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My Chronic Migraines

  • By Jonnyinga

    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.

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  • By Ellen Schnakenberg

    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

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  • By carla-fisher

    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.

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  • By Ellen Schnakenberg

    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

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  • By Mahsa shah

    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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  • By Ellen Schnakenberg

    Shahkar,

    I’m so sorry you’re having these symptoms.

    Of course we can’t diagnose or offer medical advice here, however I am wondering if you are seeing a Migraine and headache specialist, as they are usually the best for diagnosis, treatment and management of these kinds of disorders and disease. When the other doctors can’t figure it out, go to someone who specializes in that kind of thing and see what they can tell you.

    I wonder if your doctors ever discussed a diagnosis called persistent aura without infarct with you? You might want to look this up, do some research and start a discussion with your doctor about it. It may not be your particular problem, but it might start your doctors at least thinking in a more helpful way.

    I hope you’ll let us know how you manage. I know how hard it can be when you don’t present as most other patients do. What a challenge. Hang in there…

    ~Ellen

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  • By Mahsa shah

    Persistent migraine aura was brought to me about by my a friend of mine who’s a 3rd year neuro-resident. She is helping me a quite a lot. My neuro, however was not familiar with it, and she believes what I experience isn’t aura, aura would no last this long. I was wondering if you could tell me if:
    You have met suffers in the pasts with PMA.
    What treatments seem to work best for them.
    Has their treatments been successful?

    I’m going to see a headache specialist as you advised. I am a teacher and I had to stay off work to get better, and I’m getting helpless by day.
    However I had to discontinue topomax as the side affects were unpleasant.
    Thanks again for your help and inside
    Great to know you
    Mahsa

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  • By Mahsa shah

    Also someone mentioned it to me that the patienst with PMA lack the gene that is responsible for vitamin B uptake. The supplement for the treatment is called Methyl Protect. Have you heard of that?

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  • By Ellen Schnakenberg

    Mahsa, The ICHD-II and III both mention persistent aura without infarct – this means without blockage or stroke. Here is a copy/paste of it:

    1.4.2 Persistent aura without infarction

    Description:

    Aura symptoms persisting for 1 week or more without evidence of infarction on neuroimaging.

    Diagnostic criteria:

    Aura fulfilling criterion B

    Occurring in a patient with 1.2 Migraine with aura and typical of previous auras except that one or more aura symptoms persists for ≥1 week

    Neuroimaging shows no evidence of infarction

    Not better accounted for by another ICHD-3 diagnosis.

    Comments:

    Persistent aura symptoms are rare but well documented. They are often bilateral and may last for months or years. The 1-week minimum in criterion B is based on the opinion of experts and should be formally studied.

    Diagnostic work-up must distinguish 1.4.2 Persistent aura without infarction from 1.4.3 Migrainous infarction, and exclude symptomatic aura as a result of cerebral infarction of other causes. Attacks lasting more than 1 hour and less than 1 week and not fulfilling criteria for 1.2.1 Migraine with typical aura are coded 1.5.2 Probable migraine with aura.

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  • By Ellen Schnakenberg

    As to treatments, I don’t know specifically. Aura is a part of Migraine, and aborting the Migraine should abort the aura. I have been dealing with aura that sometimes lasts for days, however only as long as 5 days so far. As such it doesn’t technically fit into the criteria, however is looked at by my specialist as the same. My problem is the inability to use medicines normally used to help this, so we’re trying to get me on a preventive that helps. Right now I’m not driving and having a lot of trouble doing my computer work because I can’t see well enough to type legibly and without a lot of mistakes. *sigh*

    The aura can affect more than visual issues. It is considered a complication of Migraine.

    ~Ellen

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