flop

Part of the issue may be due to the skeletal muscle pump. When we move our legs (esp hard work like climbing stairs) the leg muscles contract and relax repeatedly. This muscle action pushes blood up our leg veins towards the heart (increases venous return) (it is a bit like squeezing a tube of toothpaste!). When you stop walking / climbing the muscles aren't pumping any more so the blood in the veins doesn't get that help to flow up the legs. This means that blood flow back to the heart is reduced and it can bring on all the usual OI symptoms. For me I find that going from a quick walk to a stop is awful, I have to have that low-gear phase to allow my body to switch from active mode to resting mode. It is probably more complicated than just muscle pump action but that was how one of my doctors best explained it to me. In the same way, if I feel dizzy standing still (happens all the time!) I usually feel a bit better if I can walk arround. I end up standing in lines marching on the spot or rocking on my MBT trainers to get the muscles pumping. Flop

Thankful, yes I suppose I could train a dog myself for home situations but I would really like a dog that could do quite a few things for me and I don't think that I am well enough to take on the responsibility of training a dog from scratch. Also I would like to be able to go to public places alone more safely. I recently had a horrible experience where I collapsed on a train on the way home from a medical appointment. Despite wearing a medical-ID braclet and carrying a medical info card people thought that I was drunk and kept trying to push me upright into a seat. In that situation I think that having an assistance dog with me would make people realise that I was ill and needed an ambulance not to be locked up for being drunk (I hardly ever drink). Flop

Tessie, the bit about getting a sore throat at the same time reveals the cause of your ear pressure. The middle ear (behind the ear drum) contains 3 small bones, the lining of the middle ear makes small amounts of fluid. The fluid drains out of the middle ear down a narrow tube called the eustachian tube. The end of the tube drains out into the back of the throat near the tonsils. If the tonsils or other soft tissues in the throat get swollen (from allergy or infections) then they block the end of the eustachian tube. This stops the fluid draining properly and can cause fluid to build up in the middle ear. The eustachian tube also allows air in and out of the middle ear to equalise pressures. If the tube is blocked by swelling the air can't flow properly then you get a pressure sensation and feel like you need to "pop" your ears. You can help to equalise the pressure by swallowing hard (this is why the old advice to suck sweets when taking off and landing in an aircraft). If that doesn't work then you can use the method used by SCUBA divers - close your mouth, hold your nose and "breathe out" gently increasing the pressure, you should hear and feel a popping sensation. Flop

Coumadin (Warfarin) is prescribed to people in atrial fibrillation to prevent blood clots forming in the heart. It is usually prescribed along with a drug to either control the rate of the AF (usually digoxin) or a drug to try to keep the heart in sinus rhythm. Coumadin blocks the action of vitamin K and interupts the normal clotting mechanism of the blood so can be used to prevent and treat blood clots. Flop

Sorry - been googling again! I was reading up on alpha-adrenergic agonists and Wikipedia lists both Midodrine and Clonidine in that catergory (as well as oxymetalozine and pseudoephedrine). I noticed the clonidine and midodrine as they are both drugs used to treat POTS. Have you ever tried either of them? I wonder if you could get a 2-for-1 effect and improve both your problems with one med???? Flop

Tachy - I didn't mean to offend, I was just giving the info I have on usual causes of rhinitis (I have really bad rhinitis from allergies and also vasomotor rhinitis so I have loads of leaflets from ENT clinics). Your further posts certainly show that your problem is much worse that what most people get! The smaller mouthfuls bit was because I thought it was breathlessness making you unable to eat (I know I find it hard to eat when I can't breathe properly). Oxymetalozine - I use this intermittently, in the UK the label says take for up to 7 days then have a break. I used to take it alternate weeks. Most of my rhinitis is caused by allergy and now that I am taking a massive dose of anti-histamines (six times the usual prescription dose of fexofenadine, prescribed by an immunologist) I don't need the oxymetalozine. Nasal and GI links - hmmm, there is certainly something odd going on. Have you had workups from good GI and ENT doctors? Another thought, have you tried nasal steroid sprays? They are usually for allergies but steroids generally reduce inflammation so they may help even if your problems aren't from allergy. You do have to use them all the time for about a month before you know if they help or not. Yet another thought (I'm kind of thinking out loud here!) anti-histamine tablets - have they helped at all, again taking them daily for a while might be needed. I suspect you have already tried all these things but if not they might be worth considering. Hope you get some relief soon, Flop

Here's a link to a video made by a Dutch doctor who specialises in treating syncope (fainting). He uses a patient to show how different counter manoeuvres (muscle clenching, squatting) help to raise BP - you can actually see the patient's BP change on the beat-to-beat BP monitor! I am a member of a UK charity called STARS (Syncope Trust And Reflex Anoxic Seizures - The Blackout Charity) Link to STARS page on managing syncope - scroll down for video link Professor Wouter Wieling, Academic Medical Centre, University of Amsterdam and member of STARS Medical Advisory Committee highlights the importance of Counter Manoeuvres for patients with syncope. Flop Edited - the link doesn't seem to be working at the moment, I'll e-mail STARS and ask them to fix it.

Mainly blood pooling is actually within our blood vessels, some fluid will leak into the tissues but it is mostly dilated vessels. A lot of people who pool in their abdomens find that it is worse after eating (especially eating carbs). This is because food in the stomach causes blood flow to be diverted to the area to help with digestion. Drinking cold water after food can reduce this problem as the body doesn't want to cool the blood too much. I've got a link to a video showing how to use muscle clenching to help with symptoms of low BP - I'll post it in a new thread so that it can be found more easily. Flop

Usually florinef and salt tablets (or increased salt in your diet) are prescribed together - florinef works in the kidneys to increase re-absorption of sodium from the urine. As the sodium is pulled back into the blood water goes with it. The increased water in the blood raises your BP. In order to get the benefit of florinef you need to take enough water and salt. Flop

Grrr, it drives me mad when I hear about people being started on too high a dose of florinef. MORNINGS ONLY - for people with POTS / autonomic problems we only need to take florinef at breakfast time (best taken with food, not on an empty stomach). Unfortunately florinef is not licenced for POTS, its FDA approval is for Addison's disease so the prescribing information in most drug books is all about Addison's not POTS. In Addison's the adrenal glands don't make any steroids so twice daily dosing is needed. However in POTS we take florinef to boost BP not to replace hormones. Taking steroids of any sort cann cause insomnia, the best way to minimize problems is to take florinef in the mornings. STARTING DOSE - most POTS patients are started on 1/4 or 1/2 of a 0.1mg tablet (ie starting dose of 0.025mg = 25 micrograms to 0.05mg = 50 micrograms). When I was started on florinef I took 50 micrograms for 1 week (half a tablet), then I moved up to 100 micrograms ( 1 tablet) for 3 weeks, then carried on increasing (by half a tablet each time) every 2-3 weeks until I got up to 300 micrograms (3 tablets = 0.3mg). Seen as you got a headache on your starting dose you really do need to cut down on the dose. Your doctor suggested reducing to half a tablet twice daily. I would phone them up and ask about taking half a tablet once a day (I would tell them that you have read about starting doses on here). Hope you feel better soon! Flop

Yep, me too! I have days where consistently my HR elevates when I am upright, but other days it only goes up a couple of points. Sometimes when I feel my worst my HR is only about 100. Flop

A few things come to mind - allergic rhinits and vasomotor rhinits. Rhinitis is the medical term for inflammation of the nose and upper airways. With rhinitis the mucus membranes lining the nose become swollen and inflammed, extra blood flows to the linings and they secrete more mucus than normal. The most common form of allergic rhinitis is hayfever (allergy to grass pollens) but you can also have allergic rhinitis to many other things (house dust mite, cat, mould are other common allergens) and it can happen all year-round (perrenial rhinitis). Vasomotor rhinitis is not caused by allergy but by the body reacting to environmental stimuli - the most common is moving from cold to warm environment leading to sneezing and running nose. I have read somewhere that vasomotor rhinitis is known to be linked to autonomic dysfunction. I don't think that there is anyway that you could link rhinitis to the state of blood vessels elsewhere in your body. Many people have rhinitis without autonomic dysfunction, and many people with autonomic dysfunction don't have rhinitis. If your nose is stuffed up you can get breathless when eating. The secret is to take smaller mouthfulls and pause during chewing to breathe through your mouth (being careful not to inhale food and choke!). Many people with POTS have allergies and it is agreed that treating allergies is important in POTS. Some people notice that eating certain foods makes their rhinitis symptoms worse - milk / dairy are common culprits (not necessarily a dairy allergy but some unknown interplay). TREATMENT - as you have already noticed taking decongestants such as oxymetalozine and psudoephedrine can reduce the inflammation and stuffiness in the nose. Oxymetalozine should only ever be taken for a few days at once. This is because when used for more than a week, when you stop using it you get a "rebound" effect and the nasal inflammation and stuffiness actually gets worse. Pseudoephedrine taken orally for some people with POTS causes big problems with tachycardia. Others find that they benefit from vasoconstriction and feel much better. If taking pseudoephedrine it is a good idea to monitor your HR and BP and discuss any big changes with your doctor. Flop

Unfortunately Laura would need a referral to see either a cardiologist or a POTS specialist. Here in the UK all state healthcare is funded by the NHS but the budget is controlled by your GP. When you are referred to a specialist it comes out of the GP's budget, so NHS referrals can only be made by your GP. We do also have some private medical services but they usually want a GP referal too. The system here is very different to that in the US, it means that the patient can't just decide that they want to see a particular doctor. ECG - I have never come across this term being used to mean an echocardiogram. If Echo is given a 3 letter abbreviation it would be TTE (trans-thoracic echo) or TOE (trans-oesophageal echo) (but in the USA TOE = TEE = trans-esophageal echo). Confusing eh? Flop

Ramakentesh - I think that it would be more accurate to say: "Most patients who get ablation FOR POTS are WORSE afterwards rather than better" It really does depend on what part of the heart is to be ablated (leave the sinus node alone!!!) and why. The study that showed that ablations were bad for people with POTS was done when they were trying to use ablation to "cure" the sinus tachycardia that is part of POTS. If someone has a separate (non-POTS) rhythm problem that can be helped by ablation then they should still think carefully and see an EP who is experienced in POTS but should not automatically rule out an ablation. Flop

Hi Elena, were you on any medications when the blood tests were taken? Was your DHEA very low 1.743 or very high 1743?? I know that DHEA often goes low in people who are strugglin to make enough cortisol - the body sacrifices DHEA in order to make enough cortisol (they are both made from the same pre-hormone). I haven't had my levels tested by a doctor but I had salivary profiles done last year and had low cortisol but very low DHEA. Also don't be disheartened by the test resuts, you said that you are now feeling better than you were a few weeks ago and that is a positive sign. These sorts of hormones take a long time to change and often reflect stress that our bodies were under several months ago. It can take a long time for hormone levels to go back to normal even once someone feels well again. Flop

Sophia - you made me giggle I meant that the dog can load and unload the clothes washing machine / tumble dryer. Here in the UK you can't just decide to train your own dog to be an assistance dog. There is one charity that will help you train yur own dog but they have very strict criteria and the dog must pass assesments by them before their trainers will work with you. Also in the UK it is illegal for a dog to be used to pull a wheelchair. I think that for some people with POTS an assistance dog could be very helpful but for others the increased work of taking care of a dog and exercising them would outweigh the benefits. My main reason for wanting a trained dog is so that I could live alone and have the dog raise the alarm if I faint and can't get up. I have several times fallen down the stairs and dislocated joints so that when I have come round I still can't get up or call an ambulance. I hate having to rely on my sister to be there "just in case". Flop

I can't be sure but I think the information on the Wikipedia page is wrong. In the DINET documentary that has recently been released one of the doctors says that there are no FDA approved drugs for POTS but that doctors prescribe drugs that were FDA approved for other conditions. For example Florinef / Fludrocortisone is FDA approved for Addison's disease but is commonly prescribed "off-label" for POTS. They also said that there isn't even a medical condition code for POTS. (I think that I am remembering correctly but please do correct me if my memory has messed up). The problem is that obtaining FDA approval (or similar in other countries) is a lengthy and very expensive process. A pharmaceutical company will only spend that money if the new approval will bring them lots of new prescriptions (ie make them a large profit). As POTS is relatively rare they would never make enough money back to cover the expense of the FDA approval process. The pharmaceutical companies rely on doctors taking the risk of prescribing off-label. Flop

The types of things that a service dog can help with are quite varied. Mainly they can fetch / pick up items, pull and push (eg doors, getting dressed), get help (barking and operating special emergency phone buttons). I have actually recently e-mailed one of the UK charities that train and provide assistance dogs to disabled people in the UK to find out more. I will post some links to UK assistance dog websites as I think they may be interesting even to those living outside the UK. Dogs for the disabled Canine Partners Support Dogs Dog AID (Assistance In Disability) These are some of the tasks that a dog can be trained to do: # Calling an ambulance # Opening and closing doors # Picking up objects # Assisting with dressing and undressing. # Accompanying their owner whilst shopping, etc. # Acting as a physical support # Raising the alarm # Operating control buttons # Switching lights on and off # Carrying items # Loading and unloading the washing machine # Fetching the telephone and other items A Support Dog can be trained to do many other tasks which their owner may find difficult or impossible. Flop

Potsgirl - all the info about salt being bad for heart disease is in relation to salt causing high BP, high BP then increases risk of heart attack and stroke. If you have low BP (and don't have problems with your BP going high) then salt would probably be helpful for you. I don't know if salt would be an issue with your specific heart problems but I suggest discussing it with your cardiologist. Flop

ECG / EKG is also often confused with EEG! EEG = Electroencephalogram = wires stuck to your scalp to measure the electrical activity in the brain. If you know any Latin you can work out what a lot of the medical stuff actually means. Electro = relating to electricity Cardio = relating to the heart Gram = chart / graph Encephalo = relating to the brain Flop

ECG = Electrocardiogram (UK spelling) EKG = Electrocardiogram (US spelling) (I don't know why you guys spell "cardio" with a K??) Echo = Echocardiogram. An ECG / EKG is where they stick wires onto your chest, arms and legs to record the electrical activity in the heart. A standard 12 lead ECG is done with you lying down over a minute or so. A 24 hour ECG/EKG (Holter) is a version with just 2 or 3 leads and a portable recording box. An excercise ECG (stress test) is a 12 lead done while you walk on a traedmill / bedal an exercise bike. An Echo is where they put conductive gel on your chest and use a soundwave probe to look at 2 dimensional pictures of the heart or doppler to look at blood flow (you hear a whoosh-whoosh noise during this bit of the test). Basically the probe sends out a "sound" signal then listens to it bouncing back ("echo")of the different structures - it turns the data into pictures. It is just like the scans done during pregnancy. Flop

From my sudden disabling symptoms (viral infection in November 2004 lead to fainting repeatedly on a daily basis) to my TTT and diagnosis was only 7 weeks. I was very fortunate to already be under the care of a cardiologist who knew about POTS and had other patients with POTS. As soon as I started fainting he said "I think you have POTS, I'll organise a tilt test". However, looking back at holter tests done several years earlier (for episodes of unrelated palpitations) I did have a persistent sinus tachycardia 120/min when standing. At the time I complained of fatigue and intermittent breathlessness but the symptoms were dismissed. I had had a knee injury and surgery the previous year. The pain and sudden cessation of sports lead to depression. I was also studying very hard for major exams. My fatigue and general "bleurgh" feelings were attributed to "stress" and were not investigated. Knowing that I have EDS, I suspect that had a TTT been done several years earlier that I would have met the criteria for POTS. Flop (I answered less than 3 months)

Don't be embarrassed - if the reason for a test isn't explained you can't know what they are looking for. A 12 lead ECG records the electrical activity of the heart. It does show the speed of the heart but they are usually looking for two things on an ECG. A) the rhythm (pattern of waves) to make sure that the electrical pathway is correct and the "leads" which would show damage from a heart attack or thickening of the heart muscle. The test that best shows the fluctuations in heart rate is a holter monitor / 24 hour ECG. For this test they put just 2 or 3 sticky pads on you and you wear a small box (size of a mobile phone) on a cord round your neck or on your belt for 24 hours. While wearing this sort of monitor you should keep an activity diary (eg 2:14pm stood up to wash dishes) and also note any symptoms. When you next see your GP take along the home readings of your pulse and BP. Then ask the doctor to take your pulse whilst you sit and then stand up. I would specifically ask for a cardiology referral (in the UK you are entitled to a second opinion). Good luck, Flop

Sounds like you need to find a different dermatologist. If he had been able to say "this is totally normal but I can see you are worried about it" or something like that then maybe a discussion about anxiety / depression would be in order, but to just ignore the skin problem is totally unfair. Flop

Raynaud's typically affects the distal parts of the body furthest away from the heart (fingers, toes, ears, nose). It is more likely that the pains further up your arms are something different - a connective tissue problem as someone has already mentioned is a possibility. I would have your dr check you out, maybe a rheumatologist could shed some more light on the aches and pains. Physiotherapy may help. Skin scratches - I have had phases where my skin has been extra-sensitive and I have got scratched from rubbing with a bathtowel or rubbing against the sheets at night. Might be worth trying a greasy-moisturising lotion before going to bed. Flop