I began having migraines in 1995. I was working as a tax manager in a stressful corporate environment and decided to quit in 1996 because at that point I was having “tension headaches” every day and migraines frequently. However, even with less stress my migraines got worse and became daily. Of course I began seeing headache specialists in the San Francisco Bay Area, but they all said the same thing, that they didn’t know why I was having daily migraines.
Unless you have had a migraine you can’t understand how it feels. On a pain scale of 1 to 10 (10 being the worst), my normal day would be between a 4 and 6. I went for almost 15 years without knowing what it felt like not to have a migraine. I missed many fun events with family and friends and got to the point that scheduling something was impossible.
When the pain got to a 7 or greater I went to the emergency room to bring the pain back down to my normal level, 4-6. I would try anything a doctor recommended out of desperation. I became severely depressed from the pain, constant vomiting and living in a dark room every day. I tried all types of medications (abortive and preventative), Botox (before and after FDA approval), nerve block, in-patient hospital stays for DHE (2 times for 5 nights each time), alternative medicine, various diets, nutritional supplements, Chinese medicine, massage, chiropractic, bio-feedback, and a Cefaly device I purchased from Canada before it was FDA approved.
I lived on pain and nausea meds for a long time, but nothing helped the unimaginable pain keeping me bed. I won’t even get into the horrifying side effects from medications I’ve experienced. After all this nothing helped, but I kept reading more books about migraines and treatments and doing research on the internet. I would always say that if I could just chop my head off I would be fine.
Thankfully, in early 2013 I learned about neuro-stimulator implants at a Texas migraine center. I flew there for a seminar, came back for a one week trial and had the permanent implant put in July 18, 2013. I paid out of pocket for this since my insurance would not cover it because they consider it experimental. It was worth every penny! It’s not a cure but a way to manage my daily migraine pain.
I got my life back! At least I thought I had.
Late 2013 to 2014
Once the constant pain in my head was gone the rest of my body starting hurting. The burning pain started in my calves and moved to my arms, and within a year my entire body was burning. My arms, elbows, palms, hands, fingers, legs, calves, hamstrings, toes and top and bottom of my feet burned 24/7. I felt like my body was on fire. I also had constant tremors. I would wake every morning shaking at level 9/10 pain and have to get up and take a pain pill and go back to bed to wait for it to kick in. Most mornings the tears rolled down my face as I waited out the hour. This was the migraine nightmare all over again.
Late 2014 to 2015
Once again I was seeking help from the medical community. Of course I started with my primary care physician and then to a Rheumatologist. I was told I had Fibromyalgia, but once I started reading about Fibromyalgia I could not accept that as the answer so I asked the Rheumatologist about Lyme Disease. She asked if I remembered getting bit by a tick and I said “No, I don’t remember”, so she said NO you don’t have it. The Rheumatologist even lied to me about refilling my pain meds. She said she was refilling them and didn’t. I wrote her a very pleasant email thanking them for ruining my weekend, and months later wrote her an email telling her to get educated about Lyme Disease.
Then I was referred to a pain doctor. At least I thought he was a pain doctor and to this day I’m really not sure what type of doctor he was. The “pain doctor” diagnosed me with an L5 pinched nerve. Really? Why would my arms hurt? He said that my arms hurt from repetitive stress injury. He diagnosed me before examining me. I let him do his wacky exam and he told me I was weaker than his 90 year old patients and that this was “easy peasy” and all I needed was physical therapy. I didn’t agree with anything he said. So at that point I went back to my primary care doctor who didn’t agree with his diagnosis either.
After my implant I started going off all my psychiatric medications because I wasn’t depressed and didn’t want to be taking drugs that I didn’t need. So I went to an appointment with my psychiatrist. I was sobbing in her office and showed up late because I could barely walk from the crippling pain. I told her about the pain and the Rheumatologist not refilling my pain meds. She looked directly at me and said “You need a mood stabilizer”. F*** YOU was what I was thinking, but I said NO I do not. She said it was my choice and that she had another patient waiting so my time was up.
She gave me a book to take and read for me to understand why I was still depressed. WTH? I WAS NOT DEPRESSED! I was in pain. I did email her later when I found out I had Lyme Disease and told her to get educated on it too. I did not have any of the “labels” she gave me. I also emailed the “pain doctor” to tell him he was wrong and to please get educated about Lyme Disease. The wacky “pain doctor” actually thanked me for letting him know.
So about August 2015 I decided I needed to take charge of my health and find different doctors outside of my medical group. Luckily for me I found an awesome pain specialist in my hometown and he was familiar with stimulators. He disagreed with all the other diagnoses and said he would help me figure out what was going on. He could only say I had upper and lower body bilateral pain. Yay! Finally! Someone who listened to me and didn’t just give a diagnosis and send me on my way. He was supportive in giving me the pain meds I needed to function and I signed an agreement with him about taking opioids and did a drug test right then. I don’t mind doing a drug test because I agreed not to take other drugs and that proves I don’t. He also had no problem with me using medical marijuana.
By September 2015, I had gone thru many tests and a horrific nerve test (EMG) so during the next visit to my pain doctor I asked about Lyme Disease. He said that was one of his next thoughts and he wanted me to see a Lyme literate MD (LLMD) in San Francisco and another neurologist for something else over an hour from my house. I agreed.
On October 1, 2015, I went to the neurologist. He was very thorough and I initially liked him until he said I DID NOT need to see a Lyme Doctor. He thought I had Thoracic Outlet Syndrome (TOS). I thought that could be true and let him tape up my back to keep me in a certain position for my blood to flow freely. But I never wanted to see him again because he was so certain I DID NOT have Lyme Disease. REALLY? GET EDUCATED!
On November 2, 2015, I decided to see a Naturopathic Doctor (ND) and start healing my body in a more natural way with a holistic approach. The ND deals with the cause of my chronic illness for 21 years. She looks at my test results and does some of her own and tailors my treatment plan accordingly. She is trying to get me better. We began with twice a week IV Ozone Therapy. The MD’s I’ve seen only wanted to give me a diagnosis and treat my symptoms. They never cared about WHY I was so sick and in so much pain.
On November 9, 2015, it was confirmed that I have Lyme Disease and the co-infection Babesiosis. In March 2016, I switched to a different LLMD closer to my house and have found out I have more co-infections, viral infections and candida.
September 2016, I continue to work with my Naturopath Doctor and will go back to the LLMD at some point. But I’ve been having some severe stomach problems so I need to have some more tests done at the Gastroenterologist.
I know I have a long road ahead of me to get rid of these infections, but I finally feel I have a good medical team supporting me. When I have those bad days where I feel like I might die, here are some of the things I keep telling myself to get through:
- I DON’T have migraine pain every day!
- I have a supportive husband that “gets it.” And after 21 years of my chronic pain I think he can feel it.
- I am thankful for my supportive family and friends who never doubt my pain or treatment methods and always offer to help me.
- I am thankful for my online community support and everything I learn from them.
- It WILL get better.
The path to health isn’t a straight road and even if I veer off for a bit I know I will get back on the right road eventually.