There are a few who know what things have been like for the last few years, even fewer with whom I've stayed in contact. So here's a little outline:
- March-ish, 2005 - started having strong headaches. Somehow they were different than any sinus or neck-generated headaches I'd had in the past. They came out of nowhere, and I couldn't find a pattern to their occurrence. Even worse, I couldn't find something that would "help" during a headache.
- Throughout 2005 - headaches became more frequent and stronger. Sometime in the fall, I started to get an unspecific feeling of "anxiety". It would just hit and I couldn't calm myself down. Reluctantly, I started an an anti-depressant for the first time. This seemed to help a bit with the anxiety.
- April, 2006 - hit with crushing depression. Anyone who knows me knows I'm an emotional gal. I feel deeply and express largely. Being depressed was not new to me, but this wave of disabling depression was. Some days I didn't leave my bed. In addition to the anxiety and the ever-increasing headpain, I was toast. I started stronger anti-depressants and later started counseling.
- August, 2006 - my headaches (individual, plural) gave way to constant headpain (no beginning or end, 24 x 7 x 365). I wasn't responding to "migraine" medications (Triptans, anti-seizure meds, blood pressure meds). At this point, I was still seeking treatment through my general practitioner and psychiatrist. The only thing giving me partial relief was the minor pain med being prescribed by my GP (Fioricet). Fogginess and difficulty finding words accompanied my headpain.
- Fall, 2007 - saw a neurologist for the first time. He sent me for my first MRI and started me on the "wait and see, trial and error" program of migraine medications. MRI = normal. Migraine meds = ineffective.
- April, 2008 - began to see a chiropractor. Through a moving x-ray, he found I had "hypermobility" in my upper cervical vertebrae, probably caused by my failed 'hit approach inside a school bus to rile up the team before a tournament' in 1992. Visits to the chiropractor and his physical therapy staff unfortunately exacerbated the pain. After 6 weeks, I terminated treatment there.
- June, 2008 - due to my gender, age, and weight (yeah, this was a delightful conversation to have over and over with the male nurse practitioner at the neurologist's office), I had my first lumbar puncture to determine if I had a condition called "pseudotumor". Essentially, it's elevated cerebral spinal fluid (CSF) pressure, potentially caused by weight or other factors. They call it "pseudotumor" because your CSF reacts the same way it would as if a tumor/mass were pressing on your spine. My opening CSF reading was on the high edge of normal, but still considered normal. Surprisingly, I had four days of feeling "better" following the procedure--not great, not good, but better.
- September, 2008 - still unresponsive to medication of any kind and (to repeat) in year two of constant pain, my neurologist referred me to what he considered the best headpain clinic in the nation--MHNI - Michigan Headpain and Neurological Institute in Ann Arbor. I entered their inpatient program on September 26. Little did I know I would meet (hopefully) lifelong friends there and commiserate on several levels with others that had the same non-diagnoses and social stigmas that I had. We saw each other through multiple procedures (epidurals, nerve blocks, lumbar punctures, MRIs/MRVs, etc.) and numerous medications (generally pushed through IV to determine their effectiveness quickly). We each fell in love with our nurses and the lady who came to our bedside to obtain our meal requests each day. Due to my increasing count of pain-related absences from work, I was in an unpaid status and being reviewed by my employer for continued affiliation with the company while in the hospital. In between treatments, I was faxing things to them and on the phone with HR regarding how things stood with my employment. To pay my bills during this time, I cashed in my paid vacation.
- October, 2008 - after two weeks in the hospital, I was released to go home on October 11. Having had two more lumbar punctures (LPs), a facet block, a cervical epidural, and loads of a new anti-seizure med (Neurontin) and a diuretic (Lasix) to help lower the CSF, I felt well enough to drive home and return to work if my employer let me. Since I had experienced a few days of relief after each LP and with new meds, my diagnosis was IIH - Ideopathic Intracranial Hypertension (or pseudotumor). Within a couple days of being back home, the pain began to steadily increase. My employer was allowing me to continue my affiliation under an Americans with Disabilities Act (ADA) accommodation. To maintain this affiliation, I had to work for thirty consecutive workdays to reinstate my sick leave benefit (paid or unpaid); if unable to meet this requirement, I would be immediately terminated. On October 20, I returned to work. The pain continued to increase and soon was back to pre-hospital levels. I did manage to work the 30 days (and more), but came home crying most evenings and slept every possible chance I had. My return to work had brought me increased responsibility and increased time at work.
- November, 2008 - I began physical therapy. I stayed with this for 5-6 weeks, but each treatment (even including massage) increased my pain and left me physically and mentally weakened.
- January, 2009 - with no other arrows in our quiver, I went in for a fourth LP--desperate for pain relief and "assured" that this would at least give me 4-5 days of ease. Sadly, the opening CSF pressure was almost as low as my previous closing pressures had been. Laying on the table, needle inserted in my spinal sac, I almost cried as I heard the opening pressure--fully aware that my situation was no longer the same as before. The neuroradiologist (?) worked with my neurologist in Michigan to determine what to do. She took off as much fluid as she could get, lowering me into the lower part of the "normal" range. This gave me no relief at all and left me hopeless.
- February, 2009 - during a visit to MI, the anesthesiologist that performed my inpatient treatments gave me occipital nerve blocks (at the base of my head, where it meets my neck). This numbed the back of my head, but did not relieve the pain. At the behest of my MI neurologist, I began accupuncture back at home. I did this for 4 (?) weeks, pain increasing after each treatment. My accupuncturist was awesome and very compassionate, but for some reason, I just wasn't responding well.
- March, 2009 - at the direction of my MI neurologist, I approached the pain specialist associated with my accupuncturist to perform a second cervical epidural. He was able to get me in later that week--March 6. I had five days of lesser pain--I was ecstatic! Unfortunately, after 5 days, the pain came back in a huge wave. Since epidurals are often done in sets of 3 (over a span of time), the doctor decided to try again--this time in combination with median nerve blocks (more in the center back of my head). I had this set of procedures on Friday, March 27.
- Tuesday, March 31, 2009 - after a full day of work, I was fired just before 5:00 p.m. I was escorted by security through three buildings, exiting the complex I had occupied as much as my home for the last 11 years--an almost 13 year career with the company my father had retired from down the drain.
- May, 2009 - pain at its pinnacle and desperate for relief, I called to schedule an appointment with a plastic surgeon in Cleveland. He performed a surgical technique involving cuts around the circumference of the patient's head, successfully relieving "migraine" pain for scores of people. I had provided an article about the procedure to my MI neurologist for review and advice; the director of MHNI knew the surgeon and was willing for me to try this direction in care. My appointment was scheduled for July 10.
- June, 2009 - two of my friends/fellow sufferers from the hospital in MI had been diagnosed with chronic Lyme disease. They were encouraging me to get tested. After multiple emails, phone calls, and articles sent, I decided to give the idea legs. I had an appointment in MI with my neurologist on Tuesday, June 9; I set an appointment with a Lyme-literate doctor in Maryland on Thursday, June 11. During my appointment, he found some previously undiscovered "neuropathies" in my hands, arms, feet, and legs. He also found that the area around my gall bladder was very tender. I had my blood drawn at two locations to be tested for tick-borne illnesses, Celiac disease, vitamin deficiencies, and various other ailments. I also had a brain SPECT scan to determine potential impact to the functionality of my brain.
July, 2009 - having begun exploration into potential tick-borne illness, I decided to forego the Cleveland cutting route for now. On Thursday, July 16, I saw my Maryland doctor (my MD MD, as it were) to review the results of my labs and brain scan. The first thing he mentioned to me was my "highly abnormal" (his words) brain SPECT scan results (see picture attached at left). He continued to walk through my lab results, indicating my Lyme results were "equivocal"--not definite; I had only one band in each column (antibodies indicating presence of past infection and current infection). Defeated and a bit confused, I came home with prescriptions to begin long-term oral antibiotic treatment (as if I had Lyme).- August, 2009 - a little over 3 weeks into antibiotic treatment, I feel no different; not better not worse. I sleep a great deal to diminish my awareness of the pain. Even when I'm not sleeping, I'm laying down most of the time--I feel worst when my head is erect (sitting, standing, etc.). One of my chronic Lyme friends had identical lab results to mine (as far as the Western Blot test for Lyme); she is now in her fifth month of IV antibiotics and has many days of NO headpain at all. Just yesterday (8/10), I saw my general practitioner to update her on my Lyme journey and ask her if she would consider starting an IV for me (so I could try IV antibiotics). She was caring and receptive to my questions and information about Lyme, but wanted me to consult with the infectious disease specialist in town. I have an appointment with him on August 26.
