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About sj75

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  1. The guys at Bristol are good. Oxfords ok to.x
  2. Hi Serbo, Im glad things are better then they were. I haven't seen prof. Mathias yet but am not ruling it out. Things have been manageable for a while now but if things start to flare up again i will see him. Im lucky as we also have private health insurance so it will mean a shorter wait and that i get to see him whilest things are bad. I would definitely avoid another ablation, my ep is in agreement and unless things with the arrhythmias get really unmanageable its not even something thats a consideration. When my pots is calmer my arrhythmias are calmer. The dramatic swings of my pulse the
  3. yes Serbo, we have- good to catch up with you and how things are going now. I only very occasionally lurk on the other site now as well, just got too frustrated with it and nobody there could really contribute on any of the pots stuff. I think last time you posted you hadnt seen prof. Mathias yet? i know he has a huge NHS wait, did you see him via the nhs? Sorry to hear things are still not good. A lot of your symptoms are very similar to mine after my ablation. I went to a conference recently and there i met Dr Pitts-Crick who is the senior consultant at the Bristol heart centre, all i can sa
  4. I can relate to this so much!! Some of your symptoms are not uncommon following ablation. Others sound more pot and vagal related. I'm on my phone ATM so can't type much but when I next get on my netbook I will try and elaborate. Which consultant/ centre are you under in the uk?
  5. thanks for the replies, its strange as sometimes when it happens i feel terrible, other times im fine? i agree pots mum , i did feel that my concerns were being dismissed and it annoyed me that the first reaction was that they are false readings- it seems to be the story of our lives. Whats the point of having all this technology if the minute they pick up anything out of the ordinary its dismissed as inaccurate? I do wonder if i get constriction of the peripheral veins when walking. Will be interesting to see what the chest people say.x
  6. i get these same symptoms with mine. I used to end up in a and e a lot and they would do all the tests and say that my heart was fine but to take it easy until it stopped. Sometimes they would temporarily increase my beta blockers as it reduces the adrenaline production. Its extremely unpleasant though, hope it eases soon.x
  7. This has been noticed a number of times in me since about 2006. I had to have an exercise stress test abandoned due to my o2 sats dropping to 80%. Also when ive been admitted to hospital it has been noted that after walking my oxygen levels drop. I was curious as to what my o2 levels were doing on the days when i feel really bad so invested in an o2 monitor that has a 72 hour memory and the software to analyse the data. The results have been a real eye opener and so i discussed them with my gp who felt they needed further investigating and wrote to my hospital (cardiology) to ask them to see m
  8. What is it with the p wave ? Is it absent? If so this I believe indicates AF ( irregular rhythm) rather then Svt ( regular rhythm. Calcium channel blockers are the second line of treatment and work really well for most people. I would be really interested to hear how things go. Let us know??xx
  9. 3.7 isn't significantly low, So I really would try not to worry but would ask the dr if you can repeat the blood test ( if he was worried I would think he would already have requested this) to see if it has changed. It's not at all unusual to have the odd abnormal result which is later retested and shown to be fine. Also, low albumin in itself is not a huge cause for concern unless you had lots of other new symptoms, it's just a marker but Drs would be looking at the bigger picture.xx
  10. the location of the ablation depends on the type of arrhythmia you have, eg if you have af, you have a lot of burning around the pulmonary vein whereas for for svt it can be on other 'hot spots' of the atrium, cryo ablation is favourable to radio frequency now but ablations can definitely affect the autonomic nervous system ( as was confirmed to me recently at a heart rhythm conference). Its also important to understand that in order for an ablation to be successful (currently meaning 5 years arrhythmia free) it may need to be repeated multiple times. I had an ablation in 06 which was unsucces
  11. I was going to suggest the Bristol heart centre as well. I went to a conference recently where they were speakers and they were very good.x
  12. http://en.m.wikipedia.org/wiki/Albumin Not sure how useful this is? I just google low albumin and it came up.x
  13. Wasn't there someone on here a while back with a four or six month old in hospital with autonomic issues? I could be wrong but I seem to remember them saying he had been born with it ?x
  14. If it's svt bb's are the usual drug of choice as treatment is aimed at slowing the pulse. There aren't really any other options for Svt. If it was an arrhythmia ( irregular pulse) then anti arrhythmics can be used. It depends how low your pulse gets? I have a reveal ( ilr) and was told the lower limit is set to only record a drop below 40 bpm as it can be normal for a drop this low especially at night in some people, in those cases you wouldn't want bb's I guess but they are often used with people with a normal resting pulse rate in the 60's/70's. X
  15. hi, I have arrhythmia (atrial tachy, a.f, ectopics atrial flutter) and pots so yes definitely possible to have the 2 but does complicate things especially as my ectopics and af can be triggered by a high heart rate (which i get with pots). Makes treatment very challenging at times as the drugs and doses can be contradictory but i went to a great conference lately which was a real eye opener and m,ade me realise that with the right specialist (one that understands the mechanism of both conditions) treatment can be tailored to work.xx
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