Hiyas. Headache is abating a bit right now and I can type!

Not sure, but I think I have been mis-diagnosed. Regular doc said it was a sinus infection and put me on antibiotics for 20 days or so. Feel great but still get headaches.

Sent me to get an MRI, normal.

Sent me to a neurologist. He says I have Trigeminal Neuralgia based on my symptoms. I took a look at some TN sites, and it just seems wrong. I can describe em briefly:

-Come on whenever the hell they want. Last from 30-90 minutes. Almost always at night and they wake me up typically 2 hours on the dot after I fall asleep.

-I have a sensitivity in my scalp right now, this is brand new to me. It is tender? Hard to describe. Is on the right side, same side as the headaches. Like a sunburn..grr, tough to describe.

-Lots of pressure in my head, again on the right side. Seems like sinus pressure. I do the pinching my nose and making my ears pop thing a lot =)

After reading some sites and reading the message boards, it seems like I am getting cluster headaches, but my eye does not water. My sinus on the right side seems to close, feels like I need to blow my nose badly, but there is no real drainage and my eye does not tear up. Pain works its way around my head, feel it a LOT in the temple, but also top of the head on right side, cheek a bit, upper teeth feel very uncomfortable. It does supersuck, no other way to say it. I pace a lot and use a heat pad. Don't think it does anythign, but the heat feels nice =)

Rambling, apologize. Anyways, I seem to have more symptoms of someone who has cluster headaches as opposed to TN. Anyone else have any tenderness in the scalp/forehead?

Also, I dont want to doubt my neurologist...I mean, he is a brain surgeon. How cool would that be? 'Hey buddy, what are you? Some smart ass brain surgeon?' Why yes I am. But, I think he missed on this one. As much as I want to not piss anyone off or insult anyone, these headaches suck like nothing has ever sucked before and I have been shot.

Sorry for long post, sort of pouring heart out. Do I have Trigeminal Neuralgia or do I have Cluster Headaches? Oh, and don't mention this to the wife, she is upset that I am researching and tells me to just take the pills the doctor gave me and deal with it.

it is my understanding that trigeminal neurlgia ia a fancy name for ch
but yes you need to get o2 , some energy drink with 1000mg taurine and high caffiene.
ice works better for me. stay away from narcotics and the over the counter pain relievers like tylenol, advil, and aspirin. they will end up causing re bound headaches which are nasty in their own right. besides they won't usually touch ch attacks.

other will give you more effective info than I, but there are a few ways your  neuro could go. thats abortive treatment, transitional and prevenative.

First, the textbook description of CH (and most other disorders) is an ideal, covering all the bases. It's common for any single individual to have some variation. One of the reasons that making an accurate Dx difficult.

Second, the neuro may be a god in doing brain surgery but still not have the skills to handle complex headache disorders.  We have lots of experience on this issue and so I'd suggest one or both approaches.

Print out and use this list of treatments to discuss options with this doc. His response will tell you something important about how he operates.

And then a section on how to find a headache specialist if you decide to look at your options.
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
========
========

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Looks like Carbatrol may be used in the treatment of trig neuralgia        Carbatrol (CAR-ba-trol) is used in the treatment of all types of partial seizures and in the treatment of generalized tonic clonic (grand mal) seizures...............havent seen anywhere used to treat CH..........................I like you was treated for a sinus infection for over a month, it was when i was given a prednisone taper, of about 5 days worth  that i noticed it would be gone..and as soon as day 5 came SLAM....................and that is when i started researching and found this site.....and basically diag myself.........have you tried prednisone? Many take saya 20 day pred taper, while they are waiting for their maintenance meds to take effect..............also energy drinks, eg, Red Bull @ onset? I am now taking elavil @ bedtime, which is working for me, tho i know no one else who take it..........................any ?'s feel free to Pm me................pain free wishes coming your way!
deb

Sorry add on message

Carbatrol is carbamazepine- the standard treatment for TN. Low dose start- build up until pain relief is achieved, then reduced and weaned off after a couple of weeks after pains have stopped

It may not work straight away and may well be worth trying in case the neuro is right and it is TN???

W the B

To be honest Koops, painkillers aren't usually an answer to anything, and are usually pretty hopeless for any of the one-sided headaches.

The correct diagnosis is the most important thing, then the right treatment

Are you saying you have constant pain, which then has sharp, shortlived attacks over the top?

If so, how long do the "spikes" last?

W

Koops

If I do a summary here of symptoms could you try and see if you think they fit without MAKING them fit. I know you want to give your headaches a name, but it matters to get this bit right.

1 The pain occurs on one side of the head. Although the pain will vary in intensity, it never completely disappears and tends to be mild to moderate with occasional periods of intense pain
2.Pain may occur as short jabbing jolts alongside the persistent daily headache.
3. Some or all or the following may also exist:
Throbbing pain
Nausea or vomiting
Sensitivity to light
Sensitivity to sound
Tearing eyes and runny nose
Drooping eyelid
Redness on affected side
Brief bouts of intense pain on one side


W the B

possibly taking melatonin @ night may help...............it helped me while on the pred taper and b4 the elavil................yes, when being hit every 1-2 hrs, the next day my scalp would hurt if i even ran the shower on it!.like others know, i wore a hat for the better part of 3 mths until i got something to help................it just seemed as if a snug hat made me feel better............... ...my teeth would ache first, many times, even so i even went to dentist b4 knowing what i had!   KUDOS to Wendy for the summary of symptoms! add to that...if u r a drinker, does the tiniest bit of alchol promote an attack? did for me, but so far, can drink my wine on elavil!!!! keep the faith!
deb

Thanks for answering all the questions Koops

Not going to try to diagnose as I am not a Doctor- just ruling out some obvious headache types and checking some not obvious ones.

For what its worth, I think the title of your first message is probably right.

Is your doctor a headache expert? Or even a neurologist? A neuro is a minimum requirement and really they should specialise in headaches to be any use as there are over 600 different headache types and a general neuro quite often is not clued up enough to diagnose properly.

I am STUNNED, given your symptoms that your doctor has not tried Indomethacin immediately. It is cheap, not dangerous and can resolve many one-sided headaches in literally days.

I would really strongly suggest you ask to try it, I think you can take it alongside your Carbatrol but check this first.

If you can get the Indomethacin from your GP, I really would try it for a few days. If it hasn't completely removed your pain after a week, stop.

If you really can't get Indomethacin, a lesser substitute but may still work is one of the other NSAID's - non steroidal anti-inflammatory drugs. You may have already tried this, but if not, I urge you to do so.

I am not from your country so I can't give you brand names but whatever is the most powerful NSAID you can get without prescription. Try it for a few days with or after food and you may find you get relief.

If this and the carbamazepine are not working, your Neuro's diagnosis is definitely WRONG and you must make them think again

Hope all this helps, keep us posted with how things are going

W the B

got that wendy,for there are some symptoms on there i dont have! i kinda thought i knew what u were doing!!!!

Hi Koops,

Your pain sounds very similar to mine during a cycle.  During a hit, I have very intense pain that seems to throb in a strange way. It is a pain that  just escalates till I am sure that with one more pulse it will kill me then it goes back to just unbearable. Then it'll all just start again.  I feel a lot of pain in my cheek and in my teeth as well.  I find some relief using ice packs on my face, back of the neck and the top of my head.   In between hits I also have a very sore scalp.

I am not a Dr. either but your pain sure sounds like CH to me, sorry to say.

Others have given you great advice about finding a Dr. help you.  Learn as much as you can so you can be prepared to help your Dr. with a treatment plan.

I hope you are pf soon.

Jeannie

Alot of people here don't like when people say this but....YOU HAVE CH!!  You're doing the research, now you need to find a doc who will listen to you.   All of your symptoms appear CH to me and I think you would agree.  I would only take those other pills til you can get yourself proper CH meds. 

In the mean time....here is a trick for you to try.   When 1 starts to come on, jump in the shower and make the water as hot as you can stand it.  That will help soothe it  (well it does for me).  Then turn the hot water off completely.  Stand under the cold water as long as you can.  You can go back and forth with the hot and cold but its the cold water that get abort the attack for me.  I have had alot of success with this.

ALSO......get yourself some energy drinks like red bull.  Must have Taurine 1000mg.  first sign of attack, guzzle the SOB. 

Work on the doctor aspect and let us know how you make out