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I think there might be something in toothpaste that helps insect bites. I remember my Guide leader putting toothpaste on her bites at camp one summer (we were all laughing at her). She said only the toothpaste with red stripes worked - no idea if is was actually the colour, I suspect some brands had a certain chemical in them. Flop

I can't make any sense of it (too brain fogged to try to analyse at the moment). I hvae these sort of scales too. I notice that my daily weight fluctuations (which I know must be water based) show up as changes in body fat percentage (only by 2% though) as well as changes in water. I have noticed that no mater how much I drink and even when I was on Fludrocortisone I can never get my body water % above 42-45% the scalse say normal is 55-60% for a female. Flop

Hi thankful, losing your nursing licence must be a horrible feeling but at least there is a way for you to get it back if you improve. You are right it should help in your SSDI case - if the board of nursing deems you too ill to be allowed to practice I guess they will have to pay attention. Essentially they are saying that even if you wanted to work at the moment they wouldn't let you because of your health problems. Good luck with the SSDI. Flop

When I first joined DINET I got to know a few people through PMs and we swapped MSN loggins so that we could chat on MSN messenger. The profile page can be set to show your e-mail address and various chat loggins if you want others to be able to see your details. Flop

Hugs Rene, sounds like you have far too much on your plate right now Try writing the issues down on separate bits of paper, when you are thinking about one of them you are not allowed to think about things written on the other papers. This makes you only work on one issue at a time, trying to deal with them all at once would be enough to make anyone cry. Can you plan a special celebration with your daughter for just the two of you to share? A girlie film and popcorn in front of the TV might be an idea? Hugs, Flop

Sorry the cream isn't helping. An ice pack sometimes gives a bit of relief or running cold water over your arm. Flop

I've recently met a new friend through a different website (not a health website). By chance we discovered that we are both the same age and both off work sick. Even though we have totally different illnesses and different difficulties we have got along really well. We met up for the first time 2 weeks back then I went to visit her last week (3 hours drive away). It is funny how there are just some people that you can feel really comfortable with and can share things with even though you have only recently become friends. My friend is ill and in hospital at the moment so I call and send text messages, I know that she would do the same if it was me in hospital. Flop

Wow, you guys seem to get a lot more scans in the US than we do over here in the UK. Investigations I've had for POTS are: ECG x lots! 24 hour Holter ECG x 6 Chest X-ray x1 24 hour BP x1 Tilt test x3 Peripheral nerve testing x1 Investigations for arrhythmia (before I got POTS) Exercise test x1 EP study Reveal device x2 Flop

Either anti-histamine cream or a steroid cream would help and might mean you don't need so many benadryl. Flop

Oh - I meant to say that the one big advantage of midodrine with regards to side effects is that it has a very short half-life. So if you did get side-effects they should wear off very quickly (less than a day). Flop

I took midodrine for about 6 months a while back. I was on 2.5mg three times a day. I didn't feel much benefit from it but I didn't get any side-effects either. I think that the 2.5mg dose was too small for me, I've heard that others take much higher doses to get the benefits. Flop

In the UK these full body check-up CT scans have been banned because the dose of radiation from the scan is too high. They said that the risk of cancer from the CT scan was too high for healthy people to be exposed to. They say that you should only have CT scans when there is a medical reason to do a scan and that only the relevant bit of the body should be scanned. I don't know if anywhere does full body MRI scans for screening? MRI uses magnets rather than radiation so is much safter. But MRI scans are more expensive and take much longer so I guess it might not be cost-effective. Flop

I know one person in my town with POTS - my doctor had told me that he had another patient with the same diagnosis so I searched internet groups till I found her and sent an e-mail. Have you joined the DINET meet others program? Flop

I have something called a "latent squint" it means that most of the time my eyes are in perfect alignment but when I am not focusing they slide out of alignment and cause double vision. An ophthalmologist tested me using a "cover-uncover test" when I was in my teens. It showed up the squint and the doctor explained that it was due to a slightly tight eye muscle, when I focus the other muscles pull the eye into line so he said I didn't need any treatment for it. Usually it doesn't cause any problems but when I am either tired or feeling very POTSy then I get double vision . The movement of my eye is only by a millimeter or two so normal people just looking at me can't tell that there is a problem. The cover-uncover test was really easy. The doctor got me to focus on something far away and then quickly covered over one eye at a time. Apparently when he covered the "normal" eye the other eye "jumped sideways" so that it was then looking at the object. Perhaps seeing an ophthalmologist would see if you have a similar issue? Flop

Computer screens apparently do produce enough light to inhibit melatonin relase. My Mum is always telling me not to use the computer in the evenings (no chance - it is the only time I am awake enough to read / post usually!). Eye strain and visual disturbances. Have you heard of Irlen Syndrome? It is a problem with perception of light that causes visual disturbances, difficulty concentrating, tiredness, attention problems. It is thought that it may be the cause of dyslexia, ADHD, CFS, Migrane etc in some people. This website is quite interesting reading. I have a friend with severe dyslexia (illiterate in his 30s) who is starting to learn to read with his pink tinted glasses (not really the ideal colour for a macho rugby player but they do seem to help him). Flop

I've only had collections done for 24 hour sodium (but have done the test many times). The collection bottle for the sodium doesn't need preservative or keeping in the fridge. I suspect that the other tests need a preservative in the bottle so have to be done on a separate bottle. That means you will actually have to collect on 2 different days. The bottles I have been given hold 2.5 litres, as BellaMia said many of us pee more than 2.5 litres so ask for 2 bottles for each collection. When the first is full just carry on collecting in the second bottle but make sure that the go back to the lab together. I usually write "1 of 2" and "2 of 2" on the lables and tie them together with a bit of string just to make sure! Flop

Doesn't sound like pooling to me. Have you done anything to trigger bruises like kneeling on the floor? Flop

No you can do the test at home. Having done one collection whilst at work having to take a rucksack with the pee bottle and a plastic jug to the loo was rather embarrassing. Easier to do the collection on a sunday and drop it off to the lab on the monday morning. A lot of places are bad at explaining how to do a 24 hour collection. Essentially you choose a start time say 10am. At 10am you go to the loo and empty your bladder into the loo and flush it away. From then onwards everytime you pee you need to collect all of it and pour it into the collection bottle (I usually buy a cheap plastic jug to make this easier). The next day at 10am (or whatever your chosen start time was) you do your last urine collection (even if you don't feel the need to pee). At that point the collection is completed and you can take it to the lab to be analysed. Flop

I just wanted to chime in on the dysautonomia vs mitochondrial disease diagnosis question. Dysautonomia conditions such as POTS (your TTT results show POTS) are diagnosed based on abnormal functioning of the autonomic nervous system (sympathetic and/or parasympathetic branches). However a diagnosis such as POTS only describes what is happening in your body, it doesn't give any information as to why it is happening or what the underlying problem is. It is quite obvious that there are lots of different causes for dysautonomia. Mitochondrial disease is one cause of dysautonomia. By treating the mitochondrial problem you are treating the reason for your dysautonomia and hopefully your symptoms will continue to improve. Your 2006 diagnosis wasn't wrong, you do have dysautonomia just that at that time you didn't know why you have dysautonomia. I hope that makes sense? Flop

Hi, I've had a bit of a google for Ephedra - it seems to be a herbal medicine similar to ephedrine so it acts as a stimulant much like amphetamines and ecstasy typically causing increased heart rate, increased blood pressure, increased body temperature and increased sweating. All of those effects increase the amount of calories that the body is using up so it was an "obvious" candidate for becoming a diet-pill. I've not found any evidence specifically suggesting that pulmonary hypertension is a side effect (as opposed to systemic hypertension which is a side-effect). It would seem to me that the drug is fairly short-lasting and that the side effects would wear off quite quickly when you stopped taking it. If you stopped taking the Ephedra in 2003 and had your echo in 2005 then I doubt that any effect from the ephedra would have waited more than 2 years before showing up. The bottom line is that your echo will probably be normal again if repeated now, but you are worried and a repeat echo would reassure you. I don't think that it is unreasonable for you to ask for a repeat echo now (4 years after your first echo). Do you see a cardiologist (many of us with POTS see cardios)? Perhaps you could ask for a cardio referral and then get the cardio to order an echo? Try not to worry too much, pulmonary hypertension is very rare and the symptoms you describe are very common for people with POTS so most likely are due to POTS. Flop

Hi Erika, I'm glad you managed to get the car a little cooler before having to go out. I am so glad that the UK temperature is much lower than florida but I still find it difficult to go out on hot days. I do things like my supermarket shopping late at night (we have a 24 hour Tesco near me) when it is both cooler and quieter, it is a pity that so many things have to be done at a time to suit other people rather than the sun! I find it is best to roll down the windows for the first minute or two that the car a/c is on (gets rid of the worst of the trapped hot air) then roll them back up again so that the air in the car goes through the a/c unit several times and cools down. Make sure the garage door is open though - you don't want to accidentally gas yourself from the exhaust pipe! If you are taking your daughter somewhere, is she old enough to be in charge of opening and closing the windows and getting the car cooled down? Flop

Hi, some people with POTS tolerate beta-blockers very well, some get no benefit and some feel worse on beta-blockers. There isn't a good way of predicting how any one person will feel on a beta-blocker, if you don't try you won't know. My cardiologist is in favour of using small doses of cardio-selective beta-blockers. He started me on 1.25mg of Bisoprolol and we gradually increased this to 2.5mg twice a day. Before starting Bisoprolol I was already taking florinef with water and salt to raise my BP. For me bisoprolol was a "magic pill" in that as soon as I started taking it I stopped fainting - I still had POTS symptoms but I wasn't falling on the floor any more. I had 12 months without any faints. I took the bisoprolol for almost 4 years but had to stop taking it because of worsening allergy problems. The usual advice re medication in POTS - only change one medication at once (that way you know if it is helping or making things worse) and start off on a small dose (many of us seem to be more sensitive than usual to medications, starting low and building up can minimise the side-effects). Flop

Hi Carinara, I think that a lot of us get symptoms such as feeling light-headed and brain-fogged from our brains not getting as much blood flow as they would like. However what we experience is quite different from a stroke. When we lie down our brain gets the blood that it needs (soem people describe fainting as the body's "failsafe" mechanism to get enough blood to our brains, when we have stood up for too long our bodies will let us know to sit/lie down or they "force" us to lie down!). There are 2 different types of stroke: haemorrhagic and embolic. In a haemorrhagic stroke a blood vessel ruptures and the person bleeds into the brain (people with aneurysms in their brains and people with high blood pressure are at higher risk of haemorrhagic stroke than average). In an embolic stroke a piece of atherosclerotic plaque (fatty build-up in the lining of the arteries) breaks off from the wall of a blood vessel and travels up the arteries to the brain where it blocks off the blood supply causing an infarction (people with high cholesterol, diabetes and high blood pressure are at higher risk of embolic stroke than average). The same health checks apply to us as to other people - to minimise your risk of stroke you should get your PCP to check that your cholesterol and blood sugar are kept in the normal range, eat a healthy diet and exercise (I realise that exercise is very difficult for many of us!). Flop

Could it be a heat rash? That tends to have little itchy bumps. One way to know if a rash is due to sun or heat is to see if the rash also appears on skin that was covered up such as under your t-shirt. A true "photo sensitive" rash will only be on the parts of skin that were exposed - face, neck, arms, feet if wearing sandals, and usually has a clear border that matches where your clothes were. Hope it clears up quickly! If it is heat rash a calming product such as calamine lotion can help to take the itch out. Flop

Hi Michelle, some kidney stones show up on Xrays. They do what is called a KUB (kidneys, ureters, bladder) - essentially lower abdomen and pelvis looking for bright white spots that may be a calcified kidney stone. Here is a picture of a KUB showing a kidney stone (white blob on the left side of the picture) Another type of x-ray that can be done is an IVU if they think that a stone is actually blocking off one ureter (ongoing severe pain and back-pressure on the kidney). The intra-venous urethrogram (IVU) is essentially a KUB x-ray then they give you an injection into a vein of something that when it is passed by the kidneys shows up as white on the x-ray. They then take a series of x-rays to see how the dye flows from the kidneys down into the bladder. This is a picture of a normal IVU x-ray. Flop