New Daily Persistent Headache Support Group

Hi everyone,

My fiance has been suffering from NDPH since March (was finally diagnosed yesterday).

She started with a headcold in late march and then developed severe pain behind one eye. The next day it turned into a bilateral level 10 headache. She was hospitalized for about 1 week and put on dilaudid to manage the pain. She was released from the hospital but her headache has been essentially the same for 3 months. Fluctuates between level 7 and 10. Never goes below 7. She has a high ANA level

She's been to a ton of specialists- rheumotologist, neurologist, infectous disease specialist, nuero-opthamologist, ENT, etc.

She has tried a lot of medications but none have been very effective. The only one that seems to help get the headache down to a 6 or so is advil taken with valium, but that is obviously not a good long term solution since she could potentially develop rebound headaches from advil and get addicted to valium.

The other medications she has tried include percocet, morphine, torodol, ultram, topomax, amitryptalan, prednisone, medrol dose pack, migranol, and imitrex. She tried topomax for a few days at the 25mg level but had to stop since it was causing increased eye pressure.

I have read about several promosing studies on botox. It seem like the side affects have been minor and rare and it seems to provide at least temporary relief to a large percentage of people with chronic headaches. She is very concerned though about using a treatment that has not been FDA approved for headaches. Has anyone here had any experiences with Botox treatment for NDPH- positive or negative?

Thank you so much to the organizers of this forum. It is extremely comforting to be able to talk to other people with similar experiences.

Many treatments for headaches have not been approved for use in headaches by the FDA. I have not had botox, i don't see why it would be any more dangerous than normal uses of botox, but that would be something to talk to her doctor about. Also, I see she has been on many drugs. Most headache drugs take 1-2 months to start to work. Obviously she could not take the topamax because of the increased eye pressure, but there is also Neurontin (sp?). I'm on nortriptyline, an anti-depressant, and it took 5-6 weeks before I noticed it starting to work. Also, NDPH is very refractory to treatment, so, many things don't work on it at all. I'm not certain where you're located, but if it's near a headache center of some kind, I'd recommend going there, or somewhere that may have experience using Botox for headaches.

I don't know if this helps, but my old neurologist was really into Botox and wanted to try it for my headaches (she even had a 'Botox day' where she would only make appointments for injections and nothing else). Unfortunately, it's very expensive and my insurance would not cover it at the time, so I was never able to try it out. Also, it's not recommended for people with hypermobility - which, as we've discussed on this forum before, seems to be characterstic of those with NDPH - and my neck, which is where she wanted to do most of the injections, is extremely flexible/floppy. So it might not have been the best idea, but I was willing to give it a try! Please keep us updated if you decide to try it out. I;d love to know what happens!

my daughter tried botox this last march and it did not help but the dr. who treats a lot of NDPH said sometimes it works great.

Just hearing the word Botox gives me shivers down my spine! I had 3 rounds of Botox with my 1st headache specialist. I had 40 shots each time: a few across the forehead, a bunch on each side of the head, and then some on the back and down the neck area. Let me tell you, I wasn't quiet during them, that's for sure. From what I can remember (I had the shots during the time I was taking Lyrica, which really shot my memory, and now I'm taking Topamax, which is doing a similar job), I didn't feel very much headache pain for about a day or so after but then it was back to normal. It didn't do anything for me. The reason why I tried it more than 1 time was because my doc said that sometimes if you do it more than once it can build up and then work... who knows...

I tried botox injections last march. I had a total of 22 injections of the botox all over my forhead, temples, head, and neck. It was not successful for me but i do encourage you to try, it wouldn't hurt. My advice really is to try everything you possibly can, who knows if it might work.. well I hope one day she doesn't suffer anymore...

I'm a little late to the game on this reply but I just posted today about valium being the only med that's helped me. Since you mentioned it (valium) I will chime in on Botox.

Ironically, I had already had Botox for my headache before the valium -- there are published articles on this, and I fit the profile of the patient who was helped perfectly.

To the dismay of my ENTs (who did the work, experienced with theraputic Botox v. cosmetic), it didn't work and honestly probably made the pain worse. They really did their homework in terms of where to inject and talked to colleagues around the country so I was in good hands.

And no, I did not at least look better!

But there is a subgroup of headache patients who have benefitted from Botox and trials are underway, so I would keep an open mind about this therapy. The treatment itself was painless although I received many injections at higher doses than for cosmetic treatment.

Jconners, Welcome to the forum, I am sorry to hear that your fiance is suffering so much. It is a bad headache to have, but there is hope that it can improve. I still have a headache, but it is much less severe than it was in the begining. A headache specialist (and it has to be a nice one who is easy to work with) can be a great help.

I have not had any experience with botox, but I have taken a bunch of things that are not approved to treat headaches. It is a little unnerving to be given a medication that at first seems to have nothing to do with a headache, but my neurologist can (and does when I ask) explain why he is trying the particular medication and what the reasoning is for trying it. Since many of the medications for headaches did nothing for me and some of these off label medications are helping I am happy with it but it did take some getting used to. I hope she is able to find something that helps quickly. Mary

Hi Mary. Haven't posted here in a while so I thought I would give an update on my fiance.

She never did try the Botox. Her neurologist was against it for NDPH. Her headaches actually got much worse to the point where they were a constant 9-10 with severe constant pressure.

Then in early July her Neurologist convinced her to give Topamax another try under the suspicion that the previous problems she had were from combining it with other drugs. She slowly worked her way up from 25mg per day to 100mg per day and held there for a few weeks with zero benefit and still a 9-10 constant headache and pressure. She then worked her way up to 150mg and out of nowhere the pressure dropped by 50% and and the headache dropped to a constant 8. After a few weeks at 150 she worked her way up to 200 and the pressure nearly disappeared and headache dropped to a level 5-6. Her side affects have been fairly manageable. The typical topamax short term memory problems, some mild hair loss, and muscle pain, but these seem to only be a problem when she is upping the dosage and fade away when she holds for a few weeks at a dosage.

She is now holding at 200mg topamax and using a 25mg fentanyl patch. She still has a long ways to go but is beginning to see the light at the end of the tunnel. In a few weeks when she she's her doctor she will ask about upping the topamax again. Has anyone here tried taking more than 200mg per day of topamax?

Good she is doing better. I went up to 125 BID. So was at 250. But didn't help for me. My doc said the most cases do respond to this drug. Im 19 and small so it had aweful effects too. I was shaking, nervous (medical sense), and other symptoms. So I had to stop it. I hope she is able to respond. Ive tried many of the ones she tried too but they didn't work. Like prednisone percocet, migranol, imitrex. Dads a doc so after determined not my eyes I went for MRI and straight to neuro rather than other paths. This helped avoid many meds that usually don't work for these headaches. Many here ended up surgeries and other things b4 at a headache specialist who could have avoided alot. Have a good day and hope she is able to function better. Good you listen and trust her. Sometimes this things symptoms sound a little nuts.