My 16 year old son today is his birthday just saw the headache specialist...

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  • I took Famvir the first month. Didn't do anything for me.

  • Did they say how long to take it to see results? I know some meds can take a few to several months to be effective.

  • I also think it is possible my daughters' headache started after a virus. Has anyone else in the UK been treated with antivirals? How do neurologists decide which cases of NDPH may respond to antivirals and which one to use?

  • This is interesting, i had a virus before i got my headache. Keep us updated. And good Luck!!

  • Which neurologists are trying antiviral? Dr Rosen?

  • Dr. Rozen wrote about it. We are in Seattle area and seeing a headache specialist.

  • All the drugs I took in the beginning were 3 month minimums before seeing the doctor again to try something else.

  • thanks. Hoping to start him on it in the next day or two. Rx requires pre authorization. $100 a month otherwise. Eeek

  • Dr. Rozen, didnt work for me but has helped many patients

  • Blood work Amanda, my BW showed presence of Epstein-Barr and CMV. I have been on Famcyclovir since November.

  • I am being treated with antivirals, Famcyclovir, since November 2015. Dr. Rozen, Mayo Clinic, Jacksonville is my doctor. My blood work showed presence of Epstein-Barr virus and CMV.

  • Lacey Warrick, good days, bad day! I did have 10 almost totally pain free days in a row but then I believe I did something in yoga to fire up my neck and the head/face pain, 4 days later I took my last antiviral and the pain increased. Luckily this all coincided with my next appt with Dr. Rozen and we agreed to continue the antiviral regime. It has taken 7 days for me to get back to having pain free episodes each day but I can tell it's all good! I also taken Tizanidine.

  • OMGOSH! I'm so jealous! I'd take 1 pain free day and be happy! Keep us posted, that is fabulous news!❤

  • Lacey, when is your appt., I feel I'm in good hands with Dr. Rozen, he gets it!

  • Lyn Rhinehart how long were you taking it until you started to notice a change? Are you on twice a day?

  • Xxxxxxx Yzzzzzz: Does your son have positive viral antibodies so his neurologist is trying Famcyclovir?

  • Not that we know of. He did not do the blood work. We are just trying to see if it works. He tried the doxycycline and singulair and that seems to have helped a bit.

  • hope it will work for him.

  • What was the dose of doxy?

  • Hi Lyn, My youngest was tested for Epstein-Barr and CMV (both negative). She has also been tested for Lymes (negative). My oldest has not been tested for anything. Are there any other possibilities that you know of? The virus they got was a very bad chest infection that lasted about 2 weeks. It was bad enough to go to the GP and the eldest was given antibiotics for it.

  • Xxxxxxx Yzzzzzz and Lyn Rhinehart, or anyone else who has tried them, I'm wondering if you could post an update re: the effectiveness of antiviral meds on NDPH.

  • My sons started with a virus, he had strep & a sinus infection.

    He was doing really well, at a level where he could tolerate it & he came down with pneumonia. Now it's been back up ever since. And he developed an allergy to amoxicillin. The antibiotics overloaded his system. He's been on antibiotics several times before but now that option is gone. I'm going to research Famvir. Thanks.

  • It was not effective for him. Just hit the two year mark in January. He's in constant pain but it's the fatigue cycles that do him in. Right now he is fatigue free so he's feeling pretty good. Despite the 25/7 pain of 7/10.

  • That's too bad. Do you remember which antiviral he was on and did he take them for very long?

  • Fancyclovir and probably 3 months.