flop

By red hives from itching do you mean that you get swollen red wheals after scratching your skin? If that is what you mean then, yes I get it too! - it is called dermographism (literally "skin writting") you get blotchy lines if you scratch your skin with your nail or anything firm. Typically I will get tickly area on my leg and automatically scratch without thinking, then I get the red itchy hive that is worse than the original tickle! Flop

If medicines come in a foil/plastic strip there is usually a batch number (BN or Lot) stamped on one end of the strip and an expiry date on the other. Some medicines like nitroglycerine tablets loose their potency very quickly but most meds last quite a long time. Personally I have taken pain-killers that were over a year past their date but they worked fine. I think it is like tinned food - guaranteed to be good up to the use by date but probably ok for a while afterwards. The leaflet I was given with my Epi-Pen says to keep an eye on the date and replace when due to expire. But it also says that using an out-of-date Epi-pen is much better than taking nothing if you don't have a fresh pen available. Flop

Hives that are brought on by heat, showers, exercise or stress are called "cholinergic urticaria". It isn't a true allergic reaction but the body releasing histamine in response to the heat / stress. I believe that eating spicy foods can trigger the same reaction. A combination of H1 and H2 antihistamines is usually the best thing to prevent these flares of itchy hives. Flop

Hi Kayjay, have you thought of trying the Mirena IUS? Insead of having copper like a normal coil (which can make periods heavier) it has a low dose of progestogen hormone. The hormone is released directly into the womb so hardly any gets into the rest of your body. Most women find that with a mirena their periods become much lighter and shorter and for quite a few their periods stop altogether. In the UK it has become the treatment of choice for heavy or irregular bleeding. I was planning on having one myself but am taking Yasmin for acne and doing well so my gynae said to wait and decide next year. Flop

Hi Kayjay, I'm not aware that POTS itself can cause spotting between periods, but stress that upsets your hormones certainly can cause spotting. I guess the stress of chronic illness could contribute to spotting but to have it for such a long time wouldn't be typical. Have you had a full gynae check up and specifically asked about the spotting? Are you using any hormone contraceptives? Flop

I find that simple carbs are the worst for me - if I eat something like a sandwich or a cake I will have bad POTS symptoms afterwards. I try to stick to protein and vegetables, the carbs in vegetables seem to be much easier on my system, fruit has too much sugar. Avocado has become one of my favourite foods as it needs no preparation, is easy to eat and digest, gives me energy and doesn't trigger a POTS flare. Flop

I am the type of person who was always top in school, got excellent exam grades, went to a top university and got a first class honours degree. I am also dyslexic so used to having to work hard to overcome educational difficulties. when I first developed POTS I was having a lot of fainting episodes but functioned fairly normally in between (if i didn't try to do too much). I could go to work and have normal concentration. Over the years my symptoms have changed, and I at least partially blame chronic tiredness for some of my problems. I just find that my brain doesn't hold information well. For example I am in the process of buying a house at the moment. My solicitor has posted to me lots and lots of paperwork to do with the sale, surveys, mortgage paperwork etc. I can sit down and read the stuff but I can't think about it properly or remember what I have read. Trying to make a "to do" list for myself about the house purchase is a nightmare. I have managed to get through it all in the end with the help of highlighter pens, notes in the margins and copious lists. I had to make sure to do this work when I was feeling at my best, rested and well hydrated and sitting in a chair with my feet up on a stool. Lists and beepers are the way to go. Without my diary I would be totally stuck - I must look at the page a dozen times a day as I no longer trust my memory. If i don't write down things like "library CDs due back" in the diary I will forget to go to the library and end up paying loads of fines for late returns. If you son has had a full year out of school, have you thought about him taking fewer subjects at least for his first year back? If he had gaps in his timetable and had somewhere quiet that he could rest / sleep between classes it might help him achieve better grades in the classes he takes. Good luck, Flop

I have ongoing neck pain following a car accident in 2005. It is muscluar pain rather than an instability but I like to feel as though the whole of my head and neck are supported, I can't bear having a gap under my neck. A few months ago I found a pillow in Ikea Gosa Lilja which is soooo comfortable. It was really expensive but so good that I have bought a second one to keep in my room at my parent's house. It is designed for side sleepers (has a cut-out for your shoulder and a raised bit to fit against your neck) but I tend to roll over a lot at night and find this just as comfortable and supportive when sleeping on my back. I have previously tried Ikea's other shaped pillows but not found them comfy. Flop

I don't think that we are more at risk than the general population but you could use a POTS diagnosis as a leaver to get Tamiflu if you are unlucky enough to catch swine flu. I think that the biggest issue we would face would be dehydration from having a temperature and / or diarrhoea. I have bought some dioralyte sachets and loperamide capsules along with paracetamol and ibuprofen to keep in the cupboard at home in case I am unlucky enough to catch it. I haven't stopped going out or changed my day-to-day activities. I'm just being extra careful about hand hygiene and pushing doors open with my feet or elbows to avoid touching the handles. Flop

Hi, I'm not currently taking Fludrocortisone (came off it by accident when the pills were switched to ones that had to be kept in the fridge - I was forgetting to take it all the time so my doc said to try without it). When I first developed POTS I was very tachycardic and had low blood pressure all the time. On my TTT I had a heart rate of 170/min and BP 96/90. My cardiologist started me on Fludrocortisone (50 micrograms slowly increasing to 300 micrograms). I did feel a benefit but it came on slowly over the first couple of months. My BP went up slightly but my tachycardia wasn't as fast. Before the Fludrocortisone I was having a lot of fainting episodes (several times a day) without any warning. when the Fludrocortisone got working I changed to having lots of dizzy episodes but almost always with enough warning so that I could sit down and prevent a faint. It made a big difference to my quality of life. I didn't notice any problems with my immune system and didn't get more colds than normal or anything like that. Hope that helps, Flop

Nina, I agree with you - you need to have respect for each other and share information. When I was thinking about getting my wheelchair my cardio went mad with me. He truly believes that using a wheelchair will incapacitate me as I will lose the ability to stand up. I told him what I was considering and why (to enable me to stay at work - I managed 18 months longer in full time employment with the help of the wheelchair). He was rather shocked when I said "thank you for your advice and opinion, I am going to make an informed descision not to follow your advice. I am not looking for you to agree with me, we shall have to agree to disagree on this issue". He was taken aback but I went ahead and got the chair and I didn't get any worse. He still disagrees with the chair and has "banned" me from using it but at least we were able to talk about it. flop

Yes, the link between computers and melatonin is to do with light. Before we had electricity people gradually had lower light levels in their homes in the evenings. The reduction in light intensity is a signal for the brain to release melatonin in preparation for sleep. Electric lights artificially increase our "daytime" hours and mute the natural signals. Computers are even more of a problem as the screens are brightly lit and you look directly at the screen whilst reading. The light from the monitor inhibits melatonin release. Some people advise that you shouldn't use a computer after 8pm. I obviously don't follow that advice as I am often on here until the early hours of the morning (not always helpful being in a very different time zone). What I do though is turn down the brightness of my notebook screen to 25% of maximum (makes the page look grey) and light the room with a table lamp rather than the main lightbulb. Another important factor for helping natural melatonin production is to sleep in a room that is pitch black. Blackout curtains and no night-lights will help your body understand that it is "night time". Keeping to a regular bedtime also helps. I've never taken melatonin supplements myself but my Dad has used them to combat jet-lag when flying on business trips all over the world. I am usually so tired that I can sleep ok without taking anything. Flop

Hugs Morgan! Glad to know you are back home. Sounds like you have a fantastic PCP. Heal well, Flop

Hi Carinara, first of all hugs for attempting to go through with the court case - it is a scary thing for a healthy person to do. Does the judge and the lawyers (for whichever side you are being a witness) know about your health problems? Under disability laws they should be able to have you get into court without climbing lots of stairs or having to stand up. Perhaps borrowing / using a wheelchair would be a good idea so that you don't feel pressured into standing up. In the UK witnesses are sometimes allowed to give evidence via a video-link. It is most often used for children giving evidence. If that was possible you could be in another building with air-conditioning and somewhere to lie down when you are not speaking. The legal team that you are giving evidence for should be able to help you get some sort of special arrangement - it is in their interest that you are able to talk to the court and come across clearly as a reliable witness. Even if they just sort out a comfy chair, footstool, fan and cold water it would help you. Good luck, Flop

Hmm, difficult question to answer. Personally I felt so "blergh" that the idea of physical exertion rather than sleep was a no-no. My long-term relationship fell appart because of my illness and trying to work a long-distance relationship due to my partner being at university. I went through a long phase of lack of libido which I was partially blaming on my SSRI but I think was more likely to be due to the fact that I was exhausted and depressed. Last few months libido has improved (still on SSRI). Current hurdle is trying to get out in the world to find a partner. Flop

My thoughts are with you and your boyfriend. I hope that he makes a speedy recovery from the surgery and that they got all the cancer. I also pray for strength for you to be able to comfort and support him as he recovers. Time to enjoy some hugs together when he gets home! Flop

Jana - ouch, that sounds painful and I can imagine why fidgetting whilst seated is not something you do! Standing up regularly should have the same benefit as fidgetting so probably a better option for you. Flop

futurehope - I have both POTS and syncope (NCS). Low urinary sodium shows that your kidneys are actively reabsorbing as much salt as possible from your urine, this is because by retaining sodium you also retain water. So yes Mayo are right that low urine sodium in your case is probably due to dehydration. The caveat is that without enough salt you can't correct the dehydration. It is important to get the fluid and salt balance right for your body. Everyone is different and will need different amounts of fluid and salt. Getting your kidney function checked every 6 months is a good idea (you need urea and creatinine mesuring). The way that my cardiologist uses the information from Prof Hainsworth's study is to check if I am taking too little or too much salt. We try to keep my urine sodium at 180-220mmol/24hours. Salt shouldn't cause kidney stones as they are usually made up of calcium oxylate (80% of kidney stones) or uric acid (10% of stones). To maintain optimal kidney function you need to get the water and salt balance in your body right so that you have good blood flow to the kidneys without excessive work from massive salt ingestion. This is where the 24 hr urine test is so helpful. If you are passing more than 220mmol/24hr of sodium you should probably cut back your salt intake. Flop

Thanks, I had previously wondered about a constrictive form as meds like Midodrine made no difference to my symptoms. I also have horrible allergies and have previously tried to get my doctors to test me for mast cell activation disorder. My immunologist doesn't believe in MCAD and says that my serum tryptase (random sample) is normal so not a mast cell issue. My total IgE is only 15 so doesn't make sense that I would be "so allergic". I am undergoing injection desensitisation to house dust mite at the moment and will have desensitisation to grass pollen over the winter. For allergies I am currently taking: Fexofenadine 360mg twice daily (six times the usual prescribed dose) Ranitidine 150mg twice daily Montelukast 10mg daily Flixonase spray Cromoglycate eye drops Last week my immunologist gave me Prednisolone 20mg daily for a week (BP had already changed before pred). My Dad told me a few days ago that during one of my POTS "episodes" that I had flushed bright red and stayed flushed for a couple of hours. BP just now 152/98 hr 82 sitting cross-legged on my bed. Looking back to Feb/March time the reading would have been 110/65 so quite a big change for me. I just wish I knew / understood what was going on in my body and the mechanism for my symptoms. I will be seing my local cardiologist soon but I have no idea what to ask him to do / try next (from all my reading I think I know a lot more about POTS than he does!). Flop

A few hours ago I did a whole load of BP and HR measurements. I did sitting and lying measurements then stood up and kept checking my BP for 35 mins. I was amazed that I managed to stand for so long and didn't feel too dizzy. By 25 mins I was feeling very hot (moved fan so it was blowing directly on me) and I went pink / mildly flushed. By the end my feet and legs were slightly discoloured purple (not obvious) and my capillary refil time on my shins was delayed to 5-8 seconds. I did keep sipping water when I wanted it during the time I was standing up. I didn't walk about, just stood near my bed (and listened to an audio book). I've tried to copy the data I collected from an excel spreadsheet. I hope that the formatting doesn't get all messed up when I submit my post. It should be in columns for position, time (0 for immediately on standing, then number of minutes after standing up), Systolic BP, Diastolic BP and last but not least heart rate. Position Time Sys Dias HR Sitting rest 136 96 88 Lying 0 137 83 84 Lying 5 131 82 75 Standing 0 127 89 113 Standing 1 130 94 112 Standing 2 error Standing 2 error Standing 3 135 92 100 Standing 4 130 96 103 Standing 5 131 95 101 Standing 7 131 102 107 Standing 10 118 93 105 Standing 15 134 105 112 Standing 20 138 108 116 Standing 25 141 99 105 Standing 30 error Standing 30 133 96 114 Standing 35 136 101 113 Sitting 0 144 98 98 Lying 0 error Lying 1 137 87 83 Lying 5 133 91 85 If anyone has any thoughts on what might be going on or has similar numbers please share. Flop

I hope you can get a better fitting neck brace. If it is making a big improvement in symptoms it might let you delay surgery for a while. My sister was in a serious car accident when she was 5 years old and broke several cervical vertebrae (C2, C3, C4, C5). She was very lucky that she didn't sustain a cord injury (especially as she was lifted out of the car and given a piggyback ride whilst waiting for the ambulance). She had a neck brace made especially for her. A technician came from a specialist orthopaedic hospital and made a plaster cast of her neck. He came back 2 days later with a solid flesh-coloured brace that went from under her chin to 1/3 way down her chest. She had to wear it for a year but looking back at photos now you often can't see the brace at all (I know from the angle of her head that she was wearing it as she was in a slightly odd position - looking downwards). Hopefully you can get a more comfy ready made brace but you could always ask about a made-to-measure one. Flop

Thanks for posting the update Ernie, it is good to know that the hospital were prepared to deal with a paralysis episode. Morgan - I hope you are recovering well and are as comfortable as possible. Get better soon! (Well back to baseline - you know what I mean!). Flop

I hope you can have a good discussion with Dr Heffez so that you can understand the different options and decide what is right for you to do. Has the hard collar helped at all? Flop

Darcy - might be worth trying to put a cushion / rolled towel under your elbows so that the slope "uphill" for the blood is more gentle, it would also stop your wrists being flexed so much which may be contributing to the sleepy hands. I sleep on my side but naturally my wrists and fingers flex and I wake up with numb fingers. I have been told that for me it is the wrist position causing median nerve compression (carpal tunnel syndrome). I have been given wrist splints to wear at night which solve the problem but are hot and uncomfortable to wear. Supporting my wrists with cushions seems to solve the problem. Flop

Sounds your rear isn't getting enough blood flow to it whilst you are sitting down. It is quite common in people who sit very still. I get the same problem if I am a passenger in a car and have a lot of luggage packed round me. The first thing that may help is to try to fidget and wriggle about regularly whilst you are sitting. My autonomic nurse commented that I am a very fidgety person and said it was a good habit to have if you have POTS. Move your weight from one side to the other or change position regularly. Rather than sitting for a long period try to get up and walk round the room a few times every hour to get the blood flow moving again. Another thing that would help is a special pressure relieving cushion to sit on. The basic ones are made from special weight distributing foam, more fancy ones are air filled and the top-of-the range ones have alternating air pressure cells. Does your PCP have a nurse that you can speak to? - often nurses are much better informed about skin care and preventing pressure areas and pressure sores than doctors. Flop