VYEPTI FOR MIGRAINES

Thank you for sharing. I have done four now, without a positive outcome. I will not continue. Take care.

Hello @stlandrypt, welcome to Connect. Thank you for joining the conversation and sharing your experience with Vyepti. May I ask, how have you been managing migraines presently? Have you found a treatment or lifestyle change that has brought relief?

Unfortunately, I have had migraines since age 8. I am now 60. I've tried nearly every medication ever recommended for migraines. I took so many exedrin migraine meds over a number of years that I developed a constriction of my pyloric sphincter (connection of stomach to small intestines). It required surgeons to partially remove part of my stomach and now I can never have NSAIDS again, continue to have migraines, and now get stomach and GI issues such as gastroparesis, constipation, abdominal spasms, bloating, dumping, etc.

Hi there! I sympathize so much with you. I also had my first migraine at the age of 8. It was so bad I remember it to this day (and I’m 77). I was sitting in class with tears streaming down my face - that was the first day of the rest of my life. I too tried every medication in the book, without success. You did not mention trying CGRP antagonists. Perhaps you could read up on this if you haven’t already tried them. They did not work for me. Perhaps one of them would for you! Take care. I wish you relief!

That is next on my list to try - I am at the maximum dosage of topomax 100 mg a day. It does cause brain fog to say the least. It has gotten better over time and I just powered through it because it does work - even though I have had to up the dosage the last year. Part of the reason for my early retirement was the impact of the topomax on my brain - but I also couldn’t keep working with the migraines either so the topomax became the better of the two in the end.

I’m down to 4 big migraines month so hopefully I can stay stable and not have to make the decision for the vyepti soon. November and December are brutal for me - with 6 or more attacks a month that can cover 2-3 days. My doctor made it sound like this was fast acting so if there isn’t immediate relief I can’t see a benefit here for me. Although it may be that the infusion he was considering for fast relief was something by different than the Vyepti.

Sue

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.

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

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

I know exactly what you mean. People find it very difficult to grasp all the pain HC can cause and all the different places it causes it. It can be very localized for some and very broad areas for others. It is baffling for those not experiencing it.
My headache specialist only allowed me to take indomethacin for 3 months as a diagnostic tool. But I do still use it a couple times a year if I take a trip to visit family.
Sorry to hear you continue to have new complications.

I still have some hidden under the sink! shhhhhh