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chronic migraines

(43 Posts)
Muststopworrying Mon 02-Feb-15 17:06:45

Been on topriamate for 6 weeks ( started at 25mg, worked up to 100mg) have reduced the attacks from what would be maybe a couple of days a week without migraines to maybe one a week where I have just had to lock myself away in a room. Side effects from medication are tiredness and slight pins and needles in my hands. Not been able to work for 5 months due to the severity and frequency of the migraines. I am being monitored by the specialist but I am torn between accepting the side effects and giving work a try or being honest and the risking having to try something else which then could cause issues at work. The migraines have not been conclusively linked but I did have viral meningitis in the summer. Any one had similar experience? Many thanks

mollymophead1978 Mon 02-Feb-15 18:21:48

Hi. I'm currently under investigation. Suffered migraines since 16 now 36, had two severe ones in the last two weeks, lost 50% vision in right eye and told it could be permanent. Mum of two and a nurse so I'm scared of going back to work in case I have another attack. Been prescribed nadolol 80mg with in turn makes me tired and poor circulation. Migraines r horrendous and debilitating, supposedly the artery to my retina occluded in the last attack. U have my total sympathy. Have u had MRI? Xx

TheWildRumpyPumpus Mon 02-Feb-15 18:33:26

I've been off work for 5 years(!!!) with migraines.

Similar to you, I went on Topiramate which basically got me from daily migraines to 2 a week. They are made worse by using computers or watching TV in my case, hence not working.

I have started having steroid injections in my occipital nerve which has helped a little, they last less time than they used to (one day in bed rather than two).

I see Professor Goadbsy at Kings College hospital, he's one of the leading headache specialists in the UK and trying out all sorts of new things.

Muststopworrying Mon 02-Feb-15 19:30:07

Thanks for you replies. Mollymophead1978 I have had a pretty rotten time to be honest. Viral meningitis as well as unknown infection somewhere in body, my CRP was extremely high and was until end of October from when I was admitted to hospital in August ( endless bloods and anti biotics). It was as though virus and infection were having a battle between them. Once my CRP was at an acceptable level they did a MRI as from the August I had and still have limited feeling in the left side of my face, dizziness, and terrible headaches and light and noise is not good. Or as I put it can't cope with lots if things. Doctor said could be slight ptsd as they couldn't stress how ill I was when admitted to hospital ( a bed was ready in intensive care at one point).
Referred to a neurologist as MRI was clear of anything serious but obviously could tell headaches were an issue hence chronic migraines. Couldn't take beta blockers as history previously if having an inhaler. Have a desire to go to work as a teacher and not worked since September but neurologist said treatment had to be effective first. Said would take a month to get to level and then a month to see if effective. Work is supportive but it has triggered OH and absence policy. Was in tears with the neurologist when I stupidly thought take a tablet for a few days and feel better and then go back work. Luckily think it is working. Trying to stay positive as could have been so much worse. I have kept a diary and there is no pattern. Scared to be honest when I go back to doctor as need to go back to work as main earner.

mollymophead1978 Mon 02-Feb-15 20:44:22

Ahhh me to trying to stay positive, it's hard though. U have had it tough, meningitis must have been so scary. I'm in my first month off but no doubt I will need a return to practice interview. Just long to feel 'normal' again and to be my old fun self. I'm so glad your tablets seem to be working, I cried on the GP last week and felt really silly! Keep in touch and let me know how u get on. I got discharged from headache clinic the day before all this happened, sods law. I feel a 're referal coming on. Take one day at a time, I'm so bored of daytime telly.........Lol x

Muststopworrying Mon 02-Feb-15 22:35:59

Meningitis was scary but not at the time to be honest started feeling 'ill' on the Tuesday morning and felt bit better Thursday even went shopping then went off sides again but it Saturday night Sunday morning when finally thought ummm something not right here. Can recall sat in the room at walk in clinic and hearing the doctor on the phone to hospital saying 'do I need to phone for an ambulance or can you arrange' and I just want ' my mum's in the waiting room she can take me'. I also thought I would go home the same day!!!! Thankfully viral not bacterial and if the NHS gave points like Sainsburys I think I would have enough for 6 weeks in the Seychelles!!!!!! Up till a week ago not been a week where I haven't had to go to some NHS establishment for some reason or another. As for daytime tv!!!! Let's just say my poor knicker drawer has never been so organised! !! I will let you know how I get on! !!!

LadyRainicorn Wed 04-Feb-15 14:24:07

I'm on topiramate (175mg a day). Not sure I've had a week with zilch migraine symptoms in it but I've had many now where I've not needed to hide away.

Mine ratcheted up from maybe one every 4 months to constantly (and I mean constantly) last June/July with no precipitating events. I gave up trying to rest in a dark room, cos there's only so much of that you can do, and kind of tottered and drunkenly wheeled about. My speech was dreadfully slurred as well.

How long have you been on the topiramate? After about 5 months I no longer get the pins and needles. I don't know if it's still making me tired, there's plently of other candidates for that.

I got quite frustrated talking to the GP about it - one of them was under the impression that if I ever had a migraine again it meant the meds weren't working and he'd take them away. They mean I can walk, talk and communicate with people! They are the ONLY reason I am back at work! And just because they are suppressing the daily expression of the migraines doesn't mean that if I'm stupid or unlucky enough to get exposed to my triggers I won't get a migraine. Just like asthma really.

LadyRainicorn Wed 04-Feb-15 14:25:47

I've been on topiramate longer than 5 months , just realised I worded that badly. I think I let the rant get away from me!

Muststopworrying Wed 04-Feb-15 15:56:29

I have been on for 7 weeks. Went to docs today and signed off work for another week then can go back. Been off for 5 months. Last 2 because of waiting for the treatment to be effective. Started gradually and on 100mg. The frequency has greatly reduced and side effects of tiredness and tingling are the lesser of 2 evils. Not that I lied to doctor but need to go back to work as starting to put pressure on me. GP kind of understood as was in tears today as got meeting tomorrow when she wanted to sign me off longer. Another week which in effect means 2 as in a school and also a note recommending a phased return. Like you such relief has the treatment given was worried she would take me off. Have to say no triggers for me really only the few I have had whilst on the medication have had starting indicators like sudden lack of appetite, weird taste and smell and can yawn for England.
Can I ask have the migraines prevented you from working?

upallnight2015 Wed 04-Feb-15 16:10:56

Hi, I have had chronic migraine disorder for approx 10 years, I'm 33 now. This evolved to almost daily severe headaches but I could still function, and severe migraines about twice a month, which could last up to 3 days (slurred speech, left me in bed unable to do anything or go anywhere). I started on topirimate about 4 years ago which reduced things by about 25 %, then went on occipital nerve block injections 18 months ago which changed my life!! I only get pain/ migraine symptoms as they wear off now. Currently I am pregnant and totally migraine free- have not needed a block since I became pregnant, which can apparently happen to some women.
If they return post pregnancy I will just go straight in for a block.
Just to tell people, don't give up hope, I thought I would never find a treatment that worked, and my work and personal life was affected daily.

upallnight2015 Wed 04-Feb-15 16:12:50

Meant to say- I am still on topirimate the consultant said the block works with it just if anyone finds that useful

LadyRainicorn Wed 04-Feb-15 16:17:24

They did until I was on current dosage. I was in too much pain to think coherently. I was also easily confused and had slurred speech, found it really difficult to communicate.

I don't think I had as much time off but the pressure to come back is horrendous isn't it? All the fucking flip flopping from 'don't push yourself, look after yourself etc' straight next to 'if you're not in by x, trouble will ensue'. They're being wankers as well, I'm supposed to be working off a monitor instead of just my laptop but they've still not given me my own. Since bloody Sept/Oct!

Muststopworrying Wed 04-Feb-15 17:50:05

I am lucky that the diagnosis was quick and treatment quick. On the bad headaches days I call it 'plate spinning' in the sense of can cope with say driving, can cope with noise, can cope with the TV on but if the TV is on and daughter us talking and then the dog is barking it can get to much if that makes sense. Also since being on the treatment I realise what the neurologist said there is a difference in them getting better and you banging. The difference since on the medication shows how much I was coping hence why only have say 1 a week is a breeze.

Work wise yes have the ' oh get better' but basically while I am not there they have to pay someone else to do my job. The union say it's procedure. At times feel like I have done something wrong being ill. Just been on the phone actually to the local rep about my meeting and he said he will try and get it changed to a return to work meeting. It's that circle of OK stress isn't going to cause a migraine but getting a formal looking in personal letter isn't going to help. I will worry about such things. Daft really as when I was told I had chronic migraine syndrome and needed treatment I was like. So I take a tablet and can I go to work next week? After the neurologist stopped laughing (hypothetically ) it was ummmmmmmmmm minimum of a month to get to effective level then minimum of a month at the level if it works. Followed by that is of cause not taking into account everything else.

Are chronic migraines covered by the disability act?

mollymophead1978 Wed 04-Feb-15 18:49:13

They should be. They are defo disabling. Had another yesterday in tesco, think it was the lighting, anyway been referred to neurologist again today so fingers crossed xxxx

Muststopworrying Wed 04-Feb-15 19:06:14

Oh mollymophead!!!!! Tesco lighting is horrendous!!!!!! Have to admit back in September / October time when it was either hubbie goes and does shopping on hos own and come back with nothing but an empty bank account or I go with him I would venture out with him. When the head / dizziness / sickness happened it's amazing how quickly a checkout is opened!!!! Apologies new to the gardener who tended to the garden beds is all I will say!!!!!! grin

LadyRainicorn Wed 04-Feb-15 20:56:32

Yes you are covered by the equalities act 2010. Even if you get medication that 'fixes' you you can consider yourself to have a disability and they need to take it into consideration, make reasonable accommodation/adjustments subject to ability of business to cope and they can't discrminate against you if you've informed them of your problems.

Muststopworrying Thu 05-Feb-15 06:24:06

That is worth knowing ladyrainicorn as could be useful in the future is is listed as one of the conditions then?

LadyRainicorn Thu 05-Feb-15 09:24:25

They don't have a massive list of conditions on the act or in the explanation of the act. But in the explanation they do go 'eg migraine' as an example of a chronic condition that can leave someone with a disability. And you are supposed to consider the employee as how the are without medication or aids not tjey have meds/a stick, I don't need to give a crap about them now cos they're fixed iyswim. If you google loads of very helpful sites come up. They trouble is getting your employer to abide by it!!

Muststopworrying Thu 05-Feb-15 10:27:04

Hopefully will not get to that. It's the not knowing. Getting people to realise a migraine is not just a headache and do you want a paracetamol is a battle! Feel like getting boxing gloves bashing around the head, getting bright lights whilst playing loud music and saying their you go and can you make me a cup of tea whilst juggling and riding a unicycle shouting out the works if Shakespeare! !!!

LadyRainicorn Thu 05-Feb-15 11:35:15

Have you had the random cures yet?

onepieceoflollipop Thu 05-Feb-15 11:49:16

sympathies to everyone. I am holding my migraines at bay at present with imigran. Had them since age 10, clear hormonal link. If they get terrible I go to bed with dihydrocodeine.

One helpful smug "explained" to me that all migraines are caused by dehydration, and if I would just drink some water it would be fine. (I didn't punch her!)

LadyRainicorn Thu 05-Feb-15 12:05:16

The most bizarre one was a yogic breathing cure which would also mean I wouldn't need glasses anymore. I asked if it would change the shape of my eyeball then (cos, you know, that's why the focal length is all wrong etc) and got loked at as if I was mad - 'no darling you just need tobreathe properly and de stress and your headaches will go away and your vision will clear and you won't even need your glasses!'

amarmai Thu 05-Feb-15 12:12:02

For me the miracle cure for migraine is the herb feverfew. I just ate a few leaves as i felt the start of another migraine - worth checking out.

onepieceoflollipop Thu 05-Feb-15 12:36:11

feverfew did absolutely nothing for me sad

LadyRainicorn Thu 05-Feb-15 14:13:12

You will pry the topiramate out of my cold dead hands and it hasn't even cured me

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