New Daily Persistent Headache Support Group

This is my first support group and not sure how it works. I am hoping someone has another idea to help my 24 year old daughter who has has a continuous NDPH for 19 months. She has been hospitalized twice - first time with DHE (did nothing) followed by depakote which took the pain down to a 1 so we left the hospital staying on sterroids for 6 days. On the 6th day her headache was totally gone but on the 7th day it came back and has never left. She was put on Depakote with physical therapy 8 months later, and pain went down to a 3-4. She stayed here for about6 months with level 2-4 pain and then it came back full force. She was hospitalized in March with Depakote injections which has made no difference. She has been on Topamax (200 mg), Flexeril, Verapamil (200 mg), Depakote, Imatrex shots, Indomethacin, Toradol. She currently takes Lyrica, Ambien CR and uses a sleep maching for sleep apnea, which she has used for years. She is a Traumatic Brain Injury survivor (age 18) which is why she takes Lyrica (itching problem from TBI) and Ambien Cr for sleep problem since accident) but MRI do not show anything that should be relating to her NDPH. I took her to the Cleveland Clinic who say she has a NDPH but has offered no suggestions. We live in St. Louis. She has seen 2 Chiropractors, taken physical therapy, sees a headache specialist at Barnes Hospital, has seen an oriental doctor for Eastern nedicine in Dallas. I would appreciate any help and many thanks!!!!!

It sounds like you are doing everything right and trying everything that you can for your daughter. I've had similar treatments and we've been on a lot of the same drugs. I'm also a bit of a traumatic brain survivor, I had brain surgery over two years ago for a brain tumor that they thought was actually causing my headache, it wasn't. Anyways, the only thing I have to offer is that I'm 23 and have had this for almost 3 years, if your daughter ever needs anyone to talk to, you can message me.

thanks for responding. How can I tell my daughter to reply to you directly - I am new to this forum thing. Is your headache constant?

I have no wonderful answers either, but since the depakote seemed to help at one point (even though it doesn't seem to be working now) I might ask the neuro if there is another med that works similarly that is worth trying (I know Topamax is at least sort of similar, but I suspect there are more meds in that class). It might be a long shot, but at least with antidepressants (which are a different class, I know) switching meds when one looses effectiveness sometimes helps, so it could at least be worth asking about. She could also try the Depakote again at some point just to see if it works, though it is entirely possible that it won't, but sometimes headaches can be unpredictable.

You do seem to be on the right track overall though, having a headache specialist who tries meds from a variety of categories and tries to look at the whole picture (including things like sleep quality, which can have a huge effect on the headache). I hope that your daughter finds something that helps at least take the edge off the pain soon. I know from experience how much of a difference a med that takes the pain down even just a few numbers on the pain scale can make.

To send a private message your daughter (or you) can click the orange link "send a PM" that is on the left under the picture of whoever you want to talk to.

Welcome to the group! What about trying other meds in the anti seizure class besides Depakote and Topamax, since she had good but unlasting results from the Depakote? Was she on the max dose allowed? What about going back on the Depakote and adding a second preventative to it to see if the combo helps? Any chance the head pain could be caused by the Ambien or anything else? If the time line could fit (or maybe even not--there are cases of being fine on a med, and then having trauma, and then the med causes headache or other side effects) and shes been on a med continuously, it is worth asking the doctor about tapering off of it and taking a break.

What about Botox or exploring other specialists like sinus (ENT or allergist), rheumatology, massage, physical therapy, chiro, etc?

My best advice is to work with your daughter's doctor, or a new one if this one is not 100% helpful and caring, and work down a list of preventatives to see if any help. Many people will get better results taking 2, 3, or more preventatives together vs. trying one. Most people will have to switch meds at least every couple years because your body becomes resistant to their help after awhile. Don't give up! There is a lot left to try. There are also other classes of meds like muscle relaxers and other really bizarre stuff (look at the What Helps You thread).

Be patient. Because she responded well to one med, that is a very good sign, even if the relief didn't last. I'm also 24 and would love to PM any time you or your daughter want to chat. I've had my NDPH for 4.5 years. How well is your daughter able to function?

Best wishes and good luck.

HI and welcome to the group. I'm sorry to hear about your daughter's problems. It sounds like you have been doing the right thing in trying out meds. It does take awhile to find the right treatments. It was 2.5 years before I got anything to give me more than a mild response. I tried over 30 meds/treatments in that time. There have been some good suggestions made in some of the posts above and if you look through other threads here you'll find lots of good suggestions. We are all happy to answer any questions you or your daughter may have.

My headache is constant, pain is unremitting and has been since the day it started. You can send me a personal message on here or if she wants to she can find me on facebook (I'm sure she has it), just send me a message either way.

How do you see other threads? I can only figure out how to see responses when I get an email to click on.

How do I get to what helps you thread? I am new to this forum and not sure how to navigate. I only see your response (and thanks) because I received an email link.