complete despair where to go now - preventing & management!

[Janeylou]

hello fellow migraine sufferers, I’ve had migraines all of my life, it completely sucks, I’ve had times in my life where I’ve had months without them.

I had to have my ovaries out a couple of years ago & ever since then it’s been hell. Menopause at 38 not fun! I have severe endometriosis which makes HRT complex for me as I wonder if I had more oestrogen my migraines wouldn’t be so bad 😳😩

Tried all the meds with the GP at the time & they never referred me to my nhs neurologist & waits 2yrs! I took matters into my own hands last year thought I would pay privately to see a specialist at national migraine centre, started Ajovy, it worked for a while but for the past few months I’ve got my chronic migraines back 😩! I feel so depressed & drained! My BP has got high even though I eat clean & exercise.

I just am so exhausted by all of this, my migraines wipe me out & the vomiting & pain are just awful. The headaches linger & triptans don’t always work I’ve got various ones! I then don’t exercise & basically stop various things.

Due to my desperation I saw my GP this week she has recommended candesartan & I demanded for the acute migraines to prescribe Vydura - Rimegepant .

Today had my consultation with the national migraine centre & next option she said try the candesartan as it’s free on the nhs or try Atogepant (Aquipta - but OMG it’s more expensive than the ajovy I was buying 3mths at around £600 plus these Atogepant (Aquipta are £300-£400 per month 💰💰🫤😩

Any experiences of using candesartan or Atogepant (Aquipta) for prevention?

any experience using Vydura - Rimegepant for acute treatment?

I just wish something would work! Like I’m sure many of us do!

Thanks in Advance

[Wrexham16]

Hello. I am in same desperate state myself so I know how you feel. The problem is that treatment is such a lottery. Candesartan did not work for me but I have a friend who was so ill with migraine that she was medically retired from her job. This was before Candesartan was being used for me migraine and now she is taking it she would say she is "cured". It must be worth trying especially since it is free. I hope you find some relief soon.

[Janeylou in reply to Wrexham16]

Sorry to hear your suffering too, it’s just not fair. That’s interesting, I know it’s all personal how meds can work, but when you’re desperate you research & I like to hear how others get on. I don’t expect miracles but less severity would be good. Todays one was one of the worst like I use to have as a little girl which makes me question my oestrogen levels! Complete mind field 😩 I hope you find some relief soon ❤️

[designer111]

HI, Im using Rimegepant as a preventative. had it for 2 months and just starting to kick in. I had migraines every week, now I have low grade headaches, but every few days and immense tiredness, wondering if the tablets are still trying to kick in before they get better. Generally though, most preventatives do not work for me.

[Roonie22]

Completely feel you! I’m in a similar position. I’ve been taking Aquipta for 3 months. I’m getting it privately (through the National Migtaine Centre) as it’s not available yet on my NHS trust. It’s costing £220 a month, so crazy expensive but less than you’ve been quoted.

I’m not really sure that Aquipta is helping much. I’m having digestive issues as a side effect and my headaches haven’t improved much (I think I was hoping for a miracle!). It strangely, has improved my mental health (which doctor says can be an effect of Aquipta). My plan is to continue with it for 6 months as improvements can happen upto the 6 month mark.

I tried candesartan just before taking Aquipta. My blood pressure is naturally on the low side, and just 4mg daily of candesartan made it drop further. I had side effects due to low blood pressure so was recommended to stop taking it.

For years, before becoming chronic, amitriptyline and atenolol controlled my episodic migraines. Have you tried either of those?

[Janeylou in reply to Roonie22]

Thank you for your reply. It sucks all this trial & error, migraines can be so debilitating. I’ve had an awful one today just easing & none of my meds helped 😩

I’ve had amitriptyline I couldn’t tolerate the zombie feeling all day it went on for weeks & Propranolol I didn’t see great improvement but the side effects were not good.

My BP is high over the last couple of months which is really annoying as I exercise & heat clean! My headaches can wake me up which is new since surgical menopause.

I’ll have to give it a go & see with tweek of HRT.

I hope you regime works

You just get so desperate don’t you 😩 x

[MarieTM in reply to Roonie22]

Do you mind me asking what the digestive issues are please? I’ve been offered it but am trying to weigh up the pros and cons. Thank you.

[Roonie22 in reply to MarieTM]

Stomach discomfort/pain, constipation, indigestion. I’ve been prescribed omeprozole and gaviscon advance. Sometimes these medications help, sometimes not. I haven’t found a way to solve the constipation yet. I’ve increased fibre, take magnesium, drink lots of water…

If you’ve been offered it on the NHS, I’d give it a go. I think if it was helping my headaches more, the side effects might be more bearable. But adding another ailment is making it harder to continue with

[MarieTM in reply to Roonie22]

Thank you. I have suffered with constipation with lots of the preventatives that I’ve tried in the past so I will ask about taking something alongside to help with that.

[Mavary]

Hi! Just to say I had migraine from about the age of three until I was in my seventies. Luckily at long last they went. I do however get aura migraines on the odd occasion. My Drs prescribed Naramig which was fantastic. An hour after taking it the pain had gone. It does leave you a bit groggy though but better that than a full blown migraine. I wouldn’t drive after taking them. Anyway good luck and I hope like me your migraines will go one day.

[Janeylou in reply to Mavary]

That’s scary until 70 😩

Mine started at reception so 4/5yrs old, they were awful, eased somewhat when my periods started. I felt they got less intense in my 20s & 30s. I wish I knew why but I’ll plod on trying things

[Mavary in reply to Janeylou]

I’ll give you a tip. In fact two. Drink plenty also if you get a migraine drink a strong coffee. I don’t know why but it does help. If you are anything like I was you would try anything. You’ll have to let me know if it helps. Mind you nothing worked on me apart from the Naramig the Dr gave me.I sometimes get a headache now and nothing touches it other than the Naramig.

[Mavary in reply to Mavary]

The headache lasts for days. Not a really bad headache but a niggling one. Anything is better than a full blown migraine.

[Janeylou in reply to Mavary]

Yes you do get desperate, I’ve heard about coffee, I often worry it may make it worse but I’ll try! I drink plenty of water but must admit I probably drink less in the winter

I’ll have a google of Naramig in the uk.

Thank you

[Mavary in reply to Janeylou]

You’re welcome. I hope it helps. Anything is better than nothing.

[Mavary in reply to Janeylou]

Hi Janeynlou. I’m in England and my Dr prescribed them. Different things work for different people mind. But if they give you them I hope it gives you some relief.

[designer111 in reply to Mavary]

Agree with this about drinking water. Not always, but a lot of the time once I feel I fuzzy head and I know a migraine is on the way, I drink 3 full glasses of water (even if I wake in the middle of the night with a bad head, I do the same). Normally the headache goes. Its a good success rate for me. Its cheap and not a lot effort to see if it will work.

[katiewalsh]

Hi. I’m sorry you’re having so many bad migraines. Can you get Botox for Migraines in the UK? I’m in the U.S. & just got it for the first time in November. It reduced the frequency of my migraines & gave me fewer really bad ones. I’m on Medicare which fortunately covers the cost if you qualify. It’s injected in totally different places than Botox for cosmetic purposes. The other thing that helps me sometimes is extra strong (highly caffeinated) coffee. Good luck. Katie

[Janeylou in reply to katiewalsh]

Hi, yes I can, just have to travel, there are not many local to me, sadly I am not under the nhs neurology dept my GP will be doing a referral but the wait is long. I’ll research this today, my migraine starts in my neck & shoulder 🤔

Thank you

[katiewalsh in reply to Janeylou]

My migraines green start in the same place & a drug called Tizanadine can often stop them from developing. You just have to make sure it’s not too high a dose or you can get groggy. Good luck.

[1518]

Hi, so sorry you’re suffering like this it sounds miserable. You’re asking about Candesartan, I started on it about 7 years ago and it’s the only thing that has ever worked for me. I now don’t take any triptans, if I do get a migraine they are mild and I will take 900mg of aspirin if they are anything other than mild. So I would give it a go, but as you well know some drugs work for some and not for others. I will say that it took about 8 weeks of being on the Candesartan for me to see a difference and I had to increase the dose to get the best effect, but had to balance the dose as I had low blood pressure and it lowered it further. You have an advantage, of sorts, as you don’t have low blood pressure. My heart goes out to you it’s so horrible to be ill all of the time like this, wishing you the best of luck with what you decide to do.

[Janeylou in reply to 1518]

Thank you for your reply. Yes my BP is starting to increase but when in pain free it’s ok, trouble is that’s not often. I’m hoping it will help, x

[Dellajoy]

Hi Janeylou have you had a look at Angela Stanton migraine protocol? You can find her on Facebook. It’s a nutrition based approach and although it’s not easy it does work. It’s more difficult if you’re in the uk as I am getting tests etc but it has helped me enormously.

[Janeylou in reply to Dellajoy]

I will take a look

Thank you. I have read about the link between gut health & migraines

[Hidden]

So sorry to hear how much you're struggling. I've taken everything anyone has mentioned in this thread (I read through them all), and have settled on Ajovy, Rizatriptan and good old aspirin. One thing that helps me is something my neurologist said: A migraine brain will always be a migraine brain. In other words, there isn't a cure, but there are things to make it easier to live with. Accepting that has helped me, even though it sounds craven

I'm interested to see that you had severe endometriosis. Me too. And hyperthyroidism (Grave's Disease). I thought this was all bad luck, but am increasingly seeing online that these three things are linked and having one makes you more likely to have one or both of the others. All autoimmune conditions.

Good luck, Janeylou - I hope you find something that makes all this tenable for you.

[Janeylou in reply to Hidden]

Hi there, thank you for your message. I am starting to think I need to accept it more, but at times I find it difficult especially with endometriosis & early surgical menopause which has been an absolute nightmare! If it’s one it’s the other. It just feels like a life long battle.

I really would like to find treatment that makes them less severe, for me I have a range of things that help somewhat, but yesterday I had a really bad one & was so sick I didn’t get meds down.

I’m looking at research around gut / brain link. I’ve read research around early childhood experiences endometriosis & migraines all very interesting.

It gets exhausting & I’m trying to control it which I’m starting to think is impossible all I can do is try things. X

[Hidden in reply to Janeylou]

I had a total hysterectomy at 40 and went straight onto HRT. No one suggested I shouldn’t, despite migraines. Twenty years later I’m still on HRT and will NEVER GIVE IT UP. If it does contribute to the migraines, I’ll take that over the awful awful awful menopause symptoms without it. Not sure this information helps you, but it’s another perspective in your armoury.

[Janeylou in reply to Hidden]

It’s a balancing act I find, I was thrown into menopause like you quite harshly at 38. I can’t have too much hrt but not enough it hell, I still under a endometriosis consultant & have zoladex to ease the residue endo that’s left. I just get a bit fed up with it I found mid 20s when my levels were probably higher migraines ok but since surgery wow they are like when I was a child!

I’m just trying to understand it too much maybe 🤔