flop

Thanks for the link Melissa, I'm trying to find it locally in a store as I am always out at work when deliveries arrive so collecting them from the depot (30miles away) is a real hassle. Oooh - just had a thought, my Mum's on holiday this week so maybe I could get it delivered to her address? I'll have to ask if she has any plans to go away. Flop

Lucky you for getting hold of a copy. It was recommended to me by someone last month and I tried to get my local bookstore to order it but it wasn't on their electronic catalogue. Recently it was reviewed in "The Times" in the UK so hopefully the store may be able to get it now (I have the ISBN fron the newspaper review). It is supposed to be a book that both doctors and patients should read. Sounds wonderful to have a book written by a doctor who has been a patient himself - can't wait to get my hands on a copy. Flop

Hi Mary, I think that you have to be aware of the difference between taking a nap and just generally lounging in bed all day. My cardiologist banned me from staying in bed all day even if I am ill with a bug - he said I must make myself sit out in a chair with my legs down so that my body still has to work against gravity and blood pooling. Whilst my symptoms are much better if I lie down, the fear is that too much lying down and the body will cope less well with being upright when we try to stand / sit. I often find that I am wiped out when I get home from work and sometimes taking a 45 minute nap in bed gives me the boost I need to make it through the evening (by that I mean being able to sit at the table for dinner and watch some TV or read this website). Especially when school is out it is important for you to plan your day with particular aims and objectives, however small they may be. Some days you will feel worse and might not manage what you wanted to do but actually trying to do things within reason is good for you. Most of us know all too well that rushing about doing too much is a bad idea (usually pay for it the next day with worse symptoms), but equally allowing yourself to do nothing is probably as bad. I realise that for some on here cleaning their teeth and changing pyjamas might be a huge challenge but keeping up with the activities you can accomplish is thought to help prevent deconditioning which can be a disaster for POTS patients. I hope that lot makes sense and doesn't sound like I am preaching. Basically I mean, listen to your body and rest when you have to but keep active within your limitiations. Enjoy your holidays and I hope that you rediscover reading, I used to love it so much as a teenager. Flop

Hi Erica, welcome to the forum. I'm glad to hear that you have found a doctor that has identified your condition - somehow having a label on your illness makes you feel more "genuine" (it shouldn't as we all know we're ill but sometimes it helps others recognise it). Getting the right diagnosis (your doc sounds knowledgable) is the first step on the POTS journey. Some people are lucky and find the right med straight away but I think it is more usual for us to have to try different meds before finding the right one (often a combination) for us. Don't be disheartened that the Toprol XL wasn't an immediate success, it will take time for you to work with your doc to find the right prescription for you. Good luck on Tuesday, Flop

Yay another pickle fan! I was out for a meal at Frankie & Benny's last night with friends and family. Whilst I had a chicken dish several people choose burgers, when they removed the pickle slices from them I immediately offered to gobble them up for them. Also pinched quite a few of the olives from my sister's salad! I have a very sweet tooth (a good combo for me is sweet and sour sauce) and love puddings like banoffee pie. If I eat sweet stuff after a meal I'm ok but if I have cake on it's own I tend to get a sugar high and my heart rate soars for a while. This can be useful if I'm feeling dizzy and have a slow pulse as the sugar seems to boost it, but if I am already tachycardic I avoid the sweet stuff. Flop

Hi, there are previous threads about birth control. Some of the board members have had problems with the pill, but I have found that they at least don't make things worse, whilst others do much better on them. The no-periods pill has only just got FDA approval and I think that a lot of the women in the trials dropped out because of erratic bleeding on the pill. I personally am sceptical about taking brand-new meds as there isn't as much experience or long-term safety data available. Why don't you talk to your PCP or Gynae about the different options available? A lot of doctors allow you to manipulate your periods with the normal pill to avoid bleeding eg whilst on holiday or during exams. Flop

((((((HUGS))))))

Mary how long a summer break do you get in the states? In the UK the schools are just starting their 1 week half-term holiday, and will have another 7 weeks of term to go before the summer break which is 5 - 6 weeks long. Flop

Hi Mary, seizures, like blackouts, can be very difficult to diagnose. There are many different types, some of them the patient collapses in and others they appear to be awake. Did anybody else see the episode? It can be really useful for your doctor if you can get an eyewitness to describe what happened to the doctor. Basically as with any new symptom that concerns you the best thing to do is report it to your doctor. Hopefully it was nothing to be concerned about and won't happen again but best to get it checked out. Flop

Hi Mary, the books question is a good one without a really good answer. I find that carrying things makes me really dizzy, but that walking a lot makes me really tired. Would it be too embarrassing to use a wheeled case for your books (like a flight attendant or buisiness man's trolley case)? Flop

Hi Maxine, I can feel really potsy after eating too. I find snacking during the day (low fat, high salt foods of course) then eating smaller portions at main meals seems to help. I also have to let my food cool before I eat it - hot food and drinks seem to be worst for me, I also have to avoid spicy food. I know you said you don't want to ask your husband to cook but maybe he could just help out a little bit at the end of the prep? Perhaps you could ask him to do those things that need activity and standing up just before sitting dowm to the meal, like mashing potatoes and making gravy. Do you have a stool that you can sit on whilst cooking? Hope you find a workable solution soon, Flop

Hi Mary, welcome. In the last 2 weeks there has been a topic about comprssion stockings and hot weather - you might find some useful tips there if you flick back through the last couple of pages or search for compression and heat. Here's to fans and breezy weather, Flop

Hi Jennifer, it is quite common to have both a gastroscopy (OGD) and colonoscopy when looking for causes of iron deficiency anaemia. They need to do both tests to check for anything that may be causing bleeding, ulcers and polyps are some of the the causes that are simple to treat once you know thay are the problem. Some people do have stool tests done (testing for faecal occult blood) but they are more of a screening test and I'm not sure that they are sensitive enough for investigating once they have found anaemia. The alternative to colonoscopy would be a barium enema but from what I've heard the test is not as accurate and much more unpleasant to have done. Good luck and I hope they find an answer for you. Flop

Hi, as several people have said your symptoms do sound more like a stress related POTS flare than a gadolinium reaction. I think I had a mild allergic reaction to the gadolinium when I had my first MRI scan last summer. I have problems with severe hayfever and was on regular antihistmaines and oral prednisolone at the time of the scan. About 10mins after the contrast was injected I had a bit of a sneezing bout and my eyes started to itch and water. I didn't want them to stop the scan so I kept quiet. As I lay there I thought that my breathing was tightening up (I do have asthma) but then I wasn't sure if I was thinking myself into being breathless and worrying unneccesarily (I'd been in the scanner over an hour and was feeling a bit claustrophobic). When they sat me up I felt really dizzy so I was wheeled to the changing cubicle. I took several puffs of my salbutamol inhaler and my chest settled back down. After a while I thought I'd better report my symptoms to the staff. Eventually the radiologist came and listened to my chest with a pathetically cheap stethoscope and said there were only crackles no wheeze so it wasn't a reaction? I had a second MRI scan a couple of months ago but they didn't use any contrast. Take care of yourself, the usual fluids, salt, rest, and hopefully you'll be feeling better soon, Flop

Jess, hope you're feeling better soon. I'd certainly back what Dawn said about getting up regularly - spending too much time lying down can result in worse POTS problems when you do try to get up. Even if you can only sit up with your legs dangling over the side of the bed, don't let your body forget what it has to do to combat gravity aided venous pooling in our legs! Take care, Flop

Hi Angela, I'm glad to hear that the stress test wasn't as bad as you had feared. I think that the heart rate increases from POTS make interpreting stress tests in us rather difficult, especially as we often only manage a very short time on the treadmill. Don't be suprised if the result comes back as "inconclusive" - that doesn't mean that you have ischaemic heart disease, just that it is difficult to read your test, Flop

Don't worry - they won't have you walking for 3 hours. That is probably the length of time you will be in the department. By the time they have got you booked in, changed into a gown, prepped your chest and stuck on the ECG leads etc then you do the actual test (anything from 1 to 20 mins for the superfit) then they monitor you whilst you recover and your heart rate slows back to normal. I had my stress test before I developed POTS (they were checking for exercise induced arrhythmias) and got to the stage where I was running on the treadmill (15 mins completed). I'd recommend that you tell your employer that you won't be in after the test - then if you feel ok it will be a bonus and you can always call work and go in if you feel up to it. You have to learn to live life at a different pace with POTS and listen to your body. Hope it all goes ok for you, Flop

I was going to suggest Labarynthitis (inner ear infection / inflammation). Sounds like you have had your ears checked before but if not done recently might be worth seeing the ENT docs again. Sorry, no other suggestions - just my deepest sympathies, why do we always seem to get kicked when we are down? Flop

Sorry to hear that you are being troubled by nausea. Hopefully it is just a transient thing that will resolve. Have you changed any of your meds or the foods you eat recently? I had terrible nausea for several weeks after starting on Paroxetine (lost quite a bit of weight too). I posted a while back about natural nausea relief. Ginger as already suggested is good (even if taken as crystalised ginger or proper ginger biscuits with ginger lumps in). Another remedy that I find very useful is fennel seeds. You can just hold one in your mouth or chew them slowly, they taste of aniseed and I now rather like them. The Indian doctor who introduced me to fennel also suggested whole dry cloves and cardamom pods to chew / eat - I haven't tried them as the fennel worked so well. Hope your stomach settles soon, Flop

Thanks Madeline, I've only been wearing my compression stockings for a few weeks. Previously wore all cotton socks so no problem with sweating, but these nylon & lycra ones are really sweaty. I'm worried that my feet are going to smell terrible by the end of a day at work. Do you just use a normal underarm spray antiperspirant on your feet or do you get a special foot version? I looked today and they have foot sprays in the supermarket but at high prices compared to the usual women's sort. Thanks, Flop

Not having worn compression before in warm weather, I'm going to have to ask a silly question. Does putting powder on your feet help with the heat / sweating or just make a mess?

Hi Pat, when I'm feeling really dehydrated I get packets of rehydration salts from the pharmacy - it is basically a balanced mix of salts and sugar to mix with water that is designed for kids to use when they have diarrhoea. They don't taste wonderful but slowly sipping the mixture all day does seem to help more than just water or juice. Diarrhoea and POTS really don't go well together so make sure you take plenty of care of yourself over the next week or so. If you can, off-load any tasks that you usually do to someone else. Some things that point to how dehydrated you may be are looking at your tongue and inside your cheeks - the surfaces should be moist. Also try pinching up the skin on the back of your hand - it should spring back into shape fairly quickly. Make a note of how often you are passing water, how much you pass and how dark/strong it is. If you are worried that the diarrhoea is causing you to be too dehydrated then you will need to be assessed to see if you do need IV fluids. The health system in the UK is different to that in the US so I will let someone else post about where to go for IVs - if it is an emergency the ER may actually be the best place. Hope you are feeling better soon, Flop

Sorry to hear that your work are putting so much pressure on you. My views may be coloured by my own negative experiences with an employer, but I would say that you should put together some information about how good you really are at your job. Does your store have CCTV cameras in the shop? If so can you get hold of any pictures of you with the secret shopper or you on that day at work? It may help others see how you were dressed and presented yourself. Surely thay can't sack you on the grounds of messy hair? I know that a gut instinct is to just walk out (and this may ultimately be what you decide to do). However you need to take a long look at all the facts before making a big decision like that. Consider how long you have worked there, how you get on with your co-workers (not the supervisors), the financial consequences of leaving..... Sometimes it is worth a fight. Take care, Flop

Sorry should have said in my previous post that slow sodium is a modified/slow release form of salt tablets. They have a matrix that gradually releases the sodium into your GI tract so you don't get that overwhelming nausea that conventional salt tablets can cause. I don't put salt on food as I can't stand the taste! Not sure if "Slow Sodium" is available outside the UK? Flop

Julia, that sounds awful! I would write down what discussions you have had with which seniors on which days (I know how difficult it can be to remember later on with our brain fog). Then my suggestion would be to write a polite letter asking them to modify your rota to 4 days per week "as per discussion with... on ....date". Politely explain that with your medical condition (you don't have to explain what is the matter) you can work 4 days which is over the agreed min of 20hrs, but that more shifts are too demanding and not medically possible for you and that you are including supporting evidence from your doctor. It is too easy for people to "forget" conversations - if it is in writing they are more likely to stick to any agreements. They can't sack you for doing the above. I think at the end of the day you and your doctor are right you have to listen to your body and put your health first. See if you can get your shifts back down to a more manageable level before having to make a decision about working. ((((((HUGS)))))) Flop