misdiagnosed for 10 years with cluster headaches

Hi Pam,

Thanks for the response.  My problem is getting the neuro-gods to even diagnose me with occipital neuralgia.  They keep wanting to diagnose me with cluster headaches because of the involvment of the trigeminal nerve.  So I am not getting any effective treatment.  I show them signs, my symptoms and the facts but they just wont listen.  Its a living nightmare.

again, thank you for your response.

Rich

Hi Rich,

   It was a spine pain specialist (orthopedic surgeon who specializes in pain management) that diagnosed me based on my CT scan of my neck and my symptoms(took him all of 10 min). The neuro gods aren't all they're cracked up to be and I think they don't always look at the less common causes of headache and they sure as heck aren't very good listeners. Best of luck to you.

Pam

Hi Rich,

   I forgot to mention in my other comments that my neurologist took me off Neurontin for a month when I started having vision problems and started me on Topamax. I had 4 visits to the ER in Nov. 08 because the Topamax (or abscense of Neurontin) caused me to have headaches so horrific I said my goodbyes to my family. Felt like a grenade blew out the back of my head. Maybe your neurologist would consider trying you on Neurontin for your nerve pain since they do agree you are having trigeminal nerve pain. It also comes in generic which is a heck of a lot cheaper than Topamax. Hope you can get them to listen.

PamO

Well Pam, I'm on 50mg Topamax 2x/day now and it doesnt seem to be doing much good.  Its used to treat trigeminal pain specifically (though its intended use is an anticonvulsant) so the only thing it had done is decrease the amount of times I go blind in my right eye, but the pain is the same.

An interesting side note.  My pain had increased expotentially this past week to the point it involved my right TMJ and both my upper and lower teeth on the entire right side to the point that if I woke up dead one morning I wouldnt be too upset.  Day before yesterday morning I noticed the slightest of swelling in the cheek area.  I made an appointment to get to the dentist that day.  I had an abcess in the top right back molar.  A root canal was scheduled for the next morning...yesterday.  I am seeing vast improvments in my overall condition and I have no need for the pain meds. 

Now this tooth has been sensitive to cold for the past few years, but the dentists could never find any sign of decay infection or any reason for the sensitivity.  So I thought it was just a sensitive tooth, or part of my migraine symptoms.  If this abcess had been brewing for that long slowly, it could be part of the reason my migrraines were so severe, especially the last 3 or 4 years.  I dont have any false hope that my migraine will magically be gone, but cross your fingers and toes for me and hope with me that maybe they wont be so bad now.

Hi Nancy,

Thank you for your reply.  trust me, I was being extremely sarcastic when I called them "neuro-gods".  They are nothing more than self absorbed over paid quacks who couldnt find their backside with both hands, a flashlight and a road map.

I would absolutely LOVE to go to a specialist.  But again the problem is I cant get referred out of the system.  I am disabled and the state agency I worked for gave me Kaiser-Permamente as my insurance.  They not only are my insurance carrier, they are also my provider.  Imagine having auto insurance that also did auto repair and the only place you were allowed to take your vehicle for repair was to your insurances own auto shops.  Not a pretty picture hmm?  Being that I am on a fixed income I cant afford to just run off and write a check to go see some high paid migraien specialise myself that the insurance would refuse to pay for.

Jeepman,

I was diagnosed with cluster headaches 5-6 years ago, but they started in a milder form in the early '80's.  The repeating headache symptoms were much the same as yours and had progressed to the stage of nausea during some episodes, beginning in March and ending in November.  It was especially worse while trying to sleep at night.  It got to the point where I feared going to bed for what I knew I could expect. 2-3 times a night.  Finally, I was referred to a Dr. Rao here in NJ.  After a detailed consultation and review of my past treatment / failures she prescribed Verapamil.  I've had to increase the dosage once during this time, but it has been a life-changing event for both me and my family.  Verapamil is actually associated as a treatment for high blood pressure, but mine has always been low, ex: 105/75.

Hope this helps,

Dan

Hey Dan,

Thanks for your reply.  yeah the super quacks tried Verapamil on me too, but since my diagnosis of cluster headaches is wrong it didnt work.

I'm glad it did for you and you found relief.  Its nothing nice dreading going to bed.

I think it was for my headaches.  ITs been a while.  I had BP issues too for a bit.  Maybe it was for that, I dont recall now.  Either way it didnt affect my headaches hahaha.