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?

It does make you wonder with the amount of people who find full sugar coke helpful is that maybe some who eat very healthy with very little sugar at all are getting symptoms similar to a diabetic hypo - virtually everyone I know who gets migraines eats really healthily

Interesting about the coke. A symptom fir me is a craving for sweet stuff. Particularly fruit juice. I always get this just before a migraine.

I wouldn't say I'm the healthiest eater tbh. During a migraine I do feel the need for chocolate sometimes. & then after an attack I always find I need something sugary, drink wise! Especially if it's a bad attack as I feel like I'm almost hungover after. It's so draining.

The hangover sensation is the postdrome phase of an attack.

Ignore the time frames in this image, for some people it can be days or even weeks as an attack brews, happens then fades..... For others it could be minutes from prodrome to attack. Aura can also last for days.

This is very interesting to read all of the suggestions. My dd 15 has suffered migraines for 3 years and we are no further forward in preventing them, my dd has double vision daily - has had yearly eye tests and seen by optometry she has tingling down one side of her body this is less frequent, but, she probably has 3/4 headaches per week with excruciating ones 1-2 per month.

we ended up in A&E recently as she had lost her memory suddenly, spanning back a couple of weeks. Advised all migraine related, see GP, they want to try meds first,she tried sumaptryiptan but didn't really help, now on pizotifen but still much the same, she is GCSE year (y10) so I am trying not to allow her to much time off but it's so difficult.

I will look at a couple of the suggestions on here to try, diet/cold cap .

Does anyone have any suggestions as to what help I can ask for? Is it worth paying for a migraine center review? Did anyone else experience these symptoms. I do worry there is something else going on to but I can't get anywhere.

This makes sense!! After all the years of mentioning the hangover feeling after an attack to different specialists and GPs .. never heard the word postdrome. Thank you x

@Battlecat98 if you can afford a consultation with a private neurologist who specialises in migraines that does sound an excellent idea. Whilst a Migraine Centre is obviously a good choice, there will be other good options also. I would think that (given good options) time is of the essence for your DD given the memory issue which is concerning

Aspirin and coke really!!

Rarely works. You literally have to know that it's coming before the migraine is there or it won't work.

Your GP is an arse.

You're left to suffer. I'd go back again and ask. She'd already prescribed you a triptan and the risks between one triptan and another is small.

Botox has really changed things for me. I still get migraines, about 12 days a month, but now they manifest as mild pain and disorientation & fuzziness. I feel gross, but not line I’ve been hit in the head with a steel pipe. I no longer throw up either. No more hiding in dark rooms. I get it quarterly through the neurologist.

I also take zolmatriptan at the first hint of a migraine. I use more than I’m supposed to, but so far haven’t had side effects.

@ I suffer with migraines to or cluster headaches behind the right eye and eyebrow it's so instense I can't lift my head or talk

The double vision - yes I can understand if she suffers that regularly with migraines. It can be a typical migraine aura for some.
The memory loss - I can forget where I put things during an attack, which can last several days. I can forget what conversations I've had and what people have said to me.. for example; I had a bad attack that went into last night, had a conversation with DH about shopping and collecting it, but at some point he told me that we weren't collecting a shop now and he will go do one of an evening for some reason or another.. I completely didn't realise this and forgot this, got ready to go and collect the shopping today, for him to ask me what I was doing. 🙃 other things can seem a bit hazy, like places I went and that, almost like a fuzzy dream.

It's difficult RE time off because it can be so debilitating, before children I really struggled with work.. and I dread getting back into work for this reason. Especially when my old boss wasn't so understanding.

I'd advise going back and getting her a referral to a neurologist. X

Thanks justwingingitox that's reassuring to hear you suffer from memory loss although I am sorry for you, my daughter was really distressed by it. I have had to wait 3 weeks for a telephone call from GP so that's next week. Perhaps I need to speak to school also as she does miss a lot of lessons. I just worry if she gets one when she needs to sit an exam.

I feel lucky as I suffer from migraines but not to the extent anyone on this thread or my daughter does. It is so debilitating and only understood by those who suffer. My migraines are very short lived but I do have the intense pain that is unbearable and nausea and vomiting. I also get the prodromal symptoms but oddly mine is euphoria which is so amazing I can't really explain it.

Just been reading the NICE guide someone linked to and it seems my dd should have been referred to a neurologist and not started on a triptan. I will ask about this next week. It is so difficult to access help.

@Battlecat98 you have my sympathies in accessing help. I was fobbed off with five minute phone calls with my GP that we're sometimes the day after scheduled and at really inconvenient times.

Now, I don't have one GP but whichever doctor is available. I'm willing to try the aspirin and coke and if it doesn't work we will try a different triptan. I don't want to change too many things at one otherwise I won't know what is working.

I am finally almost headache free and able to move around almost normally.

My prodrome usually consists of me feeling really low and irritable and the photophobia starts and am also really intolerant of loud noise. And also get the hangover effect. A migraine attack from start to finish can last two weeks.

It's definitely a hereditary thing. Older members of my family also suffer. Though none seem to be as bad as me. I'm just hoping my children don't get the bad luck and suffer like I do and experience them regularly.

It can be very distressing. I'm 30 and I can be so down about it. The other week during a 9 day one, Iust sat and sobbed because of the pain, I cried in the shower, at that moment in time it was so severe I just wanted it gone and had exhausted every route and trick in my usual book. So I dread to think how your daughter manages to cope at school. Mine got severe at about 18. Had the occasional one from 15. The only time I've been migraine free is when I've been pregnant with all 3 DSs. It is definitely worth a chat with the school, make sure they understand just how bad she's struggling and explain you're having it properly investigated. It can't be helped on your DDs part so they need to find a way of helping her if or when it comes to an exam and she unfortunately has an attack. They should be able to sort something.

Please seek a referral to a neurologist - where they can investigate, diagnose and treat accordingly. She's so young still and she shouldn't have to suffer. She should be under the right care. Xx

I have been there.

Tried everything! I mean, everything.

Botox is the only thing that helps me, and the strongest dose of zolmitriptan when I actually get an attack.