Howard's Journey
On 28 June 2011, I was working that night. Around 6PM I started getting a little bit of a headache. I took a drink of water and continued working. At 6:30 I had my attack. It felt like someone was pounding a large stake in my left eye with a sledgehammer, a stake on the top of my head, and an icepick in my left ear.
For the next several months I went from my general practitioner to neurologists to Mayo Clinic in MN. I was on several medications, carbamazepine, fentanyl, baclofen, citalopram, zanax, hydromorphone, pregablin, gabapentin, and a few others. Several of these drugs I had bad reactions to. I was always dizzy and had broken a big toe and an ankle. (two different times) Mayo had given me an initial diagnosis of Atypical Trigeminal Neuralgia and told me I was not a candidate for any surgery.
I was finally able to get into the University of Iowa Hospitals and Clinics in Iowa City, Iowa. I went to the headache pain clinic and they asked if I wanted to be a "guinea pig". I signed a release form and from there we tried many different procedures including lidocaine nerve blocks, new drugs, accupressure, etc. They also did a targeted MRI which found that I extensive damage from behind my left eye to the brain stem. This is not 100% for sure, but my GP and U of I think it was a possibility that I had shingles inside the head which caused the damage. I had no skin rash. There are known incidents of this happening in other parts of the body.
The U of Iowa pain management doctor and neurosurgeon, both said I have ATN, Hemicrania Continua, ON, AFP, and just about any other neuralgia up there. With that and knowing the nerve blocks worked for only two days, we decided to see if electrostimulation would work. I went for the trial and it worked! I had a permanent stim implanted on 17 April 2013. It works well for the ATN, which was the worst of the pain. The stim does not cover the ON or Hemicrania Continua.
My ATN is on the left, my ON is bilateral, the Hemicrania is all over. I am off of any daily pain medications. I do take meds for depression and anxiety. I do occasionally take baclofen, indomethacin, or hydrocodone for breakthrough pain.
I am a group admin for three Facebook groups: TN, ATN, ON Sufferers Group, TN Advocates, and TN Exposed "Our Story". Please come visit these groups and become members.
Find people with Occipital Neuralgia through the map. Connect with them and share experiences. Join the Occipital Neuralgia community.