Drug Reactions

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!)
  • Alcohol
  • 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.

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28 thoughts on “Drug Reactions

  1. Tobi

    I have had many reactions to medications… the crazy off the wall reactions i am not supposed to have. I can not take any opiates like tylenol with codeine and that is what they treat pain with… i am stuck with ibuprofen and that only helps. When I needed a antihistamine I went to the pharmacist and said what can i try? Reactine gave me the shakes and made me wicked paranoid and kept me up all night and didn’t work… i had been through all of the antihistamines i knew of… she brought me out a free sample pack of Aerius and that I have been able to take for years now… thank goodness! I save the benadryl for extreme reactions the aerius can’t handle.

    There are many of us EDS’rs out there.Please keep posting as it is always nice to connect with others that understand. Thanks so much for sharing so much of your life with us, Tobi

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    1. bertieandme Post author

      Hi Tobi.

      Thanks for taking the time to comment, I really appreciate it :-). Sorry you’re also plagued with drug reactions – it makes managing illness so hard doesn’t it? I can’t take any painkillers at all, and living with a painful disease like EDS without any relief can get me down sometimes I admit.

      I’m glad you feel the blog is helpful and hope you are as well as possible today 🙂 .

      Jak x

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      1. Linda M

        Dear Jak,

        Have you ever tried coffee enemas? I have similar- but not as severe- reactions to food, drugs, and supplements.

        The coffee enemas have helped me begin to detoxify my liver and have improved my symptoms.
        (My primary symptoms are chronic unrelenting insomnia, tachycardia, and mucus congestion).

        Linda

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    2. luciduniverse

      Yes, I have a growing list of reactions to medications. I did not take medications for nearly 20 years due to reactions but did not know why I could not take them. So, after allergies and other medical issues became out of control, I tried the medical route. Tricyclics, SSRIs, SSNRs, Tramadol, some Antiepileptics, and others I cannot recall are on my list of reactions. Reactions from nausea to electric shocks to restless legs and dystonia are among my list of symptoms.

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  2. Stevie

    Jak, I have just discovered your blog and it is fascinating. We have a number of symptoms in common. Mine appear to have been brought on by a clash between an antidepressant and an osteoporosis drug, though I think the antidepressant (Seroxat) is the main culprit. I have reactions to drugs (every one I’ve taken since 2009), chemicals, exercise/movement, and recently most foods! The reactions are pretty similar in each case, as if my body is going into shock, culminating in violent uncontrollable muscular jerking as if I am having a fit. I noticed you mentioned myoclonus and I’m interested in knowing more about your experience of this. I rarely find examples of people with muscular jerking. Is it possible to correspond with you privately about this?

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    1. bertieandme Post author

      Hi Stevie

      So sorry to hear you also have weird and extreme drug reactions. I’m particularly tired today as I’ve been into town clothes shopping (first time in 2 years!), but will email you in a day or two if that’s OK.

      Jak

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    2. luciduniverse

      Right, about the recently most foods, that has been happening to me too. The list of foods I cannot eat has been growing over the past 7 years.

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  3. luciduniverse

    All I can say is this: Wow!
    I have been trying to figure out, research and understand a lot of my health issues since I was a teenager, circa 80s. My childhood diet was very good considering my extended local family grew most of the fruit and vegatables we ate. We did not have much processed foods because one of my grandfathers was diabetic. I seemed healthy as a bug in a rug. But bone breaks, sprains, rotator cuff tears, joint subluxations in sports and later without sports, and then after 20 years of not even taking aspirins but dealing with chronic pain, I had sever reactions to most of the medications the doctors tried… some causing dystonia, thankfully acute not tardive. And, the last several years… foods. My safe foods are water and coffee. After that, I can have allergic reactions, even anaphylaxis. I had an anaphylactic episode while trialing the gluten free diet last fall. I am really grateful you posted all this. My doctors have been treating me like I am crazy but I cannot take any psych meds, haha, due to the severity of dystonic reactions. I can take nothing with seratonin or tricyclics. I found this blog because my allergist explained to me that Tryptase might be causing the food allergy episodes and I am still getting test results back from gi tract biopsy and will be taking some more allergy tests. I have anaphylaxis walking near or driving with windows open through areas where grasses that are pollinating. I have an allergy/asthma medication for each type of reactive area–eyes (ketofin), nose (everything but flutocinase), skin (diphenadydramine), headaches (cyproheptadine), lungs (albuterol, monolukast). I get sensitive in the shower and in the cold and weather changes. My ex-long term partner called me, The Faberge Egg. It is really hard to maintain relationships even with other family who cannot understand or fathom why I look so healthy and cancel so many family gatherings. Thank you.

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    1. bertieandme Post author

      It sounds like you’re having a *really* rough time with your reactions – I feel for you so much 😦 In a way I hope your Tryptase comes back abnormal, because at least Mastocytosis is written about in literature and is much more understood than Mast Cell Activation Syndrome. But if your Tryptase does come back normal don’t despair – push for some MCAD testing (24 hr urinary nmethylhistamine, PD2, heparin etc) with a lab who knows how to handle this kind of testing (it’s *very* specific and you need to keep your urine chilled at all times). I have friends who have MCAD and react to nearly all foods, even those low in histamine. Some have been helped by taking Sodium Chromoglycate (Nalcrom/Gastrocrom) or Ketotifen but others couldn’t tolerate them.

      Being as though you’ve had joint subluxations etc. have you been tested for Ehlers-Danlos? If not it’d well be worth seeing a geneticist, as EDS and MCAD are linked.

      Good luck with it all,
      Jak x

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      1. luciduniverse

        Thanks Jak x. One issue I have is that I am a Veteran and I did not even have an Allergist until last year. I had to beg my doctor. But my old VA Medical Center, my doctor would have sent me but there were no Allergists. All I had was a Neurologist. I agree, I hope something shows up on the Tryptase. I do have a severe Grass Allergy and high Alternaria Allergy on the RAST as well as Mellons and a few other allergies which were less. My brother had allergy tests in the 70s and was allergic to everything, including his own skin. That is why my mom thought I was normal. I was the healthy one. I always had hives sitting on grass and melon allergy that I knew but never mentioned it to my mom because we were always taking my brother to the ER for severe asthma. Anyway, the VA does not seem to test for much unless it is a well-known disease or disorder.

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        1. luciduniverse

          I did not see a way to edit… I had been looking for a genetic link and found 23andMe last year. I did not get their tests and they are only giving raw SNP data now. Is there a resource list of doctors and labs who perform these tests privately?

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  4. Ten C

    Thankyou for writing this blog Jak! I, too, suffer allergies and sensitivities to so many drugs and foods, as does my youngest daughter. I am so sick of being put in the ‘too hard basket’ because my doctors have never had a patient so sensitive to medications. I’d love to get in touch with the rare few people in this world with similar problems, is there a support group for us?

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    1. bertieandme Post author

      Hi Ten C

      You’ll find we’re not rare at all – we just don’t get diagnosed! And, yes, there are support groups for people with mast cell issues. See:
      http://www.inspire.com/groups/rare-disease-and-genetic-conditions (international) Really good, informative group based largely in America.
      http://www.mastcelldisorders.wallack.us/yabb/YaBB.pl (international)
      https://groups.yahoo.com/neo/groups/OnlineTMSSupport/info (international)

      Hope this helps
      Jak x

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  5. Justine Railton

    just found your blog again today. don’t know if you are still updating it? I had a severe ‘episode’ this morning after two puffs of a new inhaled steroid. I think I had a dystonic storm, although the Dr thought I might have had a small stroke. The hospital said it wasn’t a stroke (over the phone with the GP) and that if I went in they wouldn’t do anything as its a weekend and to take some Aspirin. I have diagnosed MCAS so advising me to take Aspirin is crazy. What happened to me is this: within a minute or so of inhaling the drug my heart started pounding. Then I took my pulse and it was 110, so I went and told my husband that I thought I was reacting to this drug – he said to sit down and then I felt unbelievably sick. I sat down and started jerking – my arm and legs flinging wildly repeatedly. My head was shaking like a tremor and my mouth went into a spasm and it was drawn down tight at the side so that I couldn’t speak at all and was dribbling a little. It lasted about half an hour and then eased off. I was conscious throughout, but felt pretty weird. Afterwards I felt really tired and confused for a while. Now I feel more or less ok. Having weird reactions no matter what the dose also happens to me – I get steroid psychosis on only 5mg of prednisolone which the Dr thought was impossible! I also only need tiny amounts of drugs I do tolerate (which is very few) a teaspoon of codeine – prescribed to my 13 year old son after breaking his arm (he was supposed to take two teaspoons) made me sleep like I was unconscious for about 10 hours – I literally couldn’t open my eyes. 7 years ago the SSRI Citalopram caused really severe akasthesia that lasted over two years!!! (after only two doses). for nearly two years I had horrendous anxiety and couldn’t sit still. I have EDS III, MCAS, Lyme, Bartonella and M.E.

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    1. Jak Post author

      Hi Justine

      Yes, the blog is up to date – I try to post something every week, you’ll see my latest post if you click on the Home button in the menu.

      Your drug reaction sounds very familiar to me – I’ve had this type of seizure-like reaction to several drugs. I can also relate to your reactions lasting for ages – my record was 9 months, so can’t imagine what 2 years of symptoms was like for you 😦

      Even though I now have my Mast Cell diagnosis doctors still can’t get their heads round my drug reactions. They seem incapable of understanding I react to ALL drugs and to just not give me any. Of course, without drugs they are powerless to treat me and would actually rather give me a drug that makes me even more ill than do nothing :-/

      Jak x

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      1. Justine Railton

        Thanks for the reply Jak. I am struggling at the moment with needing dental work. I don’t mind doing fillings without anaesthetic, but unfortunately the last two teeth were too painful to be properly filled. Ive ended up with fluoride packing in them and then temporary fillings over the top. Yesterday we decided against trying a local (again) as its only a few weeks since the seizure after the inhaled steroid and 5 days since a probiotic caused severe intense itching that’s not yet settled 9weirdly I just get the itching, no rash). As I have Lyme as part of my M.E plus co infections its a real bummer as I cant treat them. I have been injecting gamma globulin once a week at very low dose and this has been fine, but last week I got a weird rush feeling through my whole body then a kind of a big BOOM feeling and thought I might pass out – I think it was a blood pressure reaction so I just lay with my feet up high for half an hour and it went away. Im hoping this doesn’t mean I have to stop this drug, which I have been tolerating up till now. What really gets me is how alone we are with this. My GP has NO advice re dental treatment. my dentist knows nothing about Mast cell reactions – basically it’s up to me if I want to risk it. I am a member of a few FB groups and forums where people are talking about healing from Lyme and co over time and people are full of suggestions, but what can you do when you cant tolerate drugs, herbs or a lot of supplements? it’s really tough, especially as the private consultant who diagnosed me with MCAS says it will probably resolve once I treat the underlying causes – so how exactly do I do that? No one knows…

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        1. Jak Post author

          I totally empathise Justine. I can tolerate virtually no drugs, herbs or supplements and the medical profession just don’t know how to deal with that.

          So far I’m lucky in that I’m fine with local anaesthetic – the issues for me start when I eat things and they enter my stomach, so I had a tooth extracted last year under local anaesthetic and it all went fine (apart from needing stitches and of course I can’t take painkillers so it was really sore for a couple of weeks).

          If I had Lyme there’s no way on earth I’d be able to do a Lyme protocol or take supplements, so I can relate to your frustration.

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  6. Lisa

    Can you tell me who your immunologist is that knows what chemical sensitivity, and who is immunologist/ ME doctor? Where is Preston? I am looking for doctors. I have all these problems too.
    Lisa

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  7. Erica

    I have so many reactions to meds! I was on the birth control mirena after having my daughter. All of a sudden it almost killed me and I couldn’t get anyone to listen to me. I had vertigo for 3 months bc I couldn’t get anyone to remove it!! I have a severe vertigo reaction from almost all meds! They gave me benadryl in the hosp for the vertogo by IV and it sent me into an emergency situation. They had to implememt er measures and flush my system. I had even more severe vertigo on top of the vertigo I already had, uncontrollable shaking (almost like I was cold but I wasn’t. They kept asking me to stop shaking bc they couldn’t get an accurate read on bp or ekg), severe nausea and that particular occassion I was there mentally but couldn’t move my body or call for help! I was scared to death I had had a stroke and was going to die. I eventually fell asleep or passed out and when I woke I felt better for a little while and then BAM! This happened before the mirena was removed. After the mirena was removed some of the symptoms lessened but never went away after that. Then I had a reaction to just a few sips of alcohol! Everything the same except for the not bwing able to move part. And I was EXTREMELY hot!! Felt like my whole body was on fire. That is the reaction I get to everything now! Same reaction with hydrocodone. The only med I have managed to take with no reaction was amoxicillin! Then my body started rejecting all food and even water! I couldnt eat or drink. Ended up in ER 3 times for this and they were no help. Gave me fluids and sent me home sayijg I needed to take nausea meds! No thank you! That’s not the issue! I would have all the normal symptoms from the food and water and an added symptom was I would be in literal pain!!! My stomach would have horrible sharp pains and long agonizing aching pains from one bite of food! I lost 30 lbs in less than a month. I almost died! Finally my husband pushed for me to drink ensures and that’s literally what I survived off of for a month! No food! It was awful! I eventually started trying chicken noodle soup and tolerated little by little more and more. But to this day there are foods I cannot eat at all! And the only drinks I can tolerate at all are water and gatorade. I drank hot chocolate once and that was the worst mistake I ever made! I didn’t even get through the whole cup! I started to be able to tolerate foods and water again after the mirena was finally removed. Fast forward to 1 1/2 yrs later. During all of this i had heart palpatations and at times thought I was having a heart attack. My dr did an ekg in her office once after the benadryl attack bc i had chest pain, pain in my left arm, palpatations and feeling like i was having adrenaline rushes but my heart didn’t always race. The ekg came back abnormal with a pulse of 50 beats per minute. Everything else normal. Sent to cardiologist who did an echo that came back normal and they refused to do anymore testing. (I’m female, was 26 at the time and tgey had already pegged me as being anxious. They tried to blame everything on anxiety which I had never had prior to being sick.) A yr later still having palpatations and chest pain but now they are worse. I’m almost passing out with them. My bp is 90/60 but of course they kept saying that wasn’t low but it actually is! Very low! Borderline too low! But now my pulse is way too high! Saw a new cardiologist who did a one day holter and said I had AT and started me on metropolol. Horrible reaction! Did the exact opposite for me! Couldn’t get him to return my calls. That was after only 1 dose so i stopped taking the med. About a wk later had an episode at work where my pulse was all over the place and i ended up admitted to hosp. Cardiologist (new) finally diagnosed me with POTS after a tilt table test. He wanted me on atenolol but I was too scared to take it. Good thing I didnt bc he said that would have been dangerous after he realized how low my bp were getting. He has now prescribed me corlanor. I still have yet to take it. Im too scared. He had me do a blood test for MCAD but it came back normal. I have other symptoms from time to time too. A weird rash always in the same place but it didn’t itch or spread. Stopped after i left my job. I have joints that swell up and become extremely painful out of nowhere for no real reason. And my eye will swell and hurt for no reason at all. I have no clue if I could have MCAD or not but this has def changed my life! Now hubby and I are debating having a second child but I’m scared! Idk what will happen and very scared of delivery. Don’t want a c section or epidural bc of my reactions but scared about being able to keep bp up, heart rate down, not passing out and tge severe fatugue and vertigo i suffer from from heat or anything strenuous at all. But i read where ppl have healthy babies and the moms are ok. I just feel like I have such severe reactions where most of them don’t. Ahhh!! Oh and I also suffer from IBS, had my gall bladder removed due to gallstones and bad gall bladder, still feel like I have ‘attacks’ sometimes even without it and am pretty sure I get blockages every now and then. I will be in severe abdominal pain and will vomit this putrid brown sludge and all kinds of undigested food and have horrible diarrhea. And even after i pass whatever sets it off i deal with symptoms for up to 2 wks after. Drs won’t take me seriously and keep saying it’s just a stomach bug. It is most certainly NOT a stomach bug!

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    1. Jak Post author

      Hi Erica

      I’m so sorry to read about your situation, which I’m sure is familiar to many of us. I saw various doctors for over a decade and none of them took my symptoms seriously. It’s worth having your MCAD tests done again, particularly at a time when you’re very reactive. My histamine test was technically “normal” though at the very high end of normal, so my consultant diagnosed “probable” MCAD based on my history and symptoms and reaction to anti-histamines. I sadly couldn’t afford to keep having the test repeated but I’m sure if I had I would eventually have tested positive.

      Jak x

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      1. Erica

        Thank you Jak! I’m sorry I’m seeing this so late. My cardiologist did my first test. Should I try to see an allergist or immunologist instead?

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        1. Jak Post author

          I don’t feel I can give advice Erica because I don’t know your situation and I’m just a patient like everyone else. There was a line in your comment which bothered me though – you said the cardialogist “did a blood test for MCAD” which came back normal. Testing for MCAD isn’t that simple – I wish it was. I’m assuming (but obviously I don’t know) that he tested for Tryptase. This is used to determine if you have Mastocytosis, not MCAD (they’re different diseases). Tryptase will always be normal in MCAD. Because it’s normal, most doctors will say you don’t have a mast cell disease because the only mast cell disease they’ve heard of is Mastocytosis – Mast Cell Activation Disorder is relatively new and the majority of doctors won’t know anything about it.

          If you want to get properly tested for MCAD, which involves measuring PD2, chromoglanin A, Heparin, Leukotrienes and Histamine (some of these tests involve having to collect your urine over a 24 hour period), you need to see an MCAD specialist. I live in the UK and don’t know any of the doctors in America but have a look at this link from the Inspire forum https://www.inspire.com/groups/rare-disease-and-genetic-conditions/discussion/mast-cell-help-1/

          Jak x

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  8. Lanie

    Jak x, I react to all medications, supplements, vitamins, certain foods that act like drugs in my body i.e herbs, preservatives, hidden antibiotics (antibiotics are the worst). I have had this my entire life but it definitely got way worse over the past ten years….probably due to peri-menopause and menopause. I would love to know if you were able to find anything to help with your MCAD symptoms? I too have felt very alone and avoided doctors most of my life because they are trained to dispense medications and i would always get sicker. Going the “natural” route didn’t help either because the supplements and “healthy food” made me sick. Would love to know if you were able to find anything that helped as many of the things you can tolerate food wise are the same as me. By the way, have you ever been tested for MTHFR…..all of this is related to Methylation.

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    1. Jak Post author

      Hi Lanie

      Really sorry to hear you’re in a similar position to me – it sucks! I continue to eat a “low histamine” diet (whatever that is!) which has helped my symptoms after eating and try to eat as many foods high in leutolin and quercetin as I can, as outlined in this post https://mastcellblog.wordpress.com/2015/06/05/flavanoids/

      I also control my environment as much as possible, ie not getting too tired, too hot or cold, getting too stressed etc. though no-one lives in a bubble and inevitably life can be tiring and stressful at times. I haven’t found any drugs I can tolerate, though I can’t afford to see a mast cell specialist so to be fair haven’t tried Ketotifen or Monteleucast or some of the other mast cell stabilizing meds. I am tolerating Sambucol, an elderberry extract with added Vitamin C which is supposed to be high in Quercetin though can’t say it’s having any effect. You could also try a Vitamin C supplement from non citrus sources. There’s also Dr Theo’s Neuroprotek http://algonot.com/product/neuroprotek/ which is tolerated by many MCAD patients, though I can’t afford it and would be too petrified to try it in any event! A lady who writes the menopause histamine website swears by olive oil, which should be fairly harmless if you want to try it https://themenopausehistamineconnection.wordpress.com/

      Other than that I just fly by the seat of my pants, which isn’t much help I know!

      Jak x

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      1. Lanie

        Thanks Jak. I just got a prescription for ketotifan but as I’m sure you can relate I am petrified to try it. I reacted to otc Allegra and Zyrtec and considering that I react to something as simple as rosemary or even lettuces (except romaine) I’m pretty confident it won’t work but I’ll let you know if I try. Oddly when I eat high quercitin foods like apples I react to that too. Allison Vickery interestly does not tolerate quercitan and I must be in that boat. She swears by glutathione. It’s almost like I have two conditions going on….one that needs medication to keep it stable (MCAD) and one that won’t let me tolerate any medications or foods that would be helpful to MCAD (unknown). Anyway it’s nice to know there is someone else in the same boat. I’ll keep in touch to let you know ketotifan proves helpful. Like you I have dealt with this most of my life and the only thing I know for sure is drugs make things worse for me:) The majority of your symptoms and reactions are almost identical to mine and fyi I have never had meningitis or ME so I believe the neurological stuff is drug/supplement and possibly mold reactions or all MCAD. Anyway got to just keep pushing forward and staying strong.
        Best to you for a healthy 2017! xo

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        1. Jak Post author

          Hi Lanie

          I can’t eat apples either, but it turned out to be nothing to do with their quercetin content – I’m actually allergic! I had skin prick testing done 6 years ago and had a reaction to Birch pollen – had no idea I was allergic to tree pollens. Apples are related to Birch, which is why they make my lips and oesophagus itch like mad!

          Let me know if you try the Ketotifen, though I totally understand if you don’t ever take it – I literally have a panic attack at the thought of trying a drug these days 😦

          Jak x

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