Comments on life, the universe and everything from an aging Sixties survivor.

Location: Massachusetts, United States

Ummm, isn't "about me" part of the point of the blog?

Saturday, January 21, 2017

Latest round begins

Of course, the Beast had to wait a week after my neuro consult. On a rational level, today might have been worse: Mankoski 6 to 7. What kind of whacked me was that after meds (except Clonazepam) and an hour of bed rest, I was able to get up, and got hit again. That was another hour lost, and a first-class pain hangover now.

There are still hints--more than hints, really--of bilateral manifestation. The trouble is, I've lived with TN so long that I have no recollection of what to look for at the beginning. Would it be precursor pain, full-on episode, or what? I guess we just wait and see.

No surprise, my neurosurgeon has recruited me to join a TN study. It's at Yale, but one doesn't have to go there. I've volunteered and I seem to meet all the criteria but one. The study is looking at the genetic component of the disorder, and where possible, the researchers want to be able to sample your DNA and your parents'. My parents have been dead for over 20 years, and it strikes me that this could be a problem for such research. In most people, TN appears after age 50, so the proportion of people under treatment with living parents may be disappointing. I'm game, anyway, and I'll post more as I learn it.

Sunday, January 15, 2017


My town's legislature is an open town meeting. When a question comes before it that the meeting, or actually its leadership, aren't quite ready to address it is "indefinitely postponed." This says that the question is a good one whose time has not yet come.

The question of my TN surgery has been indefinitely postponed.

I'm for this, and I didn't even have to argue for it. The neurosurgeon understood that as long as my TN is contained  within tolerable limits by drugs, no carrier in the US is going to cover surgery.

Contained is the word. My present trifecta of drugs is doing a good job containing the TN. I'm having to use Clonazepam very rarely, which is a good thing. Alone of my medications, Clonazepam can create clinical dependency. I didn't know that I had turned the corner into dependency until I began taking Baclofen and found that I couldn't take both at the same time. The pair of them knocks one out so fast that one barely has time to lie down. Cutting back K had to happen, which led to a fortnight of interrupted sleep and extreme crankiness. Not much of a dependency, for sure ( I hadn't increased the minimal dose), but enough to be a warning. One neurosurgeon I saw called Clonazepam "a witch." I know what he meant now, and I'm back to using it only when the neural pot is about to boil over. Trifecta + K + T=containment (where T is my absurdly increased pain threshold). 

It's all a high wire act in which every step has risks. I've hit the safe maximum on Carbamazepine and Gabapentin. It's a question for my physician whether running up the Baclofen would be any help at all. Clonazepam is addictive. My pain threshold is now so high that I run the risk of sustaining serious injuries without even noticing them.

I had the latest instance of that a couple of weeks ago when my platelet donation failed. Failure of the stick is an occupational hazard for platelet donors, because it involves needles that are nearly the diameter of the vein itself. I knew there is always a risk of a hematoma extensive enough to cause at least discomfort after any blood draw, and I knew what to do about it. 

Several days after this failed draw I noticed that I had a pretty extensive hematoma. It was big enough to cause discomfort at least. I felt nothing. Up to a point, pain can be your friend, but that friend is gone. It's hard to remember to check visually after any injury when every accident seems like an incident.

Let's not forget that people with chronic illnesses will be the first under the bus when the Trump Congress gets busy dismantling Federally subsidised health care. I don't know what my personal pharmacy costs every month. Unlike most people, I have the tools to find out, although even they are mostly linked to Federally mandated rates. When I have a moment, I should look at this.

And no, MassHealth and similar state programmes won't help for long. Once the Affordable Care Act is gone, and the Tinker Toy Trumpian "substitutes" are in place, there will be a seismic shift in coverage for care. Programmes like MassHealth are likely to be snowed under as carriers, especially from neighbouring states, dump their chronically ill  into them. (That happened before ACA to a small degree. I worked at MassHealth for a time, and screening the dumping attempts was part of my job.) There will be more on that later. 

Congress is doing magic that they don't understand. Once they have done it, neurosurgery in this country will be priced off the table, and it's unclear whether my meds will be similarly priced out.
It's a bleak future. For those who try to live with a chronic disorder, it may be bleakest of all.

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