I’d like to ask a question for anyone out there that may have had a similar situation.
I’ve suffered with CCH for some 10 years now; like many others it took some time for the correct diagnosis but here I am.
I’ve had so many absolutely epic attacks over the years and was eventually put on Verapamil which for me was a miracle drug and changed my life. This is until I reached the maximum dosage after a few years and things started to go sideways more frequently.
So off I went back to see the specialist who told me I could start a trial for some new treatment which I agreed too (we are at the beginning of March 2017 now), I jumped at the opportunity to be honest!
Now, the Dr told me before I start the trial I would have to flush my body of all medication except my oxygen, (promise there is a question coming) I agreed knowing what the consequence of this meant and started to reduce weekly. The headaches became more frequent and vicious as I knew they would but with the hope of something new on the horizon I stuck at it (big picture and all).
Where is this question? Coming honest. Now towards the 3rd week of April my attacks started to weaken (not started the trial yet remember) I was getting 2-3 attacks a day but these were nothing compared to what I’m used to so a gift for me.
I didn’t know what to do, how long would this last? I didn’t even want to tell anyone or talk about it in case I jinxed it! So my question is…about time I hear you shout!
As anyone else had a huge reduction in pain from their attacks over a long period of time like me, what happened next? Did it stay like this or did you return to normal jogging with epic attacks or did they get even weaker or dare I say stop?
Clutching at straws here but I’ve never actually met another sufferer so I thought I’d just throw it out into the forum.
Thanks in advance to anyone who may want to share a similar experience.
Cheers and keep the chins up, Cluster sufferers know how to battle hard!
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