Oh no… not again…

I’m dreading going to sleep tonight. I have an unstable heart rate, and every now and then it goes totally haywire. Last night I was kept awake until 3am with a racing heartbeat, quite irregular, sometimes thumping, just as I’m about to drop off to sleep, it will start. I’ve been diagnosed as having supraventricular tachycardia, extra beats.
Last week, I had another episode of loss of consciousness. I had fallen asleep on the couch, got up and felt pretty awful, walked around for a bit and then went up stairs to take a leak. I remember thinking that I didn’t feel good, turned to look at myself in the mirror, wasn’t aware of being flushed or pallid, the next thing I know I’m on the floor crumpled against the bathroom cabinet. I was only unconcious momentarily. Strangely enough the words, ‘vaso-vagal syncope’ were my first thoughts as I woke up.
I’ve had a few moments today when I’ve thought I might be going under again. and I’m begining to wonder whether it is a related problem to the irregular heartrate.
I also wonder whether it could also be HNPP related. Possible if the vagus, glossopharyngeal nerves are affected. Vagus nerve has myelinated fibres which are involved in regulating the heart rate. Glossopharyngeal nerves also have a similar function, and Glossopharyngeal neuralgia, which is similar to trigeminal neuralgia, is known to cause episodes of syncope.
I don’t know whether this is the problem or not, I should visit my GP, but I doubt I will get any immediate answers. It would be good to have some cardiac testing, a holter monitor to keep tabs on my heartrate for 24hours would probably be a good idea. That might lead to some possible treatment, and I would be grateful for something which alleviates this problem as it is quite an unpleasant experience. The question of whether this is HNPP related is very likely to be left unanswered.
Well I must wrap this up. Get ready for another night. I hope it’s not a disturbed one.

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5 thoughts on “Oh no… not again…

  1. Do you have any answers yet if HNPP is causing your heart problems? My husband has HNPP and has been having trouble regulating his heart beat. Our GP feels it may be related, but the cardiologist dismissed the idea. I am now going to head back to the neurologist to see if he can give us any insight. I am interested to find out what your doctors have said.

    • Hi Erin,
      I’m no further toward understanding what is going on. I’m not sure how the problem can be isolated, perhaps by 24hour monitoring, but even then the problem might not appear in that time.
      I haven’t been to see a Doctor yet, I seem to have so many problems to discuss with him, it just seems too much at the moment.
      I think most Doctors would err on the side of caution and say it’s not related to HNPP, but if that’s the case then it needs to be assessed very carefully to find the cause.

      • Thanks for the response. My husband has done a monitor for 48 hours, and there were some odd things that happened that our PCP feels should be looked at, but the cardiologist totally dismissed everything. Our neurologist has now left his practice, we have to find a new doc anyways, so I’m just going to discuss this along with everything else. Good luck to you!!

  2. Just a thought. If I remember correctly, small fiber neuropathy is involved with HNPP. And Autonomic Neuropathy is caused by the small fiber neuropathy (some people develop Autonomic Neuropathy and others don’t). You could have cardiac issues, loss of consciousness, GI problems, HR problems . . . all caused by Autonomic Neuropathy. Something to consider, anyway.

    Good luck!

  3. Hi I want to comment on HNPP and supraventricular tachicardia. I have recently been diagnosed with HNPP via a genetics test. About 20 years ago I had constant episodes of supraventricular tachicardia and had an abblation at that time. I had various episodes of HNPP but didn’t know I had this hereditary neuropathy and had always a feeling that somehow my heart was connected to what I know now is HNPP.. Strange how all of a sudden this is coming up again. 6 years ago I had a heart attack and since then I have many episodes of irregular heart beats, PVCs and PACs. I am taking medication to control what now seems to be again a kind of tachicardia. My heart seems to act up when I am very weak and tired.I will follow up with my cardiologist given that I know now that I
    also have HNPP.

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