After maxing out on the drugs I take (venlafaxine, nortriptyline and Clonidine) I’ve been recommended to start HRT. However I’m feeling overwhelmed with which hormones to take, in which quantities and which method.
In most instances in seems to have made MAV worse but wanted to know if anyone had found that it had helped?
Hi - HRT is so individual. I tried if for a year and it made me worse. My friend is trying it and it has reduced her migraine symptoms. We’re both on amiltripline as well. If you want to try make sure you have patches - that’s what they recommend to migraine people but GPs don’t always know that. Incidentally I’m also trying clonidine but have had to cut back as the increase made me worse. So hoping I can find the magic mix of ami and 25microgams Clonidne twice a day.
Thanks for responding, that’s really helpful to know. Was this patches and progesterone?
Dr S has just said that with his patients on HRT, 1/3 improve, 1/3 get worse and 1/3 stay the same!
Good luck with the ‘magic mix’, let me know how you get on.
Hi - I had patches that were one type for 2 weeks then a different type for 2 weeks. They both came in the same box. My menopause fog is obviously blanking out the details!
Ahh the delightful menopause fog!
I started HRT just over 2 months ago and for the most part have felt more balanced. I’m taking oestrogel every day and utrogestan tablets (2 weeks on, 2 weeks off). My specialist (I had to pay to get HRT as my GP kept saying I was too young!) started me on a very low dose of the gel and I’m now starting to increase my dose slowly. I’m getting headaches from the progesterone but that’s the only real negative at the moment. I think too early to tell if it will have a positive impact on my vestibular issues, but it’s so far not having a negative effect which is great!
Should also mention that my vestibular consultant is very positive about me starting HRT. He feels that if we can remove, or minimise, hormones as a trigger, that can only be a good thing. Appreciate it doesn’t work for everyone however x
That’s so interesting, thanks for letting me know. And that is good that you’ve not experienced any negative effects. I’m really hoping it will be the same for me as I went through IVF earlier this year and didn’t seem to have any additional issues whilst using the estrogen patches.
Sorry to hear your GP wouldn’t prescribe HRT, that is really frustrating.
Can I ask where you are based and which specialist you are working with for the HRT? My GP and neuro are both keen that I find someone who understands vestibular migraine, or at the least migraine. I’ve been around the houses trying to track someone suitable down and the last name recommended to me - Mr Nick Panay, here in London - doesn’t have an appointment until Feb 23! I’m hoping to get started asap as I’m deteriorating by the day and not sure how much longer I can look at screens
I’m in Hertfordshire, I see a specialist called Dr Imogen Shaw in Cambridge. She’s excellent, would definitely recommend. She was part of the team who wrote the most recent NICE guidelines for menopause apparently - she comes very highly and widely recommended. My Neurologist referred me directly to her and I know it’s quicker to get an appointment with her that way as opposed to self-referral. I’ve seen her twice now and both times I chose a virtual appointment as I could get an earlier appointment that way, plus it was cheaper! She is definitely experienced with migraine and has been very positive about HRT having a positive effect on my vestibular symptoms. I’m feeling hopeful! You could drop her an email and see if you think she could help you perhaps? The admin team are excellent and get back to you really quickly. Sorry to hear you’re struggling, it really is rubbish xx
Thank you SO, SO much. I was lucky enough to be able to see Imogen today! She has started me on the same HRT hormones as you. My periods are very irregular so not sure when the start point will actually be mind!
I am still finding it tricky when there is so much conflicting information on HRT. For example, Dr Shaw said today that bioidentical hormones are the only ones worth considering yet others and the NHS say they are NOT recommended:
And a functional doctor I saw was very keen for me to do the DUTCH hormone test which Dr Shaw has said is pointless doing.
It’s good to hear your vestibular consultant is so positive about HRT. My neurologist says 1/3 get better, 1/3 stay the same and 1/3 get worse (which I think is the same as postpartum), but I know Dr Beh states in his Vestibular Migraine book that launched last year, ‘studies have produced mixed results with most suggesting HRT worsens migraine…and… a worsening of headaches in the peri-menopausal period predicts worsening of migraine headache with HRT…HRT for the sole goal of migraine control is not beneficial’
Hopefully, we will be those case studies that prove that it really can be effective!
Thanks again for replying, I really do appreciate it.
So so happy for you! She’s excellent isn’t she. I was listening to a podcast about perimenopause and bioidentical hormones on Monday actually - it was Dr Louise Newson speaking with Davina McCall - she was giving her reasons for the treatment being the best and her frustrations around the NHS refusal to prescribe (I gather cost has a lot to do with it). Podcast was the Dr Louise Newson podcast, episode 098 with Davina McCall, Making a Menopause Documentary. I’ve listened to a few episodes recently, she talks to a wide range of people, worth a listen if you get chance. I have also done the DUTCH test via my Nutritional Therapist and whilst it gave me definite answers and reassurance that my hormones were all over the place and it wasn’t just in my head, the results didn’t really help me medically. It’s helped with nutrition, supplements etc but nothing further. My GP did blood tests after I spoke to her about it but they were all clear, apart from showing I had hashimotos, but didn’t get me any further re HRT etc. Wishing you all the luck, let me know how you get on!
I will check out that podcast (handy when TV/screens are once again becoming problematic ), thanks.
And yes, I will update as to how I get on. Please do the same.
Good luck, sending out good vibes!
Also, my vestibular rehab physio sent me an episode of the Heads Up podcast before I saw Imogen Shaw - look for the Perimenopause and Menopause Migraine episode. It was really helpful. My medical team in Cambridge are pretty amazing I have to say (I also see my Neurologist and vestibular consultant there) and are very supportive which I know isn’t always the case. My brain fog is terrible today but have had my dosage tweaked after my HRT review so it might take a while to settle.
I love a podcast!!
Well, I started HRT 3 weeks ago and I realise this is still VERY early days to be mentioning but I found the first two weeks on the low dose of oestrogen gel (‘1 pump’) fine, in fact, maybe even had some slightly better patches. I then added in the progesterone a week ago and have experienced a huge drop in my condition over the last few days. In fact today I have been in tears most of the day, feeling very anxious and migraine symptoms (dropping sensations, vision feeling off, phonophobia and photophobia, tinnitus…) are much worse and am unable to leave the house. I know it’s probably impossible to know but my hunch is that it’s the progesterone that is causing the issues…however, I know I can’t take oestrogel without progesterone.
Hi Natty, I’m now on my 4th cycle of my HRT and this is the first one that I have felt pretty normal throughout. My third cycle was particularly difficult VM wise. She told me 4-6 months to see real progress. I would drop Imogen an email with your concerns - she’s very speedy to come back.