Jump to content

Womble

Members
  • Content Count

    67
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Womble

  • Rank
    Advanced Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. 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
  2. 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 think
  3. 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
  4. 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 bec
  5. 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. I
  6. 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.
  7. 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 f
  8. 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
  9. 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.
  10. 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 abl
  11. 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 wor
  12. 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 Feb
  13. 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
  14. 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
  15. 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 do
×
×
  • Create New...