Thanks Jules, I really appreciate the information. I will start by looking to get the FIESTA/CISS MRI and based my Dr’s interpertation of the results, take from there. I’ll update with the results here once I get them
It is good to know that Amitriptylne does have some effect on the pain, I have read many stories even in LPR/GERD related forums where people did find relief to throat pain using this also, some sounding almost too good to be true - so I’m very tempted to try it
I’m really sorry to hear you’ve been struggling to the degree of needing to be on it for so long.. I hope you have found a way to manage your symptoms
I’m good now, thank you, the meds keep pain at bay! I’ve had myofascial release massages over the last 6 months which are really helpful, & am trying to work on posture too- I think neck & shoulder tension have been contributing to the nerve pain too, I don’t think it’s just an ES symptom which never went…Let us know how you get on with Amitriptyline if you do try it!
Yes for me I can definetly say that there is some link between the upper back (specifically traps) and my symptoms worsening. I reccomend trying dry needling of the traps with your physio, I’ve really found that helps along with sports massage.
I just wanted to get your opinion on something, if I understand correctly you mentioned that Amitriptyline was initially helping you with the symtpoms almost fully but after having a disc surgery you believe the structures in your neck all shifted a bit causing symptoms to become too much to handle even with Amitriptyline
As I re-read my own posts from over 2 years ago in this thread, I realise the last time I had a terrible flare in symptoms as im currently experiencing - I mentioned I had recently lost some weight
Over the past year I have lost atleast 20 KG (44 LBS or 3 stone) as I have been on elimination diet after elimination diet to address what I thought were GI/LPR issues causing my constant sore throat. I’d say im ‘under weight’ right now as I did not intend to lose weight it was simply a biproduct of all the strict diets I’ve tried to address the throat.
I am now wondering again if this has maybe caused my symptoms to flare as with that amount of weight loss has clearly changed the size/width of my neck very significantly (several shirt sizes), potentially causing the calcified ligaments to be touching or impinging different structures/nerves as to when my neck would be significantly wider/larger.
It seems very coincidental to me that the very worst times I’ve had have all coincided with significant weight loss. What is your opinion on this theory?
I’m currently persuing an online consultation with one of the Dr’s on the forums list and pushing for the MRI regardless of this and ofcourse I cannot put the weight back on overnight but it might be worth trying to gain some weight in a healthy way to test this theory
@Gtx - Significant weight loss changes many things in your body including hormone levels & other body chemistry fluctuations in addition to the physical changes you’ve suggested. We’ve had members, more women than men, note symptoms increases with hormone level changes. I’m just suggesting that could be part of why you’re experiencing your current symptoms flare.
Since a sore throat is a common ES symptom, & one that some doctors wrongly require as necessary in order to diagnose a patient w/ ES, I expect it’s your styloids, not a digestive disorder that has been causing yours. It seems you have also come to that conclusion so I’m glad you’re reaching out to a doctor on our Doctors List.
I think your suggestion of putting some weight back on in a healthy way is a good plan. One way to help with that is by adding muscle. This doesn’t mean becoming a body builder, but by doing some training with light weights (5-10 lbs to start), or even just your own body weight, for 10 min/day, 3 days/week, you’ll succeed. There are videos on YouTube & likely other places that could help you get started. I’ve just begun a similar program though not for weight gain but weight loss in order to stimulate my metabolism. I also walk & hike for aerobic benefit.
Please let us know what you learn from your consult with the ES doctor you’re contacting. I hope (s)he is very helpful & supportive.
I’ve not had surgery for my prolapsed disc, it has eased with physiotherapy and avoiding some activities which I think caused it… I’ve been on the Amitriptyline for quite a while now- it eased the nerve pain enough to manage symptoms so I opted initially to not have surgery. It was a year or so after this I then started having the disc prolapse & vascular symptoms started along with that. It was the vascular symptoms which then made me change my mind about surgery, I couldn’t live with those! I think the shift after the prolapsed disc and increased exercise around that time probably brought the styloids into contact with the IJVs & the exercise probably made the head pressure worse… It makes sense that perhaps losing weight for you has altered things in the neck a little- it’s such a cramped space that I guess even a couple of millimetres can make a difference… Fat can be stored under the skin in the neck which I would guess doesn’t really affect symptoms, but also deeper in the neck so that potentially good? It’s an interesting idea that it’s caused your symptoms, & seems pretty plausible if you’ve lost weight twice & noticed it both times! Often elimination diets are similar to an anti-inflammatory diet though, and some members have found this has helped symptoms, so you’re unlucky with that
Thank you both for the detailed and thought through responses (as always!)
I also do strongly lean towards my symptoms being due to the styloids (calfified ligaments not the process I would guess).
The weight argument is very interesting, for me personally I’d say my neck size would have shrunk by something like 25% at least - Enough for it to be very noticable to the naked eye. It was mostly muscle on the neck that has been lost.. I’ve lifted weights most of my life but have replaced it with cardio/lighter weights in combiniation with the diets at an attempt to improve gut health.
For better or for worse that has defintely changed the entire structure of my neck, as Jules mentioned even a couple of millimetres could make a difference in the area the styloids/calcified ligaments are angled or what nerves they are/arent touching
Whether or not this process is reversable is another question but I think its worth easing up on any elimination diets for a while and seeing gaining some weight back healthily changes anything while persuing the scan/consultation
One of my symptoms that occurred early on was 24/7 one sided sore throat. Mine has been going on for three years now, and thankfully in January I got diagnosed with Eagles. I am sorry you have this too, it definitely can impact your quality of life.
Im sorry to hear you’ve been dealing with this for so long, it does really wear on you to have it be there 24/7 without any relief, I can relate to that part - although mine is less one sided than it used to be.
Have you had any treatments / medications that have helped you?
