There see. Sometimes perseverance does pay. Good Luck to you, you’ve been so very patient. In this digital age patience is required so rarely, everything is so instant it has become an acquired skill. Helen
Thank you Helen I have to say your story with propranolol and how long you stuck it out inspired me and helped me to persevere
Hi Lucy glad to see you have few more good stretches.
If you have some time, how long do you notice for the worsening of symptoms to die down after each increase? What type of worsening of symptoms do you get?
When going up to 70 mg it was two weeks or so.
Going up to 80 only a few days. Maybe other factors involved too.
The worsening - dizzier, and more headaches + head pressure.
Had my review with Dr S today:
- Currently on 80 mg nortriptilyne
- I had two good patches last month, for the first time since getting ill with MAV
- However I went into bad patch when my period came (near-constant headaches and very dizzy)
- The nortriptyline isn’t controlling my migraines yet as I’m still getting bad patches
- Dr S wants me to go up to max dose of 90 mg in 4 weeks’ time, stay on it for 6-8 weeks and if no improvement to add in Clonidine (which is apparently particularly effective for hormone-related migraine)
- He’ll review me in 9-10 months’ time
Pleased to see you have been given some distinct plan to follow. With such a gap between appointments just as well to have an alternative plan should the Nori increase not do the trick. As I’d not come across Clonidine before I checked out our Search facility and you’ll find quite a lot of posts referring to it. Seems it was one if your consultant’s popular choices if you look back over time. Helen
You might be interested to hear he said he uses it particularly for perimenopausal migraine problems. I’m not peri yet but hormones clearly play a role.
He said to add in pizotifen if I have bad side effects on clonidine.
I’ve never read a word anywhere else about it. Wonder why. Apparently according to the Mayo Clinic it’s not used much due to side effects. I’ve read the same a dozen times about Pizotifen too. Still you have to try something. We all do. Might be just the one for you. I understand it has some effect on tyramine which is supposed to adversely affect us. Don’t understand the finer detail really. Helen
I have seen him add this drug for another patient on VEDA website along with Effexor and had great results ! Good luck !
Just wondered if you’d started up on the Clonidine. I was reading it’s useful for hormone-linked stuff and also food-sensitive migraine. Today I’m wondering cos I’m really off today, not sure what to attribute it to but I’ve just being checking it out and find red grapes are high in tyramine and I ate quite a few yesterday. Don’t ever remember eating red grapes before. Hence my enquiry. Helen
Haven’t started on Clonidine yet, Dr S first wants me two months on the max dose he set me on nortriptyline, which is 90mg, and I’ve been on for a few days. I’m still getting increased headaches and dizziness around my period and generally dizzy the rest of the month so let’s see if 90 mg helps me get rid of that. Not too keen to start on new med but guess I’ll have to try it if I want to get better.
I think you are showing great stamina regarding your MAV journey. Just the high dose of meds you are prepared to take for a start would have floored me at 1st bay. Like a few of us on here you have been through the wringer but not given in and still saying the words " get better"
I really hope you do soon
Thank you Jo. To be honest I feel like I have no choice. Dr S is my best chance to get better so I’m willing to follow his instructions even if that means staying on a med that’s only giving me slight relief. Im sure he has seen this before and knows what he’s doing… at least, hope so
So… I’ve been thinking I might go and see the GP to ask to go back on the mini pill (Zelleta), which is progesterone only. I was on this pill prior to getting dizzy; I was on it for four years, since after my son’s birth.
I’m conflicted about this — on the one hand I think it would stop my periods completely (I never had my period on it), and to be honest I’m exhausted with the headaches and dizziness that I’m getting around my period. Every time towards the end of my cycle I get a few good days that make me think, hey, the nortriptyline is finally doing something, but then it all goes out the window again with the hormonal trigger.
On the other hand, it was AFTER stopping this pill (and starting it, after my son’s birth, when I was dizzy for three months) that I became unwell 14 months ago… there was also a surgical procedure at the same time so it’s muddled…
I’ve read a lot around the topic and specialists seem to disagree about the pill. “Heal your headache” says pill is massive trigger. But I don’t believe it can get worse than how I feel at the moment when I have my period. I get a headache evolving into a migraine as soon as I do anything a bit active for 2-3 hours.
Also hesitating to take pill because Dr s wants me on this new med Clonidine… if I go on the pill I’d want to stay on nortriptyline only for a while to see if I can have sustained improvement, with no periods to interrupt it.
So yeah… am going to think things through.
Perhaps it was a pity you weren’t told to start the Clonidine next rather than increase the Nori. Presumably you’ve already read this paper. It also mentions Pizotifen as useful for hormone related MAV. Helen
I’ve decided to first give Clonidine a go. If I reach the max dose on that and am still struggling with the bad patches around my period, I’ll try going on a pill that suppresses my periods.
Hi Lucy, my mav started like yours 8 weeks after childbirth in 2016 ( nearly happy birthday to me).
I am on 50 mg nori and 37.5 effexor i used to be dr S patient but i left the uk so drifted away. Anyway 1 year after child birth i did a blood test and was deficient in so many things, fixing this deficiencies improved my symptoms. I still get daily symptoms but non dizzy ones.
Thanks for your message. Sorry to hear you also got this post-partum. Such a tough time to be dealing with MAV.
At what stage did the dizziness start to go?
What symptoms do you have left?
Sorry for late reply
My symptoms started to go a few days after the beginning of the effexor, then got better slowly.
Symptoms i have now: i m still sensitive to fluorescent lights but not all of them and i get a weird feeling in my head but no dizziness, and sometimes i just feel off like now! I also get symptoms more on the left side of the head
How do your vision feel?