At wits end.

I’ve had “migraines” for around 25 years. I’ve seen lots of neurologists who have never been definite about the diagnosis, have suggested it ‘may’ be my jaw joint or my neck or whatever. And had lots of tests that have been negative. I am at the end (I hope) of a migraine that I’ve had since around mid July. I am due to see yet another neurologist in a few weeks.

Over that 25 years I have tried all of the medications that can be prescribed to either treat or prevent migraine. They either didn’t work or made me so drowsy I couldn’t work. (On one I went to sleep driving my car) This time the pain was so bad I was absolutely frantic. My doctor says it may be trigeminal neuralgia. I hate to sound like Mrs Sad Sack but if I come away from this next appointment with no treatment plan and no diagnosis I just don’t know where to go from there.

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Comments

View Comments (6)
  • Nancy Harris Bonk moderator
    5 years ago

    Hi Jennifer,

    As a long time migraine sufferer, I’m sure you’ve worked on your trigger identification and management. But have you recently tried keeping a detailed migraine journal? Our triggers change over time and keeping a new journal can be helpful in identifying new triggers and patterns. Just a thought….

    Nancy

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Jennifer,

    I’m sorry I didn’t respond to you sooner, my apologies.

    At this point, I would encourage you to seek out the expertise of a ‘true’ migraine specialist rather than a neurologist. Here’s why – a migraine specialist is board certified by the United Council for Neurological Subspecialties, and continues to stay updated on current migraine and headache information. Neurologists may be fine doctors but may have a difficult time being experts in one area because they treat so many different conditions like MS, stroke, epilepsy and others. Migraine specialists are just that, experts who treat one condition all day, every day – migraine and headache disorders. Let me give you some information on how migraine specialists are different; http://migraine.com/blog/how-are-migraine-specialists-different/. If you’re ready to find one you can take a look at this link; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    I know it can feel like you’ve tried everything out there for migraine prevention, but that probably isn’t true. With over 100 different medications used to treat migraine it would take 25 years to go through every one of them at the correct dose and in the right manner. We have information on this here; https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/.

    I hope this helps and would like to hear more from you. Nancy

  • Nancy Harris Bonk moderator
    6 years ago

    Hi chip,

    Thanks for responding. No, I don’t think you sound like a “jerk,” just offering your opinion. Yes, I do understand Jennifer has had migraine for 25 years. The truth of the matter is if we each tried every medication available for migraine CORRECTLY, it would take about 25 years to do so. And by correctly I mean the right dose, tapered up or down until a therapeutic dose is reached, for the correct length of time. I doubt many people with migraine have done so. I know I haven’t.

    Migraine is frustrating, exhausting and just awful. I do understand having suffered with it (and many other chronic conditions) for years. Not many people understand what we go through to find relief and finding the right treatment seems to be a numbers game as you indicated. But in all your searching have you seen a “true” migraine specialist? The doctors who are board certified in headache medicine? These doctors are not just neurologists, rather doctors who understand, care for and treat migraine and headache disorder patients.

    Hang in there, I know you are having a rough time. I’ll be sending positive cyber vibes your way!!

    Nancy

  • chipdooley
    6 years ago

    I’m sorry don’t mean to sound like a jerk. But she said she has had them over 25 years so yes she could of gotten all the different meds because I know I have and I have seen several migraine doctors and every single one of them thinks their shots to the head works better that the last 10 dr that did them and the same conclusion comes out after the shots your in pain for a week or longer. Then the pill thing going through all the combo and 80% do not work, 15% make you sleepy or the side effects are to bad and just adds pain sometimes and the 5% they don’t want to prescribe you because drug addict are die left and right and don’t want to take a chance on you die which is BS because we take for pain not parting.OD among women have gone up 60% over the last 10 years and most are from 3 of 8 meds and they got addicted when hurt and could not get off them doctors prescribe to long for a short injury. I’m sorry had Dr. to day came home with a migraine and I am not feeling to good. Sorry chip PS I live in Nevada where medical marijuana and that is one of the best drugs to help with Nassau, aroas, head pain and work in less than a minute and helps your other meds work. I know a lot of people are against it but really it is safer that most all of the pills i have take and works faster and smoking is not the only way to do it. Helps me eat without getting sick too. Good luck Jennifer I feel your pain and Nancy sorry but people don’t understand when nothing works for you, just because something works for 70% of he people the other 30% get frown a pond and I know you where not doing that but I get it all the time special when I have to switch doctors I have to start from the begging and it sucks Sorry

  • lindabriere
    6 years ago

    The joint issues either TMJ or cervical dystonia can set you up for rolling migraines. I have been blessed with the ability to get botox shots in my jaw and the back of my head in the divots from the occipital nerve clusters which are above my neck to either side . This tamps down the fire caused by the lightening strikes of my nerves and has greatly helped me. Sometimes suggesting things to your Doc helps . God Bless!

  • Jennifer Hanson author
    5 years ago

    Thank you all. I went to see the neurologist, he is apparently he is an expert in migraines/headaches which is why my dr. referred me to him specifically. I can’t take lots of medications like beta blockers because I have asthma as well. He gave me Verapamil, I took it for 7 days and got so sick I contacted my dr and she said to stop it. I have various gastric problems, rheumatoid arthritis and asthma and it’s a bit of a nightmare getting medications to fix one thing that doesn’t make something else worse. Now the option is, I think, a nerve block but probably scans etc before then. I am also looking at pain clinics to see what they can offer. Maybe they can help the migraines a bit but at this point I can;t see what will stop an excrutiating headache that lasts for a couple of weeks. Thank you Nancy, Chip and Linda, I am very pleased to hear that you have each found something that helps a bit. Kind regards, Jennifer

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