Chronic Migraine & HRT Update March2023

[@eloisepharmacist]

I get the difference between chronic pain and chronic illness. The pain sucks and can reduce my movement and sleep. But my POTS, IBS or illness that prevent my brain and daily functioning is another level!

[@gillbrown3523]

Karen I’m so sorry that nothing is working again but don’t give up there is hope with menopause coming and emgality.🥰

[@LifeasaZebra]

Thanks so much Gill :0) x

[@michellebarriball1536]

Hi Karen, thanks for letting us know how things are going, I have IBS and have good days and bad days but always a constant struggle. Take care. XxM

[@carmnz1]

So sorry to hear about all of your pain. I am 53 and dealing with menopause and have had migraines for 30 years -- HRT was pure hell for me. Estrogen is a killer trigger for migraines. I am on a combo of meds to control migraines now including Anjovy and 2 other meds plus magnesium and vitamin B1 -- it's working. I will never do HRT again. I do hope you are able to find something to help you because chronic migraine is a horrible disease.

[@TheBeautyMaverick]

Thanks so much. Sorry to hear you have been dealing with it all too! Would you mind sharing the other 2 drugs that are helping your migraines? I've got lots to choose from lol. I'm taking B1 also but not Magnesium anymore as I had a blood test that showed I had too much. x

[@lorainemcgillivray77]

Hi Karen I had to wait until true menopause to try HRT - due to endometriosis and recurrent fibroids. I'm a low dose continuous HRT now and have been for a couple of years. I had migraines every month before menopause and in the last two years have had three in total. Mine were very much hormone led and occurred in the week prior to my period for many many years. During perimenopause I had a LOT of gynae issues (including bleeding every day for almost eighteen months) and am so glad to be done with all that. I think perimenopause really started (with hot flushes etc) at around 39 and I had my last bleed at 46 - so a long time of a variety of issues related to fluctuating hormones. I had to wait at least a year for the endometriosis lesions to die off (throughout my abdominal cavity) and can only take a low dose suitable for older/post menopausal women (to avoid reactivating the endometriosis). I'm now 51 and my gynae issues are thankfully a thing of the past, although I do still have urinary and bowel issues from the adhesions and scarring (caused by several surgeries and all the years of the endometriosis growing everywhere). I still get random hot flushes and I had an issue with vertigo etc in 2021 probably due to an inner ear issue (by the time I saw ENT eighteen months later it had mostly resolved). If your migraines are hormone led then indeed you should have a real reduction in frequency and severity. I hope that is the case, but in the meantime I hope other things do help. Best wishes.

[@LifeasaZebra]

Interesting - I also have endometriosis in lots of places and it hasn't been mentioned ever that it should delay HRT treatment (which could just be the GP's not reading my notes!). I had an operation for my Endo years ago but I do think this HRT has flared it up as along with the heavy bleeding is bad cramping just like Endo pain. Thanks so much Lorraine. x

[@lorainemcgillivray77]

@@LifeasaZebra No problem Karen as I am glad the information was helpful. I researched it myself as part of researching whether I wanted HRT or not, but my GP did mention it could. At the time I was willing to take the chance, as stopping it would eventually settle it down again if it did. I’m glad I did try it though as I have been on it for four years now. It was a real possibility though and why it’s such a low dose. I have a family history of osteoporosis and Alzheimers so for me it was the right choice. I think it should play into any decision to try it again however. X

[@jodiecarter2745]

I have been diagnosed with vestibular migraine, and my symptoms started January 2023, and I had pretty bad dizzy, nausea hard to focus my eyes so dizzy I would throw up and sometimes couldn't walk straight especially if I was turning my head to look at anything. it was very disabling and I also thought it was hormone related. I had just come through my first full year with no period and and I was having some menopause symptoms. I went on the hormone patch and about 3 to 4 weeks later is when my dizzy symptoms started very suddenly and then they were pretty constant every day for about 5 months. This was in spite of the fact that I stopped taking the hormone patch right away because I suspected that was the cause. Anyway, i I had about a six months where I had no symptoms and I was back to normal and I assumed that maybe my hormones got back to normal but now just a few days ago my symptoms are back. Like I don't have much of a headache, but I have really bad dizzy, vertigo, nausea. I did just order the Cefaly head shock thing. I hope it helps because I don't want to get on a bunch more medication's that I have to take forever. Thank you for sharing your story and what's working for you.

[@LifeasaZebra]

I had hoped my dizziness would go with HRT patches but alas it didn't. Best of luck to you. I find Cefaly works for the headache but not the dizziness. x

[@michellej5517]

Thanks for the update Karen, sorry to hear you’re still struggling to find something to help with the migraines. I think our fluctuating hormones have a lot to answer for. I remember my mum had horrendous arthritis symptoms during her menopause to the point she wore a neck brace in the car, once she was post menopausal her symptoms improved. Still has arthritis but no where near as bad. I’m on HRT and it’s been really helpful for night sweats, sleep and aching joints. I have read that for some women it can take quite some time to find the right dosage of HRT to help with symptoms and maybe this is the case for you? Dr Louise Newson has lots of information on this.

[@LifeasaZebra]

Thanks Michelle, and it's encouraging to hear stories like that of your Mum! Yes, I did think I may need a higher dose (I was on the lowest) but being as they increased my migraines there is no way they'd give me a higher dose (nor would I take one) due to the risk of stroke. It also doesn't make sense to increase when they are making all things worse such as sleep and head. I have a feeling that in the future I may start them again when the hormones hit rock bottom lol. x

[@BlingyBea]

🙏🏻🙏🏻❤️

[@johannacollins1130]

Hi Karen, do you think a hysterectomy would help? Sorry if that's a stupid question.

[@eloisepharmacist]

I'd happily get mine out!

[@LifeasaZebra]

It probably would help but even though they are now mostly done by Keyhole, they won't do one for me "just for bleeding & cramps from endometriosis". There isn't really any other reason to remove it that would help as I'd actually then need HRT although only the Estrogen part. I think they know the bleeding will stop in next year or so, so why have unnecessary surgery, and I tend to agree, especially with my heart issues, I'd like to avoid an anaesthetic if possible. x

[@pam164]

I'm lucky I'm on Hrt patches and the tablets and I have no side affects apart from weight gain, I was just on the tablet for 6 years but with turning 60 they said patches were safer. Shame it didn't help you with your headaches.

[@eloisepharmacist]

Seen as the HRT has failed and you still have 2 months of wash out from the mab - could you try the SSRI now? Esp if you have no luck with him ordering the new one before July. Although, beware the interaction with tramadol and serotonin syndrome.

[@LifeasaZebra]

I had asked the Neuro about serotonin syndrome and he said I would be ok taking Tramadol (it's only 50mg) with an SSRI but I wouldn't be able to take my Amitriptyline. I'm on 50mg Amitriptyline currently and without it I can't sleep and have real bladder issues, so it's not something I'm keen to stop. SSRI will be a last resort for me. I'm hoping that in the 2 months my hormones might start to settle and that the other things I'm doing continue to help (Vagus nerve exercises, supplements etc) 🤞x

[@krissieflores9475]

What about the mirena iud with progesterone and estrodial patch? I tried the climara patch pro and by the 3rd week last week I was having terrible migraines and taking my maxalt almost everyday… I stopped the patch yesterday…

[@TheBeautyMaverick]

I tried the Mirena but was in agony and ended up in A&E twice so had to have it removed. They think it was because of my endometriosis. I had the Estrogen patch and its what increased my migraines. x

[@krissieflores9475]

@@TheBeautyMaverick okay maybe that’s what caused my migraine was the estrogen in the climara patch… thanks for getting back with me!

[@andrewbiden]

sorry still no relief! out of interest have you tried good quality cbd tinctures , oils etc?

[@TheBeautyMaverick]

Yes I have. It was a very expensive experiment lol. Didn't help for me but I'd actually be happy to try the THC stuff but no (legal) way to get it yet! x