Symdeko Headache

[ethan508]

I am switching from Orkambi to Symdeko because the Orkambi had consistently increased the tight feeling in my breathing despite me picking up increases in my FEV1 and FVC, (FEF25-75 will be 25% lower when I do PFT after taking Orkambi compared with a PFT done prior to my morning Orkambi dose).

Since starting Symdeko my breathing has been less tight, but I've been waking up with a severe headache (5 or the last 7 days). Or more like the severe headache is waking me up, always about an hour before my alarm clock chimes. The pain is centralized in the back of my head (where neck meets skull), but the really debilitating pain radiates up to the top and front of my head. NSAIDS aren't doing much to help it. But as the day progresses I feel small and incremental decreases of the pain. I finally start feeling well towards the end of the day, just in time to go to bed and start over the next morning.

Has anyone else had similar side effects from this drug? Did it get better over time? Did you find any pain management technique or pharmaceutical that worked okay? Or did you end up going back to Orkambi?

 

[kenna2]

I had headaches when I first started Symdeko as well. They went away after about 3 weeks for me. Still on Symdeko and doing well. Hopefully this is just part of the adjustment too.

 

[rtorres25]

Your headache sounds like the one I had when my O2 levels dropped. Do you have a pulse oximeter to check it before you get out of bed? Mine were fine when sitting, but dropped when lying down or active. I was sick at the time.

 

[ethan508]

Your headache sounds like the one I had when my O2 levels dropped. Do you have a pulse oximeter to check it before you get out of bed? Mine were fine when sitting, but dropped when lying down or active. I was sick at the time.

I have checked my O2 twice when waking up early AM. Without headache I was 50 bpm and 98% O2, with headache I was 68 bpm and 97% O2. The increase heart rate is interesting, but isn't out of the family of normal healthy. My last clinic measured at 96% and 60 bpm.

 

[rubyroselee]

I definitely had headaches for a few weeks when starting both Orkambi and Symdeko. They eventually went away. Good luck!