flop

Unfortunately in the UK we don't have the same choice of inhalers availabe. I''ve done a bit of research on the available bronchodilator medications in the UK. Albuterol is called Salbutamol in the UK (brand names include Ventolin). Maxair = Pirbuterol (not available in the UK) Xopenx = Levosalbutamol = Levoalbuterol (not available in the UK) The options available in the UK are: Short acting beta2 agonists Salbutamol (eg Ventolin) Terbutaline (eg Bricanyl) antimuscarinic bronchodilator Ipratropium (eg atrovent) (takes 30-60 mins to work) All three list tachycardia as a possible side-effect so it might be a case of trying to see which suits you best. The intal inhaler that I mentioned earlier doesn't actually work to open up the lungs but is used for prevention of exercise-induced asthma so probably not what you need. Flop

Thanks for the thoughts. I sincerely hope it isn't the menopause as I'm only 30 yrs old (family average age at menopause is 57). I was on a combined contraceptive when it was very high last summer, but I have been on it for years, was still taking it in the autumn when my BP went low again and am now off thr pill but having highs again. No sense or pattern as far as I can see! Flop Persephone - I'm still in hospital but can text and sometimes phone, also on MSN via my hotmail address. (For those that are wondering I have broken my wrist and had it pinned under GA on Friday, now having lots of syncope so not allowed home yet).

the sensation that you or the room is moving when you are actually still is called vertigo. The most common reaons to get vertigo are either as a side-effect of a medication or due to acute labarynthitis (inner ear inflammation) other causes include menier's disease. As this is new I would call your doctor - might not be anything to do with your NCS. Hope you feel better soon, Flop

I use a salbutamol inhaler without problems. if you are worried try just taking 1 puff instead of 2. Other options to discuss with your GP would be a cromoglycate inhaler (intal) very old-fashioned and better in kids, or consider a short course of steroid tablets (prednisolone) to get calm the inflammation in your lungs. If asthma is an ongoing problem you may do better to take a preventative steroid inhaler all year round tp prevent flare ups. Flop

US / UK Lingo: Hose / pantyhose = tights Stockings are either below-knee, or thigh-high. The thigh-high stockings can be either hold-ups (have silicone patches to help them stay in place) or need a suspender belt. Sizing: for stockings and hose/tights I would always advise getting properly measured for your first pair (my cardiologist sent me to a specialist vascular nurse for measurements, doppler ultrasound scan and fitting). Once you know your correct measurements you can then buy from a shop or online (ofter cheaper). For shapeware the best way is to buy from somewhere that will let you try them on and return or exchange if the size is wrong. In order to work the garment needs to be tight but you still need to be able to breathe and move whilst wearing it! Flop

Hi Persephone, if you mean my facebook picture then there is a reason that I look slim - it was taken before I got POTS when I was about 55kg! I have been struggling to find a recent picture where I don't have a double chin so just use that old photo. Flop

My cardio seems to be blaming all my current symptoms on my weight. I went from a perfectly healthy weight of 56kg (8st 11lb / 123 pounds) to my current 87kg (13st 10lb / 192 pounds). I basically gained 2 pounds a month steadily for 3 years from the time I started taking Paroxetine. In the autumn I had a huge push at dieting and managed to loose a bit of weight but I got a sinus infection at Christmas and my weight shot back up again. Flop

Hi TypewritterGirl, no I didn't get a satisfactory answer. When I saw my cardiologist he said that my high BP was because I am fat and that I needed to do lots of exercise to loose weight. I accept that I am fat (overweight not obese) but my weight has gradually crept up over the 3.5 years that I have been taking Paroxetine. For almost all of that time my BP was low, so I don't see that a sudden leap up in BP can be due to gradual weight gain. The cardiologist also had no answer for why I felt more ill with a high BP, he blamed that on the hot weather and being fat. In November I went for follow up with my autonomic specialist. Unfortunately he was away at a conference and I saw a different consultant neurologist. The appointment was a waste of time (he told me POTS was causedby a growth-spurt in my teens and I would grow out of it by age 23 - hmm, I was 24 when I became ill and I am now 30). Later in November I saw my cardiologist again but he said he needs the ans doc to tell him what to do. So now I am waiting for my next ANS appointment which isn't until June 2010. Oddly enough I had a patch of time in January when I felt much less symptomatic than usual. During this good patch my BP was systolic 105-120 and diastolic 70-85. Flop

Having any sort of infection (especially sinus or chest) always makes my POTS worse until the infection resolves. However I don't have any kids so can't comment on that. The usual advice for pregnant ladies especially towards the end of pregnancy is to consult your Obstetric doctor immediately about any rise in BP. Even though you have an appointment tomorrow I would give them a call today and explain how you are feeling. Always best to be cautious. Hope eveerything is fine and you are soon enjoying your new family member. Flop

when you measure your BP the arm cuff needs to be at the same level as your heart. If when lying on your side the cuff is on the arm above your body you will get a falsly low reading. Flop

Hi Summer, others have already answered about flushing being part of general POTS as well as it being part of MCAD. You specifically asked about beta-blockers and why they are a bad idea in people with MCAD. I think that in general beta-blockers and allergies don't mix well, my allergies were worse when I was on bisoprolol. MCAD is like an allergic response but without true allergy as the attacks happen without an allergic trigger. Severe MCAD and allergic reactions can both cause anaphylaxis (medical emergency). Anaphylaxis is treated by an injection of epinepherine (often an epi-pen or ana-pen). Taking beta-blockers means that the epinepherine injection can't work on all the pathways so might not treat the attack fully. There is no definate rule - each person shpuld have their risk worked out by an immunologist and their POTS physician to come up with an individual treatment plan. Flop

For some people with orthostatic hypotension the cause of their symptoms is hypovolaemia (low blood volume). This is especially common in older people who may be on diuretic medications (tablets to get rid of fluid like Lasix / Frusemide), or people who don't drink enough fluids or have the wrong balance of alcohol & caffeine to water. If hypovolaemia is the cause of low BP on standing then correcting the fluid balance with water, salt (and maybe fludrocortisone) will get rid of the symptoms. However most people on this board have one or other form of autonomic dysfunction (dysautonomia) which usually means that there is something more complex going on with our ANS, and that simple dehydration isn't the cause of our problems. Flop

As far as I know Midodrine raises blood pressure in general rather than specifically when standing. I would expect your BP to be higher when both sitting and standing. You should also be aware that some people get supine hypertension when taking midodrine (very high BP whilst lying down with midodrine in your system). Most people take their last dose of midodrine at least 4 hours before going to bed so that it is out of your system before lying down for the night. My cardiologist had me check my BP lying down and I didn't have a problem so I was prescribed a bedtime dose of midodrine (supposed to help prevent me fainting when going to the bathroom at night). Flop

Yes the DVD will play in Europe (it is in "all region" format). I'm in the UK and have had no problems watching the DVD. The link in the post above takes you to where on the main DINET site you can order a copy of the DVD. However please note that Alexia who mails the DVDs has just had her baby so there may be a bit of a delay. If you haven't yet found the main part of the DINET website it is well worth reading as there is a lot of useful information. Flop

Here is another picture I found on a website. Flop

EDS scars are typically called "papyraceous scar" "tissue paper scar" or "cigarette paper scar". My typical EDS scar is where I had my reveal device implanted. A "normal" scar for this procedure is 2-3cm long and fades to a fine white line (like it was drawn in pencil). When my wound was a week old it started to stretch and the doctors thought that it was infected (swabs were all negative). Apparently EDS scar tissue takes much longer than normal to develop any strength, so although the wound isn't open it is very fragile and any tension on the wound will cause it to become wide. They are often confused for "keloid scars" as the initial apperance can be similar. Keloids however are an overgrowth of scar tissue so there is a palpable lump in the scar. EDS scars are very thin in depth, like a bit of tissue rather than normal skin thickness. The general advice for people with EDS is to have any sutures left in for twice as long as normal, and also to help reduce tension on the scar as it forms by using steri-strips to give extra hold. I actually had my reveal device removed 2 days ago so I am currently trying to look after my wound. This is the third time that I have had a reveal procedure and they have cut through my old scar again. The doctor said she didn't use sutures in the skin but used wound glue instead. I said that would be fine and I would put on steri-strips afterwards. What the doctor actually did was put LOTS and LOTS of glue on - the wound is 3cm long but I have a patch of glue about 6 x 6cm. (Rather sore!). A google image search doesn't give many pictures but this picture shows multiple EDS scars. After having trouble finding pictures on the internet I now know why Prof Mathias wants a photo of my scar to use for teaching / publication. We took some photos at home just before my op this week, when I get the photos if there is a good one I'll try to post a link. Flop

Rigors are a "normal" reaction to a high temperature and can happen in anyone. Young children are particularly susceptible to "febrile convulsions" - a seizure due to high fever. Basically everyone has the potential to have seizures / convulsions but we have a seizure threshold that means most people don't actually have seizures. Many things such as acute illness and fever can lower your seizure threshold making it more likely that you would have a convulsion. This is probably all due to the stomach flu so I wouldn't worry about it too much. Take care and get plenty of rest and fluids. Hope you feel better soon, Flop

I can injure myself just turning over in bed (thankfully not often though!). I think my friends have got used to seeing me on crutches / in a splint, they had a harder time dealing with my wheelchair. When people ask I usually tell them what the injury is rather than how I got it - eg "I sprained my ankle" rather than saying that I was just walking and my ankle gave way on me. Kids can be so mean, often without realising. Plaster a big smile on your face and use those crutches, at least then you can get out to see people and not be stuck in bed. Hope your hip gets better soon, Flop

Over the last 2 weeks I have developed a new symptom. It only happens occasionally, usually at night when I am outdoors or driving. It can last from a few minutes to several hours. The easiest way I can describe it is like the function on the computer that puts a "tail" on the mouse icon. If I look at a light then turn my head there will be a fleeting trail of light like a streak. If I move my hand there is a trail of light that follows the image of my hand. I've never had this before. It is more puzzling than worrying, I can ignore the lights and it doesn't seem to interfear with my vision or ability to drive. My first thought is that Ivabradine can have visual side-effects so it might be my meds. The Ivabradine leaflet says "more than 1 in 10 people experience luminous visual phenomenon". However I have been on this med for over a year - why would I get a new side-effect after so much time?? Has anyone else had the same symptom? Has anyone had visual side-effects from Ivabradine (please try to describe what they were like)? Any ideas of anything else that could be causing this? I don't think it is enough of a problem to go and see my doctor but I would like to know what is causing it. Flop

Wow - healthcare is SO different for you guys in the USA compared with us in the UK. PAP / Smear - in the UK these are done every 3 years between ages 25 to 49, then every 5 years aged 50-64. Smears are only done more often in people who have had abnormal results in the past. We have a government run screening program that automatically knows when a woman needs her next smear and sends out a reminder letter. The results are then feed into the computer and it keeps track of any treatment or if you need more frequent tests. We would only see a gynaecologist if we had an abnormal smear or had symptoms of a gynae problem (like abnormal bleeding). A lot of women in the UK have probably never had a pelvic exam (well until they got pregnant!). Someone mentioned having a Ca 125 blood test to screen for cancers - some doctors do use these sort of tests for diagnosing but they aren't scientifically validated for this (a negative test doesn't guarantee no cancer, and a positive test doesn't mean you have cancer). The way these tests were designed was to use as a monitoring system for people who are known to have cancer - if the levels are going down then treatment is going well, a rise in levels would indicate that the cancer may be spreading or not responding to chemo. Flop

I didn't find this website until a couple of years after I was diagnosed. When my symptoms got worse (a flare up) I went googling for "postural orthostatic tachycardia syndrome" and found DINET. I learnt so much here. Flop

Prof Mathias at the National Hospital for Neurology and Neurosurgery, Queen's Square, London is good for getting a diagnosis. I went there for testing in January 2008. I was hoping that he would come up with a treatment plan for my local cardiologist to follow - unfortunately I have only tried one new med (Ivabradine) in the 2 years since I was tested. The follow-up is frustrating. Flop

GPS?? Flop

I know that 40% or less is (in the UK at least) considered to indicate "heart failure". I think that "normal" is about 50-60%. Mine showed an ejection fraction of 80% on one echo - my cardio just said that it showed that my heart was pumping very hard (but very efficiently) to try to keep my BP up. Now that my BP isn't so low my ejection fraction has come down to 65%. Flop

As you have got some sort of infection going on I wonder if your pain might be pleuritic (from the membranes covering the lungs rubbing against each other instead of gliding smoothly). Pleurisy can follow any infection of the respiratory system and causes pain on breathing. I have had it twice and it is horrible but does eventually settle down. Another thing that seems quite common is to get inflammation of the cartlidge between a rib and the breastbone. This causes pain on breathing but also if you press on the affected area. I think that you should call your doctor and get this latest symptom checked out. Hope you feel better soon, Flop