Migraine prevention battles

[Pinkysavestheday]

Hi, apologies in advance for long post but at a loss how to proceed with migraine prevention and hugely appreciate anyone else’s advice/ experience. Suffered for over 30 years and finally went on first preventative last September following a non-stop 7 week daily migraine. Amitriptyline reduced that to an average of 10-12 migraine days/ month which is huge for me. Unfortunately had to keep increasing dose to maintain effect and once I’d been on 75mg for several months, stopped being as effective again and heart rate started being impacted, so tapered off 5 weeks ago. Tapering was fine until the the last week (so 6 weeks ago) and sleep stopped and started feeling pretty sick. Then started on 80mg standard release propranolol 17 days ago. Have barely slept since and been back to daily migraine for two weeks. Have follow up with doc in another two weeks. Also had 5 auras in last two weeks, which I don’t normally get. Do I keep going as I know these things take more weeks than I’ve tested the propranolol for and it could also be that I need a better dose?. Could it also still be amitriptyline withdrawal and I’d be daft to have got this far with a new med and to give up too soon. See a long stretch of three steps forward, two steps back ahead. Not sure I can maintain my job indefinitely! Help please!

I was getting aura without pain. Stopped with steroids (for something else inflammation related - mine may have been triggered by the same event though). Daily magnesium also seems to keep them at bay for me. Fairly sure mine are inflammation based as when I got the start of one I take an extra low dose steroid and they go,

That sounds awful, sorry you are going through this. My migraines started when I was around 10 and became much worse and different when I reached perimenopause late 40s. I now need HRT and propranolol 160mg daily to manage them, I also take magnesium glycinate. I recently tried lowering the propranolol dose but that triggered more attacks. So you might need more than just the propranolol to get on top of your symptoms.

Full sympathy OP I've had an awful time with migraines in the last year! I can't take propranolol because of low blood pressure so can't comment on that but if they decide it isn't suitable it may be worth asking about Pizotifen - apparently it's an 'old' prevention med and not used much anymore but it's been a game changer for me in the last couple of months, I've had 10 symptom days (not always pain, aura and dizziness are a bigger part of my migraines) since the start of May compared to 14-18 a month beforehand.

Thank you for your relies. It could well be that I need to up my propranolol dose, which is why I’m reluctant to give up on it yet. Very hard to anticipate increasing something that’s ramped up migraines to daily again. I know this is a long game- it’d just be easier if I knew sticking with it would help! Do you take standard release propranolol? I’m confused by conflicting info that says it causes peaks and dips in no and also reflects sleep, but there no gradual release available at the moment, which it seems would be better? I also take dolovent each day, which is a big magnesium dose and recommended by the migraine trust, should that be of help to anyone.

Thank you, captain, I’ve heard of that one. It’s good to go back to the doctor in two weeks with additional suggestions. I think she wants to try me on topiramate if propranolol ends up being no good for me- she suggested topiramate first, but I pushed for propranolol, which I’m currently regretting and wish I’d listened to her. I’m nervous about topiramate as it gets bad press for side effects, but as she said, you’d never eat half the foods you eat if they came with a list of side effects and I could be staying away from the very preventative that’s the one for me??

I take propanolol. I take 80mg in the morning and 40mg before bed. It has reduced my migraine days to approx 5 per month. I get 6 sumatran per month to take ar the onset of a migraine and rarely need the 6 in a month. It did take about a month before I saw a difference.

Have you tried eliminating or reducing the 5 Cs from your diet?
Cheese
Caffeine
Chinese food
Citrus
Chianti ( alcohol).
Worked very well for my dd.

I used to take propranolol gradual release 80mg 2x daily but now take the standard ones due to the supply issues. The side effects are worse (more breathless if walking fast for eg) but the migraine control seems no different. I’ve been on some dose of propranolol for over 10 years now so I’ve had time to get used to the dose. But tbh it’s the HRT that has made the biggest difference in recent years. Dolovent made my head feel strange so I switched to just magnesium glycate.

Thank anon, good to hear from someone who’s switched from extended release to standard due to shortages and to be able to say effect on migraine seems the same- I think I’ve been wasting too much energy on the fact that I’m stuck with standard release! First thing doctor tried was HET, but that resulted in aura (like propranolol has) which I never get so was taken off HRT and not to try again til through perimenopause (must be soon as now 50). Constantly try food triggers, avoiding all on list but not sure it really changes anything. Hard to tell when they are so frequent. Golden and anon, how do you manage sleep on propranolol? Mine has been really affected, but only 16 days in so hoping to adjust? Seems a conflict of it working since lack of sleep is suck a migraine trigger, which is another reason I wonder if propranolol might just not be the right choice for me? Do I stick with it longer??

My DH went through this round a number of years ago. Propranolol did nothing for him. In the end it was a low dose of amitryptaline alongside topiromate that finally won. He was on that for a couple of years and then weaned off both. He still gets them occasionally but barely one a month.

My sleep isn’t affected by propranolol other than vivid dreams / nightmares sometimes, but that’s after many years. GP is best placed to help with decisions about how long to stick with the beta blockers but I think if you try a few different preventative meds with no success you then meet the criteria for the new injections that have been introduced for migraines. Sounds like you already follow all the standard advice about triggers etc (dehydration and missing meals are my worst ones).

My sister found that a monthly whole body massage to release all the tension she definitely carried in her upper body did absolute wonders for her migraines. She was on Amitriptyline and gradually weaned off them. The massage wasn't intentional for migraines just lots of her friends were having big birthdays and they all chose spa days. She made it a priority in her life.

My Mum found acupuncture worked for her as well as cutting out caffeine plus introducing breakfast as she always skipped it. I have migraines since I was a child but mine were never as frequent as my Mum or my sister's were.

Thank you for all the responses. It can feel very lonely navigating the migraine road at times and advice from those who ‘get it’ goes a long way!

I'm with you, OP! I am on the increasing dosage of amitriptyline, plus sumatriptan, anti-nausea tablets and an experimental painkiller (which, I found out recently, you can't get out of the blister packet without nail scissors). My only concern is that while I've been advised to take lifelong medication, nobody has queried what is causing the migraines. I suspect that I know what it is, so I'm trying out new measures to avoid the glare of the new lights at work. Mine are usually 4-5 days, which impacts on my income, and I have been flagged up as a 'problem' at work for having to take time off with them... so I have extra meetings about that to look forward to.

Avoiding cheese and oranges is important for me, and a food intolerance test indicated that I also shouldn't have milk, wheat or chicken eggs... which rules out a majority of foods.

Monthly deep tissue massages do help, as I carry a lot of tension, particularly in my back and shoulders, and people have mentioned acupuncture, chiropracters, daith piercings and Botox to me.

Have you tried Botox? I‘d be tempted also because you can keep trying medication at the same time.
I don’t know whether triggers are very useful to track as sometimes the beginning migraine gives you the craving for the food you believe to be a trigger

@Pinkysavestheday I’m a GP who has migraine with aura myself. I really sympathise, especially as I am becoming more and more sure that perimenopause is destabilising my usual baseline for migraine. I think I’m getting non headache aura which basically just makes me cognitively slowed - not brilliant for a GP! Fortunately Anadin extra does seem to help temporarily (triptans work but leave me feeling like I had had the flu for a week!). But I think I’m going to have to look at preventer medication now.

I think if I were your GP having got this far with the beta blockers, I’d probably encourage you to stick with it for at least 8 weeks and no more than 12, as either it will start to help, or you can safely switch to an alternative without worrying you might just not have given it long enough (as it’s going to take a similar amount of time for the next thing to build up anyway).

It’s very difficult if you’re having migraine that often to work out your triggers. So I think it will help to find the right preventative for you to at least calm them down enough to be able to spot patterns.

For me personally my biggest triggers are stress, hormonal changes, low barometric pressure, and either not enough sleep or too much sleep. Oh yes and red wine but I gave up trying to drink it about 20 years ago lol. Annoyingly not many of these factors are within my control!

I would go for the topiramate personally after that if it isn’t working out. I’d probably give up about week 9-10 of beta blockers if it were me. I have seen pizotifen be very effective for some, but it does tend to cause weight gain for most so unless you are one of those annoying people that stays effortlessly slim I would personally avoid it unless as a last resort.

And yes Botox for migraine specifically has good evidence of nothing else is working but you generally have to jump through a lot of funding hoops and have a long wait to access it on the NHS. Sadly there is no evidence for daith piercings (I quite fancied one 😂).

Lots of great advice op but please also get your blood pressure checked!

Wow, can’t tell you how much these responses help- not just the advice but the emotional support. Some very similar experiences here to what I am going through. I finally tried the diath piercing last year. No joy from migraine point of view, but I rather like it and would never have been brave or cool enough to get one if I wasn’t trying it for the migraine! I’ve had various attempts at Botox over the last few years, but all paid for by myself in desperation. The first time a gp friend used me as a guinea pig but it didn’t work. I then tried a local salon that was advertising as migraine Botox but I now know through better awareness that it was the cosmetic version. It did, however, work really well for 2-3 years and then just stopped as migraines started ramping up last summer. I’ve since tried 3 rounds of migraine specific Botox with a registered doctor and didn’t work at all. I went back to the clinic where I’ve previously had success, for one more try last Monday. I need to keep working just to cover the costs!
Britneyfan, I really appreciate your advice about topiramate alongside giving propranolol a bit longer. Im leaning more and more towards topiramate, just a bit nervous about its side effects reputation (I’m a teacher so need to remember what I’m meant to be saying to my class!). It’s incredibly reassuring to have advice on here from a gp, but also a gp who, sadly, fully understands the migraine battle. Thank you to you all.

Not to try and scare you off topiramate but I tried it for a short period earlier in the year (short because of the side effects) and it made me a literal zombie, even my thoughts felt slow and 'thick' in my head, weird description but it's the only way I can describe it! Plus horrific 'drop' sensations like I was about to pass out on the spot. My job is much easier than teaching and I couldn't do it...if you can wait until the summer holidays to try, I probably would!

Big tick for topiramate here. Occasional aura only migraine suddenly increased from 4-5 a year to 25 a year. 25mg at night has reduced them back to less than half a dozen a year and can't say I get any side effects.

Thank you for the advice and words of warning, all of which

Somehow messed up last post!
plan moving forward is to stick with propranolol (40mg x2 each day) for next two weeks until doctors appointment. I’ll have then given it a five week test to see if daily migraines reduce and sleep improves- still think both are likely worse due to amitriptyline withdrawal which is now 5 weeks since last tablet and it’s been really, really tough!
obviously with doctor’s advice, I can then see if it’s worth sticking with propranolol or if it’s just not right for me, and move to a different preventative. I’m still leaning towards topiramate, but I am nervous.
does anyone think body weight makes a difference to dosing and how a person copes. I’m 8 stone and wonder if starting on 80mg propranolol was a lot for my system to deal with straight off?

I’ve had hormonal migraines since I was 15, they became much worse with perimenopause and I’ve spent several years trying preventative meds, some have helped for a while and then gradually the migraines would come back. I’m in Australia so the criteria may be different but I was finally referred to a neurologist around 18 months ago, criteria being having at least 15 headache days a month or more than 8 migraine days (I was having 2 or 3 migraines a week and the other days had a constant headache that no painkillers would touch) and you must have tried at least 3 preventative medications. I’ve been on monthly injections (Ajovy) since then and they have been life changing. I’m still on propranolol and also take magnesium daily (both of those I've taken for around 8 years now, neurologist believes they do have some effect), I have maybe 2 headache days a month now.

This is probably no use to you at all but my migraines vanished when I was found to have high blood pressure and put on Ramapril.

Before that I'd found aspirin more effective than other treatment meds when an attack had started, and I was incredibly sensitive to caffeine - I didn't have a lot, only a couple of cups of tea a day, but if I missed them I'd get a migraine.

Like @TheeNotoriousPIG I'm a bit worried there is something underlying especially as I also have pulsatile tinnitus but quality of life is so much better now.