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Chronic severe nocturnal hypnic headaches
Sleep Health | Last Active: Sep 26, 2023 | Replies (239)Comment receiving replies
Good to hear that you have an appointment and that you are feeling hopeful about it, @taterjoy. Sounds like it's been quite a journey. You might be interested in a Connect discussion on tips for meeting a new specialist as you go to Mayo Clinic to meet with a doctor there https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist.
These tips mentioned in that thread in particular may be useful for you:
-Write down your understanding of current problem and list of symptoms. Be specific.
~When did symptoms start
~How are you treating the symptoms
~Does anything make them worse or better.
~What tests have been done for current problem, date, location, results
~Write down your questions related to current problem in order of importance. At end of appointment, look through your list and see if they have been answered.
Have you noticed anything connected to the appearance of your hypnic headaches like the one you had at the BNB last month?
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Thank you so much, Lisa, for the link and for isolating some particular helpful tips. I will prioritize my questions and follow these tips in planning my visit. Yes, there are many patterns that I have associated with the hypnic (and cluster) headaches over the past 14 years. For the recent hypnic headache at the BNB, it occurred after a change in time zone (3 zones) and after a string of 14 days of migraines (which HAD responded daily to oral Frova plus motrin and ondansetron), sometimes multiple daily doses). For some reason, the preventative indomethacin and Lamotrigine fail in some circumstances, including traveling across time zones. Over the years, I have tried various additional preventative methods prior to travel to try to minimize the time zone impact (with my MD/neuro approval). I hope that discussions with the specialist with Mayo will help. My travels are not for vacation, they are for parental care. Otherwise, I would avoid travel! Thanks again for the link, and suggestions--I appreciate it!