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Living with Migraine

My Headache

  • By Pendragon

    Hi,
    I’m new to this forum, but have decided that I needed to find a group of people who had some understanding of what I’m going through. Having read some posts, there are people on here far worse off that me, in fact there are people who’ve had migraines longer than I’ve been alive, and I’m not sure if that helps, or scares me more.
    I’ve had a headache for five years now, constituting a quarter of my life. After numerous blood tests, scans, specialists, and oddballs, I’ve come up with nothing. I even gave up for a few years in there. But then things started to change. I went from plain old headache, which nothing effected. Nothing making it better, or worse, to a light sensitive headache. Then very recently, I became dizzy. To the point of needing a walking stick to cross my house, and even then if it gets really bad, I’m stopping till it passes.
    I decided to join a community like this because I lay in bed for hours trying to get to sleep, and all the while feeling suicidal. But after getting through those initial thoughts, I realized, it’s not that I want to die. I just want the pain and debilitation to stop. And I’m scared of what’s to come. If it can go from a plain headache to this in twelve months, what will the next twelve months bring?

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  • By Nancy Harris Bonk Moderator

    Hi Pendragon,

    I’m so very sorry you are struggling right now. You have found a wonderful place for support and information from people who understand what you are going through, Welcome!!

    I wonder if you’ve been diagnosed with migraine? If not this is one of the first things you want to do, and here’s why. Once we are accurately diagnosed we can get the correct treatment and begin to learn all we can about our particular type of migraine and/or headache. And yes, it’s possible to have more than one type of migraine and/or headache disorder at the same time. The thing about migraine is that it’s a diagnosis of exclusion – this means there are no imaging tests or blood work to confirm (or not) migraine. A diagnosis of migraine is made after your doctor discusses your symptoms, gives you a complete neurological exam and goes over you and your family’s medical history. Let me share information with you on doctors and diagnosis; https://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors.

    It sounds like it is time to see a migraine/headache disorder specialist. These doctors are very different from neurologists in that they have extra board certification in headache medicine – most general neurologists do not. Something to keep in mind is that all neurologists are NOT migraine/headache disorder specialists and not all migraine/headache specialists are neurologists. Actually there only about 420 of these experts, at last count, in the country. That means every neurologists who says they are a ‘headache specialist’ probably isn’t. Here is information on what makes these doctors so special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

    I’m glad to hear you are no longer feeling so desperate, you are not alone. We understand how hard it is to live in pain every day want it stop, just like you. I do have to mention, however that if you are feeling suicidal, PLEASE talk to some one. I’d like to provide you with some information on this so you have it at hand; Suicide Prevention Lifeline – can be found at http://www.suicidepreventionlifeline.org/ or call 1-800-273-TALK (8255) They will connect you with a skilled, trained counselor at a crisis center in your area, anytime 24/7.

    National Hopeline Network: Call 1-800-SUICIDE (1-800-784-2433)
    24- hour suicide prevention and support. Your call is free and confidential.

    Again welcome and please keep us posted!

    Nancy

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  • By Ellen Schnakenberg

    Hi Pendragon,

    It is so easy to let Migraine overwhelm us. Pain makes this even worse. After all, pain has been used for centuries to threaten and gain information that has changed the course of the world. Pain is powerful stuff, and there’s something especially brutal about pain in our head.

    I’ve often been asked if I’ve been suicidal, and I answer that, I’m really not sure how to answer that. The fact is, I’ve never wanted to die. I want to live so badly that I have spent the last 20 years doing almost nothing but seeking a way to live! I have maximized every nuance’ of my life it’s possible to control, just so I can live. But I also know about pain so extreme that you feel the need to escape it. This is different. Maybe think of it this way – does the man being tortured during war feel suicidal when he is being tortured, or is he just needing the pain to stop?

    That said, a severe Migraine can put us in crisis mode. This is something that needs to be dealt with, and I encourage other patients to do that when you’re NOT in that mode at the time. Make a plan. Write it down. Know what you will do when things get so out of control that you see no other way out. Here is a good post about being in Migraine crisis that you might like to read: https://migraine.com/blog/migraine-crisis-help/

    There are so many things coming down the pipeline that are totally new, never before been used on patients, that seem to be working during trials. Literally a handful of new things. Some are just coming out now. The Cefaly, while not effective for everyone, may be helpful and is another tool to put in our toolbox. Transcranial magnetic stimulation (the Spring) is just coming out and has been helping people in Europe for several years. There is a new class of meds utilizing antibody therapy getting ready to hit the scene, and there are more than ten of these in the works! There is even more, and we’ll likely hear about some of this at conference in just a few weeks. As for myself, we’re getting ready to try some extremely unconventional therapies to try to help me, and although this is rather fringe, it may be the next up and coming thing that patients can use to manage their migraines. There is always hope.

    You are young, and this can make things seem even more overwhelming. You are too young to have tried many preventive medicines, and just getting old enough to consider other medicines that have yet to be accepted for pediatrics. This is one reason seeing a specialist is so very important, especially for patients who are not having luck with their current therapies. Did you know it would literally take over 25 years of constant trials to try all the prescription options that are out there? Then there are other therapies and treatments as well as devices. So, you have a long way to go before you run out of options. The trick is finding someone to help you. Here is a great link that can help you find a headache and Migraine specialist nearest you: https://migraine.com/blog/looking-for-a-migraine-specialist/

    Some other things to consider might be keeping a journal, as this can help you discover triggers you didn’t realize you had. The Migraine.com version is here: https://migraine.com/migraine-meter/ It is also one of the first things a good doctor will ask you to keep as it gives him/her much needed information, and having it done ahead of time will just save that much time with them.

    My baby boy was diagnosed with Migraines when he was an infant. He was chronic by age 4. We were able to treat him and improve his life immensely, and Migraines, while still a problem, were greatly increased. He knew his triggers well, and we could tell when he’d eaten something or done something he knew was wrong, because of the following Migraine. He gained control of them, it’s just that he didn’t always WANT to control them! That’s true with many of us.

    I tell patients, you didn’t get this way overnight, and it’s going to take time to get better. To add a little humor I’ll ask “How do you eat an elephant?” Answer? One bite at a time. Meaning, each thing you do to get better, whether it is a success or failure, brings you one tiny bite closer to that elephant being gone. Few patients find a single thing that helps them, but many patients find that several things used in concert are helpful to them. The key, again, is having a good team and the right doctor.

    I do want to ask you, are you taking meds now? If so, can you share with us what they are, and how often you take them? One reason why Migraine patterns can change is when another headache disorder is added called Medication Overuse Headache which actually comes from the treatments we try to use to help ourselves. Here is some information on that for you, just in case: https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/

    Please keep in touch with us and let us know how you’re doing. We’re here to support you, but unfortunately, we can’t do the work for you. That’s the difficult part. Hang in there…

    ~Ellen

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  • By Pendragon

    I’m currently on three different medications (names may vary in the US) but they’re:
    Epilim, 1000mg/day
    Isoptin, 90mg/day (started 2 days ago)
    and Clonazapam 2mg/day

    The Clonazapam is to try and control the dizziness, the other two are a combination that has proven effective in the past (for other people) that my doctor has me on to try and deal with the migraine.

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    • By Pendragon

      Thanks Tammy.
      At this point, I guess my biggest question is: Does anyone know of a headache specialist in NSW, Australia, preferably around Sydney.

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  • By Pendragon

    Hi Nancy, thanks for your reply.
    At this point, nobody I have seen has been able to identify what type of migraine I have. The neurologist (who I believe was a headache specialist) who I saw last kept using the term “somewhere on the migraine spectrum” but could never identify what sort of migraine it was. It has not responded to any form of treatment, at all.
    My problem with finding a migraine/headache specialist is that all the information I can find is US information, and, living in Australia, that would be quite a commute for an appointment.

    Does anyone know where I can find a headache/migraine specialist in Australia? Preferably NSW, Sydney area?

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  • By Ellen Schnakenberg

    I’m sorry, I guess we were writing at the same time, and the list I’ve given you isn’t going to be terribly helpful for you. There are some international docs mentioned though. I do know that there are members from Australia here who have had success and found doctors to help them. Sometimes the hardest part of finding the right doctor, is the search. Have patience. Ask lots of questions and have them written down before your appointment. Here is a post that can help maximize your doctor’s appointment: https://migraine.com/blog/6-tips-for-optimal-results-at-your-doctors-appointment/

    ~Ellen

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