It's been a while since I posted, but I wanted to update ppl with my latest. Background: I was originally diagnosed in 2010 with chronic daily migranes, but was re-diagnosed with NDPH (New Daily Persistent Headache) a few years later. I have seen every healthcare provider under the sun, and my neurologist has finally exhausted treatment options. The last "hail mary" path we investigated was whether I had a cerebrospinal fluid leak. Given that I get a little bit of relief from lying down, my neurologist thought we should check. If it was a CSF leak, there is a specific treatment for it, and only that treatment will resolve it. So the diagnostic test was a CT-guided myelogram. I was not prepared for this procedure by anyone, and I hope my experience will help someone else.
The radiologist set me up on the CT scan and got some baseline scans. Then he essentially performed a spinal tap (aka lumbar puncture), checked the pressure of my spinal fluid and injected the dye. I had to roll over a few times to get the dye all the way around my spine, and then they inverted the table (allegedly 10 degrees) to get the dye all the way up to my brain. Doc said, "Some people experience a bit of a headache when the dye reaches their brain." Ok, but what about the headache I already have? Well, what he should have said was, "You will experience skull exploding pain in about 5 seconds." I was in tears. It was by far the worst pain I'd ever been in. After that, I laid down on my back for a regular scan and I had to hold my breath at certain intervals. Then it was back to the recovery room where I was not offered ANY pain meds, but I was able to convince them to give me some ice packs which I used on my head. I hung out for a bit until the radiologist had reviewed my scans. No CSF leak was visible, but that didn't mean it wasn't there. Doc said he'd still recommend the fix, which is an epidural blood patch, since I have been suffering for 9 years. (short version: A blood patch is where they inject your own blood into the area around where the CSF leak is located and your blood plugs the hole.) After delivering the info, the doctor let me drive home. My pain level had decreased enough for me to drive, so I got lunch and started the hour-long trek. For the last 10 minutes of my drive, I was back to that skull shattering pain. I almost had to pull over, but pushed through it so I could just get into bed. Seven (7) days of complete bed rest followed a procedure that was advertised as "no recovery time required."
The problem was that the procedure that checked for a CSF leak actually CAUSED a CSF leak. Doc said it was rare, but that it happens. He said it should resolve itself in 2-3 days. (Yeah, right.) Later he said the average recovery time was a week. (BIG difference, doc!) The difference in pain from when I was standing to when I was lying down was immediate and drastic. I had no less than level 6 pain when lying flat, level 8 when slightly inclined on pillows and immediately back to that skull exploding 10 when I had to get up to use the restroom or attempt to eat dinner. I lasted about 5 minutes at the dinner table before I had to go back to bed. Thankfully, I had family to help me, but if I hadn't, the dog and I would have been in very bad shape. Ultimately the small leak caused by the procedure did resolve itself without having to perform a blood patch, and the doctor said the myelogram was a good diagnostic experience. Based on my experience post-procedure, he's fairly certain that I did not have a CSF leak beforehand.
Now, we are back to the shoulder shrugging. No one knows how to help me. None of the drugs, including Aimovig, have helped, but I'm going to go back to the chronic pain clinic to see if there have been any new ideas in the 6 years since I last consulted them.