Hemicrania Continua

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I have been suffering with headaches for 10 months and am struggling to get them under control. I have tried Amitriptyline, Nortriptyline, Topiramate, Naproxen, and all of the other usual suspects. I have now been diagnosed (tentatively) with the above condition. The pain is always on the same right hand side behind the eye. It wakes me regularly. I can't sleep on that side. My eye waters when the pain gets too bad and my eye cannot cope with bright lights and causes pain. Just been prescribed Gabapentin, Indomethacin and Lansoprazole.  Can anyone give any adivce? Any support would be much appreciated as this has completely changed my life. Thank you!

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6 Replies

  • Posted

    Dont waste months waiting to se if gabbapentin work ..useless..lanoprazole are to protect your stomach from meds you take..never heard of othr med try something else ..good luck im due for botox in two weeks aftr 40 years of daiy headaches migraines
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  • Posted

    Indomethacin/Indometacin  is prescribed specifically for Hemicrania Contitinua. It's been found to be very effective with certain variants of the headache.
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  • Posted

    Hi Tina, I am so sorry your illness is affecting your life , although I don't have your illness like everyone on this site each person has had their life changed to some degree.Its good your talking about it and asking for help.Someone will have similar symptoms .I have had the experience of Gabapentin sadly in my case I had a strong reaction and came out with a rash very similar to hives and swelling , but I'm sure you will find others that Gabapentin has helped them .Do you keep a chart or diary it will help you and your consultant grade the pain 1-10 , 1 being minimal .Have you recognised any triggers , does fast editing in films and TV affect your eye

    or do you get a sick feeling at certain lights, sounds, smells?

    Does working on a computer or telephone affect your head or eyes?

    cErtain foods may trigger pain and of course alcohol can have a negative factor as well as smoking.It all sounds obvious but it all can help you take some control .Becareful not to get dehydrated  and I presume you have good light sensor glasses or sunglasses.You haven't stated your age or your occupation or study.Huge long electric light strips damaged my eyes and gave me very bad headaches before I developed migraines when I was a typing clerk in the late 60's.Different LED lighting and strobe lighting can trigger an attack so I avoid bright light and use specific lenses.

    I hope your meds help you , if you get side affects that make you feel ill,

    swelling, rashes difficulty swallowing etc make notes and contact your doctor/consultant.You will soon realise there are many medications and

    helpful advice.Ive always asked when I don't get what the consultant is saying, and I take my husband or daughter with me so they can listen and take in things and points I might miss.

    When you see the doc or consultant take your notes and diary and make a list of questions you want to be addressed.Keep posting your progress if you have other things affected ie work or study please ask, people on this site can give you some good guidance .


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    • Posted

      Thank you Yvonne, I found all of your advice really supportive and helpful. It is really good advice and I will definitely be keeping a diary.

      So far I have not found any foods that make it worse but do struggle on the computer for long or reading for long periods.

      I took my partner with me last time which was really helpful and it is great to have someone to listen to the advice.

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