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:
- Tramadol = bad headache
- Vicodin = very bad headache
- Codeine/hydrocodone = can’t breathe
- Gabapentin = great help with sleep for one week, constipation, vertigo, internal tremor, nightmares
- Melatonin = helps with sleep, nightmares
- LDN = no sleep
- Now Foods calcium citrate = worst headache of my life
- IV saline = nice low heart rate, anaphylactoid reaction
- Alcohol = anaphylaxis
Rag and Bone Shop of the Heart 
It’s such a crazy puzzle, isn’t it? In hospital, I tried a potassium pill, had an anaphylactic reaction!!! The IV Potassium- no problem at all. I have no idea which of the ‘fillers’ in the pill were the problem- there are SO many names, some of them have multiple names, it’s impossible to figure it all out- let alone predict what will and will not work or react. Add on the fact that the reactions come and go…and any day, anything could set you off, right? I couldn’t take Benadryl (even the injection) this January- I would get a full blown anaphylaxis. Now, I can take it without any problem (but I save it for when I really, really need it.)
Hang in there, and keep writing things down. I find I really have to keep thinking ‘do I NEED this, is it working as it should?’, if not, then out it goes! I wonder how much $ I’ve wasted on drugs and supplements that I react to, or that haven’t worked like they were supposed to!
Remember that as ‘weird’ as your doctors say you are, you aren’t alone.
Karen
PS- My new pain doc said to take magnesium but NOT calcium, as magnesium helps, but calcium can add to neuropathic pain…I haven’t done any additional research though.
PPS- anything with a gel-cap is out for me- how about you?
LikeLike
Oh, Karen, anaphylaxis to a potassium pill is terrifying! Living life like that gives you PTSD. I seem to be ok with capsules. I just started calm magnesium with calcium, which seems to be ok when straight calcium powder gave me the worst headache of my life. I have osteopenia and get very little calcium in my diet, so I do like the idea of supplementing a little bit. My pain hasn’t gotten worse, thankfully.
Btw, I can’t remember your password! You can email me if you don’t want to post it on here. 🙂
LikeLike
I’ve been on Gabapentin since the brain surgeries. I wonder if I stopped it I might feel different. But…….I need to not get massive headaches like I had. 🙂
LikeLike
Gabapentin was one of the few drugs I did ok on, but I never got above 200mg. Headaches suck all life out of what life we have, so I would do anything to avoid them!
LikeLike
Wow! I’m at 800 and trying like crazy to get my neurologist to lower the dose. He’s not wanting to budge much. 🙂
LikeLike
You are not alone. I have reactions to all kinds of things!
LikeLike
I’m sorry you do… but I’m happy I’m not alone with this freakish body. Hope you’re going ok, S! X
LikeLike
Such a brilliant idea to write it all down – I so wish I’d done that over the years. I wish there was a doctor or researcher or gvt department somewhere that we could all write to and who would start collating this info – no-one believes I can react to just about everything and I thought I was totally alone until I looked into mast cell disease and found others who were just like me. In fact, I might look into whether I can do some sort of survey on my blog that people can fill in and when I get enough info I’ll look into reporting it to the CDC or UK health department or something!
LikeLike
That’s such a fantastic idea. The only way I figured out that the electrolytes were causing my blood pressure crashes were because Yasmina (the low-histamine chef) mentioned it and it was like a lightbulb- it was the only thing I was doing different. I would never have believed it.
I haven’t been keeping track up until now, unfortunately. A friend shared her list of reactions that she had written down for doctors and I thought, I have to have that! I’ve tried so many benzos for sleep and I just know I decided against them, but I couldn’t remember WHY. You always think you’ll remember, but never do… xo
LikeLike
It helps me to know I’m not the only one who has reactions to so many things!
LikeLiked by 1 person