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