I saw my neuro for adult epilepsy on June 10 and spoke very briefly to her about my headaches. She asked just a few questions and - wow - I'm being put in the hospital's headache clinic. That's a big deal. You don't get in because you want in or ask .... it's sort of "Invitation Only".
I'm still waiting for the call but I know it will come.

Wow, Wren! I have never heard of a headache clinic, but I hope they can help you.

(You haven't been flying into any really shiny clean windows lately, have you?)

LOL LOL LOL

Twink -- Frequently the left side of my head feels like it's been smashed into a shiny brick wall . The neuro prescribes Relpax -- the usual triptan and it works but I get only 6 tablets a month and I'm back to the brick wall.

I've never heard of a headache clinic either - Will you share with us when you are done?

All the best

Crwstar

Hi Crwstar When I finally hear from that place - you'll hear from me - lol.
But I do know it's a slow moving place.
When my local neuro found the ~shudder~ tumor in my brain he sent the MRI and all my records to that hospital and said I would hear from them and be having surgery within a day or two. I sat by the phone in absolute terror --- day after day after day -- for weeks.
Finally I had my first appointment and the neurosurgeon I saw said, "Your records show that you have epilepsy. You will be see by so-and-so neurosurgeon. His office will call you." I waited more weeks.
But everything that's happened has been worth it.

Waiting is the worst part, isn't it? Why do they make people wait for sooooh long?

No more brick walls, missy! Hope to read some good news very soon about your poor wittle feathered head (I did NOT say bird brain!!!)

I have been to the headache clinic at the Cleveland Clinic. They tried to help with my problem (Headache caused by CSF leak) but they could not find the leak. After trying several things they gave up. Maybe they have better luck with things like migraines.

[QUOTE=blaba;664582]I have been to the headache clinic at the Cleveland Clinic. They tried to help with my problem (Headache caused by CSF leak) but they could not find the leak. After trying several things they gave up. Maybe they have better luck with things like migraines.[/QUOTE


WOW! I am really surprised they did that...........didn't they send u to one of the neurosurgeons? I have never heard of them giving up there. I go there. They have been a life saver! After treating at the University of Pittsburgh Medical Center Headache Center 4 2 years I was getting sicker...........I went to CC and my headache doc said a bunch of meds the doc in pitt had put me on were CAUSING headache when she said they were supposed to be helping. I have pseudotumor cerebri - or idiopathic intracranial hypertension. It is causing some of my HAs. The docs at the HA clinic weren't sure how to treat it so they sent me to a neurosurgeon - Dr. Mark Luciano - who specializes in it. He is awesome.

Have u gone anywhere else 4 treatment? I am interested to hear how they treated your CSF leak!

Headache clinics r very common at major teaching hospitals.........hospitals that r affiliated with major universities. They r staffed by neurologists........but headaches r the only things they treat. When u see a regular neurologist in your town they treat a little bit of everything. But in these clinics, Headaches are their complete focus! This is awesome b/c there r usually many of them in practice together and they know about the new treatments for headaches. There r many different kinds of headaches and they r very knowledgeable about diagnosis and treatment. Many times u can even get in a clinical research trial if they do research on headaches there!

They aren't by "invitation only" U usually have to be referred there and have records transferred there so they can review them b4 u can get an appt. there.

So many patients go in there with rebound or medication overuse headaches. When u take too many meds 4 a headache, whether it is OTC or prescription..tylenol or vicodin, etc. u can make the headache worse than the one u started with. It can turn episodic headaches into chronic ones.

If u go in and r in a headache cycle they will try to break it..........often it takes IV meds......but that can usually be done as an outpatient.

Then they get u on a good prevention routine. They prescribe different kinds of blood pressure and seizure meds to prevent as well as supplements like Magnesium Oxide and Enzyme COQ10. I actually take an ALZHEIMER'S drug 4 prevention. It is not FDA approved 4 that purpose.......but 4 me and many others it is a life-saver!

Then they work to find a good abortive.........something u take when u get a headache. Most specialists will NOT prescribe narcotics, like vicodin. They can cause rebound. They prescribe things like Imitrex, Treximet, Relpax, Zomig, etc.

I was very fortunate and was referred very quickly to a headache clinic when I got REALLY sick with migraines. They weren't helping me in Pittsburgh so after almost 2.5 years i went to the Cleveland Clinic last August and I have gone from having 2-3 migraines a week plus some kind of headache every other day to having had maybe 9 in a year! I don't think I have even had to go to the ER for a really bad one because my med routine worked!

So if u aren't getting anywhere I would suggest getting to a headache clinic if u can!