I had a total meltdown yesterday. As my throat grew more swollen and I grew more alarmed, I finally put it together that I was experiencing an acute angioedema episode. I didn’t recognise what was going on because I usually get a swollen tongue and lips. On Friday, I chalked the edema up to fluid retention from the saline. The spot deep in my throat under my jaw that I mentioned in my last post always itches when I am having an allergic reaction – it’s the canary in the coalmine of my body – but I don’t pay attention to it as closely as I should. This was a slow cooking reaction: laboured breathing and swollen eyes, fingers and sinuses (stuffy nose) on Friday evening, itchy throat spot and heart skipping/arrhythmia started Saturday (both continue today, Tuesday), flushing/extreme overheating on Sunday, and throat closing on Monday, coupled with what felt like body edema – swollen bowel, abdomen, muscles…
Now I know throat closing/laryngeal swelling calls for me to use my Epipen, but, like I said, I didn’t cop on to what was happening until late in the game. Also, I would really have to be on death’s door to voluntarily inject myself with epinephrine. But I was very, very scared. Hence, the meltdown. I actually said to my husband, “Why can’t I just have a peanut allergy – something I can try to avoid?” I actually said, “Why can’t I JUST have M.E.?!” I don’t say those words lightly and, of course, if I could barter away my illnesses, ME would be the first one to go, but it is terrifying to feel like you have no control over anything and living with the threat of a fatal allergic reaction that can’t be identified is the ultimate loss of control.
I’m too tired to explain thoroughly and scientifically, but, basically, angioedema is the same mechanism in the body as urticaria, only in deeper tissues. If it happens in the tongue and throat and lungs, it can kill you. Often, as in my case, there are no identifiable triggers, so you just deal with it when it happens and hope it isn’t serious. It can present with urticaria or without and it can be as severe as anaphylaxis or very mild. If you want to learn more, Medscape has a very comprehensive set of articles (many tabs at the top with many pages per tab- just click on the next page at the bottom and you will go through them all). All of the better information on these types of conditions is relatively new. When I was diagnosed with idiopathic anaphylaxis 12 years ago, blood tests turned up no allergies, so the doctors washed their hands of me. That was it. When I suggested alcohol as a possible culprit, the doctor was disdainful and dismissive. When I mentioned that most times this happened was during my menstrual cycle, I was ignored. Here’s an Epipen, go away. Nobody knew about mast cell activation or histamine intolerance. And, of course, I was right! With my limited knowledge at the time of all things medical, I came up with the common denominators that made sense: booze, period, ibuprofen.
For an excellent article read this:
“The ingestion of histamine-rich food or of alcohol or drugs that release histamine or block DAO may provoke diarrhea, headache, rhinoconjunctival symptoms, asthma, hypotension, arrhythmia, urticaria, pruritus, flushing, and other conditions in patients with histamine intolerance.”
A few years ago, when I was diagnosed with autoimmune urticaria and angioedema and the doctor warned me (2 years too late) that people with this condition are more likely to have autoimmune thyroid disease, I asked him why the doctors years ago hadn’t looked into this autoimmune component. He said it was unknown then. He said it was something that only recently came to light. The only other thing he suggested was prophylactic treatment with Zyrtec, which I half-heartedly tried for a few months. No mention of H2 antihistamines or mast cell stabilizers. No mention of H3 or H4 or diamine oxidase. No discussion of mast cell activation, mastocytosis, histamine intolerance, low-histamine diet or any tests – whether reliable or not. No interest in looking into acquired angioedema, bradykinin-mediated angioedema or estrogen-dependent angioedema, all of which don’t respond to antihistamines. So, all of us – the patients – are scrambling along the edges of science. I feel like a surfer on an excruciatingly slow-moving wave. I come up with theories and do my own research and I see it mirrored in others’ blogs, but no doctors are accessible to help and no tests are robust enough to firmly diagnose.
For an excellent summary from another ME-afflicted blogger with mast cell problems (as well as EDS), read Jak’s blog: Mast Cells & Collagen Behaving Badly.
Which brings me back to my meltdown. For the most part it was a silent, immobile and tearless meltdown. I was simply frozen with fear. Saline probably caused a massive histamine release – right in the middle of my low-histamine diet experiment. I brought this situation on myself by requesting the saline. I had a reaction to an innocuous substance that is used to treat allergic reactions! Just like I had reactions to the antihistamines that are used to treat allergic reactions.
I can’t live with ME and angioedema and histamine/mast cell issues and sleep apnea and thyroid disease and crippling periods and a headache that never goes away and reactions to so many drugs!!
Fear of my throat closing more while I slept, fear of sleeping without my CPAP, fear of being woken up constantly by my CPAP, fear of taking an antihistamine, fear of not taking an antihistamine, fear of eating things that cause inflammation or histamine release, fear of losing more weight, fear of being on the pill, fear of having to weather my periods off the pill, fear of living the rest of my life in pain, fear of being in so much pain I have no choice but to take painkillers. What if I break a bone? What if I’m in a car accident? And then, swiftly on the heals of that thought, the fear that sent me into a tailspin: What if I have to go to the hospital? IV saline… IV painkillers… IV Benadryl… Contrast dye… Anesthesia… Surgery… What do I do when I’m older and I can’t avoid some procedure? When I break an already-osteoarthritic hip? What do I do if my body reacts to everything? I’m dead.
Fear of dying. Fear of living in this fear.
My answer to all of it was to throw caution to the wind and eat a bunch of forbidden histamine foods.
This is a perfect segue into part II of my diet post. I realise you are all on tenterhooks waiting to read it, but not yet, not yet.
The most recent article describing IA (idiopathic anaphylaxis), written by Karen Hsu Blatman and Leslie C. Grammer, explains the distinction this way:
Patients with IA-A experience urticaria or angioedema with upper airway compromise such as laryngeal edema, severe pharyngeal edema or massive tongue swelling without other signs of systemic anaphylaxis. Patients with IA-G suffer from urticaria or angioedema with bronchospasm, hypotension, syncope, or gastrointestinal symptoms with or without upper airway compromise. Reference.
OH MY, MY HEAD IS SPINNING! REALLY, ALL I CAN SAY IS STAY AWAY FROM ALL THINGS THAT ARE UNTRIED OR NOT PROVEN, AS YET, TO WORK. AGAIN, UNTIL THEY SOLVE THE PUZZLE OF ME, THEY CAN’T OFFER A SOLUTION. WITH SO MANY ALLERGIES, U REALLY R PLAYING RUSSIAN ROULETTE WITH YOUR LIFE. LOVE, BJ.
Thanks for the support, BJ! I just want to find something that helps and with my unwillingness to take drugs, there’s not very many options out there. Next experiment: oxygen. 🙂
U WOULD THINK THAT WOULD BE HEALTHY! I’M NOT MUCH FOR DRUGS. THAT’S WHY I TAKE THE OILS THAT I KNOW WORK FOR ME. I’M SENSITIVE TO A LOT OF THINGS TOO–HAD BAD FOOD ALLERGIES BACK IN MY 20’S. JUST TOO MANY BAD THINGS IN OUR FOOD & AIR, ETC IN THIS ”MODERN” AGE! PEOPLE R BEING POISONED BY SO MANY THINGS WE TRUST–INCLUDING OUR MEDICAL PEOPLE!!
I couldn’t agree more!
At the edge of my seat and in awe, in complete awe, you are one stubborn Irish woman. Hats off to you. xx
Stubborn… or stupid! Thanks for the cheer. 🙂
This says it all in a nutshell –
‘I feel like a surfer on an excruciatingly slow-moving wave. I come up with theories and do my own research and I see it mirrored in others’ blogs, but no doctors are accessible to help and no tests are robust enough to firmly diagnose.’
I feel like I conduct a science experiment on myself. I understand what you mean about all the issues in addition to m.e. being too much to bear. I have added one after the other – haven’t talked about them on my blog, but just one unbeatable thing after another sick-wise with no answers or feelings of hope.
Thank you for this comment. It’s the worst- not only dealing with sickness, but dealing with muscle wasting and osteoporosis, depression, loneliness, poverty, and any other illnesses that may come along. Just waiting for science to catch up.
YES REST! DON’T EXPEND YOUR ENERGY TRYING TO FIND SOLUTIONS: IF ONE IS FOUND, WE”LL BE TOLD! SURFING TAKES U OFF IN ALL DIRECTIONS & U’LL MOST LIKELY ”WIPE-OUT”!!!! JUST DO YOUR BEST–REST & CONSERVE THE LITTLE BIT OF ENERGY YOU DO HAVE! DON’ BE PUSHING IT!
That is scary! Try not to let the fear beat you, easier said than done, I’m sure! Do you do any guided meditation? Sometimes it’s the only way I can get my brain to shut off and shut up, especially if it’s off on some nasty tangent…fear, etc. Still looking for the “magic” recording, but will keep trying. What kind of oxygen are you going to try? Hope things stay on an even keel for you. xx
Thank you for your comment. I probably won’t get to try oxygen since my doc wanted me to come into the clinic and that makes everything go wrong for me. Yes, I love meditation. Check out this post; https://elizabethmilo.com/2013/07/18/homework-discussion/
Ugh, it’s so much worse when there’s more than one thing going on, keep strong and hope that you’re recovering. 🙂
It’s just so, SO wrong the way doctors are failing people that don’t fit into their little categories of diseases. I’m so sorry you have to go through all that AND try to figure it all out yourself. I hope you are feeling better. Take care.
I relate to this post soooo much! Your meltdown is like dozens of reactions I’ve had, with *exactly* the same thoughts and feelings. I have the same anxieties about surgery, or having an accident, and needing drugs I simply can’t take (I’ve needed a laparoscopy to confirm endometriosis for 10 years now but can’t possibly have it). I’d kill for just one nights sleep in the last 20 years. My periods are crippling but of course I can’t take a damned thing for them. Migraines make me want to top myself. It’ such a shit way to live.
Big hugs from over in the Lakes xx
YES, IT REALLY IS. MY DOC WANTS ME TO GO IN FOR A HIP REPLACEMENT. I TOLD HIM I’LL MANAGE FOR AS LONG AS POSIBLE BEFORE I’LL PUT MY BODY THROUGH THAT KIND OF STRESS, PLUS I WOULD NEVER HAVE THE STRENGTH OR ENERGY TO USE CRUTCHES, SO FAR I’M ABLE TO CONTROL THE PAIN & TRY NOT TO OVERDO IT. ANY THOUGHTS OR ADVICE WOULD BE WELCOME. I’LL SEE THE SPEC IN SPRING.
I know how you feel, and that is a bad place to be in your head, I have been there, am there, I visit there often.. It’s scary and all we can do is fight on day by day.
Elizabeth! I have the very same train of thought about what if something goes wrong on top of the ME? How could I possibly tolerate whatever it would take to fix it? I comfort myself with the thought that I probably won’t make it that far anyway.
The saline reaction is alarming. That must be so frustrating and dismaying, especially because it’s helped so many people. I have been afraid of saline in particular for a while…I am very sodium intolerant (it gives me tachycardia; even Dr. Cheney can’t figure out why…I miss potato chips something awful) and I have worried about what might happen if I need it someday. And I have histamine problems too now, though mine are just crushing headaches and a wired feeling, nothing as severe as yours.
I did wonder about your glutamine supplementation, given that you know you have problems with MSG…my histamine intolerance first showed itself as intolerance of a supplement rich in glutamine. I know we’re all different; that’s just a thought.
I am currently practically bed ridden as I have been experiencing bizarre symptoms
So far every blood test and CT scan has come back normal . I’ve seen tons of drs. They
All say we don’t have no idea what’s wrong with you and just send me to another dr.
Symptoms came on gradually two months ago around sept 2013
Past week and a half nov.22 symptoms are worse and wont seem to lift
Before this I was an outgoing fun loving lots of energy hobbies love being around people places
Trying new things. Now I feel like a shell of former self. I had to move back to my parents and relay completely on them , I am thankful of there help. But I want to be a strong independent person again. I lay in bed looking out the window wondering what this might be everyday and pray it gets better and someone with the knowledge can help.
Or go away very frustrating and scary
Horrible horrible Brain fog / feeling drunk 24/7
Difficulty concentrating/memory horrible cognitive impairment
memory and learning issues, short gaps in time, clumsy speech, loss of creativity and problem solving skills, forgetfulness, depression, and general confusion among other brain fog symptoms
Lost the able to drive
Sensitive to light
Personality change .not creative lost of interest barley able to socialize
I feel my immune system is depleted
Feel something like heavy” cotton “in my head
Horrible Pressure around and behind ears felt at all times
Crying easily symptoms get overwhelming
Feeling like a shadow of former self
Anxiety, panic attacks. ,crying about 9 times a day because so overwhelmed with symptoms .
Feeling “hollow” inside
Can’t handle life’s stressors
Feeling no joy feel my mood is flat
I sense I am no longer producing neurotransmitters no dopamine serotonin ect.
Brain feels like it shrunk
Every day task seem impossible (barley enough strength to bath)
Everything seems to hurt me
Extremely sensitive to sounds ,smells,noise
Sensitive to foods and supplements
My body has some sort of reaction to almost everything (I practically live in a bubble )
Stuck in a dream world
Waking up in the night drenched in a cold sweat
Waking up with heart palpitations
Feeling as those lower legs are not attached
Leg bellow knees feel not attached I feel the urge to move legs just to make sure I am not going paralyzed.everyday my symptoms get worse i have been to the ER room several times no Dr has provided any insight or relief yet. Very frustrating. I know there there is an answer out there somewhere i have hope. 🙂
If I could experience a little relief in symptoms I would be happy. I know there is a cure .
I am in desperate need to get my strength back and move on with my life. Any help of advice would be so much appreciated .thank you so much
Oh Sara honey, you just broke my heart. I will try to answer more soon, but listen, this is the best advice I can give: make sure you have had all the general tests done and most things have been ruled out (blood tests for infections, inflammatory makers, autoimmune illnesses, thyroid hormones, CT to rule out cancer, chest xray etc). If the doctors are stumped right now and this started two months ago, I would stop everything. Stop doctors, stop researching, stop looking for answers. Just for a month or two. Stay with your parents and rest. Totally rest. Let them take care of you. Try to quiet your mind, try to find peace, meditate, stay away from medical articles and forums. Eat really, really well. Drink lots of water. Don’t call anyone, don’t exercise at all. If I could go back to December 2011, I would do everything possible to try not to let the fear take me over, I would stay in bed and let people wait on me and do everything to decompress from life and see if I felt any better after a few months. I pray your symptoms pass. I know many people who have been bedridden and sick for months and come out the other side as strong as ever. Believe you can and you will and listen to your body. Don’t push through, don’t go down that rabbit hole of despair. I know nothing about your life, your age, your health before this, so be sure you see doctors to rule out as much as possible. But, please rest. I’ve know it’s hard, but now is the time. You can get on top of this. X
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