Sinusitis Sucks

     Almost immediately after realizing I was actually happy again I was struck down with a bout of sinusitis. It started off as your usual cold and was so insignificant to compared to my other discomforts that I ignored it and expected it to clear up on its own rather soon. It didn't. I had it for almost 6 months. Then it got worse, comparable to a flu but being very sick when you have a chronic illness is a whole new ball game of hell. The worst part is the way being sick affects my regular chronic pain. It makes it far worse. Exhaustion and bad news and traumatic events can bring forth the occasional tears but it's very rare that my pain alone makes me break down simply because it's so constant. So if pain is making me lie awake at night crying you know it's truly unbearable. On a 10 pain scale it was easily a 9. It was so bad I couldn't stand unsupported. I took the maximum number of pills I could without risking acute danger and that still wasn't enough to put me to sleep through the pain. They eventually simply wore off. I was so tired it felt like I had been awake for days except I still wasn't sleepy because of effects of the pain. I had codeine on hand but since I'd been taking it daily for so long it had very little effect due to tolerance. Then there was the headaches. They would get excruciating whenever I strained to do anything or leaned forward. I was constantly spitting crap up from my throat and typical cold symptoms came and went. The Guelph doctor gave me antibiotics but they didn't help.

    If you want the opinion of an observer of my good and bad days simply ask my dad or sister about our trip to the dentist. I had an awful sleep and couldn't sleep in to make up for it because of the appointment. My dad had to drive us because of my exhaustion, I was essentially an irritable zombie. I figure I'll feel better the next day because of my alternating days sleep quality pattern. This is why I need to know about plans in advance. I will purposefully wake up early the day and feel awful the day before an event to ensure I sleep wall that night. Despite my debilitated state I couldn't sleep well that night either because the pain is severe enough to keep you up for what feels like indefinitely. Even just last night I stayed up until 5 am to see if it allowed me to fall asleep while taking less pills. It didn't. Now that summer break has begun I have been focusing on taking less medications at the expense of much of my functioning and results have varied. Staying up until 5 am hardly made a difference, it allowed me to take 1800 quetiapine instead of 1950. My most successful night so far involved taking 1650 quetiapine and half the amount of zopiclone. I'm just doing what I can to minimize the risk of diabetes developing due to quetiapien overdose. I'm just hoping that my situation will improve once the sinusitis is gone. I have trouble differentiating between having a headache and being sleepy so I would take a couple of tylenol before bed which has been moderately effective.

     I arrived back in Toronto and the sinusitis still hadn't improved so I went to see a nose doctor. He examined me and said I definitely still had sinusitis and that it was very severe. He said the inside of my nose and throat were extremely red. He gave a prescription of a stronger antibiotic called Biaxin. I wanted to know about any potential side effects so I looked it up when I got home. That's when I noticed something incredibly alarming. Under the 'drug interactions' section it warned not to take it with... maybe you guessed it... quetiapine. Yes, the very same medication that I take a dose of up to 2300 when the maximum dose is supposed to be 300. I don't even want to think what might have happened if I didn't notice that. This wasn't the first time something like this has happened. Some of you might remember my bout with serotonin syndrome back in what I believe was 2014. I had suddenly started to get really sick and looked up my symptoms online. We sent a message to my neurologist asking about my concerns and lo and behold he said I needed to stop tramadol (an opioid) immediately because it was interacting with mirtazapine; both drugs contain high levels of serotonin. Serotonin syndrome is no joke, if unresolved it will likely drive you crazy and then kill you. I just felt the very beginning of that danger and knew something was wrong. That was rather frightening and then I had to deal with tramadol opioid withdrawal while at camp. Even after this happened I suffered yet another bout of serotonin syndrome from the interactions of a different medication. Here are a list of symptoms, I put the ones I experienced in bold:

• • Cognitive effects: headache, agitation, hypomania, mental confusion, hallucinations, coma
  • Autonomic effects: shivering, sweating, hyperthermia, vasoconstriction, tachycardia, nausea, diarrhea.
  • Somatic effects: myoclonus (muscle twitching), hyperreflexia (manifested by clonus), tremor.
  
  
      To prevent these situations my brother who is a doctor recommended I mention my copious amount of medication every time I see another doctor. I told my dad about the quetiapine danger who then told my doctor who then switched antibiotics again to moxifloxacin. I'm still waiting for that to kick in. I'm proud of myself because despite the sinusitis I started working out again for the first time in months, even doing two sessions in one day and then writing a blog post. I had slept well the night before which just shows how much more I'd be capable of if every night was a good night like that. I still looked fairly strong even after not working out for months. I theorized that I don't lose muscle progress because my muscles have to work overtime to make up for my bad joints. This causes pain and is the main source of fatigue in people with EDS. Perhaps this also prevents atrophy even after extended disuse. My tone won't improve if I'm inactive but it also seems like it won't revert the progress I've gained. 
  
      It was finally time for the appointment that it felt like I'd been waiting forever for, that being the one at the brand new EDS clinic I helped open. Being one of the first patients at the clinic seemed like a fair reward for my efforts. The appointment lasted almost 3 hours. We went over my medical history for an hour, they examined my physical condition for an hour, and then I asked them questions for an hour. They told me I should ask my neurologist about doing pharmacokinetics testing which could cost thousands of dollars. It would show how I metabolize certain pills. The clinic is more of a decentralized institution that sends you to the doctors you need rather than having all the doctors there themselves. They found that I have orthostatic hypotension, which is what causes me to be very dizzy after standing up. They were the first to tell me that I have dysautonomia meaning my autonomic nervous system isn't functioning properly. That was one of the few presentations I thought I'd been spared. To address this the doctor told me I need to see a cardiolagist in Hamilton who is familiar with EDS. I need to get an ECG every 5 years to ensure no prolapse and an eye exam every two years to make sure I don't experience a detached retina, which are both associated with EDS. I'll also be seeing a new sleep doctor. He's not an EDS specialist like I hoped but he's at least familiar with the disease in contrast to my current sleep doctor who had to look it up when I told him my diagnosis. 
      
      I told them about the stinging hot rashes I started getting a couple of years ago and so they suspect I might have mast cell disease, an autoimmune disorder that is also associated with EDS. I've still heard nothing from the EDS experienced sleep specialist in Washington. I was put on his wait-list for a year. At the clinic I received validation about my complaints about my pinky fingers. I would always show people how it only can get locked into 2 positions, I have no freedom of movement with my pinky fingers. It seemed like they'd never really seen something like that before and they told me it was happening because my tendon keeps sliding over my bone. They found lots of deformities but mostly talked about them to each other in medical jargon. Those that have had the pleasure of seeing me shirtless probably has noticed I have a bump in the middle of my chest where my bone is poking out a bit and I had winged shoulders that pop out in my back. In the end they told me there's absolutely no doubt I have EDS and that they will keep in touch as they start to set up medication trials and case studies.