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Oooh - I think you might be onto something. I'm currently on antibiotics for a soft tissue infection and am having a few good days. I had thought that it might just be that now the infection is getting better that I don't feel ill from the fever but my POTS seems a bit less troublesome too. I saw my ENT surgeon last week. I go regularly because of frequent nosebleeds (EDS blamed for these), severe rhinitis and recurrent sinusitis. He suggested that I go on a low dose of Clarithromycin for 3 months to prevent sinus infections. He did say that the antibiotic has an anti-inflammatory action (but the pharmacist disagreed). Once I am off the acute antibiotics I will start the low-dose ones - fingers crossed that they may help more than just my nose! Flop

Happy Birthday! Sunfish I hope you have a lovely day Flop

Hi Alicia, I'm glad that you managed to get your Adobe downloaded - what a pain that it didn't suggest turning off add-ins. Good thing that it was a simple "fix" and that you didn't have to change your browser against your wishes. I also thought of another Firefox function that I use so much that I forget it is there - support for languages other than English. I am totally bilingual. I was born in England and grew up in a family that spoke only English at home, but from the age of 6 weeks we actually lived in Wales (one of the Countries that makes up the UK). I went to a Welsh school so did all of my education up to age 16 in Welsh (history essays written in Welsh, my French vocabulary book was Welsh-French!). I know microsoft does support a lot of the major languages but it doesn't have any features for use with Welsh. Firefox has really good spelling and grammar support for Welsh (which is helpful as I now live in England and hardly ever get to speak Welsh but do e-mail friends and post on facebook in Welsh). A bi-lingual Flop

I've not had any children but I have been advised by my gynaecologist that if/when I do have a baby that I should have a planned c-section due to various health problems. It is something that you could discuss with an obgyn even before getting pregnant - the decision will be based on a number of things including your health, the babies health and your preferances. I would advise that when you do decide to start a family that you have a pre-conception consultation with a good obgyn to start discussions on this sort of issue and also to make sure that your meds etc are the best combo for pregnancy. Flop

I have given one of the giant microbes to one doctor. My long-term cardiologist was given a good quality bottle of wine a few years ago after he had been particularly helpful. One fun gift I managed to find last year was a heart shaped squeezy stress-relieving toy. To be honest I don't do Christmas presents for doctors, I send a home-made card (quite simple ones done with stamps and embossing powder) with a "thank you" message inside. When I have given gifts it is usually to thank for a specific thing that the doc has put a lot of effort into or because the doctor is moving away. Flop

I always used NetscapeNavigator at university so when I got my own computer and had to use Internet Explorer I didn't get on well with it. I have been using firefox for about 6 years now and love it. One of the best bits for me is the tab function (came in firefox ages before IE). Right now my open tabs are: DINET, hotmail, facebook, amazon, and a friend's blog. I am forever flicking between different websites. Flop

Hi Laura, Welcome to the forum. Your symptoms certainly match those of a lot of the members on here. The biggest clue though has to be the BP & HR readings you posted. Your HR is certainly increasing by 30/min on several occasions from lying to standing. For a POTS diagnosis on TTT your HR only has to do the +30 for a short time, usually within the first 10 minutes of the upright stage. Your HR doesn't have to stay high for a diagnosis. I'm in the UK too. Flop

It's not snorring, it is purring - does Teri not realise that you are mimicking Wilbur? Flop

My younger sister got me to go ice skating with her earlier in the week. I managed 3x 20 mins on the ice which is much longer than I could usually stand or walk for. I think the cold helped to constrict my blood vessels. Everyone else was in layers of jumpers and coats - I was just comfortable in a lightweight top! Flop

Yes, I forgot to say that extra fluids are really important too. I'm glad that your doc could reassure you and I hope you start to feel better soon. Flop

My EDS was suspected by my POTS specialist (Prof Mathias, neurologist) so he referred me to an EDS expert (Prof Rodney Grahame, rheumatologist) to confirm the diagnosis. Good luck with working through all this stuff, sounds like you have a caring PCP who has known you for many years - a good PCP is really important. They don't have to know about POTS / dyasutonomia, just be willing to read and learn along with you and liase with any specialists that you may see for POTS testing. Buying a copy of the DINET documentary may well be useful for you to share with your PCP and sisters. Flop

I always feel much worse when I get any sort of infection. My cardiologist said that infections somehow cause the vessels to dilate and lower BP, then we compensate with more tachycardia than normal. I would let your doctor know what your current numbers are and how they compare with your usual numbers. Some people may need IV fluids in hospital if they are much worse due to infection. Flop

When I am having a bad POTS time my face will flush red and feels like it is burning, I also sweat profusely from my face and chest when this happens. Flop

That sounds like the diet pattern that I am supposed to be following (I'm not very disciplined when it comes to food!). I have seen a CHEK practitioner who assessed my Metabolic Type and determined that I am a protein type so should eat a high-protein, high-fat, low carb, no grains diet. I must admit when I did follow her advice I felt more alive than normal. I think that just eating good "clean" food and avoiding processed food and chemicals can make anyone feel healthier. I know that for me aspartame (an artificial sweetner) causes major problems and makes my brain-fog much worse. I stopped drinking squash with aspartame in for 2 months then went to stay with my parents. Their tap-water tastes terrible so I was putting blackcurrant squash in it to make it palatable. Within 3 days I had really bad brain-fog that improved when I stopped drinking the blackcurrant. I now drink bottled water or fresh orange juice at my parent's house. Flop

I don't have "heart burn" pain but I do have a lot of reflux. I frequently have stomach contents come back up into my mouth even hours after eating. The autonomic nervous system (the bit that is messed up in POTS / dysautomonia) controls everything that our bodies do automatically (I call it my autopilot function) this includes the gastro-intestinal tract. When my POTS is bad I also have worse problems with both reflux and diarrhoea. I would see your PCP and tell them that the GI tract is often messed up in POTS (the new DINET documentary film mentions this). Any new symptom should be investigated so your doctor may suggest an upper GI endoscopy or other test to make sure that it is just reflux and nothing else going on. Flop

Almost everyone has ectopic beats, if you did a holter on a random person you would probably find some ectopic beats. Most people are not aware of these extra beats, but some people are much more sensitive to them notice when they happen. In fact usually people don't feel the actual ectopic beat but the slightly heavier next beat - often described as a "thud in the chest". Usually ectopic beats are nothing to worry about and don't mean anything in terms of heart problems or dysautonomia. Like any new symptom or problem it should be checked out by a doctor but if further tests show no concerns then it is probably okay to just ignore them. Flop

I've previously had accupuncture from a physiotherapist for back pain and it was very effective. I am currently seeing a Traditional Chinese Medical practitioner - having accupuncture and taking herbs. I can't say that I have noticed a dramatic change in my POTS overall but certainly after the sessions I feel tired but fantastic. The day after accupuncture is the best day of the week for me, I seem to have much more energy. I must admit the practitioner I see thinks that I am a total nightmare case - I have so many problems that can't all be treated at once, he described my body as "in a state of chaos". Also, unlike pain, it is hard to tell if POTS is improving or not week by week to let him know which treatment patterns worked best. Flop

I'm sure that someone did post a while back about cardiac rehab (try a forum search). My physiotherapist is pulling her hair out trying to find some exercise that I can do without blacking out. She is a rheumatology specialist (for my EDS) and has a special class for rheum patients but they can't do any sort of cardiac or BP monitoring. People with fainting or unstable BP are automatically barred from the group. She came up with the idea that I could do cardiac rehab first so that I can be closely monitored. Unfortunately at my hospital the cardiac rehab is only funded for people who have had actual heart attacks - other cardiology patients are barred! I can't join a gym (no-where wants to take on the liability of having a member who faints frequently). My cardio suggested buying myself a treadmill (expensive!) but as I can hardly walk one block it would be pretty pointless - I might as well use the free pavement outside the house. Actually I do make an effort to walk every day, I try to go window shopping most days as a way of ensuring that I have walked and that I have got out of the house. Some people have found swimming very effective as you are horizontal and the water also supports your BP. Other options are recumbent bicycles or recumbent exercise bikes (I think MightyMouse has one of these?). Flop

If you have had a lot of time off sick then I guess that your boss knows that you have a major health problem. Do they know what your condition is and how it affects you? I would advise asking for an appointment to meet with your boss (the size and type of company you work for will have an effect on who you see - line manager, company boss, HR officer etc). If you know someone senior that would be supportive I would try talking to them first. Go and explain to them the problems that you are having and the solution that you have come up with (working from home). Most members on here will be protected by some sore of disability discrimination law. In the UK the DDA means that employers are obliged to make "reasonable accommodations" to help disabled employees do their job. when I was working I used this to be allowed to use a wheelchair at work (I didn't use it outside of work), have a fan in our coffee-break room so that I could cool down, and swap some of my duties so that I didn't have to work in part of the building that was much hotter than elsewhere. Most managers would be encouraged that you are taking the initiative and trying to find ways to work despite your health problems. Maybe working from home and tele-conferencing or just going in for meetings once a week would be an option. Some people have had their offices adapted with reclining chairs, ergonomic computer work stations and air-conditioning. Good luck, Flop

I am at the other end of the weight spectrum. Through my early twenties I was very athletic and had a BMI of 19 (with body fat of 11%). When I develped POTS aged 25 I suddenly became unable to stand up for more than 90 seconds so had to stop all active exercise. At that point my cardiologist even told me to stop exercising as being fit was lowering my BP!! I fairly rapidly lost a lot of muscle mass and dropped my BMI to 17. At this point I looked awful (and people believed that I was ill). I found that starting paroxetine aged 27 caused a big increase in my appetite and started off a weight gain. This was also badly affected by taking prednisolone for 2 years for severe asthma and allergies (which were making POTS control impossible). I am now aged 30 and off steroids but very overweight bordering on obese with a BMI of 29.5 (due to fat not muscle mass). People say that I don't look as heavy as I am but I think that because of my ballet training I know how to stand tall and use my abdominal muscles to pull my stomach in. Pre-POTS I was a UK dress size 10, I am now size 16 (US size 8 to 14). I saw my cardiologist last week and he told me that I must loose weight. I was complaining of being intolerant of heat and sweating a lot - he said that the only thing that had changed in recent years was my weight so that has been given the blame for my temperature issues. I think that the heat intolerance is part of POTS rather than weight-related but I want to loose the weight anyway. Despite the weight gain I still have a lot of GI issues. Bloating, cramping and diarrhoea doesn't necessarily mean malabsorption / malnutrition. Flop

Neck and shoulder muscle pain is a real issue for quite a few people with POTS, it can also go along with a headache. It is sometimes called "coat hanger pain". When the brain is complaining because of insufficient blood flow (as is often the case in POTS) the brain pinches / steals blood flow from other less important places. The neck and shoulder muscles are often targets to have their blood supply diverted to the brain because they are nearby and much less important. The reduced blood suppply causes the muscles to tighten up and leads to pain. Tightening of the neck muscles can pull on the scalp (just like a tension headache) and the scalp itself can have reduced blood supply - this would cause a headache. In my experience I very easily get "knots" in my neck and shoulder muscles. If I rub deeply on the muscles I can actually feel hard lumps in the muscles. When I turn my head I often get clicking / creaking / snapping sounds that can be quite alarming. I find that when my POTS is bad that my neck pain tends to appear / get worse. For me the best treatment / prevention is to have a regular massage. I used to have a weekly sports massage therapy session and during that time I was free of neck and shoulder problems. I haven't been able to see my sports therapist for a couple of months and I can really tell the difference now. I hope to get enough money together to have a massage soon (even better would be to find a boyfriend who could massage my neck!). The other thing that helps is applying heat. I have a microwave wheat-bag neck wrap that provides good relief. However be sure to lie down before trying out heat incase it drops your BP and makes you dizzy or even faint! Flop

I'll see if I can find the leaflet from the exhibition - at the moment I can't even remember the name of the company! Flop

Alicia, the numbers in a BP reading show the systolic (first number) and diastolic (second number) pressure readings. The systolic pressure is the reading of how much pressure in in the artery when the heart is contracting. The diastolic reading is the pressure in the artery when the heart is relaxing between beats. The heart contracts and relaxes over and over which sends blood along the arteries in waves. It is these waves of pressure that you can feel when you take your pulse. The drop in the systolic pressure shows that your body can't keep your BP up as much when you are upright. The rise in the diastolic pressure shows that the blood vessels have tightened up (constricted) when you stood up to try to help keep your BP up. If the vessels didn't constrict then your over all BP would be much lower when you stand. For a healthy person it is normal for the HR to speed up a few beats (maybe 10/min) and for the systolic BP to drop a couple of points and the diastolic BP to rise a couple of points. Usually these physiological changes are small and aren't noticed by the healthy person - it is a normal body adapting to change in posture and the effect of gravity. In people with dysautonomia our bodies can't adjust correctly and often our numbers change much more than the average healthy person. The numbers you quoted are on the high side, but the change is probably typical for one of us. Getting the balance between BP high enough for us to feel well but not so high that it becomes a risk for heart disease and stroke is a constant juggling game. I can understand why your PCP wants your BP a little lower. You need to find a happy medium where you feel good - monitoring your BP regularly whilst adjusting your salt and water intake should help you learn just how much your body needs (we are all different in our requirements for salt and water). Flop

From what I've read the test is only being offered by the lab associated with the clinic that have recently published research on XMRV and CFS. They are offering two different tests PCR to look for active infection and viral cultures to look for latent infection, they are very expensive tests $400 - $650 for both tests. I haven't seen any other labs offering this test and there doesn't seem to be an antibody test. This research is really in its early stages. There are both pros and cons to being tested so think carefully before spending your money. Flop

I've not heard of this specific test before, is it something that the doctor is doing research on? I did however recently attend a patient day at the heart rhythm congress in the UK. The day I attended was for STARS a UK charity that works with patients with all causes of blackouts (loss of consciousness). One of the stalls in the exhibition was demonstrating a new machine for measuring beat-to-beat bloodpressure with BP cuff on your finger. This is the sort of machine that Prof Mathias's team use when doing tilt tests. But this machine was more advanced as it also calculated systemic vascular resistance and cardiac output. The rep doing the demonstrations had never heard of POTS but when I explained that we get dizzy and tachy when we stand up he was keen to see what happened to me. He put the BP cuff on my finger and had me sit on the floor for a while then stand up. The results showed an amazing difference sitting cardiac output = 10 litres / min standing cardiac output = 4 litres / min!!!! Flop