NOT Giving Up

Okay. So, I've had a rough week month year decade?  But the last few months have been especially hard due to digestive problems.  But my digestive problems are finally easing up a bit!!!  I'm finally eating 1500 calories every day!!!  Yes. This is huge. My pain level is better when I get enough calories. My energy level is better when I get enough calories. My migraine frequency is definitely reduced when I get enough calories. Plus, my mood is so much better when I get enough calories. Who'd have thought? Starvation is bad for you! I feel so much sympathy for my friends with severe Gastroparesis, IBD, or food intolerances that cannot get enough calories in a day.

Basically, I got myself into trouble with elimination diets and trying to identify my food triggers. I kept eliminating problem foods until I had almost nothing left. I tried to follow a low FODMAP diet for IBS. I was also following a low fiber, low fat, low residue diet for Gastroparesis. I also added the low histamine diet for suspected mast cell reactions. But when you don't eat enough food, Gastroparesis actually gets worse. Your stomach shrinks and slows down when it isn't constantly forced to handle more food.

So, I started a new plan of taking in calories once an hour throughout my 12-hour day. I alternated between liquids and solids, with pretty small portions. I added Naked Fruit Juice for extra calories. I found a meal replacement drink called Orgain that is pretty healthy, and full of liquid calories without a bunch of sugar and artificial chemicals. (You can buy it at Whole Foods or on Amazon. It's pretty tasty-but quite expensive.) And I've started baking more breads, muffins, and cookies.  This has really helped my digestion!

Finally, I'm starting to incorporate some fruits and vegetables. Applesauce is still the easiest and safest. But I've successfully eaten a few pears and small servings of tiny chopped broccoli. I've even been able to switch back to whole grains, little by little. It is not a great diet, but it's a start.

I almost forgot the strangest part about this! My weight has not changed. When I dropped down to 600 calories a day, I weighed 116 lbs. Now that I'm back to 1500-1600 calories a day, I weigh 116 lbs. Maybe this is why I didn't notice sooner how undernourished I was! My weight didn't drop at all. My clothes still fit. I don't know what to think of this. Calories in and calories out certainly do not determine my weight though. Just thought I'd throw this in there for others trying elimination diets. Just because you are maintaining your weight does NOT mean you are getting enough calories! Add them up and be sure you are getting enough to keep your body running. I use My Fitness Pal, an iPad app. Based on my age, weight, gender, activity level, and weight loss goals (maintenance), it determined I need about 1560 calories a day. If I burn calories with exercise, I need to make those up. It has really helped me.

I still eat mostly a soft foods and liquid diet. And I need to avoid high histamine foods, since I have such clear systemic reactions to those. But I usually can get my calories without the meal replacement drink. It takes a lot of effort and careful planning. I have to count my calories to be sure I hit my goal. But I can do it. YAY!!!

Okay...before we get carried away here, I have a lot of symptoms going on every day. My dysautonomia is still bad. I still have spells of reduced consciousness every day, and I still lose consciousness at times. The cerebral hypoperfusion is still such a huge problem for me. And my allergy/mast cell issues are still seeming to progress.

I am considering making an appointment at Rush in Chicago with their Allergy/Immunology department to see if they can evaluate and treat mast cell disease. But, due to my trauma related to doctors/hospitals/etc., I'm still putting it off. Testing could include a bone marrow biopsy, skin biopsies, and an endoscopy with biopsies. I would refuse those tests at this time.

Next week, I'm starting with a local allergist. I do not believe he will know anything about Mastocytosis or Mast Cell Activation Disorder. But, he should be able to test me for true IgE allergies, especially to dogs, since this is my biggest concern right now. Unfortunately, you're supposed to go seven days without antihistamines before the testing, and I have no idea how I will tolerate that. I'm currently taking Allegra, Zyrtec, Astepro, Nasalcrom, Benadryl, and sometimes Atarax every day. Yes, every day. More when I'm around Charlie. I have no idea how I will survive without them for even one day.

If I can survive until the testing, and I test positive, maybe I could start allergy shots (immunotherapy) to try to reduce my reactions to dogs. This would improve my quality of life so much, because I could live with my little Charlie again!!! Allergy shots would be a logistical nightmare, since you have to go in three times a week for six months...then once a week for three to five years. I usually cannot drive, and my hubby works, so this would be quite a challenge to figure out. Beyond that, the allergy shots themselves could trigger a mast cell reaction, in which case I wouldn't be able to tolerate them at all. But it's worth a try. Anything for Charlie.

On a totally different note, I haven't been able to start working yet. But, I have joined a book club! It meets once a month in the evening, so it's a very small commitment. I've only been once, but it is nice to get out and be around people.

I'll update after my appointment with the allergist next week. Thanks for caring enough to keep reading.

Giving Up

I can't handle this much longer. Everything is worse. My body is not working. I am mostly unable to digest food, with symptoms that seem to be from Gastroparesis.  I have constant nausea. When I actually do eat, I quickly have the sensation of being full and still hungry at the same time.

Apparently, I was only eating 600-800 calories a day in October, while trying to identify food sensitivities. This was causing my daily migraines. So, with much effort, I am now up to 1100-1200 calories a day (soft foods and liquids). The migraines are actually improved. Apparently, my body doesn't like to be starved. My goal would be to get about 1600 calories a day, but just getting to 1200 is so hard with such intense nausea and fullness.

Everything else is quite horrible. I won't be having any follow-up for this last surgery. After 2 months of being given the run-around, I've learned that a Skype appointment is not an option for some stupid reason. And believe me, I'm not up for traveling by any means. I can barely take care of myself at home.

I still struggle to remain conscious most days.

I am so traumatized by doctors, hospitals, procedures, tests, and surgeries that I honestly refuse to see a gastroenterologist for these newer issues. I truly believe there is nothing that any doctor in the world can do to help me with any of my problems, and that I just need to manage this on my own.

My system is just so sensitive and easily overwhelmed by everything. A lot of this seems like mast cell symptoms. But that's something else I will just manage on my own. I don't have access to mast cell stabilizers, but I can sure self-medicate with antihistamines as needed.

I am just done. I'm done looking for elusive answers and treatments that end up making things worse. I just can't tolerate anything. Pain meds, migraine meds...they all cause mast cell reactions. My mast cell reactions are just getting stronger and stronger. A single whiff of fragrance can take me out. My sensitivity to high-histamine foods is just getting worse and worse. It feels very progressive to me.

I just have to survive as best I can, and hope that my body heals itself. There are no magical answers out there. There is no surgery that can help me. There is no test or procedure I'm willing to go through at this time. I am not up for any type of travel, so most of the expert doctors are out of reach. Perhaps one day, I'll go back to Dr. Francomano in Baltimore, since she clearly understands the GI motility issues and mast cell problems associated with EDS.

I am getting worse in many ways. I don't know how to handle it. But I'm done fighting it. I'm going back to bed now. Hoping for some type of escape. The suffering is just so intense. The constant migraine is fighting to come back...I have to figure out what the heck I can eat. I wish I could be done.

Just Keep Swimming

I know I haven't posted in a couple of months. I also haven't been very communicative in general. I guess it's just that I know people like to hear good news. It's been a challenging time - some good times, but a whole lot of bad times. I'm dealing with quite a few issues every day, and coping as best as I can.

I'm having a lot of migraines. Almost half of my days are migraine days right now. I've already flunked out of a headache clinic (we tried every treatment available), so I have only Maxalt (a triptan) to treat my migraines. The Maxalt generally does help. I certainly can't skip the Maxalt too often, because the migraine blows up and becomes unmanageable if I don't take the Maxalt as early as possible. Unfortunately, it makes me feel very drugged. It also makes me incredibly itchy (possibly a mast cell reaction). So, I have to take 2 Benadryl to be able to tolerate the Maxalt. So, migraine days are generally lost days. Additionally, if I have more than three migraine days in a row, I just have to tough it out to avoid rebound migraines from the Maxalt use. (Today is a day three migraine, so I'm really hoping for a break tomorrow!)

Another issue that's been challenging is my allergy (suspected mast cell) issues. The main symptoms are itching and swelling. But sometimes, the itching is so bad that it keeps me from sleeping at night, and the lack of restorative sleep triggers my dysautonomia severely. I'm also reacting more strongly to all of my allergic triggers. Unfortunately, this seems to include my sweet puppy, Charlie. Plenty of other symptoms could be related to a mast cell activation disease, but for now, I'm just calling these allergies. Benadryl is becoming my best friend. I'm trying to avoid foods that are naturally high in histamine to lower my overall histamine load, but I can't tell if it's helping. (This includes fermented foods, strawberries, leftover meats, and a bunch of other foods.)

Challenge #3: My digestive tract is a mess. My main symptom is severe bloating and pain. My chronic constipation is improved, and I'm no longer dependent on Miralax. But the bloating and associated pain are still so severe. I've already tried things like fiber supplements, digestive enzymes, and probiotics, but they don't seem to do anything. So, I started a food and symptom diary to try to figure out what is making me sick. Unfortunately, it seems to be a lot of foods. So far, rice, almond milk, potatoes, and chicken seem to be my safest foods. I initially tried a diet I've tried in the past, the Eating for IBS diet, which involves eliminating foods that are high in insoluble fiber, egg yolks, dairy, red meat, and fatty foods. This hasn't been enough. Next, I have eliminated foods that are high in FODMAPs. If you don't know about FODMAPs, there is lots of information out there. It is a scientifically proven approach to treating IBS. FODMAPs include foods like: apples, onion, garlic, honey, agave, wheat, dairy, legumes, pears, cruciferous vegetables, artificial sweeteners, sugar alcohols, and a lot of other foods. They are foods that contain high levels of short-chain carbohydrates, like lactose, fructose, fructans, galactans, and polyols. I had a lot of hope for this diet, and gave it a really solid try. Unfortunately for me, FODMAPs elimination has not been enough to eliminate my symptoms. I really cannot tolerate any fruits or vegetables right now. The pain is too severe. I can sometimes handle half a banana or some cooked spinach (ew!). My diet is one of constant experimentation. I don't do well with smoothies, which is really disappointing. But I'm considering trying juicing. It isn't as healthy as smoothies, but all of the hard-to-digest fiber is removed from the food, and you still get the other vitamins and nutrients. I have no idea if this will work. Some days, it really doesn't matter what I eat. Even when I eat my safest diet, I can still have symptoms. I wish I could just stop eating. On the other hand, it's hard not to think: if even this bland, boring, generally not-too-healthy food is making me sick, why don't I just eat whatever I want?? But then, I'm reminded of past bowel obstructions, and I know I'm doing better than I would be if I were eating dairy, salads, and red meat. IBS symptoms can be caused by EDS. Malabsorption and motility issues are common with EDS or dysautonomia. But my motility seems to be okay if I avoid the worst dietary offenders.

I have a lot of other symptoms to manage on a daily basis. But these are the biggest ones right now. I'm also just trying to cope emotionally with my body's limitations. Many days are really so miserable that I just have to cope with my physical state. I often have widespread pain, nausea, shortness of breath, and a really intense feeling like having the flu (hard to describe). During these times, I just can't get comfortable, so I curl up in bed, put on some Netflix, and just wait for it to ease up. I missed out on my hubby's 30th birthday festivities due to this sickness. I hate it. I hate how much I have to miss out on. I miss my puppy. I miss my independence. I miss earning my own money. I just hate it. I hate being so self-involved due to this illness, and I wish I could be a better spouse, family member, and friend. I think we all thought I would be doing better by now.

The good news: many days, the sickness eases up in the evening, and I am able to enjoy myself a bit. I exercise every night, recumbent bike-riding and light toning exercises. I think it helps my POTS, but I still get out of breath just walking to the bathroom most mornings. I do believe that I have a successful bony fusion. I don't feel like I need to wear my collar, and I never need traction. My neck still gets tired and my muscles seize up with tension every day. I haven't had my post-op scans yet. Communication with TCI has been pretty bad. But I will find a way to get them done this calendar year. Like I said, I do believe that I am finally fully fused this time. My range of motion is actually reduced this time! I still use my bone stimulator every day, just to be sure.

Clearly, the fusion doesn't resolve everything. But I still expect that recovery from the trauma of surgery and the anesthesia will continue up to two years after surgery. I know that sounds crazy, but my body really does take a long time to recover.

The question that often comes up: what do you do all day? I have a lot of trouble answering this one. Basically, I just survive, and hope for better. I keep working toward a better life, even if it seems like I'm not getting anywhere.

I will be happy when I can live closer to my family. My life will be more meaningful if I can spend more time with my loved ones, the ones that support me through all of these years of illness. I am so very lucky to have these people, along with my amazingly supportive husband, in my life. In the meantime, I'll be here...just trying to do what's best for my body, and maintaining the hope that it may still get better.

Feeling Hopeless

I've had a few really great days over the summer.  They make me hopeful that the future could be brighter.

But right now, I feel completely hopeless.  I have been having frequent spells of low blood pressure that do not get better when I lie down.  My go-to medication for hypotension is Midodrine.  The last couple times, Midodrine actually made me worse.  It caused my heart rate to drop dangerously low, in addition to low blood pressure, which causes chest pains.  Now, I have nothing to go to when my blood pressure drops.  The spells usually come on after exercise or some type of activity.  They're usually later in the day, which is unusual for my POTS.  They aren't necessarily POTS-related.  I have lost consciousness quite a few times in the last week.  And it's not like you lose consciousness and then wake up dazed and confused a few seconds later.  These are prolonged episodes of unconciousness or near-unconsciousness.

If my sleep is not restful enough or my body is fighting any kind of infection, I can be in a stupor the entire day.

For this kind of low blood pressure, Florinef is commonly prescribed.  Unfortunately, it raises intracranial pressure and causes me massive headaches.

The only thing that can help me is Thermotabs and fluids.  All day, every day, I chug water.  For every 10 ounces of water, I take another Thermotab (buffered salt tablet).  This is about 12 a day right now.  Yes, I drink at least 120 ounces of water a day.  And over 2000 mg of sodium from pills.  It is all I have right now.

I contacted a nurse at Dr. Grubb's office.  She basically told me to not worry about it.  She reminded me that I have a chronic condition (Thanks!).  She said that IV fluids are not a good long term solution, especially in someone with EDS, cause your veins will all get blown.  She said to only go to the ER if I fall and hurt myself.  I don't, it comes on gradually. So, we just have to accept the spells of unconsciousness.

I cannot take anything else for my depression/anxiety, because I have had serotonin syndrome.  That's a dangerous, potentially fatal condition, so you really can't mess with it.

I am supposed to be raising a puppy and starting to teach piano lessons again.  I don't know when I'll be able to do that, because my condition is so unpredictable.  I don't want to turn away potential students that are inquiring about lessons, but I don't know what else to do.  We clearly need the money, but I cannot commit to anything in my current state.

I know that the overall lesson here is patience.  I know that my condition has highs and lows, and 5 months out of surgery, it should still be mostly lows for someone like me.  I just don't see the light at the end of the tunnel right now.  I have no idea how much better I will get, or how long it will take to get better.  This could be it.  I want to participate in my life, not just endure it.  And I want to be a better wife, family member, and friend.  I just have nothing to give right now.  The only thing I know that could help me get to that better state of health is exercise, but exercise makes me pass out.  I just can't stand being stuck like this.  I can't stand feeling so sick and with such a low level of functioning and a low level of consciousness.

It's really hard when your husband has to check and see if you're still breathing, because you look dead and are completely non-responsive.  And it's hard that no one can help me.  When I'm barely conscious, there's just nothing to do anymore.

These low blood pressure spells could potentially be a mast cell activation reaction, but I'm seriously getting nowhere with that diagnosis.

I still don't have a local doctor due to an insurance problem.  Not like some random PCP would have any idea what to do with me.  There is no help.  Just deal with it.

Sorry for writing when I'm so upset.  I know I'll get past this feeling.  I just needed to reach out a bit.  I know someone reading will relate to these feelings...and others will probably think I'm just a depressed nutcase that should get some therapy.  But in reality, these are just the ups and downs of living with chronic health problems.

5 months Post-op

I had my 2nd total cranio-cervical fusion reconstruction exactly 5 months ago today.  It is a very difficult surgery.  Since I have dysautonomia and suspected mast cell problems, recovery is very prolonged.  It's not fair to judge the success of a surgery based on symptoms at 5 months.  It's better to check at 12 months, maybe even later.  But I'll try to look objectively and see what may be better.

The last month has been challenging.  I was sick with an upper respiratory virus, causing a sinus infection and bronchitis.  For those two weeks, my POTS symptoms were out of control: high tachycardia, lots of shortness of breath, some spells of hypotension, lowered level of consciousness.  Then, I got one of my 4 day migraines.  Luckily, the virus and migraine were gone by August 2, the day we picked up our new puppy!  His name is Charlie.  He is a sweet little Cockapoo.  I'm not allergic to him!  I completely adore this little guy.  Unfortunately, after 4 nights of poor sleep due to the puppy's cries, my whole system shut down.  I couldn't stay conscious, my digestion went crazy, spells of very low blood pressure, tachycardia, shortness of breath, couldn't take care of myself, much less my beloved little Charlie.  So, after 5 days with us, Charlie moved in with my mom.  She and my stepdad are willing to take care of him until he grows up a bit and until I am a bit recovered.  But I really miss him!  I tear up just thinking about him.

The thing is, with all of these complications, my progress has definitely had a setback.  So, I'm rebuilding again...starting with sleeping as much as I can at night, resting as needed during the day, and exercising every single day, as much as I safely can.  My well-being depends on a very delicate balance of rest, exercise, diet, fluids, medications, stress, and most importantly, sleep.  98% of my focus is currently devoted to getting all of these things right, so that I can devote the other 2% to actually living.  Hopefully, this proportion will improve, and I'll be able to participate more in life and work again in time.

The symptoms I'm dealing with the most this week are:
-migraines
-tension headaches
-fatigue
-lowered consciousness
-loss of consciousness/passing out
-tachycardia
-spells of hypotension (not orthostatic)
-shortness of breath
-temperature dysregulation
-exercise intolerance
-body pain
-digestion (usually C, now more D--(friends with IBS will understand)

When things are so hard, it's difficult to see the improvements.  But they are there!  I'll do my best to think of some, as it is important to see the big picture in these difficult times.
-As of today, I do not need to wear the collar at all times.  Admittedly, I've been weaning for a few weeks.  I'll still be wearing the rigid collar in the car and a soft collar as needed for comfort.
-Excluding the muscle tension/tension headaches, I feel capable of going without the collar for reasonable periods of time.  This is a good sign that I have a solid fusion.
-My swallowing has actually gotten better.  I still have good days and bad days with swallowing, but I'm not getting extremely bloated nearly as often!
-I can sit up for longer periods of time.  For less pain, I generally like to sit on the couch so I can rest my head.  But it's still upright, which is better than before surgery!!!
-Before my setback, I think my overall level of functioning was improved from pre-surgery.  I just have to rebuild to get back to that.  Before the setback, I was able to: get dressed most days, leave the house for short trips most days, socialize for about an hour at a time, and do a fair amount of walking (I had reached 1.25 miles.)

My POTS is not better yet.  I'm not to the point where I was before surgery yet.  That will probably take the rest of this year, or more.  This means that I use the wheelchair at times, and I can't stand for long periods of time.  My aerobic endurance is still very low, but I'm working on it every day.

My headaches are not really better.  I either have a tension headache or a migraine (or both!) every day. Either one can be debilitating, although the migraine is most always debilitating.

I am very lucky to have a supportive family.  I also feel very grateful today for a wonderful primary care doctor back in Illinois, who is helping me get what I need through this transition to living in a new area.

Thanks for checking in with me!  Little by little, I'm coming back.  Sorry this post was a bit scattered.  I'm feeling a bit scattered today.  The migraine doesn't help either.

I heard a really great quote yesterday, so I'll post it here:
"Life is mostly froth and bubble; two things stand like stone: Kindness in another's trouble, courage in your own."
--Adam Lindsay Gordon

*I almost forgot: photos of Charlie!  Charlie is my reason to get better.  My motivation to exercise every day.  I want to be healthy enough to bring him home!

Sick and complaining

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.

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.