migraines and quality of life

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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?

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  • Posted

    Hi Foggydays, sorry to hear you are having such an awful time. The forum keeps me going especially when I am coming out of a migraine and feel pretty low. At least you feel that you are talking to people who understand. I wonder how many working days are lost to the country each year. Some bright bod should work it out and then perhaps the gov would set up a working group to improve the situation.
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  • Posted

    Hi there. I can identify with your emotions at the min. You have definitely came to the right place. I've been crying for days and came across this forum yesterday and within minutes I was made to feel like I wasn't alone. We are all in the same boat and although like yourself I've not seen a light at the end of the tunnel yet it's comforting knowing there is people in these blogs that are getting help and that they are willing to help anyone that needs it. Sorry I can't be more informative with medical help but be assured that support is only a keypad away.
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    • Posted

      Hi Roisan, I am going to give magnesium glycinate a try after reading on this site that it can help migraine sufferers. I know Holland and Barrett sell this product or you can get it on line. Not every remedy works for everybody because we are all different but it's worth a go. I think the recommendation came from a forum member from the US. Best wishes.
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  • Posted

    It does help to hear experiances of others thanks for your replies. I am feeling pretty low at the moment I normally pick myself up but the frequancy of the migraines has been getting to me recently.  I am due back to see the GP perhaps they can offer some more ideas.
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    • Posted

      I used to get 2 migraines a year on average then I had none for about 10 years before a severe viral attack kicked them off. Now I am lucky if I can get symptom-free for upti 5 days with really severe symptoms occurring about 2 weeks in every 4-6 weeks such that I feel never without a migraine. I cannot bear loud noise and rarely am able to answer the phone. Talking to others through the forum keeps me going. Some have much worse symptoms than me or have suffered much longer. It's difficult to get help. I wanted an MRI but my CT was clear 2 years ago so my GP feels it is not warranted. I wanted to pay for one but he feels I would be wasting my money. Occasionally I get cluster headaches with the migraine and that really is the worst. People around me are supportive but it is wearing for them also and means events can be difficult to arrange. I have had to cancel 2 at the last minute so far this year. I hope you find something that makes your migraine more bearable, perhaps yoga and acupuncture if medicines don't help. Good luck xx
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  • Posted

    Hi -

    What have you tried so far?

    I no longer have HM after changing a lot of things in my life.

    (Knock on wood!!) Happy to share what I did with you.

     

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    • Posted

      Hi sbkris,

      New to this site but see you have researched and have had success with treating your migraine. Would you mind sharing some of this with us? I have suffered migraine since childhood but over the last few years it has developed into chronic migraine, now at the stage that it is present more than not. I have tried pretty much every preventative on the market without success. Great to hear someone is migraine free. Congrats. 

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  • Posted

    Hi foggy days, After so long a time struggling with your migraines and work I can really understand through my own experience in Education as teacher then lecturer and course leader the fear of how bosses would react to my illness always worried me.Often I worked extra hard to over compensate and prove to them and myself I could still work all hours under pressure .Some bosses like doctors were very understanding others were only bothered about the work to be done and keeping the show on the road.I was fortunate the majority of my colleagues understood .I moved area and took on anew job skill wise I could do it health wise I struggled.I did get warnings from my body things were deteriorating but the doctor at the time dismissed my fatigue and increase in migraines just saying slow down.Two weeks later I had the most severe attack I had ever had, no way fit for work for weeks my body was a rag doll, basic words but no sentences, unable to balance or walk without aid or wheelchair.Unable to drive or look after myself because of ongoing attacks my family took turns in staying and looking after me.They all lived away they all had jobs or degree study.Unable to construct a sentence remember objects walk or stand for long 

    I had to resign.It took me several years and paying to see 3 different consultants both In England and Wales  and researching on my own I discovered a UCL HM consultant.I have never looked back.Finding a consultant who understands your life experience and how much this condition can change your life is very important.

    The majority of my doctors were and are now supportive and are open to new developments and work with the consultant .I was recomended to look on a website for Migraine trust that helped ,this site is very positive because you will discover none

    of these people are alone because they realise there are many HM sufferers out there

    who feel empathise and understand your highs and lows because they've shared similar experiences .Whenever HM knocks me down now I rest knowing that it will pass that there will be a better day either tomorrow or in afew  days time.If your not happy with your medication because of side effects really having negative effects then 

    see your doctor , if there's little support seek another's opinion .Seeing one neurologist is limiting the ammount of "knowledge". Seek out others if you have to and ask for a second opinion.If your condition has changed and you've kept a monthly diary then highlight that change and you have very right to ask for further Investigations or a second opinion.The UCL in London is not accessible for everyone

    I travel over 5 hours to get there and it costs but if that's what's needed for improvement and more skilled care then I will do it gladly.Look on the website of the Neurology and Nerosurgery at the UCL.My doctor referred me for a consultation.

    Waiting lists are long, but where are you going meanwhile?There are other facilities around the country where very specialised consultants are practising.Dont give up.

    I do hope you get some relief from HM soon.Take heart from others hM is a complex

    condition sadly not fully understood by the majority of the medical profession but there are research investigations going on in various countries, these collate and share their findings with others.Maybe there should be a HM day awareness day

    on local radios and the media linking areas across the country.

    Good luck , wishing you relief soon.

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    • Posted

      Hi Yvonne thank you for taking the time to reply and sharing your experiances..  What has happned to you sounds very frightning my heart goes out to you it sounds like you had something similar to a stroke. How are you today and what treatments did you have? Tell me do you pay for the neurologist privately? 

      The number of people who have HM astounds me I never realised for years that what I had was migraine they first started at 12. I did  my own research and self diagnosed then went to see my GP who confirmed it. But it runs in my family my grandmother had them and my mother they called them bilious attacks it they didn't realise what they were they took themslves off to bed in a dark rom.

      I am a qualified nurse work is major issue for me my biggest fear is losing my job. You would expect the NHS to have some system that helps but it makes few if any allowances. I have to work shifts 10 years ago they allowed me for example to be excluded from night shifts because  sleep depravation is a major cause of starting a migraine,  today that concession has been withdrawn I have to do my share, this pushes me to the edge. If I take more than 3 days sickness per year I have a black mark against my name if you do it on too many occasions they can dismiss you. So in the so called caring profession having a neurological condtion buys you no consessions. I end up negotiating with my manager and take holidays as for sick days it is a fine tightrop I walk.  

      I have investigated attending the London migraine clinic but cost is an issue. I will check out the web site you advised. One good think to come out of the internet is information sharing. 

       

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    • Posted

      Hi Foggy days 

      Several things I suggest you can look into.are you in a union? There is a disability act that addresses severe migraine as a disability therefore your employer has to adhere to specific practices and regulations.The nurses union used to provide legal representation find out if that's still available.

      My sister was in nursing for 30 years and had to use her rep and their legal advice to get her case sorted out.

      I wish referred to a Mr Goadsby at UCL by my doctor but the waiting list was a long one and I was desperate so I paid for an initial consultation .It was a few weeks wait but worth every penny and not as expensive as I originally expected.Mr Goadsby is highly regarded in Neurlogy circles , he diagnosed me but was leaving to go to the USA so he referred me through the NHS to see Dr Paul Shanahan at UCL.He sees me on the NHS.There is no way I could afford the treatment otherwise., he's an excellent neurologist and explains everything and the choices and treatments available to your particular situation.There is a team of headach clinic doctors there very professional and understanding.There are other specialist neurologists listed on the web that may be nearer where you live., read their Cvs carefully.

      There is a drug but you have to a named patient to trial it by your consultant 

      it's not available on the NHS called Flunarazine.It really works for some for others like myself the side effects when it was increased made me really ill.I know someone who it's been a life saver to, she's got her job back, her health back ,drives and travels abroad .There are many meds out there with a good neurologist you always have options .Fear and stress as you already know can make attacks more frequent and severe , so share your concerns with the union rep and close friends or family.Never give up trying to improve your condition but do rest and relax as much as possible when your poorly.

      Some Hms on this site are referring to meds I've never heard of so things are developing all the time.Keep in touch and good luck.Yvonne.

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  • Posted

    Hi - so glad you came on - I had a particularly bad  week.  I know how you feel when you are just so fed up with migraines dictating your life and all the choices you make.  I too have had migraine since starting periods and am now nearly 40. I'd like to feel normal, but I find myself having to consider:

    how much water I'm drinking

    making sure I have caffiene, but not too much

    eating little and often to keep blood sugar even

    spending a fortune on vitamins in the hope these might help

    making sure I rest and sleep well

    trying not to get stressed

    watching I don't do too much or too little exercise

    not getting overly emotional or excited

    not wearing strong perfume

    not being under bright light

    (all these things can set me off)

    Over the years I have tried every elimination diet/ food possible

    seeing chiropractors, osteopaths,herbalists, reflexologists, acupuncturists, chinese doctors, 

    I have been to the headache and migraine clinic and exhausted all the list of possible drugs preventative and for treatment during an attack - The only course of treatment left is Botox (which I need to investigate further).

    I couldn't continue teaching anymore and had a mini breakdown last year (also largely due to taking Topiramate!)  

    Despite trying to change my stressful lifestyle and do the right things - I still find myself having 10-15 attacks a month and my children and husband having to run round looking after me and picking up pieces.

    I hate it as every attack means you get further and further behind and the tablets make me grumpy and lethargic.  I feel like I have an invisible disability.  Work have accepted it is a disability and will give me a higher allowance of absences.  However, it is a constant fear/ pressure of whether I will be able to do my job.  When I have an attack in school and I'm looking after children I just have to carry on despite feeling like I'm not giving them my best - because if I went home every time I had an attack I wouldn't be there much.  So I just battle through - but this prolongs the attack and the severity and leads to a vicious cycle.  Also the financial impact on my life just adds to the stress and therefore migraine.  I can't even begin to guess how much money I have thrown at this over the years.   I must admit I am very low at the moment too.  I'm just glad to have found this forum and have a shared whinge with people who "get it"

    In the words of Dory from Finding Nemo "Just keep swimming!"

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    • Posted

      Hi Antpring, your story is heart rending, more so because it is so similar to many people. I sometimes wonder if neurologists have experienced any of this other than by the people they treat.

      Also, has anyone ever had a good response from Topiramate?

      I agree with you that the forum helps people get through bad times which is why, especially when well, I try to give support because without support if others on the forum I think I would have given up by now. I hope you will hang on, perhaps your gp can refer you back for a review. There has to be something to help this awful condition. I wish you well.

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    • Posted

      I too was on to topiramate and ended up loosing too much weight and severely dehydrated. Although they did work for about 2 months everything started to decline and the smell of food and taste made me sick so much so I couldn't eat. My neurologist actually told me I'd love topiramate as they were 'skinny pills' . What a wonderful way to describe something that makes like so miserable sad
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    • Posted

      Hi, There isn't much in your post that I can't relate to. I worry all the time about my job and my work will not recognise migraine as a disability so my absence allowance remains at the same level. This causes more stress and worry. So frustrating. Definitely an invisible disability. Not to mention the fear of the pain of the next attack!! Helps to know I am not alone though.
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