Well, I have not taken good notes on my symptoms and medication trials this month. Things haven't gone well, so I've had a harder time caring to record everything.
It's mostly a blur of symptoms. I did try the compounded Zantac without the capsule and the compounded Ketotifen without the capsule. Unfortunately, I reacted poorly to them. Especially Ketotifen. I took half of the smallest dose, and suffered from the burning in my torso, followed by insomnia with low blood pressure and pounding heart. I could still try the Zantac again sometime, because I only really noticed digestive symptoms, but I am having those every day anyway, so it may have been fine. I definitely react to the gelatin capsule from the compounding pharmacy, but I don't react to all gelatin (Zyrtec Liquid Gels and Benadryl Liquid Gels are considered safe meds for me.) I understand that gelatin for capsules comes from beef or pork, so maybe I tolerate one but not the other. And even scarier, maybe I won't tolerate them for long.
It also may be possible to have these medications compounded in pure water, and titrate the dose up much more gradually.
The problem is, I would have to get back to baseline first, and I am currently in a flare, where I am reacting most of the time. I don't tolerate my normal food or medicine or environment.
This flare started with a trip to the Optometrist to order a new pair of glasses. I have been putting this trip off for a couple of years, because I figured it would be problematic. I already had the prescription, but I needed to order the new glasses. Unfortunately, I couldn't just order online, because I needed a specialty brand, Silhouettes. These particular rimless, titanium glasses are the only ones that don't give me a headache (although I still prefer no glasses for head pain). With my frequent eye injuries, decent glasses with my current prescription became a necessity. So, I bit the bullet and went in a store that could make these particular glasses. The scent was suffocating in the tiny store. I wore my mask the whole time, but it honestly doesn't matter anymore.
Before the trip to the store, I had actually had 2 good days. I considered myself back at baseline. My digestion still sucked (reflux, bloating, and irregularity), but overall, I was doing okay. Then, on August 26, I went in the store. We took 10-15 minutes to complete the order. I had no immediate symptoms, which was strange, but not too strange. Delayed and prolonged reactions are becoming more common for me. The pain in my face started soon. I did the nasal irrigation to try to rinse out any residual fragrance from my sinuses. Maybe it helped, because the facial pain didn't get worse than a 7.
However, the rest of the symptoms have been hell. I started developing weird, manic energy, followed by insomnia until 8:00 AM (which is pretty damn impressive with the amount of sedatives I take.) I developed itching and hives on one foot and my face.
The next day, I developed severe fatigue, malaise, nausea, and body pain. I was unable to do anything all day. I developed burning pain in my chest and upper arms that evening. Facial pain worsened again. I also got bad abdominal pain.
The following days after the exposure, the burning chest, body pain, headache, nausea, bloating, and facial pain persisted, coming in waves throughout the day.
I also had a couple more days that week with weird, manic energy and panic at times. Benadryl calmed the mania, so we know it wasn't psychiatric in nature, but mast cell driven.
Today, 11 days after the exposure, my mast cells are still overreacting to everything. I get chest burning, small bouts of anxiety, major bloating, reflux, fullness, headache, and nausea a lot of the time. My sleep is mostly back to normal, and I haven't felt manic. But I am no where near normal. Until the burning goes away, I won't feel anywhere near normal.
This burning is such a severe symptom that it has caused me to avoid all pain medications in all circumstances. No matter how bad my pain, I know the burning would be worse than the relief I would get from the medicine. There are a bunch of other medicines I'm also avoiding for the same reason.
So, besides all of this junk, I've been dealing with a new health insurance, which started September 1. I have to arrange to transfer some prescriptions to a new pharmacy, since CVS is no longer covered. Also, they are, of course, going to be 2-3 weeks late in mailing us our new cards. So that has been an annoyance.
But even more frustrating and scary has been that Walgreens informed me that the only manufacturer of Omeprazole that I tolerate will be discontinuing it. My supply officially will run out on 9/25. And I have reacted to all other PPIs that I have tried. It may be the iron that is added to most of them that I am reacting to. But the crazy thing is, I contacted the manufacturer directly to confirm, and they do not seem to be discontinuing this drug. So Walgreens lied to me. My life is absolute misery without it. But I can't figure out how to obtain it. The pharmaceutical company informed me that they contract with Walmart. So I could try to contact them and see if they are able to order this specific manufacturer. But for that, I would need a prescription, and none of my doctors are helping me right now. I will see my MCAS doctor on the 22nd. But that is cutting it really close, and she is not returning my call, which is weird and frustrating. I don't actually have a PCP right now. It would be excellent to have one, especially if I could contact them electronically. But going in offices is still a major trigger for me, so I keep putting it off and spreading out only the most necessary appointments as much as possible.
I could also try to get a PPI compounded, although I did not have much success with the last compounded medicine I tried. But obviously, if I react to all but one of this medicine, it is some filler(s) that I am reacting to, not the drug itself. So compounding makes sense, because they can leave out fillers. It's much, much more expensive though. And I would still need a paper prescription first.
I honestly don't know what to do about this, and I know the closer I get to September 25, the more anxious I will get about running out. I am so scared about it. Why do they have to use so many fillers in everything? And why do I have to react to every building I go in? Why does it have to be so hard all the time?
I've known that I had MCAS for a long time. I've been dealing with illness for the majority of my life. But now that I have the MCAS diagnosis, it was supposed to get easier. So many people just start Zyrtec/Zantac/Singulair/Cromolyn and feel 1000 times better. So far, I only tolerate Zyrtec and Benadryl (only liquid gel form). But that only manages a small number of symptoms. My itching is so much better! But I am still homebound, reacting every day. Prolonged, overlapping reactions. Never getting a break. And I suffer severe untreated pain most days, which has traumatized me. Every time I leave my home, I end up in severe pain for at least several days, as well as becoming more reactive for a week or more, which has also traumatized me. So I am more terrified to leave the house each time. Most of my time is spent alone, suffering. I don't think I will learn to cope with this until I can find something that helps me feel better. I'm not asking for much. Just one level higher on the quality of life scale would make a huge difference. I know I'll never be able to eat what I want, exercise how I want, go where I want, be around everyone I want to see, etc. Just one degree less suffering would be enough. To be able to spend time with my family that I love and haven't seen in over a year due to scent reactions. To maybe visit with friends on occasion or attend an in-person support group. To just not be terrified of every trip out of the house making me sicker. I just need a little help.
Unfortunately, a few of my treatment possibilities are pretty much gone. Brand name Gastrocrom is not covered by my new insurance, so I won't get to try it ($4,000 for a month supply). I would need to try the generic version again, this time titrating as gradually as possible. Ketotifen is pretty much off the table (I have a $100 bottle just sitting here that I cannot take.). And Dr. Afrin has become pretty much a pipe dream. He is creating his own mast cell clinic, but it will be considered an integrative clinic and out of network. The first two appointments with him are $2000 each, in New York. Travel on its own is pretty much out of the question. But the cost of visits is just so out of reach for any average human.
So, I can keep seeing the doctor that knew enough to diagnose me. She is nearby. She is hesitantly willing to help. But she doesn't know what to try next, and really, neither do I.
The only real things left are Xolair and Gleevec. Xolair is an antibody used to decrease allergic reactions. But it is usually only used in patients with high IgE levels, and mine are fine. (Mast cell reactions are not allergic reactions.) There is some evidence of it working in mast cell patients with normal IgE levels, for unknown reasons, but it is a high-risk medicine. It has a high risk of making me worse rather than better. Gleevec is a chemo drug that has some evidence of helping some MCAS patients. Of course, it is a high risk drug, too.
And I'm pretty sure my current doctor wouldn't approve either of these for me.
The only real treatment seems to be trigger avoidance. But honestly, my life is so meaningless like this. I would give anything to get back to baseline. But once I do, I will start to wonder at the purpose of a life like this. A life where I can't see almost anyone or go almost anywhere. A life where I have good reason to be afraid of everyone and everything around me. A life where I mostly suffer alone for leaving the house or trying a new medication. But I think it's better than the alternative.
Any sane person, if going to Target left them with level 9 pain for 5 days, as well as a host of other symptoms, they would never step foot in Target again. Self-preservation is not a neurosis. It is sanity.
Sorry to be blathering, but this prescribed life is so tiresome and meaningless. I can only sit in one chair with the right cushion to prevent SI dislocations. I can only sleep on a sleep number bed on a low setting with 4 mattress toppers to prevent shoulder subluxations/nerve damage. I can only drink lukewarm water. I cannot eat fruit, dairy, almost all meat, and honestly most other food. I have a very short list of supposedly safe foods that are only possibly safe between room and body temperature (I literally have to warm up my almond milk to room temperature to eat cereal, or suffer the burning in my chest afterward from the cold). My air has to be free of scents/harmful chemicals and purified constantly. I can wear one pair of shoes with my $500 orthotics that really need to be replaced, and I still suffer from foot and knee pain whenever I'm on my feet. My body has a very limited number of steps and time upright each day. I rarely have the cognitive ability to have a conversation before 8:00 PM. I spend most of my awake time playing mindless games on my iPad, because that's all I'm capable of, and it passes the time. I mostly view life as something I want to get over with. I hate that I am now afraid of crying or laughing to much, because it also triggers a reaction. I am an emotional person, especially lately, so this is hard to avoid, but I have to try.
I am terrified of the future. I am terrified of the progression of my disease. I am terrified of suffering any future trauma (of which there will be plenty) that will worsen my disease permanently. This will include medical tests, procedures, surgeries, medications, chemical exposures, hormonal changes, loss, grief, and other emotional traumas. If I do have to have a medical procedure or surgery, I will not be allowed pain meds, and pain itself triggers mast cells. If I contract an infection, chances are I will not tolerate the antibiotic I need to treat it. I do not see the point of this life. There is so much suffering and so little outside of it. It is so difficult to find the will to persist and to endure. It is so difficult to find joy with these kinds of life limitations. And the future is so bleak it scares me. I literally try to imagine my dog dying every day, so that when it actually happens, it won't be such a shock to my system. I am terrified of dying when I cannot be in a hospital and I cannot receive almost any medication. As with all chronic pain, my body's capacity to feel pain keeps getting higher. I have no idea how I will ever be able to move to a new home, because I react to all residual scents and nearly all construction/renovation materials, as well as mold and other goodies found in old buildings. I feel trapped in my home and trapped in my body and trapped in this life. I hate that my illnesses make the lives of those around me miserable, especially my husband. He deserves a better life. We both do.
After all that negativity that I really needed to get out, I still need to acknowledge that it could always be worse. I could be without the people that help me through my life. The only reason I keep living this life is because I could never hurt people that have loved me through all of this. I feel so alone a lot of the time, but I know that I have people that believe in me and care. I know that I am so lucky for that.
Sorry for the rough update. I wish I had better news one of these times.
