mme_hardy: White rose (Default)
Three different preventative drugs for migraine are in late-stage trials and doing well. This is a big damn deal. There are drugs that are abortives -- once you start feeling migraine symptoms, you take them to drastically reduce those symptoms -- but all the preventatives are off-label for something else.

To give you some idea, the preventatives I take are:
  • Lyrica (Federally approved for seizures, neuropathic pain, and fibromyalgia)
  • Botox (Federally approved for torticollis, lots of other clenched-muscle conditions, and various kinds of cosmetic uses)
In the past I have tried beta and calcium-channel blockers (high blood pressure), multiple anti-epileptics, and IIRC one antihistamine that had to be special-ordered from Canada.

The migraine-specific triptan drugs, when they were introduced, were a revolution: instead of blunting the pain you were short-circuiting the migraine cycle.   I have hopes that one of these three drugs will be a similar game-changer for prevention.  Fingers crossed.

In the meantime, I'm overdue for a Botox treatment; will schedule tomorrow.

mme_hardy: White rose (Default)
Last week I forwarded my doctor a link to a JAMA editorial about one of the medications I was taking, a proton-pump inhibitor; JAMA recommended not taking it for the long term. I was careful to phrase it as "What does the doctor think about this study".

Here's what I got back.

Thank you for sharing your concerns. Often information like this may catch someone's attention. All medications have side effects and risks as you know. The indomethacin carries significant risk of GI bleeding and death. Long term indomethacin is rarely recommended. In some cases we have migraine patients on indomethacin but with caution. I also have concerns you consume alcohol every day which increases your risk of ulceration and GI bleeding. I do not recommend you coming off PPI. I do however always recommend change in lifestyle: Limit alcohol use, or better avoid it. Exercise every day, Work on weight loss, hydrate and stay away from processed foods. These recommendation have only positive benefits and could lead to medication reduction which would help you in the long run.

Things the doctor has never told me before:
1. Long-term indomethacin use is risky.
2. Alcohol increases my risk of ulceration and GI bleeding.

Aside from that, if I could exercise every day, I wouldn't have fucking migraines, now would I? I am doing my best to exercise on days when I'm not sick. I eat meals cooked from scratch (I'm assuming bread and cheese don't count as "processed foods", but who knows). And saying that eliminating alcohol "has only positive benefits" is bullshit.

This doctor also told me on my last visit, "We don't like to see you taking pain-relief medications more than 15 days a month." I pointed out that I had migraines more than that, and had had since I started seeing this practice 5 years ago. She suggested that I should consider not taking pain relief until the pain reaches at least a 4 out of 10, and I'm trying that now.

This really smells to me like a practice getting tired of a non-responsive patient. Sigh.
mme_hardy: White rose (Default)
Several times in the last two months I've had runs of 3-4 migraine-free days in a row. This never happened. Never. The new med we added to the mix in early summer seems to have helped.

Neither my doctor nor I is happy with the number of different drugs I'm taking. I suggested we start a slow taper off the one I hate worst, Lyrica, which steals my words and my brain and causes continuous weight gain, plus the exhaustion that keeps me from exercising much.

Well. Last night I had the worst migraine I've had in over a year, and the painkillers didn't work. Usually I take preventatives all the time and abortives in the event of a migraine, and the result is that migraines sap me but don't hurt a lot. Last night I was thinking over and over, "I wish I could die", for hours, and vomiting frequently. Today I'm still in pain, although bearable.

I think Lyrica stays in the granny box at its old dosage.
mme_hardy: White rose (Default)
I've been having therapeutic  Botox injections for migraine for years.   This treatment was discovered by accident, when cosmetic Botox users reported to their doctors that their migraines were getting better.  Here's a diagram of the basic injection pattern (scroll down).   I think my doctor uses a slightly different protocol, because there were definitely more injections than that.

Anyway, the purpose of therapeutic Botox is not to prevent forehead wrinkles and crows' feet, so the points injected are different.   In all my previous treatments, I haven't found that my muscle mobility changed to speak of.   This time, it's different, and it feels so *odd*.  I can't raise my eyebrows more than a couple of millimeters.  I can frown, but I can't express incredulity.  (Words will no doubt continue to have the desired effect.)   It feels as if my forehead is a mask -- not wearing one, but is one.   I didn't have forehead wrinkles to speak of, but I certainly don't now.

It's a very spacy feeling -- not like Novocain injections, which make an area completely dead to sensation, but as if the skin is still there but has become rigid.

Anyway, reports from the physical sensation front.
mme_hardy: White rose (Default)
  • I got my Botox-for-migraine treatment yesterday.   Oog.
  • I also signed up for a study of migraines.  This one is "what can we find about migraine sufferers that distinguishes them from controls", not to test a treatment.   I'll be filling out a questionnaire, giving blood samples, spending an hour in an fMRI machine, and having a spinal tap.  I'm pretty oogy about the last one, but this research is important to me.  As I told my doctor (the head of the study), this is my gift to the future.
  • It's garden season.   My daughter is scheming with me and we're planning to keep our efforts small.   This house came with a gorgeous planter on the back deck which was slowly abandoned.   I'm replanting it with a mixture of herbs and beautiful things.  I also have two geraniums (the official kind, the blue ones; the red ones you're thinking of are actually pelargoniums), a pretty succulent, alyssum, and, er, two marionberries that seem to have jumped into the cart when I wasn't looking.  I also ordered a chinotto to replace the one that died 3 years ago when the sprinkler system failed.
  • Another of my favorite nurseries has bitten the dust. :(  I found a new one, Wegman's, with an excellent selection, but it doesn't have a beautiful soothing tree-lined lot like the two that went out of business.   
  • We're heading into a horrific drought.  I'll be dialing back the sprinklers to two days a week; the back terrace is already on drip, and only the two tiny patches of grass in front and back are pop-up sprinklers.  I'm also having a drip sprinkler line run to the dwarf navel orange in the patio that has been slowly dying without winter rains.
  • Long-term, I'm starting to think about alternate ground covers for the two patches of lawn.   I would love to do the front in thyme, because I already have the plaque saying "You can do anything you like when you've all the thyme in the world."   I note that most of the groundcovers recommended in xeriscaping articles are actually horrifically invasive and thus inappropriate for California.  This is true even of the California xeriscaping articles.
  • We're paying to have the fscking fan palms that seeded themselves in our back yard removed.   This frees up an entire corner of the yard for something.   Bet on fruit trees.   I'm leaning toward a succession planting of small trees; probably apriums, which I love, a long-harvest pluot, and a nectarine.  That, I promise, is for next year (at least).
  • The downside of asking for a climbing rose to be replanted under your bedroom window is having gardeners dig under your bedroom window.   This is a rose that I bought at my favorite nursery, Roger Reynolds,  closeout sale :( :( :( that was labeled as Climbing Don Juan.  Since Don Juan is a red rose and this one is a pleasantly-scented white, I suspect label swapping.  Anyway, it's a nice rose.
  • Most of the roses in the back yard have survived years of neglect.  Go team old roses.   The Old Blush, an 18th-century rose,  on the garden wall has had a few blooms year-round.   One of the roses has several seedlings around it; I'm going to watch for them to bloom and see what turns up.  (Roses don't come true from seed; if you want to propagate a rose, you have to do it from cuttings.)


mme_hardy: White rose (Default)

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