, as I felt 'normal'. It was only this time last year, when I started to faint at strange time's, eg at 2am one night, my daughter was being sick in the bathroom, and I got up to see to her, and fainted. Then about a week later, I woke up at 4am to use the toilet, when I fainted out cold again with no warning, my husband said I was out for quite a while both times. The next morning, I had a check-up at the doctors, and he couldn't find anything wrong. Then on 16th December last year, I got up, put the landing light on to wake the kids up and fainted again with no warning. Apparently this time I was fitting. My husband had already left for work, so my son called an ambulance. I was in A&E, with the monitors on, thats when the doctors noticed the tachycardia. I didn't really notice, as I had 'always' felt a bit like that. Sounds a bit strange when I say it, but you would probably understand what I mean. Then my pulse stated to go very high 180/190 I could definatly feel it then! I went out cold again. I was told by the doctor, that my pulse was 188 then stopped. I woke up in resuss. My husband and daugher were with me at the time, and they said I flat-lined and the doctor shouted crash, and whisked me away. It must have been awful for them, as they were ushered into the relatives room. I came out Xmas eve on beta-blockers. This became a familiar pattern over the next months. In May I was told I had abnormally low blood pressure, and was put on fludrocortisone. Then I was told I was being referred to The National Hospital. My first appointment there was in July for the autonomic tests, then August to see Prof Mathias, then in September for an Atropine test, and now October to see Prof Grahame & Dr Holdright. I have been quite lucky I suppose that everything has happened quickly. But it's just a bit too quick if you know what I mean. my head is still spinning. Looking through this website, and the EDS one, all the sypmtoms are all so true, I have almost all of them. As for my heart stopping when I fainted, I didn't get any warning that I was going to faint, no buzzing, no lightheadedness, I just went. I didn't actually feel any different when I came round, just really groggy, like a 'normal' faint. My husband did say they were massageing the side of my neck. Not too sure why. i asked dr Holdright about this, she said it was not that uncommon for the heart to stop for a shrot time during a faint, but mine was slightly longer than expected. The good news is that it does restart on it's own. Ernie - No I don't have the pacemaker in yet, I should hear in the next few weeks. Does anyone else have a pacemaker fitted? and if so do the faints stop? Sandra

Hi Persephone Thanks for replying. So does POTs & EDS go together then? Only for the past 4 years I have been under a rheumatology consultant at my local hospital who was treating me for arthritis. Cortisone injections into my hip joints to ease the pain, and anti-inflammatories to help with my joint pain. It looks like that was all for nothing as i have found out I don't have arthritis. Prof Mathias made the appointments with Prof Grahame and Dr Holdright for me. Dr Holdright is the cardiac consultant working for The National Hospital, and University College Hospital. Her main hospital is the Heart hospital in Westmoreland Street, it's still part of UCLH. On Monday (26th) I had an echocardiogram and yet another Holter monitor put on. She said as soon as she gets the results in a couple of weeks, she will ask me back up, and put a 'Reveal' into my chest, which is a heart monitor that stays in for up to 18 months. Depending on what that says, depends on what type of pacemaker she will use. When I had my autonomic tests at the National hospital, and they tilted the table up to 60 degrees, when I fainted my heart actually stopped for 47 seconds. When I woke up the crash team were in the room.... again! as this has happened a couple of times in my local hospital too. I wonder if this is why I was referred to her? It's great to have someone to talk to, who knows how I feel! Sandra

Hello Everyone I am very, very new to this, and feel a bit isolated. I found this website by 'Google-ing', it's reasuring to know that I'm not the only one. I have been ill for a long time with heart problems, breathlessness, joint pains, fainting... I could go on and on. During my last stay in the Coronary Care Unit of my local hospital, when my heart was racing and my blood pressure so low, it was barely regestering. I was sent up to The Hospital for Neurology and Neurosugery in London. My Doctor there is called Professor Mathias. I was put through a whole battery of Autonomic tests, I was told I had Autonomic Dysfuction. The Friday before last, (20th Oct) , I was told I had POTS. I had to see a cardiologist up in London, she said she is going to put a pacemaker in to make me feel more comfortable. On Monday 24th Oct, I had to travel back to London for a lot of heart tests. Then last Thursday (26th Oct) I had to go back up to the hospital to see a Professor of Rhuematology. His name was Professor Grahame, he said I have Ehles-Danlos Syndrome, and the reason I have been in so much pain, especially with the stairs, is that my kneecaps sub-lax or semi dislocate each time I bend them. Yesterday, myself and my daughter visited my Mum. We were just sat chatting and having a cuppa, when I fainted. Mum called an ambulance, when I was in the ambulance I had an ecg, and it showed my heartrate was 32. And I was feeling a lot better, I wonder what it was when I felt bad! By the time I got to my local hospital and was wired up to the monitors, my heart was 140. it took 3 hours before it stablised and I was able to come home. The frustrating thing is none of the doctors in A&E had heard of the conditon POTS. My arms are covered in bruises, as it took 2 nurses, and a doctor to actually put a canular in to take some bloods. Everytime they tried, my veins just kept collapsing. The doctor managed to get half a tube of blood from a vein in my hand, but that was just mainly bubbles coming out. Can someone tell me please, is this normal??? I am also feeling very weepy, I don't know why. Now I have a diagnosis, I should be happier, but I just feel scared. So I am sat here now, scouring the web for any info on either of these conditions. I am on beta-blockers (Sotalol), steroids (fludrocortisone), aspirin and Omeprazole to protect my stomach. I am also on Colofac, which is an anti-spasmodic because I have Coeliac Disease (gluten intolerance) and IBS. I also take 2 Adcal-D3 (chalk tablets) and Risedronate sodium tablets because I have Osteoporosis. Sandra