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Living with Migraine

Getting Help

  • By admin

    Welcome to the Getting Help Forum

  • By Anonymous

    My first migraine was 4-5 years ago and was characterized by a “popping” feeling in my head, like a change in pressure, and then an intense, loud, ringing noise in my ears. It was loud enough to prevent me from hearing anything for several minutes at a time. I called someone to take me to the ER because I had never experienced that before and doctors at the ER thought I had a brain aneurysm. I was totally unresponsive, couldn’t walk, the muscles in my arms and hands were in spasms and I couldn’t move them.
    After 9 hours in the ER, they concluded that it was a migraine. Several months after I continued going to the ER for severe symptoms of migraine.
    Eventually the ER visits have slowed down, I haven’t been in several months, but my headaches continue varying from 2-3 all the way up to an 8-9 on a scale of 1-10 for pain and I continue to have 3-4 migraines a week.
    With tracking I have been able to find two triggers; stress and my recent discovery of allergies to all plants in the state i live in, but nothing else, and I’ve been able to identify when I have a migraine coming on, normally a can of coca cola helps stop most symptoms other than aura and dizziness. Some mornings I wake up with severe headaches that effect my balance and ability to walk but they subside within an hour or two.
    Since my migraines started I’ve noticed a steady decline in my motivation about anything. I’m increasingly becoming more apathetic and my memory has definitely been effected with my recurring headaches, but I’m not sure if it’s just because I’m not getting the help I feel I need.
    I’ve spoken to countless doctors here that attempt to write me a 30 day supply for a Schedule III drug like Vicodin, which I don’t want. I need to know how to speak to a physician about the “disruptive-ness” of what’s going on with my headaches and maybe some pointers on what to clarify with a physician to understand that I need help dealing with my migraines.

  • By cmoore09

    I am in a predicament and I need some help. I am prescribed topamax for my migraines (about 4 per week on a good week), and my neurologist retired. Prior to his retirement,he prescribed me a years worth of refills in three month increments (meaning different paper refills) so when I went to refill my rx this week it was expired…not a problem, I had a paper prescription, dated 11/12/2010 but the pen had been dying, so the doctor wrote it in a few times to make the ink show, so the pharmacy won’t fill the rx. I am currently uninsured because of my migraines, and cannot self pay because at 4 migraines/week being employable is not an option. Should I follow my mother’s advice and go to urgent care and get a new prescription and have the indigent care program by the state write me a new script or should I demand the filling pharmacy fill the 2.667 fills I have left or do you guys have an idea? Taking 3 excerin, 4 motrin every 4 hours is getting REALLY tough on my stomach and when I need the pain relief taking 6/8 respectively makes throwing up 2 times annoying. I need a preventative, at least… :[ I hate headaches

  • By Ellen Schnakenberg


    Stopping topiramate cold turkey can result in neurological side effects that can range from bothersome to severe or even life threatening. Can you take the prescription to another pharmacy?

    Perhaps you need to remind the current pharmacy of the risks associated with immediate cessation of this drug as well as your history of purchasing the meds there, and ask them to re-think their decision not to fill it.

    I’m honestly not sure if it is even legal for your doctor to have written pre-dated prescriptions which brings up another potential problem. I’m just not sure.

    Bottom line, you need the meds to continue to be available to you, so do whatever you need to get that accomplished legally, and I hope you can find another doctor soon who will be able to take over where this doctor left off.

  • By Ellen Schnakenberg


    Have you been seen by a headache specialist yet? This is perhaps the best and first place you should go. Obviously we cannot diagnose you online, and a specialist is the one best equipped to do that for you. Another option might be seeking the help of an ENT and asking about Meniere’s Disease.

    Triptans are considered a first line abortive for Migraine. Have you asked your doctor why he chooses not to treat you with this drug which was designed specifically for Migraines? It also sounds like you may be a candidate for preventive therapy. Have you requested that you be started on anything to prevent future attacks?

    I’m very sorry you are not able so far to find the treatment you need to properly manage your Migraines. Sadly, you are not alone. It often takes several doctors to find a good match and someone who is Migraine literate enough to properly diagnose, treat and help you manage your Migraine Disease.

    Here is a link to help you get the most from your doctor’s appointment

    Hang in there and keep trying okay?

  • By AprilB

    Hi I am April and I am here because my fiance, Derek has had a migraine with no relief for over 4 months! Yes you read that right it has not subsided nor has it eased since the Wednesday before the Superbowl. We have seen neurologists and he is currently being “treated” by a headache specialist. Unfortunately she will not do anything for him and I don’t understand whats going on so I am asking for help and advice from ANYONE. The first doctor tried many different drugs with no help which is when they sent Derek to Dr. Kelley. He has had an MRI, MRA, MRV and CT Scans along with multiple blood tests but everything keeps coming back normal. He has now lost his insurance through work and when we applied for medical assistance for him The doctor called the office and told them that because she has not yet found the cause she will not label him with a debilitating condition nor will she say how long it may take to treat. Therefore he is not able to get medical assistance. I tried talking to the doctors office but no one can give me any answers or ideas what to do and the doctor will not return my calls at all so I can’t ever talk to her directly. Every other neurologist I talk to tells me they cant see him without a referral from her as she is currently treating him so even if I could find a way to pay for the appointments he cant get any. I can’t stand watching him suffer anymore and I am at a loss as to what to do so at this point anything would help. Please feel free to reply with any information you have. Thank you for reading this.

  • By Ellen Schnakenberg

    You might want to schedule a consultation with the doctor to discuss his insurance and what the doctor might be able to do to help. Does the doctor understand what’s going on here??

  • By AprilB

    I don’t think she cares but he does have an appointment on Friday so we are going to have to see. I tried to explain everything as clearly as I could and after I did that is when she call the medical assistance office and told them it is not a debilitating condition.

  • By Ellen Schnakenberg

    The unfortunate fact of Migraine is that it is a diagnosis of exclusion. If he has Migraine, she can look until the cows come home but will not find anything. Someday we will have more genetic information and that might be an option, but for now, Migraine means nothing else will be found. Migraine can be disabling as is evidenced by the fact that it is on the government’s list of conditions that can cause complete or partial disability and the need for SSDI payments. Maybe the fact that you know this information will encourage the doctor to be more open with why she did what she did.

    Have you checked yourself to be sure this doctor actually IS a headache specialist? Right now there are a lot of physicians who call themselves specialists, but lack the training etc to actually be listed as one.

  • By AprilB

    I honestly can’t find any information on her. I called another hospital today and they told me I should bring him into their ER so that he can be treated right away and then be referred to their headache center to see a doctor there, they said that is not how they usually handle referrals but with him being this sick for this long it’s really important we not waste any more time so I think thats what we are going to do.

  • By mo

    I’ve been suffering chronic migraines for 20+ years, and my pain doctor is advising implanting the Boston Scientific nerve stimulator product. I’m very nervous about this. Has anyone compiled a list of available products being used? My migraines always start in my right temple; is occipital stimulation the right approach?

  • By Ellen Schnakenberg

    Hi mo – Unfortunately, pain management specialists are not the best people to see re: Migraine. Occipital stims do help some people, but there are significant drawbacks. There has been a record of better outcomes with peri-orbital and occiptal stims working together. As far as specific products, I’m afraid I couldn’t say. Before a stimulator is permanently implanted, you usually are given a trial. If the trial works, the stim may be helpful. If it doesn’t, it is not likely to be successful.

  • By Will

    About 7 years ago (age17) I had a severe concussion after getting hit in the forehead by another player’s knee while playing soccer. I was kept overnight at the hospital and didn’t come around for almost 10 hours.
    I have occasional ocular migraines and also bad headaches that may be migraines.
    My questions is: Could I be experiencing silent migraines, with no pain, that are causing random nausea and could this stem from this concussion? I though it was anxiety, at first, but I could be driving or watching TV, with no stress involved, and feel like I have to throw up. Tests have shown any liver, stomach, etc, issues to not be a problem. No ulcers. This came on about 5 months ago and I though at first I had a stomach virus.
    Has anyone dealt with something similar? I am stumped as to why I feel nauseous at such random times. I am careful with what I eat and don’t drink caffeine or energy drinks, though I did in the past, but not to excess.
    Thanks for any feedback anyone may have.

  • By Nancy Harris Bonk Moderator

    Hi MrJeff.

    That must have been some hit you took to be out for that long!! I have a few things to talk about so hang in there with me, ok?
    First let’s talk about diagnosis.”Ocular” migraine is not a diagnostic term that is recognized by the International Headache Society’s International Classification of Headache Disorders, ICHD-II, 2nd edition. I bring this up because ICHD-II is the gold standard for diagnosing and having the right diagnosis allows you to get the right treatment and learn about your particular migraine or headache disorder. So, it’s important to find out exactly what these “ocular” migraines and “other headaches” are. Here is a bit of information on this topic; In that link I think you will find an interesting example of a women who has many diffiernt visual aura symptoms, gets nausea, vomiting, and had other migraine symptoms,but does not get the headache phase – like you she has acephalgic migraine. I’m not saying that’s what you have, just giving you information that you can share with your doctor;
    One more word about diagnosis, when you get a minute take a look at this information,

    It’s not that the concussion causes the migraines, it can make us more susceptible to them, and they can be harder to treat after a concussion and last longer. What kind of doctor is treating your migraines?

    It’s good to hear you are careful about triggers, but I wonder if you’ve ever kept a migraine journal? This is a daily tracking system, very easy, that can help you identify any triggers and patterns you may have. Take a look at this link for the Migraine Meter when you get a chance or if you don’t like that one there are plenty of apps to choose from; Other things that trigger a migraine are skipping meals, getting dehydrated, changes in the weather, changes in sleeping patterns and more. In this link there is information about triggers;
    I know I’ve given you a ton of information, go over it when you can, and please ask as many questions as you want!

  • By Daily Migraineurs

    I have been suffering from migraine for 20 years. For the past 3 years, the situation was near to out of control – i.e. I have at least 1 attack per day. I really don’t know what else I can do.

    I have tried most of the medications, both preventives (propranolol, amitriptyline , topamax, botox, etc) and pain-relieving medications (Cafergot, Synflex, Vimovo, Imigran). Nerve block procedure (with steroid) which normally useful for migraine patients only work less than 2 weeks for me. I have also trying other alternative way – chinese medication, accupuncture, massage, etc. All of the above have a short term effect.

    I have been forced to change from 1 medicine to another because of over use and of course, that also trigger medication overuse migraine. The worst time this year – I was hospitalized for a week to get rid of any pain-relieving medications. Doctor have no choice but to put me on Methadone injection as I have 3 – 4 times migraine attack a day, with pain score 8 – 9 each attack. The situation was getting better for 2 months.

    Unfortunately my work needs a lot of travel, and air travel made my migraine worse. The situation getting worse after 2 months when I have to start travel again. It begin with 1 attack per day, and after 5 months, it has now become at least twice a day, with a pain score 7 or 8 at least. As the situation is getting worse, it has become a habit for me to go to the emergency ward at night for dynastat injection, which at least give me a few hours headache free.

    1 year ago I started engagement with neurologist, hoping things will get better. But now… I am lost.. seriously. What else can I do?

  • By Ellen Schnakenberg


    I am so sorry you are suffering as so many other patients are here too. I hope you take this as a good sign, that you are not alone.

    There are literally so many preventive medications that it would literally take 25 years to trial them all… used singly. Then to double up on them would take even longer. Most of the time we find that patients who aren’t seeing a Migraine specialist are not being trialed appropriately, and this causes failures that might not otherwise be the case. Here is a link that will help you find Migraine specialists nearest you: Getting yourself to the right doctor might be the first, best thing you could do for yourself to get started.

    The Emergency Department is probably one of the worst places to go if you have Migraine, because they aren’t properly trained in its treatment. They may be able to treat the pain, but without treating the attack, this leaves you with an attack that comes back when the meds wear off. Again, a specialist is most likely to be able to help you.

    A neurologist is not necessarily the best trained physician for a Migraine patient, because they have not received the necessary training that a specialist has had. Here is an interesting article that discusses the differences in the type of doctor you see:

    How Are Migraine Specialists Different?

    Here are some helpful links re: the emergency room and Migraine written by patients and doctors:

    Tips and tricks for a successful Emergency Department visit

    When to See a Doctor for Your Migraine? Or the ER?

    Migraines From an ER Doctor’s Perspective

    An ER Doctor’s Perspective: Strategies for Migraine Relief

    Here is a link that has some helpful advice for air travel and Migraine:

    Migraine Triggers: The Power of Weather

    I hope this is helpful. There are many threads in this forum that might also be super helpful in educating yourself about medications and living with Migraine. One you might be interested in discusses Medication Overuse Headache, which you may need to talk to your doctor about:

    Medication Overuse Headaches aka Rebound: