I am 8 and 10 months post styloidectomies and beginning about two weeks out from the first, I experienced significant increases in sympathetic tone and experience. My resting heart rate increased significantly. My sleep worsened. I feel as if I am being flooded with adrenaline all day and night. I spoke with my surgeon about it twice and initially he suggested that it was a ‘sympathetic surge/’ I inferred (perhaps incorrectly) that it would correct itself in time. I spoke with him again a couple of months ago and we devised a trial of a transcutaneous vagus nerve stimulator. While I got some relief while using it, the effects wore off very quickly and I got no improvement in my ability to be upright or sleep or to have a reasonable heart rate. I have been investigating blood volume issues as a driver of this but do not have anything definitive.
Yesterday I heard from a friend in Australia who had her surgery (decompression) with Dr Rao about four months ago. She experienced a month of relief which was followed by a rapid increase in heart rate, drop in HRV and decrease in sleep quality and time. She feels awful, and like me, cannot take the usual sympatholytics without tanking blood pressure.
Both of us are bedbound and in constant flight or flight. It has been interesting comparing notes–we both have relief of our intracranial pressure, but this new problem has been just as devastating if not more so.
Anyway–just wondering if anyone else here has experienced this and has any advice to share. Thanks!
I am so sorry to hear you’re suffering with this and hope others chime in with helpful info, did you have C1 shaving and other associated decompression techniques during your styloidectomy? I looked back through your posts but didn’t find any surgical notes.
It has been a while since your surgery; nerves can take a long while to heal but I would’ve thought it would have improved by now. What have you tried to settle the vagus nerve other than the nerve stimulator? Would beta blockers help?
@SCJeff --Just styloidectomies. My surgeon likes to do one thing at a time and in fact, removing the styloids seems to have resolved the IJV compression. Both calcified ligaments got left in due to nerve signals when going after them. So they are no longer compressing the IJV, but they may be irritating something else.
@Jules --yes, I suppose iit could be VN stuff, but it is taking a long time to heal or even show signs of healing. I do believe Harry is my friend, though I know them from another forum! Great call! I’ve done all the VN things I can imagine that seem to have any value. I am curious about the possibility that the baroceptors in the carotid sheath were damaged in some way. Rather than the parasympathetic being turned off, maybe the sympathetic is perpetually on? And the VN can’t compete?
I also have a recently discovered and documented very low blood volume which is probably triggering adrenaline day in and day out. I am trying to address that now. But even dealing with that, I know that something changed pretty dramatically, For instance, I had been taking 2.5 mg of ivabradine to slow my heart rate once or twice a week when it got too high from POTS, but right after the first surgery, I started needing --and continue to need–2.5 mg twice a day every day, so at least 7 times as much, and still my heart rate is higher than it was pre-op. Hard to know what is going on, but it would be nice to figure it out! Thanks all for your thoughts.
@jyoti - Would you consider getting a second opinion regarding removal of your calcified stylohyoid ligaments? There is a chance they could be tangling with your vagus nerve further from the skull base. Dr. Liu in NJ is also a neurosurgeon who has a lot of experience. Perhaps another set of eyes, on any updated imaging you have, might be able to shed some light on what could be causing your current symptoms beyond low blood volume.
Funny…I have been thinking about Liu. I did talk to Cognetti and his neurosurgeon, and they seemed not to see anything, but I don’t think I got a lot of focus from either of them.
Hi jyoti, Your major priority before anything else is an ECG to exclude atrial fibrillation or another atrial arrhythmia given that you are taking a way too high dose of ivabradine for someone that has had successful internal jugular vein decompression surgery to remove the cause of their POTS.
Firstly the Ivabradine is obviously not working, but even more importantly, this drug reduces heart rate by directly slowing the sinus node in the heart and thus reducing the heart rate. When this primary pacemaker (sinus node) in the heart is heavily inhibited the heart becomes more susceptible to secondary arrhythmias which are very dangerous.
I wonder if having the styloids removed has shifted the calcified sections of ligaments enough to either be irritating the vagus nerve or the carotid sinus as you’ve suggested , that’s a good suggestion too. So a consultation with Dr Jui might be worth a try…
Thanks @Emerald for the info about ivabradine, I’m not familiar with that medication.
@jyoti have you had an ECG at all to check if there’s something else going on?
@Emerald BS @Jules – Good suggestions. Fortunately I have had way too many EKGs over the last few months, probably at least two a month and quite a few of them continuous monitoring. No Afib or other arrhythmias. But good to consider. And as well, I am now taking just half of the prescribed dosage of ivabradine, but for me it is a huge uptick. Styloid removal was not to address POTS, though of course I had harbored some hope that it might. It was to resolve IIH and leaking and seems to have accomplished both of those.
Hmm have you been looked at for other compressions? Do you have EDS by chance? In my case I’m not sure what’s causing my heart rate stuff because it could be my jugular compression, thoracic outlet syndrome and may thurner syndrome. I wonder if another compression was made more apparent with your surgery? Just a thought
@kiwi You know, this is a really really good point. Yes, I have hEDS and yes, I know I have May Thurner anatomy. No vTOS, but possible mild renal vein compression. And I have heard that ''fixing" IJV compression can make something like MTS and abdominal compressions more prominent. I also wondered where to start initially but was advised by two really good doctors to ‘start with your head.’ That made sense to me, and a year and a half ago I had a ‘master plan’ which included IJVs, then see how it went and then iliac vein eval and treatment. Unfortunately, in the way of these things, my angio/venogram to diagnose the IJV compressions also found an unruptured aneurysm. So after getting styloids out, I had a stent placed in my internal carotid artery which was supported by blood thinners which in turn caused severely low blood volume and anemia. In other words, I got off track! The thought of getting into MTS just kind of fell to the bottom of my list. But thank you for tacking it up at the top again!
Ah I’m sorry you’re going through all of that! It’s so easy to get sidelined with so many comorbidities, same happens to me ugh. I am starting from top to bottom too actually, I’ll get my jugular decompression and then go from there my biggest complaint is non stop 24/7 debilitating headache so I’m hoping addressing the jugulars helps. I hope that you can find something to help your heart rate l stuff
Well, obviously that took priority, you have been through the wars! I wonder how much is related, you mentioned the heart rate spiked after the VES surgery, was this definitely before the ICA stent? Is it possible that the stent procedure could’ve affected the carotid sinus or did you already have the increased heart rate? And low blood volume + anaemia would increase heart rate too… Perfect storm
Yes indeed. A fairly good approximation of a perfect storm! My heart rate spiked (along, weirdly, with my need for massive potassium supplementation) right after the first styloidectomy. I was maintaining my baseline in terms of capacity for the five months from styloidectomy #1, through #2 and up to the stent placement. Three weeks after i was put on an antiplatelet for the stent, I really crashed though. So I already had this increased heart rate/sympathetic issue which i think was a bad place to be when I started losing red blood cells and blood volume as a result (presumed) of the antiplatelet. I am not off that and hope to start to see a return to my post-op higher heart rate but baseline function!
Hi @jyoti and @Harry again, Just was thinking about your increased heart rate and drop in HRV (heart rate variability), insomnia and feeling like your are in sympathetic overdrive.
Has your doctor excluded hyperthyroidism ? ie. the Jod-Basedow effect, an iodine-induced hyperthyroidism.
A single standard dose of CT contrast contains several hundred times the daily recommended allowance of iodine. A healthy thyroid gland can usually filter out this massive influx, but repeated exposures dramatically increase the risk of triggering an overactive thyroid. It can occur from 2 to 12 weeks after administration of the iodine containing contrast.
Hyperthyroidism mimics a state of “fight or flight” because excess thyroid hormone increases the body’s sensitivity to catecholamines (like adrenaline and noradrenaline). @Harry, this may explain the unpleasant effect you had with agomelatine as it can cause an increase in noradrenaline.
@Emerald --good point, again! I just looked it up and I got 18,000 mg of iodine last week during an angiogram. And obviously had more in previous procedures. I have had all thyroid hormones and function tests repeatedly–they seem to ordered ongoing–but one thing I have learned over the years of being ill is that a test in the normal range is not always ok for me.
my biggest complaint is non stop 24/7 debilitating headache so I’m hoping addressing the jugulars helps. I hope that you can find something to help your heart rate l stuff 