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Going backwards

Hi all
I am new here and after reading some of the posts it makes me feel somewhat normal. I will try to keep it as brief as possible. I am a 42 year old female.6 years avo i was diagnosed with chronic migraine. Symptoms were 1 sided pounding head pain,ear pain,fullness in ears,face flushing,tingling in right hand,neck pain,brain fog I had on average 23 to 25 pain days a month with some or all symptoms.long story short neurologist played around with doses of nortryptyline and a blood pressure med and after 3 months i was sooo much better,only experiencing menstrual migraine which a triptan and naprosyn worked wonders for. I would see neurologist every 6 months to report on progress. Each time i skipped in and out in 5 minutes after feeling i had my life back! Fast forward to november 12th 2022..while out i got this strange feeling of floating,almost like walking on a boat or i was moving when i wasnt( no spinning) couple of days later migraine started which was expected( hormonal) took my abortive meds..did not work!! Every day since then ive had some or all of these symptoms which nothing will shift. Went to gp..diagnosed vertigo ? Ftom very little observations. Prescribed anti histamines whjch did nothing. Im currently trying and failing to link back in with neurologist. I just canmot believe i am back here..has anybody had experience of preventatives or abortives stopped working for them? And has anybody had this strange on a boat feeling that will not go away? This is new for me so i will be linking back in with neurologist as soon as an appoint becomes available. Thank you for taking the time to read this not so short post

  1. Welcome to the community! - we're glad you found us! Thank you for sharing your journey with us. You're not alone - we get it and are here for you. Let me share some of my insights with you.
    It's not uncommon for our migraine patterns/symptoms to change over time AND for our medications to need adjustments. This seems to be just one of the frustrations living with migraine disease. This has happened quite a bit over the course of my migraine story. Another frustrating thing is that we can have more than one type of migraine and/or headache disorder - most of us do. I'm not sure which triptan you are taking for menstrual migraine, although I can tell you Frova or naratriptan has been shown to be beneficial for this type of migraine. You may want to mention this to your doctor.
    Good to hear you checked in with your doctor, that is one of the first things I suggest when we have new symptoms pop up, making sure everything checks out OK.
    Vertigo can be a symptom of migraine, and there is also a type of migraine called vestibular migraine you can read more about here; This link also has good information when you get a chance to read;
    I'm going to stop now so I don't overwhelm you!! Please let me know what you think and I look forward to hearing from you, Nancy Harris Bonk, Patient Leader/Moderator Team

    1. Hi Nancy
      Thank you for taking the time to read and reply to me. I was taking frova and it worked really well but unfortunatley this has become unavailable in ireland and frovatriptan has been given in place of this,supposedly the same but it doesnt seem to work as well for me. Since i posted i have managed to get an appoint with neurologist next week. Symptoms have been minimal the last 2 days and some parts of the day are completley symptom free😊. Thank you for sending the links as i had been wondering about vestibular migraine but at the same time hoping it may just be a freak bout of vertigo and not migraine related as it is finally slowly disapearing after 5 weeks. Its one of the symptoms that makes me most anxious. Possibly because i have never experienced it. Its nice to know we are not alone even though at the same time we dont want anybody to be going through this if that makes sense.

      1. Hello, hello. Welcome to My name's Cody and I'm part of the team. It's nice to "meet you". I'm happy to hear that you were able to get connected with a neurologist, and that you'll be seeing them soon. Please do keep us in the loop on how that appointment goes if you feel comfortable with that.

        I also hear you when you say that it's nice to be surrounded by others who are going through similar struggles as you. Living with migraine can be very isolating, and it can feel like nobody in the world truly understands what living with the condition is like unless you know someone personally who has it. But even then...there are so many different types of migraine that even if you did know someone who also had migraine, there's no guarantee you'd feel understood by them either. All that said, I'm glad that you're here and posted on the forums. There are lots of people here who can relate to your experience, and you're most definitely not alone.

        I hope to continue seeing you around the forums. Please feel free to reach out if you need anything, such as resources or information on Migraine. I always encourage members to post first, but you can also contact our team members via direct message.

        - Cody (Team Member)

      2. I have had problems with a particular triptan working for a while, and then it stops working. My doctor usually has to switch me to a different triptan every year or so. It's strange, but sometimes I have experienced generic (frovatriptan) medications not working as well as the brand names. Many of us here have to buy generic if it is available and can't get the brand. I am glad to hear your symptoms have eased up a bit. Continue to keep us posted!

        ~ Peggy

    2. Hi Peggy.
      Thank you for replying. I suppose i should feel lucky so that the frova has worked a treat for me for 6 years. And yes i agree the generics are not as good. Is there a particular one you find good. I could suggest at the neurologist on thursday. I have never tried another triptan.
      Kind regards

      1. Hi there! Welcome. It seems like the rest of the gang took good care of you with info. 😀 You are in the right place. Change is normal for so many people here, though it's definitely hard to deal with. I also wonder if menopause could be an influence for you. Something to keep an eye on maybe.

        Did you have your appointment yesterday? How are you feeling? Looking forward to getting to know you better. And don't ever worry about posts being long! This is a space for sharing. Talk soon. -Melissa, team

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