I was diagnosed Dec. 4th 2015 with ES. My doctor put me on 100ng (3x daily) of neurontin and referred mt to an ENT. The ENT told me he has seen many patients with ES, but he wanted to make sure it wasn't tri- neralgia that was giving me all this nerve pain. He then trippled my dose of neurontin and put me on a steroid for 7 days to get the inflamation down in my neck.ee him again on Feb. 11th.
Has anyone else had confusion and forgetfulness with ES. I have lost 2 jobs in a year now because of it. It is really scary. I have misplaced so many things and have spent hours looking for them.
I really just want to hide in bed all day where I feel safe. Anybody?
This is awesome you found an ent already familiar with ES!
Frustrating to try meds and wait, but it’s easier than surgery.
I get A Lot of confusion and disorientation as a symptom. I’ve been having trouble getting seen by people familiar with ES until now, so my doc this far only think that maybe it’s related to the spikes in my neck. It can he brought on by turning my head, looking up and down tho, and isn’t a terribly uncommon symptom of vascular ES.
I understand your frustration too. I used to travel full time for my business, and now I haven’t been able to drive for a year because turning my head gets me so dangerously confused.
I lose track of a lot of things, get lost in my own house, and when it’s real bad I have to read the same thing over and over because none of the words stuck in my head.
I hope this doc works out for you and you start feeling better soon.
My doctor recently put me on neurotin as well. I have not started it yet, tomorrow I will. I was wondering if you have noticed any side effects from it or how it’s helped you so far?
I did have 'brain fog'- with the jugular compression caused by the styloids pressing both sides on the jugular veins it was causing Intracranial Hypertension, and it made me feel constantly like I was a bit tipsy and had to concentrate as hard as I could to follow conversations etc. I would have real blank moments too.... It has improved a lot with one side done so far. But to have compression of the blood vessels is rare, don't want to frighten anyone! Some medications can have that effect too.
BTW, ES can cause Trigeminal Neuralgia, so I'm not sure how your ENT is going to rule out ES causing your problems just by treating the nerve pain?!! (There are some documented cases if you need to show that to your ENT later down the road, there's details in the ES Info section)
Hi, the neurontin has helped some, the nerve pain in my face is a little better. but the pain in my throat area is still there. About the only side effect that I have experienced is it makes me more tired. Good Luck, hope it gives you relief as well.
kcannady said:
My doctor recently put me on neurotin as well. I have not started it yet, tomorrow I will. I was wondering if you have noticed any side effects from it or how it's helped you so far?
This is awesome you found an ent already familiar with ES! Frustrating to try meds and wait, but it's easier than surgery.
I get A Lot of confusion and disorientation as a symptom. I've been having trouble getting seen by people familiar with ES until now, so my doc this far only think that maybe it's related to the spikes in my neck. It can he brought on by turning my head, looking up and down tho, and isn't a terribly uncommon symptom of vascular ES. I understand your frustration too. I used to travel full time for my business, and now I haven't been able to drive for a year because turning my head gets me so dangerously confused. I lose track of a lot of things, get lost in my own house, and when it's real bad I have to read the same thing over and over because none of the words stuck in my head.
I hope this doc works out for you and you start feeling better soon.
Thank you! My doc confused me with the trigeminal neuralgia too. What you just said in your reply is totally me.I am going to print off some documents and take with me on my next appointment. If he won't listen to me then I will lock for a new doctor! I am thinking/feeling I have some compression of the jugular as well.
Thank you!!
Jules said:
I did have 'brain fog'- with the jugular compression caused by the styloids pressing both sides on the jugular veins it was causing Intracranial Hypertension, and it made me feel constantly like I was a bit tipsy and had to concentrate as hard as I could to follow conversations etc. I would have real blank moments too.... It has improved a lot with one side done so far. But to have compression of the blood vessels is rare, don't want to frighten anyone! Some medications can have that effect too.
BTW, ES can cause Trigeminal Neuralgia, so I'm not sure how your ENT is going to rule out ES causing your problems just by treating the nerve pain?!! (There are some documented cases if you need to show that to your ENT later down the road, there's details in the ES Info section)