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Hi Jenny, sorry if my first post was confusing about the helpfulness of a tilt table test. I think that in your case you definately need one to see what is happening to your BP and HR when you stand, and to see if you can match your symptoms to any changes in BP or HR during the tilt. What I meant is that the TTT is being used less often by physicians in cases of "barndoor simple vasovagal syncope" (yes VVS / NCS and NMH are all used interchangably). If you went to a cardio and said "a couple of times a year when I am standing in hot crowded places I feel hot, sweaty, nauseous, dizzy, my vision and hearing fade and then I wake up on the floor" and you also said "inbetween times I feel fine and can do my normal work / school and sports". THEN the doctor would say that you had VVS but didn't need a TTT. The difference for most people posting on here is that we often feel unwell when standing up, or even all the time, or have phases where we frequently feel unwell. That suggests that there is something more complicated than just occasional VVS going on and that testing with TTT is needed. Hope that makes sense! Flop

Helen was much quicker at typing than me (well I was talking on the phone at the same time!). I'll second the advice on jogging bottoms / loose elasticated trousers and loose fitting tops. I found it was quite hot on the ward (in January) so wore T-shirts most of the time. There didn't seem to be a hospital shop so take plenty of books / magazines. I took my laptop with me and they let me plug it in so I could watch DVDs with headphones on. Flop

I've also been an inpatient at Queen's Square for autonomic testing under Prof Mathias. I had seen him as an outpatient at st Mary's where he discussed my previous testing and said it certainly sounded like POTS but he wanted to do his own more detailed tests rather than just accept my TTT from my local hospital. The waiting list to get in is long but it is worth waiting, Prof Mathias' test were far more detailed than the TTTs I had had previously. If you live a long way from London they usually arrange to either have you stay on a sort of hotel ward or get admitted onto one of the main wards so that you don't have to travel for testing. I had three main tests done down in the autonomic lab. The first was a detailed TTT which included hand on ice, hand squeezing, blowing down a tube (movements designed to look for abnormal autonomic function - mine were all normal responses). That TTT lasted about 45 mins upright and I had several blood samples taken during the test. You have an ECG trace connected, a special BP measuring device tight round your fingers and a video camera watching you so that they can closely monitor what happens. There is either a doctor or autonomic researcher with you the whole time and they are good at getting you to relax. Another day I went to the lab and had a short 10 min standing test (like a poor man's tilt). Then I had to lie flat on a couch whilst peddaling an exercise bicycle from easy to fairly hard for 10 mins. Then I rested flat for another 10 mins before repeating the 10 mins standing test. The other lab test was a "meal test". I had to fast from midnight (but allowed water). I had a 10 min TTT then they put the table flat and I had to drink a large milkshake through a straw (difficult to do lying down!). Then I rested flat for an hour before having the 10 min TTT repeated again. The other "standard" test that I had was the 24 hour BP monitor. they give you a list of things to do like lying, sitting then standing, or walking up stairs at a certain time. I also had a neurophysiology test and an appointment with Prof Rodney Grahame. Everyone was very nice but the food isn't that great! (Take some snacks with you!!). Flop

TTT probably isn't that helpful in diagnosing neurocardiogenic syncope / vasovagal syncope because of the false positives. However TTT is the gold standard test for diagnosing POTS. Ideally you need to see a doctor who understands POTS / autonomic problems and who knows what to look for on a TTT. Try looking on the dinet physician list (on the main DINET website) for a doctor near you. It is often worth travelling to see a good doctor and get a proper diagnosis, you might then be able to follow up with a more local doctor or PCP. Flop

Hugs Rene, I would be wary of someone who thinks that all POTS can be treated with the same medication combination. We already know that there are several different causes for POTS which would suggest that there need to be several different treatments. The other thing that makes me wary is that if one doctor had such a good "cure" for POTS then why hasn't he got lots of articles published in the medical journals about his protocol? Why isn't he a well known name in the POTS field such as Dr Grubb? Do you have a good PCP that you can go and talk this over with? Or can you see Dr Goodkin again soon to talk about the treatment options? Whatever you decide please don't suddenly stop any medications without talking to a doctor first. Flop

I usually avoid all sports drinks and soft drinks as most of them contain aspartame or similar artificial sweetners. After actively avoiding aspartame for several months my concentration seemed to improve. I then stayed with my parents for a few weeks and drank a lot of squash (their tap water tastes terrible). I suddenly realised that my concentration and memory had got a lot worse again so stopped the squash for good. If I want a flavoured drink I mix fruit juice with water or drink fruit or herbal teas. For my sodium (when I had low blood pressure) I would add a sprinkle of salt to each 0.5 litre bottle of water that I drank (natural rock salt is better than commercial table salt as it contains other minerals too). Flop

The normal range for respiratory rate in adults varies a lot depending on where you read it. 8/min was the lowest I found and 20/min the highest on a quick google search. On average I think about 10-14/min is normal. To slow your breathing try to count to 3 whilst breathing in and count to 6 whilst breathing out. Flop

This could be a number of things. It is normal for your HR to increase as you breathe in and decrease as you breathe out - this could confuse the machine. It is also normal to have some "ectopic" heart beats (also called PACs if from the top chambers of the heart, and PVCs or VEs if from the lower chambers). The most likely cause is one of the innocent causes above but it could also be a rhythm problem. Probably best to mention it to your PCP or cardiologist. A 24 hour Holter ECG would hopefully show the cause and reassure you. Flop

Darcy, if you have some hypermobility then it is worth getting evaluated for Ehlers-Danlos syndrome, not everyone displays all the signs. In the UK the diagnosis is made by rheumatologists but I think in the USA people usually see a geneticist for the diagnosis. It is probably worth getting checked out. Flop

Maxine, I have shoulder problems from sleeping on my side too. My shoulder is often scrunched up underneath me and most uncomfortable. I have quite broad shoulders so I actually put a thin normal pillow under the Ikea one to keep my spine in a straight line horizontally and reduce the squishing of my shoulder. Flop

1. 2-3 years 2. 2 (Paroxetine, Ivabradine) 3. When good 240 mins, currently zero 4. 21 grams Flop

There are many arguments between doctors on the definition of POTS. Dr Grubb's interpretation is that POTS is purely diagnosed on heart rate increase of 30/min or more. In my understanding BP in POTS can go up, go down or stay the same when upright and all those situations are POTS. NMH has already been defined by someone above. Often people are diagnosed with POTS and NMH. Erika your BP readings posted do fit with NMH and I wouldn't say that you don't have issues with BP, most people would feel pretty unwell with a BP of 82/64. when comparing lying and standing BPs and heart rates it is usual to lie down and relax/rest for a while. Take the lying down measurement first, then stand up and do the standing measurement. Flop

Earlier this year I had good sucess with eating high protein and vegetable diet, cut out grains and potatoes. My body seems to see bread or pasta and put on pounds instantly. Whilst I followed that eating plan I not only halted my relentless weight gain but managed to loose about 6 pounds too. Unfortunately I have had a lot of stress recently and have been pigging out on pizza and chocolate so not I am back to square one but I know how to go about it now without feeling hungry (I can't cope on a low calorie diet). Flop

Chrissy, I've posted in your asthma thread too. I would listen to what your cardiologist has advised. Too much Nadolol will lower your heart rate and make you feel tired. If you could possibly have asthma then the Nadolol could be making the asthma worse. Please don't suddenly stop your Nadolol without talking to a doctor as beta-blockers can have funny re-bound effects if stopped abruptly. Hope you feel better soon, Flop

I think that chronic bronchitis and asthma can be quite hard to tell apart. Did you feel any better after the nebulisers? If it is asthma then you should know that beta-blockers such as Nadolol can make the respiratory symptoms worse. Some people with asthma do okay on a different type of beta-blocker (cardio-selective beta-blocker). If your POTS specialist has advised lowering your Nadolol to help with the low heart rates it is something that you should consider doing, it may also help improve your respiratory symptoms. As heart failure has been mentioned (but is unlikely at your age and would usually show up on chest x-ray) you shouldn't suddenly stop the Nadolol unless a doctor tells you to. Does your cardiologist usually get back to you quickly? If so you can check with them about the Nadolol too but I wouldn't wait for days for their advice before doing anything. What does your PCP say about the heart rate and possible asthma? Flop

BellaMia - the reaction to iodine in CT contrast is usually a "proper" allergic reaction rather than an MCAD thing (but I could be wrong). Red itchy wheals on your skin after someone had written on it or scratched it is called "dermographism". Flop

I forgot to say that the same pre-hormone is used to make both cortisol and some of the female hormones like DHEA-S. When the adrenals are struggling to make cortisol they pinch all the resources from the female hormones and turn them into cortisol. Flop

MCAD = Mast Cell Activation Disorder. It is a condition that has the same symptoms as severe allergies (including anaphylaxis). In an allergic reaction the allergen is recognised by the bodies immune system as a threat and chemical signals cause mast cells to degranulate (burst) and release histamine. In Mastocytosis the body has far too many mast cells. In MCAD the number of mast cells is normal but they behave badly. The mast cells can suddenly degranulate without an allergic trigger. Flop

The other medical POTS is Pott's Disease which is Tuberculosis infection outside the lungs, usually of the spine. I was very confused when I first googled as I had got the spelling wrong! Flop

I have a purple wheelchair but I think it will be EarthMother's that you have read about recently. I was very lucky to get my chair paid for by "access to work" a UK government fund to help disabled people stay in work. Mine is an ultra-lightweight titanium chair made to measure for me and worth about $6000! Flop

Tilly is right. Usually the pituitary releases ACTH (Adrenocorticotropic hormone) which is the chemical signal for the adrenals to release the stress hormone cortisol. The Short Synacthen Test (SST) (Synacthen = synthetic ACTH) is used to detect Addison's disease (adrenal failure). In the SST they take a baseline Cortisol level (usually at 9am) and then give an IM injection of Synacthen which should stimulate the adrenal glands. They then take another blood cortisol level 30 or 60 minutes later (depending on the hospital's protocol). The cortisol level should be much higher on the second blood sample. If the cortisol doesn't rise enough it would suggest Addison's disease. Addison's disease is a very serious life-threatening condition that causes low blood pressure - it needs urgent treatment with replacement steroids. The Short Synacthen Test does NOT test for adrenal fatigue - it is not sensitive enough for that. Many doctors don't recognise adrenal fatigue as a medical problem. Adrenal fatigue is not life-threatening and doesn't usually progress to adrenal failure but it does leave you feeling exausted and unwell! (I have adrenal fatigue diagnosed on 4x salivary cortisol samples and have had a normal SST). Flop

My sister's boyfriend says I have POTS = Persistent Over-Toppling Syndrome Flop

Drinking water and lying down helps. The thought is that coat-hanger pain in OI is caused by abnormal blood distribution. If the brain is lacking blood it will attempt to get more blood by "stealing" blood from other areas nearby that are "less important". Things like the muscles of the neck and shoulders are the typical places that have their blood supply stolen - this leads to muscle pain, fatigue and stiffness. The usual helps to improve OI should help coathanger pain. The short term fix for me is simply to lie down. Flop

I tend to say "my auto-pilot has broken" Flop

I'm not sure if you have the same system in the USA but here in the UK if you buy from an online store using a credit card (rather than a debit card) you get automatic insurance via the credit company in case your item doesn't turn up or the company go bust. My sister recently had problems where several transactions appeared on her bank statement that weren't hers (purchases from adult stores!!!). Her bank have reimbursed her for the fraud and changed her debit card details. Flop