Hi. I was recently diagnosed with cluster headaches. I have had migraines since I was 13, but they usually occur with my period or severe amounts of stress. I have also had sharp pains in my eye since high school but they occurred only once or twice a week. For about 3 years I have had a headache everyday. Until the last 6 months the headaches came and went throughout the day. Now the headache is there about 90% of the time. The time when I don't have pain is very early in the morning right after I wake up. Because the pain has been worsening for so long, and is now constant, I am not sure that I have cluster headaches. I was only diagnosed a month ago.

Does anyone else have cluster headaches that last all day? I have tried oral imitrex, zomig, topamax, fioricet and none of them did anything for this pain in my eye and on my cheeck, they have only helped my classic migraines. My GP thinks I may have trigeminal neuralgia and another neurologist suggested I have an irritated nerve. What do you all think?

Mods, close if you don't allow these types of threads. I am new here.

There are things you describe that make it sound to me as if it isn't CH.

But hey that's probably a good thing.

Seems to me I've seen some others also asking about this type of pain on here. Hopefully someone will happen along that recognizes it or has somewhere to point you. I really don't think the moderators will have any problem with your post. They're cool.  8-)

Cheshire wrote on Oct 19^th, 2009 at 9:31pm:

Mods, close if you don't allow these types of threads. I am new here.

On the contrary.

Welcome to CH.com.   :)

All the best,

George

Hey Cheshire,

I also have migraines and Clusters,  one of the lucky ones.   :P  I was told by Peter Goadsby, neurologist extraordinaire, Migraine and Cluster Headache specialist, that a background headache that I have often throughout the day is not uncommon for those that have both types of headaches.  Many with just Cluster Headaches have headache between the hits, too.   
I wanted to ask you if your headache that you have most of the time is lower level?  My clusters spike at different times of the day - say I have a headache at a level 4 out of 10 most of the day.  I can have a handful of headaches that range from 7 to 9 on the scale that last anywhere between 45 minutes to 3 hours unless I abort them right away that only go back down lo level 4 in between.  I guess this isn't uncommon for people who have multiple primary-type headaches (migraines and clusters) according to Goadsby.

If you are unsure, get another opinion!  It couldn't hurt.  Ask if the neurologist/ headache specialist has treated cluster patients before!   ;)

Just my opinion/ experience!!  Sorry you had to join us, but welcome!

Val

I am definitely going to get a second opinion. My internist diagnosed with me trigeminal neuralgia but the neurologist said it's CH. My pain is there almost all the time. I've never had my eye tear or nose run, but my eyelid is droopy on the painful side. So I am not sure if that is typical of a CH sufferer. I think I have trigeminal nerve damage. The pain spikes are gradual and crescendo over time, and they also don't come at the same time everyday. Everything I've read about cluster headaches is that they're "alarm clocks" that go off at the same time. This pain has been getting steadily worse for many years and is now almost constant. The prednisone hasn't done anything for the pain I'm having right now. I personally think I have atypical trigeminal neuralgia, which I am grateful for. My pain NEVER comes out of nowhere, it just varies in intensity.

Thank you all so much for your empathy. It's nice to know I'm not alone.

It's possible that it's trigemnal neuralagia.  I suffered that last December, when I had a cycle that was thought to be suppressed.  I'd taken Methergine for a week, and the CH went away, only to come back again several days after I stopped taking the Methergine (sort of like what happens to me when I take Prednisone for CH).  I was put back on Methergine, and a few days later, I suffered about a 2 hour long Kip 10 attack, that literally had me screaming (the next morning, I woke up hoarse from the screaming).  My abortives didn't work at all. 

My Neuro said I had trigemnal nueralagia.  I was put on a couple of very heavy duty meds I had to take several times a day for a 2 day period (I don't recall what they were, but I do remember that one them was normally used as an anti-seizure med).  The meds did take away the neuralagia, to the point where my CH settled down (I was also kept on Methergine for a month).

Nevertheless, trigmenal neuralagia is not that common.  My neuro is both a proffessor of neurology for the Medical College of Wisconsin, and a board certified headache specialist.  So, I took her word for a diagnosis (especially since she's been able to deall pretty well with my headaches, as they've changed over the years).  But, an internist isn't a specialist on neurological conditions.  Since both him, and your neuro have differing diagnosis, yes, it would be wise to get another opinion.

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

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Hi Cheshire,

I can only speak for me but after many appointments with Prof. Goadsby, I can tell you that some of us DO have constant pain.
I can be confident in that because Peter Goadsby put me through so many tests and drug trial, scans and procedures that eventually he decided that it was Chronic Cluster with no appreciable period of remission throughout 24 hour periods.  That said, my pain will sometimes 'quieten' down to a 5 - 7 on KIP, but most of the time it's ravaging me on 9's and over.
However, what tests did your Neuro give you?
It took Peter Goadsby many appointments at ION over two years to conclude it was Cluster.  Have you had the Indomethacin test?  Have you tried Occiptial Nerve Block? Any IV Lidocaine planned? Have you been given a go on High Flow O2? These appear to be standard therapeutic and diagnostic avenues in the UK
If it is Cluster and the pain is unremitting then it still isn't the end - I'm still here after 8 years with the demon.  I've gotten bruises where I smash my head to try and beat it; I've lost count of the calories I've burnt pacing up and down (see even for us there's a good side!), My wife knows the house is safe at night - I'm usually in the garage walking, crying and trying to control this demon.  But that's the point, at the moment I can't evict my demon, my job has gone, my social life doesn't exist.  But I've found that I have a small group of real friends, I've found strength in the love of my family and I sure as hell don't let it beat me completely.
I only joined CH.com a few days ago and believe me the strength I'm already getting from 'meeting' like sufferers is like a 'blanky' for a child and if we can help listen to each other, give advice on how we cope, explore new avenues then together we'll make a difference to all cluster sufferers everywhere.
Andy

My new neuro thinks I was misdiagnosed with cluster headaches. He diagnosed me with trigeminal autonomic cephalgia. Now we are trying different medications to see what works. I tried indomethacin and verapamil without success. Now I am starting on topomax (again). My pain is constant and fluctuating. I think I have atypical trigeminal neuralgia. A couple times a week I have a classic TN attack (lightning strikes of blinding pain in my face). The rest of the time I have parasthesias, burning, crushing and pressure sensations.

Thanks to everyone here for your support! I am very thankful not to have CH and my heart goes out to all of you.

exmed1 wrote on Oct 21^st, 2009 at 3:30pm:

................ my pain will sometimes 'quieten' down to a 5 - 7 on KIP, but most of the time it's ravaging me on 9's and over. ..................... Andy

Wow. Just wow..........I didn't think that was possible with CH's.

You have to be the toughest person I've ever heard of in order to endure K9-K10 continuously.

I know with absolute certainty that I wouldn't make it.

Marc