IV saline experiment… causes angioedema and histamine release.

I had a total meltdown yesterday. As my throat grew more swollen and I grew more alarmed, I finally put it together that I was experiencing an acute angioedema episode. I didn’t recognise what was going on because I usually get a swollen tongue and lips. On Friday, I chalked the edema up to fluid retention from the saline. The spot deep in my throat under my jaw that I mentioned in my last post always itches when I am having an allergic reaction – it’s the canary in the coalmine of my body – but I don’t pay attention to it as closely as I should. This was a slow cooking reaction: laboured breathing and swollen eyes, fingers and sinuses (stuffy nose) on Friday evening, itchy throat spot and heart skipping/arrhythmia started Saturday (both continue today, Tuesday), flushing/extreme overheating on Sunday, and throat closing on Monday, coupled with what felt like body edema – swollen bowel, abdomen, muscles…

Now I know throat closing/laryngeal swelling calls for me to use my Epipen, but, like I said, I didn’t cop on to what was happening until late in the game. Also, I would really have to be on death’s door to voluntarily inject myself with epinephrine. But I was very, very scared. Hence, the meltdown. I actually said to my husband, “Why can’t I just have a peanut allergy – something I can try to avoid?” I actually said, “Why can’t I JUST have M.E.?!” I don’t say those words lightly and, of course, if I could barter away my illnesses, ME would be the first one to go, but it is terrifying to feel like you have no control over anything and living with the threat of a fatal allergic reaction that can’t be identified is the ultimate loss of control.

I’m too tired to explain thoroughly and scientifically, but, basically, angioedema is the same mechanism in the body as urticaria, only in deeper tissues. If it happens in the tongue and throat and lungs, it can kill you. Often, as in my case, there are no identifiable triggers, so you just deal with it when it happens and hope it isn’t serious. It can present with urticaria or without and it can be as severe as anaphylaxis or very mild. If you want to learn more, Medscape has a very comprehensive set of articles (many tabs at the top with many pages per tab- just click on the next page at the bottom and you will go through them all). All of the better information on these types of conditions is relatively new. When I was diagnosed with idiopathic anaphylaxis 12 years ago, blood tests turned up no allergies, so the doctors washed their hands of me. That was it. When I suggested alcohol as a possible culprit, the doctor was disdainful and dismissive. When I mentioned that most times this happened was during my menstrual cycle, I was ignored. Here’s an Epipen, go away. Nobody knew about mast cell activation or histamine intolerance. And, of course, I was right! With my limited knowledge at the time of all things medical, I came up with the common denominators that made sense: booze, period, ibuprofen.

For an excellent article read this:
“The ingestion of histamine-rich food or of alcohol or drugs that release histamine or block DAO may provoke diarrhea, headache, rhinoconjunctival symptoms, asthma, hypotension, arrhythmia, urticaria, pruritus, flushing, and other conditions in patients with histamine intolerance.”

A few years ago, when I was diagnosed with autoimmune urticaria and angioedema and the doctor warned me (2 years too late) that people with this condition are more likely to have autoimmune thyroid disease, I asked him why the doctors years ago hadn’t looked into this autoimmune component. He said it was unknown then. He said it was something that only recently came to light. The only other thing he suggested was prophylactic treatment with Zyrtec, which I half-heartedly tried for a few months. No mention of H2 antihistamines or mast cell stabilizers. No mention of H3 or H4 or diamine oxidase. No discussion of mast cell activation, mastocytosis, histamine intolerance, low-histamine diet or any tests – whether reliable or not. No interest in looking into acquired angioedema, bradykinin-mediated angioedema or estrogen-dependent angioedema, all of which don’t respond to antihistamines. So, all of us – the patients – are scrambling along the edges of science. I feel like a surfer on an excruciatingly slow-moving wave. I come up with theories and do my own research and I see it mirrored in others’ blogs, but no doctors are accessible to help and no tests are robust enough to firmly diagnose.

For an excellent summary from another ME-afflicted blogger with mast cell problems (as well as EDS), read Jak’s blog: Mast Cells & Collagen Behaving Badly.

Which brings me back to my meltdown. For the most part it was a silent, immobile and tearless meltdown. I was simply frozen with fear. Saline probably caused a massive histamine release – right in the middle of my low-histamine diet experiment. I brought this situation on myself by requesting the saline. I had a reaction to an innocuous substance that is used to treat allergic reactions! Just like I had reactions to the antihistamines that are used to treat allergic reactions.

I can’t live with ME and angioedema and histamine/mast cell issues and sleep apnea and thyroid disease and crippling periods and a headache that never goes away and reactions to so many drugs!!

Fear of my throat closing more while I slept, fear of sleeping without my CPAP, fear of being woken up constantly by my CPAP, fear of taking an antihistamine, fear of not taking an antihistamine, fear of eating things that cause inflammation or histamine release, fear of losing more weight, fear of being on the pill, fear of having to weather my periods off the pill, fear of living the rest of my life in pain, fear of being in so much pain I have no choice but to take painkillers. What if I break a bone? What if I’m in a car accident? And then, swiftly on the heals of that thought, the fear that sent me into a tailspin: What if I have to go to the hospital? IV saline… IV painkillers… IV Benadryl… Contrast dye… Anesthesia… Surgery… What do I do when I’m older and I can’t avoid some procedure? When I break an already-osteoarthritic hip? What do I do if my body reacts to everything? I’m dead.

Fear of dying. Fear of living in this fear.

My answer to all of it was to throw caution to the wind and eat a bunch of forbidden histamine foods.

This is a perfect segue into part II of my diet post. I realise you are all on tenterhooks waiting to read it, but not yet, not yet.

_____________________________
The most recent article describing IA (idiopathic anaphylaxis), written by Karen Hsu Blatman and Leslie C. Grammer, explains the distinction this way:

Patients with IA-A experience urticaria or angioedema with upper airway compromise such as laryngeal edema, severe pharyngeal edema or massive tongue swelling without other signs of systemic anaphylaxis. Patients with IA-G suffer from urticaria or angioedema with bronchospasm, hypotension, syncope, or gastrointestinal symptoms with or without upper airway compromise. Reference.

Yes, I’ve used steroids.

Every time I try a new drug, I first get ready for the hospital. I have lived under the specter of anaphylaxis for 13 years and, in the last 2 years, the knowledge that many drugs – even ones I have taken often – can crush my lungs and shut down my airways. There’s also the fact that my autoimmune urticaria and angioedema manifests itself as tongue swelling. My allergist said, “Some people get hives, some people get puffy faces, unfortunately for you, your tongue swells and that can be life threatening.”

So, today, before spraying a new powdered corticosteroid up my nose, I ate something, drank a lot of water, locked the back door, made sure the dogs were inside, took off my pjs and put on black yoga pants and a sweatshirt (this is “dressed” in my world). I also put my phone by my purse and made sure my husband was reachable.

But let me back up. I saw an ENT doctor on Tuesday. I made an appointment on Monday with the only doctor near my house that had an opening. I really liked his bio on the hospital website, too, and I wasn’t disappointed – he was very nice and thorough. I drove myself, which was fine, but his office was down a very long hall and I was once again confronted with how hard it is to navigate the world as a disabled person. I walked that hall, but what if I couldn’t? What if eventually I can’t? You need a strong, able-bodied caregiver, a wheelchair and much more time.

I haven’t been using my CPAP for about a month (which wreaks havoc on my sleep and health) because my sinuses have been too swollen. A few weeks ago, I decided to try irrigating them with a saline solution, since everyone swears by this (I used the squeeze bottle instead of the neti pot). I felt water in my ears and it came out my mouth and eye (seriously!), as well as the other nostril. It was thoroughly unpleasant, but I persevered twice more – until the water in my ears was bad enough to stop my insisting it was healthy. Over the next week it grew more and more uncomfortable and I was forced to make the appointment after pain radiated into my eye socket and cheek and jaw bones.

The ENT doctor looked in my ears (no infection) and rummaged in my mouth and pressed on my jaw (TMJ problems, which I knew) and asked if he could spray a decongestant plus lidocaine in my nose. I explained my sensitivity to drugs and asked him if the outcome would change his course of treatment and he said probably not, but he’d like to scope my sinuses. I told him, Bring it on! We don’t need no stinkin’ lidocaine! One side was easy, the other was much more swollen and his wee camera had a tough time getting around the corners. At one point, I thought he might puncture my eyeball. That wasn’t too fun.

He offered a five day course of prednisone, which I declined and he offered to inject my sinuses with steroid, which I declined. He said the swelling seems to be allergy-related and said I should try different steroid sprays until I find one that doesn’t give me migraines and, if none of them worked, we could consider other options. So, off I went with 4 samples to research and worry about. I eliminated the steroid + antihistamine because there seemed to be a tendency to lose one’s sense of taste, I eliminated the spray with the highest incidence of headaches in the clinical trials and my final pick was based on user reviews. Of course steroid warnings are scary for someone like me: you can catch things easier because your immune system is suppressed; don’t take if you have adrenal insufficiency; it can make viral/bacterial/parasitic/fungal infections worse; tell your doctor if you’ve never had chicken pox or measles (I’ve had neither)… And then, of course, it can cause nose bleeds, holes in the septum, headaches, allergic reactions and anaphylaxis. Joy.

A few minutes ago, I sprayed Zetonna up my nose. Because it is a metered spray, I can’t try a small dose like I normally would. I use what the rest of the population uses: one spray up each nostril, once a day. At least with my antihistamine nasal spray, I only took one spray once a day when the adult dose was two sprays twice a day. So, I wait and hope that I have no instant hives or swelling, no trouble breathing in an hour or two, no rash tomorrow, no migraine in a week, and no virus or bronchitis in the months to come. Oh, and that it actually works and the swelling goes down and I can sleep and breathe properly again. Wish me luck.

Gratitude for the day: I got to see my big brother yesterday, who was here on a layover (he’s a pilot). I was shaky, hoarse, headachy, exhausted and couldn’t do much but recline on the couch while we visited for a few hours, but that was enough to raise my spirits and calm down my crazy, agitated, insomniac nervous system. Love you, bro!!

Doctor follow-up: symptoms, sleep, diet.

I haven’t taken vitamins or supplements in 19 days (except probiotics in the morning, magnesium at night and fish oil here and there). When I wasn’t sleeping, I decided to wash-out everything and, when I saw the Good Doctor last week, she wanted me to hold off on adding them back until I had challenged some foods. So, in the next month, I will be challenging soy and citrus, which I haven’t eaten in a month, and corn, dairy and eggs, which I haven’t eaten in a year. Honestly, I don’t know how I will identify symptoms ~ for no reason, sleep disappears and headaches hit me like a freight train. A few days ago I woke up with all over muscle pain: thick, heavy, stiff, achy, contracted muscles from tip to toe. I started waking up in the night again in a full-body tense stretch, jaw clamped down painfully, neck and back arched. It is coupled with daytime tiredness that stopped me writing, reading, talking… This wasn’t the bricked feeling of ATP running out in my cells, this was pure tired, like I was convalescing. It’s still with me today, but I want to write, so I force myself to sit at the computer.

I hate when old symptoms return. I thought perhaps spine pain and muscle aches were gone for good, but here I am with a new bottle of Tizanidine. I made a list of what could be causing it: Scooter? Adding back legumes? No supplements? Weather? Period? This week has also felt like awfully bad allergies, which shouldn’t be happening at the end of August. I actually had to take my inhaler and I couldn’t wear my cpap last night because my nose was plugged, even after multiple shots of antihistamine nasal spray. My headaches have mostly dissipated, only rearing up when I tweak my neck (which is about every other day; the nighttime muscle contractions don’t help), but I’m left with leaden cotton wool filling my skull and plugging my orifices. It feels like an orange on a toothpick, my neck too weak to hold the bobble head. I’m chalking it up to the weather. Seattle turned into a tropical rain forest this week. The temperature in my room is 74 degrees and the humidity is 74%. I keep saying, “It’s so close!” The only way to describe it.

Some good news: I’ve actually slept relatively well the last 7 nights ~ with only melatonin ~ which is miraculous. I have had a resurgence of mild night sweats for the first time in a very long time. But, we’re going to ignore that and the lack of deep sleep and concentrate on the positives: My current average hours of sleep, average time awake and average time to fall asleep:

An average of 8.5 hours sleep? First time ever in my life!

An average of 8.5 hours sleep? First time ever in my life!

38 mins awake, on average,  when it used to be 2 hours!

38 mins awake, on average, when it used to be 2 hours!

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

Other things I talked about with the Good Doc: She doesn’t feel comfortable with prescribing saline IV infusions, she is thinking about digestive enzymes, she wants to get my vitmain D levels between 50 and 80 (they were 30 last March), and she doesn’t want to do a tryptase test to look for Mast Cell Activation Disorder (MCAD).

If anyone is interested in my elimination diet, she said she thought coconut sugar would be okay (I haven’t quit sugar yet; I’m a junkie) and she wanted me to avoid xanthan gum, guar gum and carageenan. This is virtually impossible using dairy-free products, so I’m not taking it too seriously. My husband spent half an hour in Whole Foods reading the labels of nut and coconut milks: if you want to avoid sugar, cane juice and soy lecithin, you won’t be able to avoid carageenan (if anyone has more info, please tell me!). The best bet seems to be Pacific Almond Milk (which has carageenan and “natural flavor”) and Rice Dream, if you don’t mind the calorie and sugar content (I love the taste, but it’s high-glycemic load causes my blood sugar to crash).

She also wanted me to watch the teas I drink, since this is the only thing I drink besides water. You can get all the info about teas from this FoodBabe blog. Basically, I am trying to stick with Numi, Traditional Medicinals, Rishi (which is even more expensive than the other expensive organic teas) and maybe Choice. I splurged and bought this yesterday: Rishi Turmeric Ginger Loose Leaf Tea ~ how good does that sound for what ails me?! (I reckon, in the good ol’ days, I would have spent about that much on one cocktail, including tip, so I deserve it. I ignored the voice that said, Uh, you have no income.)

Lastly, I saw my endocrinologist for my yearly check-up. He increased my Levothyroxine to 37.5mcg five days a week and 25mcg on the weekends and kept my liothyronine at 10mcg/day. He also thought I should see an immunologist. I didn’t even know they existed. Not that I think they could find anything… except maybe help with my MCAD theory (that’ll be another post).

That’s my update. In a few days, my Mother is coming from Ireland for THREE WEEKS to help us out and take a bit of the burden off my husband. One of my brothers is flying across the country to see me at the end of September and my other brother, the pilot, has a layover here the same week. It’s so exciting! Gratitude today, once again, is for my family. They continually help me, encourage me and remember me.

My beautiful niece sent me this card. :)

My beautiful niece sent me this card. 🙂

Tomorrow is International M.E. Awareness Day.

Tomorrow is International M.E. Awareness Day. There are many events happening around the world, both online and in person. You can google your area to see if there is anything going on, but what I ask is something simple:

Please make an effort this month to talk about this disease. Look for opportunities to raise awareness. Don’t worry about being a “downer” or bringing up an awkward, depressing subject. Let people know that there is an illness that stops life in its tracks and has no approved drug treatments and very little funding for research. Explain that this has nothing to do with laziness, depression, tiredness or burn-out. Explain that there are test abnormalities, but doctors aren’t taught about the (possible/probable) etiologies of this disease so most do not recognise it and certainly don’t know what to test for or how to treat it. Make it known that patients languish in their homes ~ or, more likely, a family member’s home ~ are passed from dismissive specialist to thieving charlatan and back again, use up all their resources, and usually reach a point where they are trying to just survive because it is too exhausting to research treatments and search for medical help. Warn people that ME is often accompanied by crippling neurological issues, autonomic dysfunction, new allergies and multiple chemical sensitivity (MCS), postural orthostatic tachycardia syndrome (POTS), chronic migraines, irritable bowel syndrome (IBS), fibromyalgia (FM), mast cell problems (MCAD), sleep dysfunction and, of course, the depression and anxiety that would be hard to avoid with a diagnosis like this. These are all debilitating conditions in their own right, so drawing awareness to them is just as valuable.

As with many awareness campaigns, ribbons are worn to show support – blue for ME/CFS, purple for FM, and green for MCS. What I like about this is, it might bring up the conversation. Most people recognise the pink ribbon representing breast cancer awareness or the yellow Livestrong wristband which supports cancer survivors, but perhaps you will encounter someone who asks, “What does the blue ribbon stand for?” And then you can launch into your educational lecture. 🙂

meribbon

A few things going on around the world:

Niagara Falls will be illuminated in blue tomorrow, May 12th, from 9:45-10:00pm EST to raise awareness to M.E. From 10:15-10:30pm EST the falls will be purple for fibromyalgia (FM) and from 11:00-11:15pm EST the falls will be green to draw attention to multiple chemical sensitivity (MCS). You can watch it on their live webcam. Or try: http://www.earthcam.com/canada/niagarafalls/

In London, there is the “All Fall Down for M.E.” protest outside the Houses of Parliament at the Old Palace Yard.

londonME

In Victoria, Australia at Melbourne University, there is an ME/CFS Educational Fun Run.

forME

Bob Miller is skydiving to promote ME research in Lodi, California.

The Irish ME/CFS Association is hosting four talks by Dr. Ros Vallings from New Zealand next week.

There are  five screenings of Voices from the Shadows across three continents in May.

Read this article by Mark at Phoenix Rising to get all the details about these events and many more.

Finally, consider writing to your local paper to raise awareness. Read this post by the ME/CFS Self-help Guru for inspiration.

Thank you to everyone in my life that has talked about this baffling illness, raising awareness one person at a time. Thanks to my father for talking to his staff about this disease and to my mother for talking to her dog park friends about it and to Z. and E. for explaining my situation to other people I know and to my husband for constantly making excuses for my absence, trying to educate others on what is going on and raging at medical professionals’ and society’s ignorance, allowing me to be angry by proxy since I don’t have the energy for it.

MEawareness

Allergies and all.

I wonder how much of how crappy I feel is from allergies. I wonder this all the time because I have never been able to accurately pinpoint my allergy “symptoms”. I don’t think I have any, but doctors continue to insist that I do. When I was a toddler, doctors did a whole slew of skin-prick tests and told my mother I was allergic to half the things on earth. I’ve seen the list: dogs, dust, insects, newspaper, hog hair (?!)… it goes on and on. Of course we ignored it and I don’t remember being plagued  by any allergy symptoms throughout my life (or maybe I was and it was “normal” to me, who knows?). Then, during a check-up about 5 years ago, a doctor told me I was “boggy” in my nasal cavities and said I should use Flonase to help with the symptoms, but I didn’t know anything different, so I never thought I had symptoms, so I never used the Flonase.

Then, after I fell ill with ME, I had some skin prick tests done again (searching, like so many of us do, for any answer to my problems). I was told I was allergic to dogs, cats, and dust mites. This time I took it marginally seriously and began the endless quest to kill dust mites (mattress, duvet and pillow covers, new allergy comforter, new latex pillow, wash bedding weekly in dust mite-killing detergent, HEPA air filter, UV and bright light, wet dust etc.) and started the lonely nights in bed without my pups to cuddle. Nothing about my symptoms changed. My ME/CFS symptoms, that is. Like I said, who even knows if I actually have symptoms to these supposed allergies at all? I don’t sneeze, I don’t itch ~ could my allergy symptoms simply be tiredness and a “bogginess” I never knew existed? “Yes,” the allergist said. “You will be able to breathe better and have so much more energy to play with your dogs, that you won’t mind not having them on the bed.” Never happened. Then I was tested for allergic reactions to trees, weeds, grasses, and molds.  I was allergic to all of it, especially alders and birch trees (see photos below).

birch tree reaction

birch tree reaction

alder tree reaction

alder tree reaction

Uh oh. There are birches all over our neighbourhood ~ we have one in our garden. There is an alder tree next door, looking over our yard. I looked up the current pollen count for our area: HIGH for trees, especially birch, alder and juniper.

Screenshot_2013-04-13-12-26-25What do I do with this information? I took a child dose of Zyrtec because I thought I should do something, but, as usual, I can’t really pinpoint symptoms. Yeah, my nose runs and my eyes feel … annoying… But, they don’t itch and I’m not sneezing and spluttering like those poor souls in the ads on tv. Should I be taking more antihistamines more often? Could it eventually help some of these allergic reactions I don’t even know I’m having? The doctor last year gave me Nasonex and oral steroids. They went in the drawer, unopened, of course. Maybe my allergic reaction would be more obvious if I went outside and rubbed my back up and down our birch, Baloo-style.

baloo - Edited

bare necessities

And I haven’t even started into the yes-you-have-food-allergies/no-don’t-trust-the-results arguments the doctors have when it comes to my positive blood antibody tests to tomatoes, cod and egg. I’ve always thought, if it’s not anaphylaxis, who cares? Unfortunately, with ME/CFS, it seems I HAVE TO care because reducing my body’s inflammation and stress hormones and toxins and oxidative stress and everything else that life throws at us is the only sure-fire way to feel better. Maybe Dr. Cheney was right when he joked that he’d like to be able to put patients in a coma to facilitate recovery ~ and, while he’s at it, how about we lie in a sterile bubble in a hermetically sealed room with no visitors, happy images fed into our subconscious, and nothing but anti-inflammatory glop in the feeding tube?

I’d rather curl up with my dogs (and the hogs) in the dirt and grass of the garden, under the shade of the alder, with a cold Mac & Jacks, and eat an omelet with some pico de gallo … and a cod and chips… with mayo and ketchup… fried in something other than coconut or olive oil… and live life. Allergies and all.