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Help! I don't know what to do

Hello everyone!!!!

I've posted here before- I'm about to turn 18... I still have my headache from when I was in CHOA. They were very rude to me- did not have a pleasant experience. They want me up and walking, because if I'm not, then I develop a cough. Well- I was up and walking for the first time of that day. The neurologist immediately said my headache wasn't bad, and discharged me.... I am crying as I type this. Anyway, I am in pain that stays at a 3 or 4 when I'm at home, but when I want to go out and do stuff, it radiates up to a 5 or 6. What should be my next step? I've had nerve blocks, (didn't really help this time) and I don't get Botox until January 10th.... If someone cancels, then I am on a waiting list. I can barely sleep because I wake up with it hurting and it hurts to lay down. I have been diagnosed with a HM before. I go to a headache specialist, not a neurologist. I go to an Atlanta, GA migraine specialist. I'm just at my wits end with this migraine, and am ready for it to go away. I've had MRI's and they have all come back normal. My CAT scans have also come back normal on my sinuses. What should I do next? My family and I are at a lost. I do NOT want to go back to CHOA. My infusionist at the doctors office is out until maybe next week. I'm just losing it. Thanks in advance.

Heather

  1. Hi Heather, I'm so sorry you are having a long migraine. Those suck and completely drain you. I don't have HM, so I don't have any specific advice to offer on that. Botox does provide me some better days, so that's something to keep your fingers crossed for.

    You say the pain is worse when you lie down. Have you ever had your spinal fluid pressure checked (CSF pressure)? Like through a lumbar puncture?

    1. Hi Heather,

      I'm so sorry you are having such a difficult time right now, I know how frustrating that is.

      I did want to mention not all doctors are created equal and it may take seeing a few different ones before we find one we
      click with. Below are the doctors in GA who are currently true migraine experts who are board certified in headache medicien which is different than being certified in neurology.

      Dr. Frank R. Berenson, Atlanta GA
      Dr. Eric M. Pearlman, Savannah GA
      Dr. Michael A. Taormina, Statesboro GA

      Here are some other infusion ideas to help break this current migraine cycle you may want to discuss with your doctor;

      https://migraine.com/blog/migraine-treatment-experiences-iv-therapy-intractable-migraine/
      https://migraine.com/migraine-treatment/migraine-medication-relief/
      https://migraine.com/blog/what-is-status-migrainosus/

      I hope this helps, please let us know how you are doing,
      Nancy

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