New Daily Persistent Headache Support Group

I've seen a few different neurologists went through the neuropathic pain drug algorithm. Nothing helps, so I just live with it, and do so poorly.

I've had numerous MRI studies done all of them showing gliosis/glioma in my posterior left frontal lobe along with evidence of a hemorrhage in my right basal ganglia.

Yet, 4 out of 5 neurologists tell me I do not have a headache...

Went to Barrow... (something I wouldn't suggest to anyone) was treated like a second class citizen and told I was lying. By a creepy attending neurologist who sat on my bed. (Really, don't sit on a grown man's bed. It's creepy and disturbing)

Need a neurologist in Phoenix who isn't a judgmental ass and not affiliated with Barrow at all.

Hi and welcome, Have any of the neurologists happened to be a headache specialist? For a lot of us regular neuros (even highly reputed ones) just aren't helpful...especially when they tell you that you aren't in pain. Their tests can't show whether you are or aren't (wish they could, maybe it would get their attention and they would quit saying stupid things like that) they mostly just show brain structure.

I don't really understand exactly what the MRI results mean, since all the neuros seem to agree that it isn't causing your headache then I guess it isn't, but it doesn't in any way mean you don't have a headache. I have had a headache for six years and my MRI is clean. It doesn't mean the pain signals aren't firing, just that the structure is all normal.

I hadn't heard of the neuropathic pain drug algorithm either, so I looked that up too. I am not really surprised that nothing on that list has done much for you. Finding meds that help with chronic headache takes some trial and error. Sometimes antidepressants help (they are frequently seen around here), and while there is nothing wrong with lyrica and neurontin (we try those too) there are other options for headache that it is weird that the doctors are overlooking (Topamax anyone?). There are also other whole classes of medication that may have things that can help with headache that are not being tried here.

We have a whole thread about meds that have helped someone here http://www.mdjunction.com/forums/ndph-support-forums/ medicine-treatments/96227-what-has-helped-you-part-2

You will need a doctor that is actually willing to work with you though to start exploring options and get somewhere with that though. Many of us found that when we found a headache specialist. They are usually neurologists who only treat headache patients so they know A LOT about headaches and have seen and treated difficult cases like us before.

I wish I could help with someone specific, but I am not anywhere close to Phoenix.

I've yet to see a headache specialist. They don't exactly advertise that in the yellow pages (who uses a phone book anymore, anyways)

Unintentional overdose on antidepressants... 100mg of Elavil 3 times a day will do that. Woke up in ICU damn near dead.

Neurontin- up to 3000mg a day, nothing but grapefruit sized swelling of ankles and wrists.

Topomax- too much stress on my kidneys (history of kidney stones)

Lamictal- started weird rash on soles of my feet, discontinued immediately (still have rash though)

Voltaren (along with other NSAIDs)- More kidney problems

All benzodiazpines- adverse psychological reaction (Capt. A-hole reporting for duty)

All opiates- more adverse psychological reactions (being incredibly terrified all the time is no relief from a headache, also bradycardia)

Beta blockers- no help, causes ED

Medical Marijuana- Yay, Im stoned with a headache.

Depakote- More rashes

SSRI- Made headache worse (if that was possible)

Atypical Antidepressants (wellbutrin)- caused seizures and homicidal thoughts (uncool, really)

Amphetamines- seriously, speed is the last thing I need. (See Benzodiazpines- Capt. A-hole times 10)

Vitamin and herbal stuff- Tried all kinds of stuff nothing works.

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In conclusion-

I can totally get why prehistoric man carved holes into their skulls with stone tools to let the demons out... (Hey, Ive got a cordless drill, LOL)

Welcome to the group! Sorry you are struggling so much. What about physical and massage therapy? Its ridiculous for a doctor to tell you that you don't have a headache. Its one thing to say that they can't find the cause of it (true for most of us) or what they found isn't the cause of it, but thats ridiculous. You definitely need to see a doctor whoa actually enjoys treating headache patients. Yes you are correct that only some headache specialists will have a clinic name such as X Headache Clinic, but often some of the associations for chronic headache (such as those for migraine) will provide doctor lists.

Even a Google Search for headache specialist Phoenix could help. I went to a clinic in Pheonix awhile back but I just looked them up again and it looks like they have changed and don't specialize in headache anymore. Bummer. They weren't all that helpful anyways (for example they missed that I had NDPH and called it CDH). If you can't find anywhere else, you might want to get on the waiting list for the Mayo clinic there. There is always more treatments to try, but often they will be quite similar to what you have tried, more risky such that its hard to get them prescribed, or something that you won't want to take as others in the class produced a bad reaction.

I have found some treatments that have helped me, as well as some lifestyle changes, but what also helped was to accept that this will be a part of my life until something changes. Sure I still look for a treatment and hope for a cure, but I try to keep a positive attitude such that I can live a happy and fulfilling life even with this pain. I'd try some of the headache specialist lists on the national migraine association, american headache association, etc. Hope you find someone helpful.

I sure have had a tough time finding anyone that has new ideas for me. My last neuro was great in terms of understanding NDPH, but he understood it such to the point he didn't think too many treatments were worthwhile. Another option is to see a pain specialist. Ones that have a multidimensional approach will often try similar meds to a neuro, injections (Botox, nerve blocks, trigger point, etc), and alternative treatments like a referral for physical and massage therapy. I'm doing this currently (although my main reason for seeing one is that I am on pain meds for my headache). Best wishes.

To respond to the first repsonse....

The first two symptoms of glioma/gliosis is headache and seizures- I do get a minor albeit unsettling break from the headache after a seizure. It's putting the pieces of my mind back together after the seizure that sucks. (whoa dude, who am I? Where am I? Et cetera)

Why is it that they put glioma in the textbooks with those symptoms but NOT ONE NEUROLOGIST knows it?

Oh yeah thats right- doctors are really just pharmocrats... If they can't prescribe a pill for it, it doesnt exist.

In conclusion-

Don't mind me; ive only had this headache since 2007...

Hang in there. I have had migraines for over 42 years. The longest one I have had was 18 months without relief but it broke for 1 day and then started right back up so it wasn't much relief.

What all have you tried besides meds?