chronic migraines

[Muststopworrying]

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

I take 50mg in a morning and same at night. Tried amitriptyline but really zonked me out and and could not function at all, this was before I saw the neurologist. I am also on sertaline very low dosage to stop the side effect of low mood with topriamate.

Ha ha...muststopworrying u made me giggle, my hubby shopping is the same. Need to do a survey on supermarket lighting, find out which one doesn't set me off. ?? xxx

Sorry to hear so many are suffering. Can I just jump on the bandwagon? I'm recently started toparimate..just got to 75mg? I'm just wondering how long it took for people to notice a significant impact? I think there has been a slight improvement but not enough to get me back to work by any stretch. I have an inconclusive diagnosis currently following labyrinthitis 18 months ago i've had a constant headache and vertigo and they now think maybe it's due to visual dependency and migraine.

Like you I noticed a slight improvement on lower doses but I wasn't 'better' until I was on 150mg. It took a while to step up to that dosage and then a week or so on that dosage for my head to clear of the migraine type fog. There's the additional difficulty that some of the side effects include tiredness and slower mental processing which can take a while to adjust to if you experience them.

There are other treatment options around, unfortunately it seems to be a horrible waiting game to find one. Labrynthitis also sucks, I had that during my last pregnancy but it luckily went away after a month. Is that all gone or has it morphed into what you're experiencing now?

Awaywego1 with me I did not feel any impact until I was I was on 100mg and then it was only really till I had been on this dosage for a week or so. How long have you been off work? It is truly truly horrid isn't it? Are you experiencing any side effects? I just wanted a magic tablet that worked. I am getting some comfort from the stories here as like I have said it's the human experience and the honest not the 'text book' or the ' just a number next patient'. Think I have been extremely lucky but still in one sense at the end of still a possibly long journey.

Oh mollymophead my hubbie is unique is so many ways and if laughter is good for a marriage well 60 years here we come. Not a week goes by with out me rolling my eyes thinking why???? May only have one child but at times I think I have 2. When I was first discharged from hospital with endless antibiotics to fight the unknown infection on top of the rest because of the meningitis I had the lovely everything tastes of ear wax taste. The only thing that didn't was jelly babies. Sent him out granted Sunday afternoon to get milk, bread a a bag of jelly babies. Let's put it this way no petrol garage in a 50 mile radius had any left and 6 months later they still fall out of every cupboard in the kitchen!!!

Thanks guys..No idea its all kind of just morphed into one thing...I'm not even sure now if I ever had labyrinthitis. Although I did test positive for bppv at one stage although I'm still awaiting more balance tests although my balance isn't amazing it's not the major problem. I've having quite a lot of topamax side effects in my head and a buzzing feeling in myw body but it's hard to unpick them from the vertigo but it has stopped me sleeping and given me a numb right knee which is bizarre
I've been off work this time for a month but was off for 2 months last year and have had a few odd weeks off during the year and lots of odd day's so it's not good. I've also got a long standing diagnosis of cfs as well as thyroid problem so mg sick record wasn't great anyway..I am making progress it's just very slow..last week I couldn't get out of bed at all and the last couple of days I've managed to do a bit of housework in between lying down but I'm a long way of going back.

I understand about you say saying morphing into one. It's all a balancing exercise. Starting any new medication for anything can have side effects which also are the symptoms of the condition. What works for one person does not work necessarily for another. Just when you think yes it is all going splendid then pow something else kicks you where it hurts. All is good when you have supportive doctors and a network of people. Up till the summer my health was on the whole pretty good. Other than a couple of colds etc nothing really major at all. Spent weeks thinking is this how it is going to be now. But thankfully brilliant medical people make me realise all will be well. Frustration isn't going to help. Still would like to sit opposite some people and very politely tell them where to do one at work and where they can ceremoniously stick things. My illness is the gift that just keeps giving as been confirmed today that I am diabetic as well now another lovely can't quite say not connected but most likely is connected to you basically fighting to stay alive in the summer. Oh well I am alive!!!!!!!

Oh no, diabetes as well. Poor u. Can u diet control it or insulin. P.s defo no jelly babies especially for u ?? Xx

My dad claims he has completely controlled his diabetes with diet so there can be hope

I hoping I can control it completely with diet. Could do a deal on jelly babies
Positively let me see? Free eye tests never had anything free in my life!!!! Other than diabetes and chronic migranes! !! Oh and scabies from a child in school once. No sucker is having my Thornton's fruit and nut toffee though!!!!!!! Technically because it was given as a present last week before I knew I was diabetic it is allowed isn't it? If I had ate it when I got it then no one would have been the wiser.

I think the Thorntons should be consumed in the 'last treat section' like my 'last treat before dieting again section', another positive Thorntons do diabetic chocolate, that is if chocolates not a trigger!! Xx

Sorry to hear about the diabetes diagnosis muststop Hopefully you can control it with dieter..my mil has manage to totally reverse hers by carb counting although she was quite strict and caught it early.

I'm surprised no-one's done a post and one with a miracle cure for diabetes Maybe it's Thornton's!

If you have similar problems to me in supermarkets with the lights and noise, does anyone have similar isdues with car headlights/computer screens/fairy lights? And any tips on dealing with them? I've got rough and ready methods of my own but it'd be good to hear what other people do. Cos, you know, I'm not always the most sensible of people!

Ooh I'd love ideas for this as lighting particularly strip lighting is a massive trigger for me. I've got a bluelight filter on my phone which seems to help just because it makes my screen less bright. I'm waiting for some migralens glasses to arrive but they are so fugly I'm not sure I'll be able to leave the house with them on not a huge concern at the moment as I can't leave the house

I find headlight lights on cars a nightmare!!! Lighting in supermarkets and the noise. I am glad now for the lighter nights and hopefully when I go back to work will only have to do the journey to with the horrid headlights. I looked like a film star in the winter months as would put sunglasses on to drive!
Because I do or rather did lots of needlework I have craft lamps in the house. Funny when you drive past as makes the house look either like a tanning parlour or something on one of those crime programmes.
This is what is really concerning me going back to work as the environment is artifical light / noise / lots of activity and at least one journey in the dark. Suppose will just have to see.

Love Thornton's being a cure for diabetes. Hear shoes and handbags could be a miracle cure for chronic migraines?

Yesterday from mid morning was horrid. Not so much a migraine but what I call a really really bad head. Was determined it was not going to get the better of me so got into bed, shut the door and hid away from the world. Just the tail end of it today so fingers crossed. Slept through and forgot to take last night's topriamate bit least of my worries I think. Suppose enough I system anyway but 1 isn't going to make to much difference surely?

Hmmmm, dunno, if I miss a dose my head is buggered up for about 3 days, sorry. I hope you don't feel so bad now.

I wear glasses so I end up using my prescription sunglasses a lot. I'm going to google whatever migralens are, they sound cool. Plus I sat on my actual glasses, doh!