The Reaction Chronicles

I’ve been adding a supplement or trying a drug or testing a food every few days for a while, holding off before and during my period and if I am reactionary. I have recently had some of the most violent side effects to some of the most innocuous substances and I still find it incomprehensible. In my old life — that old Elizabeth who started 10 supplements at full dose on the same day — I never would have believed that such a small amount of something “harmless” could cause such an extreme reaction. Most notably, ElectroMix electrolytes paradoxically causing extreme blood pressure crashes, D-ribose causing extreme blood sugar crashes and Dr. Yasko’s All In One vitamin causing such terrible bone and muscle pain and cramping from the waste down that I didn’t sleep for three days and was considering going to the hospital and begging for an epidural.

I wanted to chronicle these trials so I remember. Here are my notes from the last four months. No note means no discernible reaction.

  • 4/26/14: Started CoQ10 100mg
  • 4/23/14: Started Thorn Bio-gest
  • 4/20/14: Started Now Foods Yucca
  • 4/15/14: Started Prednisone (bad sleep, swollen hands and feet, grumpy, facial hair, very bad tachycarrdia)
  • 4/13/14: Started Thorne Riboflavin 5 phosphate
  • 4/12/14: Started 2 Fish oil capsules
  • 4/10/14: Started Calm magnesium + calcium
  • 4/3/14: Changed Zyrtec brand
  • 4/1/14: Started Dr. Yasko’s All In One vitamin (unimaginable pain from waste down in bones and muscles; spine muscles jumping; worst reaction ever)
  • 3/26/14: Started D-ribose (terrible BS crashes)
  • 3/25/14: Started Desonide cream and tried Valium (horrific headache, stuffy nose, SOB)
  • 3/24/14: Started Dr. Yasko’s digestive enzymes
  • 3/22/14: Tried Baclofen (bit of a headache)
  • 3/21/14: Started Molybdenum and Vivite face wash
  • 3/19/14: Started Finacea, Cereve face wash and clindamycin lotion.
  • 3/11/14: Tried Electromix (terrible BP crashes)
  • 3/8/14: Tried L-glutamine (sickest day in months)
  • 3/6/14: Started Jarrow Formulas Acetyl-l-carnitine
  • 3/5/14: Started Zyrtec
  • 2/27/14: Tried egg (very bad next day)
  • 2/26/14: Tried fish
  • 2/24/14: Tried avocado
  • 2/21/14: Started Zantac (terrible stomach pain and nausea)
  • 2/15/14: Tried gelatin again (helped sleep)
  • 2/14/14: Tried Valium (headache, stuffy nose)
  • 2/12/14: Tried Cannabis pill again
  • 2/5/14: Tried Thorn Medibulk
  • 2/4/14: Tried Benadryl for sleep and gelatin (hungover next day)
  • 2/2/14: Tried Tizanidine
  • 2/1/14: Tried egg, avocado and cannabis oil (very bad next day)
  • 1/26/14: Tried egg (itchy throat spot, very bad next day)
  • 1/20/14: Tried citrus
  • 1/5/14: Tried soy (bad headache)
  • 1/31/13: Tried Ativan (dopey, headache, bad the next day)
  • 12/24/13: Tried Trazodone again
  • 12/19/13: Tried Trazodone again
  • 12/16/13: Tried Trazodone
  • 12/12/13: Started PS
  • 12/6/13: Tried corn (next day bad bowel and headache)
  • 12/3/13: Started probiotics

Other reactions of notable mention:

April Memorial

Here’s what I want to memorialize today: My head is heavy and cloudy, but I don’t have a headache. My neck is stiff, but not sore. My muscles are weak, but they don’t hurt. My throat – this throat that has felt as if I have strep every day for a year, maybe two – is not sore and has not bothered me in a while. My mood is miraculously light. I may grimace, I may be grumpy and curse this wretched illness, but I haven’t felt sad or despairing in a long time. My period this month came as a quiet, rolly-polly visitor. It shifted and moved around some, as if trying to get comfortable, but didn’t bother me too much.

I worked on the computer today for a few hours, gathering info on doctors, clinics and tests, readying myself for the eventual disability application. I then stood in the kitchen for a while, washing and chopping vegetables and preparing some food. I was dizzy and slurry and weak, but, after lying down to meditate for a while, I was able to go the cemetery on my mobility scooter with the dogs and hubby.

Don’t get me wrong, my vision is still blurry, tinnitus is deafening, hair is falling out, voice is weak, energy is preternaturally low, and nighttimes are torturous battles with my ever-present sleep spectre… But. I’m getting stronger.

I waited a week to post this to see if I jinxed myself and the chronic illness gods would strike me down… I have taken a downturn in the last few days, but I still feel like a different person than I was over Christmas, so I’m posting it. Publicly proclaiming to all and sundry: there might, after all, be life after lifelessness. Universe, please don’t let this slip away.

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DIETS Part III: finding a balance in low-histamine and figuring out how to eat more meat.

Some of you have commented on how exhausting/frustrating/crazy this elimination diet process is and I agree! It is incredibly time-consuming considering the research into studies, the searching for recipes, the phone calls to grocery stores, the time my husband spends shopping, menu discussion, and cooking time…! Since none of my diet changes has made me feel any different, it seems like a futile process, but here is what I always keep in mind:

Some people, such as my brother, eat a paleo diet even though they are completely healthy ~ they just want to continue to feel great. Or feel even greater. Some people are diagnosed with a thyroid condition or an autoimmune illness and immediately change the way they eat, trying to ease symptoms or stop the progression of disease. I never even considered doing these things! I had one odd health issue after another and never changed a smidge about the way I eat. The doctors didn’t mention diet, so I didn’t think about it. I didn’t even research the things I was experiencing. This blows my mind more than anything. My time was fully committed to my job, there was no room for anything else. Plus, they were intermittent episodes (I thought) and I was still feeling fine (I thought), so everything was easy to ignore. I had given up alcohol, which, to me, was the ultimate sacrifice ~ do you think I would give up anything else? No way!

One of the best gifts I was given was my OBGYN off-handedly saying, “You should eat some salt if you feel like you are going to collapse.” Uuuuhhh…? Why didn’t I know that? I’d been limiting my salt for years because I thought it contributed to the swelling. Couldn’t just one of the many nurses that have taken my blood pressure over the years mentioned salt to me? They always comment on how low it is and I always let them know I get dizzy. “Try increasing salt.” Just that simple.

The other thing I always keep in mind is my dog, Bowie. When he was young, he developed bumps on his skin. The vet thought it might be a food allergy, so we changed him to a limited-ingredient diet. Over the next year -maybe two- his skin got worse and worse. We changed his shampoo, we washed him more, we washed him less, we gave him supplements, he was put on Benadryl. His coat is a beautiful, deep, glossy brown; he looks like a stallion. But the bumps got bigger, his skin was like braille, and his skin started to have a distinctive infected smell.

Then, one day in the dog park, there was a hand-written sign tacked to a post: “Natural Balance food is killing dogs!” It had some other info on the sign that I can’t remember, but there was nothing online that we could find. Regardless, we paid attention because that’s the brand our dogs ate. And then a miracle: Literally, a few days after we switched their food, we had two puppies back in our house. We didn’t even realise that their happiness and activity level wasn’t normal for them because that’s all we knew for so long. They were DANCING. They were LAUGHING. They were running around like we had just removed their shackles. And then Bowie’s skin made a total turnaround: The bumps and smell disappeared incredibly quickly. We were very grateful, but my heart was broken over the poison we had been feeding them. If anyone had witnessed the change, they would know the radical difference food can make to health.

Lastly, I never want to look back and regret not trying diet changes. One would think that time ticks by slowly when you are sick and housebound, but, it turns out, the years speed by quicker than ever. I don’t want to be 50 or 60 and wish I had tried this in the beginning of my illness.

So, after 3 weeks of eating sort of low-histamine and a month of eating strictly low-histamine, I was not feeling any better. In fact, November and December were probably the worst months I’ve ever had, but I blamed that mostly on repercussions from the tilt table test and IV fluids reaction. I’m sure the stress around a new way of eating and hypoglycemia didn’t help matters, though, so I allowed in some histamine foods (bananas, berries, lemon, some vinegar, all greens, all meat), but I have continued to avoid the biggies (fish, spinach, tomatoes, eggplant, pickled/fermented foods, dried fruit, leftover animal protein). I needed to increase my protein intake to stabilise my blood sugar and started force-feeding myself meat. It was joyless, like taking medication. I am eating this chicken so my blood sugar does not tank in the night… (picture me sitting in bed, eyes closed, slack-jawed chewing a piece of cold, dry meat, grimacing as I swallow).

Around the same time, I eliminated oats ~ the only grain I had never lived without and had, in fact, been eating every day in the form of granola/porridge and oat crackers ~ and that left me desperate for breakfast options that included protein. Beef breakfast patties became a staple. We started investigating all the butchers in our area and my husband talked to all the grocery stores. We figured out when deliveries come in, whether they are fresh or frozen, how long since the date of slaughter, and we buy grass-fed, pastured beef and lamb, organic chicken and turkey, trying to source the healthiest and freshest meat to continue keeping histamine in check. My husband cooks the day we buy meat and then we freeze portions so I have meals at the ready. He still makes beef bone broth and chicken stock, but we cook it in a shorter amount of time and freeze it in silicone ice cube trays and jars. Beef patties for breakfast. Lamb shepard’s pie, portions wrapped in wax paper. Chicken and turkey breasts that can be thrown in soup or chopped on a salad or served with rice pasta and topped with veg and sauce (see FOOD! page for some recipes). Blood sugar crashes became much rarer.

Frozen broth

Frozen broth

My weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
artichokes (contain quercetin, luteolin and rutin);
sweet potato (anti-inflammatory, contains rutin and quercetin) and butternut squash latke (antihistamine, anti-ulcer, anti-inflammatory and antidepressant action);
pomegranate (mast cell stabiliser, anti-inflammatory).
**Info from thelowhistaminechef.com**

Another weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
sauteed with spiralized zucchini (has anti-inflammatory, anti-ulcerogenic and potentially antihistaminic properties);
cauliflower (contains anti-inflammatory vitamin K) and sweet potato cake (anti-inflammatory, contains rutin and quercetin);
apple sauce.
**Info from thelowhistaminechef.com**

I started to feel a bit better overall in late January, right after my bad pre-syncope episode during my period and right after I quit oats. By “better”, I mean back to where I was around September/October of last year. Able to walk 800-1000 steps a day instead of 500, my daily headache got better. But still not going into the garden, not stretching, not able to talk very much. One amazing change is my heart rate has gotten much lower overall ~ almost too low. In the 70s and 80s when I am standing up, not moving. Mid-50s sitting, watching tv. Low-50s and high-40s sometimes, while lying down in bed.

I refuse to believe that eliminating oats made the change.
A) Because I love oats too much and can’t wait to eat them again. I HATE savoury breakfasts. Hate them. Make me sick and nauseous. I was the one going to the Irish pub for a Sunday fry with my family and ordering porridge or fruit, yogurt and toast. Every morning is a struggle. It has gotten easier, but it’s not enjoyable. I don’t want acorn squash and beef and kale for breakfast and I never, ever will. It’s one of the reasons I have continued to search for “baked goods” recipes and kept rice in my diet (so I can have rice cereal or rice toast, if I like).
B) Because nothing can ever be definitive in such a changeable, cyclical disease. I also stopped taking my B-complex around the same time. That could have been causing my headache everyday!

Banana-Zucchini muffins: click image for recipe

Banana-Zucchini muffins: click image for recipe

In the final diet post, I will discuss AIP (autoimmune paleo diet) and all the other complications and sensitivities one comes across when researching online. It’s enough to send anyone straight to the nearest fully gluten-ized and dairy-fied bakery.

Jingle Jangle

Whatever you did, it worked. Your thoughts, requests, and prayers lifted the beast a little and on December 27th, I was given just enough space to let in the laughter and joy. Pain eased up and, just like that, I was smiling all day long and excited for what 2014 might bring. It didn’t last much more than a day or two, but that was enough. So, to all of you that commented or liked or sent a bit of changing energy out into the universe, THANK YOU! I was given some relief, some perspective and hope for the future.

AND I managed half an hour outside:

Bowie in the Boneyard in December

Bowie in the Boneyard in December

 

Now. Ready? This is why I am going to get better. If you do nothing else today, watch the first five minutes of this video of Glen Hansard playing in Dublin this past summer. And then, if you only have five minutes more, fast forward to the 15-minute mark. I first saw them (The Frames) play in a pub when I was, I think, 17 and spent the next few years going to every gig I could. 23 years later, his music still fills me with an achy, wistful, electric desire to live this short life to the fullest. I will be back in Dublin one day.

Use good speakers. Turn it up- as much as you can tolerate. Dance with your kid -or your dog. Me? I just lie back, close my eyes and jingle jangle my feet a little. And smile. Happy Sunday. 🙂

IV Saline Experiment

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My doctor finally acquiesced to my pleas to try IV saline and see if it helped my symptoms at all. I really wanted to try it last month when I was going through such hell after the tilt table test (I still cannot believe how profound the payback was from what felt like a comparatively benign day of tests), but she wasn’t convinced it was a worthy experiment. It wasn’t until I sent her POTSgrrl’s post (thank you!), that she thought we could give it a try.

I scheduled the appointment for the day my period was due because that is typically when I am most incapacitated by ME symptoms. It was 6 hours from the time we left the house until we returned. I never expected such a long day. We did 2 full bags of saline over a little less than 3 hours (and it took 3 tries to get the IV line in. Twice, the nurse said, “Shoot, I blew the vein.” I didn’t know what “blew the vein” meant and I was lying down and couldn’t see my arm, so I had a panic about what complications would happen, how much blood was everywhere and whether we should continue. Once something is underway ~ a treatment, a plane trip, anything ~ I don’t fret at all, but, during the time when I can change my mind, I always start to second-guess my decision. Maybe I shouldn’t have asked for saline. Everything always goes wrong. Maybe two “blown” veins is the universe telling me this is a bad idea. Maybe I should stop it now and go home. But the nurse went and got a different person to put in the IV and she was quick and confident and, once it was done, my mind was at ease).

The worst part about the treatment was how cold I was. The room was freezing and I spent 4 hours in there covered in blankets, my heated vest (it has a battery pack), my coat, my scarf and gloves, my husband’s coat, a water bottle that my husband filled with hot water from the tap… It was ridiculous.

Below is the email I sent my doctor this morning. I wanted to post it here so I have a record of how this treatment helped. Or didn’t.

Hi Dr. XXX,

My BP was 96/63 originally, somewhat the same after 1 bag of saline and, after 1.5 bags, it had actually gone down to 88/XX. After we were finished, it was back to the 9X/6X range again.

The good repercussions:

  • My heart rate has been so low. WOW! Morning HR on Saturday and Sunday was 53/54 bpm and, sitting watching tv, my HR was mid- to high-50s. That’s about 15 bpm lower than usual. Activities that would normally put my HR above 110 bpms (such as walking up 6 stairs and getting in bed) were only causing me to go into the 80s. The effect lasted all weekend.
  • My BP was higher than normal Friday night (109/67), but went back down the next day.
  • My period came Saturday morning and was definitely easier than it has been in the past few months. Cramps were minimal and I didn’t feel dizzy, however my muscles were still very sore and achy.
  • My energy was not bad over the weekend. I took 1400 steps Saturday and Sunday, which is a lot for me.
  • I was able to wash my cpap on Saturday and go out on my scooter for 45 mins on Sunday, both of which would normally be too much on the first two days of my period.

The bad repercussions:

  • The most prominent difference is, although my HR has been low, my heart feels like it is “tripping” every so often (maybe 4 or 5 times an hour). This is brand new. It feels like a pitter-patter palpitation, like it skips a beat or speeds up for a second… When this happened, my HR was still low.
  • It was a 6-hour total excursion, which, for me, is unheard of. This had to have repercussions.
  • I felt terrible Friday night. Heavy, inflamed, wiped out.
  • My eyes swelled up A LOT after the saline, as did my fingers, my sinuses and what felt like my lungs (my breathing felt laboured).
  • The spot in my throat under my jaw that itches when I am having an allergic reaction has been very itchy since Saturday morning (saline? period? something I ate?).
  • I slept poorly Friday and Saturday nights and woke up too early both days.
  • I woke up this morning (Monday) feeling HORRIFIC. Much worse than any day in the past week. Completely wiped out, in pain, barely able to get out of bed. Feels like the flu (throat, muscles, head), but of course it’s not. I don’t know if it’s payback from the appointment and the weekend or what, but, if there were benefits from the saline, it looks like they are gone now. HR is back to being in the 70s when I’m sitting.

Thank you so much for being willing to try this experiment! I really, REALLY appreciate having someone in my corner.

I’m going back to bed for the day now because I feel worse than I have in weeks. But I’ll leave you with some scenes from my scooter-walk with my husband and pups ~ now the thing that gives me the most joy in my life.

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