sj75

The guys at Bristol are good. Oxfords ok to.x

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 pots create seem to make my arrhythmias far more likely. I've found dietary and lifestyle changes have made a huge impact. Its interesting you say about the eds , what tests did you have to get a diagnosis? I'm currently being referred for autoimmune testing and eds/sjogrens are being looked for amongst others. I've no idea what to expect as yet and am just waiting for the referral to come through but think it may provided some interesting results. The citalopram has been amazing for me. As with you it wasn't a genuine anxiety as such but my body reacting to every little change and i was having huge adrenalin surges which were really unpleasant and causing me all manner of problems. The only thing i would suggest is that you start with a really small dose and go up from there as i was prescribed 20mg but found i could get the desired result from taking 5-10mg. Its lowered my bp spikes and my pulse is more stable to. Its interesting what you say about loud music, i used to love to be at the front of concerts etc but i find the base vibrations in my chest really uncomfortable now and elevate my heart and cause ectopics. Maybe ease into it gently, for the first time in years i went to a few festivals this year (didn't do the whole staying over thing) but even going for the day was really good for my mental wellbeing and giving me a sense of normality again. sj.x

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 say is what a breath of fresh air. He was fantastic at explaining things to me and has a lovely holistic approach and a caring manner. He is the first cardiololgist/EP ive come across who was willing to discuss the link between ablation and autonomic issues. He said it actually happens quite regularly and that there is a definite link. The good news is that more often then not the autonomic issues created by ablation will settle usually within 2 years although there may always be some underlying symptoms. He was saying that some of the medications such as beta blockers can do more harm then good as they prevent the body doing what it is designed to do i.e adapting to an imbalance and righting it. Anyway, the difficulties i find now are working out sometimes what symptoms are arrhythmia linked and which are autonomic ones especially as they are so intrinsically linked anyway, you have the added difficulty of suffering anxiety which again can demonstrate the same symptoms so i think sometimes its a process of elimination over time. The mechanisms of the actions in the body are really difficult to explain but a lot of your symptoms following ablation have a clear cause. I have headrushes occasionally due to pots but more commonly due ectopics triggering a fast run of beats. With me they are also fleeting, usually lasting only a few seconds. Im also the same with sitting and am known as being a complete fidget. I have wondered if with me this is a vagal nerve issue (which a lot of AFers seem to have). If i remember rightly the vagal nerve runs down behind the oesophagus/stomach and after a large meal people are more likely to suffer vagal mediated syncope due to pressure on the vagal nerve and i think for me sitting can stimulate (my overly sensitive vagal nerve) in a similar way. GI problems are extremely common in vagal/sympathetic mediated arrhythmias (including AF) and dietary change are vital (caffeine, spicy foods, alcohol, food volume etc).Many say that their arrhythmias are triggered by eating too much or eating the wrong thing and that af can also trigger gut issues. Many also seem to use supplements to help particularly magnesium which i believe has been demonstrated as reducing the frequency and severity of arrhythmias. Its well documented that following ablation the natural heart rate remains higher, this is often why beta blockers and other medications are continued for sometime afterwards. For many if the ablation hasnt been successful this is a problem as arrhythmias are more likely to reoccur with faster beats and occasionally cardioversion is used for those in continual svt. I dont know about the earworm but the tinnitus can be stress related? and buzzing in the ears can occur due to blood pressure surges. I know a few people who have suffered ear issues (ringing) after ablations and have speculated why but without any real answers. As far as im aware its settled down for them. The peeing could be down to anxiety but if the heart is under stress (eg when in arrhythmia) the clever body releases a hormone (whose name escapes me atm) to take the pressure off the heart by ditching fluid. Its one of those really annoying things when your hearts pounding and your feeling dizzy and lightheaded that you constantly need to make bathroom breaks! the peeing causes low potassium and i could be wrong but i think magnesium as well?? (both of which ironically cause arrhythmias). I think your symptoms may have been heightened by the degree of deconditioning your body has gone through but the increasing exercise you are doing should help in that aspect. Are you on anything for the anxiety symptoms?? i have found the citalopram i take has helped immensely with my anxiety and adrenaline levels and this in itself has helped my work out which symptoms are attributed to what. It has taken me a while but given me much better awareness of my body and what it reacts to and doesnt. Hope some of that rambling makes sense-lol. Its such a complicated link (pots/arrhythmia) with various things overlapping. Key for me is finding a specialist who can treat BOTH conditions as it really is a balancing act. For example, bisoprolol (beta blocker) given for af will be dished straight out at 10mg but for pots sufferers 10mg is excessive and starting at 1.25mg gradually increasing until effective is the way to go. I was really impressed by the bristol guys on this front and will consider seeking a consult from them if things flare up again for me.x

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?

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

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

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 me sooner then planned. Anyway they wrote back saying they dont think its a pots thing and so wont see me earlier then planned and that i need referring to respiratory people to see wether the results are genuine?? ( i was a bit upset at what they were suggesting but gp reassures me that they probably meant wether there was equiptment error or issues with circulation to my fingers) The gp asked wether in knew if there was a link to low o2 sats and pots. I dont know of a definite link but common sense wouild tell me there is? Anyone else experience this or know if there is a link?

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

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

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 unsuccessful and triggered my pots symptoms. For that reason i have been advised that i should only consider one in the future as a very last resort.x

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

http://en.m.wikipedia.org/wiki/Albumin Not sure how useful this is? I just google low albumin and it came up.x

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

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

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

i know this topic has been raised before but i thought i would update on an extremely interesting conversation i had at a medical conference The Dr is the lead cardiologist at a heart centre in the Uk and sought me out at lunchtime after i had mentioned in a question/answer session that i had autonomic issues following ablation. This Dr has over 30 years experience of rhythm disorders and said that there was a definite link between ablations and ans problems (something my own ep has always refused to commit on) and he has seen it many times. He said that for a lot of patients it settles down over a few years but for a few the problems persist. He had very clear views on the use of medications in such circumstances and the importance of challenging the ans in order to help recovery. His colleague did a different talk specifically about pots and im so pleased to have finally come across specialists who would be able to look after both my conditions and prevent some of the contradictions ive come across. They said they would be willing to see me, the only downside is the distance (3-4 hours away as opposed to my current 45 minutes ) but im thinking it might be worth it.x

Thanks issie- will give it a try.x

Is there a link to this site ?? ( bet they don't deliver to the uk though:( )

I know very little about this vaccine tbh, but there is lots of documented evidence of vaccines causing autoimmune issues. I think we are over immunised and have to say my understanding is this is more of a problem in USA? For example, in the uk we don't generally vaccinate everyone against chicken pox because it's a childhood disease that is actually fairly harmless and good at developing our immune systems ( anyone in at risk categories or in contact with at risk groups get vaccinated) but for everyone else it's a normal childhood disease. I think the person saying about the issue being political is missing the point somewhat. My son was vaccinated for mmr ( I'm a nurse and didn't question the information pushed on us all) I also know there is no scientific link between mmr and autism but as a mother I know my son and know that before his second mmr he would make eye contact, would interact normally and was healthy. After, he wasn't - fact. I have done a lot of reading about effects of vaccines and there are lots of documented auto immune issues. I think the point is that we have to weigh up risks and benefits. For most the risks are low but why give uneccesary vaccines if they aren't needed?

I was told by my immunologist that I have fibromyalgia. When I saw my cardiologist he said that when you have something like pots that has a multitude of symptoms ( many similar to other conditions)it's easy to end up being told you have lots of other things as well when actually what you have is just all part of the pots. I have to say I'm inclined to agree, obviously not in all cases but for the most part.x

wow, thankyou so much guys. I was slightly concerned i wouldnt get any replies. Yuliya, being so close to Chernobyl must have been really difficult growing up. I never realised raditation was seen as therapeutic in the 50's, scary thought. It seems plausable that there is a link and i wonder how i can go about finding any documentation from the exposures in japan?

i have been given this (but yet to start it as i tend do any changes of meds exceptionally slowly)but was told it will help with my adrenergic hot flushes? as its often used in menopausal women for that purpose. im slightly anxious about taking it now.x

Has anyone heard of or does anyone know of a link between pots and radiation exposure?? anything could be helpful, theory or proven fact. My father was a christmas island veteran and was exposed (unprotected) with hundreds of others to atom bomb testing. This was a huge travesty and was the death sentence for so many of these young men and eventually my father. I have been approached by an organisation working on behalf of families of the veterans as they have seen an alarming number of children and grandchildren of the veterans suffering rare and unnusual medical conditions and they have asked me to find out more about wether there could be a link between my arrhythmias and pots?? ive no idea? anyone in the same boat or have any ideas if this is something that could be a possibility. Any thoughts welcome, no matter how far fetched-lol.x

I'm quite surprised there aren't others in this type of situation?

Thankyou so much for that. Your symptoms sound a lot like mine in that respect. They just don't know why my oxygen levels drop. How ridiculous to accuse you of holding your breath?? Ive lost count of the number of times I've been to hospital and been tested for blood clots on the lungs due to the low levels combined with chest pain. Once they rule it out they just ship me home?? Never really look into why the O2 drops.x