I’m often on the cautious side with things, and would say amitriptyline isn’t that harmless in general… A lot of information is around about the toxicity of TCAs, e.g.
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I’m not worried about amitriptyline, for one, the does for nerve pain is really low (only just started 25 mg) and I tolerate it very well. Just get a bit lethargic and woozy for the first few days after starting/increasing my dose. Other than that, I have no side effects. We’re gonna see if this offers any relief and if not I may need to try another one, probably Lyrica.
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Thanks, I’ll read that!
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If you start Lyrica please be aware of the side effect of peripheral edema (and weight gain). Gabapentin is very effective for nerve pain.
I have Mast Cell Activation Syndrome (also very rare and not understood) and I have had those sensations of tingling as well as (not at the same time) itchiness all over, random hives and tenderness. The medication used for it is Cromylin Sodium. It has no side effects. Mast Cell acts up in times of stress. It’s basically an auto immune where your Mast Cells go a little haywire. It’s difficult to test for and only Allergists who specialize in it know how to test for it. There is a natural supplement that acts as a Mast Cell stabilizer and a natural anti-inflammatory called Quercetin.
Just a thought 
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My PCP has me on amitriptyline for now, and said he wants to wait at least 6 months post op before trying any other medications
I actually looked into mast cell when my symptoms first began after my allergist brought it up. I know testing is tricky but she was aware of it and whatever test she did on me, she said it came back fine.
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I’m sorry to know you have MCAS, but I’m happy it’s somewhat controlled by meds for you. I have a friend who has MCAS & has to change meds every few months because her mast cells get used to a med after awhile & start being problematic again. It’s a tough ailment to deal with. I have read that for some people it naturally goes into remission after a few years. I hope that holds true for you. 
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Funny thing is I’ve had it my entire life but never knew it. I found out I had it when I first started my research on what was causing the tinnitus.
I have to say that I’m grateful for finding this forum. today was a weird day. I called Weill Cornell radiology department again because they didn’t return my call. I got a radiologist on the line who wasn’t the one who read my scan but agreed to look at my CT scan. He said I have compression of the IJV on both sides due to my styloid processes, not just the left. He said he would email the radiologist who originally read my report to ask her to reread it. Apparently he’s not able to make changes. The ENT who ordered it moved to FL. I just want an accurate read to bring to the vascular surgeon and the ENT head and neck surgeon for 11/2.
I made an appointment with a vascular surgeon for 10/24. The receptionist was really nice (i’m not used to that). He’s the department cheif of vascular surgery and only sees certain patients. She listened to my story of the past 3 and 1/2 years and said she thought he could help. My TMJ doctor today gave me the name of someone who’s treated Eagles. I’ll call tomorrow to make an appointment. @Isaiah_40_31 thank you for looking at my scans. I wouldn’t have known about the IJV compression if you hadn’t mentioned it.
Grateful for this forum. Once I see the specialist I’ll keep everyone posted.
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Dr. Hepworth told me to start researching mast cell. Thanks for posting.
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Please let me know how I can help. In addition to having it, I researched it and know a bit about it now.
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@Danielle1 - Good for you getting a second opinion on your CT scan results. I hope the original radiologist will
Amend the report for you.
We’re always on the lookout for new doctors to add to our list. If you find someone who has done ES surgeries, & especially someone well versed in vascular ES surgeries, we’d love to add the name/contact info to our list.
Seems having ES symptoms served a purpose in your life since it led to your MCAS diagnosis as well! Glad that’s behind you, & you have a path for moderating symptoms.
I will look forward to hearing what you learn from the vascular doctor (so glad you were treated with respect by his office staff!) as well as from the referral your TMJ doctor gave you.
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Great that the radiologist had a look for you, hope the original one confirms the compression in time for your appt. And good news that the vascular surgeon will see you, another step forward!
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Would you be willing to share the names of mentioned physicians?
Thank you and hope you’re well!
Hi @Kay1016,
I don’t know if you’ve seen this discussion which might be helpful:
Generally, we refer our members who have known IJV compression to Dr. Hepworth in Denver, CO. It can be hard to get through to his office so persistence is required. Dr. Hackman in NC has also helped a number of our members who have IJV compression & he’s a bit closer to you. Dr. Peter Costantino in NYC was suggested by @KimberlyNYC - CT Scan Pics, broken styloid or scan error? Compression? - #80 by KimberlyNYC
He isn’t on our Doctors List yet as we wait for a post op report from a member before adding a new doctor, & we don’t have one yet for him.
Here’s the link to our Doctors List:
https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245/5
I thought I saw Dr. Costantino on the list of doctors here, though no one had a confirmed surgery with him.
I don’t know if I have the energy to be persistent with Dr. Hepworth’s office and I don’t do well at altitude which makes me concerned about surgery in CO.
So many important decisions … I’ll know more after my next appt with Dr. Costantino. So far, so good.
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By golly, you’re right! I missed that Dr. Cosantino is on our list. I guess his name was mentioned in the past, but we have no record of anyone on our forum having ES surgery that he did. I corrected his name on our Doc List & deleted the note re: his ES surgery experience.
As good as Dr. Hepworth is, the experience of trying to get an appt w/ him has been tremendously frustrating for a bunch of our members. It sounds like Dr. Cosantino is a great option for you. Please keep us posted about how your appt goes when you see him.
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@danielle1 do you know if you can take Quercetin prior to surgery? Have a call in to Dr. Hackman FYI.
Many thanks,
Leah
Hi there, I don’t see any reason not to be able to take Quercitin before surgery. I’ve never been advised not to. I hope that helps!
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