New Daily Persistent Headache Support Group

I've had my headache since July 2nd, 2004 without any major changes since then. Based on the circumstances I still suspect a minor or intermittant CSF leak (cribiform or frontal sinus) but as the story goes...who knows for sure.

Anyways, I've noticed the pain has been worse (2 to a 4 on my scale) in the last two weeks. I've also stared having pain in my arms (worse in left) the last few months. It was worst in the distribution of the superficial radial nerve, but now I've started getting pain in the distribution of the ulnar nerve from my elbow to pinkie/ring-finger fingertips. I can't be certain the symptoms are related, but I've read CSF leaks can cause stretching of the cervical spine leading to radicular arm pain symptoms.

Now the arm pain doens't seem to perfectly follow a dermatome; however, I read a study that intraoperatively varified nerve root compression producing such symptoms.

Has anyone heard of a similar problem or case? When these problems started I was on my parents insurance, but now I'm on a studnent plan and can't really afford extensive treatment-so the less wastefull I can be the better.

-Tim

Hi Tim,

Welcom to the forum. Have you had an LP to check your CSF pressures? How did you determine you have a leak?

Since you've had your headache so long, I'm sure you've tried all the usual tests, meds, therapies. Has anything helped you so far?

The arm pain is a new one to me, I hope you can find a correlation.

I've had two LP and the CSF pressures were within normmal ranges. I didn't rule out a leak though because individual pressures vary quite a bit and what was measured could have been low for me. There was no meningeal enhancement seen on any scans, but again, thats not going to be obvious for a small leak. I don't notice any orthostatic components to my headahce, but those aspects are reported to disappear after having the headache for a prolonged period of time. I know people have varified patients who have CSF leaks, yet no orthostatic component of their headahce due to the length of the headpain.

I think a CSF leak might be a possibility because of how the injury happened and a past accident. When I was three I fell at a State Park and was impaled through my face. The stick pressed up agaisnt my cribiform plate, but there wasn't a detected leak. The headache started when I was lifting weights and more specifically performing a nasty valsalva maneuver. The moment my headahce started I had a severe nosebleed. The elevated bloodpressure/CSF pressure during that moment could have exploited a bony defect or previous injury. I also 'think' I've noticed clear watery drips from my right nostril time to time. I have a tiny collection container so that I could be a sample to be tested from B2-transferrin, but I rarely get the drips and its not much...maybe a mL at the most.

Hey Tim, welcome to the forum. Did your neurologist rule out Intra-cranial Hypertension? Are you pre-med? You seem to a quite a bit about anatomy.

hope you feel better soon,

MJ

Yeah I've had two LPs. I've never showen any papilledema or had any signs on scans. My guess is that there is a small intermittant leak thats gives way every once in a while. Even if its still not rearing its ugly head I wouldn't be suprised if something like that is what iniated this whole process.

If it weren't for the worsening symptoms/potential cause of my upper limb pain I wouldn't be real concerned with this. After the first year of the headahce I'd say I have a pretty strong grip on it all. I should maybe keep looking into the CSF issue because that puts me at like a 10% risk each year for meningitis.

I had the cisternogram, but studies have shown they dont pick up all leaks-especially very small ones. Patients were finding flourscent dye sneaking past the cribiform plate after epidural injection eventhough no fistula was detected via the scan.

And yes I'm a 2nd year medical student currently working for a headache specialist and learning some tricks of the trade. Not to mention you learn alot about the problem when you've had a constant headache for over 5 years-but I'm sure everyone is well aware of that.

Hi Willi2t2, Welcome to the group. I don't remember hearing of pain in the arms along with NDPH, but I have heard of someone mentioning numbness or heaviness in the arms before, though it was a long time ago and I am a bit shaky on the details. It does make me wonder if there is some sort of connection.

Willi2t2, That's great. It will be nice to have someone on here who has an "inside scoop" with the medical field. I'm very impressed you're able to pursue your medical degree despite your headache.

Hey Tim, like drmeows I have to commend you for being able to pursue a medical career despite (or is it because of) your headache condition? You will be a valuable member of the medical community because of the sensitivity that your condition gives you. I look forward to reading your posts and learning from you.

You're problem is vexing. Would your doctor consider prescribing a Carbonic Anhydrase Inhibitors (i.e. Diamox) as a diagnostic alternative to the test you have had? See:

http://www.ihrfoundation.org/intracranial/hypertension/info/ C31/

This is done for Hemicrania Continua when a person complains of symptoms of the disease. Doctors will prescribe Indomethican and expect complete recovery. So, the

medication confirms the suspected diagnosis.

My headache has definately provided me alot of direction-at least as far as what I want to do in the medical field, but I had made the decision to go to medical school before my headache started.

It began over 5 years ago, and I haven't used any medications for about two years now. Not that I'm against them, but I didn't see any great benefits from them and they had side effects. I've never used Neurontin/Topamax together or alone-I guess it would be worth a try, but my mentality is there isn't anything that is going to make the headache better (at least thats how I feel given my history) and every treatment/medication does have a side effect.

There are some treatments I could pursue if this is a leak/intracranial hypotension, but to the best of my knowledge diamox would only rule out intracranial hypertension. Another big hurdle is $$$. My current insurance plan doens't make extensive tests and treatments look to appealing.

I've looked into any great medications for IC hypotension like there are for Hemicrania continua, BP hemicrania, SUNCT that could at the very least verify my suspecion, but there aren't any that I'm aware of. Perhaps a saline or epidural blood patch could transiently raise the fluid pressure and alleviate the pain-but who knows...

Right now I plan on trying to get an MRI with and w/o contrast of the head and without contrast of the neck. It could show some ventricular collapse, dural enhancement (paranchymeningeal), engorgement of the dural venous sinuses, or maybe something else I'm not familiar with. Many of the leaks are in the cervicothoracic junction too so this might become apparent on the scan.

I think one thing this field could use is very thoughtful delivery of healthcare for chronic patients becasue getting every test done can lead to very expensive bills. My history, and probably many of yours, don't indicate a step-wise approach (I want to cut to the chase).

Perhaps you could do a study that would outline a cost and treatment effective approach. According to the Nakano et al in Cephalgia 2004 the authors concluded NDPH is unresponsive to typical headache treatments." From what I've seen there seems to be quite a bit of differentiation in treatment protocols, yet I don't know how successful current treatments are.