My Story: Headaches as of Jan/Feb 2020

So if you've been browsing my blog at all, you'll know by now that I have been diagnosed with Sjogren's Disease (Sjogren's Syndrome) since 2011(ish) and recently diagnosed with Lupus in the past year.

I've been struggling with overall health issues over the past two years including Mental Illness due to trauma, and autoimmune disease.

I started this blog after going onto long term disability, where my ability to work has drastically taken a turn for the worse. I find it difficult to get up and move around which makes getting into the office downtown is virtually impossible.

In order to keep myself sane I started working on this blog and website. A place to call home, to organize my thoughts, to collect research and document my progress with the disease. It is my hope that in going through this circus of health issues, that I can help people who come after me.

So while many of my previous blog posts are geared strictly towards Sjogren's, and typically with tips on how to manage the disease better, I will from time to time be posting about my own life with the disease. I have a wide range of family and friends who ask for updates, so I will be steering them here, and I will one day like to look back on these hurdles so I can celebrate all I have overcome.

So... its the last week of January 2020 and I have to admit this new year (and new decade) is off to a rough start.

I've had persistent headaches since the week before Christmas. It's not uncommon for me to get headaches with my Sjogren's, especially during cold and flu season. Sjogren's has damaged my moisture producing glands in my nose, so my nose rarely produces mucus. This makes getting a cold incredibly frustrating, because my sinus cavity fills up with fluid and then my head doesn't have a way of draining it properly.

To battle this I have to do some nasal self care such as using a neti-pot, facial steamer, hot steamy showers and nasal gel, along with gently blowing my nose as much as possible.

I was doing all of these things throughout Christmas when I ended up getting a staph infection in my nose. Again, this can be common in Sjogren's patients. Wanna know why? Well, the nasal cavity gets dried out, as I mentioned earlier, my mucus glands are destroyed, so my nose is prone to getting extremely dry, often leading to cracking and bleeding nose.

Well it just so happened this I did get nose bleeds over Christmas, and this caused me to get staph bacteria into my nose causing a bad infection. My nose was red, hot, very painful and full of boils and blisters. It was pretty gross.

10 days of antibiotics and my nose was back to normal. My normal, dry as a desert. Of course during the 10 days I was on antibiotics I wasn't able to do any of my regular nose self care. No neti-pot, no nasal spray, nothing was allowed to go up my nose.

During this time the infection got better, and my headaches got worse.

I was in and out of the walk in clinic and my family doctor at least 5 times over the early January break trying to get all this sorted out.

Unfortunately for me I came out of it all with massive headaches continuing on. My doctor ended up prescribing me migraine medication to see if that would settle the headaches.

The medication she gave me didn't help a bit.

Last week I ended up in the ER because my head pain was so intense. Up until that point the headaches continued to grow. I was heavily relying on Tylenol 2 (with codine), sun glasses and ear plugs to get through the days.

The ER doctor did a CT scan. it came back 'all clear' which is good I suppose.

He confirmed that my sinus were not inflamed. He confirmed that that there was no vascular inflammation in the brain (common in Lupus patients). He too was stumped and started treating for migraines.

Another week passed with intense debilitation headaches. Another trip to the ER. Another few rounds of migraine medication. This medication did little to help the pain and the ER doctor again relied of opiods to manage the pain - he discharged me after administering morphine. Too bad for me I was in to much pain to actually enjoy the high.

I did eventually get back into see my family doctor to discuss these headaches. I asked her to consult with my rhuemetologist to get an understanding on whether the headaches may be Lupus related or not. Unfortunately my rhuemetologist only works in the clinic 2 days a week, so getting a hold of her is rather difficult.

My doctor took the lead and contacted our local neurology office to consult with them. They offered a few ideas on how to manage the headaches. First was starting on a low dose of amatripyline to manage the headaches long term. Second was to start a magnesium supplement, she asked for 250mg/day. Last she offered and provided me Botox treatment in my head - apparently Botox is known for being really good a treating headaches.

I am two days after receiving the Botox treatment and my debilitating life changing headaches are starting to subside. The fog is lifting and I am starting to see some sunshine back in my life. I was even able to get out for a short walk yesterday, and it felt fantastic.

Hopefully the headaches are gone for good and I can get back to managing the day to day hurdles with Sjogren's/Lupus.

Bye for now,

Heather 💜