I don’t know if a stellate ganglion block might be worth looking into, I didn’t realise it can be used to help with overdrive, @dbeck177 was asking about it in this discussion:
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It sometimes helps, though from what I have read the biggest impact is experienced by people whose sympathetic overactivation is fairly new. It is approved, I believe, for PTSD and has been very successful in that regard. For other conditions, like dysautonomia or POTS, there are mixed reviews. And it sometimes takes quite a number of sessions to make a difference. It is a tough one because it holds promise, but that promise is not really a promise!
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Hi @jyoti. Just make sure that they ordered free T4. They probably have given your symptoms.
Free T4 levels are a more sensitive blood test for diagnosing hyperthyroidism.
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My daughters have hEDS, POTS, CCI, IJV, IIH, MCAS ect. We have found that surgery can significantly raise the probability of MCAS flares. This also drives the sympathetic nervous system into high gear. I hope you find help. Sympathetic overdrive is very miserable! Do you have a good MCAS practitioner on board. Just food for thought…
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@Emerald Yes, free T4 ordered several times over the course of the last few months. My thyroid seems to be one small (but important) part of me that is still robust.
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@Rosa Your daughter and I have so much in common! Every diagnosis, at least. MCAS is, you are right, another potential driver to consider. I wish I had a good MCAS practitioner. I am in several queues and waiting till mid-February for an appointment with someone who may be knowledgeable enough to help on that front. Thanks for mentioning MCAS.
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I am over four years post surgery. A couple of months after, I developed shortness of breath that has yet to resolve. It got better for a while with taking trazodone. Then last. January, like an idiot, I had a hydrodissection of my vagus nerve, and the breathing problem came back with a vengeance. I don’t know if something is irritating it or what, or who to see at this point. The symptoms look a lot like MCAS, but standard MCAS meds don’t seem to help.
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@Bopper – I am so sorry the breathing issues are so prevalent. That is a terrible feeling. Shen you say the symptoms look a lot like MCAS, can you be more specific? Are you talking about lung stuff? I struggle with MCAS because my MCAS symptoms don’t look like classic MCAS. I am interested in what you mean, because mine almost always have to do with dysautonomia. And…you were NOT an idiot. We all are walking around, mostly in the dark here, trying to help ourselves. Sometimes we get it right and sometimes we do not. But we have to try.
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I totally agree w/ @jyoti’s You ARE NOT an idiot comment. We try to make the best decisions we can about what might help resolve symptoms that feel debilitating or are holding us back from being able to live fully. Sometimes the surgery/treatment that seems the most logical ends up back firing. I’m so sorry that happened to you. I wish I could suggest a next step to help resolve your breathing challenge but sadly I can’t. I will pray for you to find the cause & that it can be dealt with. 
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I’m sorry that the treatment didn’t help you @Bopper , it does sound a promising treatment with usually minimal complications, so you’re definitely not an idiot and it sounds like is should’ve been definitely worth a try!
I love @jyoti 's comment ‘We all are walking around, mostly in the dark here, trying to help ourselves.’ , and that sums up alot of what we’re doing…
I hope that the breathing issue does settle soon.
One of our members @BrooklynGirl had a long journey with vagus nerves post surgery, including breathing issues but this did eventually improve:
Bilateral - one out, one remaining - still causing problems? - Support - Living with Eagle
Medication for post surgery nerve pain - General - Living with Eagle
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Thank you for your kind words. I think the best way to describe it is “air hunger.” My lungs are clear, my O2 is normal, but I feel like I can’t get a full breath. It’s weird. It seems like MCAS because it gets worse with high histamine foods and with certain scents (incense, candles, smoke). But so far no allergist has been willing to diagnose it.
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Thank you, Jules. My visceral PT, who is one of the top in the country, strongly urged the hydrodissection. My MD brother was skeptical. Come to think of it, he was skeptical of the surgery as well. And both times, I should have listened to him!
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I remember he was! But we all have to make the decisions based on all the info we’ve gathered, and get more than one opinion… hindsight is a wonderful thing 
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@Bopper Do you take an histamine blockers? I assume you do (or have) because you say standard MCAS treatments do not help. If it is just the air hunger it makes me think of …vagus. Does your chest move freely?
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I haven’t tried histamine blockers, but maybe I need to. Yes, I have suspected vagus all along, and since this conversation, even more so. I’m just not sure where to turn to explore vagus issues more. My diaphragm definitely gets bound up. I think it’s the disordered breathing patterns that I fall into when I start to feel the air hunger.
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Might be worth trying OTC H1 and H2 blockers. I have all the associated comorbidities–POTS, hEDS, etc and my neurologist suggested I trial Allegra and Pepcid. I found that I have a systemic improvement on these drugs of at least 15-20%. No other MCAS-like symptoms, but it all depends, as I am sure you know, on where the mast cells that are activating live in the body. Mine are apparently around my brainstem. There are a lot of exercises to activate the VN and increase vagal tone. I recently bought a box of 54 cards on Amazon, each with a different tactic for activating or soothing the VN. Just to help me remember to do it! And there are also a bunch of transcutaneous VN stimulators out there. I have tried one–Pulsetto–with careful documentation of results and while it is relaxing while being used, it did not move the needle in between. Other devices have more science behind them (wish I had done a deeper dive before I spent $$) like the Neuropod, but it is a lot to lay out without knowing you are likely to get some results.
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Hi @Emerald and the warrior crew
So interesting you suggested looking into the thyroid as the feeling is exactly like the postpartum thyroiditis I experienced 10 years ago… but alas my blood tests show thyroid is happy.
I had an easing for a time for the sympathetic overdrive and since Thursday last week back up it has gone. Under 20minutes of REM sleep as the sympathetic is unable to settle while sleeping.
I have not done the Stellate Ganglion Block. I have gone for some time… which seemed to be going okay until it flared up last Thursday. Really starting to get desperate.
My GP wants me to stop my 30mg duloxetine as it can stop adrenaline from breaking down in the body. But given my current state and the known issues with weening off Duloxetine (causes sympathetic overdrive 
and withdrawal symptoms), this isn’t going to be easy. I am searching for a ‘rehabilitation specialist’ to see if there is someone who can help me. Maybe if I went into hospital to try the Pazocin in a safe setting, so if my low BP crashed I would be in safe hands… I don’t know…
Any other wisdom or experience from others is so so so welcomed.
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I’m sorry that things seemed a little better but have flared back up again, so frustrating, you must be exhausted!
I’m UK & the testing for thyroid - hypo and hyper I don’t think is good enough… I’m not an expert on it, have done some reading around this a while back but have forgotten most of it now…but might still be worth researching what tests were done for you and what the hormone levels are, as it’s quite complicated how the main hormones affect each other? I don’t think GPs are knowledgeable enough about it. Sorry if you know all this from when you had thyroid issues before though!
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Hi Harry, I’m sorry to hear that you are in a bad way.
I’m glad the "penny has dropped " finally and your GP has realised that duloxetine was probably the worst thing he could have prescribed especially given your experience with agomelatine.
Both these drugs increase norepinephrine levels in the brain. Norepinephrine is closely tied to your body’s “fight-or-flight” response. For someone with sympathetic overdrive like you this can cause a worsening of symptoms that you already have !!.. anxiety, racing heart, sweating, muscle tension, panic attack…
The flip side of the coin is that maybe you have stumbled on the solution, the hard way 
i.e. reducing noradrenaline (norepinephrine). I’m glad you a looking for a “rehabilitation specialist” as you are going to need him/her to slowly taper you off the duloxetine… you are going to have symptoms that will not be pleasant for you or for the people around you for that matter (please warn them).
Once you get over this hump, I suggest discussing with your doctor whether a low dose escitalopram taken in the morning and a low dose/shortest acting DORA (for your insomnia) taken of a night time might help.
When your are in sympathetic overdrive, the locus coeruleus (the brain’s primary adrenaline center) and the amygdala (the fear center) over-fire, flooding your system with norepinephrine. Long-term treatment with escitalopram calms this down. Give your doctor these 2 studies :
and this review : Effects of selective serotonin reuptake inhibitors on endocrine system (Review)
My son did use escitalopram at one stage. It helped his anxiety immensely and surprisingly quite quickly but had no effect on helping him to sleep. That’s why I suggest using it with a low dose/short acting DORA.
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@Harry Duloxetine, an SSNRI, is typically pretty effective for anxiety after an initial period (maybe a week or 2) of slightly increased anxiety. It can be physiologically challenging to get off of so if you decide to do that make sure it is a long and slow taper. If you find it too difficult you could talk to your doctor about adding a low dose of Prozac which could help with the discontinuation symptoms and thence off the duloxetine it is easier to get off Prozac with its longer half-life.
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