Migraines ruining my life

[Stropzilla]

I'm really only posting to sound off, but if anyone has any advice, I'd love to hear it. It's going to be a long one.

I've always had migraines. They've been steadily getting worse, and nothing I do stops them. I've tried cutting out the usual suspects - chocolate, coffee, alcohol but to no affect. Some things will give me migraines like not sleeping, or seem to have some relationship to air pressure. I am a wreck right now as I am currently on day 13 of a seemingly never ending attack. Anyone with migraine will tell you it's not just the pain, but the paralysis, blindness, inability to speak and general confusion. I'm "between bouts" right now, and am doing something I hate myself for. I'm looking at employment and support allowance. I have lost 3 jobs over migraines and have tried self employment as a means to working, but the fact I seem to lose 2 weeks a month or so to migraines, and am generally confused and forgetful the rest of the time means my clients don't want someone unreliable. As if the actual migraine aren't bad enough, I have constant visual problems and memory problems. I can't keep up with things and get spaced out.

I am currently waiting to see a neurologist. I have seen one before however, and he basically said "It's migraine. Take painkillers". and that was the end of it. My uncle died of a brain tumor and he had migraine for years before they found it. I cannot convince my doctor to give me any allergy test, or scan. Botox is fairly new on the NHS but IS available with a 90% success rate. I have given my doctor my list of symptoms: no memory, tired all the time, no coordination, taking more painkillers than is good for me, marriage and husbands work is suffering, trouble recognising words and faces, lost 3 jobs, affects my confidence, I don't feel I can go out, constant visual disturbances, beginning to become depressed, poor appitite but she just gave me tramadol. I don't WANT painkillers, I NEED help!

Who will employ me like this? I've finally decided to try for the employment and support allowance but I don't have high hopes. What else can I do? I suffer migraine EVERY DAY and i can't get help. It affects everything I do, and I'm turning into a nasty irritable person. Doctors just brush it off as "just migraine" but please, this isn't right.

I'm scared. I know tonight will bring another migraine.

Strop, what do you mean by no co-ordination?

sorry, hand - eye co-ordination. I used to do calligraphy, I wrote beautifully. Now I look like I'm writing with my left hand. I used to type at secretarial standards, and now I make a lot of mistakes.

No need to apologise! I should be apologising as my messages are stunted... will do longer reply soon. Do your headaches get worse if you cough/sneeze?

I'm not sure what you mean. I dread the thought of a sneeze mid migraine, but if you mean in general does sneezing hurt, no although my sinuses get painful.

No, it's more that your headaches might increase in intensity if you did cough or sneeze, or that you would get a brief but severe headache if you coughed or sneezed - or even sometimes laughed. Do you get anything like that at all?

Please forgive my stunted posts - I'm putting a swing up outside for DS.

Gosh, strop, I have migraines regularly, but yours sound worse. Sounds like you're doing the right thing seeing a neurologist, given your family history. Have you shown your GP the deterioration in your handwriting ability?

You mention the usual triggers - what about blood sugar? If I have low blood sugar, it always triggers a migraine.

Are you on any medication for them now?

Stream thanks for the reply. My GP isn't really interested, I'm going again this afternoon. I've been able to get a private brain and body scan through a charity next week.

I was on pizotifen to try and stop them, but they're only meant to be temporary while investigation takes place, and there never was any. I'm no longer on them. My doc has put me on tramadol and dicloflex, but the dicloflex isn't good for cluster headaches apparantly. While they're supposed to be good for pain, it's not the actual pain that's the problem it's all the associated issues.

Have they never tried you with beta blockers, triptans, anything like that?

Yours sound much more severe than mine, and I'm only just starting to seek treatment for them recently (as they've become much more frequent).

Firstly sympathy

Are they cluster headaches or migraines?
The two have different patterns, I have migraines (thanks, Dad!) and sometimes for 2-3 days at a time but not for weeks. That definitely sounds like cluster headaches, which I once saw written about as the worst pain known to man.

Sumatriptan works well for me, but I find I slow down drastically mentally when I've got one, and it actually becomes difficult to even focus on going and getting a pill and taking it! (I currently have 1-2 tabs stashed in each of my bag, my car and in the med cabinet at home, so I don't have to stumble about trying to find one!)

I also find that a migraine makes me sad and somewhat depressed. It's interesting that serotonin (the feelgood chemical) is affected by most migraine meds. I know that if you're on triptans you can't take certain antidepressants or vice versa (SSRIs) as they have similar effects, and folk on SSRIs often don't get migraines! So might be something worth mentioning to your GP...

You deffo need to be referred to a neuro. MRI will also help psychologically - the only thing that stops me worrying that I've a brain tumour is the fact I was scanned and I know I've nothing there! (Just do not have a scan when you have a headache - they are LOUD)

That's interesting moonbells, my GP just said something similar to me the other day - he suggested that I up my citalopram dose back up to 20 mg, and it was only then that I realised I hadn't had a single migraine the whole time I was on the higher dose (am now on 10mg and trying to come off them, which is probably what's sparking mine atm).

Hello again. Swing/seesaw set now erected so time for a lengthier response....

If I were to cut and paste your post into another forum I am on, they would all be nodding their heads saying "yes, I get that too" and all of these people have something called an Arnold Chiari Malformation. My son has one.

It is a condition that manifests itself in numerous ways, but include migraine/headache, no memory, tired all the time, visual disturbances, fine motor skill issues etc etc (there are dozens - my son has more, some people have way more). I think one of the most common symptoms is headaches when you laugh, cough or sneeze which is why I was asking btw.

It is in it's infancy of recognition, even by some neurosurgeons. Do you know which neuro you are seeing and/or which hospital? Even some neuro's haven't heard of it, or don't understand it (I kid you not!) However, I think it certainly worth you asking the question to the neurosurgeon and hopefully he will send you for an MRI to rule it out (And hopefully find out what it is.

I feel for you. I saw what it did to my son and you have some of his symptoms. You sound absolutely at the bottom. I hope tonight is migraine free for you.

Thanks all for your info, some of it i haven't heard of. It's interesting I used to be on anti depressants but thinking about it, I only started getting these migraines about 4 years ago after I finished them. I will definately mention the malformation.

Moon, yeah I slow down a lot. I don't know my husbands name, or where we met, or how long we've been together. All I know is he makes me safe. I am rock bottom and i could cry. I dont want another migraine, it's going to kill me or make me wish it would. My mum has got me a brain and body scan with a migraine charity next wednesday and they are shocked I havent had a scan yet.

I was on triptans, I'm on nothing now. Nothing seems to have any effect. I feel like my life is over.

On a happy side, I'm glad the swing set is erected and hope it's enjoyed!

oh Strop you really do need anti-depressants I suspect! Constant pain can give you reactive depression, ie that with a tangible cause.

Might stop the headaches and make you feel so much happier! Perhaps telling the GP you are depressed etc might make them change tack and help you.

OH MY GOD.

I've been to my doctor. She's awful. First she mis understood when I told her about the missing spots, and told me to get my eyes tested. I explained about the memory problems, she told me it's because I'm stressed. I told her I can't cope and am depressed, she told me she'd try and get my neuro appt bought forward. I burst into tears and explained all the problems, she smiled gave me a hankey and signed me off work for 2 weeks. I don't work. She signed me off with a headache. A HEADACHE? I WISH it was a headache.

Eventually she signed me off for 4 weeks and told me I could take it to the job center for SSP because I am not capable of finding work like this. When I asked what I should do after 4 weeks, she told me to go and get another certificate.

I could cry. Again.

Strop, I'm so sorry :(

Have you just been to the docs just now?

yes, I don't think she really gave two hoots. I'm not sure what I'm meant to do with this bit of paper.

I think you'll get a bit more money if you are signed off sick. Take it to the job centre. They will sort you out. On the positive side, she recognises you are not well enough to work and will see if she can get your Neuro appt moved forward. When is the one you have?

ok have found out that even tho my doc said to take it to the jobcenter, I'm actually meant to start a claim, and make one every 4 weeks while I can't work. Social were so nice! I hate not being able to find a job but i've been like this months and now i can't cope any more. Fingers crossed that I get something!

xposts Mother. I have to wait up to 13 weeks for one, I don't have one right now. If my migraine gets worse or carries on will go to a&e as she suggested.

Ahhh, so you don't already claim jobseekers?

Perhaps wait a week and ring the docs to check that your GP has remembered to move things along if she can.

I feel so sorry for you Strop. I really do.

No, i dont claim anything, I was enjoying being a stay at home mum! I wanted to go back to work, but all of this over the last few months is just...some days i feel like fighting, and I feel I can beat it, and some days i want to leave my family and go somewhere quiet and let them get on with a nice normal life.

Big un-mnetty hugs - migraines are the pits. I suffer badly from them too and like you am unable to work because of them.

I'm lucky enough to work for a company with a damn good health policy so they're still paying me 2.5 years after I had to leave and will keep doing so until anything changes.

I might be able to help with some new ideas on the treatment front though - I was referred to a neurologist through my private healthcare and he put me on Topiramate (an epilepsy drug) and it made a real difference for me. Not enough for me to work unfortunately (as my migraines are triggered by extended computer use and I'm in IT), but enough so that my migraines now last 2 days rather than 7.

I had to go through the eye-test, MRI, everything else checks before I was given the drugs though, so it is worth getting an eye test if you've not had one recently.

You do need to see a neurologist, glad to hear it's in the pipeline.

Things that helped me:-

propranolol - found I can get away with taking 2 doses a day, bedtime and on waking

HRT (mine got worse with menopause, probably not an issue for you)

Regular routines, including exercise

I have zolmitriptan and buccal prochlorperazine for attacks - they do relieve symptoms but I still have to go to bed, so not much good from work pov.

If you don't take enough time to get over an attack you're much more vulnerable to another as each attack lowers the threshold - so you get into vicious circles.

Good luck

As soon as you get another go to A&E. You could print out this thread and hand it to them, or your dh can explain.

Your doc needs to pull her finger out; you really shouldn't have to live like this. So go to A&E and when they start asking about it make sure there's someone there who can tell them ALL ABOUT IT. (Sorry to shout.)