NDPH

I began this nightmare Nov. 2007. I woke up one day and had an awful headache. I've always had the occassional hungry/stress related HA, but nothing of this magnitude. After several visits to the ER, I finally was able to get an appointment with a neurologist. At my first appt the doctor decided to hospitalize me and try the DHE treatment to break the HA. While hospitalized, I had a lumbar puncture as well as an MRI. After being released from the hospital, I felt even worse. I've tried acupuncture/chiro/biofeedback/ therapy.

I tried several different medications:

Depakote, Zoloft, Reglan, Midrin, Nortriptyline, Vicodin, Fioricet, Valium.

Now I'm currently taking Effexor, which I haven't seen any results.

I'm currently in Nursing School and I'm worried that my grades may begin to suffer because I'm always feeling horrible.

My thoughts are just all over the place, which causes anxiety and depression. I constantly think about anuerysms and death because it doesn't seem natural for a perfectly healthy young woman to suffer from headaches for 7 months.

I find myself not socializing with my friends as I normally would. Because everytime that I go out, I feel nervous and unable to enjoy myself.

If someone could give me some advice, I'd really appreciate it.

It is unnerving to have a condition like this because of course the first thing we all think of is brain tumors and anuerysms since that is what we have actually heard of. I had never heard of a daily headache that wasn't really dangerous until I got this one. Since then I have done a lot of reading about it; what it is, how it is diagnosed, treated, what the prognosis is, different theories about causes (there aren't many yet), what other conditions often occur with it, ect. After all that, I have found that I am pretty conviced that I have been accurately diagnosed (especially after I read a little about anuerysms and tumors). The fact that my MRI came back normal helps a lot too.

Being in school with this headache is certainly difficult. There are a number of students on this forum and at least one professor. They have mentioned in other threads how helpful it has been to them to get accomodations for their headache as a disability. Your school should have an office of disability services (or some similar title) that can help you figure out that process. You will probably need a letter from your neuro listing what accomadations you need. If you need help figuring any of this out, just ask and we can either find it in the past threads or start a new one. I didn't have my headache when I was in school so I didn't pay as much attention to all this as I would have if I had needed it myself.

With the friends thing, I think a lot of our relationships with others have changed as a result of the headache, but it may be important to think through why you are feeling nervous....There are lots of different possible reasons that I can think of, but I have no idea which are actually YOUR reasons so I can't really give any good advice there. I hope you are able to find a way to enjoy being with your friends in spite of the headache. I have found it really important to maintain some social connections (though perhaps not as many as I would have had in college).

Welcome to the group, I hope you find lots of support and good ideas.

I'm also just very nervous that maybe the Dr is overlooking something really serious and I think that's where most of my anxiety and worrying is stemming from. I've lost so much weight that sometimes people don't recognize me. I've relayed all of this imformation to my Dr's and they continue to tell me that I'm perfectly normal. But I don't feel normal and it's frustrating to hear the Dr say "Oh, you'll be fine" and I'm like "lady I don't feel fine, I have so much more to do than to be sitting in a Dr office, if nothing is wrong with me."

I've had 2 MRI's within 4 months apart and both were normal. My neurologist seems like she's becoming frustrated with me, and at this point I don't know what direction to go.

I really hate to sound as if I'm whining, but I'm so very frustrated with these Dr's. I really feel as if they don't know what's wrong and just give me a prescription and send me out the door.

has changed drastically too. I was not able to keep my job after the headache started, and for a while everything was very unstable, but I have sort of figured out a new "normal" now. It is not the same as things were, but it isn't nearly as bad as I was afraid my life would be either.

As far as being sleepy and dizzy, for some people these come along

with the headache itself, but for a lot of us these are medication

side effects. Nearly all the meds in your list that you have tried

have these as common side effects. A lot of them also have appetite changes or nausea and/or vomitting so there may be a reason taht you are dropping weight. I took Cymbalta (an antidepressant) for about a month and I dropped weight very fast because I was kinda queasy all

the time and food just seemed gross.

Edited to keep from repeating everything that I said in the post below. Something weird was happening.

Post edited by: MaryR, at: 07/10/2008 08:05

Anyway I will try to remember the rest of it.

I thought food was gross when I was taking Cymbalta.

It is not uncommon to get anxious or (for some of us) depressed when you have to deal with constant pain. Try to take a step back and look at your case as much from a clinical perspective as you can. If you were a nurse presented with this case, would you doubt that the diagnosis was correct? If the answer is no, then your anxiety is probably directly related to how much pain you are in, not your doctor's competence. If your answer is yes, then you probably want to get a second opinion.

Here is a link with a section on NDPH including the diagnostic criteria which might help with your clinical evaluation. http://www.jaoa.org/cgi/content/full/105/4_suppl/23S

It is very frustrating to have to be a guinea pig to try to find what medication will work on your headache, but that is kind of what I have been doing. My neuro tries things that have worked for someone with NDPH, but most of them didn't help me at all, one even made my headache worse. We did eventually find meds that have helped reduce the pain level though. I hope you are able to find something that helps soon.

Post edited by: MaryR, at: 07/10/2008 08:03