Calling all Migrainers

[misshappycat]

Eurgh, the misery of migraines!

All of my life, I have suffered from horrid migraines. I know my triggers: skipped meals, hot weather, pms, alcohol and stress, which is these days, mostly unavoidable.

I take Frovitriptan which although takes a long time to kick in, stops me from having migraines over days. However, more than half the time, it doesn’t work. Having 4-5 migraines a month, sometimes more. I’ve seen some articles on Gepants which look exciting, but my Gp says I need to try three preventative medicines first.

Not keen on Propranolol as I have low blood pressure and worried about being Sloth-like and don’t fancy Amitriptyline either due to reports of feeling drowsy into the next day (plus I have no trouble sleeping at night) and weight gain.

Not keen to have to try preventative medicines for months which I know have terrible side effects - any way I could skip to alternatives? I have heard a Migraine Centre Consultation might help and willing to fork out for this.

Also, keen to know if anyone has found acupuncture to work as it’s quite pricey in my area.

Thanks!

My daughter has chronic migraine. Acupuncture did not work for her. If side effects are awful, I would not push through but try the next medication. It is incredibly frustrating to have to waste so much time on often ineffective treatments to finally get an effective one.

Do you know The underscore Migraine underscore Life on Insta? I would recommend following her.

Hi OP, I had migraines that started post menopause, they were stable then went chronic. 3 or 4 a week.
Long story short I was told the same as you. The NHS do fund the new gepants but they are very expensive so they want everyone to do the three older and cheaper meds first. My nurse specialist said I could literally try them for a week before saying they werent for me. Obviously had they worked I would have carried on!
However I was in a pretty bad way with the migraines so I opted to see a neurological consultant privately and she prescribed atogepant. This worked very well. I went from 3 or 4 a week, pretty much constantly, to 1 or 2 a month. The best thing was as my lovely pharmacist told me they work immediately no 3 week delay.
I do still have migraines, pretty much though without pain just the fatigue and brain fog. And I have so few now.
Paying for the atogepant is expensive they cost £800 for 3 months. But I am able to pay, thank god. My GP actually asked me who prescribed them, she laughed and said I know we didn't not at this price.
I would recommend doing the 3 other meds first but dont linger to see if they work, if you can pay just do that. Atogepant changed my life.
Good luck!

You could also try some hacks at home which are home remedies basically. Give it a try but make sure you are performing it when the pain begins.

Atogepant has also been a game changer for me but like you said, had to try 3 medications beforehand.
I used to have them weekly and some would last for 3 days and then I'd have the postdrome tiredness. So miserable so I sympathise with you.

I was on the verge of having a daith or tragus piercing but my neurologist said that they don't work so wondering if the same principal applies to acupuncture if needles are used at the same pressure points?
Others have mentioned botox. If the atogepant hadn't worked, my next move would've been acupuncture. Sorry, know thats no help but I do understand that you get so desperate you're willing to try anything. Also some say that any of the above have worked at some point so I guess its horses for courses really.
Hope you find something that works for you.

I had a consultation with The Migraine Centre, they didn’t go straight to gepants with me. I’m on propranolol and amitriptyline. I find the modified release propranolol works better but this hasn’t been available in the UK for months 🙄.

I have no issue with either preventative. Migraine Centre prescribed naproxen/omeprazole/metoclopramide as a first step treatment then Eletriptan.

My GP said next step will be a neurologist referral then hopefully gepants.

I found the National Migraine Centre useful years ago (they told me to take triptan plus naproxen plus metaclopramide which worked for me for a while but sadly doesn't any more) but they might not go straight to gepants and if they do can you afford them privately? I think if they work they will write to GP to prescribe eventually but maybe not for a while.

Acupuncture didn't work and nor has any preventer.

The cheapest way may be just to get cracking with trying 2 more things of which propranolol and amitriptyine are probably the most benign; I would have said Candesartan too but you have low bp. I didn't find propranolol bad and amitriptyline was tolerable - the earlier in the evening you take it the less drowsy you are next day. None of them worked but it is box ticking.

I am currently 11 months into at least a years wait for headache clinic though so if you think you will need the NHS at some point I'd start that ball rolling now and you can always go to NMC in the meantime.

Acupuncture is pricey, but a good, effective acupuncturist will help you.
I am an acupuncturist, and I have helped many people with migraines.

Can you always reduce them to zero? NO.

Why not? Because to reduce them to zero, a person needs to understand what is causing them and work on themselves to prevent it from happening.

Can you ease them? YES.

Migraines are not trivial; usually, a few issues contribute to it. Venous congestion in the brain along the SCM muscle may contribute, similar to thoracic outlet syndrome, along with posture (head forward), stress, jaw clenching, raised shoulders (upper traps), etc. And there is digestion: diaphragm dysfunction or the Oddi sphincter (in the gut), basically digestion. It may be hormonal too. There are maybe fifteen or more possible causes, and 95% of them go back to the neck and digestion.

So, if you find a good acupuncturist who ideally combines acupuncture with myofascial release, tuina, gua sha, and elements of massage, you will solve the problem.

Why is acupuncture expensive? Well, the diploma and the courses are expensive. I bought many books, probably 100 or more, and did lots of courses and training, and a 3-day training can easily be 2000-5000. Books are often 100-200 pounds. It takes a lot of self-study, experimenting, and learning. It took me 10 years to become good. The price reflects the journey,

Good luck!

Migraleve pink. I know people who had botox for it on the NHS and said it helped, but obviously you need a proper assessment for that.

Migraine for 45 years including during pregnancy and post menopause.
painkillers alone (including migraleve pink or anything else that promises to help) do not help me at all just add to the sick feeling. I have bad pain but it’s not the only symptom
I’ve had two preventers - pizotifen that made me starving and put 2 stone on. Amitryptiline no effects either good or bad. Have low bp so won’t take propanolol.

trial and error what has helped me: overall increase in water/fluids all the time not just when I have a migraine. Avoid alcohol totally when stressed and strict limits when feeling ok. Increased sumatriptan dose from 50 to 100. After many years I realised that most migraines returned as the 50 wasn’t enough. Led to a vicious cycle of taking triptans and painkillers over several days.
Alongside the triptans I sometimes have metoclopramide which helps with the digestion of tablets plus food/fluids.
Painkillers in addition - usually nurofen plus as the codeine does help me. Recently trying long acting naproxen as an alternative.
Post recovery routine really important to reduce the risk of another attack - especially food (protein and salt) and fluids including moderate amount of caffeine

I've been working my way through a long list of NHS medications over the past year. I've only just been permitted to book a blood test on the NHS, after I said that I'd booked a private one, to see if it's a deficiency or something causing them. I'd rather find the cause, rather than just keep plugging away with medications, some of which have had horrible side effects, or have been completely ineffective. I did a food and drinks intolerance test, and my manager is still obsessed with me secretly consuming caffeine. At the moment, I'm at risk of losing my job and house because of migraines that I can't help, and it's not like I'm trying everything!

Rimegepant was the best, but it's now hospital-issue only 🙄so I have another two new things to try. I had my first private Botox appointment recently, with my second later this month. It's going to be an expensive chunk of money each month.

I hope that you all find something that works for you.

All of that makes sense. I have IBS and the neurolgist said that gut issues and migraine often go hand in hand plus I grind my teeth at night.
Yes, for finding the triggers. Mine are stress with tiredness. I remember reading up on it where it said that if you have one trigger in a day you might be fine but if, for example, you have 2 possible triggers in one day then that can cause a migraine. That tends to happen with me.
That said, for some people, its difficult to find their triggers, for others very simple. My friend always jokes that she only has to look at an orange and she gets a migraine!

It is hard to tell if you only see your own migraine. I have seen plenty, and the patterns are clearer. In Chinese medicine, we read (look at / analyse) the tongue, pulse, face, body posture - and I also analyse ears. Ears tell me about structural problems. Nothing is black and white, but a variety of approaches (aka data analysis and pattern recognition) allow you to form a hypothesis, act accordingly, and see whether things improve (after acupuncture). They should improve after one session, at least a bit. If not, you revise the hypothesis. It's a bit like detective work.

Neck and belly are the two major problems. What contributes is less clear. I had two cases (over 12+ years) where migraines were triggered by an additive to food. One was citric acid added to soda/drinks. In the other, it was MSG. How do you find it? It's easy once. After a few sessions, migraines need to come down to nearly zero - this is my approach - so if they still show up, I know, I know it's lifestyle. So it means it is something that you eat, you do or you experience. But when I see (palpate) certain tension in the belly, I know it's food (digestion). So then you list every single ingredient that you eat and mark when the migraines start. Within a few days, you know. You remove it and see what happens. If it improves, voila.

I've never seen a single reason for a migraine. It doesn't mean they dont exist - only that in my clinic I have not seen them. So, stress is no 1, bracing all the time etc. And acupuncture is really effective to ease that.