Post Reaction Stress Disorder

Anyone who has MCAD will understand the title of this blog post.  I refrained from using the term ‘Post Traumatic Stress Disorder’ because it’s a very serious mental health issue and I don’t have it, but I’m close.

I am phobic about taking drugs, or even trying new foods or drinks.  Truly phobic.  I only have to think about taking a drug and I get palpitations, my whole body feels weak, I feel nauseous and my anxiety level goes through the ceiling.  You might as well ask me to put my hand in a fire.  It’s become so bad that I have a panic attack giving drugs and supplements to my dog, even though he’s never had a bad reaction to anything in his life.

I had my first drug reaction when I was 16 years old, had my first truly allergic drug reaction when I was just 17 years old – y’know, the scary kind where you can’t breathe – and I’ve been having them ever since.  I’ve now had going on two dozen drug reactions and I don’t want another one in my life.  Ever.

The thing I can’t get anyone, including Doctors (particularly Doctors) to understand is that the reaction doesn’t stop when the drug (or whatever has caused the reaction) is out of my system.  Oh, how I wish it did.  My body instead seems to get stuck in the reaction and can stay there for days, weeks, months.  It makes sense when you think about it – mast cell activation perpetuates/causes further mast cell activation – round and round it goes until something breaks for the cycle, which for most people is Benedryl or steroids or other anti-histamine drugs but of course I’m allergic to all of those so breaking the cycle for me is nigh on impossible.

Just so’s my readers know, I will never try a drug, supplement, herb or treatment that you kindly recommend and which has helped you. I was bedridden for 3 months after trying osteopathy.  I had to be blue lighted to hospital via ambulance at 3am after one five minute chiropracty appointment and was so ill for the next 9 months I had to go live with my parents.  I pulled acupuncture needles out of my skin myself after the therapist left me alone for a 10 minute treatment and I could feel anaphylaxis coming on.  I spent the night (and the following 4 days) pacing the floor, puking and wanting to tear my skin off after drinking a cup of herbal tea containing hops and valarian.  And I haven’t even mentioned my drug reactions yet, which are so severe I honestly can’t bear to even write about them, or food (I’ve been trying to pluck up the courage to try a cup of camomile tea for about 2 years now and still haven’t managed it).

The blase attitude of Doctors to my drug reactions staggers me.  They write me a prescription then send me home, where I live alone miles from anywhere, to take the drug and have a potentially fatal anaphylactic reaction with no backup plan (I don’t even possess an epi pen and would be too terrified to use it in any event in case it made my reaction worse!).  It’s outrageous.  Any new drug I try should be done in hospital under medical supervision – anything else is negligent.

I am genuinely pleased when a drug, herb, supplement or treatment has helped one of my readers.  However, to tell me about it is a bit like saying to a man with a peanut allergy “peanuts cured me, you should try them”.  It’s kind’ve insensitive. If you’d been bitten by a dog 20 times you be pretty wary of dogs.  There will always be owners who come along and say “oh my dog is lovely, he’d never bite you”, so you trust them, go to stroke the dog and the little fucker bites your finger off.  The owner walks away muttering “well he’s never bitten me or anyone else I know!” like him biting you is somehow your fault and you’re the one left having to live with only 9 fingers.

I am the most drug allergic person I know probably anywhere in the world and by drugs I also mean herbs and supplements.  If I can react badly to eating an organic apple which is a totally natural product you can bet I can react badly to just about anything.

I don’t mean to sound whiney or ungrateful to the suggestions put forward by people who are only trying to be kind and helpful.  But I just wish sometimes there was a little more thought and understanding for my situation.  I want more than anything to improve my health – I’ve spent more than two decades trying to control my symptoms and everything I’ve tried (bar a low histamine diet) has made the situation ten times worse sometimes to the point of almost killing me.  I gave up stroking dogs, even those who are “friendly and wouldn’t hurt a fly” and now just keep a wary and sensible distance.

 

Advertisements

10 thoughts on “Post Reaction Stress Disorder

  1. Lisa

    I am in the same place you are. I have mast cell activation, and been diagnosed with celaics, hashimotos, sjogrens, connective tissues disease, Idiopathic enviromental illness, and many type IV skin allergies to chemicals, metals, organic things, in everything from dyes in clothes,and shoes, most all hygiene products, dental materials, foods, water, that leaves me in dibiltating skin dermatitis, and eczema, because I cannot avoid. I live my life in bed, with only silk sheets, and bedding. I can only drink distilled water. I also have real allergies to metals like cobalt which is also a natural mineral in the earth and is in all form of B-12, another allergy is chromium, which is a mineral, and titanium. These are found in most everything, even natural likes meats, vegetables, anything metal, like razors, utensils, textile dyes, concrete, etc, hundreds of things. I had patch testing done by dermatologists and patch tested postitive to about 15 chemicals and metals, and am covered in chronic dermatitis. I can sympathize with what you are dealing with.

    Like

    Reply
    1. Jak Post author

      Blimey Lisa, that’s just awful 😦 I can’t even imagine what living with that level of activation must be like. I’m lucky in comparison – I have total drug allergy and lots of food issues but other than that I do Ok with my limited exposure to chemicals and other environmental allergens. Yours must be an extremely isolated and difficult situation and my heart goes out to you. Jak x

      Like

      Reply
  2. Catherine

    I am so so sorry for adding more stress to your appalling daily, hourly suffering. I was someone who has added to that stress , so it’s no matter that I am in a similar boat. It was thoughtless of me. Catherine

    Like

    Reply
    1. Jak Post author

      If you suggested something for me to try Catherine I honestly can’t remember you doing it – that’s the great thing about having a terrible memory 😉 This post wasn’t meant to make anyone feel bad – I know everyone is only trying to help and be kind. It just seems like everyone else can tolerate at least *something* whereas I can’t seem to, which is rubbish for me because I’d love to do and take all the things other people do which have made them feel better. And I do get jealous that other people find things that help them, which is bad of me but I can’t help it! I was just having a whinge really – which I need to do now and again. Jak x

      Like

      Reply
      1. Catherine

        Dear Jak, you didn’t make me feel bad . I just hate that you are suffering , as in my own experience it’s hell on earth which we both seem to manage with huge creative genious mostly (as I am sure many others do too) Your blogs are so gutsy and speak the plain truth of what our days are like, yours with these damn syndromes. With almost no help at all and every encounter medically ,almost with out exception, being dangerous or maddening ( my experience anyway) Then it’s the utter sense of despair frankly as its not like I don’t get it. So when I read your post I was happy to say that I am sorry as I was doing exactly what drives me personally crackers so often. !!
        It’s really necessary for me to say it . This wretched lot of continuous challenges hasn’t yet taken my manners away !!
        I do not yet suffer from as well
        FMD
        OR
        IWWD
        (FOUL MOUTH DISORDER
        INTELLECTUAL WHITE WASHING DISORDER.)
        Close run thing sometimes though .
        Catherine

        Liked by 1 person

        Reply
  3. Erica

    I have that same phobia and have actually questioned, to myself of course, whether I have PTSD from my reactions to meds. My dad tells me it’s all in my head and I work myself up and make myself have these reactions but I know that isn’t true! Our relationship has been seriously damaged due to those comments. We really don’t talk anymore after that blow out. I’ve had drs tell me the same thing! Smh! My dad said “you can’t have the same reaction to everything! If you reacted that badly to all meds you will die!” Well no shit! Why do you think I’m so scared?! My daughter had to be put under for an mri (she’s 3) and I had a panic attack as well when they gave her her meds. I couldn’t even look! I’m new to your blog. I have POTS and my cardiologist thought MCAD too but he did some blood work that came back normal. I left another post on your drug reaction post. I couldn’t take the beta blockers and he now wants me to try corlanor…i still haven’t taken it. Its been almost a month ago he prescribed it. My husband gets frustrated with me bc i dont take meds. I suffer through migraines and other horrible headaches i get with my POTS bc I won’t even take Tylenol or Ibuprofen bc the reaction is worse than the headache. I get so pissed when ppl tell me to take meds for anything! My husband still does it to this day!! I automatically get angry and think have you heard nothing that i know I’ve told you 100 times?? I had an er dr tell me he refused to give me fluids when I was severely dehydrated (i hadn’t had fluids in 2 days bc my body was rejecting everything including water!) Bc i refused his nausea med! Well a nausea med is not a cure for anything! It’s an aid and not a necessity! I ended up getting the fluids but I didn’t get the whole bag and he rushed me out the door. That entire hosp trip lasted less than an hr! Shortest one I’ve ever had! I also apparently can’t bleach or dye my hair anymore or anyone elses. I can’t really clean with it either anymore. I’m terrifed to get a tattoo or a piercing bc I’m scared to death I will have a reaction! Certain smells will set me off and others won’t. Certain foods/drinks will also set me off. My reaction consists of my whole body getting severely hot like I’m literally on fire inside, severe vertigo, heart racing and palpatations, chest pain, nausea/vomiting and headaches! I will feel like im dying and like I’m having a stroke in really bad reactions! On a normal day I have light and heat sensitivity but I think that has more to do with my POTS but not sure. They gave me benadryl once for vertigo in the hosp and after about 30 seconds of it going into my IV I started reacting. My whole body was extremely hot, i started shaking uncontrollably like I was cold but I wasnt, heart rate went through the roof and into dangerous ranges, i felt like I was going to vomit but couldn’t and then my mind was working but I couldn’t move my body at all. I couldnt even talk or call out for help! I really thought I had stroked and I was going to die. They implemented er measures and started calling out codes and ended up flushing my system. I eventually fell asleep or passed out and they woke me up and sent me home like nothing had ever happened. They said my hr had come down and bp stabalized and made me wait in the waiting room sitting up when i really couldn’t for 30 mims waiting for someone to come get me bc they were ‘busy’. Same hosp where the dr refused me fluids. I will never go back there!! Anywho, I told myself that I would not take another med unless I was going to die without it. And I hadn’t until I got my Atrial Tachycardia diagnosis and then I was scared if I didn’t try I could die. Took metropolol. Horrible reaction to that that lasted a wk and landed me in the hosp with heart rates all over the place. I couldn’t gwt that cardiologist to even call me back! All of that was off of 1 pill! I only took half of the lowest possible dose too! Ended up staying overnight in the er where ai met the best dr I have ever seen. My now cardiologist. He diagnosed POTS with a tilt table test and listened to everything I had to say and have been through. He didn’t make me feel like I was crazy! I’m just scared to try the corlanor he prescribed and feel bad like I’m letting him down! Lol but after the blood testing coming back normal he didn’t think MCAD was something I had. But my husband and I were hoping to have our second child. I talked to a high risk ob who said I could still have kids with POTS. That they had ways of controlling my high hr and low bp with iv meds during labor and other meds would be available to me during pregnancy if I needed them. But I’m scared to death of taking any and of getting the epidural so I’m planning on an all natural birth. But the pain and labor im scared is going to make my hr go up, my bp down and the work of it all to extremely fatigue me where I can’t push. And I’m absolutely terrified of being put to sleep for a c section! Ahhh!!! So now I’m back to being scared! This/these illnesses has robbed me of so much I really don’t want it to take that away from me too! I was fine one day and the next deathly sick! It’s crazy!! Sorry I rambled so much! I tend to when I find other people that understand! But thanks for listening!!

    Liked by 1 person

    Reply
  4. Cristina

    I’ve been following your blog for quite a while, but never commented before. My reactions are not as severe as yours, but I have that same fear – even the thought of a new food, supplement, or experience is enough to induce a panic attack. Unless you’ve been there you just can’t understand.

    What has helped me a great deal is Tapas Acupressure Technique (TAT). It only takes a light touch in a couple places on your face and back of your head, identifying what you want to heal, and putting your attention on specific phrases for a short time. It seems too simple to work, but I’ve tried so many things and this works for me. I’ve been doing it almost daily for a few weeks, I can see and feel a huge difference in my thoughts, feelings and physical reactions. Like anything, it’s a process that takes some time. I truly wish you well, I believe there is always hope.

    Liked by 1 person

    Reply
  5. Karen, The Walking Allergy

    Jak, I completely understand. I haven’t had a panic attack in years. (I had PTSD from an auto oblige accident when my son was 8 weeks old. Not fun.). I had one the other day when one hospital said I needed to go to my local hospital, where, well, you know a bit of it. That’s just the tip I’d the iceberg. My training from when I had PTSD treatment kicked in, and I calmed immediately. I saw this guy in person, but just learning the technique might help. It sound completely bonkers, but it works. It’s a series of movement and touch on acupressure points on your hands. I can’t remember it, but because I practiced so much, now I just have to think of it, and ‘click’, panic goes. His name his Lee Poulos if you’re curious. (Total aside- my autocorrect went back and changed the correct you’re to your- seriously?).

    Having been diagnosed with PTSD in the past, I think that PTSD is an entirely appropriate description for post-serious reaction. It’s scary as hell. Add in a component where somebody either refuses, delays or denies treatment, and that is intensely traumatic. A bad reaction after accupunture, same idea (by the way, not leaving a way for you to get a hold of her was astonishingly negligent of her. I’ve had a fair amount of acupuncture, and they always leave a little bell, or even have a call system in place.)

    As you know, I’m a tank when it comes to meds. I always have to take higher doses than anybody expects. But I react to some of the stupidest things- got a different size bag of saline yesterday. It has this blue tip that you yank off to put the IV line in. It burned my fingers, and I couldn’t tolerate the saline. I don’t know what it was made of yet, but it’s SO frustrating.

    By the way- I might suggest you skip the camomile tea, ok? Camomile is in the daisy family- one of the most common pollen allergies. The smell of camomile tea sends me into ana… What about rose hip or roibos? Roses are one of the few things that I can smell without reacting; it’s a much less common allergy than daisy. Rose hip tea is super high in vitamin C, (roibus is too, as I recall). Pop into your local ‘wildish’ space- pick a wild rose and a wild daisy, or even some camomile. Do a patch test, then a mouth test. That’d probably tell you if they were safe to try. Of course, brewing them from the wild (as long as you are 100% certain no chemicals were used! and you watch for mold, etc., that’s probably the best way to brew them.) If you are buying them, watch for sulphites in herbal tea. They are often used as things are dried, to preserve their colour. Of course it wouldn’t be listed on the box, but if you buy organic ones, the companies are pretty good at answering questions like that. The big food companies usually want a doctor’s note. If there’s a local herbalist, she or he may have some lovely teas, too.

    Isn’t it funny that the thought of camomile tea put me into a state- but I pour meds into me, and usually don’t gave a serious reaction. For me, the more processed the better…so weird.

    Hang in there. The thing with MCAS is that what works for one, can knock another flat. I’ve read a bit of the literature around PTSD and anaphylaxis- and it is very common. All the studies are on people who have had one significant episode. What does it do when you’ve had hundreds? When you’ve woken up IN anaphylaxis. A whole other ball game.

    Thinking of you. (And yes, I will keep suggesting things- feel free to roll your eyes 🙄).

    Karen

    Like

    Reply
    1. Jak Post author

      Thanks Karen. It’s difficult re the camomile tea as it’s supposed to be mast cell stabilizing/anti-histamine and many of my friends find it helpful. Like you say, we all react differently to things so I’ll just have to give it a go and see what happens (if I ever pluck up the courage!).

      Jak x

      Like

      Reply
      1. Karen, The Walking Allergy

        Anti-histamine properties, eh? I wonder if it’s like a homeopathic thing. Daisy is a very common allergy. I’m a bit different- I’m fairly certain that I have IGE allergies and MCAS. What fits into what box is a bit trickier…but there aren’t too many people with MCAS who go into full anaphylaxis from ‘typical’ allergens, like dust, pets and pollen. It seems to contribute to their overall sensitivity level, but I don’t think that it is as common a trigger as fragrance or foods. Mold is a big trigger for most of us though.
        You could always do a patch test first- with the tea itself and/or fresh camomile. I really have to write this out for people. I have a ‘protocol’ that I follow with anything new. Saved my tush from some potentially nasty reactions.
        Or, stick to hot water with honey and lemon. Nah. Not the same…
        K

        Like

        Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s