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Anyone else under a neurologist for migraines/headaches?

28 replies

ElphabaTheGreen · 18/07/2017 18:05

If so, how hardcore is s/he about omitting caffeine and pain relief?

My neurologist, who is a highly esteemed, widely-published headache specialist, is adamant that consumption of both must be absolutely nil, in any circumstance, if you get migraines. He even tells patients with arthritis and migraines not to take any pain relief, and rely on glucosamine instead (I know where my severely arthritic mother would have told him to stick it).

I'm finding this terribly hard to sustain and am wondering what others do to cope or if your neurologist says anything else. I haven't touched pain killers for over three months now, for anything, so should be well clear of any rebound analgesia headaches and ride migraines out on a dark room with a TENS machine (which, at best, is occasionally better than nothing). Previously, one sumatriptan and a couple of cocodamol a bit later to mop up the tail end of the headache could help me to function. On non-migraine days, the absence of caffeine is grinding when I have a full-time job, a five and almost-three year old and an endocrinal condition which causes bouts of fatigue - I haven't touched so much as chocolate for the better part of a year. The migraines are no better - I get one every one to two weeks, still.

I've been awake since 2:30am this morning with another migraine which is now subsiding but I'm still sick and headachy. I still have to make dinner, put bins out and put both DCs to bed (DH is working away and I have no family support). A cup of strong tea, a bit of chocolate and two cocodamol could make this so much more doable and I might even be able to catch up on Game of Thrones once the DCs are asleep. As it stands, I'm going to haul myself through my jobs, sobbing intermittently, shouting at the DCs and trying not to puke, then collapse back into bed in yet more darkness with that fucking useless TENS machine.

I'm on Candesartan as a trial preventative - propranolol, topiramate and amitriptyline all gave me dangerous side-effects. I'm on the pathway to cranial Botox, but not before he's tried a few other oral prophylactics first which will be months and months more. I've had a nerve block which was pretty horrible, and I became very ill afterwards with something unrelated so couldn't tell if it helped the migraines, but will try it again if he offers it at my next appointment.

All it feels like he's done is take away my coping mechanisms and I don't know how much more of this (or my long-suffering employer) can cope with.

OP posts:
lloydjam · 20/07/2017 15:08

If i can just add my two-penneth worth. The neurologist in London I saw did recommend cutting back on the caffeine (which i have done but not totally) and really cutting back on the pain medications. I now take x 3 ibuprofen and sumatriptan on onset of migraine and this really can stop it in its tracks. Im feeling ,such better on this. I hope you can find something that works for you. p.s the neurologist i saw before this one was convinced bad sleep was a major factor in migraines and i know if i have a pattern of disturbed sleep i will get one.

ElphabaTheGreen · 20/07/2017 19:37

The feeling like my right eyeball is being pushed out stopped around mid-afternoon today, thanks Viv. Should have a week of niggling headaches on and off now until I get another biggie in a week or so. Sigh. I'll keep on keeping off the caffeine and painkillers for now, otherwise the last umpteen migraines I've had with nothing were all for nought. Then try arguing with him (fruitlessly, I'm sure) in my next appointment, if one ever materialises. I honestly feel like he's putting me through a trial to see if I'm worthy enough for treatment that works, and if I can't hack it, well, it's my fault and I don't deserve any relief.

Strangely he did suggest taking occasional ibuprofen 'if it's really bad' (like I have some 'not so bad' migraines? Confused), but that's a non-starter for me, since NSAIDS with the steroids I'm on for Addison's cause gastric bleeding. I don't know that I'd have bothered anyway - ibuprofen has never done a thing for me unless it has been something musculoskeletal. It has certainly never touched the headaches I get.

OP posts:
CurbsideProphet · 20/07/2017 19:46

@ElphabaTheGreen he used to accuse me of "cheating" and lying about having caffeine Sad

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