Doxycycline and Singulair for NDPH

It seems like a strange combination of medications to take to attempt to get rid of New Daily Persistent Headache, I know. I’m trying it out  now, at the recommendation of my new neurologist. If  you would like to read up on some of the research that supports this treatment, take a look at Elevation of CSF Tumor Necrosis Factor ± Levels in New Daily Persistent Headache.

I’m warning you, it isn’t crystal clear why this would work  just by reading the research. Well, maybe if you are a doctor it would make sense. The author (Dr. Rozen) explained it all to me at length and I fully understood it in the moment. It was fascinating really, and I wish I could explain it back to you as well. I can’t! If I had on my reporters hat, I would have taken notes. Honestly, as I was sitting there listening, it was all about me.

When I mentioned the magic word cure to my doctor with hopeful eyes, he smiled. He ‘s not using that word. It may not be a cure, and the science behind it may not be black and white or clear as day to someone like me, but there is good reason to give it a shot.

Ok, this is my oversimplified interpretation: Doxycyline is an antibiotic. NDPH is often triggered initially by a virus or an infection  and there is some suspicion that this is more of an immune system issue. So, treating it with Doxy and Singulair targets the inflammation in a different way then other migraine specific medications.

I’m on day 8 of this combo. It takes at least 2 months to know if it is helping or not. So far, I’m annoyed at the nausea (I’m easily annoyed) but my head pain has been under a 5 (on a scale from 1-10) for the past 5 days. I know, I said I wasn’t going to speak of those nasty pain scales this week. But how else can I explain? I haven’t had the need to take the abortive med my doc gave me to try out in 7 days.

I’m happy. I’m encouraged. Of course, it could be the fact that the weather changed that is making my head feel better. It could be that my house is much quieter now that the kids have gone back to school. It could be that I really believe it should work, therefore it is.  It could be a whole host of other things and it has only been a week – not nearly enough time to judge if it is working.

But I am okay. Today, I’m okay. So does it really matter why? I take the good days and I celebrate. It is 9:35 A.M. as I write this. Normally by this time the pain would be settling in for the day.  I’ve noticed over the past week that my pain (what there is of it) has been moving. Now, it always moves, but it usually has a focus point over my left eye and wanders around the rest of my head.  I haven’t had pain over my left eye in days.  That is so cool.

Actually, I was afraid to share all this. Knocking on wood over here! Last time I had a significant break in the pain (an entire two weeks over the winter) it came back as soon as I started telling people. Figures, right? But here I am putting it in writing that I am feeling better.

Some people just don’t learn.


Comments

Doxycycline and Singulair for NDPH — 11 Comments

  1. I do hope this works for you. I have a son with Fragile X Syndrome, a genetic disorder, and closely follow its research and clinical trials etc. Promising results have been shown with the use of an antibiotic that has been around for a while – not as a treatment but a cure! Seems that the drug actually alters a part of the brain structure, growing bits that help pass signals from one brain cell to another!

    • Thank you Sue – I hope this will work for me. That sounds very promising for your son! It is amazing that the drug can actually “grow” what is needed in the brain. I hope they will continue researching and that the cure will be soon!

  2. Hi Amy,

    Did you get any benefit from the doxycycline/singulair combo? What dose of each were you on as I am thinking of trying it also?

    Many thanks

    Wendy

    • Hi Wendy, It did work for me for a while, so I do recommend giving it a try. I eventually stopped taking it because I started getting intense stomach pain. Take a natural supplement like probiotics or acidophilous along with it to protect your digestive system.
      I think I took 100mg of Doxy to start. Good luck and please let me know how it works out!

  3. Thanks for the post. My daughter is at 13 1/2 months of what is thought to be NDPH. We’re being sent to UCSF, but it’s good to have something new to ask about. She’s tried so many things with no effect. The only thing that touches her HA is belladona (homeopathic remedy strength) if it gets particularly throbby. But the intensity came down some when she began taking magnesium and riboflavin regularly.

  4. Definitely ask about this treatment. It is very typical of NDPH to be unresponsive to medication, so you just have to keep trying things until something works (even a little). Good luck and let us know how it goes!

  5. Hi thanks for this information, very helpful. Let me start by saying that my headache stopped by taking doxycycline.
    I have had an unknown daily headache for the past 9 months triggered by a flu/ influenza.
    I have had it before also triggered by flu.
    I have done all the necessary blood tests including MRI, nothing found.
    I took all types of medication for the headache but no result. My doc prescribed Doxycycline and the 9 months headache stopped on the 3rd day. ..,, yes it just vanished. I had to cry for punishing this whole time and spending loads of money on medication and diagnosis which is simply cured with doxycycline.

  6. Thanks for the information I am going to start this combo tonight, I was on Doxycycline and it did take them away for 14 days .. then came back full strong so we’re going to try them together I hope it works I want life back!!! Been almost a year of suffering in pain!

  7. Has anyone more recently had success with the doxycycline? My son has had NDPH for 11 months now and has tried many medications. He recently had sinus surgery but that did not help at all. Thinking about taking him to Dr Rozen and also trying the doxycycline.

    • My 11 year old daughter has had post Infectious NDPH for 9 months and I’m thinking about trying to get her to Dr.Rozen, too. I’d love someone to try her on doxycycline. Cleveland Clinic’s Pediatric pain rehab program really helped her to cope and function, but I’d still love for a cure so she doesn’t have to live this way.
      Keep in touch on this board please and I will, too. Thanks!! Best wishes to you and your son. He’s not alone!!

      • Molly have you had success with the doxy treatment or your daughter. I have a 14 yo son with NPDH following a bout with mono. We’ve tried all the headache meds and nothing works. The Rozen doxy/singulair treatment is interesting. We’re pulling our hair out to get our son relief from the horrible condition. Best wishes.

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