Finding My Migraine Puzzle Pieces
I was officially diagnosed with migraine about 18 years ago, but believe I have been suffering since I was a teen. Just thought I had bad sinus headaches. I was episodic for many years and migraine did not really impact my life. I called myself a highly functional migraineur! That began to change about four years ago. I slowly crept from episodic to chronic and then to daily.
I discovered my first migraine puzzle piece in 2015. I even wrote an article for Migraine.com about it. I mentioned in my article that I hoped I didn’t jinx myself-well, I guess I did! If I jinx myself again after this article, I’m never writing again!!
My first puzzle piece was being diagnosed with sleep apnea in the Spring of 2015. I started sleeping with a CPAP and it really made a difference. (Note: I now use a sleep apnea mouthguard made by my ENT who is also a dentist. Much easier than wearing an octopus on my face every night!).
My second puzzle piece actually relates to my first piece. The way I was sleeping-on my back-while wearing the CPAP, ended up exacerbating an issue going on in my neck that I did not know about. I had degenerative disc disease that caused spinal stenosis. When we discovered this with a neck MRI, my neurologist said I was probably experiencing cervicogenic headache that I thought was migraine, along with the migraines I was having. So, in June of 2016, I had ACDF surgery (anterior cervical discectomy and fusion) on vertebrae’s 4/5, 5/6. The recovery from this surgery is tough, because it actually causes more headaches! I then found myself in MOH (medication overuse headache aka rebound headaches).
My third puzzle piece was to get off the MOH carousel. I spent 5 inpatient days at the Jefferson Headache Center in Philadelphia where they pumped me up with all sorts of drugs, (I think I was probably glowing in the dark!) but most importantly, IV lidocaine. It took exactly 24 hours for me to become pain free. The experience was much tougher on my body than I expected. They had me on Cymbalta for two months prior to my inpatient stay so it took about 45 days when I got home, to totally detox from everything I had been on or had coursing through my veins! That took me into early 2017. I became episodic again with an average of about 10 migraines per month. I was happy with this and feeling really good. I rejoined Weight Watchers and have now lost over 30 pounds (maybe the weight loss will be an unknown puzzle piece?). My outlook was certainly better. When you are in chronic pain EVERY day, for two years, it is good to feel good! Unfortunately, or I should say, fortunately, my story doesn’t end here. I slowly became chronic again as the year went on. Then, at the end of January this year, 2018, I began what would be a 50 day migraine. I hit a very low point emotionally, because I thought I had fixed myself with finding these three puzzle pieces.
That brings me to the present and my fourth, perhaps most important puzzle piece. SphenoCath. This is a procedure that inserts a catheter up your nose, deep into your nasal cavity where lidocaine is then delivered to your SPG nerve (Sphenopalatine Ganglion). I have known about this procedure for a couple of years, but could only find it being done in chiropractor’s offices. My neurologist said no way! So, during my 50 day migraine, with my nose back to the research grindstone, I found the procedure being done by an Interventional Radiologist. A doctor that works on varicose veins and uterine fibroids. I found a fabulous doctor and I go to his out-patient treatment center for the procedure where he uses x-ray guidance and contrast to see where he is placing the catheter. (This is why a chiropractor’s office, or even a neurologist’s office are not ideal. They would be going in “blind” without the x-ray and contrast). It all takes about 20 minutes and I drive myself. When I say that this has been life changing, I am not exaggerating. I am 60 days out from my first treatment and I have had 2 migraine days. TWO MIGRAINE DAYS!!!
Let me digress for a moment. For the SphenoCath procedure, they want you to get three treatments at the beginning and they are two weeks apart. I am now over 4 weeks from my last treatment. The doctor has scheduled a “maintenance” treatment for August, but if I feel like I’m falling back into the migraine rabbit hole, I can go sooner. It’s JUST lidocaine, so you can get it as often as you need it. The way I understand it, is that the SPG and the Trigeminal Nerve start to learn how to only fire their pain cylinders. The lidocaine gets in there and settles things down. It “reboots” the circuit.
I am feeling the best I have felt in years. I haven’t gone so many days without a migraine in ten years! It has actually been a strange adjustment to feeling good when you keep feeling like the other shoe is going to drop! If the other shoe finds it’s way out, I will just go earlier to get another treatment!
In closing, I want to say that I do not take any daily preventatives. My pain-free status right now is all because of this treatment. Don’t give up researching to find YOUR migraine puzzle pieces. It is a very slow process, but hang in there and be your own best advocate!