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I have two headache disorders: chronic migraine and Hemicrania Continua. Vyepti was prescribed off label for the HC. I find it helps with my trigeminal nerve pain associated with HC, but needed several infusions before I felt any noticeable relief. Perhaps it was after the 3rd infusion. Due to a change in insurance an infusion was delayed 2 months. I knew for certain then it was helping not only the nerve pain, but the headaches, as well. I have experienced no negative side effects that I am aware of.....well, maybe a little constipation, but not enough to stop the infusions, and added fiber has taken care of it. My headache specialist started me on 300 units and I am still at that dosage.
Replies to "I have two headache disorders: chronic migraine and Hemicrania Continua. Vyepti was prescribed off label for..."
Hi @caosborn ,
Have you seen a true cranial sacral physical therapist. Not just a pt that does CST? My TGN has been under control for the last 10 years thanks to a great practioner. My migraines are not as bad, the triggers for both do not go away, however my TGN does not control my life anymore, it fades after a trigger (mostly, there are just bad days), and I know I can see my CST if I am not recovering. I also take Baclofen daily. As for the migraines, Nurtec, worked wonders while on chemotherapy, after allergy issues. .. I have done PT and CST for the migraines too. Oddly enough, my first migraine occured when I was 8, too.
JFN
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I had hemicrania continua as well and took indomethacin for years. I hope Vyepti works for you as the indomethacin was not good for my liver as it is a very strong NSAID.
The HC evolved after several years only into chronic daily migraines, so similar to what you deal with. They still continue to evolve lately adding in vertigo to keep things interesting! If I wasn’t the one having them I wouldn’t even believe the symptoms.
Sue