Monday, July 13, 2009

Tin God Syndrome: The Hit-and-Run Doctor

If you haven't read the post below...I have had two run-ins with Tin Gods in the past few months. The one below, the Doomsday Doctor, is a thankfully rare beast.

This one, the Hit-and-Run Doctor, is not.

It is possible that Hit-and-Run Doctors are the most common of all forms of Tin God Syndrome. It is very rare that a person with a chronic health issue doesn't have a run-in with at least one, and usually far more than that. Of all the Tin God stories I hear, H&R Docs are the most common.

My story begins about a month ago. Summer started early in Portland this year, and temperatures were at near-record highs. Not good news for those of us, like myself, who suffer from heat-reactive disorders. All you can do is embrace the central air and cope with the symptoms with liberal doses of medication & good-old fashioned North Carolina sweet tea (of which I am an expert).

I've had MS now for well over a decade. My most hated symptom is not pain. It's not the loss of mobility. It's nausea. I absolutely loathe being nauseated. And while I cope with mobility issues rather stoicly, and I have a high threshold for pain which goes a long way towards dealing with that unpleasant aspect of MS...I am a giant crybaby about nausea. I am the least likely person on earth to become bullimic: the idea that anyone FORCES themselves to vomit is just beyond my ability to comprehend.*

It's just my bad luck that every summer, the Nausea Fairy comes to visit me in force. I have tried damn near every medication on the market. Phenergan worked well for me for years, but it's now to the point that in order to take enough of it to be effective, it turns me into a complete zombie. I almost enjoyed watching Rock of Love on it once. It's that bad.** One of the medications I tried last year was Reglan. I used it for about three days, and it was ineffective. I was switched to Zofran, which works very well (and the pills are super-tiny, making them very easy to swallow when you're feeling sick to your tummy---I'd like to shake the hand of the scientist who realized that). I put the remainder of the Reglan away in a box, and promptly forgot about it.

Fast-forward to last month: I was suffering severe pain and terrible nausea. And wouldn't you know it: I ran out of Zofran, and the pharmacy was closed. Desperate, I checked the medicine box and found the long-forgotten Reglan. I called the doctor on call (I had begun taking one different med since the last time I was on Reglan, and I wanted to be sure it wasn't counterindicated). I got the go-ahead, and took the pill. Within 20 minutes, I was nausea-free.

Since the Zofran is rather expensive, and the Reglan was working, I continued to take it for the next week. The only side-effect were some vivid and disturbing nightmares, but I can deal with nightmares. Nausea, not so much.

Then one day, I woke up and just felt WRONG. I couldn't immediately put my finger on it: but I knew something was up. As the day progressed, so did the feeling. But now, it was accompanied by some startling symptoms: terrible anxiety; confusion; tremors in my hands; a sensation of being freezing cold (during a very hot summer afternoon); a loss of appetite; and a tightening in my chest, face & jaw that was causing my TN pain to go into overdrive. I called the doctor, and waited for a call back.

While I waited...all hell broke loose.

I began to sweat, while still feeling freezing cold. My heart was racing and pounding, the anxiety went from mild to overwhelming, and it was coupled with a debilitating sense of paranoia. I couldn't cope. I began to have a panic attack...which is not like me in the least. Most people who know me would describe me as a calm person, and at that moment, I was the least calm person in the known universe. I felt like I was going crazy. I didn't feel like me at all.

The doctor called back, and told me that this sounded like a "known and not uncommon" (WTH?) bad reaction to Reglan, and I needed to go to the ER right away. By the time my husband raced home from work to take me, I was rolled up in a ball in a corner of the bed under three blankets, shaking and crying uncontrollably, startled out of my wits by the slightest movement or noise (confusing the hell out of the cat), trying desperately not to scream because I knew, with what little sanity I had left, that if I started screaming I would not be able to stop.

When I got to the hospital, I was almost immediately taken back to triage, where another startling symptom came to light: my blood pressure was sky-high. I have never had high blood pressure in my life, having dealt with the opposite for much of my life. I was then overcome by the need to not go back into the waiting room with all the people in it. I begged the triage nurse not to send me back out there. I cried, I pleaded. I had no rational reason for it; I was far beyond being rational at that point. I just knew I did not have it in me to face that room full of people. I just couldn't do it. The startled nurse called a doctor in, a very kind woman who took me by the hand and told me, "I know you think you're going crazy, but you're not." She gave me 2 Benadryl (the first and only time I've ever been given meds in the triage room) and told me that they'd take me back to a private room right away, and I'd be ok.

If only she'd remained my treating physician!

I was left alone for about 20 minutes, to see if the Benadryl would work. It didn't. A nurse came in, got that information, and went to get the doctor.

By the time H&R arrived, my husband Jonathan was there with me and I was once again crying uncontrollably. I was also feeling very sick to my stomach. My husband helped me to explain what was going on. As soon as he heard "pain," his demeanor completely changed. I'm accustomed to this, but usually the change is skepticism, annoyance, or rarely, pity. But this time, it was more like...fear. Reticence. Maybe even cowardice. I thought perhaps it was the paranoia, but my husband noticed it as well. I didn't much care; as long as he made this nightmare stop, he could be as fraidy-cat as he wanted to be. Besides, I didn't want any pain meds at that point. I just wanted not to go insane.

Over the next few hours, I got an EEG (I have a very minor inherited heart condition) and had some blood taken (which didn't go well; I have very bad veins, and they couldn't get much blood from me before the only vein they could locate collapsed). Before the nurse left, I told her the Benadryl was not working. I was worried that if these symptoms continued for much longer, I would have a serious attack of the trigeminal neuralgia as a result of this tight-jaw business. I asked to see my doctor.

The doctor did not arrive, another nurse did...with a cup. Oh, great. Another drug test! And I wasn't even in there asking for pain meds. I just wanted to be able to stop crying and hiding under the sheets!

I took the test. And asked to see my doctor right away.

Time went by, and the tightening in my chest & jaw became markedly worse. This did not help either my TN or my panic. When next the nurse came to check on me, my husband told her I was in pain and needed help. The Benadryl had not worked. I was getting worse, and the anxiety was overwhelming. The nurse wrote on a dry erase board that my "top concerns" were anxiety, nausea and pain. I asked to see the doctor. Again.

Finally, in comes the doctor. He sees the board and looks like he's going to have a panic attack himself! He seems to be barely able to speak. We talked to him, he murmured. I couldn't understand him; it was like trying to decipher the lyrics of an early R.E.M. song. It's the end of the what as you know it? Well, I don't feel fine!

I told him I felt I needed something for this anxiety, for the nausea, and yes, I now needed something for the dreaded "p" word. He asked me if I had any of my pain medication with me. No, I had left home in a terrible state, and for the first time since I was 14, without a pocketbook. He quite visibly paled. You would have thought I was asking him to remove a thorn from the paw of that tiger who mauled Seigfried. It was then that I put two-and-two together: this was a Hit & Run Doc! Oh, joy. I'm losing my mind, and I have the bastard child of the Cowardly Lion and Speed Racer for a treating physician.

The only semi-effective way of dealing with H&R Docs is to corner them: insist they make a decision, right there and then, that they deal with your symptoms (if you let them go "look something up," or "discuss this with a colleage," you'll probably never see them again). I told him I needed this disaster to be over: NOW. I had done nothing to precipitate this. My pain was not a matter of my having eaten nachos or stood outside in the wind or put on blush. I took a medication that one doctor prescribed, and another ok'd me to take. The reaction was a KNOWN AND NOT UNCOMMON one (I'm still trying to get over that morsel of information). I passed your little drug test, so what exactly is the issue here, H&R???

The problem with backing H&R Docs into that corner is that those doctors with the more advanced form of H&R will always respond in the exact same way: they will lie. To your face. With the guile of the junkie they not-so-secretly fear you are.

This one had it bad. And so he lied, and told me he'd send a nurse in right away with some medication for me. He confirmed that my "top concerns" were anxiety, pain and nausea. He asked me what I "usually take" for a bad TN attack, and what the dosage was. He even wrote it down, the deceitful thing. And off he went!

The nurse came back with something called Cogentin: a medication to end the bad reaction. I asked her if this would address pain or nausea. No. Of course not. I sighed, took the meds, and asked to see H&R, knowing full well the likelyhood of seeing that guy again was about the same as my finding Hoffa buried under the petunias in my backyard.

Time moves on, and I wasn't feeling much better. I told this to the nurse, and asked (again) to see the doctor. Instead, she returned with another dose of the Cogentin. I was not in the least surprised. Tellingly, neither was the nurse. Twenty minutes after that...the panic was gone. I stopped crying. I felt more like myself again! But the damage was done---I was in a full-blown TN attack. When the nurse returned (no H&R! What a shock!), she told me she was "having difficulty locating" H&R. "Anxiety" was removed from the dry-erase board. "Pain and nausea" were all that remained.

By this time, Jonathan had become exasperated, and went home to retrieve my pain meds. I took two Oxycodone, and waited for H&R to reappear. I was very worried about the nausea getting worse, as I had no medications for that save the Reglan, and I sure as hell wasn't about to take THAT stuff again!

We waited. And waited. And waited. The pain subsided. The nausea, thankfully, did not get worse. I got dressed. I just wanted to go home.

And then, some unpleasant news. That tiny little amount of blood they took from me? It clotted. They would have to try again. I refused. I had been stuck now, repeatedly, in both hands. They found one vein, and that obviously was inadequete and in any event, couldn't be used again. I was already bruised, badly, from it. I was gaurenteed site reactions. I was exhausted, I was embarassed by how I had behaved in the triage while under the effects of that bad reaction and I just
wanted to go home. I had had enough.

The nurse argued with me, but it was no use. I wasn't going to budge. I wasn't always that way. Once, I let an ER stick me eleven times, quite literally from my hands to my feet, trying to find blood. They didn't get a drop. I was in agony from site reactions for so long, I went to my doctor to see if there was a cream or home remedy or something I could try to give me some relief. She chewed me out instead. "If they don't find anything in three sticks, they aren't going to find anything," she told me. "Tell them NO. You have the right to do it; exercise it." So I did.

The nurse was seriously unhappy with me. "I wonder if H&R will show up now!" I asked Jonathan.

He did. But not to admonish me over the blood work: I was being discharged. I had underestimated the level of H&R Tin God Syndrome this guy had. It was so bad in him, that even the hint of an argumentative patient was enough to terrify. I had to go.

He never asked me if my pain or my nausea were any better, or worse. Not once.

I don't know which was more stressful: the bad reaction to Reglan, or being subjected to yet another unfortunate "victim" of Tin God Syndrome while having it.




UPDATE: I was given three days of the Cogentin, but it was inadequete. My doctor upped the dosage and I took them for another week. I am, for the most part, fine now. I do have a lasting, low-level anxiety that I can't seem to shake. Two days ago, I went to the clinic and got a prescription for an SSRI to combat it...via yet another new Tin God! I am attracting them like MAGNETS these days. The feast, after the famine. I will share that story soon...








*Please don't send me hate email or comments on this. I am not making light, nor am I showing intolerance of, eating disorders. My aunt has suffered through an eating disorder for decades, and I have seen firsthand the devastation it causes not only to her but to her family as well. My heart goes out to anyone battling an eating disorder, and to their loved ones.
**I am, however, making light of Rock of Love. My heart goes out to anyone who is forced to watch it, and their loved ones. And to the poor soul who does Bret Michael's hair extensions. We're down with
your struggle, buddy.

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2 Comments:

At 5:55 PM, Blogger Lyn said...

Dang, I'm sorry you went through all of that.

Also, I am glad I don't have premium cable because watching Rock of Love and that Scott Baio show was enough to drive me up a tree. Whatever happened to all the cool music they used to play on VH1?

 
At 8:28 AM, Blogger Angel said...

Oh honey, and I thought my withdrawal from Lyrica was bad!

I had to stop taking reglan because it gave me tardive dyskinesia (which I still have). Can't take phenergan, had an allergic reaction (and it brought up some bad dyskinesia). So zofran is my anti-nausea drug.

Thinking back on your last post, when I went to the ER in May, I had a Doomsday doc. Thank GOD the attending doc is awesome.

I don't know if the 3rd doc I saw for a severe migraine attack was a Hit & Run. couldn't understand half of what he said, and he tried to discharge me fast (with drugs!) until I started crying because I wasn't feeling better.

I wish these docs could experience what we do, just ONCE, so they can develop some compassion for people w/ chronics.

FYI, watch out for compazine--if you've had a reaction to reglan, you're likely to get a reaction to that and phenergan. Learned that from my Neuro's nurse.

 

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