Migraine - advice for referral?

Parva

soolin wrote: »

Having stated that I rarely get migraines any more I got one yesterday, my sons wedding day. Had to leave the wedding and go to lie down in a dark hotel room and missed everything after the meal.

My OH cant understand why I couldn't just 'put up with it' and stay for the last 6 hours or so .

Not sure whether you're looking for sympathy here (and if so, you have mine) but isn't it a little inappropriate for a mod?

soolin

Parva wrote: »

Not sure whether you're looking for sympathy here (and if so, you have mine) but isn't it a little inappropriate for a mod?

there are no mods on MSE .

I did not think it was inappropriate especially as I had stated confidently that I had grown out of mine, but I have removed it anyway and apologise for any offence to the OP.

ab.da54

Although 'not yet a GP', the doctors you have seen will still be highly trained and qualified, with all sorts of medical knowledge.

It is frustrating when there are no answers and you are in pain so hopefully you will find relief soon enough. Perhaps there is also the consideration that you stop the trial drug, along with the advice of your consultant [never just stop taking medication without medical advice] as the side effects of that could also be the cause of different issues and that is worth bearing in mind.

saidan

i am a chronic headache/migrane sufferer. getting help is difficult - you will need a GP referral to a neurologist who specialises in migrane.

are you sure you are having migrane? you mention working - the neurologist i see would not consider it severe migrane if you are able to work - the expectation would be that you are in bed in a dark room vomitting etc........
.....is it cluster headache, daily headache or migrane that you have been diagnosed with? or do you not have a diagnosis and need help with that too?

topamax is one of the best preventative medications available - one tablet everyday, starting on a low dose and building up every few weeks till you get relief. very expensive and not always offered - so do try them if you can - obviously depends on the interaction with your other meds.

if you are on pain relief everyday - paracetamol, codeine, brufen etc the neurologist will ask you to stop all painkillers for a while - it could be that you are triggering daily headache via painkillers so a complete stop may help. could you try this while you wait for referral?

lots of different drugs to try - but you will need the help of a pharmacist or neurologist who can figure out what is safe with your meds.

botox is the last stop - but difficult to get and lots of criteria to get through - 15 days of migrane per month for 6 months as a minimum to be considered, a headache diary has to be strictly kept etc....

hope that helps. migranes are horrid.

GlasweJen

I can't stop the trial drug, one of its side effects (lowered immune system) is keeping me alive as I have graft-host disease.

FBaby

The issue seems to be about drug interactions. No GP, or even possibly a consultant would know for certain about all drug interactions, hence the referral to the special pharmacist. It sounds like it is them you need to chase. You medical conditions and drug treatments seem very complex and they need to be 100% sure that prescribing something new won't trigger any dangerous side effects.

The pharmacist might be waiting for further info from another specialist but if I were you, I would ask who they are and chase them directly.

GlasweJen

The main problem is that no one will tell me who this pharmacist is or where he is based which is why I've asked to be referred on.

My GP and neurologist both agree these are migraines - I appreciate some people end up in bed with migraine but it takes a lot to keep me off work. I was working full time until 3 days before my transplant and believe me I was pretty ill then.

mumps

So sorry to hear you are suffering. I suffered from chronic migraines until the menopause which brought me relief so I guess it was hormone related. I don't know if the pill would help with that. I have also heard that botox works wonders for some people, I assume it is because it relaxes the muscles? Might be worth investigating. Good luck, and thanks for the advice on dry eyes, I have bought the drops you suggested and they are a real improvement on the ones I have tried before.

Parva

soolin wrote: »

there are no mods on MSE .

I did not think it was inappropriate especially as I had stated confidently that I had grown out of mine, but I have removed it anyway and apologise for any offence to the OP.

I guess being an 'administrator' does have the advantages of being able to remove your own posts, nice. Not sure what else I should call you.

soolin

Parva wrote: »

I guess being an 'administrator' does have the advantages of being able to remove your own posts, nice. Not sure what else I should call you.

I am a volunteer Board Guide .