+ Read Scott's Story

For 30 years I worked helping the poor and hurting around the world. Ten exciting years serving overseas, until chronic migraine led to discovery of a weak and expanding blood vessel in my brain. I worked at home 10 more years.

Then, in 2008 my life changed in one day. Brain surgery went wrong, I had a stroke, and became "disabled" with Central Post-Stroke Pain (Central Pain Syndrome). That was a difficult result for me. But burning in over half my body is real! I was in excruciating and intractable pain 24/7.

After ten years of severe migraines, brain surgery and stroke, and many years of burning, I decided to take my illness as my own responsibility, not my good doctors. Doctors are needed, but they are consultants, we manage every day.

Since Father's Day 2015 I've battled for my body, swimming 3 times a week, along with stretching, breathing, meditation, and physical therapy. Every way I can win I'll take. The battle in my mind caused by my stroke is another real challenge. My stroke has caused bipolar symptoms as well. But we are winning!

I was looking online for answers ten years ago and I found a "Central Pain Syndrome" Yahoo! discussion group. I read without writing, then began to contribute. I felt like I was not forgotten for the first time in many months. For ten years, now at Facebook, I have been encouraged, and have encouraged others.

When I decided to lead the Central Pain Syndrome Foundation (CPSF), I found a way to keep helping those who are hurting! That is the passion of my life. Because of CPSF, we are never alone!

+ Read Kelsey's Story

In 2008 I proved that anyone can fall off a horse and get CPS. I was practicing jumping without stirrups when my horse got excited and gave a little happy buck at the exact same time that I was landing on his back after the jump. He tried very hard to avoid stepping on me but did run over me while cantering, accidentally kicking my head below my helmet, causing a concussion.

Then I went to sit and rest on a fence but before I made it, I had gone unconscious and walked straight into the fence, bouncing off of it and clearly making for a quite comical dinner table discussion. Only unconscious for a few minutes, I really never thought very much of this event afterwords. None of the doctors I saw later on had, “did you hit your head and black out?” on their questionnaire, so I never thought to mention it. The concussion in turn caused tingling, some numbness, muscle tension and pain, and breathing issues about five years later.

I also had an upper spinal cord injury in gymnastics as a kid and a mid / lower spinal cord injury before the concussion from a skiing accident, but since I was so athletic I never thought anything of these events until I had breathing "spinal lock ups" years later.

In 2009 I got the swine flu, and then stung by a nasty “mustache” (puss) caterpillar (flannel moth) while I had the swine flu. I never paired the concussion with the onset of my spine pain and constant pain that seemed to plague the back of my head, neck and shoulders after that run in with the caterpillar until I began digging deep into my memory to figure out my case of CPS. Then, it wasn't until a series of unfortunate injuries ensued after the concussion that I began to realize my pain wasn't normal.

So after a torn muscle in my back and a sprained ankle in 2012, both knees and hips strained and traumatic wisdom teeth surgery in 2014, another crazy virus in 2015 and an infected cat bite to my writing hand in 2017, I had compounded quite the list of pained spots on my body that just never seemed to heal.

Several doctors believed me to have Fibromyalgia (which I now know is a common misdiagnosis for CPS) or some yet undiscovered auto immune disorder, but once I understood Central Pain Syndrome as it relates to even “non-traumatic” head injuries (minor concussions, whiplash, falling down stairs and blacking out...), it felt like the puzzle finally fit together.

I discovered Dr. Forest Tennant on YouTube in 2016 and found that his hormone protocol of Oxytocin and hCG was helping to restore the nervous system of some EDS and CPS patients so I was eager to try it. Finding a doctor willing to use hormones to treat pain was extremely difficult, but I made it my daily pursuit and in 2017 I finally found a doctor who was already using hCG for Parkinson's patients. This hormone protocol has been changing everything.

I used to get these intense spine episodes where the only way I could breathe was by hyperventilating. The only way I have been able to describe these episodes is as though someone reached into my mid spine from behind me and was squeezing it, trying to snap it. The hCG resolved these episodes, but it took eight months of being on it. The Oxytocin has been an incredible pain reducer.

Now, in addition to these hormones, I’m using Frequency Specific Microcurrent to treat and heal the pain and so far, in two years of daily treatments, I went from "I can't think" kind of 7-9/10 daily pain to "this is annoying" 2-4/10 daily pain. This reduction happened after just 3 months of regular FSM treatments. I continue to treat with it everyday because I have many layers of pain to treat.

In addition to the strange spinal cord episodes, one unexpected effect of the concussion was a massive reduction in brain functionality starting likely right after the concussion. It became evident by 2014 when I didn't remember having told certain people certain things and was beginning to have major gaps in my short and long term memory. This isn't normal for a 20 something year old.

This is one thing that hCG heals in the brain, and after three years of being on this hormone, it has brought my brain functionality back to what it was around the time of the consussion. I expect it'll take at least 7 years of being on this hormone protocol to reverse the effects of CPS completely.

I tried Cymbalta, methylprednisilone and meloxicam, all of which which made me way worse, but I was on each for 1-3 years and didn’t know how much worse they were making me until I got off of them. I tried B shots which hurt like bee stings and didn't seem to do anything for me. Thanks to CPS and the way it plays pain on loop, I still have pain in my legs from those B shots when I did them in 2017.

This is why we need to be careful about what we try to treat the pain with when we have CPS, because anything invasive can make it way worse. I also used a topical ketamine compound for 4.5 years which I highly don't recommend, as coming off of it took 2 solid years, cost me in months of devastating withdrawal and resulted in a memory wipe.

However, other medicines / supplements helping me have quality of life now are Amantadine (100mg), Low Dose Naltrexone (4.5mg), low Dose Lithium (20mg - from supplement store), Trazodone (200mg), Singulair (10mg 3x daily: this is known to have a side effect that stops glial cell activation) and an array of supplements including B Complex, Rhodiola, DHA, Vitamin D, DHA, Memory Builder, the best multivitamin there is and CoQ10.

Most everyone thinks I am completely healthy because I look capable, I am a professional photographer and dog behaviorist, and I seem (mostly) "with it". But in reality I have been 50-90% bed ridden for almost a decade with extremely devastating pain everywhere I have injured myself after the concussion and throughout my CNS. I pushed through college, but my entire system collapsed shortly thereafter when I was inadvertently drugged in 2011. This started me on my path to getting diagnosed.

Two key elements to my healing have been reading Dr. Caroline Leaf's book "Switch On Your Brain" and looking for doctors in the "natural, holistic, integrative, or alternative" sphere of medicine, completely outside of insurance, who are also well rounded MDs and DOs.

I am so grateful that I discovered Dr. Tennant and his protocol, along with a local doctor who started me on FSM. I believe strongly in the hormone protocol of Dr. Tennant and in FSM, and I'm doing everything I know to help others try these protocols in hopes that their pain will reduce or reverse, too.

My life has been dramatically improved since starting these two main treatment routes in 2017. I made a video (watch here) with more in depth information about the treatment routes I have chosen (Dr. Tennant hormone protocol and FSM) with hopes to help others become aware of these protocols and try them.

+ Read About Dr. McMakin

Carolyn McMakin, DC developed Frequency Specific Microcurrent (FSM) in 1996 and began teaching it in 1997. She has a part-time practice, does clinical research and teaches FSM seminars in the US and abroad. She has lectured at the National Institutes of Health and at conferences on fibromyalgia and chronic pain in the US, Australia, England, Kuwait, Taiwan, Italy and Germany. Elsevier published her textbook, “Frequency Specific Microcurrent in Pain Management” in 2010. Her book, “The Resonance Effect; How Frequency Specific Microcurrent is changing medicine” was published by North Atlantic Books in 2017.