Oh, Prothiaden, why have you forsaken me?

Ok, so I’ve heard the stories about people who were doing fine on a med, weaned off it and hurrah! stayed in remission…for a while. Then they go back on the med only to find it doesn’t work again. Sadly, that appears to be the case for me now.

I ‘crashed’ again back in November last year (after a pretty good year and med free). I went back on Prothiaden straight away, titrating to 75mg over a few weeks until things were starting to look reasonably promising for a while before another big setback a few weeks ago. So I bumped it up to 100mg, more Valium (and more regularly than I’d like) and I’ve thrown 25mg of Phenergan into the mix as well. Result? Nothing.

I’m back in this ‘cluster’ model of a few good days followed by a few bad days. The ear symptoms are quite frequent - fullness, pressure, humming, muffled hearing and even pain, primarily in the right ear. Some brain fog and unco-ordination and general ‘unwellness’ comes with it. While the pattern doesn’t always follow the script quite often a few days of ear nastiness is followed by horrible rotational vertigo for several hours, the ‘hangover’, and then I’m fine again. Symptoms have been so bad I’m having to take time off work again (although ‘fortunately’ the badness happens mostly over the weekends so at least it’s not too much time off).

Here’s a sample: this Saturday just gone the ears were going, but it was annoying yet managable. Things got worst on Sunday to the point I was extremely uncomfortable and in some pain, increasingly unco-ordinated, muddled and very distracted by the symptoms. Yesterday the ear symptoms were gone but I woke up feeling extremely drunk. I staggered in to work (had to get stuff done for an all day presentation today) but after two hours of nausea and increasing inability to read, type, form sentences, speak, let alone walk in a straight line I left. By the time I got home I could barely walk, was crashing into walls and my entire world had gone from ‘swimming’ to violent spinning. I staggered to bed which offered no relief and I felt incredibly ill. After several hours it finally passed and I emerged with that horrible hang over feeling.

Today - I feel completely fine.

WTF is up with this crap??

I really don’t think the Prothiaden or Phenergan are doing anyting at all - at the very least I would expect the symptoms to be less intense if they were.

I’m seeing Dr Granot again next week where he’ll look at my MRIs and assuming there’s nothing else other than migraine going on I’ll be asking for a different med.

Any and all suggestions very welcome!

Vic,
Well that post scares the crap out of me!! I have heard of this happeneing with several different medications, but haven’t read any reasons why? I should probably research that. That being said, perhaps another tricyclic is in order?
Have you done the Nori route already?
So sorry this is going on…damn damn damn…

Kelley

Hi Vic, I wish I knew what to say but I don’t really. But I do sympathise. Does anyone know - maybe Kelley ? - what is the longest time anyone has been successfully on meds with reduction or disappearance of symptoms?

Brenda

Vic, an afterthought - you say most of the badness happens at weekends. Are they what Bucholz calls weekend headaches? He suggests the letdown from the week’s stress can be a trigger. How about your weekend routine? is it vastly different from in the week and an upset for your delicate migraine brain? Unbelievable to think such a change in routine might trigegr the kind of terrible episode you describe but MAV is a funny old animal that defies logic as we know it! Sorry if this sounds a bit of a lame suggestion but you never know!

Brenda

Hey Vic,

Just wanted to say so sorry you have this crap going on. There’s nothing like escaping from the MAV prison, then being locked up again to make you miserable. A friend of mine who is a nurse got well on pizotifen, came off it, was well for 6 yrs!!! Then she crashed, off work, the lot and the pizotifen did nothing. After a gruesome few months off work she tried pregabalin and flunarizine and is now back at work and doing well. Can’t remember if you tried another drug during this crash before prothiaden, but if not, it does sound like it’s time to hit a new drug. I take propranolol 80 mg and it mostly keeps me ok with loads of things I have to avoid.

I remember you wrote that your doc didn’t think you had menieres going on too - did he do a routine hearing test? I know it’s not exactly an enticing prospect as a diagnosis, but worth covering every base - if your hearing had diminished significantly could be worth trying diuretics along with a migraine drug. They thought I might have both but no hearing loss and it’s sort of become obvious over time I don’t, but I wanted it fully looked in to in case a salt free diet/other drugs might’ve helped.

My guess is you’re just stuck in a bad phase of this MAV horror and need a new drug to kick start you out. I’ve had some shocking relapses, mostly brought on by flying and they do go eventually, although I think the propranolol helps a lot in getting me out of the mess.

H

Hi Victoria,

Sorry to hear you are feeling so rough, I am having a bad few weeks too. All I know is I managed to take the prothiaden years ago (the first time I had some success) but when I got to 150 mg it just seemed to stop working after a while, then, when I tried it again recently I couldnt tolerate the bad headaches it was giving me. The first time I did Sanomigran years ago I had a bit of success with that then tried it recently and no go. I think you need to try something else. Once I get over this crap virus or whatever it is, I am going to give Nor a try. I tried that years ago with no success, so maybe it might work this time!
It could work for you.

Christine

Vic,

Really sorry to hear the meds just aren’t working for you this time. I hope Granot will suggest something else that will work for you.

It does seem that quite a few people seem to have something that works well one time, but then not a second time round. Makes me wonder whether it a) has lost its effect somehow, or b) whether it never worked in the first place, and it was just that you happened to get better with time, but attributed it to the medication as you were taking it at that point? It’s really hard to know…

Anyway, fingers crossed for a great new treatment plan for you next week.

Vic,

Sorry to hear you’re back in this mess again. Since you’ve been off the med for so long, maybe it’s gonna take a little while for your brain to get used to it again. Maybe you just have to give it a little more time for your brain to adjust to it. Hang in there. If you’re having moments of normalcy, I bet you’re not as far off to getting back to normal as you might think right now. Keep the faith, I’m praying for you!!!

Greg

I, unfortunately, do not have advice. But, please know I’m thinking of you and hope so very much that things improve soon.

Thanks for all your support and thoughts everyone - much appreciated.

Greg - interesting point about maybe the Prothiaden needs longer this time round, hadn’t thought of that.

Kelley - Prothiaden and Valium are the only meds I’ve ever tried for migraine prophylaxis so I’ve got plenty of scope to try others.

Christine - I’m happy to try Nori or anything else for that matter!

Brenda - it has occurred to me too that this might be a version of the ‘weekend migraine’. It’s never been an issue for me before but if there’s one thing I now know about migraine it’s that it keeps on changing so indeed, that’s what could be happening for me now.

Hannah - the Meniere’s thing is not off the table yet. Halmagyi didn’t give me an ecog but did other audiology tests. I have some high frequency hearing loss but no worse than it was three years ago. Under Granot’s instructions I had the MRI with contrast a couple of weeks ago but won’t see him until next Friday at which point he’ll be able to let me know if there’s anything else going on. I’m hopeful that it won’t be anything in addition to migraine and that I either need to stick it out on Prothiaden a bit longer or try something new. I’m fairly confident it will pass…eventually…

Beech - I always wonder about the Prothiaden vs remission question. As an individual it’s so hard to tell - but I guess the docs are satisfied that it does something or they wouldn’t bother prescribing it.

Thanks Lisa - I am very grateful that I’m getting ‘good’ days and not just bad - I wish the same for you.

Vic this all really REALLY sux :evil:

Really hope dr granola has good MRI news and a new plan of attack for you

Vic, this may have no bearing on your situation, but I’ll toss it out for what it’s worth. I started feeling generally unwell and had an increase in headaches - with a slight breakthrough in occasional wobbliness - several weeks ago. After developing chest pains and thinking I might have a heart problem (nope, a red herring), it turns out I have reflux which is more pronounced at night. It’s often referred to as “silent reflux” because I don’t get heartburn, so it didn’t present in the typical way. But hubby had a sleepless night during all this and heard me coughing quite a bit - I had developed a slight cough during the day, but he said I coughed a lot a night. I was having “micro awakenings” that I wasn’t aware of, which meant I was sleep deprived for days on end and of course my migraine brain was very unhappy…Is there something that could be affecting your sleep?

And while we’re back to basics, are you keeping well hydrated? Eating on a fairly regular schedule?

A letdown (weekend) pattern might be part of the problem, so is there anything you can do about the stress of your job - either let go of some responsibilities or practice some regular stress management techniques?

Sure hope your situation improves, and SOON.

Victoria, I’m so, so sorry you are going through all this crap (again). I’ve been following your posts & had been so heartened by your remission & totally shocked to read that the Prothiaden isn’t working for you this time. It seems that even if the meds we’re on are helping us, there is no guarantee for any of us that they’ll continue to do so which is so important that we have this forum to support each other.
Hope dr granot can pull you out of this hole.
Barb

Hey Vic, what a bummer for you. Maybe it’s just a set back and just your body getting used to it again? The two I’m on make me like a zombie and that wouldn’t be good in your job (not good in my job either - can’t shoot water straight!!)
Hope the doc gives you some answers
Good luck. Tracey x

Hi Vic,
just wanted to say how sorry I am to hear what you’re battling through right now. I know just how frustrating it is to have a med that’s worked once, not work (or at least not work as well) the second time around - I had this with Pizotfien - complete fix within 3 weeks the first time around - only 65 - 70% gain the second time around - now, 2 years or so further down the road, I’m giving up on a 16-month Topamax trial - going nowhere fast…

Why, oh why, do these drugs keep failing to work once we’ve left them and later return to them…? There’s enough people on here who expereince this - there must be something going on - the plasticity of the brain…does it somehow ‘neutralise’ the effect of a drug over time…?

Anyway, I’m wishing you all the best, Vic - I know how much people like you and Kelley contribute to this forum - hang in there!
Tony.

Really grateful for all your support and suggestions everyone - it means a lot. I seriously don’t know what I’d do without this forum - trying to navigate this shit on my own would be extremely depressing and scary.

Gabrielle - I’m wishing to Zeus I’d never gone off Prothiaden. If I find something that works from now on I’m staying on it. Not worth the risk.

MaryAlice - I’ve never followed the migraine diet (I know, I know… but it hasn’t ever seemed a trigger for me - hormonal stuff, weather changes, flickering lights, stress, sleep deprivation and/or jet lag - yes, foods, not so much). I’m always super well hydrated and Prothiaden actually makes me even more so (dry mouth) and eat regularly. Too regularly! :lol: I am a bit naughty and do sleep in on the weekends so should probably really reign that in, at least for now, but it’s SO hard to get up when I don’t have to for work, Prothiaden leaves me so dopey for the first half hour or so every morning.

Barb - thanks for the kind thoughts - I know you’re a Granot-ess so here’s hoping he pulls something out of his hat!

Tracey - vertigo has resulted in me now being put on permanent restricted duties so I’m not a danger to myself or others. I was always a pretty bad shot though anyway! :lol:

Tony - it really is nuts isn’t it (and so frustrating!) how these drugs can lose or reduce their effectiveness for us. Grrr!

Imagine if Valium stopped working. :shock: Actually don’t - it’s too horrifying to even contemplate…

— Begin quote from “Victoria”

Imagine if Valium stopped working. :shock: Actually don’t - it’s too horrifying to even contemplate…

— End quote

Don’t

even

think

that

thought

:shock:

And right on cue…woke up today (Saturday) with my right ear sore, humming, full and muffled hearing. :frowning: Bit wobbly as well so took 2.5mg of Valium. Made not a scrap of difference. Heavy sigh.

And just FYI I went to get my Prothiaden script filled (still hoping it will work) and the chemist told me it’s no longer called ‘Prothiaden’ as of a few weeks ago. That company doesn’t make it any more so now it’s officially Dothep.

Now that thought had never crossed my mind. Years and years ago when I first took the prothiaden and it worked, no doubt it was prothiaden. These last ones I tried and failed with are Dosulepin 25 mg. Question, were the first ones you had that worked, different to the ones you had these last few months that didnt? Probably nothing to do with it but with us, anything could make a difference.

Christine

Hey Christine,

For the past three years I’ve always had ‘Dothep’ - I ask for whatever the cheapest version of Prothiaden is and so have always been given Dothep. There is a difference between 25mg (capsules) and 75mg (tablets) and Halmagyi did ask me many moons ago if I noticed a difference in ‘graduating’ from capsules to tablets but I never have. I don’t consider myself as someone overly med sensitive.