Saturday, October 13, 2012

Middle Ages Medical Hacks

How about an update on my medical condition? This might be sort of cathartic for me. Note - I'm writing this while under the effects of extreme irritability. Kor referred to it as being "aggressive" months ago.

I agree now that confirmation bias was at the root of my insistence that I had a CSF leak, which was causing the symptoms that onset last November. In my own defense, when something very strange happens to you suddenly, and you think that modern science, particularly a neurologist, should have some answers.. and they look at you like you're patient zero of some new and exotic condition, that might cause an inquisitive, and rather desperate, person to try and figure it out themselves.

Because I had been pretty damn healthy for 45 years, I had always assumed that while physicians may not be able to treat every condition, they know what the conditions are. That's not true. It was my unfortunate luck that I was referred to a neurologist who seems to enjoy treating patients that he has a good understanding of the problem, but when it comes to something less obvious, has pretty much zero intellectual curiosity. I thought that every single neurologist in the US was trained to be inquisitive, curious, and excited when presented a case that didn't fit into the easy diagnostic buckets. I was wrong. From the beginning, it seemed like Dr.  X was not particularly interested in finding out what was wrong with me and treating it. His very first (and I mean this - it happened in the first visit with him) treatment suggestion was to simply address the symptoms with medication under the assumption that the condition would simply resolve itself. It didn't.

Yes, he did review the results of the tests my PCP ordered, which included blood work and an MRI/MRA of my brain. Those tests, apparently, did not point to anything obviously wrong. I never really mentioned on my blog what meds I was put on because there is a societal stigma associated with them. My big mistake is that I just took them under the assumption that they would be helpful. My PCP put me on Zoloft, which is an anti-depressant. She said she was prescribing it for "diagnostic reasons" - whatever that means. After she referred me to the neurologist, she was done with me. Any correspondence I sent to her was met with "ask Dr. X". I suppose she did not want to interfere with how he was treating me, without knowing that he wasn't actually treating me but rather just trying to make me feel better without solving the problem. I can't tell you how many times he told me that in the science of neurology, about half the time they have no idea what causes the condition. I'm serious... said "half the time". Not an exaggeration.

Dr. X put me on Nortriptaline, which is another anti-depressant which also has an analgesic (pain reliever) effect. The purpose of that med was to treat the constant headache I had. Again, instead of figuring out why I had the headache (and tinnitus) he just wrote a script to make it so I didn't feel the result of the medical problem I had. The third med I was put on was Valium. This is a benzodiazepine drug. It was prescribed to bring down the intensity of the ringing in my ears. Again - no real work was done to find out why my ears were ringing, but rather just try and make it less intense in the hope that it would just go away on its own. The Valium was at a low enough dosage (2m/g 3xday) that it did not cause the addiction that benzos are known for. They are as evil as heroin at high dosages.

I fucked up so badly that I can't believe myself. I'm usually neurotic in the extreme to know exactly what is going on with myself. I did not do the study required to become an expert on these drugs, which is very unlike myself. In my defense, I was just desperate to have the symptoms resolve. In the first couple of months after onset, I was pretty much a mess. John can attest to that. The doctors refer to it as "emotional liability", which is kind of a nice way of saying that I went mega emo. Again, there is social stigmas associated with that (which is the whole point of my blog being anonymous except to people who actually know me). Even though it's not a character flaw to lose your mind when you have a freight train running circles in your head 24/7, I still like to think I can handle every situation. That might not always be the case.

I had just assumed that a neurologist would be hyper inquisitive, and prefer having patients that are a challenge. When I work, I never give "I don't know" responses to problems given to me. I figure it out. I take that personally. Dr. X a seems only interesting in turning around the easy cases, and those that are difficult, he gives the impression he doesn't want to deal with it. He's not inquisitive enough to embrace the unknown and do the work that it takes to figure it out.

Early in my treatment, he was already talking about referring me to another neurologist - ya.. he wanted to pawn me off on somebody else so he didn't have to deal with the engineer who was not willing to accept "I don't know" as an answer. I had just assumed that those that are at the pinnacle in the medical professional weren't the Walmart types. I assumed every unknown would keep them up at night. He didn't even order any tests for me until 6 months after I had first seen him, and the way that happened was quite illuminating.

The visit I had with him in May, the growing frustration was more difficult for me to conceal, and I think he realized that my attitude was that he was a shitty physician.. one of those types that just want to run as many patients through his office as he could so he could bill as much as possible. The next day, he called me and said that he thought he wasn't giving me the best care he could - seriously, that's what he said - and asked me to get a spinal tap done. I did.

Apparently the results of the test did not make the diagnosis of my problem obvious, and so he asked me to do 30 days of steroids. I did. They helped quite a bit, but after the course of treatment was over, the tinnitus got worse again. I haven't been back to him since, even though I think I've actually figured out my problem this time. But hey.. I'm just a guy that is desperate to find a solution, and my track record for diagnosing myself is not that good.

Every single week since then (it's been 4 months or so), I keep telling myself I need to make an appointment to talk to him, and each time I dread going to see him because he's going to blow me off. I keep telling myself I need to see him one more time before I try to find somebody who is going to take my situation seriously. I'm willing to have every test imaginable done. I have the money to pay for whatever it takes. I'll go wherever I need to.. but part of my problem is that my natural procrastination seems to be amplified, even though I desperately want to find a solution to my problem.

Anyway, because the symptoms are less severe after the steroids, I decided I didn't want to be on the meds anymore. Yes, I know.. simply discontinuing meds without talking to the doctor is not a smart idea, but when talking to the doctor is an exercise in futility.. well.. I just did it. I stopped the Nortriptaline first. Because it's very similar to Zoloft, I didn't experience any issues with that. Then I stopped the Valium, and since that was a low dosage, I didn't have a problem with that either, other than the intensity of the tinnitus went up. I found my own solution to that problem, which I'll describe in a bit.

Finally, I cut the Zoloft dosage in half for a couple weeks, and then stopped it entirely. Stupid me did not go read about the implications of that... and there are rather severe implications. What happens when you start taking an anti-depressant is that your brain adapts itself to the chemical changes. You experience some temporary weirdness as your brain literally re-wires itself, but then it feels fine. Coming off them is an entirely different animal. Your brain needs to re-wire itself again. You can feel your brain doing it. Seriously.. most people have never had the sensation of actually feeling their brain, but when you come off an SSRI, you do.

I'm having the typical symptoms of "brain zaps". It's like having a mild electroconvulsive treatment while awake. It's a very short dizziness, with a electric zap in your brain that you feel, and for me actually makes a sound.. or the sensation of a sound anyway. It's highly unpleasant. It is the process of the brain rewiring itself in the absence of the SSRI. I feel shitty, to say the least... and I don't know how long this will last. I can't find anything definitive about the duration on the net, but I did find a mountain of information from other people experiencing the same thing.

One thing I'm pretty good at, though, is keeping my shit together while bad things are going on. I've not had a day off work during this whole shitstorm, and I haven't beat anyone to death. Realizing what is going on helps in working through why I don't feel like myself. I know it's just severe chemical changes going on in my brain, and hopefully it'll sort itself out soon. I want to get to the point where all I'm left with is the tinnitus and then work that out without re-wiring my brain.

What I don't want to do is start taking Zoloft again because I can't tough it out through the withdrawal. I don't have major depression. I shouldn't be treated for it when I don't. By the way.. I've had 3 brain zaps so far while writing this.

So, finally, what I think is the actual cause of my problem;  Adrenal insufficiency.

Logically, it makes sense. I had a very positive relief of symptoms while taking steroids. When I finished the steroids, the problems came back. The obvious answer is that it is just tissue inflammation that is causing the problem.

I have other areas of my body that are also affected by inflammation. I started using albuterol and advair (which is a steroid) for asthma about 10 years ago. I did some reading, and I don't think it's actually asthma that causes the lungs to tighten up. I sometimes cough up some mucus-like substance. From what I've read about that, the mucus is a response to inflammation in the lung tissue, and it clogs the breathing passages resulting in the sensation of being short of breath - or an asthmatic episode. So, then it's not at all surprising that while I was taking the steroids last May, my breathing was better than it had been in years. My lungs were clear as a bell and it was amazingly good. The steroids fixed the inflammation in my lungs, so there was no more production of the mucus.

There are a couple other soft tissue areas in my body that were irritable, but felt just fine when on the steroids. While reading about the steroid I was on, prednisone, I learned why the dosage is titrated, or reduced gradually. It's because when you are taking a steroid, the adrenal glands stop producing the body's natural steroid. The adrenal gland is supposed to keep the steroid in balance, and so when you're taking a drug to replace the natural steroid, the adrenal gland stops producing steroids. In order to get the adrenal gland to start producing them again, the dosage is reduced gradually.. and in my case, it seems like the adrenal gland is simply not producing enough steroids to repair the inflamed tissue.

If the adrenal gland is, in fact, producing the amount of steroid that it should, then it would follow that there is some other chemical process that is causing soft tissue inflammation. Either way, that seems to me to be a reasonable cause-effect. I either have an adrenal insufficiency problem, or there is something causing tissue inflammation.

What I did to verify this hypothesis was to start taking a non-steroidal anti-inflammation drug (NSAID). It's an over-the-counter med. I started taking it after I had stopped the Nortriptaline and Valium, and the results are that the tinnitus intensity is about the same as when I was taking the Valium. I don't have much in the way of headaches either.

The NSAID is helping control some of the inflammation, including in my lungs, but it's not strong enough to completely solve the problem. If I do have an adrenal insufficiency, this would likely mean that I'd have to take some sort of steroid for life. That would suck. Steroids make me feel like I've had 1000 cups of coffee.

When I started the treatment in May, I went for days either without sleeping at all, or only for a couple of hours. There may be a way to control that.. I'm not sure. So.. I've known about this for 2 months and have not made an appointment with Dr. X, because I dread explaining this to him, and I dread the "stop being a wikipedia doctor" attitude I'm going to get from him. I need to do something though. I have to make the appointment, and I think about it every day, and every day I don't do it. I want to fix this problem.. but I don't want my doctor to contribute to my problem by making me feel like a burden.

Gah.. two more brain zaps..

I've met my insurance deductible quite a while back this year, and so if I'm going to have any other testing done, I should do it ASAP so I don't incur the deductible again. I'll try my best to make an appointment on Monday, but I'm sure I'll be able to find a reason not to. If I do see him, I'll have to tell him I stopped the meds without talking to him first, which is not something a patient should do. Hopefully I don't get shamed for doing it. I had no business being on those meds in the first place.

1 comment:

Anonymous said...

So sorry to hear about the shit you are going through. If he is not helping, it may be a good idea of finding one that will. He works for you so stand your ground. I hope things get better for you, hang in there and don't give up.