Womble

Still haven’t heard back from my cardiologist. Yesterday I was at a Psych appointment with my son and his Psych had just attended a conference on psychopharmacology, where one of the sessions was specifically about the effect of psychopharmacology drugs on cardiac issues and meds. Thankfully she had some insight and also, very kindly, looked Sertraline up in her books for me. The conclusion was that Sertraline is the best SSRI to take with cardiac meds as it doesn’t affect QT length and on it’s own doesn’t trigger arrhythmias. She suggested I halve the low dose the GP prescribed, give it a week and if ok move up to the prescribed dose, which is still very low. Not sure how much it will help because that’s still only a 5th of the dose my 17 year old son is on, although his is for OCD, so very different. I would still rather have spoken to or received a message from my own cardiologist about it but, as usual, that seems to be an impossible task. (When I was given a generic med that made me really sick last year, it took me 4 months, endless phonecalls and finally and an intervention by both Patient Liaison and my GP to get them to stop saying I needed to be seen by him as a ‘new patient’ because they failed to send my follow up appointment, so I hadn’t seen him recently enough. How could I be a ‘new patient’ when I have been seeing him for over 4 years and he prescribes my ivabradine every month - it’s farcical! In the end I had to see a different cardiologist who knew nothing about PoTS, because mine was on leave - which is apparently also where he is now!)

The GP I saw said Mirtazapine came up as an even more major contraindication than Sertraline. Weight gain wouldn’t be a good thing for me, as I have already gained 2 stone whilst nursing my son over the past three years. I’m not worried about the Sertraline myself, as my eldest son takes it for OCD so I am familiar with it’s usage and side effects, etc. I have had lots of ECGs, but know there are some anomalies and I have had one with a QT that was prolonged enough to be of concern for a while, hence me not just wanting to take an SSRI without first asking what my Cardiologist thinks. Unfortunately, he is on holiday until the end of the month. His secretary is going to try and find out if the Cardiologist I saw in November - last time my dr was away - might be willing to advise.

Mine started when I was 7 years old, but was undiagnosed until my mid-40s. (My teens were horrendous as I was accused of having an eating disorder, anxiety, you-name-it anything not to look any futher than a sickly, fainting teenage girl.) No-one has been able to think of a precipitating factor and I had always been a super-healthy, all day outdoors, up trees and wading rivers kind of girl before. Family and friends say I became a different child pretty much overnight. My 14 year old son was diagnosed last year after roughly 2 years of symptoms and we now know that hEDS and EDS run through the family. He is currently diagnosed HSD. Eldest son has the heart rate increase and is also pretty extreme in terms of his hypermobility, but is aymptomatic so not diagnosed, but has other issues. So I assume there is some genetic factor at work. My younger sister, who is actually a half-sister, so not 100% the same genetically has lots of signs of dysautonomia but, despite extensive testing, no-one has been able to pin them down to a specific diagnosis. My mother and both sisters are hypermobile like my son and myself, but they all have auto-immune conditions including rheumatoid arthritis and hypothyroid as well as IBS, whereas I don’t.

Thank you Pistol. I have had the ectopics and arrythmias for a lot longer than I’ve had this stress, but I understand what you mean about the SSRI’s maybe settling the physiological mechanisms for them. I think I am going to call my Cardiologist today and ask his opinion. If he thinks it’s ok I am going to go ahead and start them. If it was just a moderate contraindication I don’t think I would be bothered, but as it’s a major, it’s the chance of a sudden serious event, as suggested by the reports that I’ve read, that worries me. Even if they are rare events it worries me, partly because of the monumental run of bad luck our family has had recently and partly because I am a carer for one disabled child and have another with ASD and OCD so can’t afford to be out of action, let alone worse.

Life has been particularly challenging and stressful recently. I’ve been having counselling to try and help me cope, but it hasn’t helped and now my GP wants to try antidepressants. I have been anxious and depressed, but both my counsellor and GP agree this is reactive to life events, rather than an underlying depression, if you see what I mean. She therefore feels I need something pharmaceutical to support me alongside the counselling. Had a very long appointment with them today, went through all the options and everything flagged up red as a major contraindication with my Ivabradine. In the end she went for 25mg of Sertraline, as she felt the reactions mentioned are extremely rare, so it’s worth the risk. On coming home and checking the interaction myself I am not convinced I should take them. I already have lots of ectopics and occasional arrhythmic patterns and the main reason for the contraindication is the potential for dangerous arryhthmias, atrial fibrillation and prolonged QT. I would also have thought a baseline ECG before starting them would have been sensible, whereas I have just been told to start them and go back in two weeks for a follow-up appointment. I am not sure what to do. I do think I need more than just therapy to get through the mountain of stress that’s been growing rapidly in my life recently, but there don’t seem to be any options that are safe. Does anyone know of any safe options for anti-depressant treatment that can be taken with Ivabradine?

No, we have watched his diet carefully and can’t find any common link. He eats at 6.30 pm, goes to bed at 10.00 pm and the episodes generally start between midnight and 2.00 am. It will even happen on nights where he hasn’t eaten in the evening because he didn’t feel well enough.

My 14 year old son was diagnosed with pots earlier this year. (He was already diagnosed Hypermobility Spectrum Disorder - 1 point off a HEDs diagnosis under the new criteria.) Currently on Midodrine, which has helped a little, but not enough. In May he started waking in the night with episodes of nocturnal diarrhoea. We’ve been through everything with our GP and then with the Specialist Gastro Nurses. The assumption was that it must be constipation overflow, as he had this when he was younger. He was put on Movicol (macrogol laxative) but it made things worse and on examination the GP found no sign of constipation, so switched him onto Loperamide for a week to see if that helped. It stopped the episodes, but as soon as he stopped the Loperamide the episodes returned. Gastro nurse suggested stopping all meds for a week, then trying a complete disempaction regime, which we did, but had no effect at all - other than to make his pots worse! He is now seeing a Gastroenterologist, who is basically stumped. (On examination this week, yet again there was no sign of impaction or constipation.) She has sent off a sample for fecal calprotecting tests and taken a raft of bloods to look for inflammation and if anything shows up she will do a Colonoscopy, but she has already said that she doesn’t think it is likely to be an IBD and it may be AD related, in which case she can’t help him any further. The episodes either wake him in the night or start as soon as he goes to bed and relaxes. They are explosive and painful and can keep him up right through the night. More recently he is suffering severe abdominal pain in his central upper abdomen when it happens and of course, as is usual with gastro issues, it sets off lots of AD symptoms in general. Last night, while he was having the diarrhoea he felt a sudden pain in the back of his neck, which then started to burn. He suddenly felt extremely disorientated, confused and felt like he was losing consciousness, but not in a potsy way. I am not sure if this is related to the diarrhoea or his HSD, but am concerned that if it starts happening regularly there is the possibility it could be CCI. Has anyone experienced anything similar or does anyone have any thoughts about what could be causing this? Some sites I have read seem to suggest nocturnal diarrhoea is a symptom/red-flag for AD, but I can’t seem to find much else about it, other than it can be a sign of diabetes, which has been ruled out.

I have similar episodes and have been looking for the reason for a long time. I’d agree with others that have said it’s most likely adrenaline surges. This video about sleep problems in pots explains how repeated small stressors contribute to increasing stimulation of the sympathetic nervous system, which leads to this sort of sleep disturbance. It made a lot of sense to me and I think is most likely what’s at the root of my problem. https://m.youtube.com/watch?v=4qOvHeUgwmQ

It’s strange how it seems to work for some people and not for others, although I suppose it depends if you are deficient before you start taking it. I wasn’t expecting it to work, but was desperate enough to give anything a try and have been pleasantly surprised. Also strange how it seems to cause your adrenaline rushes, but reduce mine.

I was diagnosed in my mid 40s and the dr traced my medical history to conclude I had my first symptoms aged 7. My son was diagnosed yesterday, aged 14 and has has symptoms since he was 11. We have HSD (one point off the new criteria for HEDS) and have been told it will be a case of management, rather than ‘cure’ for us, because of the underlying cause. I have been on Ivabradine for a couple of years now and it has helped a lot, but loses efficacy if I am ill or have a massive amount of stress to deal with. Over the years, the best times for me, symptomatically, have been when I was able to get and stay fit for a while, as obviously increase in muscle mass and skeletal pump effectiveness is always going to help people with an HCTD. Unfortunately, as you will probably know, it’s not that easy to stay fit all the time when your connective tissue has other ideas or you are too symptomatic to even begin building your fitness effectively (like my son at the moment).

Not tried birth control (I am not allowed to take it due to vascular type brain lesions) but have found adrenaline/panic type feelings have massively reduced on a decent dose of Chelated Magnesium. I was very sceptical, but started almost a month ago and am shocked at how much calmer and less stressed I am. I am also sleeping much better and my scary night episodes have reduced in both frequency and severity. (I was having adrenaline/sympathetic surges repeatedly all night during my pre-menstrual phase and since becoming perimenopausal, that was 3 weeks a month and rising.) Might be worth a try? If you do, you may want to avoid Magnesium Oxide, as it may upset your stomach and not get absorbed. Magnesium Taurate, Glycinate or Chelated are the best ones to go for in my opinion. Some cardiologist are now saying that just about everyong would benefit from some degree of Magnesium supplementation for hearth and nervous system healthy.

Interestingly, about three weeks ago I started taking Chelated Magnesium two in the morning and two at night before bed and have also found it really helps, particularly with sleep, a reduction in adrenaline surges and generally feeling calmer. My night episodes have dramatically reduced in both frequency and severity and my restless legs are significantly better, as are the muscle tightenings I was getting at night. I am diagnosed and clincially, still have POTS. I’m on Ivabradine and while it has really helped, I have been struggling recently after a very bad bout of flu back in February, on top of lots of stress and have found that recently the Ivabradine isn’t lowering my hr enough to reduce symptoms. I am hoping, if I keep getting better sleep, via the magnesium, that I will eventually be able to increase my exercise to improve my fitness and skeletal pump, which should help with venous return and hopefully help reduce the tachy. A few years ago I managed to get really fit and strong (it took a very long time and was anything but easy) and that is the only time I can remember my POTS symptoms being under what I consider to be a decent level of control. I really want to get back there and know it’s going to be a long journey - again - but am hoping that improving my sleep is the first step towards it and the magnesium definitely seems to be helping with that. Having said all that, my 14 year old son got his TTT results today and was also diagnosed with POTS, unfortunately for him magnesium hasn’t been as helpful. I do think he is sleeping a little better than usual, but he’s still so poorly that he is now being signed off school for the rest of this school year. We’ve tried all the usual non-pharm measures with him and while they have reduced the frequency of his faints, his exhaustion and autonomic symptoms have been crazy recently (actually since his TTT). We’re now waiting for him to see an EP to discuss whether it’s time to try medication and if so, which one. So it does seem what works for some of us, may not work for others - even when we are closely related and have the same underlying mechanism to our POTS/AD - in our case EDS/Hypermobility Spectrum Disorder.

I am back here again, trying to find answers to my nocturnal episodes. I have been trying to get a referral to have them investigated since last year, but noone knows where to send me. I am already under an electrophysiologist, the local pots clinic is basically just a cardiology department, endocrinology was suggested, as there appeared to be some sort of hormonal/monthly element to the episodes until recently, but ultimately I was told they have written to the pots clinic to ask for advice where to refer to and had no response. I am now planning to ask for a sleep study. I doubt it will find much, based on others’ experiences, but it’s a start and will potentially rule certain things out. My episodes have been getting steadily worse. They used to be only during the luteal phase of my cycle, but are now pretty much constant and much worse in nature. The last fortnight has been absolute h***, with me basically being up all night every night with whatever these adrenaline type surges and wakings are and I ended up sobbing to my poor exhausted husband at 3.00 am this morning because I was so exhausted, but my body wouldn’t let me sleep and there is no prospect of help on the horizon. I am a carer for two children who have disabilities (one ASD, the other HSD/JHS & POTS) and I need to be able to function and drive them to and from school and medical appointments, etc. Hence me being online looking into POTS and sleep again today. I just happened across a UK Cardiologist who is very interested in the sleep issues which occur in POTS and has done a series of relatively recent videos on youtube on the subject. The first video in the series was such a relief to watch - he gets it and has some ideas what we can do about it. I am still working my way through the videos, but thought I would post a link to the first video in case someone else finds it useful.

What dose of Ivabradine did they start you on? It needs to start low and be gradually titrated up. I was started at 2.5 mg once a day, then twice a day and that was increased after a couple of months. I cannot tolerate beta blockers either. I couldn’t even stand on Bisoprolol, even on an exceptionally low dose. I had initial problems with nocturnal bradycardia (recorded on an oximeter and bp monitor) for which the symptoms were very similar to what you experienced, but, seemingly paradoxically, that stopped when my dosage was raised. I really argued with my EP when he said I needed it increased to stop the bradycardia, as I was terrified it would make things worse, but he was right. I am now on 3.75 mg twice a day, no longer have the bradycardia and my quality of life has improved a lot, although I now want to try the volume enhancers I initially refused to try and improve things further.

Hi, I am from the Birmingham area and have POTs, but was diagnosed privately in Gloucestershire. Now under the care of an Electrophysiologist at Solihull Hospital. There’s a POTs clinic at the QE that I’ve heard good things about and I believe one in Coventry, but if your CCG is anything like mine an out of area referral will probably be an uphill struggle, at best. My TTT was fluffed for the same reason, ie, they didn’t wait for a period to get a baseline hr before starting. I was extremely ill that day, to the point of my husband having to pull off the motorway so I could lie down, as I couldn’t sit up anymore and I developed the worst migraine I have ever had in the journey as well. Then I had to walk from one side of the hospital to the other just before they started my test. My BP was through the roof, never recorded that high before or since and my usual problem is low bp. My hr was 90bpm, when supine was usually 62-68 max. Fortunately, despite all that I still had a 50 beat increase, although that was low for me (I usually go from 62-68 to 150-175) so I was still dx with POTS. I also had a 24hr urine capture at a different time, which found my aldosterone levels were shot and I wasn’t sodium sparing at all. I couldn’t afford treatment privately, as the testing came to over £1,000. He did try me on a v low dose of Bisoprolol, but I literally couldn't stand up while I was on it. I am now on Ivabradine, via hospital/consultant-led care, as my GP refused to prescribe it. It has massively improved my hr increases and my general quality of life, but hasn’t been the whole answer for me. Resting hr is now 52-56, increasing to anything from 90 to 120 orthostatically, but I have had some issues with nocturnal bradycardia and I am about to ask for a referral to look at trying volume enhancers and another to deal with my scary night episodes. I recently had an ambulatory ECG too, as I have been having palpitations and pre-syncope on micturation, but typically my body decided not to do it while I was being recorded! Sadly, my 13 year old son is now also suspected of having POTs. He has fainted and fallen downstairs top-bottom three times in the last couple of months and had suspected neck fractures, etc as a result (thankfully it was just severe bruising). He is also fainting when seated and is very symptomatic whether he faints or not. He has lots of signs of dysautonomia (parasthesia, numbness, burning skin, temp dysregulation, gastro issues, pupillary dysfunction, etc). He’s under Birmingham Children’s, who have been great and has had a full cardiac workup, which was all ok, now discharged from cardiology to neurophysiology and will be having his TTT shortly, but, they have told us they don’t have anyone that knows enough about POTs to treat it, so will have to refer on, if/when he is diagnosed. I do think the West Midlands are a real deadspot for POTs and Dysautonomia specialists. (Actually the same goes for Ehlers Danlos knowledge/specialists.) The best ones all seem to be down in London. Have you looked on POTSUK and STARS for a POTS aware dr? They don’t just list private drs, so your GP may agree to refer you for ongoing care if this private Cardiologist throws the TTT data into question. My GP only took notice when I bought an oximeter and created a table based on home stand tests. She was sceptical, so she did one in her office and was really shocked at the result. You don’t need a TTT for a diagnosis by the way, a stand test, done properly, is enough. All the methods and criteria are on POTSUK and Syncope.co.uk. Good luck with this Cardiologist, I really hope he helps get you on your way to a diagnosis, treatment and ultimately a better quality of life.