I Was Denied Treatment During A Life Threatening Adverse Reaction

[Troy]

I've been made to look like a complete anxious hypochondriac trouble making fool in the presence of the hopital staff. I have this really weird messed up problem where I can't tolerate any substance that acts on my Autonomic Nervous System and I am extremly hypersensitive to any stimulants or depressant and I end up in the ER quite often whenever I take my Opiate based pain medication for my chronic pain.

Now I am having problems with the hopital staff because they have come to recognise me and they feel that my reasons for attending the ER is unnecessary and too frequent and now they are treating me with scepticism. I have been labeled and documented as having anxiety attacks by triage nurses during my severe adverse reactions and one nurse even refused to treat me when I felt like I was going to die during the distruption in my vitals. She told this wasnt some one stop shop and that I shouldnt keep coming to hospital so often and told me she didnt believe i was having an adverse reaction and that i was just being anxious. I don't even suffer from anxiety but I feel it is very dangerous to dismiss a patient having life threatening adverse reactions as having anxiety.

I had to report two of the nurses to the medical boards, my whole situation has become one big drama and everyone there looks down on me when I walk in for help. Ive had problems with one ER doctor who I also had to report because he called me a junkie and told me to stop abusing my medication when in fact I can't I have reactions to even the minimal dose.

To make matters worse everything seems to be working against me, like some sort of force or God if you will is mocking me and making me look bad by causing events to appear against my favour. Whenever I have a severe reaction at home by the time I get to hospital and they check my vitals everything is back to normal and then they dismiss me as having anxiety. When I do get to hospital quick enough and they see elevated heart rates and blood pressures then again they lable me as having anxiety, so I'm ****** if I do and I'm ****** if I don't. Everything about this mess is a catch 22 for me, no matter what I do it ends in trouble...

Furthermore the adverse reactions vary greatly, one of three things happen...

1- bradycardia (heart rate below 45) with hypotension (bp below 100/60)

2- bradycardia (heart rate below 45)with hypertension (bp above 190/90)

3- rapid heart rates with hypertension (bp above 190/90)

Usually it always starts off with feeling sleepy and then I find my breathing is supressed and whenever I close my eyes I wake up gasping for air and when I check my heart rate I find it very low and my blood pressure very high and my head feels like its about to burst from intense pressure in my skull and my whole body goes into a violent twicthing and painful spasm, and I have fever and flushed face with icy cold extremeties.

But for some crazy reason the hospital staff never get to see this bceause when I do get there fast enough for them to see it I'm either denied treatment or told to take a seat and wait without them even checking my vitals or when they do check my vitals by that time everything has settled and my vitals appear normal even though I'm still feeling unwell. thye dont understand that the adverse reactions vary in nature and in intensity and theat the reactions are quite short lived. The nurse I reported and have ongoing problems with who labelled me as having anxiety has never seen my during one of those slowed heart rate and respiratory depression episodes listed in numbers 1 & 2 above. Ive tried telling her I am not anxious and if I was my heart rate would be falling below 45 bpm as anxiety does not cause bradycardia but she says my vitals appear fine because they are fine whenever she checks me at the time. Someone up there really hates me, my life has turned into one of those movies where everyone thinks a person is lying or guilty and the only person who knows the truth is the person themselves and they are on a quest to prove it to others. Its like taking a car to a mechanic after experiencing problems but when you try and show the mechanic the problem does not show itself but soon as you drive out of there the problem reappears again. My whole life feels like that.

To make things worse I feel so uncomfortable going to hospital I try to put up with the adverse reactions at home which means they dont see the worst part and when it gets to a point where I can't tolerate it anymore I rush dowwn there but by then everything is settled back to normal and it makes me look bad so now I try to get there as soon as I feel unwell but because God hates me it happens that my adverse reaction at the time is one of the more milder ones and when they check my vitals they dont see any problems. ****** if I do, ****** If I dont. I know if I dont go to hospital then out of chance its going to be one of the more dangerous severe reactions and If i do choose to go to hospital its going to be a milder reaction, thats how it always happens.

All they see is a person who keeps coming into hospital claiming to feel unwell and expressing that their life may be in danger but none of them are seeing it. But I have witnessed time after time all the dangerously fluctuated vitals measured at home and felt all those intense sensations caused by distruptions in my vitals and the adverse reactions, often my mind is calm and I dont even feel anxious. I'm just so frustrated that everything is working against me. I'm so angry that I am just so tempted to take double my dose and go in there and show them how bad things can really get for someone with my sensitivity so they take me seriously the next time I need help, but of course I wont do that.

[lieze]

I'm living the same life.

Hugs.

It happens with meds and food.

My nurse therapist calls me a hypochondriac and an emotional cripple.

It's freaking scary.

What about a friend to sit with you?

A nurse friend might be best.

Someone who can call the squad for you if you go out.

Before my ablation my heart would do this on it's own without meds.

It felt like I was dying everytime.

I've often thought this thing I have should be named the disorder of a thousand deaths.

What a cruel joke.

I'm sorry I know I should be thankng God that I am still alive.

[janiedelite]

It's so sad to hear when medical personnel, who are supposed to be compassionate, take it into their heads that they know more about what you're going through than you do. And usually you're so sick at the time, you don't even have the energy to rationally defend yourself. The only thing that I've found to work for myself (and my mom who has cancer) is to have a friend or family member with you at all times. It seems like you are seen as less vulnerable if you have someone to witness bad behavior.

[futurehope]

Shall I assume that you will not be taking your opiate-based pain medication again ("whenever I take my opiate-based pain medication") ? From what you wrote, it sounds like you know what's going to happen, yet you have taken this medication anyway? Did I miss something?

[comfortzone]

Shall I assume that you will not be taking your opiate-based pain medication again ("whenever I take my opiate-based pain medication") ? From what you wrote, it sounds like you know what's going to happen, yet you have taken this medication anyway? Did I miss something?

I'm usually the type to try and distill down a problem to it's simplest form and then get to solutions that way...so I had the same question...? I don't have the solution however - just some thoughts.

If the medication you are taking - that is doctor prescribed - causes a life threatening set of symptoms - why are you taking it? Secondly why would a doctor prescribe you medications that cause a major problem for you if the doctors generally are available to people in an ER or any setting to help them?

What is the reason for the vicious circle of taking meds, feeling really bad and terrified, driving to a place that can't really help you as you are the one that took the meds to begin with and keep taking them....then asking for them to somehow make the reaction go away? It's not making sense to me.

There is probably just simply more to this than any of us knows.... questions though would be - wouldn't insurance money be better spent on seeking answers for your pain, getting a responsible team together of health care clinicians to give you alternate ways to cope with chronic pain that don't include medications that cause you to feel worse?

It is my firm belief that God does not hate you....quite the contrary....It is my firm belief that He loves you deeply and tenderly. Why does he allow suffering? I don't know. But it happens and not just to you - but to other very nice people as well everyday all througout the world - and if you know about Christianity as a religion we believe that God himself suffered - tremendously.... So please get help for yourself -- but think about how to get it.... If what you are doing now is not working - then seriously try another tactic.... to do the same thing over and over will get you the same results - which is exactly what you wrote - time to break the cycle and get some real help......Hoping you have the supports and resources to do that.

[Troy]

Okay the reason why I am taking this medication and putting myself at risk is because the pain gets really severe to the point where I am willing to risk my wellbeing to stop it I guess. I know it may sound bizarre but thats the case. I tried to find alternative therapy before I got to this point, I tried every other option, from pain specialist clinic, acupuncture, physiotherapy, hydrotherapy, gabapentin, pregabalin and every other pain relieving drug on the market but my body is just too sensitive to these substances and they all caused a reaction.

There are some days where I can tolerate the medication with minimimal adverse effects but its so random I never know when I'm going to be effected badly. I don't expect much from the hospital, only basic level of care for them to check my vital to make sure I'm not in immedeate danger and to allow me to wait until it passes.

[sandymbme]

Oh my dear! It is so very dis-heartening to be treated with suspicion and disdain. Especially when you are frightened and in pain! Is your primary or POTS doctor affiliated with your local hospital? If so, they could set up a written protocol for your treatment, where rather than asking for specific medications, you request a treatment plan they have on file. Or you can call your doctor (or his messaging service after hours) before you leave the house and ask him to call ahead for you. In my experience, no matter how knowledgeable you are about your condition, ER staff is just not interested in your opinion. They want data. It is helpful if you have a blood pressure cuff at home and can provide your vitals. If you take a reading every 15 minutes you not only can get a picture of whether you are improving or getting worse, being able to provide specific numbers makes you look more like an informed patient and less like someone just giving vague complaints trying to get opiate pain meds.

Let me re-assure you on the other matter troubling you as well. God cares deeply, passionately, and personally about you. The fact that you are still here at all testifies to God's care and provision for you. I know it sounds hard to believe, especially when you are in pain, frightened, and feeling so terribly alone. But the fact that God allows us to make mistakes, to struggle and survive on our own, is proof of how very much he does love you. The more deeply you trust someone, the more deeply you love them, the more freedom you allow them, right? Well God loves us so much, he not only gives us complete freedom, but He has forgiven us for all of our sins, even when we "spit in His face", IN ADVANCE. And any time you need God's attention, you have only to pray, God is instantly available to you. In fact, God loves you, personally so much, He begs you to pray to him, because God respects you so much he won't barge into your life without you inviting him in.

Sorry that I kind of went off on a tangent there, and I hope I didn't offend. But we "POTSy's" all have so very much on our plates, I felt compelled to remind everyone that we also have some pretty rich blessings. Not the least of which, is the wonderful community here!

Sandy

[lieze]

I did have an idea about a way to take meds that I thought wouldn't be so shocking to our systems if you do need to take it.

What about just taking a tiny amount and doing it slowly over time so the full force of the med isn't hitting your system all at once?

this is what I was considering if I wanted to take my Xanax.

take a very small amount like a fourth and crush it up in something like applesauces.

then slowly just take bits and spread it out over a period of hours.

I'm thinking the amount you got in your system might not be enough to cause such a severe reaction and you could slowly get in your med..

i realize the issue with this is you won't get the same effect with pain relief.

you may still hurt but maybe it would be a way to bring that level down a bit without causing such an extreme reaction.

[Troy]

Thanks for the advice guys, I understand my behaviour may seem odd that I am puting myself at risk to get pain relief, I will have to rethink my methods and prioratise. I guess this topic was more of a vent as I really feel like the circumstances I find myself in are always uncommon and against my favor, I just feel like life is mocking me by causing me to end up in the most frustrating and unlucky situations, I have faith in God but I always end up feeling like I just got punked, its hard to explain but I guess you have to be me to understand.

[Tachy Phlegming]

Is it that God appears to you in different guises but always in a white coat and introducing himself as a doctor? If he is telling you that can endure the pain or the debilitating and dangerous change in vital signs, that's got to be hard.

Most people would imagine one guise of this type of God out there you could have faith in but finding him is often a very elusive goal. It does seem that many of us try to retain an Platonic ideal image of a white-coated "God" who if need be, takes away pain -- but most importantly-- is a vital(s) stabilizer.

(Sorry if I didn't state it perfectly but these are quite difficult philosophical issues to address).

---

I think I remember your saying you got someone to do a TTT on you when you took a pain med. and they finally got it. I hope that at some point, you can pick up a pattern of when you get reactions because it would be easier to then ask to be monitored and have certain treatments. Until at least that point, it sounds miserable.

[juliegee]

Endure-

Sorry for all you've been through. I had a few thoughts From your signature, it sounds like you may have mast cells that are overly reactive. Multiple chemical sensitivities is almost a synonym for MCAD. Folks with hyper mast cells are NOTORIOUS for our inability to tolerate any opiate medicine. Tramadol is the pain med of choice for folks with our set of symptoms. (I can find resources backing me up if you want to show them to a helpful doc.) If your pain is pretty constant a tramadol patch might be a great option. For some reason, this class of med does not degranulate mast cells. All you get is pain relief instead of all of the other wonky unwanted symptoms.

How do you do with an anti-histamine?

Hugs-

Julie

[Troy]

Mack's Mom, I just had a look online at MCAD's and I ssee some similarities except that I went through the same problems whne I was trialling tramadol and I was ending up in the ER quiete often. I also tried anti-histamines to see if the reaction I was having was aresult of histamine release and could be blocked but unlike an allergy or anaphylactic reaction the drugs adverse reaction did not respond to antihistamines.

I will still mention MCAD to my specialists, it might be worth getting it checked out. Thanks.

Tachy Phlegming, yea I had my neurologist do a test on me during the adverse reactions and has documeneted it but it does little good when medical staff cant be bothered reading anything I present to them.

[crowebirds]

{{{Hugs}}} I am so sorry you have to deal with such bad doctors.

[zaks27]

I too am sorry for your troubles. As a RN myself, it greatly stressed me to hear that you're being treated in that manner. I have a suggestion that (I don't think was mentioned earlier). What is your diagnoses? Who's your primary care physican? Can you get your records and bring with you to the ER when you go to document your problems? I think if the doctors and nurses saw a current diagnoses and can document an actual disease process, they wouldn't behave in this manner. Have you seen a cardiologist to test your symptoms through stress tests, echo, etc. Remember, by law, any medical facility has to release your records to you. Just a thought. Take care of yourself.

[Troy]

Thanks for all the well wishes.

Zaks27, my initial diagnosis was POTS as well as having an uncommon version of Autonomic Dysfunction. My primary care is Professor Murray Esler who is an Autonomic specialist here in Australia. I always bring record from my specialists and Neurologist but the idiots (excuse my language) always refuse to read any of it. Thats why Im so upset, they are all too happy to pass judgement without reading any of the documents. Yes I have also seen a cardiologist who found the same results as the specialists due to symptoms caused by POTS such as excercise intolerance, cardiovascular effects due to postural changes and additionally mitral valve prolapse, but I have not been tested by a cardiolisgist during one of my adverse reactions to the medication.

Only my Neurologist did a table tilt study whilst he administered opiate to document the effects of the adverse reaction and even he was too afraid to tilt me after he saw how much the adverse reaction distrupted my vitals so I dont think it would be safe for a cardiologist to do a tress test whilst im having an adverse reaction because even standing up is much worse that usual during one of these episodes. The hopital staff wouldnt even read the results from found by my neurologist where I he explained the distruption in my vitals caused from the opiates administered during the table tilt test. I am sure they are all going to get whats coming to them once the complaint I lodged goes into action.

[ramakentesh]

id say that everyone here can probably relate to your post in some way or other. Many of us have been to the ER only to be shrugged at or worse.

Now days when I have bizarre symptoms I usually just ride them out. They are scary and I sometimes wonder whether they are gonna harm me in some way but in 7 years they never have yet - Im still alive and they do, eventually pass.

As for pain medication. Go to a naturopath - there are some herbs that are well tolerated by most people that provide good pain relief. Worth a try if your stuck.

[MattT]

First, have you thought about what would happen if they actually treated you in the E.R? They are going to treat you with regular doses of vasoactive drugs. Drugs you are hypersensitive to. If you go in there with super-low blood pressure and they give you a full dose of dobutamine or something it might kill you outright. Even though it ***** to be treated like an idiot by the doctors, I think your situation is ideal in some ways. You get to sit in the E.R. under observation for a while in case something serious does happen, but they aren't treating you with medications that could be very dangerous.

I can definitely relate as well. I seem to be in the exact same position as you - I've become progressively more sensitive to anything that affects the autonomic system, to the point where I can no longer drink a cup of chamomile tea or take even a quarter of a magnesium tablet without feeling like I'm going to pass out or die. My reactions are the same as yours: low or high blood pressure and heart rate in seemingly random combinations, loss of blood flow to the extremities, unable to move without making things much worse or starting to black out.

I'm too scared to take much of anything myself, but if you feel like you need the pain medication I think lieze's idea has merit. E.g., I'm definitely getting the RDA of magnesium in my diet and that isn't making me feel terrible like a tablet would, probably because it's spread out over time. Plus, if you gradually titrate up, you can stop if you start to notice negative symptoms without getting a full blown reaction.

I've found myself falling into the same attitude: "Why has God let this happen to me, why is everything going wrong?". In reality though, I think my situation has a lot to do with the unhealthy lifestyle I lived in the past, and without God's mercy I'd probably be dead already. I have to echo the other posters here, I believe He loves each of us unconditionally, even though we don't deserve it, and even though it may not feel that way at times.