It took my JVs several months to expand more fully to help blood flow. It’s been same on both sides with improvement coming with more time as brain expands JV width over time after compression removed. Have another scan of JV width with NHS QS this month & hoping report will show JVs have continued to widen. So in early weeks maintain hope that time & healing will see some more meaningful improvement. I am at week 10 post styloid op right side & things are still changing. I only just started to sleep through night this week. Fingers crossed for you 
D
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If you want the details of how ops we’re done you can ask Mr T for the op reports. He does not routinely release them but he gave me my op report from fusion/C1 trim when I asked for it. D
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Mr Hughes provides op reports too if you ask. D
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@Leah i am thinking about this medication as my anxiety and heart palpitations are hitting through the roof. I am only getting at max 5 hour sleep and waking up at 4 AM with anxiety attack and palpitations and can’t go back to sleep even if I take over the counter sleeping pills. This is new for me. Not sure what is causing it.
I really do not know much about the side effect of this medicine but heard it can cause a lot of side effects. What is your experience on it. Does it make you stay at sleep.
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I took amitriptyline 25mg for quite a bit, it was for pain not insomnia but it did help me sleep. I had no side effects aside for some drowsiness for the first week but after that I really couldn’t tell I was even on it. My wife is also currently taking it now for her NTOS and she is also not suffering from any side effects at all.
If you are looking for some medications that act as much stronger relaxers and tranquilizers you might want to look into tizanidine or some muscle relaxers. They work right away as oppose to amitriptyline that takes some time to build up.
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How long does it take to build up in the body? I am looking for something to dampen my anxiety and treat my insomnia so I can at least sleep. What dose did you start with ? 25mg. Did it make you feel less anxious? Something is triggering anxiety in me.
Amitriptyline for me helps me sleep, I take 20mg in the evening- I still wake up but get back to sleep away…When I had a bad spell of nerve pain I increased it to 30mg but it caused palpitations.
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Unfortunately it didn’t help me with my pain so I don’t know how long it took to reach full effectiveness for me, but the side effects only last about a week. I heard it takes 2-6 weeks to start really working, everyone is different. Usually they start you off on 10mg.
It is not really given as an anti anxiety as we have much better drugs for that. It’s usually for some form of nerve pain and insomnia, it might help with anxiety but I think it’s more of a bonus rather than the main reason why it’s usually prescribed. It was originally created as an anti depressant but that’s only with doses starting at 200mg.
If you want something to work right now and doesn’t need to build up I think muscle relaxers might help, especially with the sleep. They also didn’t help with my pain but they knocked me out.
Gabapentin (of which I’m currently on) is another option for helping you sleep and has greater anti anxiety effects. It also kicks in much faster. I would not, however, take this as my first choice because the side effects are much stronger than amitriptyline and there’s definitely a dependency that you would need to slowly wean off of it. But something to keep in mind.
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Since it is new to you, could it be irritation/compression of the vagus nerve? I don’t know with the shave if he has to get near the nerve, but seems plausible that swelling could be a problem. And if that is the case, then time will heal and steroids could help get you through the possible swelling side effects…but for me they cause insomnia. I have micro-dosed them though to mitigate the insomnia.
I have zero side effects from elavil. When I went up to 50 mg, dry mouth was annoying.
I am also on Gabapentin 300 mg 2-3 times a day. It absolutely makes me sleepy, does cause dry mouth, weight gain and bloating and slows the mind. When looking up bloating on reddit, I did see it was used for anxiety as well, but haven’t looked it in detail. Just learned if taken with some fat (yogurt) it reduces the bloating. And the bloating was significant but seems a rarer side effect.
My surgery is upcoming. I do wake when the meds wear off and my mind begins to run (which is it’s preferred way to process). I take my meds, and listen/watch something mindless… right now liking some hiking videos… and I go back to sleep after an hour or so. Suspect it is the Gabapentin slowing my brain.
Years ago I did have anxiety and panic attacks. Was prescribed Inderal which was wonderful for eliminating heart palpitations. However, I ‘think’ it caused me insomnia… but that could have been left over adrenaline from my anxiety.
If you know of Andrew Huberman… came across this for my friend with anxiety.
https://www.youtube.com/watch?v=u0OBgihk2f8 The data for a double inhale and long exhale is compelling. Andrew has longer talks on the body brain chemicals for sleep. https://www.youtube.com/watch?v=h2aWYjSA1Jc You might can glean some helpful tips. (However, I do believe you need external help with this acute problem … )
I also use alternate nostril breathing. https://www.youtube.com/watch?v=8VwufJrUhic
I hope you have a good PCP who will help you through this. We are all rooting for you. Please reach out if falling in a hole.
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Also, since your problem has been vascular, can’t recall if you also had nerve issues prior. I did have significant nerve issues… My hope when this became acute was the nerves were irritated and they would settle, but had no help from any clinician to figure that out. They have settled significantly (but not enough to avoid surgery). So perhaps that is what is happening to you (irritation) and perhaps knowing this is temporary will also help with the anxiety.
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@KoolDude - I totally agree w/ @Leah - sounds like your vagus nerve is over stimulated/irritated. As you know nerve pain meds are typically anti-anxiety or anti-depression. Elavil & Flexeril are both good ones to help w/ muscle relaxation which could in turn calm the vagus nerve & relieve anxiety & heart palpitations. It’s definitely worthwhile seeing your PCP about this to discuss options. If one medication gives you terrible side effects, then you know there are others you can “test drive”.
I also agree that your current symptoms may be related to the post op inflammation & nerve recovery. Icing your neck just before going to sleep might be helpful in reducing inflammation. These days, I often go to bed with ice on some part of my body 
and almost always find it helpful. I’ll be praying that these symptoms will soon pass. 
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And YES on the ice… forgot that one …
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Thank you all for the support and advice. I really appreciate them in this time of uncertainty. Somehow, I start getting anxious thoughts and sleeping has been a challenge lately. Before surgery I would wake up in the middle of the night, but it will take me an hour & half to go back so I would get at least 6 hours of sleep, sometimes 5 hours but now it is deteriorating to a point where I can’t go back to sleep. I did have generalized anxiety issues since in my teens and it would always flare up when I got sick with the Flu or stomach bug but now it is being triggered by every thought (racing thoughts). I was trying to save whatever is left of my hearing. my hearing is rapidly deteriorating to the point of severe to profound hearing loss (can’t hear words very well anymore - my kids are frustrated that dad can’t hear them) which even hearing aids won’t do much. I am afraid whatever is left of my hearing will go if the IIH is not put under-control.
Preface all with I am not a doctor … ))
That your anxiety flairs with you get sick (to me) points to inflammation causing the anxiety (much medical literature on this). I’ve been looking at this for some family issues with anxiety. I suspect your brain and body are inflamed and we need to settle it down.
Insomnia creates a cycle which is hard to break. And when thoughts run amuk like this, no amount of trying to stop them is likely possible… and causes frustration, which adds to the cycle. And truly you have a lot to worry about with young kids and loss of hearing…I’m so sorry you have this to deal with.
Suspect your brain chemicals are on overdrive. (Anxiety and depression are chemical/physical issues … have long said the word mental connected to them is the wrong implication…just as one can’t ‘think’ their cholesterol down, same with anxiety/depression/other issues that stem from brain/body chemistry dysfunction). And I’m in no way discounting that you already have inflammation in your brain due to the vascular compression…just that there is likely another layer for some period of time.
Couple of thoughts (and no need to reply …)
Are you comfortable asking for a steroid pack?
Can you lay flat? And if so, can you very gently apply pressure, pull on the lower side of your neck with compressed IJV to see if can get some blood flow?
Is your digestive system a mess? Mine is without sleep and with anxiety. Please add generous amount of probiotics and eat anti-inflammatory foods.
Please consider your body’s reaction critical with regard to your healing… meaning if you need to go back to bed until noon then you must and if you need to go to the ER for help, then you must. I can imagine the pressure to be ‘ok’ is immense, but sounds like you are not ok… and you need the grace and time to get there.
Sending all with the knowledge that you may know all of this. But also with the knowledge that when things run amuk it is hard to think straight. Hope this does not come across as condescending ))).
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Perhaps, I should ask for it although my PCP thinks all of my problems (IJVS included) is anxiety related so the history is not that good.
I tried this one just now. I do not feel anything different. BTW, my incision is only 2.5 cm and it is healing well, no pain or swelling that I can see. The only symptom I have is plugged ears like I was in airplane and the need to constantly pop my ears and temple pressure. I had it prior to the operation but it is on steroid now. I suspect CSF leak in ears due to my long standing IIH causing my hearing to decline.
My
Yes, indeed and I do eat healthy diet.
I am definitely not ok and have not been for years. The strange thing is that, after 4 or 5 hour sleep I will wake up and feel no drowsiness in the morning. I Just feel spacey a little. Then when night comes I feel sleepy at around 9 pm when I try to sleep, I wake up immediately with heart pounding and anxious thoughts and it will be difficulty to sleep again. Thoughts of never being ok…thinking may be other serious neurological diseases are at play here…etc. In the morning. I am ok for the most part but negative rumination brings on anxiety so goes the crazy cycle. To even get that 4 - 5 hour sleep, I take OCT Zzzquil but I know this is not long term solution so I need something to calm my mind and sleep.
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@KoolDude I didn’t know for sure until my recent surgery but now it is clear that I get surgery induced anxiety/brain inflammation every time I have had surgery. It is terrible. I agree with @Leah and @Isaiah_40_31 about brain inflammation the vagus nerve. Recently I added Ashwaghanda root twice a day for anxiety, sleep, inflammation, stress etc. It does a lot of things and it may not be right for you but I wanted to pop in and mention it. It helps my husband too but for me I was very skeptical. The first thing I noticed for me was the anxiety decreasing.
I also have been icing both sides of my neck from underneath my earlobes down to clavical and it has been surprisingly calming when I do this. I do it every night even when I don’t think my neck needs it because I know my whole body and mind do.
I also do the double inhale slow exhale throughout the day and night that @Leah talked about.
I hope you start to get some relief soon. Thinking of you.
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@ButterflyWishes Thank so much. Now that you reminded me, I used it (Ashwaghanda root) a while back (a few years ago) and I remember it did help a little. I will definitely give a try again. How did your post-op anxiety manifested?
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@KoolDude I also picked some Quercetin based on @Danielle1 s recommendation for inflammation. Will be taking after my surgery and will report back.
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@KoolDude Thats great you have had good experience with it and I really hope it helps. It manifests as elevated heart rate, waves of impending doom, waking up multiple times a night with my brain and heart racing, no stress tolerance to the simplest things, sweating, crying, surges of adrenaline, overwhelming feelings of never getting well and I’m sure I’ve missed some stuff. My brain feels consumed with inflammation when this happens and my cognition is very poor during this as well. I have been on Ashwagahnda now for 2 weeks and for me I noticed changes by the end of the first week.
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A few ideas from my own experience with insomnia/hypersomnia.
When it was really bad, I set up a camcorder filming me at night to understand what’s been happening. Over a few weeks, I found out these two things:
- on some nights I had quite a good sleep even if short. Very few wake-ups, sleep duration about 5-7 hours.
- on bad nights, there would be lots of micro-wakeups that I wouldn’t remember. They would mostly happen after awhile after rolling to sleep on my right shoulder, or on my back
With the sleep doctor, we theorized that it could be acid reflux due to the position of the stomach while lying on the right side, and obstructive apnea when lying supine.
Previous sleep studies shown high number of apnea events (20-30), half of them were central apnea as opposed to obstructive.
Also I track my sleep using a Fitbit tracker. It shows oxygen variations during the night, and fairly enough, I have high SpO2 variations during the bad nights.
As for anxiety, unfortunately, I am less able to say anything useful. Doctors also kept firmly stating all my headaches and other symptoms were obvious anxiety signs, though as we all now know, it was total bs, as those specific headaches have disappeared since the Eagle’s surgery.
Though in late 2020 and early 2022 I tried two types of antidepressants for off-label use. One was amitriptyline, which immediately lowered my blood pressure which already was on the lower side. Two-three weeks later I abruptly stopped taking it as I couldn’t stand its side effects, also given that it was zero help from it. There were mild withdrawal effects for about one week.
The other one was a tetracyclic pill, Sandoz-Mirtazapine. Stopped taking it after about ten days due to the effects (it made me totally restless, and actually anxious - that’s how I know that what I feel isn’t that type of anxiety).
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