Literally into the darkness

By jacqui555

3 min read

I will begin at the end of my story and venture into the past as need arises. My latest attack started over 2 months ago on April 3,2014. It has placed me in a darkened house- I am not able to return to work as a teacher- I have missed out on special occasions - I do not drive- and have written my own obituary. I know I'm not alone. I can not remember anything grossly abnormal about April 3rd. I am used to having manydays (20+ a month )of migraine pain. I am, in fact, used to pain and have accepted I have chronic pain. I used to go to work with anything lower than a 6 (very severe pain). I work, or used to work, with special ed kids with both behavioral and emotional traumas. I wanted to offer some stability for the students and would often be at work when I had no right being there. Several times a month I would arrive at work only to realize I shouldn't have gone - but because of the nature of my job - once I was there it was difficult to find coverage and be able to leave. I would take "bathroom" breaks and just lay on the counter and cry.

In March I noticed driving at night was difficult with the headlights blurring into stars. In April I started wearing an ice helmet(a hat that holds 3 ice packs) ( which only stay cold for about 20 minutes because my head gets so hot) at work and home for most of the day-every day. I noticed I started needing to wear sunglasses at work in May. To wear both is very uncomfortable.

I woke up on May 18th unable to tolerate light. My body made the decision for me. I would not be able to force my body to do things it knew I shouldn't be doing. Driving was no longer an option. Working in lite areas was no longer an issue.

So... You may be thinking. Oh my god,.. Where is your doctor. What about treatments. What about scans and tests. What about medications? What is going on?? My neurologist has finally stated he doesn't know what is going on. My PCP stated "you are beyond my expertise). The ER department has told me I should not seek help there since their migraine medications do not help. I agree with the drs. I don't want narcotics. I want answers. I have an appt with another specialist end of July. A specialist in a large city. My current doctor thinks I need IV treatment. He wanted me to get it done in May. I need a consultation first- which is in July. The multiple meds I have tried do not work. One even gave me a mini stroke. I am in my 40's with no interest to have another one of those.

I'm not sure how I get through the worst days. I get bored. Some days I have to wear a mask due to even a little filtered light that gets through the blankets hanging on every window in my house. I lay in bed, wear a mask and tears flow from my eyes even though I'm not actively crying. If I go outside (even with sun blocking specialized glasses) I will have major pain for the next couple days.

I am open to all types of treatments and follow my drs directions. I think I'm a good patient. Over the past 11 years I have tried chiropractic, massage, acupressure, acupuncture, water therapy, emotional therapy, Botox, pressure points, adjusting drivers seat position, physical therapy, new clothing (yes a professional instructed he to do so),and multiple medications. I don't have any pain meds prescribed for me. This annoys me. My quality of life has plummeted and everyone is worried about prescribing medication for pain. There are many non narcotic meds. I am looking forward to my appt in July. I am very hopeful that those doctors will have something new to try. Perhaps the IV treatment if appropriate. Perhaps biofeedback.

Something.

I feel bad for my kids who now live in a dark house. Their rooms are their only solace. I miss them so much. They come in to see me. There are some games we can play. They read to me. My partner is amazing. She does everything. She takes me to appt and describes our surroundings when we go out and I have to wear a mask. She is very loving and caring. She is also frustrated and I know it is so difficult and painful for her to see me in pain. I can't believe this is were I am at in my journey. I know I am learning something. I truly believe everything happens for a reason. I am right were I need to be -for the moment.

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Katie M. Golden Moderator
Willow, I am so sorry for the pain you are in. I think going to the headache specialist in July could be very helpful for you. When anyone gets in a Migraine cycle that puts you in bed for weeks or months, it can be very hard to remember what life was like before. Will it ever get any better? I am concerned that you have written your own obituary. If you ever need someone to talk to, please reach out for help. This is a great resource for getting help from a trained professional: <a href='https://migraine.com/blog/migraine-crisis-help' target='_blank'>http://migraine.com/blog/migraine-crisis-help/</a> Hold on to the feeling that everything happens for a reason. You've got good perspective on the situation. I truly hope you get some relief very soon. And when it feels like you've tried everything, there is always something else to try. And your new doctor should be able to help you with a treatment plan. I wish you the best and please let me know how you are doing! -Katie
Katie M. Golden Moderator
Willow, Has anything improved over the past week? Do you have a new perspective on your illness or the next steps you want to take? Or has it been overwhelming to think about changing your approach? I encourage you to keep fighting. Ever doctor's visit, every research done and every successful plan will give you confidence and remind you that you need to be better for your family. I'm thinking about you- take care and give us an update! -Katie
jacqui555 Member
Hi Katie. Thank you for your messages. Your time is valuable. I'm sorry I concerned you with the talk of obituary writing. It helped me focus on life before sickness. What I have been able to do. But, you are correct...it is difficult to think of how all this will turn out. What the future it like. I must fucNxtion day to day and make changes if needed. I wear my glasses 100% of my waking hours and it does seem to help. I even went to the park last night with my mask on. We agreed not to talk about health or sickness. She read to me-we laughed-for a moment we were able to forget the ridiculous nature of walking around with a sleep mask on my face. (Others have it much worse and I certainly respect them for theIr challenges). Ideally I would like to take the blankets down, were sunglasses outside and in lite indoor areas , return to driving and doing some sort of work. I'll keep you posted. Thanks again for your kind words. It meant a lot. My appt is now next week. A little sooner. I'm glad. Willow
Katie M. Golden Moderator
Willow, I'm here to support everyone on the site, my time is not any more valuable than yours! I loved reading about your walk in the park- what a great memory to have and to remind you that even in the midst of the illness, you can have fun! Who cares what you looked like! I now understand why you would write your obituary- it's a way to summarize your life accomplishments. But I think you're going to have a lot more successes to recount in the future, even with chronic migraines. Please let me know how your appointment goes! -Katie