I have only just joined this excellent organisation, simply because when my CH started about 12 years ago there was very little information available, the Doctors and I pretty much mad it up as we went along. After 2 years of trialling different treatments and dosages of the same, we seemed to find a way of limiting the damage of each episode. From there I was getting 3 or 4 a year but again limited in length and severity.
However, the reason I have begun to research the topic again, is that I am currently in an episode of CH similar to that of 12 years ago, in severity and length. I have trialled most of the treatments available over the years, except the GamaCore and possible surgical solutions.
I would really like to know if anyone esle has experienced a simlilar diary of CH episodes, in terms of seemingly having it under control as best as can be, only to then return to square one? In relation to the 2 mentioned treatments I have not tried, I cant seem to find anything conclusive on their success rate, if anyone can help there please? Mind you, personnaly if anything sums up the nature of CH, it is the innability to pin down conclusively the "Catch all symptoms", resulting in a "This is the correct treatment" scenario.
Any guidance would be very mcuh appreciated. Stay Safe and keep your heads down, pardon the pun.
Login to add comments