[migraine] progress, after a fashion

[kaberett]

Neurology appointment took place on Monday; it went slightly better than could reasonably have been hoped for, so naturally I am wallowing in disappointment over not being Magically Fixed.

The medic actually read my cover note! They did not read the detailed information I'd printed out but did look at specific pages when directed and did ask to keep all of it.

My impression is that it was not clear from the GP's referral that it was appropriate for me to be seen by the specialist complex migraine clinic, but this appointment made it clear that in fact it is. I am therefore being referred, which was the expected outcome; the person seeing me was not, unfortunately, aware of how long the current waiting times are. So At Some Point I will get an SMS or a letter or something telling me when I might be seen.

In the meantime, recommendations were:

• continue increasing the candesartan as tolerated up to a maximum of 32mg (which is sort of useful, because GP was for some reason under the impression that it maxed out at ~16mg, and sort of not, because it's... not... doing anything...)


• consider trying metaclopramide instead of prochlorperazine to manage nausea & encourage absorption of triptans


• try naratriptan (even though zolmitriptan and frovatriptan had no discernible effect), and if that also doesn't work regardless of when I take it then move on to trying nasal sprays


• do try a six-week course of magnesium & riboflavin supplementation, regardless of what local neuro says, because hey it's no-risk and it might help


• revisit the topic of oestrogen supplementation, because given that I don't get hemiplegic paralysis the actual stroke risk increase is very small (I did not manage to point out the history of migraine with brainstem aura verbally, which was why I'd written it down, but it's also not associated with increased stroke risk.)


• I can in fact go ahead and take adequate non-optiate pain relief without anyone insisting that my problem is medication overuse headache.

More things that were good: medic did use technical language with me as requested. It became abruptly clear partway through the appointment that they would have been absolutely 100% spontaneously willing to refer me for PoTS investigation, without my pushing for it or asking for it, had my immediate reaction not been "no, I really was just telling you about this morning's panic attack; my heart rate is not normally hovering above 130 when I'm standing quietly." (This is the bit that was actively better than could reasonably have been expected.)

But. Also. I get to keep taking a medication that isn't working for me yet and doesn't seem likely to. The GIC endocrinology appointment that I insisted on having rearranged (it was booked without any input from me at... three hours before the migraine clinic) has been rebooked for... mid-March. I am frustrated and upset about the prospect of oestrogen supplementation because my menstrual cycle has, over the last 12 months, varied from 27 to 35 days, and "start supplementing with oestrogen X days before ovulation/menstruation" is not something I can do with that amount of cycle variation. I had 14 migraine days in January (not including disruption from prodrome & postdrome), and I've been in what's felt like extended prodrome (mood crash, including profound hopelessness; phonosensitivity; some mild photosensitivity; nausea) since yesterday afternoon, even though I'm not currently due a migraine... at least unless they've decided they want to happen for reasons that are not related to oestrogen. And I get to hurry up and wait for an indeterminate amount of time, and I filled out an eConsult for my GP yesterday to update them on the appointment and have been scheduled a phone call for... Monday morning, right before I have a mysterious in-person GIC appointment that "needs to be in person because... they've put down it needs to be in person".

A "good" outcome would be a 50% reduction in symptoms.

I am very tired.

Comments

[lilysea]

do try a six-week course of magnesium & riboflavin supplementation, regardless of what local neuro says, because hey it's no-risk and it might help

I hope it helps! I've had a significant improvement in both migraine frequency and migraine severity from taking magnesium regularly.

I'm surprised about the Riboflavin/vitamin B2 because I've been told by doctors that B vitamins can make migraines worse. Still, I hope it helps you if you try it!

[fyreharper]

Magnesium and B2 help for my housemate! Moreso now that she’s taking it as magnesium glycinate rather than magnesium oxide (the oxide is, annoyingly, the one that’s easy to get and inexpensive… and much less bioavailable)

[lilysea]

magnesium glycinate rather than magnesium oxide (the oxide is, annoyingly, the one that’s easy to get and inexpensive… and much less bioavailable)

Yes, I've had doctors tell me to avoid magnesium oxide as it is much more poorly absorbed by the body and much more likely to cause diarrhoea. I had a doctor say "magnesium oxide is basically PAINT!"

I take magnesium citrate which is one of the ones that a doctor recommended to me

[fyreharper]

“Basically paint” is… quite the mental image :p

[davidgillon]

I get to keep taking a medication that isn't working for me yet and doesn't seem likely to

Magical thinking from doctors is soooo reassuring.

At least no one is going to be trying to claim its not really a migraine anymore. Probably.

[me_and]

So AIUI it is genuinely the case that these meds can have a threshold effect: if you hit sufficient dosage they'll suddenly become useful, rather than effect scaling linearly with dose so zero effect from low dose implies zero effect from high dose.

But even if that is how this goes, that's still a bunch of time slowly titrating up to what may or may not turn out to be an effective dose.

[davidgillon]

Which possibly makes sense giving threshold triggers in the brain and how the whole set of brain chemicals work and can get depleted. But still, we're dealing with doctors and their known tendency to treat the patient as the problem when their favoured drug doesn't work.

[kaberett]

I really do actually trust UCH and I do think this is someone who was taking me seriously and DID talk me through long term options as well as what to do while waiting for specialist input! But yeah, if it weren't UCH I'd be actually non-functional as opposed to just a bit wretched.

[davidgillon]

{{hugs}}

I just noticed this bit: It became abruptly clear partway through the appointment that they would have been absolutely 100% spontaneously willing to refer me for PoTS investigation, without my pushing for it or asking for it .... (This is the bit that was actively better than could reasonably have been expected.)

Wow, you're normally lucky if someone in another speciality has even heard of PoTs. OTOH, UCH.

[kaberett]

Right!

[oracne]

That all sounds extremely exhausting. I hope all this rigmarole results in something that helps.

[chiasmata]

Oh rats, I’m sorry. The appointment sounds… fine, as you say, but the rigmarole around it and having to move your GICS endocrinology appointment… so much faff. So much. I hope it’s a step in the right direction.

[chiasmata]

Ha, clearly having read the comment above me, I’d absorbed “rigmarole” without realising it! Oops…

[kaberett]

I mean, on the upside, it's not really a GIC endocrinology appointment I wanted, so it being arranged after the neurology appointment date was set made it easy to pick one...

[chiasmata]

Ahahaha, ok, fair :D

If I were to email you about hypermobility, would you have brain to reply or not? (Either answer, as always, completely fine ❤️)

[kaberett]

Yes, go ahead xx

[fyreharper]

Yay for appointment going well!

[kalmialatifolia]

:pops in: hey, so metaclopramide is one of the anti-nausea drugs that also has a direct effect on the pain itself (for reasons i'm not clear on).

[kaberett]

<3

[divulge]

<333
That sounds utterly exhausting. I hope so much that one of the treatments makes a difference for you.

[sylvaine]

Ugh. Medical stuff just takes so fucking LONG, and so much of it is unnecessary faff... *hugs* I'm glad it was at least a positive step, and not a "great I'm back to square one", but I do hope the referral happens quick!

[lunabee34]

*hugs*