First, our new insurance plan started on July 1, but we haven't received the new cards yet, so I can't get any prescriptions or see any doctors right now.
So, on Thursday, I woke up with pink eye in my right eye. Luckily, I had leftover and not too expired drops from my last case of pink eye, so I started using those, and sanitized everything I could find in the house.
Then, Friday, I woke up with a really sore throat...which is always the first sign of me getting sick. I came down with a cold, but it wasn't too bad yet.
Friday night, I couldn't sleep too well, due to the sore throat. Lots of salt-water gargling, lozenges, and Tylenol to get me through the night.
By Sunday, after more sleepless nights, I had a deep chest cough and mostly lost my voice.
Last night, I couldn't sleep again, from the coughing and the painful throat.
I slept a lot today, just trying to recuperate. Feeling the same, so far.
Of course, since my body is busy fighting off this bug, everything else is worse. My POTS symptoms are flaring, as well as potential mast cell symptoms.
Then, of course, I have a sinus headache. This is, of course, in addition to my regular tension headache. And, just for fun, I've been fighting off a migraine for 8 days. Plus, my massage therapist had to cancel, so I've gone a few weeks without a massage, making the headaches all worse.
Now, my hubby contracted my pink eye. This is all overwhelming. So sick. Hoping for some relief soon. And hoping that my hubby doesn't get my bronchitis/laryngitis thing. It's hard living out in the middle of nowhere, far from family. Especially when things are hard like this.
Hopefully, I'll be recovered soon, cause we're getting our new puppy in less than two weeks!
But, every illness is a setback, so I will try not to expect too much too soon from my delicate body. This was a pretty big hit, so there will be some rebuilding to do.
Monday, July 22, 2013
Tuesday, July 16, 2013
Avoidance Gets You Nowhere
I have so much to write about. I keep thinking of new things I need to blog about, but I never get it done.
So, I guess I'll start with a subject I've been trying to avoid for at least a year now. It's only now that it seems I can't completely avoid it anymore. I may have another condition. No, I'm not diagnosis-hunting. It's just that there is another condition that is now being linked to the whole EDS/POTS/Chiari/CCI group. And I absolutely would not care for a second unless I were actually having symptoms right now, which unfortunately, I am. I also would not care unless there was a chance something could be done about this that would improve my level of functioning and quality of life.
That being said, the name of the condition is "Mast Cell Activation Disorder" or MCAD. I will add some informational links here soon. In the meantime, if you are looking for information, the disease functions very much like Mastocytosis. There is not much information on MCAD (also called MCAS for "Syndrome".) But it is still being treated. The current understanding is that MCAD is caused by over-reactivity of the mast cells to many benign triggers. If you've known me for a while, you know that I've had quite a few odd and even dangerous reactions to medications over the years. You may also know that my throat closes up whenever I'm around cigarette smoke. These could potentially be mast cell reactions. You know how I have had a variety of food intolerances over the years? These could potentially be mast cell reactions.
A seemingly insignificant part of my medical history is my allergies. As a child, I tested positive for every major allergen. During college, my allergy symptoms worsened, so I was retested, but found to have no true allergies. This would be an important part of my mast cell history.
If it were just these things, I still probably wouldn't look into this diagnosis, because who needs another diagnosis? But, mast cell reactions can also include: persistent fatigue, brain fog, headaches, tachycardia, sudden drops in blood pressure, fainting, cognitive impairment, vision problems, nausea, problems with anesthesia, decreased bone density, shortness of breath, temperature sensitivity, gastrointestinal pain, and bloating, If these symptoms are being caused by inappropriate degranulation of mast cells, treating these overactive mast cells could be an important part of my treatment.
There are a few easy treatments that doctors often try as a way to see if MCAD should be considered. If you respond positively to these treatments, you probably have some form of mast cell disorder.
The first treatment is with OTC Histamine blockers. H1 blockers include typical allergy medications, like Zyrtec, Claritin, and Allegra. H2 blockers also block histamine, but in the stomach. These include typical antacid medications, like Zantac and Pepcid. So, to treat MCAD, you start with daily use of H1 and H2 blockers.
The thing is, I've been taking these for a while (since I've had an inkling that this might be part of my medical puzzle), and I was still seeing an increase in symptoms.
So, I often have to take Benadryl, an anti-histamine, to resolve a reaction I am having to a known or unknown trigger. Since this is happening more often, I decided that I need to start working on figuring out my specific triggers, and avoiding them when possible.
Every mast cell patient has different triggers, so it's important to try to find your individual triggers. Sometimes, it's obvious what has triggered me, like medication reactions. So, I need to avoid medications that have caused reactions. I have known reactions to medications like Morphine, Compazine, and a few others.
A huge mast cell trigger is fragrance. I have known of my sensitivity to strong fragrances, like air fresheners, perfumes, and hair sprays, for a long time. But I need to take these more seriously now, and avoid fragrances whenever I can. So, we're trying to switch over to fragrance free products.
An easy trigger for me to avoid is alcohol, since I've always known I've reacted negatively to alcohol, so I never drink.
The trickier triggers to figure out are food triggers. The most common triggers seem to be foods that are high in histamine, high in salicylates, or high in tyramine. This includes a lot of foods. I only need to identify which ones are my personal triggers, not actually eliminate every possible food. It's still a bit tricky. A strict elimination diet would be the most effective way to identify my triggers. I already eat a very regular and simple diet, so I should be able to figure out some of my triggers. One obvious group of foods is fermented foods. So, I have to give up my Greek yogurt. A couple other very high histamine foods are tomatoes, strawberries, and shellfish. I can avoid those pretty easily. The rest of it will be trial and error, which I'm working on now. Most trigger foods cause me to get an itchy nose and throat, so I am keeping a food diary and taking note of symptoms. I recently had a pretty dangerous reaction to a protein bar, with my throat getting all itchy and swollen, my airway constricting. Had to take Benadryl for that one.
Hopefully, this will be all it takes to reduce the frequency of mast cell degranulation, which actually increases your ability to tolerate small exposures.
If these measures don't work, there are plenty of other things to try. I'm am using NasalCrom, an OTC mast cell stabilizing nose spray, and Ketotifen opthalmic, an OTC mast cell stabilizing eye drop. If I need further help, I will have to see one of the few doctors willing to treat this disorder. Other potential treatments include: Singulair, GastroCrom, and Doxepin. A commonly used medication that is most effective at stabilizing mast cells in the whole body is Ketotifen oral, but it is not yet available in the US.
Okay, I know that's a ton of information. I've got a terrible headache. So, that's all for today. I know this is a ton of information. This is what I'm working on right now. I'll let you know how it works for me.
So, I guess I'll start with a subject I've been trying to avoid for at least a year now. It's only now that it seems I can't completely avoid it anymore. I may have another condition. No, I'm not diagnosis-hunting. It's just that there is another condition that is now being linked to the whole EDS/POTS/Chiari/CCI group. And I absolutely would not care for a second unless I were actually having symptoms right now, which unfortunately, I am. I also would not care unless there was a chance something could be done about this that would improve my level of functioning and quality of life.
That being said, the name of the condition is "Mast Cell Activation Disorder" or MCAD. I will add some informational links here soon. In the meantime, if you are looking for information, the disease functions very much like Mastocytosis. There is not much information on MCAD (also called MCAS for "Syndrome".) But it is still being treated. The current understanding is that MCAD is caused by over-reactivity of the mast cells to many benign triggers. If you've known me for a while, you know that I've had quite a few odd and even dangerous reactions to medications over the years. You may also know that my throat closes up whenever I'm around cigarette smoke. These could potentially be mast cell reactions. You know how I have had a variety of food intolerances over the years? These could potentially be mast cell reactions.
A seemingly insignificant part of my medical history is my allergies. As a child, I tested positive for every major allergen. During college, my allergy symptoms worsened, so I was retested, but found to have no true allergies. This would be an important part of my mast cell history.
If it were just these things, I still probably wouldn't look into this diagnosis, because who needs another diagnosis? But, mast cell reactions can also include: persistent fatigue, brain fog, headaches, tachycardia, sudden drops in blood pressure, fainting, cognitive impairment, vision problems, nausea, problems with anesthesia, decreased bone density, shortness of breath, temperature sensitivity, gastrointestinal pain, and bloating, If these symptoms are being caused by inappropriate degranulation of mast cells, treating these overactive mast cells could be an important part of my treatment.
There are a few easy treatments that doctors often try as a way to see if MCAD should be considered. If you respond positively to these treatments, you probably have some form of mast cell disorder.
The first treatment is with OTC Histamine blockers. H1 blockers include typical allergy medications, like Zyrtec, Claritin, and Allegra. H2 blockers also block histamine, but in the stomach. These include typical antacid medications, like Zantac and Pepcid. So, to treat MCAD, you start with daily use of H1 and H2 blockers.
The thing is, I've been taking these for a while (since I've had an inkling that this might be part of my medical puzzle), and I was still seeing an increase in symptoms.
So, I often have to take Benadryl, an anti-histamine, to resolve a reaction I am having to a known or unknown trigger. Since this is happening more often, I decided that I need to start working on figuring out my specific triggers, and avoiding them when possible.
Every mast cell patient has different triggers, so it's important to try to find your individual triggers. Sometimes, it's obvious what has triggered me, like medication reactions. So, I need to avoid medications that have caused reactions. I have known reactions to medications like Morphine, Compazine, and a few others.
A huge mast cell trigger is fragrance. I have known of my sensitivity to strong fragrances, like air fresheners, perfumes, and hair sprays, for a long time. But I need to take these more seriously now, and avoid fragrances whenever I can. So, we're trying to switch over to fragrance free products.
An easy trigger for me to avoid is alcohol, since I've always known I've reacted negatively to alcohol, so I never drink.
The trickier triggers to figure out are food triggers. The most common triggers seem to be foods that are high in histamine, high in salicylates, or high in tyramine. This includes a lot of foods. I only need to identify which ones are my personal triggers, not actually eliminate every possible food. It's still a bit tricky. A strict elimination diet would be the most effective way to identify my triggers. I already eat a very regular and simple diet, so I should be able to figure out some of my triggers. One obvious group of foods is fermented foods. So, I have to give up my Greek yogurt. A couple other very high histamine foods are tomatoes, strawberries, and shellfish. I can avoid those pretty easily. The rest of it will be trial and error, which I'm working on now. Most trigger foods cause me to get an itchy nose and throat, so I am keeping a food diary and taking note of symptoms. I recently had a pretty dangerous reaction to a protein bar, with my throat getting all itchy and swollen, my airway constricting. Had to take Benadryl for that one.
Hopefully, this will be all it takes to reduce the frequency of mast cell degranulation, which actually increases your ability to tolerate small exposures.
If these measures don't work, there are plenty of other things to try. I'm am using NasalCrom, an OTC mast cell stabilizing nose spray, and Ketotifen opthalmic, an OTC mast cell stabilizing eye drop. If I need further help, I will have to see one of the few doctors willing to treat this disorder. Other potential treatments include: Singulair, GastroCrom, and Doxepin. A commonly used medication that is most effective at stabilizing mast cells in the whole body is Ketotifen oral, but it is not yet available in the US.
Okay, I know that's a ton of information. I've got a terrible headache. So, that's all for today. I know this is a ton of information. This is what I'm working on right now. I'll let you know how it works for me.
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