flop

People with POTS seem to have an excessive rise in HR on moving, even rolling over in bed puts my HR up about 20 beats. How much a healthy person's heart rate will rise on exercise (eg climbing stairs) will depend a lot on how fit they are. Very athletic people may not see a rise in HR at all. I guess most peope would see a 10 beat/min rise but if you were very unfit you would expect the body to struggle with the stairs and cause a much higher rise in HR. This si one of the things that make POTS difficult to compare with normal people, for some things our response is the same as for someone who was deconditioned. It is important to exercise within your capabilities to prevent deconditioning which would make POTS symptoms much worse. Flop

Yogini - interesting that you noticed the Paxil made your heat problems worse. My heat problems have been getting gradually worse for the last 3 years. And interestingly I sarted on paroxetine (seroxat) exactly 3 years ago!! My appointments with both Prof Mathias and my local cardiologist are usually every 6 months and only a few weeks apart. Today was my cardiology appointment. My consultant was not happy when I told him about my trip to London - he had been hoping for some guidance from the London team. He said he would write to Prof Mathias - I'll keep my fingers crossed that they come up with a plan. My cardiologist was stumped by the heat intolerance and my ongoing symptoms. The only thing that has changed over the last few years is that I have put on a lot of weight so that is getting the blame for my ongoing symptoms. Flop

The holter will only show your heart rate - it doesn't show your BP or how you are actually feeling. Even if the holter on meds doesn't show anything abnormal it doesn't mean that you are fixed. If your doctor has asked you to stay on your beta-blockers then I would do as he has asked and take them as normal. Often doctors do a repeat holter to check that your HR isn't going too low from the meds. The doctor will probably make decisions about your dose of beta-blockers based on the holter result so it is important that they know what dose you took. (If your HR goes too low they may reduce the dose or if it is still too high they may increase the dose or try a different medication). Don't worry, just go about your day as normal and see what the holter shows. Make sure that you do your normal daily activities, don't just rest all day. Also keep a journal of what you did at what time, and what symptoms you had at what time - this way the doctor can see what your HR was when you were feeling bad. Good luck, Flop

Thanks for the hugs Julie. You guessed it - I was alone (my Mum is a teacher so was at work, my Dad is working abroad, I had hoped that my sister would come with me but she refused). Next time I will have to pay for a care assistant to travel with me - I am not going through that again on my own. I suspect that it was the heat and the distress of the appointment combined that triggered the fainting (can you dehydrate from crying??). My next appointment with Prof Mathias is in June 2010. Flop

From what I've learned over the years, your echo findings sound as if they are only slightly abnormal. It may be that the valves aren't working quite right because of your blood pressure problems (ie POTS is the cause of the minor valve leaks) and that the valves aren't themselves causing your symptoms. Pregnancy related sickness can be awful. I have found out about several natural remedies that are safe to take during pregnancy - ginger (preferrably fresh root ginger), fennel, cardamom, cloves. The last three can be sucked or chewed as the dry herb/spice or you can get herbal teas with them in, or make your own tea. My personal favourite is fennel - I drink a fennel and liquorice herbal tea (the two balance each other in terms of effect on urine production - fennel is a diuretic but liquorice make you retain fluid). Hope you are feeling a bit more functional soon! Flop

One friend I have with POTS who wasn't getting any better with medication was actually advised to come off all her meds and get pregnant by her consultant. I wouldn't advise pregnancy as a treatment but if you are at a time in your life when you want kids there is no reason to rule out getting pregnant. The friend did really well during the first 2 trimesters, had a rough time during the third trimester, had a beautiful baby and is now expecting again. It is very much swings and roundabouts. I am 30 so quite a bit older than you. I would love to have kids one day and am starting to think that I had better hurry up and find myself a husband, but you have plenty of time to make the decision. Flop

Thanks guys for confirming that this is POTS / ANS related and not just me being mental. I went down to London the other week for my appointment with Prof Mathias but he was away and I saw a different doctor instead (another consultant???). The main symptoms that I had wanted to talk about were heat intolerance, flushing and sweating but the doctor pretty much said it was nothing to do with the ANS. He also told me that POTS was triggered during teenage years by a growth spurt and that I would grow out of it by age 24. HELLO??? I was 25 when I became ill and I am now 30 - go figure! I did get upset during the consultation which was a really bad thing as he then started talking about the psychological aspect and that I should have CBT counselling to learn to cope better with my illness. Basically I always get my hopes up when going down to London and this doc just shattered my hope right there in the consulting room. I did actually get referred for a "condition management program" through the program I have to do because of being unemployed and on benefits. The condition management turned out to be telephone based CBT. The nurse had me do a HADS (hospital anxiety and depression score) I scored only 1 point for depression and 0 for anxiety (the point was because I am tired). That proved that I am neither anxious nor depressed. In fact she advised that I consider helping out other people with chronic illness because I am so well adapted myself!!! The doctor also went through my meds list and told me to stop taking :paroxetine, antihistamines, H2 blockers, montelukast, asthma inhalers, epi-pen, paracetamol and codeine as they would make my POTS worse. The SSRI was actually prescribed for POTS, and without the allergy stuff my POTS is so bad I can hardly get out of bed. I can probably learn to live without the painkillers but I get so many blackout-EDS related injuries that I do take intermittent painkillers. To round off the disasterous trip I spent most of the 4 hour train journey back home lying on the floor of the train near the toilet (the only place without hot air blowing about) then collapsed when I went back to get my stuff from my seat. Some idiot hauled my to my feet right away so down I went again. Ended up being taken to hospital by paramedics. Had another blackout in the toilet in the hospital - whalloped my face on the sink! At some point that evening I dislocated my wrist (too dizzy to know when I did it). Have just escaped after 3 weeks in a plaster cast!!! Feel like it was a wasted trip to London. Now I will have to wait another 6 months to hopefully see Prof Mathias himself. Thanks for confirming that I am not mad, at least now I can carry on smiling! Flop

Hi, I was wondering if other people have the same heat intolerance issues that I have? Increasingly over the past few years I have been unable to cope with the heat or warm environments. In the UK our summers are no-where near as warm as most of the USA so most homes and shops don't have air conditioning. I found that any temp of 20c or more made me feel really dizzy, nauseous and breathless. I had to lie down with a fan or air con blowing cool air in my face. Now that we are in winter all the shops have turned their heating on and I am having the same problems again. At home there is no heating on in my bedroom and I am sleeping with a summer 4tog duvet and a cold fan on. Friends and family can't tolerate the cold in my room but I feel "just right". When I saw an autonomic specialist the other week I was told that this was not related to autonomic dysfunction (it felt like he was saying that it was in my head). But when I am too hot I will be pouring with sweat (especially on my face and chest) and often flush red. Do other people have similar heat issues? Any thing that helps this symptom (mess or tricks)? Flop

The active ingredient in liquorice and liquorice root is "glycyrrhizic acid" it has properties very similar to fludrocortisone - ie it increases sodium and water re-absorption in the kidneys which increases blood volume and blood pressure. A lot of commercial liquorice sweets (candy) are De-Glycyrrhizinated so would not be beneficial for us. this Wikipedia page on liquorice has some more info about the pharamceutical properties of liquorice. Flop (note Liquorice is the UK spelling for Licorice)

Hi Lisa, it is good to hear that the dogs got you sorted quickly with an ICD - V-fib is not a condition to ignore! From what Giraffe has posted it sounds like he/she has a much less serious problem of short pauses in the heartbeat. Some people have pacemakers for this but it doesn't need an ICD. Flop

When my fatigue really hits I can sleep pretty much non-stop for over 48 hours and still feel too tired to get out of bed. Flop

Some of my visits to Prof Mathias have been brilliant, others disappointing but usually because I have built up my hopes too much whilst waiting for the appointment. He certainly knows far more about POTS than any of the doctors I have seen closer to home and he was willing to listen to me and my ideas. Flop

Sorry to hear aboout your new diagnosis, but hopefully now that you know the cause of your gut trouble you can start to get it sorted out and start feeling better. Flop

It isn't a classic POTS finding, but many people who faint on the tilt table have a period of asystole, where the heart temporarily stops. The TTT can trigger a strong vasovagal response which slows or pauses the heart for a short period. The usual treatment for this in adults is a pacemaker which will prevent the heart from going too slowly or pausing. These vagal reactions can be dramatic but are not life-threatening, in fact many children with RAS (reflex anoxic seizures or reflex asystolic syncope) have lots of these episodes with no long-term adverse effects. Flop

I'm based in the UK so not sure how good my geography of the USA is. Dr. Svetlana Blitshteyn has been highly recommended, she practices in Williamsville, NY. Link to brain and spine centre. She is featured on the DINET documentary film and is leading a research project on POTS. Flop

It must be really frustrating to have the doctor make a plan with you then change it by letter. However it probably is a good idea to try one new med first rather than two at the same time (this way you know which med is helping or causing problems). Personally I have found Ivabradine (Procoralan) to be a very helpful medicine - it lowers my heart rate without dropping my BP. Flop

The UK POTS expert is Prof Christopher Mathias. He works at both St Mary's Hospital and the National Hospital for Neurology and Neurosurgery in Queen's Square. Here are his contact details for NHNN Prof Mathias. And here is some info about Prof Mathias and his clinical interests. Your GP can refer you to either of his clinics but he does have a waiting list as he sees patients from all over the UK (I make a 600 mile round trip to his clinic). Flop

Hi guys, thanks for the birthday wishes, I did enjoy a great day (even if I was at college in the morning). Nina and Persephone are spot on with the "Flop" explanations. It kind of started as the name of a soft toy bunny rabbit that I was bought many years ago - I borrowed his name to use as a screen name when I was at uni. However it now rather aptly fits my POTSy state so it has stuck. Flop

Hi Pat57, sounds like you are in a difficult situation. As you have both low BP and low HR with your syncope it is unlikely that any one treatment would work alone. Pacemakers sense the heart rate and will kick in to prevent the HR dropping below a set level (often 50 or 60 beats per minute). Unfortunately a pacemaker cannot prevent or treat low BP so syncope can still happen from the low BP alone. Often a combination of treatments are needed to treat syncope. It is really bad luck that you are having to switch off Norpace. Do you take any other medications or have you tried other meds previously? Perhaps a med to raise your BP would help? Flop

Most electrical equipment doesn't cause an bother with modern pacemakers. You shouldn't keep a cell phone in a jacket pocket on the same side as the pacemaker and should use it with the opposite ear. Magnets are the main thing to avoid putting near the pacer (no MRI scans) as they mess with the settings. Airport security will do a manual check rather than using a detector if you have a pacemaker card to show them. Flop

My sister did NaNo the year before last (she won't let me read her novel though) and will probably have a go again this year. Flop

I've been taking Paroxetine (Seroxat / Paxil) for several years now. It does help with the tachycardia and did seem to improve my POTS symptoms a bit too so I am reluctant to stop taking it. I accidentally went into acute withdrawal after a pharmacy error missed it out of my meds one week - I do not want to experience that again!!! I also have gained a lot of weight on Paroxetine. I have also gained about 45 pounds (now weigh 185 pounds and am 5'7" so definately overweight). I can't blame it all on the paroxetine as I don't eat correctly and get much less exercise than I used to but it certainly started suddenly with the Paroxetine. My Mum has mild depression and is taking 5HTP supplements (a serotonin precursor) with good effect (I don't know if they would work for POTS). Her supplements are prescribed, you can't just purchase them in the UK. Flop

I have an Omron 705 IT BP monitor. My Dad bought it for me many years ago from the electronics store at Schiphol airport and I'm sure that he didn't pay the current Amazon price for it (?150!!) (it is showing the same machine but 705 CP with printer for $73 on the amazon US site). It is an expensive machine but I think I can count on one hand the number of times that I have had error readings from it. It is a home use monitor but my GP has the same machine on his desk and uses it a lot so it does stand up to heavy usage. I must admit that I don't have the available printer and haven't only used the USB data transfe facility a couple of times so unless you really want those features then one of the cheaper Omron machines would do just as well. Flop

I've never heard of autoinflamatory as a medical term. As far as I know all inflamation is due to the immune system. Rheumatoid Arthritis (RA) is an example of an autoimmune condition - the immune system mistakenly identifies the synovial lining of the joints as "foreign" and attacks it causing inflamation, the inflamation is what causes the damage to the joint. There is so much that is still unknown about the human body. Autoimmune conditions are treated by rheumatologists not immunologists. Immunologists usually treat allergies and immune deficiency states (but not HIV/AIDS). Flop

Yep, Morgan has a pacemaker. Have you found out any more about the Norpace - as I posted in your other thread I think it is a supply problem due to the generic not being made but that the branded Norpace will be available as soon as they can make enough to get it onto pharmacy shelves. Flop