New Daily Persistent Headache Support Group

Hi everybody,

I'm new here in this group. Don't know if i do have ndph but i really think so. In my country(holland) they aren't as far as in the US in treatments. Don't even know is NDPH is acknowledged as a real disease. It is also very hard to try and find a proper treatment. They will give amytriptiline firdt..then maybe inderal and if that doesn;t work you'll get the advice: untreatable..try to live with it. COuldn;t believe what i read on this site in terms of available meds and treatments. Damn dutch doctors..

Anyway..my story:

August 1,2009 i woke up with a terrible headache (It did happened after a stressfull period i must admit)

I was on vacation and also had a very bad flue. The flue was gone after 2 weeks but the headache stayed. Then i got betablockers (Propranolol/inderal) and my headaches were gone for 2 months..but again from one day to another they were back until now. Ive tried a lot: Psychiatrist, physical therapy, chiropractor, relaxation therapie, neurologist (who did not took me seriously and said live with it, cant help you.)several dieets, amytriptiline, inderal, topamax(but side effects were to heavy so stopped that after 2 days). The headaches are 24/7 with me and i'm also sensitive to noise and since 2 month's very sensitive to light. Since two weeks it got so much worse i can only lie in bed with my curtains closed and no sounds. Everything i do makes the headache worse. Don;t know what to do any more.

I'm so afraid it will never go away and i have to live this crappy life forever. I'm 19 years old and am at home fore a year now. Can't work or go to school. When i read most of the stories..it sounds that most of you are able to work and stuff? How do you guys cope with it and are there any others wo suffer so bad they can't work or anything. I'm so scared and desperit..but glad i found this site.

Sorry for the bad english..i'm from Holland.

Hi and welcome, It seems that a lot of places are not as current as parts of the U.S. in treating NDPH, you are not the first person to notice that their country doesn't seem to have the recognition of the problem or many treatments available. To be fair, a lot of the doctors here in the U.S. have no idea about it either, but eventually most of us are able to find someone who does know and has a pretty good idea how to treat it. My general practitioner had no idea what I had or what to do with it, but he did know a good neurologist who specialized in headaches which is how I got diagnosed.

I don't know how your medical system works, but if you have the option to keep looking for different doctors I would recommend it, particularly other neurologists who might have more experience with headaches. If you are more restricted than things are tougher and I would try to work with whichever doctor has been the most helpful so far. If any of them is willing you could even send them here to look at what other doctors in other parts of the world have used.

http://www.mdjunction.com/forums/ndph-support-forums/ medicine-treatments/96227-what-has-helped-you-part-2

As far as your headache goes, yes I can relate. Early on in my headache it tended to stay at about an 8 out of 10 on the pain scale (0 means no pain- 10 being the worst pain I had ever had). I was both noise and light sensitive and spent a lot of time in bed with extra blankets over my windows because the curtains did not block enough light.

While I am still more noise and light sensitive than I like things have gotten a lot better for me. I wear a hat and sunglasses pretty much all the time and carry earplugs everywhere, but I have also found medications that help make things a bit better. Mine are topamax and seroquel, but each person seems to have different things that work for them. My neuro tried me on Inderal and it did nothing at all for me, while it did help you for a while. I am still not able to work a normal job, but I can get things done around the house and I have a small business where I make jewelry and my family helps me sell it.

I have had my headache for about 4 years now, and while I wish it would go away completely it is nothing like as bad as it was at the beginning. It really can get better. Mine usually stays around a 4/10 or less these days unless I do something to provoke it (like going somewhere noisy or really bright, or messing up my sleep schedule).

Wow... you really have no idea how relieved i am to hear someone speaking about the same thing. It is like hearing myself talking. It gives me so much hope to here that there can be relieve and that there are so many options to do. Here in holland we do have healthcare wich means that everybody has to pay aproximately 100€/month, but everything is free. So neurologists, doctors, medications, surgery's..you don't have to pay for it. At this point a have a meeting with a second neurologist in about 2 months, there was no possibility of doing that any earlier so until that time i just have to hang in there.

And I have an apointment with the best headacheclinic we have here but thats only in October. And the quality of that headache clinic is probably even worse than a bad headache clinic in the US.

And if in the end nothing seem to work here i will immigrate to the states haha! Well..that is something I always wanted to do..i just seems like a beautiful country to me.

And since 2 days i'm on rivotril...it's an anti-epileptica/anti-migraine/ nerve pain/ muscle relaxer. Actually a benzodiazepine but with some positive side effects apparently. I'll let you know if it has worked for me.

Thanks so much for the information and i'm glad i found this website. Hope you can continue with keeping your headache as minimal as possible.

Are there any others who struggle to function with NPHD?

I got NDPH when I was 14 (though wasn't diagnosed until a couple of years ago), I'm 26 now. I've mostly been unable to finish college or hold a steady job over this entire time, and I am currently still living with my parents. It's very difficult but most people can eventually find some relief and be able to have some sort of life. I only recently have been able to find what works for me, so hang in there.

Anyway, welcome to the group, everyone seems to have gone (or is going) through much of the same stuff you're dealing with, so don't feel like you have to face these issues alone.

Welcome to the group! I do work full time but it is very very tough. I just work through the pain as I don't see another option. With a good doctor you can work through a list of meds to see what helps--nothing wrong with taking 2, 3, or more at a time if you get some relief, as even 20% can be a big change. I wouldn't be surprised if many of the ones that can't work aren't as active on the boards as well. Best wishes.

Hi Daisy and welcome to the group!

I'm in Australia and things aren't as up to date here as the US either. I have found a good neurologist and pain management specialist but it took awhile. As this is a smaller country there is less expertise and less people with the condition, but that doesn't mean there aren't good docs out there, you just need to find them! One thing you can do is find research papers or articles on NDPH or treatments, print them out and take them into your doctor. There are a couple of articles in the links section that can get you started.

I have had my headache for over 3 years and no longer work. I struggled on with work for over a year but I couldn't continue. I'm in a better place now but still have bad days (today is one). My average pain around a 4/10 most days now but it used to be 8-9/10 most of the time. Today it would be an 8/10 but that isn't that common for me now which is good.

I am also light and sound sensitive, as are quite a few others here. I also got sick after an infection and being stressed, so your story is familiar Try not to worry too much as most of us find something that helps eventually (for me it is cymbalta and seroquel) but it often takes awhile to get to that point. It does also get easier to cope over time. There are lots of great ideas for treatments and coping that we discuss here, so have a read and ask any questions you have

Hi Daisy,

I have had my headache for almost 3 years now. I have a constant 24/7 headache. Its located in the very front of my head, above my eyes. It never goes away but sometimes gets worse. I work full-time and soon will be going to graduate school. I got my headache halfway through my college career and still managed to graduate with both of my degrees. Its been really hard, I have a lot of bad days. I've seen 4 different neurologists and headache specialists, been on over 20 prescriptions, and had lots of inpatient treatments and IV medications.

Anyways, I hope you can find help here. If you have any questions please ask!

Daisy, It sounds to me like you are on the right track. While some headache clinics here are really good, we have our share of worthless ones too, that try one or two meds and then tell you it is either psychological, or that nothing can help you, or that it will fix itself if you stop thinking about it (yeah, try not thinking about 8/10 pain!!!).

The med you are currently trying has been helpful for some people (it is in the "what has helped you part 2", under one of its other names). I hope that it will be useful for you as well. I am glad that you are at least still able to try something while you are waiting to see the other neurologist and get into the headache clinic.

Hi Daisy,

My son has had NDPH for 10 years; since he was 13. He has been unable to work at a traditional job or finish his college education. He is an artist and a potter when he is able to go to the studio. He just checked into MHNI at Chelsea this evening. We are hopeful.

He finds that working with his hands and painting give him a creative distraction from the constant pain. A good day is when he is able to do so. I wish for you to find something that will give you some measure of relief. You are not alone.

Thanks for al the replies! It is helpfull to see you are not the only one.

Last week I went to a psychiatrist who wants to put me into a program to deal with constant pain. I really do not like that. I don't want to deal with the pain but get rid of the pain.He said we think that you have a depression ( wich in my opinion is logical if you had to give up your life and live in constant high level pain) that the cause is psychosomatic and you haven't dealt with things from the past. I'm really confused now..do I have some disfunctioning in my body what's causing NPHD or is it really in my head?

And i also noted that getting into an headacheclinic in the US means really stay there for a period of time? Here if you visit a headacheclinic you just have an appointment for half an hour and then your home again with maybe some meds to try.

I'm 9 days on rivotril now..can't say it really does a lot. It does something tough..i can open my eyes again and get outside a little, instead of lying in bed ALL the time. But thats probably because the meds work muscle relaxing and that effect will fade away after a few weeks my docter told me.

But i have to stay hopefull..