I had my first allergic reaction to a drug when I was 17. I had severe gastroenteritis and was prescribed an anti-emetic (ie. an anti-nausea) drug called Stemetil. The active ingredient in Stemetil is prochlorperazine. Prochlorperazine belongs to a group of drugs called phenothiazines which act on D2 dopamine receptors in the brain. Dystonic allergic reactions, whereby the muscles jerk and move incontrollably, are a well known side-effect of phenothiazines, including an allergic reaction called an Oculogyric Crisis, which is what I had to Stemetil. I was told never to take other drugs in the phenothiazine family (eg. Motillium for constipation, other anti-emetics like Maxolon and, when I was elderly, anti-psychotics for dementia symptoms). I’ve since also learned that the anti-histamines Methdilazin, Promethazine and Trimeprazine also belong to this family of drugs. And in addition, in 2012 the American FDA added the anti-histamine cetirizine (brand names Zyrtec & Reactine) the the Drugs to Watch List for oculogyric crisis (Zyrtec is often prescribed as a first drug to treat Mast Cell Activation Disorder!).
Apart from phenothiazines I took any number of medications like cold & flu remedies, Paracetomol & Ibuprofen, Mefanemic Acid for period pain, the contraceptive pill, travel sickness tablets, laxatives (eg. Senacot), antibiotics for repeated throat and chest infections, and drank my fair share of wine and cider! After contracting Myalgic Encephalomyelitis in 1994 I also took opiate pain killers (eg. Co-dydramol & codeine), the muscle relaxant Robaxin, hypnotic sleeping tablets (Welldorm, Zopiclone), anti-depressants for pain & insomnia (Dothiepin, Zispin) and tried hundreds of supplements (sublingual B12, L-carnitine, probiotics, fish oils, calcium/magnesium and dozens of others). The opiate pain-killers and muscle relaxant worked quite well for me in terms of helping pain, and I couldn’t get any sleep at all without both an anti-depressant and a sleeping tablet. There were drugs I tried which had intolerable side-effects such as awful nausea, but none I had any kind of allergic reaction to.
All that changed one Valentines Day in 1995 when my then boyfriend took me out of for a meal which included a lovely bottle of white wine. But within about 15 minutes of my first glass I started to feel really, really hot and when I mentioned this to my boyfriend he said my entire eye area had gone all red, swollen and puffy and I looked like I’d gone 10 rounds with Mike Tyson! The heat started to spread until I felt like I was going to internally combust, so I made my excuses and went outside into the freezing, wet, February night and lay on the rain-covered pavement to cool off – it was either that, or just pass straight out. I’ve never been able to touch alcohol (which is, bear in mind, a drug) since.
About 12 months later I tried a supplement from the health shop called GABA, an amino acid which occurs naturally in the brain and which was supposed to have a sedating effect and help me sleep (I was suffering horrendous insomnia from my M.E. at this point, but was initially reluctant to go down the sleeping tablet route). Taking this supplement was the beginning of my unconventional drug reactions and the symptoms were terrifying. About 20 minutes after taking the supplement I felt a huge headrush, then every single nerve end in my body flashed with white hot pain. Within seconds of this I felt like I’d been kicked in the chest by a horse (a huge ‘thump’) and my heart started to gallop, pounding so hard I thought it would burst right out of my chest. I could almost feel my blood pressure rising and my face and chest flushed bright red. Every muscle in my body felt like it was in spasm, particularly my back which was really painful. I also had what I term ‘brain cramps’ which is just how they felt – like getting leg cramp, but in my head (the pain was excruciating). Then the retching started – I wasn’t sick, but dry heaved for about 4 hours (I found out many reactions later that this was due to muscle spasms in my oesophagus). The anxiety I felt was horrendous – I’d never experienced anxiety before in my life (I’m fairly laid back as a person really), but this made me pace around the room like a lunatic for almost 2 hours. I had so much adrenalin flying round my body I couldn’t sit still for a second. The anxiety wasn’t mental or emotional, it was a physical thing my brain had zero control over. And then, by morning, the symptoms subsided and the fatigue set in – overwhelming fatigue and weakness where even thinking was beyond me and muscles so floppy I had to crawl to the loo. I thought the reaction was a one-off. I was wrong.
My next reaction to medication was again to a sleep supplement, this time to the popular Melatonin. During this reaction I had the head-rush, flushing and muscle spasms but not the tachycardia (eg. fast heart rate) or retching. But I had a new symptom: I felt like I was falling off a tall building, over and over and over again. Having the sensation that you are in free-fall when you’re lying in bed is very peculiar and it’s not a symptom I’ve ever had again (be thankful for small mercies Jak!).
Over the past 15 years I’ve now had the same reaction to literally dozens of medications and supplements, including drugs like Paracetomol (which I’ve taken without problems since I was an infant) and really innocuous substances like valerian, camomile and hops in a herbal tea drink. One day I’m taking a drug fine thank you very much, and then all out of the blue for absolutely no reason whatsoever I become allergic. The reactions aren’t dose dependent – I have exactly the same reaction to ¼ of a tablet as I do to a whole tablet, and once I’ve reacted to a drug I’ll never be able to take it again. Some reactions are milder than others. Some have been so severe I’ve been rushed to hospital by ambulance, my doctor worried that I was having a heart attack.
I’ve now reacted very badly to:
- GABA (GABA is abundant in tomatoes, which might explain my current reaction to anything containing tomatoes!)
- The herb Valarian
- The herb Lemon Balm
- Glutamine supplement
- The SSRI anti-depressant Prozac
- The tricyclic anti-depressants Amitriptylene, Dothiepin & Surmontil
- The NaSSA anti-depressant Zispin (mirtazapine)
- Any drug in the benzo family (eg. Diazepam, Temazepam, Nitrazepam)
- Hypnotics: Welldorm (chloral hydrate), Zolpidem, Zimovane (zopiclone)
- Melatonin supplement
- Paracetomol (I’m too scared to try Asprin or NSAIDs like Brufen!)
- Co-dydramol (codeine & paracetomol, pain killers)
- Robaxin (methocarbamol, a muscle relaxant)
- Lariam (mefloquine hydrochloride for malaria prevention)
- Immunovir (anti-viral)
- Senacot (laxative)
- Propranolol (beta blocker)
- An anti-histamine (but can’t remember which one, so I’m going to be petrified to try Ranitidine which is one of the first drugs given to patients with MCAD!!)
- Salbutamol (an inhaled steroid)
- Hypromellose eye drops for dry eyes (heaven knows what’s in there that I’m reacting to)
Anything which is sedating (like sleeping tablets, anti-depressants and opiate pain killers) give me the worst reaction, which has huge implications if I ever need surgery or anaesthesia. I also have all my dental work done without either local anaesthetic or pain relief (yes, even fillings!) – not that I’ve reacted to lidocaine before, but now I’m so allergic I’m not going to risk it unless I actually need a tooth pulled (even I draw the line at extraction au naturelle ;-).
The other bizarre thing about my drug reactions is that they’re not temporary. Most drugs leave your system in a few hours (in the case of pain killers) or at the most a few days (in the case of anti-depressants), but my drug reactions, once they get going, don’t stop. My worst reaction lasted 3 entire weeks. That’s 3 weeks of head pain, muscle spasms and permanent tachycardia (and therefore zero sleep), and permanent retching (and therefore no food and very little drink). Needless to say that particular reaction put me in hospital, where I was faced with disbelieving doctors and no help in any way. I’m really ill for several months after a big reaction, with severe exhaustion, muscle weakness, cognitive impairment and generally feeling so ill I think I’m dying. It’s no wonder, therefore, that trying any new drug now makes me very, very, nervous indeed.
Despite extensive online searches I haven’t found anyone anywhere in the world who reacts to drugs as extensively as me, or who reacts in the way I do. There are lots of people with MCAD who can’t take certain drugs, but none who are almost totally drug allergic. I don’t know whether to feel special, or very lonely!
Obviously I’ve sought medical help with my drug reactions, and gotten precisely no-where. My GP even told me not to tell anyone about my ‘brain cramp’ symptom because it made me sound like I was mental. My ME Specialist (who’s an Immunologist) said it was impossible to react to all drugs in the same way, ergo I was just having a panic attack. The Neurologist he referred me to for my migraines agreed and told me it was a “behavioural” issue. Even the Immunologist at my recent allergy appointment in Preston (who’s supposed to be a complex drug allergy specialist) dismissed my drug reactions as Multiple Chemical Sensitivity, when I don’t fit the profile for MCS in any way (I only react to drugs taken orally, not to any other chemicals like paint, perfume, cleaning products, etc).
I know for sure that my reactions are due to de-granulation of my mast cells, though I suspect mine are the histamine H3 receptors which affect the central and peripheral nervous systems, as well as neurotransmitters (including my friend GABA, oh yes!) and, as very little is yet known about H3 receptors, I can understand why my symptoms baffle most doctors.
The good news is I can still tolerate one type of antibiotic, Oxytetracyclene, which at least means I have some help if I develop an infection. The bad news is in April 2012 I started to have the same reaction to foods that I have to drugs, albeit a milder version. Now that really was terrifying – you can stop taking pills but you can’t stop eating. More on food (and other types of) reactions in a separate post.