Saturday, July 15, 2017

July 2017

I have a bunch of posts in mind to write, but there is enough going on that a standard update is needed first.

I had some major reactions in June.

On June 19, I got a bug bite. I didn't even notice the bite itself at first. Just my body's reaction to it. It was the day I developed a fever of 101.5, severe joint and muscle pain, head/facial pain, abdominal cramps, nausea, absent appetite, tachycardia/pounding heart, low blood pressure, reduced consciousness with intermittent loss of consciousness, and marked weakness. At the time, I though it was a reaction to going to a doctor's office. I now believe this was mainly a reaction to a spider's venom, followed by an infection, complicated by a mast cell reaction.

When I saw a GP one week later, I still had a fever, and the bite was rather grotesque looking. For fear of triggering another reaction, I delayed taking the prescribed antibiotic for a day. Very luckily, my fever went away, and the bite started quickly fading. Since then, the fever has not returned (thank goodness). I know many people will suggest this, but I'm told this didn't really follow the pattern of a tick bite/Lyme infection. I will make sure to get re-screened for it, but I truly believe I would be feeling worse by now, when really, I'm back to my baseline.







I know. It got pretty terrible looking. It never hurt or itched too much, but it was very hot. The doctor reassured me that it sounds like a spider bite.

On the last day of fever (June 27), I had another bad reaction. I believe the triggers were multiple nights of poor sleep, as well as a formulation change for my probiotic (Culturelle has additional fillers now). There could have been other triggers, but it is sometimes really hard to sort it all out. I was struck with a sudden, intense headache, followed by a hot flash. In the following 6 hours, my vitals tanked. I spent a long time with a reduced state of consciousness (basically a stupor), with some intermittent loss of consciousness. Even after medication to raise my blood pressure and extra salt and fluid intake, my blood pressure was 80s/50s the rest of the day. Along with a low heart rate around 50 (not typical of a POTS reaction). I had shortness of breath with movement and upright posture, burning chest, heart pounding, and developed a throbbing migraine at bedtime. I still don't know the true trigger, although often MCAS reactions happen when you stack triggers. Individually, they may not trigger very noticeable symptoms. But when stacked together, they can trigger a major reaction. There is also a bucket analogy to explain this. Each trigger adds to the bucket, and you don't get symptoms until the bucket overflows. (I still love this article to explain the phenomenon of cumulative triggers and why you can tolerate something one day but not another day: http://www.mastattack.org/2016/04/the-devils-arithmetic/)

Anyway, I had a follow-up with my allergist on July 7. The doctor wasn't as proactive as I'd hoped regarding treatment. She only wanted me to take more of my current antihistamines. Luckily, I got up the nerve to ask about a few other treatments, and she was amenable to trying them both, although she was not optimistic. She told me she only has three other Mast Cell patients, so she isn't sure what else to try. But, she agreed to prescribe two medicines to be compounded. One is Ranitidine, which an OTC H2 blocker, used to stabilize mast cells. I have to discuss with a pharmacist the need to use a minimal number of fillers. (This was not included on the prescription.) The other one is Ketotifen, which is commonly used in other countries, but not FDA approved in oral form. It is supposed to be an H1 blocker as well as a mast cell stabilizer. Again, I need to find a compounding pharmacist to help me figure out the least and safest fillers we can use to compound it. Different compounders have access to different medications, and different willingness to compound in new ways. Also, prices can vary wildly, because the pharmacy sets the cost and doesn't take insurance. So, I haven't started the process yet. Once I do, I'll have to trial one medication at a time, and desperately hope that I can tolerate them, and that they have some kind of positive effect.

I've been dealing with a few other triggers this summer. One is that I can no longer tolerate iced or cold water. It adds to the burning sensation in my chest. I'm getting used to drinking room temperature water (about a gallon a day is needed).

A huge problem in summer is outdoor smoke. Grilling, bonfires, and meat smokers. All of it kills me, and makes me glad I now have an EpiPen. It's hard, because I can't take Wilma outside if it's in the air. And we have to avoid even opening doors to outside. I get immediate pain in my head and coughing/wheezing from even a single breath.

Also in the summer, I have to run the A/C a lot of the time. We have a wall unit. Unfortunately, it doesn't filter out all smoke. That puts me in a really scary situation, because there is nowhere to escape. So, I feel on edge whenever the A/C is running, because I don't want to let anything dangerous into my home. Even a person walking past with a cigarette while the A/C is running can ruin my entire day. But, I have to run the A/C. You don't want to see me when the indoor temperature is higher than 76 degrees (I develop presyncope with reduced consciousness.) So, I have to risk it a lot of the time.

Finally, I've started having trouble just sitting in the family room at mom's house. It is connected to the attached garage. I will randomly start smelling faint gasoline fumes, and a reaction slowly develops, getting very severe some days. Having to avoid the family room just keeps me even more isolated. We even stopped using the door to the garage, but I can still smell the fumes.

I'm also reacting to fragrance free sunscreen now. I wish i could find a sunscreen with truly no scent, but then it probably wouldn't actually work. I don't personally wear any. I just cover up with clothes (which does not help my heat tolerance). But people around me who spend a longer time outside obviously need to use it.

It drives me crazy to constantly have the world attacking me, and to see my sensitivities continue to progress.

Anyway, that's what's new. I am still so grateful for my safe havens. Luckily, my bedrooms in each home are both still safe spaces, which I have to protect carefully. I am so lucky that the people I live with help me to keep it that way.

I'm also so lucky to have my little companion, Wilma. She is the most low-maintenance dog I've ever known, and we are very attached, spending nearly 24/7 together. I am allergic to most dogs, but I don't believe I react to her.

I'll post again soon, hopefully. Thank you for still reading and still caring about my lonely saga.