Migraine care, helpless

[Skymningen]

This is going to be a long one, I am so sorry. I also posted this on another HealthUnlocked Forum, but I actually had meant to post it here... so I hope that's not a problem. I need guidance about this, I feel rather helpless right now.

I have been having migraines since I can remember, definitely since I got a CT scan (nothing to see) when I was about 4 1/2 years old. In the beginning, my parents tried to get a better diagnosis and better care, which led to me trying out stuff like manual therapy or acupuncture, and being given "childrens aspirin" or the likes. Painkillers for children barely helped so every migraine was a torture of basically getting nauseous enough to throw up and then fall asleep when that made me feel better for a while.

When I got an adult, my migraines changed from starting during the day and including nausea, but being gone the next day to starting at night, more prodrome (yawning, fatigue, speech problems, but no visual aura) and lasting up to 3 days, or recurring the next day.

I finally got myself a prescription of Rizatriptan from a GP when I came in with stomach aches from taking too much thomapyrine (aspirin, paracetamol and caffein mix).

Two years ago I finally went to a neurologist, got frovatriptan and then sumatriptan as well as started prevention with metoprolol. This was all in Germany where I am originally from.

Now I have moved to the UK. I had a letter from my neurologist which got me a repeat prescription of sumatriptan, rizatriptan and propranolol (as an alternative for metoprolol) at my new GP.

The migraines aren't good right now, though. Now I do not have a neurologist to go to anymore, an appointment at the GP will be in more than 3 weeks. I have had migraines for all of last week. I thought it was gone today, but the yawning is back already. My family and partner are very worried, want me to get an MRI and accuse me of "not seeking enough care".

My average is 2 attacks a month, one stays for 2-3 days. Sometimes it is more (like last week). The attacks are not super bad (little nausea that I can cope with, triptanes do work for a while and enable me to not miss work, I can roughly function for the day if necessary). The prodrome is getting more and more annoying. Still, I feel like a migraine impostor compared to what I hear from other patients. No reason to be referred to specialist care or additional diagnostics I would say. But there is my family nagging me and the "bouts" of more migraine do slowly eat away my strength.

What care can I get though? Can I self refer to a neurologist (and how do I find one who preferably specializes in migraines)? Can I ask to get an MRI (to placate the family)? Do I just have to go to the GP (and how do I explain that everything was okay three months ago, but now I need better care)? Do I have "enough" migraine to go to a specialist clinic? I am honestly lost. Any help is greatly appreciated and thank you so much for coping with having to read this rather long "migraine rant".

[Cat00]

Hello,

I've have chronic migraines they started when i was about 4 or 5 and ive never been given an MRI by the NHS! But of course that doesn't mean they shouldn't of given me one and a lot of people on the forum have had them, but it seems unlikely with your history of migraines that they would give you one.

Although I think all migraineurs should be able to see a neurologist unless their GP specializes in migraine in which case it may not be necessary. There are plenty of neurologists that specialize in migraines but it does depend where you live in the UK.

People's migraines shift in severity all the time so it is totally reasonable to want to see a neurologist one year when you didn't want them the year before. Either way it sounds like you should go to the GP and start the ball rolling because it can take months to get a referral. If you want to see a neurologist and a GP says no you can insist, you can write to the practice manager of your surgery and plead your case. I have been told if you insist the GP's basically have to refer you.

If you are anxious all the time or things are getting worse or even that you are now living in the UK so havent got a regular care plan it is totally reasonable that should set up some proper care for yourself here.

[Clydelle]

Hi Skymningen,

I'm so sorry to hear about your suffering. Your post seemed very familiar- it reminded me of myself; I always learn something from other people's posts and then don't feel that it's just me having a hard time. The other response that you've had to your post is great advice. I'd only add that if you don't find any help through the GP, then I'd be tempted to go to the National Migraine Centre in London. Although private, their rates are reasonable and they will take a donation if you're struggling to pay. In my opinion, you definitely qualify for an appointment- you are suffering and your life is negatively impacted by migraine disease. What you described is enough to seek out specialist advice! I've had a lot of success from their intervention and my story is not unlike yours. I wish you the very best of luck. Sending positive thoughts to you in your search, Clydelle

[Hidden]

I think you will have to ask your doctor to refer you to a neurologist but make sure that the neurologist has some sympathy and understanding for migraine sufferers. The first neurologist I was sent to said to me that I had migraine (which I knew!) and that my doctor and I could probably sort out a suitable treatment, which we hadn't been able to up until then which is why I had asked to see a neurologist.

Eventually, I managed to get an appointment with Prof. Peter Goadsby in London (I was referred to him by my doctor at my request) and most recently with the Pain Clinic at Poole Hospital, in Dorset, where I was given excellent support but unfortunately no successful preventative treatment.

[bamboo89]

I think the suggestion that you go to the National Migraine Centre in London is a very good one - yes, it means paying something, but I suspect that would be the most useful and rapid thing you could do.

In regard to MRI or CT scans, CT is just as useful for looking at the brain, its the preferred form of scanning for suspected stroke, though I suppose that might just be because CT is more readily available. But the thing I want to pick up on is, you seem to be feeling this pressure because of pressure from your family; they say you are 'not doing enough' to try to get your migraines sorted, as if there's some magic wand that can be waved to rid you of the problem that you've not bothered to find so far. Yet we all know that a migraneur is a migraneur, and frankly, feeling pressured because you're somehow failing to address this problem is not helpful in the least. I fully understand your family may be worried, but what really matters is whether you are worried; families can be helpful in some disease situations, but so often, though possibly well meaning, that pressure is not helpful and may actually aggravate symptoms.

I saw a couple of neurologists in regard to aura (or optical if you like) migraine, but was not prepared to take the only treatment offered, which were epilepsy drugs because, at the time, the episodes were infrequent, so I felt it was a bit 'sledgehammer and nut', so to speak. As I got older, they increased in frequency and became a real problem by two years ago, when I was having at least one every day, more usually two or three. But I still did not seek more advice from the doctor or ask to see a neurologist again, though I was reluctantly considering going back and asking for the drugs. However, luckily for me, for a completely unrelated and different health problem, I changed my diet 14 months ago to whole food plant based, with a slightly flexitarian element, meaning I occasionally (maybe once a month or every two months) ate fish or meat. But never eggs nor dairy in particular, I gave the latter up completely (and I used to eat a lot of cheese). And to my complete shock and delight, an unexpected side effect of that change is that I have not had a single migraine since. And no drugs; I'm assuming its the exclusion of dairy that's done the trick. But none of the medics I saw in regard to the migraine ever suggested changing my diet at all, they just offered medication, so I'm not sure how useful seeing a standard neurologist would actually be. Which is why it might be more useful to consult with the National Migraine Centre - since your family is so concerned, perhaps they would like to help with the cost of going along there?

Miriam

[Kathybishop]

So sorry. Are u female? Are your migraines related to your periods? Menopause? If you have money you can get help straight away . I went to see a neurologist 5 years ago which cost £250 for 30 minutes! Sorry it’s sad money helps! Try going gluten free and only take drugs if you really can’t stand it any longer. Try Epsom salt baths ice baths ice caps eat amazing lay healthy. Sleep regularly and well. No stress ! No alcohol. I know it’s tough but I’m just speaking from experience. I’m better. I take far fewer drugs now. Ibuprofen paracetamol. And resort to sumatriptans and naproxen only when I’m desperate. ! Once only in the last three months. Good luck!

[tom1984]

Again, your situation sounds a bit similar to mine.

Triptans do nothing for me at all though, in fact I reacted so badly to one of them I thought I was going to die.

Recently been on daily propranalol which is the first daily migraine treatment I have been willing to try (as like you, they are relatively infrequent) but had to stop as the tablets were severely affecting my sleep (and sanity!).

Prodome/Aura is definitely the main issue for me - it comes and goes frequently without turning into a full blown migraine.

Something which I suggest to people who have tried different meds etc as it really, really improved the severity of the prodome/aura type symptoms is Coenzyme Q10, vitamin B2 and magnesium tablets. Details here: migrainetrust.org/living-wi... - no nasty side effects and made me feel generally better outside the migraines too, I'd say it's worth a shot.

Regrading getting a referral - I can't say for the rest of the country, but in London I haven't had a problem...but I have been lucky with good GPs at my local practice. I think if you explain to them how you have explained it here, they shouldn't have an issue referring you, and if they do - just insist on it. You may have a gp who is knowledgeable about migraines, but it's always best to look up any medications they advise to try as a lot of the time it's just standard 'try these, if they don't work try these, if they don't work try these' type meds that have been around for many years and a specialist will be better placed to advise on new an possibly better treatments - so again, probably best to insist on a referral.

If in London, there are specialist headache clinics - NHS neurologists taking referrals for migraine etc specifically, which you should as for instead of just asking for a neuro referral - eg ( guysandstthomas.nhs.uk/our-... ).

Good luck with everything and persist in seeking treatment. Let us know how it goes, or if you need any more advice.

[Bourdonchappy]

Hello, you need to seek help, and whilst an MRI scan might help, it will not detect migraine causes. Isuffer from both basiliar and hemiplegic migraines and have een prescribed topiramate by my neurologist. They are having a positive eggevt so far, but take time to be fully effective. I also take magnesium and take time to meditate and find inner peace every day. Calm the mind. There is no cure, just prevention and minimising the severity. My advice is seek a referral to a neurologist, or get to a migraine clinic asap and get proper help. Triptan based medication does ot work for majority if migrain sufferers, nor does propanalol which is a anti inflammatory drug. I hope this helps.