I have been living with migraines for over 20 years now. Up until I was hit head on by a man who ran a red light they were only occasional and were managed with Excedrin Migraine or the occasional Relpax. After that, they began to increase in both severity and frequency and became chronic (15 or more a month) and have stayed chronic and daily at times for 16 years.
Because 1 in 10 suffer from migraines, 3.3 million with chronic migraines & since I've tried everything (from natural remedies to surgery), I wanted to share my experience with the treatments I've tried in hopes of helping someone else who is suffering &/ or trying to decide what option is best for your treatment.
Of course I'm not a Dr, so that decision is up to you and your physician. But maybe you'll get some insight into what you feel may be worth considering.
Total I have been under the care of 7 different Neurologists. Four of which were headache specialists, and the rest were very experienced in treating migraines.
It all started with my diagnosis at the age of 18. I didn't want to have to take any prescriptions so I took the natural route. I tried every supplement under the sun, chiropractic, acupuncture, acupressure, headache diaries, eliminating foods and other known triggers. But they only continued to get worse.
Below is the entirety of all I've tried and whether or not they helped me. Since everyone is different and what works for one may not work for others, I'm not saying any of these things are good or bad. Just sharing my own personal response to these interventions.
I first started with natural measures, or treatments that did not involve prescriptions. I was hopeful at that time that I could possibly get these monsters in check the natural way, and some of these things did and do still help me. Unfortunately none of them have completely taken migraines away for me.
ALTERNATIVE/NATURAL/HERB/SUPPLEMENTS:
-Chiropractic: NO
-Acupressure: NO
-Acupuncture:NO
-Hydration: YES
-Caffeine in moderation: YES
-Sleep: YES
-Rest & Relax: YES
-Elimination diets: YES
-Migralief: SOME
-Migrafew: SOME
-Magnesium: NO
-Counseling: HELPED TO COPE
-Exercise: NO
-Yoga:NO
-Daith piercing:NO
-Massage: YES
-Headache hat: YES (https://amzn.to/2YHq59o)
-Eye mask/Dark: YES
-Noise cancelling headphones/Quiet: YES
-Essential oils: SOME (https://amzn.to/2YIbDy9)
-Fish oil: NO
-Hormones: YES
-Breast implant removal: NO
-Elimination diet based off my known sensitivities: YES
-Keto diet: NO
-Butterbur: NO
-Vitamin B2: NO
-Co-Enzyme Q10: NO
-Feverfew: NO
-Melatonin: 3mg a night: NO
-Fish oil: NO
-B complex: NO
-Alpha Lipoic Acid: NO
*Next were the introduction of the medications. This included prophylactics, abortives, anti-emetics, & pain relief
Medications:
PROPHYLACTICS:
-Birth Control: NO
-Topamax: SOME (but because of kidney stones, not an option for me)
- Amitryptyline: NO
- Nortriptyline: NO
- Propranolol: NO
- Gabapentin: NO
- Cymbalta NO
- Lyrica: YES (couldn't stay on due to side effects)
- Namenda: YES
- Cymbalta:NO
- Gabapentin: NO
- Lisinopril: NO
- Propranolol: NO
- Verampamil: NO
- Periactin: NO
- Doxepin:NO
- Effexor: NO
- Migrelief: SOME https://amzn.to/2Kbc286
- Migravent: SOME https://amzn.to/2yALvu9
- Migraine Stop: SOME https://amzn.to/2YEnFMF
ABORTIVES/ RELIEF
-Tylenol: NO
-NSAIDS:NO
-Excedrin Migraine: YES
-Relpax: YES
-Frova: YES
-Maxalt: YES
-Zomig: YES
-Cambia: YES
-Midrin: YES
-Imitrex: oral and injection form: NO
-Treximet: SOME
-Naratriptan: CARDIAC SIDE EFFECTS
-Migranol: NO
-Midrin: YES
-Stadol nasal spray =YES but too many side effects
-Fiorcet: YES
-Morphine:SOME
-Nucynta: SOME
-Oxycodone: YES
-Oxycontin: YES
-Fentanyl: YES
-Norco: YES
-Demerol: YES
-Percocet:YES
-Tramadol: NO
-Tizanidine: YES
-Baclofen: NO
-Meloxican: YES
-Zomig: YES
-Phenergran: YES
-Compazine: NO
-Flexeril: NO
-Vistaril: NO
-Benadryl: SOME
Blocks were the next step.
My neurologist at that time, tried many different types. He suggested that I need to go off all medications. He thought I had rebound headache from medication. I did that for several months as suggested. Unfortunately, all that did was keep me in constant,unrelieved pain. My kids were toddlers and I was working full time so it was not a good time to say the least.
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| CERVICAL SPINE BLOCK |
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| C |
Next up was treating my TMJ/TMD to see how much of that was contributing to my migraines... I had a custom made oral appliance that I was to wear at night due to my grinding and in the daytime during activities where I was prone to clenching. I also had a therapy called vapocoolant spray and stretch to try and reduce trigger points in my right Sternocleidomastoid and Trapezius muscles. I still wear a mouthpiece and have since found a much more affordable option for a professionally made mouthguard that I have had better results and is 1/4 of what I paid for the first one! You can find it here https://amzn.to/2YEdFiL
Around this time, I sought out the help of a Neurologist at a headache clinic out of state for patient trial that was to hopefully bring out the next state of the art treatment. Unfortunately because of my other health issues I was not a candidate. Thankfully though, this is when Botox came on the scene. I had to travel out of state to find a Dr who was performing these injections. Of course that didn't matter one bit. The first round was great! I got relief! Unfortunately all subsequent rounds thereafter were not helpful...
So next came more meds for the next 2 years. That's when a cutting edge surgery became available for intractable chronic migraines. The neurostimulator became available for severe headache conditions. I underwent the trial which was positive and was approved for permanent implant! I had my first neurostimulator placed in 2013. It was like a miracle! I was able to return to work & lead a somewhat normal life. I was getting REAL relief. It didn't take away all my symptoms, but it enabled me to have a quality of life I had been missing for so long. Unfortunately though the leads migrated after about 6 months and even after complete revision it never helped again despite several attempts at reprogramming. My Dr's didn't know why it just stopped working. But there is some speculation that the nerves become tolerant of the stimulation and don't receive the same amount of relief they once did.
When I had my trial, which is done externally that was the most relief I had the whole process. As time went on the relief stopped and then actually began making my symptoms worse so I turned it off and still haven't turned it back on. I plan on having it removed when my conditions steady out a bit.
Neurologist #6 tried more Botox in 2015 and when that failed he told me there was nothing more could be done and my next hope was CGRP monoclonal antibodies. But they were to be at least 3 years away. I was so discouraged. If not for a good pain management regimen I'd have been in excruciating pain 24/7.
I did find a procedure called SPG block that was supposed to be life changing. For me it was not unfortunately, but it certainly could be and is for many others suffering with migraines.
Currently, I'm seeing my 7th Neurologist. She's a headache specialist and has me on the CGRP Monoclonal Antibodies, Namenda, Nadol, Frova, Zomig, and Phenergran and of course in my mouth guard at night. The Aimovig doesn't seem to be helping as effectively as it should after a year so we are switching to Emgality. Which I'm hoping is just what I need.
One important thing to note in my case is that my migraines, or at least most of them are triggered by my AAI/CCI, TMJ/TMD, Occipital Neuralgia, and nerve root compression. Therefore I don't respond as well as someone without those structural issues might. So I hope my experience doesn't come across as negatively. There are new advances all the time and so much hope in this area I personally believe.
Blocks/injections:
A trigger point injection is a procedure where a medication, usually a local anesthetic, is injected into the painful muscle to provide relief. The pain relief should be experienced not only in the affected muscle, but in the area of referred pain as well.
BOTOX: YES
SPG block: NO
“Administration of lidocaine to the sphenopalatine ganglion acts as a ‘reset button’ for the brain’s migraine circuitry,” said Kenneth Mandato, MD, the study’s lead researcher and an interventional radiologist at Albany Medical Center. “When the initial numbing of the lidocaine wears off, the migraine trigger seems to no longer have the maximum effect that it once did. Some patients have reported immediate relief and are making fewer trips to the hospital for emergency headache medicine.”
SURGERY: YES but short lived
4 lead neurostimulator:
The Dr implants a small device at the base of the skull with leads connected to a power source(pulse generator) that sends electrical impulses to the nerves. The gentle vibrations provide relief to the nerves. The pulse generator is often implanted under the collarbone but can also be implanted in the abdominal, lower back & buttock area.
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| image of neurostimulator |
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| My first neurostimulator surgery |
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| My occipital leads incision |
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| Power source implant first surgery |
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| Front supraorbital lead right side incision |
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| my rock |
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| Power source moved to chest with revision |
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| incision for right supraorbital lead |
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| where my leads are bundled |
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| How my face looked while I had stim on. |
OTHER:
-TMJ/TMD therapies including custom mouthpiece & vapo-coolant spray and stretch treatments. SOME
MYOFASCIAL RELEASE: NO
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| At home therapy with the Thera Cane |
-DHE infusion & injection:no
-Progesterone: some
-Estrogen: some-Testosterone: some
-DHEA: no
As I mentioned before, when these migraines became chronic and then eventually daily, or so we thought, I had not yet been properly diagnosed with Craniocervical Instability, Atlantoaxial Instability, nerve root compression or Occipital Neuralgia. Now we know that those underlying causes trigger most if not all of my migraines. Had we known that we may have avoided many of these options, especially the surgery!
I do not regret giving any of these things a try! I do wish the neurostimulator would have worked the 2nd time around but I knew that lead migration was a risk going in to that surgery.
Migraines are just a terrible beast that are devastatingly disabling. I assume that if you're reading this, you or someone you know suffers with them. I do hope you are able to get the very best help and most effective treatment and are able to have the best quality of life possible. It is encouraging to see the new advances and discoveries being made so often. Hopefully as more and more awareness is raised and more research is done this will only keep improving! Until then hang in there, you are most definitely not alone!
