Living with a constant migraine

Hiking with a chronic migraine (Photo album) https://www.facebook.com/media/set/?set=a.10219681527882667&type=3

I am grateful to the U.S. government for officially recognizing that I am living with a disability and am unable to work. (6/26/20)

https://www.facebook.com/reinard.knutsen/posts/10220504479295938

This afternoon at 12:30 pm marked the 2-year anniversary of my struggle with a constant intractable chronic migraine “without aura and without status migrainosus” that has drastically transformed my life. (9/29/19)

https://www.facebook.com/reinard.knutsen/posts/10218091122123517

My migraine began quite suddenly, on September 29, 2017, at around 12:30 pm, while I was making a delivery of legal documents in downtown Salt Lake City, for my work as Office Manager at the ACLU of Utah. Within two hours I knew I was experiencing a new type of headache (I had never had a history of migraines before) and had to go home.  I struggled, as I tried to seek medical diagnoses and treatments for this bewildering and debilitating experience, to keep my job since I was dependent on it for my, and my daughters, medical insurance and over 60% of our families income.

 I was terminated from my position on 11/9/18 for performance issues resulting from my intractable chronic migraine. My last day of work was 12/14/19. At this point, I am unable to work professionally due to the continuing daily debilitating affects of my migraine. I have to remain hopeful that I can reach employment again on my road to recovery. The fact that I am unable to work has seriously impacted my psyche.

Since my migraine began I have seen 11 doctors, had 2 CT scans (I am unable to get an MRI due to metal around the orbit of my right eye) and multiple blood tests, tried 14 medications (currently on 4 including monthly injections), 2 nerve blocking injection sessions, 2 botox injection sessions, ongoing TMJ treatment, massage, many acupuncture sessions, and a cranial sacral treatment. I have changed my diet and spend time everyday meditating and doing yoga and have tried to keep myself from situations that might exacerbate my migraine. Nothing has worked effectively yet.

My migraine has changed very little since it first began. It can fluctuate rapidly throughout the day depending on circumstances, but usually gets worse in the afternoon and evening. Sometimes (3-4 times a week) it can be quite debilitating requiring emergency medication and several hours to stabilize.

The migraine pain begins as soon as I wake, and is usually firmly in place within a few minutes. I experience the migraine until I fall asleep. Sometimes I wake up in the night with sever pain.

The migraine is a constant, and often intense, pain within my head that mostly concentrates in my temples and inside my eyes. It can fluctuate between pulsating pressure, pounding, throbbing, piercing, stabbing, grinding etc. Loud noise, bright light, chaotic, stressful, and confusing situations all make it worse.

On a scale of 0-10, my average pain level throughout the day is 2-5. (Mostly 2 - 3.5)  When I get a 6, I begin to worry and prepare to stabilize myself. When it reaches a 7 I take my emergency Midrin medication and if I am able to get into a good environment I can usually get it to stabilize and decrease. If it reaches an 8 it becomes debilitating and I have to be in a dark area laying down for several hours to stabilize. This debilitating effect happens several times a week.

Weekly Activities & Triggers - updated 5/17/21

 I have a constant intractable migraine. My pain levels are based upon a 1-10. My average pain level is 2-5. (Mostly 2.5 - 3). The migraine is a constant, and often intense, pain within my head that mostly concentrates in my temples and inside my eyes. It can fluctuate between pulsating pressure, pounding, throbbing, piercing, stabbing, grinding etc. Loud noise, bright light, chaotic, stressful, and confusing situations all make it worse. The pain levels fluctuate, sometimes rapidly, throughout the day, sometimes within an hour I can experience pain on a sliding scale of 3-8. When I reach a 6, I get worried. When I reach a 7, if I am in the right situation, I begin to try to stabilize myself and practice meditation, laying down in a dark quiet room. This can happen several times a week. When I reach an 8, it will take at least an hour of stabilization, or a rest to bring it down.

 My day is based upon pain management. I try to do as much as I can, but in short segments of 15-30 minutes. I rotate between several different activities within an hour and always take some time to lay down and meditate or think for 5-10 minutes. I usually take one nap a day. Whenever I feel my pain increasing I will switch tasks going between house and computer work. I am very slow and try to be meticulous in all that I do.

 My daily schedule includes many things that I have to do to take care of my family. I also have to prepare food, wash dishes, maintain the apartment, laundry etc.. While I am dealing with this migraine and am not able to work, I spend more time taking care of myself and trying to relax. Hiking almost always makes me feel better.

Many things I do throughout the day mayl trigger my migraine escalation. But I can not completely remove myself from obligations and responsibilities. I am constantly observing what is going on in my head and regulating my activities to respond as needed.

 1 Week = 168 hours - updated 5/17/21

Sleep / Rest = 63 hours (9 hours a day. 6 - 7 at night & 2 - 3 during the day.)

Daily hygiene                = 5 hours

Yoga / Meditation / Exercise.        = 9 hours

Walking                = 11 hours (3 urban walking and 8 hiking trails) * Can trigger migraine escalation – if I am exposed to loud sounds like traffic, construction, power tools, etc. In general walking makes me feel much better and decreases my migraine pain)

Reading                 = 7 hours *Can trigger migraine escalation – concentrating

Driving                        = 3 hours *Can trigger migraine escalation, especially at night. (I have tried to stop driving unless absolutely necessary. I prefer to walk to places if possible.)

Eat / meals w. fam        = 3 hours *Can trigger migraine escalation – family meals and conversations

House - Cooking / Dishes        = 10.5 (1.5 a day)

House – Clean / Laundry        = 7 hours

House - Projects         = 5 hours *Can trigger migraine escalation – planning

Computer – Personal         = 10 hours (Email, life stories, writing) *Can trigger migraine escalation

Computer – med. & dis.         = 5 hours (Collecting and updating medical info and disability application) *Can trigger migraine escalation

Computer – family       = 3 hours (Financial, tech) *Can trigger migraine escalation

Computer - games         = 7 hours (Strategy games – Risk, Chess, Scrabble, Jigsaws & puzzles,  etc.) *Can trigger migraine escalation

News & Facebook        = 4 hours (On phone) *Can trigger migraine escalation

Medical appointments        = 3 hours (This fluctuates but is an average) *Can trigger migraine escalation

Watching Movies                = 10  hours (With CC and sound off or very low) *Can trigger migraine escalation

Shopping / Errands         = 2.5 hours *Can trigger migraine escalation