New Daily Persistent Headache Support Group

After reading many of the posts on this forum it sounds like my 16 year old daughter may have ndph also.

I have nearly exhausted all my resources trying to get an answer to her horrible headaches.

I was frustrated at the beginning of this ordeal when I was told that her condition was purely psychological. Took her to psychologist who told us that she is best adjusted teenager they have ever seen.

Just started seeing new neurologist who has prescribed topirimate but am having trouble getting it approved with my insurance. As like jerseymom we too have tried accupuncture but only get 24 hr relief. We have been having 3x week treatments. Anyone else have better results?

I have my daughter on a 504plan with school, but she is missing so many days we may have to go back on home tutoring. Was out for 3 months last year, but wanted to stay in school this year because she missed school so much.

I just feel better that at least there is a name of what this ailment is.

Welcome to the group! Sorry to hear about your daughter's struggle. Glad you have her with a new neuro. What reason does the insurance give about the Topamax? Are they requiring she try something else first or something? It is one of the few which is FDA approved for migraine, but of course this doesn't appear to be migraine. Its also generic now. Shouldn't be an issue. Hmm. Suggest to her to drink lots of water once she starts it, as it can help with some of the side effects. Also, she may want to taper up more slowly than the neuro recommends. It can be a tough med, but is probably one of the more likely ones to help. What else has she tried?

It can unfortunately take a lot of trial and error to find something that helps. Acupuncture is one of the few things I haven't tried. It is a very good sign she gets any sort of relief. Is it 100% for those 24 hours? How long has she done it? Often with treatments like that over time the length of time of relief may extend. Even so, that gives her 3 good days a week? Very nice. I'd suggest physical and massage therapy. That can help rule in/out a muscular component, help with relaxation, etc. Probably not a cure, but could be helpful.

One of the good things about her age is she is probably more likely to beat this thing. How long has she had it? The first year is the time frame for it to be more likely to go away on its own, but I seem to read about teens which will have headache remissions. Has she tried meds to break it such as antibiotics, steroids, DHE, etc? Best wishes.

My insurance company keeps saying that it need preapproval. Doctor sends paperwork and they keep declining it. I actually paid for the whole rx the first go round. Was prescribed 15 mg. New rx is for 25 mg. Still waiting for approval after 2 weeks.

Only other meds tried so far is sumatriptan succinate and alternating tylenol and advil with no success.

as far as the accupuncture goes we have been doing it 3 x week for the last month. Only get 24 hrs relief from it, but total pain free time. Great while it lasts and very dissappointing when it returns. Almost making her depressed. We tried massage therapy and got no relief from that. Hoping that insurance will keep covering. Do not know how long they will cover it.

My daughter has had these headaches since March 2011.

They have to give a reason for declining it. If all they ask for is pre-approval and the doctor filled out the correct paperwork, you should be good to go. Sometimes insurance companies are dumb though! You need to start the appeal process. I'd shop around for a good cash price on the generic. Costco is typically lowest, but to save the trip (even though you don't need the card), ask your pharmacy to match their price. Most pharmacies price match. They just won't offer that unless you ask lol.

Shouldn't be too bad, and maybe they would reimburse you later? Probably not. Make sure you look into any tax benefits for next year such as a flex spending account or health savings account. Probably tough to estimate expenses this first year. I can't believe she's had this since March and no preventatives were tried until now. They can take a few months to try, but that is ridiculous. I would ask about something to break it such as antibiotics, steroids, or DHE.

Its common for Triptans and analgesics to not help this headache. For some, even narcotics don't help. The insurance likely has a yearly visit limit on the acupuncture. You need to find this out and keep track of it as otherwise they won't tell you until the claim is denied when you have reached your limit. A common yearly limit is between 15 and 30 visits. That is really great she gets 3/7 days pain free! That is quite unheard of and is a good sign. What does the acupuncture therapist think? Have they tried to vary the type of treatment to check if something could help more? Best wishes.

That stinks that you have to get pre-approval for topamax. Is there any way to switch insurance plans (I know for most people this just isn't possible, but sometimes if both parents work they have the choice of Mom's or Dad's...if it is this hard to get meds on on, maybe the other's would be better), if that won't work and topiramate (generic topamax) isn't on their formulary, you may want to take the whole formulary to the neuro next time you go see him, so he can choose from the meds that she can get at a reasonable cost.

Ideally the doctor's office and insurance will be able to figure out what is needed and she will be able to actually give the topamax a real try, but so far her dose is really low (as it should be, increasing the dose slowly reduces the risk and severity of side effects) and there are going to have to be a lot more dose adjustments....and the insurance company might be difficult at every single one of them. If they make it too hard and you can't afford to pay the whole thing out of pocket she may have to switch to something different. There are lots of meds out there that can help so even if the topamax is not available to her for now she may still find relief with something else. I hope that the insurance and the doctor's office can get it figured out though....clearly they think something is wrong with the papers he is sending, but he isn't getting enough feedback to correct them and do it right so that it will "pass".

I am glad to hear that she is getting so much relief from the acupuncture. I know that having pain free periods and then having the headache come back can mess with your emotions (not that I have done it often, I have only had 3 such times in 5 years and none of mine were longer than 15 minutes, but I was planning my return to the workforce anyway), but it is a really good sign that her brain is capable of turning off the pain signal, and to be able to do it for so long (not that it will feel long to her...It probably feels terribly short to her, but it is long compared to 15 minutes).

If it is really predictable, she may be able to make the most of time after acupuncture by planning to do things that she loves (having friends over, doing activities that she can't do when the headache is there, pursuing hobbies ect) during her pain free window. She may already be doing that, but if not it might at least give her something satisfying to think about when the pain starts to come back. I have medicine that reduces my pain significantly (though it doesn't completely knock it out) and I tend to try to pack in as much living like my normal self as I can while I have that window of time.

Thank you for all of the positive feed back from this site! Great to know that we are not in this boat by ourselves.

I have a question that I hope someone might know the answer to. It is possible to still get your driver's license with this? My daughter has her learners permit but I have not let her drive very often since this all started since I am afraid that she may pass out while behind the wheel. Since we are able to get "good" periods thought that maybe we can focus on this. She is scheduled for her driving test in March. Don't want to cancel if we do not have to. Good thing her permit is good for 2 years.

I'm also afraid that once we get started on the meds that it might make it more difficult for driving also.

So far no doctor has told me not to drive. I don't drive much (pretty much at all unless I am having a fantastically good day) because I am so light sensitive that it is almost impossible to focus if I turn toward a bright light or if someone flashes headlights in my eyes.

A lot depends on her specific medical history. If she has a history of passing out suddenly she may very well not be allowed to drive (that could get very dangerous very fast. If that is not a problem for her she may very well be able to drive just like anyone else (though I would be slower with the learning process just because she has a constant distraction that she has to learn to ignore).

It is probably something to ask her doctor. There is also the consideration of what meds she is taking at any given time that have to be weighed (again the doctor may be able to give some idea of which meds are more likely to make driving dangerous, at least while she adjusts to them). I take several that have warnings about not operating heavy machinery until you know how it will affect you. I take all of mine at night and I would NEVER EVER want to drive after I take those pills, even though I have mostly gotten used to them. They just make me a little too sleepy to be sure I would be safe even if the headache itself was not a problem.

Sometimes it is nice to have a liscense even if you don't use it much. I would hate for her to not get it if there is nothing that completely prevents it, especially if she is later able to find ways to reduce the headache and be more able to pick up normal teenage life.

Post edited by: MaryR, at: 12/12/2011 05:03 PM

Hi and welcome to the group, I'm sorry to hear about your daughter. At least knowing there is a specific condition she has and there are other people out there with it can be helpful. You will find lots of suggestions of treatments in threads on here so they can be good to talk to your doctor about if you need new ideas.

Re the topamax, that is a very low dose and don't expect a dose that low to have much effect. I assume the doctors want your daughter to titrate up her dose over time. The side effects with topamax can be brutal so it's good to go up slowly but a therapeutic dose is usually about 150mg/day but it can be less or more. I was on 300mg/day for awhile. It is one of those meds that can take a long time to work too so don't expect quick results for your daughter.

Re driving, I have my licence and find driving ok most of the time. When I'm having a really bad pain day I try to avoid it and lights, rain and driving at night make the pain worse so I try to avoid situations like that and only drive for shortish periods. It's certainly ok though most of the time. When starting new meds I avoid driving if they make me at all dizzy or not able to concentrate. you just have make your daughter aware that she needs to judge her ability to drive before she decides to go out on her own.

How bad is the Topamax generic price? I looked it up online and it looked like under $50 depending on the dose. No idea why its a big deal to the insurance. Are you sure the doctor didn't write brand name required and the insurance only covers generic?

Agree driving shouldn't be a problem if she hasn't had symptoms such as loss of consciousness, trouble with vision, etc, and isn't on meds that cause problems (or is starting a new med or tapering up on one that might be unpredictable). If you think her attention just isn't there, I could see delaying it, but that could be really tough on her. I haven't had a single med that affected me so that I felt uncomfortable driving, even narcotics actually (except nighttime meds lol). I'd just ask her to report any side effect to you so you can inform her doctor if needed (and decide if its ok to drive). Best wishes.

Be careful with topamax (akadopamax.) It can cause dopiness along with a basket of other side effects and not help headaches. I hope your daughter is one of the lucky ones with it and I hope her neurologist explained all the possible side effects. If not google it.