My current struggle is communicating the seriousness of my condition to my neurologist. I’ve stated that I have daily headaches. DAILY. Then, there are the bad migraines about twice a month where I can’t get out of bed.
We all have to act like we’re ok sometimes or even most of the time. Am I not getting proper attention because I “act well”? I don’t miss work too often (though my productivity is down), I am not cranky with my friends and family (usually) and I am polite to strangers. Should I stop down playing my pain like the tough girl my dad raised?
I just feel like they don’t get it. I’m living with pain every single day. I need treatments that WORK.
We understand how you feel and it’s difficult to be validated by busy doctors. But we believe you, and you will find lots of support here. Let’s see what I can do to help you out.
Have you by any chance brought along your spouse, partner or family member to your doctors appointments? I hate to say this, but some doctors seem to “get” the seriousness of our pain when we bring a supportive person to our appointments. It’s almost as if the doctor thinks it’s affecting others so it must be serious.
Another thought is to see a true migraine/headache disorder specialist. Neurologists like the doctor you see, may be fine doctors but have a hard time being experts in one area. This is because they treat so many different conditions such as multiple sclerosis, Parkinson’s, stroke, epilepsy and others. Many folks with migraine don’t seem to be aware there are doctors who are specifically board certified headache medicine whereas all neurologists are not. So the bottom line is not all neurologists are specifically trained in headache medicine, and all migraine/headache experts are neurologists. Does that make sense? Let me share an article on what makes these doctor so special and then how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and 1. https://migraine.com/blog/looking-for-a-migraine-specialist/. So, it may be time to seek out the help of one of these experts.
It’s not necessary to “downplay” your pain, however I totally understand this as I was raised the same way. I’ve been told by a number of doctors I am “one tough cookie” – which I think they mean as a compliment, but it gets really old. Because migraine is an invisible illness, it is hard for people to ‘see’ our pain. If people can’t see our pain it’s difficult for them to understand and believe some of us have head pain every single day. If we had a broken leg, people would totally get it because they can actually see, by wearing a case, that there is something wrong. I’ve often said we should develop some kind band we can put around our head declaring we are in pain! We have a number of wonderful articles that will help validate this; https://migraine.com/blog/invisible-illness-invisible-person/ and https://migraine.com/blog/the-pros-and-cons-of-invisibility/ to name a few. If you put ‘invisible illness’ in our search bar on the top right side of our home page, lots of information will come up!
One other thought and I’ll stop so I don’t totally overwhelm you. By any chance do you take something to help relieve your pain on a daily or near daily basis? By doing so we can unintentionally create something called medication overuse headache, moh which was formerly called rebound. Here’s what happens; if we take pain medications (Tylenol, Excedrin, Advil and the like) and/or migraine medications (Imitrex, Maxalt, etc.) whether they are over-the-counter or prescribed by our doctor, more than two to three days a week we can end up in a daily cycle of pain called moh. This cycle of pain is difficult to break and our migraines will be more difficult to treat. I have been down this road and I have to tell you it is unpleasant – getting off the ‘offending’ medication is necessary to end this cycle. Let me share information on this topic with you; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.
I hope I haven’t totally overwhelmed you. Please let me know what you think!
Your empathy and help moved me to tears. Thank you.
I really like your idea of bringing my husband along to an appointment. I haven’t thought of that before. He’s very talkative and likely to chime in and help me out. I need the doctor to understand that after 25 years of pain, I am ready to aggressively kick this things ass. I have a 6 year old to spend time with! If he doesn’t get it, I guess I’ll move on to a different headache specialist.
My current neurologist is an older fellow that wrote papers on headaches and suggested a new ‘type’ called Evolved Migraine. This made me think he would be a great choice. My previous neurologist wasn’t a headache specialist at all, which is why he dismissed me after 18 months.
I’ve heard of the rebound/moh problem. I actually quit all over the counter pain medicine several years ago. I take a blood pressure pill right now (which he recently doubled and isn’t helping). I also take magnesium and coq-10. I’ve tried botox and triptans, neither of which decreased my pain.
Thank you for your words, Nancy. I’m having one of those desperate days, so it’s nice to hear from someone.
I’m in the same boat and would love some advice. I’ve been to 3 neurologists along with family practitioners in the past, and have tried what feels like everything. The only thing that has worked is imitrex, and now I”m taking it so much that I have MOH. I am now seeing a neurologist/migraine specialist. I’ve been there once; he gave me some meds that were similar to ones I had issues with in the past. I had similar issues (zonisamide – severe dizziness, no relief, and possibly even more headaches; previously tried Topamax – couldn’t talk.) He then put me on another med that I’d tried before (propranolol) which seems to help some but I’m still getting headaches almost as much and have had one severe one on it. A friend recommended Neurontin, and I mentioned it (all of these changes are by messages sent online), and the doctor said ok. In some ways that’s good, but it’s also scaring me (and I haven’t seen any success with the Neurontin yet, but I’ve only been on it a week). This doctor has never done any tests, only talked to me in his office and seen an MRI that was over 5 years old, and he’s treating me by basically text messages. My pharmacist is concerned that he’s throwing meds at me and not really treating any problems or searching for actual solutions, just kind of treating symptoms, and I feel the same way. So I asked my PCP to refer me to another specialist, and he did – Johns Hopkins. I just got the message today that they want me to go to a closer doctor, and it turns out it’s the one I’m currently seeing. What do I do now? Maybe I’m the common denominator and I’m not trying hard enough with the 4 doctors I’ve already visited, but it seems like I’m not being cared for well. Am I off my rocker? I feel for you and your issues! I hope we can both find relief! (As for migraines, I have 2-3 a week at least, and horrible ones a few times a year, but they seem to be more frequent. I had 2 long migraines (17 days and 4 days) and ER visits didn’t help. Steroids did. Had headaches since 2nd grade.) Thanks in advance for the advice!