flop

I seem to have the opposite - I have huge veins all over my body. I think that all of my blood volume is in my peripheral circulation rather than in my head. I often end up with people asking me if I mind letting the med student do my bloods / IV because I look so easy to stick. I'll let a student have 2 goes max then ask for someone experienced, I know they have to learn on some one but there is a limit to my pain tolerance. Because of the big veins I often get grey / trauma sized canulas inserted - just because they can. It is useful if I just need a bag of IV fluids to get my BP up as they do run a lot faster through a large IV so I'm home quicker. Sorry if I've made everyone jealous - the down side is that the briuses can be "huge" and last for weeks if I am not careful to keep pressure on the site for ages after the needle is taken out. I've even had my blood clotting and bleeding time checked as I bruise so badly. Flop

I mostly get told how white / pasty / ill I look so it is a nice change when someone says I look well. Unfortunately when they say it is usually when I'm feeling particularly bad. I think that perhaps they think "doesn't she look awful" but want to say something nice or distract you from feeling ill. I try to treat those comments the way I do being asked "How are you" - I just reply with "fine thanks" or "not so bad" as I have learnt that people aren't really interested in how you feel they are just making polite conversation. I know how upset you must be feeling with this "just a research doc" but please give him the benefit of the doubt and stay involved in his research - you never know it might lead to a breakthrough in our treatment. One website I've found is www.butyoudontlooksick.com I'm nothing to do with the site and am not trying to break any forum rules. There is a good analogy on the site about "spoons" - how a lupus sufferer explained her limitations to her best friend. I hope you don't stay angry with the doc for long - it's not worth the energy, Flop

Hi Lisa (and everyone else), I'll have a go at posting links to pictures of acrocyanosis. If they don't work, either type the web address into your browser or go to google and do an image search for acrocyanosis. I did find a really good picture somewhere a few weeks ago but I can't find it again now. www.ipej.org/0602/raj2.jpg www.emedicine.com/ped/topic2860.htm ok, fingers crossed, Flop PS - didn't work, so I've edited it to just show the web addresses.

Hi Morgan, when I first started to have palpitations (a few years before the syncope started) I was thoroughly checked out. This was because we have a family history of hypertrophic cardiomyopathy. At that point I had a holter monitor for 7 days. After that I had an event recorder to place on my chest to record palpitations (not much use as the palpitations were about 180/min for about 15-20seconds only). Then I had an external loop recorder for 6 weeks - it is like a holter but tapes over itself and only saves an ECG if you press the button - that was awful as it was in the summer and the heat and the sticky electrodes really messed up my skin. I now have the most definitive event recorder - a reveal device. It is a small box about the size of a USB memory stick implanted under the skin on my chest. The frustrating thing is that between being listed for the reveal and getting it inserted my medications were changed and I have not had the palpitations that I was getting. They were very different to the POTS tachy (I'm not aware of sinus tachy unless I actually count my pulse) but my beta-blockers seem to be suppressing them. I'm glad that they're not happening anymore but it would have been nice to get a print out of one so that we knew what rhythm I was in at the time. I have also had a holter on for 48 hrs whilst I have the reveal in. This was because I seemed to be quite bradycardic and my cardio wanted to see what my heart rates were doing over a full day. Sorry that lot is a bit waffly, basically the sort of monitor depends on what you are trying to capture. If is is something that you are not aware of then a holter is probably better, for definite palpitations an event recorder might be better. It is probably best to discuss your symptoms with your cardiologist / ECG department and let them select what type of monitor is most likely to get them useful information. Flop

Hi Maxine, you are quite right that a small proportion of people have allergic reactions to the type of contrast given for CT scans - it if often iodine based. The warm feeling you mentioned is often described as a hot flush and is normal. The contrast given for MRI scans is very different and has much lower risk of any kind of adverse reaction. I've had MRIs both with and without contrast in the last year. Whilst I don't particularly enjoy being in the tunnel the scans themselves have been ok to have done and no reactions. I have fairly severe hay fever, asthma and eczema so I asked specifically about contrast reactions and was told the in MRI they are virtually unheard of. I hope your scan gives your doctors useful information to guide your treatment. Flop

Hi Sandra (((((HUGS))))), sorry to hear you're having such a rough time. I'm in the UK too and have just started wearing compression stockings. My cardiologist referred me to the stocking clinic at my local hospital where I had the doppler pressures in my legs checked and was measured. The clinic gave me 2 pairs of stockings that they ordered in for me. Your GP can prescribe certain types on an FP10 prescription form but I think the stocking clinics can prescribe a wider range. I think the "allowance" is 2 pairs every 6 months so you have to wash them out daily. It is important to get measured properly. Don't bother with the "flight socks" that you can buy in the chemists - I had been diligently wearing these for 2 years but now realise that compared to medical compression stockings they do nothing at all. At the moment I wear knee-high stockings, the clinic were reluctant to give me the 40mmHg ones that I requested but I have adapted to them very well. Next time I go I will ask to try some full leg ones to see if I can tolerate them. When you are sitting (especially outside) I'd advise you to sit with your feet elevated, if you can get your feet higher than your hips it will help blood to flow in the right direction. Hope you're feeling a bit better soon, Flop

Hi Lisa, this sounds like acrocyanosis - the mottled discolouring of the legs that can happen when POTS patient's stand upright. I was reading something about this last week (if I can find the link or a picture I'll post it later when I have more time). It was initially thought to be due to gravity pulling blood into the legs but is now thought to be possibly due to reduced blood flow to the skin of the legs (mechanism unknown). More later, Flop

Oh Amy, not another PICC problem - you have had more than your fair share of trouble over the recent months. Others can now see why PICCs for IV fluids are only considered as a last resort. I know yours is for IV antibiotics which is rather different. Sorry can't give any advice on PICC/PORT/Stop Rx - you will have to be guided by your doctors. What does your cardiologist think about a port with the pacemaker? ((((((HUGS)))))) Flop

A gastroenterologist would certainly be able to advise about gluten sensitivity. Coeliac disease is caused by gluten sensitivity and eating gluten containing products causes damage to the lining of the small bowel, which inhibits absorption of all foods and often causes diarrhoea. Coeliac disease can be tested for either with a duodenal biopsy taken during an endoscopy (camera test) of the upper digestive system. There are also blood tests that can detect coeliac disease. If you do get scheduled for a test it is important to continue eating gluten containing foods until after the test - cutting out gluten can cause a false-negative result. As far as I know there aren't any such specific tests for dairy intolerance. I would discuss with your PCP / gastroenterologist before cutting out any specific food groups. You can supplement most dairy products with soya alternatives, just make sure that they are fortified with calcium and vitamin D to prevent osteoporosis. Hope this helps, Flop

Hi Deucykub (and everyone else too), sorry I didn't post a reply when you asked. I got all caught up in my job interview (still waiting the outcome of that) and then my eventful hospital stay (I'll post seperately about that). I haven't spoken to my cardiologist since our disagreement over the wheelchair - I have an appointment in a couple of weeks so I'll see how that goes. As I couldn't get in touch with my cardiologist I e-mailed my EP. (We ofter communicate by e-mail to save me travelling to the hospital where he works). His initial response was to say that he didn't favour a wheelchair as it may ultimately cause reduced orthostatic tolerance. We had a long conversation backwards and forwards over the e-mail and I explained my work situation and that I couldn't go on working and being as symptomatic as I am. He knows that it would be a case of surviving 18 months of a training scheme before moving to a permanent job where I could be office based and work part-time. His final reply was "I think you are right from your life's point of view to consider use of chair to get you through the relevant training jobs" If doctorguest is about I would very much welcome his/her comment on wheelchairs. I am hoping that I can use a chair for 3-4 hours a day at work and hopefully invest the extra energy in more exercise in the evenings. Sorry this seems to be such an on-going saga, it's an important decision for me. Flop

Hi Donna, I think that most of us with POTS go through phases of depression, especially with the frustrations and misunderstandings of our condition. Florinef can increase your appetite although it doesn't directly cause you to gain weight the incerased appetite cetainly leads to weight gain. Have you tried munching on things like celery and cucumber that have virtually no calories but take time to eat? Pretzels are high in salt but low in fat (not the flavoured variety) so good for POTS and the munchies. Also drinking water can make you feel more full. Does your doctor know how you are feeling? They can factor your low mood in when they are selecting medications for you. Your doctor can also help to tell if you are clinically depressed (versus having a normal reaction to being ill) and might decide to try a med like an SSRI to help both depression and POTS. Everything needs to be tailored to your condition so your PCP is probably in the best position to advise you. ((((HUGS)))) Flop

Hi Maxine, I just wanted to add my support. You are going through so much at the moment - lots of healthy people wouldn't cope with the stress that you are dealing with. I find that my POTS is worse when I am stressed so it may be your body's way of telling you that you need to rest more. I know that it is easy for me to tell you to rest but that at your end that probably seems impossible. I agree that seeing a good counsellor can help you to balance / manage your stresses. You need to separate all of the issues out and only try to deal with one at once, as someone else said you are not superwoman and no-one else expects you to be either (except possibly yourself). Try to put 30 minutes aside every day for "me time" and do something just for yourself. This could be anything you enjoy (not something you need to do) - like listening to music, a craft / hobby, reading, soaking in the bath. During that time you are not allowed to think about anything except what you are doing. It can seem hard at first to make this time when you are trying to do so much but once you are in the habit it makes you function better at other things so the time pays for itself. When my GP suggested it to me I thought he was being daft but it really has helped. I do silly self-indulgent things like painting my toenails - pointless really as I wear compression hose and no-one sees my toes! I hope that gradually you will be able to face your stresses one at a time instead of trying to juggle all of them at once. Best wishes, Flop

Julie, ah it makes more sense that you have POTS too. With your screen name I had assumed it was just Mack who was ill. I was worrying a bit that you might have an undiagnosed problem. I have POTS and certainly have the same symptoms that you describe after bending down. I think it is also fairly common amongst "normal" non POTS people but people with POTS are more likely to experience it. Flop

Hi Morgan, sorry to hear your pacer is causing you concern. I have quite an ugly, sensitive scar from where I had my Reveal device inserted. It has settled and got less sensitive as time has passed. You can get special "scar reduction" gel patches to put on that are supposed to flatten and fade hypertrophic or keloid scars. If the sensitivity is bothering you it might be worth asking your doctor about them. I think that you are really more concerned about the actual pacer than the scar though? The tips of the pacing wires gradually develop scar tissue arround them where they are in contact with the heart muscle. If your interogation was ok and you are aware of paced beats then it is unlikely that you have displaced the leads inside the heart. However it does sound like you might have disrupted the pocket that they put the pacing box in. Please don't fiddle with the box - it may well be able to flip over but that could pull on the pacing wires. They usually leave a loop of slack wire coiled behind the pacing box but there have been case reports of people twiddling their pacers and needing to have them replaced. Hopefully your cardio will be able to advise you when you see him/her. Perhaps the box can be sutured again without needing to replace anything? Flop

When you bend down as you are describing your head is lower than your heart so lots of blood is going to your brain. If you suddenly straighten up and stand up your head is higher than your heart and a proportion of your blood is displaced downwards (gravity pulls it towards your feet), this means that the brain suddenly gets much less blood that it was when you were bent over. This is a common reaction in people with a normal cardiovascular / autonomic system. It can take a few moments for your body to balance the blood pressure again. You do need to be really careful as there is a risk that you could black-out / faint when standing up suddenly. I would advise you to do low down tasks in a squtting position rather than bending from your waist (squatting is also less stressful for your back). When you want to get up, straighten up slowly, sit down on a chair / step and wait a moment before standing up all of the way. Be careful not to jump up suddenly and dash off (like to get the door or answer the phone). I understand that your son has POTS but you don't? If you get a lot of dizzy spells it would be worth asking your PCP to check your lying and standing blood pressure and heart rate (not just after standing but several times while you stand). Take care, Flop

Hi, I started Paroxetine (a different SSRI) in the autumn for my POTS. The side-effects the first day I took it were awful - I felt really drunk / drugged and had to get a taxi home from work at lunchtime. The occupational health doctor at work persuaded me to try half a tablet daily from then on. I reluctantly took it and agreed with him to stick with it for at least 2 weeks. To start with I was really nauseous, hardly ate anything, wanted to vomit and still felt drunk. Over the 2 weeks the symptoms gradually settled and after 3weeks I ventured back on to a whole tablet. I have now been on it and stable for several months. I know that a lot of us are sensitive to meds and need to gradually introduce things to our systems. I would be concerned about constantly stopping and starting an SSRI. I would talk to your doctor about possibly taking a small dose continuously - your system may well adapt to that better than a 2 week regieme. Although it has been prescribed for your PMS you may well experience an improvement in your POTS symptoms too - my SSRI was prescribed for POTS and does seem to have helped a bit. Basically you need that appointment with your doctor to discuss these issues and how they relate specifically to your health. You mentioned a rash and wondered if it was an allergic reaction - you should get that checked out. In the UK pharmacists will advise on things like possible drug rashes, it may be worth you asking a pharmacist if you should stop the SSRI if you can't get to your doctor soon. Good luck, Flop

I also can hear my heart beat in my ears (more on the left). Also I have realised that if I pull the bedcovers up round my neck that I can hear my skin rubbing against the sheets over my carotid pulse - that was really wierd until I worked out what I was hearing. The pulse that I hear in my ears is worse when I am reaching up high or have been bending down, most of the time I don't notice it or it isn't there. A lot of (healthy) people complain of hearing their heart beat at night especially when lying on their left side (heard at night because it is quiet then). I wonder if we are just hearing a normal heartbeat but we are more receptive / sensitive to things like that especially when our bodies are stressed? Like we "tune in" to our heartbeats subconsciously?? No real help I'm afraid, just my rambling thoughts. Flop

The smallest my pulse pressure has ever been was 96/90 during my tilt test - I was barely conscious!

mom4cem - thanks for adding the electrolyte issue. You are quite right that disordered Potassium and Magnesium levels make you more susceptible to cardiac arrhythmias. Can you get your electrolytes checked anywhere Linda? Flop

Tessa, I didn't realise that salt tablets weren't available in Spain. I take slow sodium but other people report that they have more benefit from salt addedd to their food rather than tablets. It might be useful for you to have a 24 hour urine sodium level measured. There was some research done by Prof Hainsworth in the UK which suggested that POTS patients with a 24 hour urinary sodium level of less than 170 mmol/24hr would benefit from salt loading. If you got your urine levels checked it might be a pointer as to whether you are putting enough salt on your food. (it is the whole 24 hour sodium you need not a spot urine sodium concentration). Midodrine isn't licenced or made in the UK but the hospital pharmacy get it specially delivered from Germany (on a named patient basis). If you can't see your doctor until Tuesday you need to ask yourself if you are well enough to go to work on Monday - only you know how you are feeling. Take care, Flop

Katie, I'm glad you've seen this thread and posted - when I first read it I thought it would be something you could advise on. Congratulations on being pregnant, I hope everything goes smoothly for you. Flop

Hi Linda, sorry to hear that you are having rhythm problems. Atrial flutter that comes and goes can be quite common, usually called paroxysmal atrial flutter. Cardiactech is quite right in saying that atrial flutter can be ablated with a high sucess rate. Bradycardias at night are also common and usually not too concerning (I have sinus brady of 30-40 at night on holter and episodes of 2nd degree Wenkebach block at night - previously was a competitive swimmer). However if you are having marked bradycardia during the day it should be checked out especially if it is making you dizzy. I can understand you being concerned about ablations and POTS. There was some reseach about POTS and ablations that showed that they should be avoided. The type of ablations that were done in the trial were "sinus node modifications" to try to slow down the sinus tachycardia that is part of POTS. The patients didn't get sustained benefits and several ended up more symptomatic than before the abation was done or needing to have pacemakers implanted. There is a big difference between ablations for the POTS sinus tachy (as in the above trial) and ablations of abnormal pathways to stop arrhythmias or ablations for atrial fibrillation/atrial flutter. With the symptoms that you are describing I think that your doctor's suggestion of seeing an electrophysiologist is very sensible. It is important that the EP doctor is knowledgable about POTS so that they know which type of ablations should be avoided. I'd advise you to make an appointment with the EP and see what they have to say - you can always ask them to write down / spell out difficult terms so that you can research them afterwards. Good luck, I hope you find some answers. Flop

Tessa, I'd advise you to contact your doctor and let them know your symptoms and blood pressure readings. They know you best and can hopefully advise. So many of us put up with extreme symptoms that it can be difficult to know when to call the doctor but I think this is one of those times when you need to be evaluated. I was just wondering about your Bisoprolol dose - have you ever been on lower doses? Did they work? I wouldn't advise changing your dose unless you discuss with your doctor first. My cardiologist started me out on 1.25mg once daily, it was then increased to 1.25mg twice daily. When my symptoms got worse recently he wanted to increase my beta blocker but was reluctant to go above my current tiny dose. He said that at low doses you get the vasoconstrictive benefits of the bisoprolol but at higher doses it actually causes low BP (beta blockers are used for treating high BP after all). Sometimes your body changes how it reacts to medication that you may have been on for a long time. I see that you have had trouble getting meds compounded / not available. Where abouts are you living? I'm in the UK and Midodrine isn't licenced over here but my cardiologist gets it via the hospital pharmacy from Germany for me. I hope you doc can advise and that you improve a bit soon, Flop

thank you - that was a really helpful reply and I loved the cookbook analogy! Flop

I've just looked up reglan (UK brand names are different to US ones). It is Metoclopramide (often called Maxolonin the UK). I don't have gastroparesis (as far as I know) but I often have problems with nausea. I have tried many different anti-emetics and have found that metoclopramide works best for me. It hasn't caused any side-effects or triggered POTS symprtoms for me. If your doctor is recommending it why not give it a try and see how it effects you? Good luck, Flop