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migraines and quality of life

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foggydays
foggydays

Migraine has been like a dark cloud over my life for over 30 years it arises when you want to go out and returns when you have been anywhere. My job is always difficult some migraines I can work for short periods of time and then end up in bed. Sometimes I can't work at all and end up going off sick.I feel I am walking a tightrope sometimes and fear losing my job altogether. Like many  stories on here tried combinations of meds seen a neurologist but nothing stops them it is all damage limitation. The GP recently stopped my propranalol because of side effects (it caused some episodes of breathlessness on exertion) for and out of the past month over half the days have been written off because of migraine. I tried tropamax the side effects made me feel half alive I am reluctant to try anti depressants because of side effects. I am so fed up of having to plan my life around migraines I am just recovering from yet another episode so feeling pretty low at the moment  is there any hope of something that gives me a better quality of life?

1 like, 23 replies

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  • foggydays
    foggydays

    Posted

    Hi just responding to the comment on Tropiramate. I tried that for about a month it was not succesful it caused me to havel rather strange, I experianced  mood changes  quite depressed  confussed and generally like my brain was foggy awful stuff wasn't myself at all. I did not give it long enough to assess the efect on migraine the side effects for me were just awful. Everyone is different I am now very causious about taking things the effects of the tropirmate really put me off. 
  • yvonne19574
    yvonne19574 foggydays

    Posted

    HI foggy , I'm sorry your having such a tough time of it.You mention doctor but not a consultant.Have you been referred to one recently ?Drugs and practises have changed greatly and Topirimax should not be used for certain types of migraines.Have you had a neurologist certify what kind of migraine you have? That's tha base to work from.Doctors for all their good work are often limited on their real knowledge and understanding of the various forms of migraine and the appropriate treatments varies with each type.

    Topirimax made me really ill and well out of it abit like the filmFear and Loathing in America with Johny Depp.Look at the Migraine trusts site and Migraine Action. Contact them .Search specialists out.30 years is along time to stay with one assessment .Bottom line you have to do a lot of searching and research yourself and then educate the doctors in a gentle way .Research and new practises are happening all over the world.nEurologists and neurosurgeons are sharing research and data .

    • yvonne19574
      yvonne19574

      Posted

      I forgot to mention a drug that may help you need to be a named patient by a consultant to get it because it's not recognised by NICE although it's not an expensive drug.It does have some Side effects on certain people these can be unpleasant but for others on the right Doseage it can give a new lease of life.Theres always hope. Fear of what if is the greatest stress factor for those with Hm and migraines. the more you educate yourself keep a diary recognise triggers avoid agrivators and share with others who often understand very little about it your self esteem will improve.

      iTs not easy with the fear of losing your job , you have rights seek out disability advisers, occupational therapists that employers have to employ in medical cases.Get advice from your Union if you have one.Living in fear  will increase your stress levels and aggravate your attacks so make a list of things to do.Systematically approach a to do manner of finding out, 

      self help ask others on this site.If you want some positive reading Dr Paul Shanahans reports and conference lectures always. Illustrates a determination to help and seek improvement for sufferer and hopefully eventually give us better way of life.After 30 years you need some good news and support .Stage by stage is a challenge but what have you to loose ? 

    • yvonne19574
      yvonne19574 helen01813

      Posted

      Hi Helen , sorry I've not been back to you sooner ,just had another mild attack but couldn't remember my password again .Every attack now seems to affect my short term memory as well as some long term that has not come back yet.The drug is Flunarazine .iT does have side effects if your of a nervous disposition or susceptible to depression it's not advised long term but on a short term small quantity basis it does help.For a friend of mine its

      been her way back a to normal existence , work, driving, travelling without

      support  abroad etc.I had a bad time of it when the dose was increased but at a small dose it did help reduce attacks and the severity of attacks.Good luck and keep posting.

  • Sorehead11
    Sorehead11 foggydays

    Posted

    Hi,

    It is a relief to hear stories so similar to mine but at the same time it makes me sad to think others are suffering. Thank you all for sharing your stories. I too, am having a hard time with chronic migraine and much of your post Antpring sounded familiar. About the only differences are I am on Botox (4 rounds) and have just started back on Topamax (and, yes, feeling like crap). I am 45, female and have suffered for about 25 years, being diagnosed with chronic migraine about 12 yrs ago. I live in Australia and have seen several (7) neurologists and waiting to see a new one. Along with the usual bag of alternative practitioners, physics, chiros, massage, etc. 

    I have just had another few weeks in hospital after getting to a point where I can't manage any longer. I was also taking Targin to get through work, along with Imigran (my saviour). I am also a teacher and not giving my best at work. I had a lignocaine infusion for 8 days with little effect, was sent home only to crash and have to go back in a worse state. It was horrendous. I think it is the darkest place I have been to with these stupid migraines. I was so helpless, it has left me shattered. I am normally pretty upbeat and don't let these migraines shake me too much but I feel like I can't see clear at the moment. Still headaches everyday, feeling fuzzy and zombie-like. This sucks. Sorry to unload but I feel you would all understand.

    😐

  • sbkris
    sbkris foggydays

    Posted

    Helen,

    Sorry to take a while to respond. Had to search around for my password! Memory issues thanks to previous migrianies!

    I'll try and outline what I did. Plan to put an ebook up on amazon also. So thanks for asking.

    I am pretty much migraine free at this point...after suffering from stroke like, go to hospital stuff a year ago. Here's what I've done so far.

    Supplements

    B12

    magnesium

    white willow bark

    vincopocene

    Vit C

    daily multi vit

    Vit D - all supplements had to be gluten, additive free

    Organic green tea

    Gave up all wheat, dairy and caffeine. ( I am able to have 1 cup of coffee with a little milk or almond milk now and seem to do okay with that.) If I add wheat or gluten of any kind the headaches try to start up again. Its good to really research what foods have wheat or gluten as it's hidden in many foods.

    Don't eat much sugar either. I know this probably doesnt sound like much fun- but there are actually lots of new books with recipes to make tasty food without the stuff that was making me sick. For that first 'recovery year I ate at least 5 cups of organic veggies, salads per day. And only occasional organic/grass fed meat or fish.

    Rest was also a huge part of my recovery, and I know that's hard to do for most. I sat out in the sun, read a lot, watched funny movies. It was difficult financially for us, but I figured it was my only hope of ever being able to function again.

    Also did a lot of stretching and massage of my neck muscles.

    Stayed of the computer as much as possible.

    Detox baths of 1/2 cup of epsom salts for 20 minutes several times a week.

    Sometimes 1/2 cup of empsom salt and hydrogen peroxide baths also helped.

    I took an asprin/magneseum/cafeeine medication at the first sign or twinge of a headache. Prevention seems to be huge for me.

    Without question, for me cutting out all processed foods was the key to getting better. I also added a daily high dose probitic capsule and yogurt to my diet. (plain, without added sugar or colorings.)

    Also, cutting out 99% of my stress and situations that were stressful.

    Hope this is helpful to some of you,

    I did not take medication, except the supplements, as the medication knocked me out too much. Hang in and good luck to everyone! I'll look through my notes and see if there's anything else that comes to mind...

     

    • helen01813
      helen01813 sbkris

      Posted

      Thanks a mill for taking time out to respond. Yes I agree with you diet is everything. Keep well.
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