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    Gilenya and Headache

    Hello all!
    I started Gilenya yesterday and have had a headache yesterday and again today. I didn't see this listed as a common side effect and I was wondering if anyone else had this, if so, was it temporary? Could also be a coincidence...

    Thanks in advance
    "I am a brain, Watson, the rest of me is a mere appendix. Therefore, it is the brain I must consider." Sherlock Holmes

    #2
    Hi Neurorat,

    I have been on G for only a month now. About 2 weeks ago I started getting headaches myself. I was looking for a thread and this was the only one I found so far. Sometimes it takes me a while to read through things.

    Has it gotten any better for yourself?
    Leave the Heat and Stress for the birds!

    Comment


      #3
      I was in the clinical trial for Gilenya - when it was known as Fingolimod. In the 2nd phase of the study, we were given the actual med. It took awhile, like a year, but I developed migraines. The neuro put me on a "drug holiday" for 3 weeks and they stopped. He had me wait another 3 weeks, no migraines. I had never had a migraine in my life before this, they were pretty severe. He took me out of the study. I was kind of sad since I had otherwise done very well with the drug. Since you are both new to the drug, maybe give it some time and see if the headaches subside. I did find that Excedrin Migraine worked well for me, but you use what ever works for you. If they get worse or don't go away, it might be a good idea to let your neuro know. Good Luck!

      Comment


        #4
        KitOP....THANK YOU!
        Leave the Heat and Stress for the birds!

        Comment


          #5
          headache for months

          I was diagnosed this past May after a spinal tap. Not because the spinal tap showed anything, because it didn't. My neuro was sure it was MS even before the spinal tap, but she wanted to do it anyway.

          Since the procedure was done at night a few hours before bedtime, I was lying down for about 10 hours straight. The next morning when I got up to get some more tests done, I was fine for the first hour, and then the mother of all headaches hit me hard! I could barely sit up in the wheelchair, much less stand up! It was the worst headache I had ever had!

          The next day, when my blood test came back positive for something, can't remember what right now, my neuro started me on Gilenya. I tested out fine regarding the heart rate over the first 6 hours, so the next day they sent me home - 12 hours and two plane rides. The headache was still full strength - not fun flying in that condition! For the next few weeks I continued getting recurring headaches, but not nearly to the same degree of intensity as that first one.

          Then back in late July I got it again, only this time it's stuck with me ever since. It's usually not too bad, I can still function. But sometimes it's really bad; every little noise that my ears pick up is just magnified and reverberates through my head.

          When I saw my neuro again in August, she said that she thought it might be caused by trigger points in my upper back, shoulders and neck. I would definitely believe that; it seems like that part of me is always really tensed up, sometimes it's hard to let those muscles to relax.

          Within the next few days I plan on finding an acupuncturist and seeing what he can do for my trigger points. They're definitely there! When my wife massages that area, it definitely feels better for a while. But then the next day - or the next hour! - it feels all tensed up again.

          So, I have no idea if it's due to the Gilenya, because the headaches actually started before my first dose, or if it's due to something else.
          "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

          RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
          Currently following Dr. Jelinek's OMS (Overcoming MS) plan

          Comment


            #6
            I took my 2nd dose of Gilenya and the only thing I am experiencing is a headache. I did sleep 13 hours last night, and I am not sure of that is fatigue or if it was just me being tired.

            I am hoping the headache stops occurring or I will have to plan on taking my dose in the evening so I am not at work with the headache.

            My DH is worried about me taking it at bedtime in case my heart rate drops.

            Comment


              #7
              I am on day 10 on Gilenya and I am still having headaches. For the most part they are handled by Aleve. However, I do at times need to take something stronger when going to bed.

              Comment


                #8
                I've been on Gilenya since Aug 20, 2007 when I entered the TRANSFORMS trial. I already had a history of migraines with aura (visual disturbance where I see sparkly triangles all over the place) so I didn't consider it out of the ordinary when I would have them occasionally.

                Last month, however, I had a dozen of these migraines. The neurologist decided they were brought on by added stress as I was juggling a lot of responsibilities last month.

                Once the stress passes, so did the migraines. (knock on wood) I haven't had one in the last week, thankfully.

                Always talk to your doctor. While I haven't heard of Gilenya causing migraines, it's always good to get checked out to see what's going on.

                There can be lots of other triggers besides the stress. Red wine, aged cheese, chocolate (I'm gettin' hungry just taking about it) as well as bright lights (one of my other triggers), certain smells, lack of sleep and fluctuating hormones.
                Jeri
                Author, www.gilenyaandme.com
                Freelance writer, www.healthline.com
                Co-Founder www.partnersinresearch.org
                Patient-to-Patient education about clinical research from the patient perspective.

                Comment


                  #9
                  HEADACHE

                  THIS IS DAY 5 OF GILENYA AND DAY 5 OF BAD HEADACHE
                  TAKING IBPROFEN DOESN'T SEEM TO HELP.

                  HAD HEADACHE FIRST DOSE AND HEADACHE EVER SINCE
                  AM HOPING IT WILL GET BETTER.

                  IF ANYONE HAS SUGGESTION FOR RELIEVE I WOULD GREATLY APPRECIAT IT THANK YOU

                  Comment


                    #10
                    I was on the tablets for 6 weeks, after using rebif for 2 years until I had another attack, after 2 weeks on the meds I couldn't take the migraines anymore, I went from a happy go lucky girl to a depressed person that couldn't get out of bed due to the pain and having to heavily drug myself with coedine just to stop the pain so I took myself of the meds, I still get daily headaches that I can't shake, but I'm expecting them to go once the meds finally clear my system, I said to my neurologist that I would rather have any ms attack rather than putting up with the bs of these migraines

                    Comment


                      #11
                      I have pretty much had a headache for the past week.

                      Went and saw my primary doc today.. she seems to think it is due to allergies.

                      I hope that is gone soon.

                      Comment


                        #12
                        Have any of you with the headaches checked your blood pressure? I'm on G for 3 weeks and my normally low blood pressure is now in the high side of normal. If I take nuvigil or Ritalin, which is desperately need, it spikes and I get a horrible headache :-(
                        Melissa Goerke
                        [I]DX 7/2/10, Copaxone then Avonex, started Ty 9/13/11, JCV+ ended Ty 9/13, started Gilenya 12/13 Blood Pressure skyrocketed, started Tecifdera 4/5/14 - fatigue beyond bearable and symptoms became worse. Rituximab 8/8/14.....waiting for the miracle. I WANT MY TYSABRI BACK!!!

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                          #13
                          I just looked online for Gilenya's common side effects and they were: headache, diarrhea, cough. Few other ones I have forgotten since I just read them

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