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My Chronic Migraines

So this is my first time posting about my migraines... I'm not really the sharing type. But it's been about three years now since my chronic migraines started and so far doctors haven't been able to help so hopefully someone on here can. I started with just seeing my PCP who referred me to a neurologist. After that neurologist gave me 6 different medication samples and told me to "try them and see which works best and let me know" I decided I should see a different one. Since then I have seen 5 other neurologists... switching to different ones after they each told me they could do nothing more for me.
I've been out of work on disability because of the migraines being so bad. I used to work at a Clorox plant making Pine-Sol and the noise, lights and smells drove me crazy and constantly vomiting from the pain.
I had a bout with depression and ended up in a mental health hospital. But I'm all better now... mentally at least lol.
I've tried dairy free diets, meat free, caffeine free etc to check for dietary triggers and found nothing to trigger migraines since I have them all the time... also had allergy testing and found nothing.
I've been on countless abortives and preventives... nardil, inderal, relpax, sumavel, imitrex, depakote, topamax, corgard, norvasc, lexapro etc etc. The only medicine that gave me relief and took away the migraines at all was DHE by IV when I was hospitalized due to side effects of topamax. But after I was released they came back almost immediately. I've also had two rounds of BOTOX and occipital nerve blocking injections... neither of which helped at all.
About 8 months ago I started blacking out. After I blacked out and hit my head pretty hard I was taken to the ER and diagnosed with syncope... another problem to deal with lol.
But now I'm seeing another new neurologist in Atlanta at Emory Midtown. I'm now on Lamictal, and just had an MRI and MRV done with and without contrast and I'm waiting on the results from those. I also had a 48 hour EEG done and they found a slowing in my left temporal lobe. And also found that I may have delayed sleep phase syndrome. I'm also waiting to see an ophthalmologist as my neurologist found my left optic nerve to be swollen.

So, that's my story. Sorry it was so long... it's actually the first time I've ever typed it up.

  1. Jonnyinga - First, thank you for taking the time to tell others about your story. Something you've written here may change someone else's life.

    There are a lot of things here we can address, so let's start with a couple...

    I'm concerned about your eye problem. Here are two articles you'll want to read before your appointment so you can have an engaging conversation with your doctors:

    Are Migraineurs at increased risk for eye problems? https://migraine.com/blog/eye-problems-in-migraine-patients/

    Migraine Comorbidities – Idiopathic Intracranial Hypertension https://migraine.com/blog/migraine-comorbidities-idiopathic-intracranial-hypertension/

    I'm also wondering if you've ever considered seeing a Migraine and headache specialist?? As you've noticed, neurologists aren't the best doctors for those with headache disorders, and what you've told us here gives a few clues that it's likely your doctor hasn't kept current with the latest and greatest treatment information on Migraine. Here is a good link that can lead you to a couple places you can look for the closest specialist: https://migraine.com/blog/looking-for-a-migraine-specialist/

    Please take some time and jot down the medicines you have tried as preventives, then do some research on them. This forum https://migraine.com/forums/ is especially helpful for patients like you who have tried several meds and not had success. The key is often in how they were (incorrectly) prescribed. For example, did you know preventives almost always need to bes tarted at very low doses, and those doses raised very slowly over a period of months? That it takes at least 2-4 months on a steady, maximum dosage before a patient can expect to see any positive changes? Your neuro giving you a handful of different meds with instructions to try them and see what works, is a real warning sign that it's very likely they weren't prescribed properly for you in the first place. Topiramate is one that is a classic example of a drug often incorrectly prescribed to patients, often resulting in side effects that are frequently disabling. Here is the link to that particular forum thread that has a ton of awesome information on it for you: https://migraine.com/topic/topamax/

    One other really important thing for chronics like you and I to know, is about MOH: https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/

    I hope these links are helpful for you. Keep in touch and let us know if there is anything else anybody can help with. Your experience is going to ring a bell for someone, I'm just sure of it...

    ~Ellen

    1. I am at my wits end with my episodes. Due to other illnesses and medications my options have gotten scarce. I take medications for
      Bipolar disease
      Mixed connective tissue disease
      Hypothyroidism
      Familiar Essential Tremor
      Osteoporosis
      Plus I have a systolic heart murmur.
      I go through my abortive meds before I am allowed to refill them. I went to Scott and White Diagnostic Clinic where they have a headache specialist and had the 30 some odd injections in my head on October third. I am on my 5th episode since the treatment. I have no idea what I am going to do now. I have had these things for as long as I can remember. I have to travel about 7 hours to get to the clinic. I will take heed to any advice that is rendered.

      1. carla-fisher,

        Botox often takes several cycles to be effective. I know that seems like a very long time, but remember - you didn't get this way overnight, and you will have to take time and lots of strength to get better. Chronic Migraine is a bear, but it IS something you can conquer. You must not give up, okay?

        Here is a link on going from episodic to chronic again: https://migraine.com/blog/will-my-chronic-migraine-ever-becom

        Hang in there hon <3

        ~Ellen

        1. I am a 31 year of woman with history of migraine without aura in childhood and a family history of migraine headaches. My headaches had become less in teen years and adulthood. In May 2013, I was living in China for 10 months when I had a Severe GI and then kidney infection with blood in my stool and urine which was treated with levofloxacin (coincident or not), a week later, I developed tension headaches in the back of my head chronically for one week. The headaches were then localized in different regions of the head and lastly I was complaining of chronic sore temples for a month, that didn't respond to Advil or Tylenol. None of my headaches were accompanied with Aura. In July 2013, I started noticing constant flickering light in her vision 24/7, which has been going on for the past 3 months. These visual disturbance are also accompanied with after images and photosensitivity. My MRI without contract, CT scan, EEG, and ophthalmology report have all been Normal. I have been on Topiramte 100mg ( 25 daily and 75 p.m.). I had to change my medication was i developed bothersome tingling and numbness in the right side of my face. I'm on nortriptyline. I am is currently having a few headaches / months with no improvement in my vision. My constant flickering vision has been a mystery to my neurologist. Any suggestions about why I am having these constant vision problems???
          Any help would be great Ellen

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