Ongoing migraine issues

[BinkerTell]

I have been struggling with migraines for the last year and a half. I started getting vestibular symptoms followed by migraine pain in August 2022. My GP prescribed a preventative called pizotifen which reduced the severity and duration but had awful side effects (fatigue and weight gain).

Fast forward to April 2022, I was still having migraines but they had improved as Inhad started a strict tegimen of supplements at the beginning of 2022 - magnesium, feverfew, B2, B12 and COQ10.

I had also eliminated known food related triggers - cheese, chocolate and alcohol and reduced caffeine intake. Minimised other lifestyle triggers so ensured good sleep hygiene etc. I was struggling with severe anxiety.

I sought help for peri-menopausal symptoms as migraines are often hormone related and am now on HRT.

Things improved somewhat but I was still getting migraines so am now on topimarate as a preventative and only titrated up to the maximum dose 2 weeks ago.

In the last two months I have had six migraines, each of them lasting at least five days, some as much as a week. I run my own business. I am usually a very strong person who pushes through but I have reached the point where I can no longer cope. I have had to continue to advocate for treatment as my GP surgery was awful and in special measures and had to go private.

I am constantly making plans and having to cancel them, letting friends down. I am an unreliable business partner and leader of our team and I can't see any way out of it.

I am also worried that I have been misdiagnosed as this latest one shows no sign of going away and seems to be affecting my ability to think clearly. I have an MRI scan booked in later this month.

Does anyone have any positive stories to share about successful migraine treatment or suggestions as to what else I can do?

Sorry I just read Sumatriptan didn't provide relief for you (it's early! Haha) - that's a shame and very unfortunate! It's really a matter of trial and error. But to this day I'm so fed up of pumping different drugs into my body to find a relief that I just give up and deal with them as and when. I was prescribed tramadol when not long ago to help with the 9 day migraine and if they're really bad I'll take one/two of those if my DH is about xx

It certainly is decent stuff. I have resorted to buying the smaller packs over the counter but know you can get them online from trusted sites. They're a god send when they're the worst of the worst. Hope your gran has found a combo or something definite to prevent aswell as stop an attack xx

Am going back to my GP today to see if I can try another type of triptan. Either the migraine from last week has redoubled its efforts or I've got a new one. I spoke to my business partner too and have decided to take some time off and reduce some stress to see if that breaks the current cycle.

I really appreciate hearing about all of your experiences - last night I'd managed to convince myself that it was something more sinister because of them getting worse, more frequent and longer in duration.

I had the same problem with amytriptyline and having to get DC up for school. Did anyone’s dr suggest a lower dose or is that not really how it works as a drug?

I've tried all the medication available both prophylactic and abortive. I haven't tried botox.
It doesn't stop them but my migraine frequency is greatly reduced with low carb diet and a combination of weightlifting and yoga (and staying far away from running and swimming which lead to terrible migraines). I actually find that if I can force myself to go and lift weights during one of the migraines that goes on for weeks flaring and dying down it will sometimes break the cycle and kill it off.

High dose dispersible aspirin at the absolute start of a migraine can help minimise it a little. Neurologist also said a lot of migraines start cooking the day before so if you feel like you're hitting triggers take painkillers before bed. Her advice was hit the migraine as hard as possible as early as possible because preventing it is better than trying to stop it once it's already going.

If I'm being honest I wasn't on the highest dose to begin with and I lowered it once and it was still happening. So I just didn't want to risk it anymore. It's such a strong drug! You could try suggesting a lower dose to the GP, but then there's always the risk it won't do what it needs to do that the higher dose does.. just may not be strong enough. Its worth a try either way xx

It may be worth nothing that a couple of times I've had a migraine longer than a week, the DRs have given me antibiotics. My GP says that just because we suffer with chronic migraines doesn't mean we should just put up with them or the pain. And if it lingers and nothing is stopped it after a week then they're may be another cause. Do you have a raised temp or anything? I didn't necessarily feel unwell at all, no major temps, no sickness or pain, just pure migraine. Its so hard, but if you think there is something more sinister then please see or speak to someone. Better to be safe than sorry X

Are your migraines vertigo or ocular? I get vestibular migraines and am on Betahistine, it's made a massive difference. I had full balance testing and hearing tests done first by an ENT as symptoms are similar to Menieres. Just a thought, I hope you get some answers.

I was getting 3 to 4 hemiplegic migraines a week.
I take sumatriptan occasionally but the biggest thing that worked for me was getting a daith piercing.
I've had only 3 migraines in the last year.

I had this done as I've heard a lot of stories about it helping. Mine infact didn't help at all, and my piercer said it's not 100%. Glad it worked for you x

I was taking 10mg at night of amitriptyline for nerve pain for 6 weeks and realised at the end of it that I hadn’t had one headache or migraine! Propranalol is great for anxiety for me, but has never worked for migraines unfortunately. I’m a week into a migraine at the moment, I’ve never tried any triptains but I think that might be the way forward for me. Hope you find something effective @BinkerTell 💐

This sounds like the migraine symptoms I had. I too was on topiramate and felt it wasn't worth how it made me feel. I've been migraine free for around 18 months which coincides with me getting the right HRT preparation. I wasn't allowed Triptans as I suffered for years with hemoplegic migraine. Dihydracodeine was the only pain relief that worked.

I know you say you’ve looked at dietary triggers but have you considered tyramine content in your food. It’s in a lot of food, especially aged foods such as alcohol, dried or cured meats, sauerkraut etc. Also, nitrites/nitrates can be an issue, & MSG (which hides behind a variety of names).

Hi op just want to say that sounds just awful and I really sympathise. Migraines have ruined my life. I had a lot of success with amitriptyline but it needed to be 20mg. I can't remember the first pain free day felt so euphoric!!
I migraine free over a year now on beta blockers.

I have to be so careful. Not eating very regularly can trigger. Temp changes can trigger. Having a lie in can trigger. I got as far as an mri and that was clear though.

Migraine is the worst pain you can experience that doesn't indicate you are seriously I'll. people who have never had them really don't understand

migraine.com/wp-content/uploads/2015/02/elimination_diet_comprehensive.pdf

The above list seems reasonably comprehensive in terms of “safe” foods & which are better to avoid, it’s not the one I used when I first realised there was more to me triggers than I’d thought, but it’s similar.

One other suggestion is - have you tried antihistamines? I thought for years that my migraines were worse in winter due to the cold, or air pressure difference, or something, & a few years ago I tried taking antihistamines right through winter & it did help a little bit.

Your Dr refusing you triptans for hemiplegic attacks was wrong - I also suffer with them and neurology are more than happy for me to have them. Do you have other risk factors that stopped you being prescribed them?

@GetOffTheRoof I have hemiplegic migraines too, in addition to hormonal migraines, my neurologist says I'm not to take triptans. There's a history of stroke in my family, on both sides. Every person who had a stroke, had suffered migraines for many years.

Stroke is a separate risk factor for triptans. There is a correlation of stroke and migraine yes, but the research is ropey at best. Hemiplegic attacks alone are not the reason for triptans to be refused.
Botox reduced my hemiplegic attacks by more than half from one every week or so, and Ajovy has meant just two hemiplegic attacks in 18months. Absolutely life changing stuff.

Thanks again for all the helpful comments from fellow sufferers, it is reassuring.

I went back to the GP on Wednesday - she wants me to try aspirin and full sugar coke as an abortive (I had avoided aspirin as I am asthmatic but she said the risks are low) rather than try another triptan. Main thing will be to wait for the results of the MRI - but she was willing to refer me to a neurologist and may look at the HRT dosage too.

In the meantime, I'm taking some time off work to ease the pressure a bit.

Hi OP. I just read your update and had come on to post just that - in an attack I take three dispersible aspirin in full fat Coke and it really does help. If that doesn't help enough I take Frovatriptan- the only triptan which works for me. I also take Nortriptyline daily as a preventative after my combination of Amitriptyline and Propanolol stopped working.

I've tried just about every medication mentioned on this thread for my migraines (Topirimate being the worst) and this combination is the best so far. I feel like I've got my life back. This medication combination was recommended by the doctor I saw at the National Migraine Centre. They are absolutely amazing there - it is run by doctors who suffer or have suffered from migraines themselves. They do video and phone appointments too. I hope the Coke and aspirin helps you too. I always carry a mini can of Coke and some soluble aspirin in my bag now. Keep going back if it doesn't help- there will be a combination which works for you.

Topiramate is the Marmite of migraine meds! A high dose was transformative for me. In partial contrast to those who found relief through HRT, I found that coming off contraceptive pills helped.

When I do get a migraine, which is rare these days, Coke or sugary tea plus two aspirins is also my best bet. The sooner, the better.

My neurologist saud the same about Topiramate. I had to come off it because amongst other things, everything including water, had a metallic taste. Horrible!

I’m sorry it didn’t work for you, @IndieK1d I have a similar side effect: fizzy drinks all taste flat. So much for my previous love of champagne. Worth it, though.

Ive been having migraines since my early twenties. Mine are very hormone related. I used to get them around the time of my period and sometimes mid cycle (ovulation) as well, but thankfully not every month.

During pregnancy they declined, but came back after birth.

During the menopause after a couple of other brands of HRT I was put on one that consisted of taking a pill (oestrogen) for two weeks then swapping to another one (progesterone) for two weeks. On the first cycle after 3 days of taking the second type of pill I had the worst migraine of my life, I then had 4 full migraines over the following six days, which was very unusual for me.

I saw a consultant who said my migraines were caused when my hormone levels changed, so I was put on a low dose constant patch (evorel). My migraines went back to normal maybe one every couple of months or so.

I haven’t had a period in ten years, and I no longer take HRT, but I still get migraines every so often.

I have tried many things over the years with no success. Now I take soluble co-codamol at the first sign. I find cold gel packs very helpful during an attack.

Ive written out my history in detail in case there is something in it that rings a bell for you. Is it possible the HRT is making things worse?

Lamotrigine (anti-convulsant) has taken mine from chronic to just hormonal x 2 a month. I take frovatriptan (they have a longer half life than other triptans) at the very first sign of a migraine and they kill it within a couple of hours.
it’s horrid I’m so sorry and I hope you find relief soon