flop

Thanks tearose, Midodrine is a bit of a last shot at the moment. Unless I get a dramatic benefit from it I am having to seriously consider using a wheelchair at work. My work involves a lot of standing / walking about and making important/complex decisions whilst on the go. Whilst I haven't had syncope a work for a long time I am having them at home now. I am particularly aware of decreased blood flow to my brain at work as my concentration and thinking ability has dramaically decreased which is putting my career on the line. Does anyone else use a wheelchair to get round this sort of problem? It would be an easier decision if I was constantly blacking out rather than "just" having concentration problems. Thanks for the worry about injuries too - I'm covered in lumps and bruises at the moment. The worst bruise is actually on my hand from an IV on Monday evening. I was too ill to get home from work on Monday so had to get an IV to boost me - have never had to do that before. Flop

Congratulations! The photos look wonderful - and the sun came out to congratulate you too! I can't believe that Oxford can look so great in early March, it is raining up here further north. One of my friends graduated from Oxford and told me all about the graduation ceremonies, it all sounded so special and traditional. Your parents must be really proud of you! I guess your current challenge is your DPhil. How far into that course have you got? I suspect a lot more hard work is on the horizon so have ((((((HUGS)))))) for doing so well and to carry you on to the next step. Flop

Thanks Melissa, from the reading I've done so far it seems that the not taking midodrine before lying down is to prevent supine hypertension? My BP is actually "fairly low" when I lie down (about 105/65). I couldn't get hold of my cardiologist but talked to another dr that uses midodrine in his elderly patients. He said that as I get up such a lot at night to use the bathroom (high fluid intake = high urine output) that I should have midodrine on board at night to prevent syncope when I get up. I wonder if I would be better taking it 4 times a day so that it lasts better? Is 2.5mg a normal starting dose? I haven't really noticed any effect from it and my BP has hardly changed either. It sounds like it usually works quickly rather than having to wait for the effect to build up like with florinef? Sorry for all the questions - I want to give this the best shot I can. Flop

Hi, I wonder if the people who have antibiotic trouble are infact Lyme sufferers? Could severe antibiotic effects be used to screen for Lyme? Away from the Lyme subject - I am so lucky that I don't react to antibiotics as I have had a severe chest infection since the middle of december (eventually diagnosed as pseudomonas pneumonia) and have had at least 6 courses of antibiotics over the recent weeks! I got the usual GI sideffects, mainly nausea and diarrhoea but other than that no POTSy trouble from them. Flop

Hi Becky, I was just wondering how the new job worked out? I hope it was a success, but please let us know either way! Flop

Hi, it is a bit unusual that you were advised to take the florinef in split doses to start with. It is a steroid that takes a while to gradually take effect on the body and hangs about in your system for weeks rather than hours. Ususally doctors advise that you take all steroid tablets in the morning (uness you have Addisson's disease where you take 2/3 in the morning and 1/3 after lunch) this is because steroids commonly cause insomnia if taken later in the day. I take 0.3mg of florinef but all in one go in the morning. I haven't noticed any problems in the evenings but I have never tried to reduce my dose either. Does a bit extra in the morning stop the symptoms at night? I realise that what I've written probably applies to "normal" people and that we with POTS are not "normal" and that some people seem to be far more sensitive to medications than others so please don't think that I am being ignorant or rude! Flop

Thank you Masumeh, I will google for ProAmatine and hopefully get some more information. My Mum did a German degree many years ago and has tried her best to translate the leaflet for me but it doesn't make much sense - I think it is a bit too technical for her German vocabulary and grammar! My cardiologist has prescribed 2.5mg three times per day. Some of the info I found on line said not to take it after 6pm - what do others do? I asked my cardiologist and he said take it every 8hours, the pharmacist at the hospital just told me to follow the doctors instructions! As I got up at lunchtime today I have only taken 2 doses and will skip the evening one. I got a slight head rush but otherwise didn't really notice much effect from the Midodrine. Those of you who have described sudden effects did you start on larger doses? I am lucky that my local hospital pharmacy source the Midodrine from Germany for the patients. In the UK we have the NHS (national health system) it has many problems and getting referals and investigations is quite difficult but meds are "covered". We pay a fixed fee for a prescription (about $12) no matter what the actual cost of the drug is. I have a prepay certificate that covers me for all my prescriptions for the whole year for one payment. (I am so glad that we don't need private health insurance here yet). If anyone has any more tips on Midodrine please let me know! Thanks, Flop

I find stairs a problem too. The house that I am living in with friends has one flight of stairs to the bedrooms which I can manage if I take my time and don't carry anything. We are lucky that there are bathrooms upstairs and downstairs so if i am really organised I don't have to go up and down too much. At work there are lifts but they are very slow. Often my collegues think that I am really lazy as they will only use the lift if going 3 floors or more (28 steps per floor) but I use it for even one floor. Even when I have explained to close collegues about the POTS they still regularly forget that I can't race up and down like a normal person. I've even had people tell me that I wouldn't be ill if I just took more exercise and used the stairs! Flop

Hi, I don't usually notice my pulse racing either. I first noticed that something was wrong when I was a student and in boredom one day checked my pulse whilst standing in class - it was 135! At the time I was really athletic with a resting heartrate of only 45/min. When I had my tilt test several years later, I knew something was up within a couple of minutes because my consultant and the technician had both jumped out of their chairs and I was aware of them standing just behind the table. Afterwards my cardiologist told me that my heart rate had hit 170/min and I had been totally unaware of it. I know when I am feeling dizzy and usually then my heart is racing without me knowing. It is different when I get palpitations which I am most definitly aware of - pounding / racing heart beat with chest pains! Do other people get palpitations seperate from the tachy due to their POTS? Flop

Hi guys, thanks for the hugs and support, it means a lot to know that there are other people out there who understand what I feel like. I've cheered up quite a bit so I think the venting and hugs have helped! Crazy work hours - I know my hours seem excessive but it is what the job entails. I have always been on 56 hr weeks (on average) since starting work in 2003 so carrying on with the work hours after I developed POTS was considered normal. My cardio knows about my job and encourages me to keep working full time - I'm one of those people who always has to push myself. If I sit back and relax I actually feel much worse and my ability to cope with the POTS and even just activities of daily living decreases dramatically - it's as though my body goes on strike on me! I have managed to get my hours cut to 44/week and switched departments to a less busy job where I can sit down more (orthostatic tolerance is down to about 2-3mins at the moment from over 3 hours standing time on meds last spring. I saw my cardiologist yesterday and he has given me a script for Midodrine to add to the cocktail of pills that I am already on. He agrees that the worst of the flare is related to my chest infection but the POTS had started playing up before I got the infection. Because Midodrine isn't licenced in the UK they have to get it from Germany and the patient information leaflet is in German! I want to find out more about how to take it and doses before I start taking it. He also said that I should qualify for a disabled parking badge - that would make my life much easier, getting from the staff carpark to my office is 1780 steps (and that is if I use the lift - can't manage stairs at the moment) and takes ages and is exhausting! I think that the blackout was just a huge psychological blow. I used to have blackouts about 5 times per day until the day I started the betablocker. I had got very dependent on thinking that so long as I take the betablocker that I won't blackout so long as I listen to my body and don't push it too hard. To have a blackout creep up with no warning is very worrying. Thank you again and ((((((((HUGS)))))))) to all those out there in need of a hug! Flop

Hi Amby, can you get an EKG at the doctors office without seeing the doctor (not sure how the US system works, over here the practice nurse will record EKGs)? I'd just call them up and say you have been warned about long QT with Norpace and you want an EKG to rule it out. It should only take the doc a couple of minutes to check your EKG you wouldn't actually need to see him unless he wasn't happy with the EKG. You could always call your pharmacist to ask - it might sound better if you tell the drs office that the pharmacist says you need an EKG. Is there any info about EKGs in the patient medicine information leaflet? Sorry it's not easy for you to get this quick check done but it is important and I'm sure you'll find a way to get your QTc checked out! Take care, Flop

I know what you mean about visible veins - my body can look like a road map of blue squiggly lines! I also have fair skin. I've never asked my doctor but my theory is that patients with POTS can't vasoconstict their blood vessels (hence blood pooling) and it is because our veins dilate that they are so visible. Flop

I'd get you PCP to check your B12 levels before taking a supplement. If your levels are just a little too low it would be worth trying pills for a month or two then getting your levels checked again to see if they have improved. Essentially you can have low levels due to poor oral intake (eg if severe nausea/gastroparesis limits your food intake) but more commonly low B12 is due to a problem absorbing it from the gut in which case you can take bucket loads of B12 tablets and still notabsorb it - these are the people who need B12 injections. Hope that helps, Flop

Hi Amby, I haven't tried Norpace (Disopyramide) myself but I know my cardiologist had used it for other POTS patients with success. Disopyramide is an anti-arrhythmic cardiac medication usually used for supraventricular and ventricular arrhythmias (SVT and VT). It doesn't really fit into a specific cardiac drug class (not a beta blocker or calcium channel blocker). All antiarrhythmic drugs have the disadvantage of also being proarrhythmic (ie they can all cause rhythm problems). Disopyramide can cause prolongation of the QT interval on the ECG (EKG) which can increase the risk of an arrhythmia called Torsades de Points - a form of Ventricular tachycardia. It is important to have an ECG recorded and specifically ask for the QT and QTc to be checked - I would contact your cardiologist or the doctor that prescribed the Norpace and get this done urgently. Usually there isn't a problem but it does need to be checked to ensure that the Norpace isn't causing any problems. Hope it helps with your POTS symptoms, Flop

Hi, feeling a bit down in the dumps at the moment. I started on Bisoprolol nearly 2years ago and from that day didn't have any more true syncope / full blackouts. That was until Friday last week when bang down I went without warning. I fell from my bedroom into the ensuite shower room and cracked my head on something (probably the toilet!). I seem to be getting more and more POTSy at the moment with my orthostatic tolerance down to about 2minutes - was over an hour recently. I had a chest infection in December that I just couldn't seem to shift and have had 6 courses of antibiotics for my chest as well as nebulisers for the asthma. I'm sure that the infection and the POTS flare are related and I'm hoping that it will settle again soon. My symptoms are making work really difficult as I am on my feet a lot and am supposed to work 56 hours a week. After having to take nearly a month off I have gone back to work and have managed to get my hours reduced a bit but am really struggling. I'm worried about work as I am coming to the end of a 2year contract in August and am currently waiting to hear if I have got an interview for a follow on job. I know that a lot of you would love to be able to contemplate going to work and just can't so I am being selfish whining about this. Think I need a hug! Flop

Cardiactec - you have a PM, sorry it is so long! flop

Hi, I posted a rather rambling long load of info about different types of steroids and fludrocortisone a few days ago. Try searching for "Florinef and Cushing's" I think the post was titled something like that (sorry too brain fogged to attempt a link). With all meds you have to weigh the risks aginst the benefits - personally I am on fludrocortisone and my cardiologist i planning on keeping me on it life-long if necessary. Keep standing, Flop

(((HUGS))) Amby I'm so happy that you're happy (you could make a song out of that) I remember getting my diagnosis of POTS and being so happy that my cardiologist actually knew what was wrong with me. I was lucky that it didn't take too long for me to get diagnosed but that meant that I knew nothing about POTS. You are in the lucky position of alredy having found this resource - you will be one of the best informed newly diagnosed POTS patients out there. Welcome to the club!

Cardiactec, I am writing you a pm which I will eventually send (sorry it is way too long to post on here). My dose of Fludrocortisone was very slowly titrated up 0.05mg for 2/52, 0.1mg for 2/52 and so on until I reached 0.3mg daily. Before the fludro I had no warning at all of an impending collapse, the first thing I knew was coming round on the floor. As the fludro kicked in I started to get warnings which got longer and usually allowed me to avoid true syncope. My cardio advocates 0.3mg as the top dose for fludro but also says that it takes months to gradually take effect. Also you need to ensure that you are taking plenty of fluids and sodium for it to work (it can't hold on to stuff that isn't there to start with). Take care and give the fludro time to work before deciding about EP. Flop

Have they checked your urine for yeasts? You can get urine infections from yeast that might cause these symptoms. Good luck with your OBGYN tomorrow - I hope they find an answer for you. flop

Maxine, I'm so sorry to hear of your loss. You and your family have been through so much recently. I am glad that your mother eventually found some relief from her pain and was able to go to the hospice. Whilst I can't imagine how much pain you must be feeling try to take comfort from the thought that she has found peace and will always be with you in your heart. Best wishes at this difficult time, flop x

Pott's Disease was named after Percival Pott a surgeon from London, England (1714 - 1788). It is tuberculous (TB) infection of the spine - usually it has spread from TB in the lungs. Fortunately it is nothing to do with POTS - I think we've all got enough problems without adding Pott's disease to the list! flop

Hi Tessa, sorry to hear that you are feeling so rough after your tilt. As pat57 said you are not on the tilt table now so if your body desperately needs to lie down it will make you faint just the same way that it would have done before the TTT. I always find that after a faint I feel dreadful and it can last from hours to days - this will be the same type of feeling that some people get after a TTT. Don't forget that during the TTT the patient is forced to stay upright for as long as possible or until they faint - in real life you would have sat down long before getting that dizzy so it is logical that it will take longer to recover from a TTT than a normal POTS episode. My cardiologist always insists that I must never rest in bed all day. For example, if I get the flu I should make myself get up and sit on the couch / reclining chair. He says that allowing my body to stay lying down too much will make the POTS symptoms worse as my body won't be used to trying to get the blood up to my head against gravity. Take it easy and do what you can. Don't push your body too hard, little increases in standing / activity are much better than trying to go straight back to what you could do before. Hope you are feeling better soon, flop

Hi Persephone, standing / walking with POTS is bad enough so to have to do that on a painful foot must be terrible. What sort of shoes are you wearing? I know that your Drs told you it wasn't broken but people with minor fractures or ligament injuries are often advised to wear shoes with stiff soles (like old fashioned lace-up school shoes) to support the foot and reduce movement in the mid and fore foot to allow the injury to heal. On the other hand a special insole to support the metatarsals (sounds like this is where your pain is located) might work - not sure if you would need your Dr to refer you to get one though. I hope the pain settles down soon (make sure you take any pain relief (even if just paracetamol) regularly rather than waiting until it is really sore - it works better that way). Take care, Flop PS - ages ago I think you sent a message via the Meet People list, PM me if you would like to meet up some time.

Thanks Sophia, it was fun to drive on the track - I wish I could share the experience with you properly. The pay to drive thing here is just like on your NASCAR tracks except that most racetracks in the UK are designed with lots of corners and chicanes (?spelling) more like Formula 1 Grand Prix tracks. Do you have a NASCAR track anywhere near you? Why don't you write and see if they'd let you have a ride arround as a special treat - if you don't ask you won't know. I actively try to avoid the whole "I'm ill so please be nice to me" thing but sometimes you have to look for the perks to cheer you up. Keep standing, Flop