Standing at a crossroad?

one week is nothing when it comes to trying a new medication. the fact you’ve already experienced some marginal improvements is amazing and you should be encouraged. many wait several weeks or more for an effect, and up to 12 weeks for full benefit.

i’d recommend keeping a symptom diary so you can review your progress. it can be encouraging and get you out of your head when you have momentary dips.

i’d be encouraged by noticing a slight effect at a low dosage after only one week though.

if you absolutely have to go back to work, i’d recommend making sure you manage your stress well and to prioritize your well-being above your job. money exists and people need to live, but you should do everything in your power to prioritize your health right now.

good luck – may things turn around for you as soon as possible

1 Like

I agree with sheepdog_lord - prioritiize your health over your job otherwise you could end up in a vicious cycle of work being a trigger for your symptoms. Work places have a duty of care to their employees and by law have to cater to your needs. I don’t know where you work but there are things you can ask your workplace to do for you such as altering the lighting in the area where you work, altering your computer screen if you use one, altering your working hours, letting you go home if you need to.

There’s more info here: Migraine and work - The Migraine Trust

I hope things improve for you soon. It can take months for a new drug to have an effect. Good luck!

2 Likes

Thank you :hugs:

You’re right, I think I was just in a bad patch with my menstrual period and couldn’t see the wood through the trees.

I have noticed more visual vertigo the past week than I think I normally would, but trying not to worry about that. Other stuff has eased. I did wonder if it’s from reducing the nortriptyline (which has a vestibular suppressant aspect I think).

My neuro has said that I have two options now:

  1. to increase venlafaxine to 75mg

Or

  1. add in Qulipta which is an anti-CGRP medication alongside Venlafaxine

Seems that I’m destined to go through the medication decision tree again ha ha!

Maybe one good news, my neuro has also said I can try frovatriptan for menstrual migraines, or if I’m going with option 1 above, then to try Rimegepant for period days.

I wondered, with the anti-CGRP why we have to have failed three migraine preventatives before being allowed to try it on the NHS? Is it due to riskiness or unknown long term effects? I couldn’t find anything online as to the reason.

I wish I had a crystal ball!

@sheepdog_lord how are you getting on? I read your post the other week about an unplanned Venlafaxine withdrawal, I hope that’s eased for you now/you managed to get the prescription.

Thank you so much @MissMigraine! :hugs:

I definitely hear your and sheepdog’s words. I’m speaking to work next week so will see what I can do. I hadn’t come across that webpage on the Migraine Trust - thank you for sharing it.

I posted above the plan that my neuro has suggested, so it seems the world has thrown another medication decision at me again ha ha.

How have you been lately? I do hope well :blush:

the anti-CGRP thing is likely due to the cost of the medication…they were all developed mostly in recent years and are still under US drug patent, which makes them exceptionally expensive for healthcare payer systems (NHS, american insurance companies, etc).

I would consider going to 75mg of venlafaxine and then see if there is an effect. after that you consider adding the qulipta (my very non-medical opinon – just what i would do).

As for how I’m doing, I’m quite well. After I got back on venlafaxine after my brief withdrawal, no problems since. I’ve had maybe 1-2 attacks a month this year, with maybe 4 of them being worse than ‘mild’ for the most part. I think the summer weather and brighter days are helping me a lot.

Appreciate your thoughts, thank you! I think I might take a few days to mull it over. I definitely see the point for increasing Venlafaxine first, seems to be the most methodical way to go.

Interesting point on the anti-CGRPs, makes sense re. price and making patients go through three cheaper options first.

Glad that you’re doing well. Out of interest, how are you symptom wise between attacks?

1 Like

Over time, more and more normal. I had a lot of ‘inter-ictal’ symptoms between attacks before that would take a long time to recover from, but as time has gone on i’ve found that I return to my baseline really quickly. Initially I had a lot of memory and cognitive problems in the inter phase, but that’s mostly resolved. I now have 1 day more or less where I would consider myself ‘postdromal’

That’s amazing! Would you say your baseline is relatively “normal” now then?

pretty much…at least enough to not complain about it haha. vertiginous diseases like VM and others can almost be thought of as diseases of despair – before you start to get better you have to believe you’re going to get better. thats not to say its a purely emotion driven disease, but it seems highly correlated. psychological and neurological health go hand-in-hand

1 Like

I’m so happy for you! Thanks for sharing. :blush:

I totally agree… I’ve been suffering with a lovely bout of hay fever the past week, which no doubt has aggravated my symptoms - blocked nose and ears popping.

I also find that after I allow myself to dwell in the despair, I’ll mentally feel slightly better (after a good cry), but my physical symptoms will most likely be worse.

When feeling down, I’ve tried so many forms of deep breathing, but as I’m an overthinker in life, I tend to monitor if the deep breathing is actually working, which then just makes me more anxious ha ha.

1 Like

continuing with the venlafaxine will probably help create some emotional space for your anxiety to heal. thats really how i interpret why antidepressants work in some people. they dont necessarily fix your anxiety or depression, but they can help to pull you out of the cycles of negative thinking by creating this ‘emotional space’. I think thats what a lot of people complain about when they say these medications are ‘numbing’ – i think its more of a feature of the medication and not a side effect. over time with this space that’s created and the right attitude, you can begin to heal.

they’re by no means the only way out of depression/anxiety, but they can be a powerful tool for a lot of people.

in my personal experience and observing others with this condition, people with vertiginous diseases can be more intelligent than average but also have higher neuroticism. when i say ‘neuroticism’ i don’t mean the typical condescending use of the word – its more of a tendency to experience and fixate on negative experiences. i think its this combination of higher intelligence and neuroticism that creates these really powerful cycles of self-condemning thoughts. we are more aware, but also can be more negative, and this combination of traits is disadvantageous to recovering from vertigo

I can relate a lot to the cycles of negative thinking. The problem is, I think, that brains have a fantastic ability to look for evidence that supports an assertion/thought, regardless of how rational it might be/not be.

I really do agree with all of this. The only addition I might have, but interested in your thoughts, is that from what I’ve read on here, but also mainly reddit, there might be a personality factor too, with a degree of control lost where someone is unable to meet a self-perceived standard about how life should be, and so are failing, which isn’t true, ie no longer being able to pick their kids up from school. Not everyone of course, but I do wonder if that, coupled with the neuroticism and higher intelligence creates a strong storm.

I came across this webpage this week, and thought it was a useful resource for going through the main meds for VM. thought it would be good to post here:

https://entad.org/resources/patient-information-dr-teixido/migraine-management-for-otolaryngologists-advanced-migraine-management-pearls/

My negative thinking cycles have been running on high today. I’ve been finding it more so difficult today to accept this is happening and I want to be normal or at least not have these vestibular problems. I went for a quick walk wearing a baseball cap which I think has made me feel off today now from messing with my visual field (couldn’t find anything on this forum about baseball caps, so thought it was worth mentioning in case anyone else has issues like that).

1 Like

Hello! Thought I would update here.

I initially decided to go for adding in the anti-CGRP medication, but then had a last minute decision switch to increase my venlafaxine.

I’m on 50mg at the moment, and have been for almost a week now. It’s not been great and quite a tough jump - feel more dizziness moving around for sure. Hoping it will settle with some time. Yesterday and today haven’t been good days though which sorta sucks. From reading others’ personal stories with Effexor, it seems that an increase in symptoms can be typical.

I wondered if anyone has any issues sleeping on their sides? I can’t seem to do it or lie flat still. Or bending their head, say to look at their belly button?

Part of me thinks it might be BPPV related as last year I rolled over and had a strong spinning sensation. Only lasted a few seconds but I was off for a few days. Wonder if VM and BPPV are “best friends” to an extent. Although I’ve been tested in the Dix hallpike before. Could “subjective BPPV” be real?

Hope everyone is doing well.

Look, most of vestibular medicine is defined by “symptoms” and “theories” … BPPV does not exist as an objectively observable physical manifestation in your inner ear, it’s just a story told by medics to explain something (just like the rubbish pass off “it’s a virus”). It’s a reasonable theory, but there are big holes in that theory.

I’m becoming more and more convinced, this entire condition (for most people) could well be down to some kind of inflammation, constriction or blockage in the ET that is causing alternobaric vertigo - the inner ear is put under unbalanced pressure on one side and your brain interprets that as spinning (ie there is nothing whatsoever wrong with your inner ear!)

Open to debate on those linked Topics!

venlafaxine will cause exacerbated symptoms after dose increases. they lasted about 1-2 weeks for me. a note about CGRP medications: they seem to be much more efficacious for women than men for some reason, but women in general seem to experience more refractory disease