Newbie ... just introducing myself

[Womble]

Hi

I am new to the forum, but will admit to lurking for a while before being brave enough to sign-up

My diagnoses are Dysautonomia, Pots and CRPS.  I am also hypermobile and my whole family is about to go through the genetic counselling/testing process for Ehlers Danlos.  I also suffer from what they're calling Complex Migraine, but have been unable to tolerate any of the treatments, especially Imigran/Sumatriptan which caused me to have a cardiac event that included loss of consciousness.

I was only diagnosed with the dysautonomia and pots a few months back after years of being prodded, poked and tested for everything from MS to Epilepsy and never getting anywhere.  The only thing that was ever found was multiple white matter lesions, which, at the time I was a bit young for, but have been brushed off/glossed over once they ruled out MS with a lumbar puncture and evoked and visual potentials. Oh - and at the time of my first scan they said there was evidence of recent encephalitis, that I was unaware of.  This was put down to when I thought I had a particularly bad migraine and ended up in bed for 7 days, while I was on holiday with my family a few weeks prior.

I live in the UK and as my husband's new job came with health insurance, he persuaded me to go private to see if we could get to the bottom of things.  I had done a lot of research and kept records from home testing with an oximeter and was pretty sure it was pots, so specifically chose a consultant listed in the DINET directory. Unfortunately, the insurance cover was capped, so not long after the diagnosis I had to go back into the NHS system and there is little or no knowledge or help in my area for the problems I have.  

Fortunately, I was sent to see a cardiologist when my mother was found to have heart issues that are suspected to stem from EDS and I had an ECG at my GP's that was abnormal.  It seems I struck lucky and the consultant I saw turned out to be an electrophysiologist with an interest in pots.  Since then I have had an echo and have just been told this week that my heart itself is healthy, which is a relief.

My current situation is that my GP and the hospital are fighting about who is going to prescribe the Ivabradine my consultant wants me to try (I was really ill on one beta blocker and the other just didn't work).  This has been going on for two and a half months.  I am doing my best to manage the pots and do the non-medical interventions routinely, but it's not easy to keep going sometimes, as I am the mother of 3 children, one of whom has Autism and my husbands job is requiring him to do longer and longer hours and regular out of town trips these days.  I am keen to try the Ivabradine, but also concerned, as my resting heart-rate is often 62 and regularly drops to 56/58 in the night and I have read that they prefer the resting rate to be above 70 for this drug.  Does anyone have any experience with this?  My starting dose is only 2.5mg twice a day, so I'm hoping it will be ok.

What's bothering me most at the moment is the extreme exhaustion I have from repeated, distressing nocturnal episodes.  It's actually those episodes that finally prompted me to sign-up and post. I am going to start a separate thread about them though, as the description and history are quite long-winded.

Anyway, that's me.  I am very happy to have found this forum and look forward to chatting with you all.

[MomtoGiuliana]

Welcome!

Getting diagnosed is sometimes half the battle or more, so good you have a diagnosis to work with.

Hopefully members with experience with ivabradine will respond.  you can also search the forum for this topic (search feature top right).

[Womble]

Thank you.

I will have a look at the search feature and see what I can find.

[Guest ANCY]

Welcome to the forum! I hope you find it as helpful as I have.

I concur with what Momtogiuliana said, getting diagnosed is often half the battle. Although I'm sorry you have these problems, I am happy to hear you are already diagnosed, hopefully that will help you moving forward.

I was on Ivabradine for about 5 months prior to a drastic and sudden change in symptoms in March. It was certainly one of the most helpful medications in managing my tachycardia, resting heart rate on EKG went from 120s to 90s, without dropping my blood pressure. My dr told me that I could only use it as long as my resting heart rate did not go below 60. So when my heart rate was dropping months ago they had me discontinue use. 

I hope you are able to give it a try and see if it's the right treatment for you.

[Womble]

Thank you, Ancy.

It's good to hear from someone that has found Ivabradine helpful.  I am really hoping it does the trick for me, I desperately want at least a little bit of my life back.