Really need some support
I am going on 10 years of being a chronic migraine
sufferer.
I just had to go to the hospital yesterday for a migraine that lasted 4 days and was causing serious confusion and dizziness. I feel like I've fallen down a hole and I don't know how to get out. I've grown very depressed because of the constant pain... All I do is sleep and work the minimum amount of hours I can, sometimes leaving earlier or calling off because the migraine is so bad... I just need someone who understands what I'm going through and can offer some comfort and advice. I feel like no one understands or believes me...
Hey MigraineGirl!
You are not alone! I'm a newb here but this place is fantastic. I've suffered with them since puberty (I'm 45 now). Only within the past 5 years have I gotten them under control with the help of a great dr. First have you found a Migraine specialist? Not a GP, not a plain neurologist but a migraine specialist? They are a gift from God. They speak our language. They won't give you two Excedrin and tell you to deal with it. My doc just retired and I feel like I've lost a spouse. There are links on this site to find one.
I'm sure other more experienced folks will come behind me and also offer encouragement. Just know you're not alone. Sometimes to get thru the day if I'm having a bad one, I just have to keep telling myself I'm Wonder Woman and I can do it. It at least makes me smile. Good luck.
Beth
Thank you so much.
It helps so much just to know I'm not alone in this. I have tried to get in with a headache specialist. I had an appt set with Gretchen Tietgen at UT medical center, but when I got there it was a different dr who I couldn't understand. I tried talking to the nurses and telling them that I had an appt with Dr. Tietgen because she was a headache specialist and that I would like to see her but they just kept telling me that's who my appts were scheduled with even though when I got there it was never her. I've never even met her once. I feel like the drs at UT don't really care about my well being. I have an appt with a neurologist now but it's not until December
So glad you found us! Most of the Patient Advocates here at Migraine.com have long-standing chronic migraine, too. So we really do understand what our readers go through. I started getting migraines when I was 5 years old. Been chronic as far back as I can remember (with a few brief periods of episodic). When I turned 30, I started getting cluster headaches on top of all the migraines. The combination of the two has forced me on to disability.
Even with all of that, I have a great specialist whom I adore. Working with him has helped me a lot. I haven't had to go to the ER in over a year thanks to him! It took me a long time to find just the right doctor. For many years I felt alone and believed all the doctors were worthless (many are!). Keep plugging away until you find the right one. If you need some ideas, visit https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/ for a listing of specialists. That should help you get started.
Write back any time you have questions, comments, or just want to say "hello".
Tammy Rome
Patient Advocate & Moderator
