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Doing More for Intractable Migraine?

Have a long story but going to try to keep it short. I'm a long time sufferer but was fairly well controlled until last year. My "cycles" have gotten longer and harder to break and they've gotten closer together as well. This cycle has been going on since July 3rd. Right before this one started I had my 2nd round of botox, we did a round of steroids in July and August, nerve blocks, added 300 mg zonegran, then increased to 400 mg last week. We tried Reglan (which makes my heart race and thorazine (which killed my blood pressure). At one point I went to the ER after taking the Frova and Zofran still had me at a 10 and got IV reglan, benedryl, decadron, morphine, and toradol. It helped for less than 24 hours and still didn't get rid of it completely. I fluctuate between a 4-7 typically during the day (with at 1-2 days higher), with the pain and pressure almost always on the right side of my head, mostly behind my eye. The top of my head hurts too but it is usually more of a prickly sort of sensation. But it is non-stop - there is always at least some pressure and pain - and I'm constantly nauseous (lost 15 lb and not that big to start) and suffering from really bad vertigo. I have dysautonomia as well, which makes this more complicated and hard to treat. Mostly this has taken the form of dropping my blood pressure, particularly when standing. And everything I do - reading, computer, watching tv, exercising, evening standing up to go to the bathroom, makes the headache worse. Even with the screens dimmed and sunglasses on. Just trying to research what I should do leaves me sicker. I've been unable to work for almost 2 months and I feel like I'm pulling teeth with my neurologist. They were supposed to do an SPG spenocath, but the procedure didn't work out. I take magnesium, B2, and CoQ10, I've tried feverfew and butterbur (which didn't work out bc I'm allergic to ragweed). I've tried elimination diets. I still exercise even though it hurts. I don't know what do, what to ask for, what to expect. My abortives (Frova and Fioricet) are no longer working, even though I only use them once a week when I absolutely can't take the pain. Is there really nothing else out there for me? I know I can't do DHE because I have Raynauds, but surely there is something else....
Also, I take a beta blocker (nadolol) for tachycardia so serves double purpose and keppra for a movement disorder.

  1. Hi erin.sterling,

    Thank you for sharing your story with us. I'm sorry you are having such a difficult time right now. Let me see what information I can give you to help.

    From your description you appear to be like many of us - complicated. Migraine alone can be hard to treat, but when we add multiple diagnosis to the mix, it can make thing down right miserable. I completely understand this being a complicated patient myself.

    I'm going to discuss the things we can do that can make a difference in our migraine management plan. Sometimes I think we forget to get back to basics, because we are in pain all day!

    One of the best things I did for myself was keep a very detailed migraine diary for a few months. This helped me determine patterns, triggers and what medications worked and didn't work. If you haven't kept one in a while, I would encourage you to do so. Here is information on keeping a migraine diary: has the Migraine Meter you can find here;, but if that doesn't fit your needs, there are many others out there too.

    Speaking of triggers, do you know what any of yours are? When we have intractable migraine, migraine that doesn't respond to medication, lifestyle choices and trigger management may play an important role. Triggers can include everything from certain foods, odors, lights, changes in the barometric pressure, fluctuating hormones, and many others. If we can identify and avoid the triggers we can, we may be able to reduce our migraine frequency. Take a look at this information on triggers when you get a moment;

    You mentioned you only use the abortive Frova and rescue Fioricet once during the week, but I did want to mention something to you. I unknowingly got myself a number of years ago was medication overuse headache or moh. Moh was formerly called rebound and can occur if we take migraine medications (Imitrex, Maxalt, etc) and/or pain medications, whether they are over-the-counter (including Advil, Tylenol, Excedrin etc) or prescription, more than two to three days a week. The thing is if we are in an moh cycle, our attacks will be more difficult to treat and we will end up in a daily cycle of pain that is hard to treat. You can read more about moh here;

    Try not to despair, there are over 100 medications that can be used for migraine prevention. If we add up the combinations that number goes up dramatically. Here is that information;

    I would also encourage you to seek out the expertise of a true migraine expert. Here's the thing neurologists may be fine doctors but have difficult time being experts in one area. This is because they treat so many different conditions like multiple sclerosis, stroke, epilepsy and others. Migraine/headache disorder specialists are just that, experts in one area - migraine and headache - and are board certified in headache medicine whereas all neurologists are not. It's also important to note that all neurologists are NOT migraine/headache disorder specialists even though they may claim to be and all migraine/headache disorder specialists are not neurologists.
    Let me give you some information on how migraine specialists are different; To help you find a migraine specialist, take a look at this;

    Does that help?

    1. Thanks Nancy,
      Been a few days since I could come back and look for a reply. I know rain is a trigger and my period. Take bc pill to only have one every 3 months but it pretty much does what it wants anyway. Can't do anything about rain. Alcohol and artificial sweetener but those have been out of my life for a long time. I tried to find other triggers but haven't been able to find any. I cut various foods to see if I would get better (went gluten, diary, nut, and soy free plus every other food I could find on migraine lists) for almost a month which wasn't hard because I'm so nauseous I don't want food anyway. But nothing changed. I'm keeping a diary with a phone app but it kind of hard to do with a continuous headache, it pretty much looks the same everyday. But I take notes as the pain level changes, what I eat, and when I take medication. I don't take OTC meds. They just don't work. My neuro gave me a few oral Ketorolac to get through last few days but they aren't helping either. We are going to try IV Depakote infusions starting tomorrow for 3 days. So hopefully that will break this cycle.

      I have a long history with migraine. I was once decently controlled on gabapentin but it stopped working. It took us many meds to get there though (that was about 8 years ago). The problem is that my conditions takes many meds out of the running as possibilities. I can't use calcium channel blockers or tricyclics. I'm on a beta blocker and it's one I can't switch because again it's also for my other condition, but it's a long acting one and felt to be a good one for both issues. I've tried oral Depakote and it made my movement disorder worse but I'm hoping the IV to break won't cause major issues. I've been on other anti-seizures, including Topamax, which is why we've been trying the zonegran. I can't do DHE or most of the anti-depressants. I have tried a few of them and they either didn't work or I had really bad side effects. I might try adding Prozac if the Depakote doesn't break it, I think that one might not be contraindicated. At this point I'm going to need it for depression if nothing else.
      Mostly I'm afraid of not breaking it. I've never had a headache go constant for this long before. It's officially been 3 months today. And the pain has barely been less 8 since Thursday despite taking the pain med once or twice a day. When it gets to a 6 it feels like relief. But it's not relief I can work with or really have a real life with, especially since it doesn't stay there for more than a few hours. So it just scares me that I'm not going to be able to do anything else if the Depakote doesn't work. There is only 1 doc that is a possibility for me I think because she knows a little about dysautonomia as well (I know this from that community), but I wouldn't get in to see her until mid Dec and I'm still going to have to jump through some insurance hoops. I might be insane before then. And like I say, I'm not sure if there are really meds left available to me. I do feel slightly neglected by my physician, but I know he has also been consulting with his partner who does have some specialty in headaches (did an additional year of training in it anyway). Current guy has some specialty in headache, he treats migraine and does botox, but he's primarily movement disorder. He also had some working knowledge of my other conditions, which was helpful. I think he's done what he can at this point. I'm just not sure if anyone else can do more considering my limitations with medication. I'm starting to wonder about Cefaly or neurostimulation implant but it's hard to know whether they would be a successful option. But guess for now will see how the week goes.

      1. I should have also mentioned I can't do ACE inhibitors, Alpha 2, or angiotensin drugs. Pretty much anything that affects my blood pressure. My beta blocker is already a delicate balance. Occasionally I do have to take clonidine.'s complicated. My autonomic nervous system is very...unstable. Basically my veins don't constrict when they're told to by my brain. It messes up a lot of things. My arterial pressure is usually really low, but then I can have really high swings and then it can also fluctuate really quickly. My kidneys/bladder have some issues too, so the Alzheimer drug is probably out. I'm not sure about the antihistamine. I might be ok with it or I might not be. I'd probably have to try and find out. Not sure I'd be willing to try Adderall or a drug in that class. I know some people with my condition do ok with it and some don't. I guess if I was desperate enough. Same goes for the muscle relaxer. Do you know if that is long term or short term? Would this be similar to something like Flexeril? I've taken this a couple of times to see if adding would help with headache pain at all. It hasn't. But I haven't taken everyday. Again it would also affect my BP if I did. And it makes me even more tired. I do have myofascial and muscle neck/back pain but this is separate from migraine stuff. The Flexeril can be somewhat helpful when this gets really bad but mostly I keep it under control with myofascial release therapy done a physical therapist once a month. I get nervous about the mix of meds. Especially because my liver enzymes were elevated on last blood work (I' due for repeat) and I'm not really on that many regular ones. 6 and supplements.

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