I've again been having trouble thinking clearly, so sorry if this isn't quite coherent and organized.
I have been put on a trial of mast cell stabilizers. One is Nasalcrom, which is available OTC. So far, at times I think it's helping a lot, other times not so much. I've also been put on a really strange version of oral Cromolyn Sodium. I'm not quite sure why, but I was given the nebulized form of Cromolyn, and told to take it orally. This form of the medication is quite a bit more expensive, and also a much lower dose than Gastrocrom. Hopefully next month, I'll be able to try the real thing. For now, I thought it might have been helping, but maybe not so much. I'll update more when I try the real thing.
I'm still having reactions to all kinds of things, the worst one still being perfume. I wear my mask whenever I need to, but it's not perfect. It doesn't form a perfect seal with my face, so plenty of perfume seeps in. I've had a bit more success tying a shirt around my face, but I do feel pretty strange doing that in public. Also, you can't very well wear a mask when eating. For me, perfume, air fresheners, and any kind of fragrance, trigger all kinds of symptoms. The worst is the migraines. Any perfume exposure can trigger a migraine that can last as long as five days. Other symptoms include itchy airway, difficulty breathing with a deep cough, and full-body itchiness. I have started getting nervous to leave the house, and just kind of dreading it.
The only good news is that whatever was triggering me inside the apartment is gone. Our apartment is my safe space. The only thing that gets me at home is cooking smoke, which isn't a problem too often.
With so many illnesses and such a variety of symptoms, I've come to expect the flares. Sometimes, I can even just accept it gracefully when a new problem, or an old problem, arises. It has definitely helped me to think of myself as "riding the waves" of my illnesses. (This phrase is borrowed from a book about POTS called POTS - Together We Stand: Riding the Waves of Dysautonomia.) Somehow, knowing that the symptoms will wax and wane makes it easier to accept during the waxing times.
I have been put on a trial of mast cell stabilizers. One is Nasalcrom, which is available OTC. So far, at times I think it's helping a lot, other times not so much. I've also been put on a really strange version of oral Cromolyn Sodium. I'm not quite sure why, but I was given the nebulized form of Cromolyn, and told to take it orally. This form of the medication is quite a bit more expensive, and also a much lower dose than Gastrocrom. Hopefully next month, I'll be able to try the real thing. For now, I thought it might have been helping, but maybe not so much. I'll update more when I try the real thing.
I'm still having reactions to all kinds of things, the worst one still being perfume. I wear my mask whenever I need to, but it's not perfect. It doesn't form a perfect seal with my face, so plenty of perfume seeps in. I've had a bit more success tying a shirt around my face, but I do feel pretty strange doing that in public. Also, you can't very well wear a mask when eating. For me, perfume, air fresheners, and any kind of fragrance, trigger all kinds of symptoms. The worst is the migraines. Any perfume exposure can trigger a migraine that can last as long as five days. Other symptoms include itchy airway, difficulty breathing with a deep cough, and full-body itchiness. I have started getting nervous to leave the house, and just kind of dreading it.
The only good news is that whatever was triggering me inside the apartment is gone. Our apartment is my safe space. The only thing that gets me at home is cooking smoke, which isn't a problem too often.
With so many illnesses and such a variety of symptoms, I've come to expect the flares. Sometimes, I can even just accept it gracefully when a new problem, or an old problem, arises. It has definitely helped me to think of myself as "riding the waves" of my illnesses. (This phrase is borrowed from a book about POTS called POTS - Together We Stand: Riding the Waves of Dysautonomia.) Somehow, knowing that the symptoms will wax and wane makes it easier to accept during the waxing times.
I've had a lot of trouble with migraines lately. Some of my most intense, prolonged, and intractable migraines have happened recently. I don't currently have a neurologist or pain management doctor, and am not really excited to look for one. At their worst, my migraines are all-encompassing. The abortive medications don't work particularly well for me, and they often trigger rebound headaches if I take them more than two days in a row. But my migraines often go four or five days at a time. I've been missing a fair amount of work lately, and also some social time.
Some flares are things I can usually take in stride. Like the lovely flare of night sweats and random neuropathic pain patches I've had lately. I just keep a change of clothes by my bed for the night sweats, and use Lidoderm patches liberally for the neuropathic pain. They're annoying, but mostly manageable.
I really hate insomnia flares, because they definitely make my migraines and my POTS symptoms worse.
I really hate insomnia flares, because they definitely make my migraines and my POTS symptoms worse.
Recently, I've had a flare of my GI symptoms, which is really disheartening. I really thought I had a hold on how to minimize these problems, but my system decided the current system wasn't working anymore. I've started reincorporating the low FODMAP diet in with the rest of my diet, with moderate success. It's just so frustrating that I had a reliable eating plan again, and now I've had to rework it. Luckily, I knew what to try. I mostly replaced my daily apple with cantaloupe (which is low FODMAP and low histamine), and cut out the garlic and onion. The rest of my diet has been able to stay the same. But knowing my system, I'll probably be able to add them back, in moderation, at some point.
It is really hard to explain what I can't eat to people, so I usually just try to say what I can eat.
Lately, my safe foods are:
Almond milk
Oat-based cereal
Rice-based cereal
Egg
Cantaloupe
Rice cakes with peanut butter
Mandarin oranges
Quinoa
Chicken broth
Chicken
Cooked carrots
Cooked green beans
Sweet potato
Homemade bread, made from sorghum flour and pumpkin
That's the list for now. It seems like enough variety to me, but eating out is still tricky. And some days seem to be bad no matter what I eat. And some days I just wish I could eat a big salad followed by a milkshake! Oh well, it's simply not worth the symptoms most of the time. I do occasionally splurge when eating out, with mixed results.
I hope I covered everything. If not, I'll be posting again in a few weeks, as it will be the 2-year anniversary since my latest fusion surgery.
It is really hard to explain what I can't eat to people, so I usually just try to say what I can eat.
Lately, my safe foods are:
Almond milk
Oat-based cereal
Rice-based cereal
Egg
Cantaloupe
Rice cakes with peanut butter
Mandarin oranges
Quinoa
Chicken broth
Chicken
Cooked carrots
Cooked green beans
Sweet potato
Homemade bread, made from sorghum flour and pumpkin
That's the list for now. It seems like enough variety to me, but eating out is still tricky. And some days seem to be bad no matter what I eat. And some days I just wish I could eat a big salad followed by a milkshake! Oh well, it's simply not worth the symptoms most of the time. I do occasionally splurge when eating out, with mixed results.
I hope I covered everything. If not, I'll be posting again in a few weeks, as it will be the 2-year anniversary since my latest fusion surgery.
