I haven't posted in almost 9 months, so there is no way to cover everything and also no way to keep this succinct. It's been a hell of a time.
I'm apologizing ahead of time for the huge mass of words that follows. (I actually cut out about half of the length to save for another post.)
I'm starting with the highlights of my symptom/reaction journal, which I am not super consistent about keeping. But it is helpful for tracking new triggers and to see the progression of everything.
I kind of lost track of last spring. I was dealing with the weather change and my new reaction to my birth control pill. I ended up having to stop taking the pill. This could have been a disaster, having uncontrolled hormones, but with my low body weight, I actually don't menstruate or have much in terms of hormones anymore. (This was news to me! I had no idea I had lost my period until I stopped taking the continuous birth control.) To be clear, I do not have anorexia. If you have video chatted with me, you know that I eat, usually multiple times, during every call. This is because I eat almost constantly every day. The range of what I eat is quite small, but there is no food intake restriction going on here and no calorie cutting. Nothing like that. None. The opposite actually. However, the ramifications of my low weight on my body are the same. So I found this interesting article on the impact of low body weight on your hormones. As expected, it's not a pretty picture. The osteoporosis is one of the biggest long term concerns since I already had that. Raised cortisol and problems with neurocognition are also concerning. The heart complications are worrisome too. Anyway, here's the articles I found about the medical complications of extreme low body weight:
My predictions about the warmer weather were quite correct, although I never could have imagined just how bad it got last summer.
In May and June, I was suffering from severe sinus drainage clogging my eustachian tube. Without an antihistamine to dry up all the excess mucus, there was no real solution. The only thing I found was that rinsing my sinuses and lying completely flat (no pillow) for at least 30 minutes could shift the fluid around enough to prevent the terrible ear aches and popped ear feeling. Unfortunately, there is not a lot of time in my day where I can lie flat without invoking horrendous reflux. So, that was a terrible issue I was dealing with. I tried raising my dose of Omeprazole, but the reflux actually became worse. There is a serious issue of over-correction possible when it comes to stomach acid. So, my only treatment was baking soda water to temporarily neutralize my gut at this time. That ended up becoming a handy trick I've had to lean on a lot. I do wonder if this could be more related to CSF (cranio-spinal fluid), since the clogged ear is a known problem associated with leaking, but there's no way to really know without specialized scans.
Then, I have a list of symptoms and new triggers from over the summer. I don't really know the order of all this nonsense though.
-The fragrance and cooking smells seeping in through our bathroom became intolerable with the heat of summer. We tried everything we could think of to prevent it, but whenever the laundry was run upstairs or cooking was happening next door, the smell filled our apartment. It would literally smell like a fast food restaurant throughout my apartment at times and a laundromat at other times. Symptoms I had were stupor, palpitations, agitation, crawling skin, migraines, trigeminal neuralgia, as well as new sensitivities developing. At least in June and July, I was able to open the window and use the AC aggressively to try to get the indoor air safer. It let in more allergens, too, but that's how I managed it at the time.
Then, August came, and everything became a nightmare. They sealcoated our parking lot and sprayed pesticides outside, so I could no longer tolerate our AC or the outdoor air. I was totally sealed in. So I put new filters in my air purifier, but unfortunately, the new filters had a chemical smell, and that was an immediate trigger. When I used the air purifier or the AC or opened the windows, I suffered from total insomnia and agitation along with massive pain in my head and face. So August and early September were honestly pure torture. No air conditioning. Extremely hot and humid inside. Scents filling the apartment. No way to air out the fumes. I had incessant high level migraines, facial pain, palpitations, sinus allergies, stupors, insomnia, and utter misery. In addition, I ended up stuck in a vestibular migraine for months. This included extreme sensitivity to sound and motion, causing vertigo, tinnitus, pain, body buzzing, and cognitive exhaustion. That vestibular migraine went throughout October as well, and honestly, has still not gone away to this day. I have multiple layers of migraines still, and they all wax and wane, usually from known triggers, including things like weather.
During that horrible time, I developed new sensitivities and failed some trials. I tried coconut milk in my biscuits since I began reacting to almond milk, but it was worse, despite being a pure ingredient coconut milk. It caused me tachycardia, shortness of breath, sudden fecal incontinence, and insomnia. I get the tachycardia and shortness of breath whenever I eat biscuits, but this was clearly worse, so I reverted back to the almond milk biscuits.
I also ended up with biscuits made with baking powder on accident once, and the reaction was very apparent to me. Baking powder (a miniscule amount) caused burning in my chest, agitation, hives, tachycardia, palpitations, and shortness of breath. I just felt really off. Yes, these reactions are getting boring and predictable to describe, but they are no less miserable to go through just because I've been through them a million times before.
I tried using canola oil instead of olive oil on the off-chance that I was reacting to salicylates in the olive oil. The canola oil caused severe lower intestinal cramping (not a usual symptom) with no GI symptoms, followed by heart pounding overnight with nightmares, sweats, and sudden wake ups. My burning mouth went away, but the trade off was too much.
I tried adding cauliflower as a new food. I added such a small amount but ended up with major bloating and loose stool.
I tried butternut squash, and while I can't remember the whole reaction, I think burning and insomnia were involved.
Then, my reactions to my safest version of my biscuits got so intensified in the heat. And I eat my biscuits twice a day, so it's a lot to go through. I tested my vitals one day to document my body's reaction to the biscuits. Before eating the biscuits, my blood pressure was 85/55 with a heart rate of 55. After, my BP was 90/72 with a heart rate of 134. I was in a deep stupor and out of breath for a few hours. And I am still eating those same biscuits and tolerating them some days more than others but always reacting to some degree. I am in no position to reduce any food, so I just have to live with it.
Okay, so the timing of a lot of this is kind of uncertain to me. What I do know is that just as the fall cooling down had started, I had one of my worst reactions in recent times. And it was straight up ridiculous. My body had been through so much distress that I was just primed for something new and horrific to happen. I shared this in a support group with someone else who was dealing with a similar problem:
"I don't even think people would believe how sensitive I am to raw onion. But here goes... My husband was out of town and ate at a meal that included raw onions. He slept out of town and then came home the next afternoon. The moment he walked inside, I began reacting (with the severe burning and vestibular migraine I described earlier). I had to isolate from him for 36+ hours. He couldn't come into the bedroom where I was hiding. The longer he was home, the more the smell of onions filled our living space. It not only stays on your breath but comes out through your pores. He had to sleep on the couch with the windows open. Despite all that, I developed the worst vestibular migraine of my life. It is still severe today. I cannot tolerate any sound. Severe vertigo and tinnitus and trigeminal pain and head pressure. I can't tolerate movement around me. I can't watch TV. The sound of a faucet being turned on and off or the refrigerator running is jarring. I have also had many spells of reduced consciousness (stupor), and my lungs are on fire. Today is day 7. It is absolute torture. Each time I am exposed to onion in any way, I become more sensitized to it."
That reaction began September 13 and went on throughout September and October. This was a very dark time.
I found a little info on the likely chemical trigger for me, based on my experience:
"Allyl methyl sulfide. This compound is released from both garlic and onions when they are cut. Once eaten, the substance is absorbed into the bloodstream, and emitted through the lungs and skin pores." (https://www.medicalnewstoday.com/articles/321334#why-do-garlic-and-onions-cause-bad-breath) I believe I have become hypersensitized to this chemical, like so many others.
Nonetheless, in September, I started experimenting with adding potatoes back into my diet. I started cautiously. I knew I don't do well with sweet potatoes, but I thought gold/yellow potatoes might be okay. And I could tolerate them...sort of. I noted my vitals one time with the yellow potatoes. My blood pressure was 81/52 with a heart rate of 49 beforehand. My body felt calm. Afterwards, my BP was 90/66 with a heart rate of 102. My body felt tingly with an itchy scalp and bladder pain, and my sleep was poor. I tried for a few weeks, but it just wasn't quite working. But I wasn't ready to give up since it was somewhat tolerable. I switched to white Russet potatoes, eating a quarter a potato at a time. I had much less side effects from it, and I have built up to eating a half a potato a day. So I do officially have a new food. In reality, I am reacting after every meal now, so I've also just accepted a greater level of discomfort to follow eating (which is really throughout the day). Some days are worse than others still when it comes to food tolerance, depending on my baseline for the day.
But what I am eating daily is:
Okay.
After a consult with an integrative doctor, I decided it would be worthwhile to work on weaning off of my Omeprazole, despite the deep level of suffering I experience from acid in my stomach and esophagus. I did a 3-day stool test for this doctor, and it determined that I have severe (10/10) gut dysbiosis, and PPI medications are a likely contributor. There's also a documented association between acid suppressing medicines and the development of food allergies as well as drug hypersensitivity reactions. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464390/) Please read this article if you take acid reducers of any kind: PPIs, H2s, Sucralfate. Unfortunately, these are often used to treat the excessive acid production in the upper GI in mast cell disease, particularly H2s, which are used to treat mast cell disease, even in the absence of acidic symptoms.
I have been on some form of PPI since I was prescribed one as a teenager. Doctors were prescribing them pretty freely at the time without recommending only short term usage. I believe the PPI use could be implicated in a number of my symptoms, including a lot of my GI symptoms. "Ever since this first report, several experimental as well as human studies verified this correlation, demonstrating that acid suppressive drugs not only influence the sensitization capacity of orally ingested proteins, but also represent a risk factor for food allergy patients. Additionally, gastric acid suppression was reported to increase the risk for development of drug hypersensitivity reactions. These consequences of anti-ulcer drug intake might on the one hand be associated with direct influence of these drugs on immune responses. On the other hand reduction of gastric acidity leads to impaired gastrointestinal protein degradation. Nevertheless, also disruption of the gastrointestinal barrier function, changes in microbiome or lack of tolerogenic peptic digests might contribute to the connection between anti-ulcer drug intake and allergic reaction."
https://pubmed.ncbi.nlm.nih.gov/20060064/
https://pubmed.ncbi.nlm.nih.gov/29678362/
So there are many mechanisms by which the PPI usage and gut dysbiosis are promoting both my intolerance to foods and medicines.
So, I started by weaning down from 20mg to 10mg daily. This was my idea. I thought the more gradual drop off would be more likely to stick. These are already low doses of the weakest proton pump inhibitor. Nonetheless, rebound acid and a return of symptoms are common with withdrawal. I decreased my dosage on 10/25, 10/31, 11/5, 11//9, 11/12, and 11/14. Since then, I've been on only 10mg daily. Unfortunately, the return of symptoms has been severe, making it even more challenging to eat. My gut burns. I get reflux up my esophagus into my mouth. I have severe bloating. I have a metallic taste in my mouth with burning and foul breath. The burning pain in my chest radiates outward with nerve pain. And frustratingly, I have to stay awake even later than usual to allow my body to digest enough to be able to go to bed. I am routinely up until about 4 AM now. The baking soda helps, but I try to take it as little as possible since the whole goal is to have more stomach acid, not less. It is frustrating and painful.
I still have a long, miserable way to go to wean off fully. I was waiting for the symptoms to subside before I start the next wean, but it doesn't look like they will. So the next plan is to skip my dose every 14/13/12/11/10... days until I am off of it. I don't know exactly when I will start, but it doesn't look like I will be able to wait out the symptoms. They are honestly getting worse as time passes. It would be so much easier to just go back to my usual dose and get some relief from literally constant heartburn and reflux. (I go to bed with it, and now I wake up with it too.)
The thing is, I am being persistent about this (despite deep-seated fears of untreatable ulcerations and esophageal cancer), because I believe it could make an actual difference for me in the long term. So far, I have already noticed improved sleep and decreased need for laxatives. It could be the source of my chronic constipation. It will be a 3+ month weaning process with lots of misery, but I don't really see any choice. I am not really willing to try any other recommendation made by anyone. So this is the misery I am choosing, I guess.
Okay...back to my diaries. November had some pretty big hits as well, besides the acid misery. Some massive pressure drops put me into a full-on pain crisis multiple times. Widespread burning, massive abdominal bloating, headache, severe lumbar and sacral pain, decreased mobility, bladder dysfunction, interrupted sleep, trigeminal pain, eventually full body pain. It lasts throughout the night when it happens. Just utter misery.
I had another worse-than-ever reaction to intimate activity. More genital pain than I had imagined possible before this. So the vulvodynia has spread to include clitorodynia. TMI. I know. But someone out there just might read this and deal with the same thing. My severe abdominal swelling has also not stopped since that day in November, although I think it is finally lessening.
Then, right around Thanksgiving, I had to test a different brand of clear cellulose capsule because the one I buy was sold out. I use these to take my magnesium, which is the only way I have GI movement. These are both made from cellulose turned into HPMC (hydroxy propyl methyl cellulose). Unfortunately, the different brands are clearly not all made alike. I even confirmed before purchase that the ones I bought were one of the "cleaner" brands in how they are processed. The new brand I tried, Solaray, is made of HPMC and water, no preservatives, additives, or excipients. What more could I have done?
More info on capsules: https://clearandwell.com/what-are-capsules-made-of/
Anyway, the capsule immediately tasted like Lysol, so I initially spit it out. But I knew I had no alternative since my safe brand has been almost completely sold out for the last 6 months, so probably discontinued. So I wiped off the capsule and then swallowed it anyway. I was on a video call at the time, and continued with the video call, despite some crazy symptoms. I immediately got the head pressure and tinnitus, burning chest, adrenaline rushes, and progressed to burning eyes, itching, tingly bladder, mouth burn, a migraine aura, body buzzing, and a level 8 headache. I couldn't sleep. My acid symptoms were much worse. This went on for about a week.
December brought with it new reactions to airborne food exposures. Because this disease is freaking relentless. It does not let up. So if one thing lets up, something else gets to me instead. So, I've been reactive to the smell of fresh ginger for a while, but my husband has gotten in the habit of immediately throwing it in a ziploc bag and into the trash when he buys his prepared sushi (one of the few foods he can eat at home). Unfortunately, this was no longer enough to prevent the burning pain in my chest and mouth. The smell of pastrami causes the same reaction. Same with whiskey. And these are lasting reactions. Days if not weeks. Not just a few hours. I also started reacting to particularly fragrant apples, even if they are stored in a ziploc bag in the fridge. That causes migraines. Then, the newest one is an airborne reaction to peanut butter. It's probably been going on for a while, but I just finally put it together. I've had really random days of severe sinus allergies with large amounts of mucus produced, intense itching, and the high histamine levels keeping me up all night. (And obviously not being able to treat my allergic symptoms or high histamine) But now I seem to have put them together as a cause and effect. The longer I am exposed to the peanut butter, the worse the histamine reaction. So that's a whole new ordeal in an endless string of ordeals. So, so, so much of the burden lands squarely on my husband's shoulders. Yes, I suffer the symptoms. But he has to watch me suffer and decline in addition to making huge changes to his life to try to protect me from my own freaking mast cells. And he has been doing an amazing job of not making me feel like a burden, even though I know I am. I am so fortunate to have him.
In addition to new sensitivities developing, I still constantly deal with ongoing sensitivities. The biggest ones that come up in daily life and invade my home are smoke and skunk. I have severe and prolonged reactions to both. I get into the worst trouble when I try to ignore the first hints of the irritants in the air. When I'm being smart, I run to the bedroom at the very first sign of either one. If I'm lucky, the bedroom air will not yet be contaminated, since it's around a little corner. The airspace is somewhat protected. But just a couple nights ago (you know--when the world was turned upside down), I didn't make it to the bedroom in time. So I had to stay in the bedroom with the air purifier cranked and wearing my respirator. The migraine was already well underway, and wearing a respirator pressing up against your trigeminal nerve and squeezing your sensitized scalp does not help! I never know the source of the smoke, but I assume it's usually grilling, and if it goes on for hours, I assume a bonfire. And those people will never know the amount of suffering brought on by their air pollution. We have sealed the apartment up in every way feasible, but plenty still gets through.
So what's next?
