Hi

Thank you for your post.

I have an AVM. I was born with this, and it was first found in an MRI 13 years ago. While testing for my symptoms of facial pain (Neuralgia - They didn't know it at the time) 2-1/2 years ago, I had another MRI. These results were compared to the MRI from 13 years ago, and they found that the AVM had grown from 2cm to 2.3cm x 1.2 cm, and had hemorrhaged.(I had an event 3 years ago when this happened, and a small stroke). I was alone and confused when it happened. I got severe spins and puked like I was drunk, and it happened suddenly. It was really scary. I fell asleep for an unknown amount of time and half my face sagged for a week. I was also very slow for the first week.

I have 2 conditions that I have been dealing with, and am on medication for

1. Arteriovenous Malformation (AVM)

2. Glossopharyngeal Neuralgia

I have read that the AVM can provoke Neuralgia. I do not know if that is the case for me or not.

I am on 150mg of Lyrica (pregabalin) 2 x daily for the Neuralgia pain.

I am on 5 mg Imipramamine 1 x daily, for the head pains associated with having this mass in my head.

Both meds are very strong. If I forget to take a dose, I can suffer for 2 to 3 days with something similar in feeling to a hang over.

I have seen a neuro surgeon, and I was told there is 100% risk of complication if surgery is performed for either (both) conditions. I still see my neurologist on a regular basis, and saw him a week ago, last.

I've been on these meds for approx 2-1/2 years. They were hard to get used to, and did make the pain far less than it would be without. I've been asking for 2 years to get off of the drugs, and have tried acupuncture, as well as a bad, expensive experience with a quack that did electro-acupuncture, and prescribed Borax, Iodine, Magnesium, and something he called Remedy (water in a bottle the he says he agitated to a particular frequency)

I'm a 53 year old, male professional, with 37 years in my profession. I'm struggling with the symptoms of the conditions, and the side effects of the meds, and it seems to be getting worse, creating a higher dependency on the drugs I want to get off. It's a horrible, vicious circle.

My memory and my vision have been dramatically affected, and are getting worse. I'm now recognizing episodes of behavioral, and emotional problems. I feel as if I am losing my sanity at times.

My neurologist, who cannot think of any alternative treatment for me, wanted to refer me to someone who could administer stronger drugs. I expressed that I so not want to do that, as I have been trying to get off of medications.

I feel that it is becoming increasingly difficult to perform my job as a professional. My personal life has been heavily impacted. I have no social life, and have lost my ability to live normally. I alerted both of my now adult, kids 2 nights ago of where I'm at today, explaining everything, and indicating that I need help and that I am reaching out for that help now, to them.

As my conditions and the dependency on the meds worsen, I am seeking urgently needed support and help to try to regain the ability to live life normally.

Thank you

Ed