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post treatment migraines–HELP
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post treatment migraines–HELP

› Forums › General Melanoma Community › post treatment migraines–HELP

  • Post
    • July 10, 2017 at 5:46 pm
    Jme
    Participant

      Hello All,

      I am posting for my husband who was diagnosed with stage 3C Melanoma- with several excisions and lymph node involvement.  We started a trial -blind of ipi vs nivo in Sept 2015 and completed the infusions in Sept 2016- with little side effects during the treatment.  However- towards the end of the infusions- He started getting what has been referred to as Trigiminal Nerve Pain on the right side of his face-primarily under the eye- which was associated to the 5th cranial nerve.  Scans showed no evidence of blood vessels or tumor pressing on the nerve.  Then came the migranes.  We have been trying to figure trigger relations in regards to the migranes. We haven't been willing to go on epilepsy meds per neurologist.  The migranes seem to be  brought on by stress of any type and perhaps computer related- we have seen opthomologist-changed glasses, contacts, etc but hasnt seemed to have helped. Migrane medicines do not help either. (Relpax)  After research- we have found that there is such a thing as immune related hypophysitis which could cause migranes and occular involvement.  Scans reveal no evidence of pituitary enlargement or change– however- thyroid functions were scattered throughout treatment but I'm guessing wasnt enough to merrit  medicine as melanoma doctor never mentioned.  It wasn't anything that we noticed until we went back and looked at the labwork over the course of treatment.  Thyroid level and bloodwork are within normal range now but migranes are causing significant LIFE CHANGE.  Our melanoma doctor has said that we could TRY a short dose of steroids but I am not sure she is convinced this is treatment related.  Has anyone else had these symptoms during or post  immunotherapy treatment or can anyone offer any feedback.  We HAVE to get answers as to how to get the migranes under control.  I might add that we are in scanning phase of the trial-every 3 months with no evidence of disease. 

      Thanks,

      Jenny

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    • Replies
        • July 10, 2017 at 6:15 pm
        geriakt
        Participant

          Jenny,

          I am on the same trial. I finished chemo last Sept 2016. I believe I got NIVO. I get migranes from bright lights and tv and computer screens. I get what is called an aorora in the eyes like lightning in the center of my eyes. I purchase blue blocking computer glasses and it helps a lot. When I get the migrane I just have to sleep. Other issues I have is lower kidney function and elevated creatinine level, but it seems to be improving. 

          When I first started the chemo I had issues of poor eye focus. Turns out it was dry eye from the chemo. It corrected itself.

          Tom

          • July 10, 2017 at 8:14 pm
          jennunicorn
          Participant

            Doesn't hurt to at least try steroids and see if that helps. Also, I would look into trying Lyrica, Nuerontin, or Pregabalin. If you google those drug names with migraine you'll see a lot of other migraine sufferers trying that route. 

            • July 10, 2017 at 11:43 pm
            Newmanbell
            Participant

              My husband is Stage 3B and after 3 infusions with 10 mg of ipi, he was having horrible headaches, fatigue, etc.  He went the route of seeing many eye doctors and xrays, had an MRI done too.  His pituitary gland is a big enlarged and thyroid numbers are out of whack.  However, the prednisone took away all his aches and pains, including headaches.  He said he has not felt this well in years.  Now we are in the process of weaning him off.  He started on 60 mgs, now down to 40 and decreasing by 5 each week.  It sure helped the headaches though.

              Donna

              • July 11, 2017 at 2:14 am
              Lzypt
              Participant

                I can't comment on how treatment may effect or cause migraine. But, I've been a chronic migraine sufferer for more than 30 years. I have found (for me), that not all Triptans (Relpax, Imitrex, Zolmig, etc) are created equal; nor do they quell all migraines. For years, I have been taking Inderal (a beta-blocker) daily. I also take a low dose of Neurontin daily to help with breakthroughs. I am mostly migraine free, with occasional Relpax usage. I hope it helps, and that your husband is soon migraine free. 

                Amy

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