Long Covid Diaries: new Medical Treatment (and some blog house-keeping).

It's been about five weeks since I switched Digressions to Substack and last wrote an entry in my covid diary. (For my official "covid diaries" see here; here; here; here; here; here; here;  here; here; here; here; here; here; here; here; here; here;  here; here;  here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here;  here; here; and here.) It's time for an update on both. Also, some blog house-keeping at the end.

First, my new/replacement neurologist at the NHS long covid clinic in London was unhappy after listening to my narrative. Short version: much recovered by end of January; teaching went well in February/March, but have struggled since. Yes, I am doing much better since the last time one of his colleagues saw me (with apologies for canceling multiple appointments with me). But no, I shouldn't be taking naproxen so frequently at this stage in order to manage the effects of migraine.

The neurologist's concern was straightforward: I am not nipping the migraines in the bud, but rather masking symptoms.  Bottom line, he wanted me to try out the treatment plan the long covid clinic had prescribed to me in June 2022 in order to get the covid induced migraines under control. These are primarily triggered whenever I am cognitively multitasking, that is, socializing, for any amount of time.

In addition, I have noticed an odd new symptom. It's a kind of tinnitus when I lie down to go to bed when I am fatigued. The low grade, but persistent noise 'sounds' like an air-conditioner, generator, or vacuum-cleaner in the distance. Luckily, it doesn’t prevent me from falling asleep because the simple meditation my sister taught me still works like a charm. After some testing with sound-meters and earplugs, I realized the sound is purely cognitive. I only 'hear' it at night when I go to bed, but again only when I am especially tired or migraine-y. (Upon reflection, I suspect I have had this symptom since last Fall and I hereby apologize to the Kimpton hotel in Cambridge in insisting on a room change because of the outside noise I heard.) 

Problem is that the official June 2022 treatment plan involves rather serious meds, which were originally developed to treat high blood pressure, depression and/or epilepsy--all have serious (cognitive) side effects. I have not been especially eager to try any, especially if they prevent me from teaching, reading, and writing.

Now, a weird big glitch in the NHS is that the specialist generally does not send you home with the meds required (unless it falls under urgent care), and so I would need to go back with my treatment plan to my GP before I could start any of the treatments the neurologist prescribed. And at the moment any non-urgent appointment at my GP takes a lot of time to schedule. So by the time I met my NHS GP, I had devised an alternative plan.

As it happens when I first met my better half she suffered from awful, debilitating migraines that could last three or four days. But after a while she started a new treatment that has been very successful for her: Botox shots in the neck. Basically one poisons the muscles with Botox so that they can't reinforce a developing migraine with extra stress, and one cuts short the migraine cycle. In the NHS this is an approved treatment for migraine, but only after you try treatment with all the pills first. (Unfortunately, in Holland it's not an approved treatment of migraine so I can't get coverage there either.) Both the NHS neurologist and my GP warned me that if I skipped the pills I could never get reimbursed for the Botox shots, even if it worked. But the GP encouraged me to try it anyway, because he understood my apprehensions about the treatment plan.

So, about twelve days ago, I found myself in the most beautiful physician's office I have ever been in with one of the leading cosmetic eye surgeons of the UK (an old friend of my better half, who -- it was my birthday after all -- paid for my first treatment). fter going through the treatment with me, and ruling out some other medical issues, I got my first eight Botox shots at half dosage. (No, I didn't add a secret cosmetic treatment for eyes or chin!) The plan is to give it two to three weeks, and then, if necessary, add another dosage. If the treatment works, I would need the shots about two or three times a year.

After the first week of shots, I wasn't so sure. But in the second week I am seeing grounds for optimism. So, I'll report back later this Summer if the Botox shots have improved the quality of life structurally. It would be nice if it did because I start a full load of teaching in September. Before then, I am also key-noting this week in Utrecht and chairing a job search in the next few weeks so it would be nice not to live on Naproxen during this period. (I am not counting on that because I pulled a muscle in my back yesterday morning and I have had painful back spasms during the last 27 hrs! Hopefully, I can stand for my keynote on Thursday!)

So much for the Covid diaries update. As hinted in the previous paragraph, I expect to do almost no or very infrequent blogging until the second week of June. (This is the blog house-keeping.) Apologies for that in advance. 

I want to close with sincere thanks to all the subscribers to my Substack. The good news is that since I switched to Substack, I seem to have doubled my readership, especially because a sizable chunk of my audience continues to read these posts at Typepad (where, for the time being, I re-post them a day later).

Unfortunately, less than 10% of my substack subscribers pays, so it's too early to contemplate a career switch or even reducing my professional appointment. I had been kind of hoping to blog my way to more structural sabbaticals as a way to manage my long covid on my own terms; but so far no cigar.

Going forward, I will experiment with giving my paying subscribers -- thank you, you are the best! -- more frequent, exclusive content during the Summer. (I have done that only once during the first month.) If you have any suggestions or requests, please don't be a stranger.

Either way, I am really enjoying the more intense engagement that Substack generates. I receive a lot more correspondence again about my near daily musings. Merci. And watch this space in June.