After a few months of 90-95% wellness I’ve had quite a few “blips” lately and the last few days fairly consistent vertigo, anxiety, head fog, fatigue and photo and phonophobia. It’s by no means at crisis level but it’s becoming pretty uncomfortable.
So, I’m wondering if this means I need to increase my meds (currently on 75mg of Prothiaden aka Dothep daily) or add something into the mix.
It takes months to get in to see my neurologist (unless in crisis, which, as per above, I don’t think I am. Yet…) so I’m seeing a GP on Friday. Unfortunately my usual GP is also booked up for weeks so I’m seeing my second favourite - she hasn’t treated me for MAV but she’s in the same practice so will at least have my notes. I really don’t know if she’ll have a clue what to do though, as, as we all know MAV is very poorly understood or even known about.
I’ve emailed my neurologist but am not overly hopeful about getting a response (he’s flat out).
Scott probably has a better idea about this than I do. However, I think it’s possible. I’ve heard a few stories here about someone trying a medicine, having initial success, and then seeing it start to wear off. Perhaps the migraine is partly “under control” and the portion that isn’t, is starting to get worse. I think with the particularly stubborn or complex MAV cases, there are multiple separate mechanisms going on, and so sometimes multiple drugs are needed to address all the different “brain issues.”
If your neurologist is the only one who knows about MAV, then I think you should stay on his case until you get a response. Perhaps put a call in to his clinic (or to his voicemail directly) and state that your other doctors are uninformed about MAV, and the medicine seems to be losing its effectiveness, and so you really need his input.
If nothing else, he could just direct you to change the dosage, or if he thinks another drug should be added, he could write up a new prescription for you to have filled and have the dosing instructions sent along to you. Those wouldn’t require much of his time at all.
Bingo! I’ve managed to score an appointment with Halmagyi next Friday the 2nd (unbelievable!). Perhaps our public hospital system in Australia is not so crap after all… :). Hopefully he can work some neuro voodoo on me.
Years ago, I got up to about 150 mg (if my memory is correct) of prothiaden and it was helping quite a bit, I remember it also got rid of the fatigue. Then, after a few months the symptoms came back, I dont know why.
Thanks for sharing your experience. Forgive me if you’ve posted this before but when you had the experience I seem to be having - where the Prothiaden’s effectiveness seems to be tapering off at a certain dose did you then up the Prothiaden to good effect or did it just cut out after a while? And,if that is the case did you switch to anything new and if so, with what level of success?
BTW I took a Xanax (lowest dose) today and it has helped kill some of the symptoms but has also killed my ability to concentrate. I’m zonked (which may explain why this post rambles on incoherently). I may have to go back to Valium - 2.5mg works well and doesn’t wipe me out, just makes me pretty easy going and pleasant to be around
It was in 1991 (just looked up notes) that I took the prothiaden, from April to July. I have written down, it helped, with no side effects really. It only seemed to help at the high dose, but then, slowly, the symptoms all came back and I didnt feel it was worth taking. This was in the days before they put two tablets together though, that could be the answer, depends on how much relief you are getting from them. I went on to try many preventatives after that, the most I got relief from was propranolol (couldnt get above 40 mg) amytriptyline (couldn’t get up on that because of sedation) and sandomigran (got up to a high dose on this but then again, like the prothiaden, seemed stuck).
The neurologist on Thursday, gave me Lyrica which I am going to try when I get back from holiday in a week.
I know, I went through 17 preventatives The neurologist I go to at Oxford is now retiring!
I went to Prof Goadsby in London too.
On the bright side, the neuro told me on Thursday that a lot of the preventatives I took all those years ago are now old ones and they are getting success with the new ones, Topamax, Effexor, Cymbalta, Lyrica, he also liked Epilem. In those days (no computer) I remember writing to quite a few people and the successes were mostly with propranolol (90 mg split) a day.
I remember I had to taper the prothiaden down and not come off quickly, worth remembering.
I think prothiaden is a tircyclic, right? I wonder if it works on the same principles as when it’s used to treating depression. I know a friend of mine who had success on an ssri had to up her dose after a while to keep the depression at bay. My hunch is the body acclimatizes and needs more for the same effect, but great that you’re seeing the neuro, hopefully he’ll sort it out.
Thanks for all your tips. All this information is really helpful and I think will ensure I get the most out of my appointment next week. Funnily enough (happily! Fingers crossed, knock on wood, spin around three times, sacrifice a goat etc) since yesterday I’ve been pretty good (but I’m still keeping the appointment with the doc). I wonder if this week’s CRAZY weather set things off. Weather changes have always been one of my triggers.
I can’t say I know much about this to be honest, only that anecdotally it appears that some of these meds stop being effective over time. Pizotifen was no longer effective for Luke for example and I needed much more Cipramil for an effect on the second round. It also took a lot longer to kick in. Hannah was once well under control on just 20 mg of propranolol but now needs nearly 100 mg. The MAV beast seems to adapt.
Very general but at least acknowledged that it can happen with some meds. I like what was said here though (unrelated):
“Personality” or mood can indeed be affected by a Migraine attack. During a Migraine, Migraineurs can experience mood swings, anxiety, panic, anger, and other mood issues because a Migraine impacts the levels of neurotransmitters such as serotonin and norepinephrine. These issues may last through the postdrome stage of the Migraine, but should resolve after that."
I get that ALL the time. Totally feels like my personality is being high-jacked for half a day.
Bloody MAV - it’s like one of those anti biotic resistant super bugs!!
I relate to the mood changes pre migraine. I often get a weird, general sense of unease and distraction prior, and then just before it hits I’ll feel really nervy and jittery and when it does hit, mad panic. The funny thing (ha ha, hilarious!) is that despite 25 years of this crap it’s like I never learn, I’d say only 10% of the time do I twig that a migraine is on the way. The other 90% I’m thinking, vaguely “gee, I feel a bit weird, I wonder what… shit! migraine!”.
I always thought the mad panic was in the rush to get a handful of drugs in in the crucial few seconds you have, beyond which, don’t bother. I have a friend who has the same thing - the scrabbling through the hand bag looking for the drugs, the frantic searching for lots of water to get them in and the desperate urge to get somewhere dark and quiet and horizontal.
I always carry drugs with me now but I’m a bit slack on the water.
Anyway, I’m hoping Halmagyi will suggest upping the Prothiaden. At least I know this drug works and I don’t get major side effects (other than hideous nightmares the first couple of weeks and inability to get out of bed in the morning).
What I’ve discovered is that he is so charming all the time that even if he doesn’t agree with you he just maintains an amiable neutrality. When he does agree he nods emphatically and says things like “that’s exactly right”. When he’s interested he really perks up: his eyes widen, he leans forward in his chair and starts taking notes.
So, things that were received with amiable neutrality were -
the idea that lifestlye triggers (Rauch’s fat kid) like lack of sleep, or other illness (eg gastro) sets the migraine stuff off
the idea that panic/anxiety is not emotional/mental but physical (I think there’s a difference).
He was interested in:
my recent (about a month ago) migraine with visual aura
that I had accidentally increased my Prothiaden dose from 75 mg to 225 mg for a few days. He was quite astounded at that and that while I felt crap I’d managed to not fall in a heap. From this he decided my metabolism “chews through this stuff”.
He also said that the fact that I’d changed from 3 x 25 mg capsules to 1 x 75 mg pill does make a difference (but he didn’t elaborate and I don’t think for me it did anyway).
He confirmed that 2.5 mg of Valium three to four times a week is absolutely fine “we give that much to children”.
I asked if this “condition” is just constant migraine to which he replied “interesting question” but unfortunately we got sidetracked and then the time was up.
So, where to from here? I’m staying on the Prothiaden, going up 25 mg a week until I hit 150 mg. He doesn’t like to go above 150 mg. Hopefully that will do the trick!
Victoria, it sounds like you have a good plan. I would have been very interested in his view about the constant migraine question. I guess the answer really doesn’t matter but it would be interesting to see what the Drs think about that one. Good luck with the increased meds. Ben
thanks for filling us in, Victoria. It sounds like a positive appt. Interesting how different docs all use different meds. I haven’t heard of Prothiaden (maybe not used in the states) I looked it up and realized that it’s a tricyclic. Do you know why he gives this over amitriptyline or nortriptyline? do you know what other drugs he uses? I wish you all the best.
Thanks for your feedback. During a previous appointment the neuro talked about “cyclic migraine” which I took to mean back to back, so in a constant migraine loop. Makes sense to me, intuitively at least.
Not sure why he goes for Prothiaden ahead of the other drugs. Seems like each dr has their favourites.
The neurologist I go to at Oxford is now retiring!