Does anyone take medication for their eagle symptoms? If so what do you take & are they helping you? Tia
Hi @Ness! Welcome to our forum. The medications that help w/ the nerve pain caused by ES are either anti-depressants or anti-convulsants. The specific meds most often mentioned on our forum are Gabapentin, Amitriptyline & Carbamazepine. There are relatives of all of these which can be helpful of one of those doesn’t help. It can take several weeks for the nerve pain medication to start working once you begin taking it so it’s not like Tylenol or Advil which help quickly but more temporarily.
Other options are icing your neck several times a day for 15-20 min. (gel ice packs work the best), or an ultrasound guided injection of lidocaine & cortisone into the tonsillar area of your throat, or lidocaine patches applied to your neck or face (for the TN).
As you’ve probably read here, TN is a very common symptom of ES so it’s possible the pain in your face will go away once your styloid(s) is/are resected.
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Thank you. I’m not keen on taking carbamazepine after I had pregabalin which made my heart rate go up to 150bpm and seemed to emphasise my symptoms . Now prescribed amitriptyline which I’ll start tonight. I see mr hughes in 4 weeks time and I’m just hoping he’ll remove them asap. My right one is touching my hyoid, calcified & thickened.
The nerve pain meds can take a little while to work, you might already know that…Amitriptyline has helped me, I take 20mg in the evening- it helps with sleep too! When I’ve had bad spells & tried upping it to 30mg it did cause palpitations though, hope it doesn’t cause that for you 
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The drug Piracetam helped me a lot and improved my condition with dizziness, blurred vision and poor concentration.
I have been using this drug for 3 years continuously.
For pain, I use the medicines that have already been mentioned.
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I’m glad that you’ve found something to help, I’ve not heard of that one before…
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Amitriptilin is really helpful if I have nerve pain. I only take when I need it. It’s also excellent for sleep, I tend to not get the best sleep as eagles and the many symptoms it’s causes wakes me up many time. I take Nytol it’s a herbal drug here in the uk to help, but if I need something more when symptoms worsen I have back up amitriptalin 
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I will tell you what is helping me. I am a very rare case because I combine the following issues: 1. Eagles; 2. Jugular Eagles; and 3. P450 enzyme problems.
This means I can’t take many of the meds recommended for this condition. They just don’t work or can cause nasty side effects. I am scared to take any medication every day other than blood pressure medicine.
I can’t force myself to sleep on my back and always end up in bad positions on my face for Eagles making pain worse.
If I take 100 mg of Gabapentin AND Pepcid(but several hours apart) to deal with silent reflux AND very periodically Low Dose Naltrexone I can sleep without feeling like I am being strangled to death. If anyone has temperature modulation issues Gabapentin seems to help. I don’t take any of these every day and I don’t take LDN on the same day as Gabapentin.
I still have no idea what cranial nerves are being effected by this nightmare since I can’t have an MRI with contrast . It really is trial by error with me on meds.
Gabapentin may help me simply by allowing me to sleep in a more restful position. I don’t seem to end up on my face as much when I take it. I have tried the U shape Leacho Body Pillow . It does help but not enough on its own. I have the added problem of big boobs smashing into my chin that tucks when I am sleeping. Haven’t found a resolution for this yet but a towel seems to help as crazy as that sounds
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Thanks for that info about meds @JugularEagle , & I’m so sorry that the situation is even more complicated for you…I did end up having to sleep in a recliner leading up to surgery because of the head pressure- would you be able to do that at all, you wouldn’t end up on your front that way? 
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So good to read everyone’s experiences with pain meds. I’ve been against taking regular pain medicine in the past few years as I always seem to get side effects which feel worse than the original symptoms, like a different kind of headache or nausea. I was prescribed Amitriptilin last night at the hospital as I’m back in with heart rate at 180bpm on admission and more intensity to my cranial symptoms. It definitely takes the edge off and while still in bed, im not feeling the rapid increase in heart rate when I move/talk/turn my head etc. but the head pressure/pain/dizziness/ear ringing when looking down or turning towards the side of my pain is still there. Most likely because that’s vascular related and not nerve.
Hoping the next few days of taking it will only help more with the heart rate regulation especially. Fingers crossed
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Your heart issue is very concerning
I think you need to also keep looking for another cause… you may have some rare genetic disorder. It is possible you have a number of causes that are combining together.
I know that bombing my system with B12 and other days taking NAC definitely help with some of my symptoms such as dizziness and fatigue. Beware ,though, of genetic factors affecting B12. You can find out more than you ever want to know on reddit about how people deal with the various B12 issues.
If you can afford an Oura ring or something similar it can help keep track of a number of things such as heart rate and HRV.
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I’m glad you’ve gotten a medication that may be able to help calm some of your symptoms, @BraveKat. The racing heart problem is scary & upsetting. I’m still not convinced it isn’t related to your vagus nerve being irritated or compressed by all you have going on.
Some of our members who have distinct head positions that increase vascular symptoms have tried using a soft neck collar to help support their necks & remind them to keep their heads in a more neutral position. For some this has been very helpful in reducing vascular symptoms. The collars are sold on Amazon & through medical supply stores & some pharmacies. It might be worth a try during the day when you’re more up and around.
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Thanks for your thoughts @JugularEagle and @Isaiah_40_31 . I’ve since queried the racing heart with the doctors to see what they think it could be, and since ecgs and bloods aren’t showing anything sinister they have come on board with it possibly being from vagus nerve compression. Since explaining my thoughts on the diagnosis to them, they seem to be doing a lot of reading/discussions internally about ES and vES in the background which is promising. I was started on Pregabalin today, so will report back on the effectiveness.
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If they are starting to look at the vagus nerve maybe they will order the 3d ciss test for you.
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I hope that the amitriptyline does help you, it’s helped me with nerve pain. It can take up to a couple of weeks to build up enough to have an effect. It can cause palpitations & irregular heartbeat though, just to be aware of…I tale 20mg a day, I did find when I had a flare up of nerve pain & tried increasing to 30mg I got palpitations.
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Hello, I am new here, Dx: bilateral ES, TOS, Ijv compression. My most bothersome symptoms include dizziness, off-balance, intracranial pressure, vision issues, tinnitus. Has anybody tried Brilinta? I did see another thread regarding the med, but I am curious if it relieved symptoms and how long it takes? I have only been on it 4 days and so far no improvement. A medication that did work for me was Methazolamide, it was great,until I had a allergic reaction! There was a rare chance with sulfa allergies there could be a problem. And of course that was me, but for 2 weeks I got to feel good! I need to return to work in Dec and just trying to find something to ease the symptoms. Thanks
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I’m sure that others have found it helpful, and Plavix also, here’s one link:
UPDATE: Hepworth, Plavix and Maye Thurner Syndrome - General - Living with Eagle
Here’s another discussion about Brilinta, you could always message any of the members about their experience:
Appointment with Dr Hepworth coming up - General - Living with Eagle
I don’t know how long it usually takes to start working I’m afraid…
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Make sure you don’t have any symptoms of Stevens Johnson Syndrome or the early stage of SJS. That drug has been shown to cause it.
So has pantoprazole which some people here take.
These are rare reactions but I don’t pay attention to the word rare. I have Vascular Eagles. 
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