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Hello jmb73. It did my heart good to know that somebody else has the same concern as I do. Although I’ve had constant migraine since 2013, almost 2 years ago a new pain began. It started with neck pain which I was told was arthritis. Then the back of my head started to hurt badly. It has become so sore that even resting it against the sofa cushion made it hurt more. One other symptom is that I feel like I am talking and hearing through a layer of liquid. Weird! I have a constant runny nose. It leaks! The pain is less when I lie down than when I stand or sit. Sometimes it is nearly unbearable.
My neurologist has tried Botox. It hasn’t really been successful. Later this month (19th) he is going to try nerve block. I don’t know what to expect, but I am so anxious to try it (or almost anything at this point!). If anyone has experience with nerve block, please share it.
I have an adenoma on the left side on the pituitary. It is benign and stable. I have had 2 surgeries on the left parotid gland for benign tumors.
If the nerve block does not work, the plan is to redo an MRI. The last one was a year ago. I have asked about the possibility of cerebral spinal fluid leakage, but the doctor does not think so.
Any input will be appreciated. Thanks
Replies to "Hello jmb73. It did my heart good to know that somebody else has the same concern..."
I meant to ask you how long you tried botox? I had my doubts about it at first mainly because I wasn't being patient enough. It took me 3 rounds of 40 injections which can only be given every 3 months. My head is a mixed bag between migraine and neuropathy and I now know that I count down the days in the final month when I'm due again for botox. Maybe it just didnt work for you as not everything works for everyone. I have found success with Emgality monthly migraine self injections (after Aimovig failed me) and Cambia which is an abortive powder packet that is mixed with 3 tablespoons of water upon migraine onset. I'm really sorry to hear of your struggles. Migraine is one of the most debilitating states to be in and I feel for you.
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Hello. I have experience with greater and lesser occipital nerve blocks which were stepping stones to radio frequency ablations in both areas. I suffered from similar back of head pain which prevented me from laying my head against a pillow. I spent many nights upright in a recliner and with pain medication to eventually be able to gently rest my head against ice pads. Neck pain and headaches too. MRI of neck showed bulging and herniated discs but 3 spine surgeons said no major problems requiring surgery. MRI of brain was normal. EMG and nerve conduction studies were fine. My pain management doc diagnosed me with cervical spondylosis and occipital neuralgia. Drs didnt understand why I had such pain so they suggested nerve blocks to see if they provided relief and if so, on to RFA. I did this for 2+ years. Initially I found relief then slowly it became less and less with each procedure. When I became frustrated with a neuritis bout, terrible pain and burningand less relief, I pursued a 2nd neurologist who finally diagnosed chronic migraine then a year later small fiber poly neuropathy. I also had a spinal tap to determine if there were any auto immune diseases present. Migraines are tricky because they encompass neck too and can take shape differently for people. In my case I had multiple diagnosis which can get so confusing to decipher what's doing what. The best thing you can do is process of elimination which is exhausting in and of itself. I would keep pursuing with Drs, 2nd opinions, medical research, asking questions in forums and keeping daily journals of your health problems. I wish you all the best and hope you find relief and more importantly answers.
Rachel