Talking to doctors about migraines

[Tap]

DD21 has seen a pediatric neurologist a few times when she was younger. She was diagnosed with migraines when she was 6yo by one and her last visit was when she was about 16yo. 

She is 21 now and her migraines just took a radical new direction for the worse. She has a tele appointment this week with a new adult neuro (headache specialist).  I remember when she was a new patient with her last migraine neuro, they asked a lot of questions she didn't really have answers to. Like "do you have odd smells prior to migraines". That is hard to answer on the fly at an appointment. I am curious, If you have seen a specialist, what kinds of things have you been asked....or felt it was important to communicate to the doctor. 

She usually has migraine with aura, but she recently either had a cluster migraine or an ocular migraine.  She called to tell me she couldn't seen her left hand (basically the lower-left part of her vision was gone). She didn't have a migraine at that time, but within an hour she was in the ER with the worst pain she has ever had before. She has had some kind of headache daily for 6 months. Ebbing anywhere from annoying-but-ignorable, to full blown migraine and everywhere in-between. 

She used to get weekly deep tissue/theraputic massages and chiro adjustments to help with her all over pain (including headaches). Last year, she moved to an area that doesn't bill massage to insurance. So  now we have to pay out of pocket for massage and it will be about $100 per visit, plus $35 for chiro. I will pay that if we need to, but it would be nice to work on other, less expensive and time consuming options as well. She has loved having the freedom from the visits.

Edited August 5, 2020 by Tap

[Hyacinth]

I’m so sorry. That sounds dreadful. 
Questions I remember:

• Have you noticed a pattern? (Time of month, time of day, triggering events or foods, etc.)
• Describe the pain. (Where is it, scale of 1-10 in intensity, is it throbbing or stabbing, etc.) 
• How long does the pain last?
• How do you treat the pain and how well does that work?
• Family history of migraines?
• How have the migraines evolved over the years?

[Bensmom]

I was just at a new neurologist Monday discussing migraines. I have seen a few different neurologists through the years and agree with Hyacinth, they always want to document how often they occur (number of days per month), and the duration of headaches (30 minutes or 3 days). They ask what medication I have taken and how effective it was and want a description of my symptoms.  
 

There is no reason to feel nervous about unexpected questions. Tell her to take her time answering, and just to give the response that best reflects her symptoms. Sometimes it is difficult to describe or sounds awkward to our ears, but they have heard all these things before and have a very good understanding of the many kinds of headaches and their various symptoms. The questions are because they want to offer the best medical treatment to fit her specific needs, not because she is on trial😉

I do recommend jotting down a few notes of the things she wants to tell the doctor.  I always do this now because I cannot tell you how many times I forgot a detail I wanted to mention!
 

Wishing her the best and praying she gets the relief she needs. 

 

I am editing to add, I have not experienced a lot of odd questions myself through the years, but I provide A LOT of detail about what I am experiencing. (Like every detail I can think recall) Maybe they will ask more questions if you don’t provide as much detail to your  headache experience and they have to play detective to figure it out???

Edited August 5, 2020 by Bensmom

[Spryte]

Migraines are such a nightmare.  I’m so sorry she’s dealing with them.  Hopefully the new doc will help.

The questions I recall from the neuro who specialized in migraines and headaches ... similar to the above, with maybe some questions about triggers (foods, behaviors, smells, whatever).  My specific triggers involve not eating, and not getting enough sleep, but if your DD can see any pattern it might help.  

A word of hope:  I tried so many things over the years - my migraines were 4 day affairs, and I had 4 a month.  They would trigger my Trigeminal Neuralgia (excruciatingly painful), and I’d be laid flat.  The specialist neuro got me onto a new preventative med, and wow, the difference it made! Fingers crossed that your DD finds relief, too!

[Tap]

So, the appointment was interesting. The doctor thinks my daughter's everyday headaches are actually migraines too, just not as severe. DD often gets symptoms that go along with her headaches like noise/light/smell sensitivity and nausea. DD considers any headache up to a 5 (out of 10 on pain scale) to be a headache. 6 and up are a migraine.  Going by the criteria the doctor laid out today, dd now estimates she has 6-7 migraines a month...not just one or two she thought she had. DD is so funny. The doctor told her 8 migraines a month is considered chronic migraines, so dd said she only has up to 7. LOL Doctor laughed and basically said, "OK, well I won't diagnose you with Chronic Migraines, but were going to treat you like you do." Ha Ha, tricky doctor. 

Doctor wants her to try Emgality, a once a month injection. DD usually pushes back on meds with doctors, but she is eager to try this one. The effectiveness isn't stellar, but dd just needs some kind of relief for a while. This type of med is relatively new so all the risk factors aren't really known. We are hoping if she can break the migraine cycle, she will be able to go off it fairly soon. We need to get her Naturopath to sign off on it first, but the migraine specialist is working on the PA in the meanwhile. 

One thing that was very nice, is that the doctor was very encouraging that dd does all the right things to prevent and treat her migraines. It was very, very nice for dd to hear. DD has to do so much to treat her POTS that if they wanted to add more things, it would be hard to do. 

Edited August 7, 2020 by Tap

[Junie]

I'm glad you had such a positive appointment!

I have a lot of migraines.  They have eased up in the last year or two, but I had three years of daily migraines. 😞 

[J-rap]

That's great that you have something hopeful to try!  

We're a migraine family.  My dh had chronic migraines for years, and three of our dd's have them occasionally.  A fourth, unfortunately, has had them every day for almost 10 years now, starting at age 16.  For the first five years, we did a lot of medical exploration (even at Mayo, etc.), but nothing seemed to help.  Now, so much more seems to be available (medicine-wise).  I wish she'd go back and see a doctor again!  (She got tired of them at some point and quit.)  I'll be curious to hear if the once/month injection helps your dd.

One thing that lessens the severity of my dd's constant migraine is a lifestyle that is gentle...  Enough sleep, gentle exercise, good eating habits (she's eliminated lots of different foods -- is mostly vegetarian and GF now).  I don't know why her case is so stubborn though.  

Please keep us updated on whether the injection helps.  I agree that sometimes just breaking that migraine cycle is the first step!   

[kbutton]

My body responds to anything it doesn't like with an uptick in migraines, and the presentations/fixes have varied over the years. I hope the meds can help! 

[Katy]

Sounds like she had a great appointment.  And like she should have a headache diary.  Maybe with stress levels, what she eats, barometer readings (you can see them on a weather app), weather forecasts, and even allergen levels marked might help her find some other patterns.  Sometimes you're so used to having a daily headache that you don't realize how frequently you have them.

When she finds out she does have chronic migraines she might have her thyroid tested.  Sometimes if you have a technically normal but slightly low functioning thyroid and get treatment for it headache improves, especially among young women with chronic headaches.