Trigeminal Neuralgia and cluster headaches

Is there anyone out there that endures either of these conditions? I have had CH since High School due to head trauma from abuse. The TN was diag in 2006.  Pain is under control with

meds.  However, i have noticed that since repressed memories have come back the clusters are worse. Definately related.  Looking to see if anyone has/had same experience or similiar.

Thank you very much for the warm welcome!

 

bnot,

not familiar with that particular ailment, but i feel bad for you. hopefully others with it can give you some direct answers. hope it gets better for you at some point, that's a lot to deal with.

david in sc

Hello don't and welcome to the forum. I've had some closely related experience as I had encephalitis in 86,in a coma for 3 days and awoke with a huge amount of hearing loss,big gaps in memory and the worst headaches imaginable.

For years after I battled headaches almost daily and as my memory or pieces of it returned the headaches became more intense. I saw so many Drs from Neuros to holistic and though they all tried nothing seemed to lessen the intensity or frequency of my headaches.

The only break I found was during pregnancy? I seem to have less headaches and a drop in severity during my 2nd and 3rd trimesters. Really made no sense to me but I certainly couldn't stay pregnant forever.

Finally had a change in insurance and had to see a new pcp. This fellow was a child to me,didn't look old enough to have had 12 yrs to spend in college. He referred me to a specialist at the University hospital who worked with patients who suffered TBI-traumatic brain injury. He told me ' the virus from the encephalitis actually attacks the brain causing damage in traumatic degrees therefore this was my best bet for treatment.

It took months to actually see the lady but the difference it made was astonishing. She did various tests and labs and some that made no sense but in the end she cut my migraines or whatever kind of headaches in half.

She said that when parts of the brain was injured that's loss of whatever functions those parts no matter how small were responsible for. She explained the increase in pain from memories resurfacing as very hard work for the existing parts of the brain and stressful for the CNS.

Once she could determine by testing and history what parts of my brain actually suffered we began maintenance therapy for what we could. I had a hormone insufficiency due to damage to or loss of cells or areas that not produced hormones but played a role in regulating hormone balance, thus explaining the pregnancy issues.

I was started on HRT. Also was having issues with K+ distribution and each of these were dealt with by meds and dietary supplement and I was like a new person.

The new age nerve meds such as lyrica were not heard of but now they use those as well. Elavil was however useful as well as a low dose Valium and Inderal. Once we got it all worked out I felt so much better.

I never regained all my memory or any of my hearing but the TBI treatment worked and I'm forever grateful.

Im hoping that my story can point you in a different direction and possibly find help as I did. Even though the treatment and theory back then was riddled with skepticism from much of the medical field its great that some of the young new Drs were willing to try cutting edge theories and today those theories are based on facts.

Sorry for the length but it was a long and frustrating road so I wanted you to understand the key points.

Good luck to you and never give up the search for answers.

Not true about the characteristics of CH. As I have had thousands and done a great deal of research, I can state the following are characteristic.
1. Pain is of much shorter duration than migraine. about 20min-1hr
2. Pain is specific to the region around one eye (sphenopalatine ganglion)
3. These are usually, but not always unilateral. Mine was always on the right side
4. Pain is usually described as the sensation of an ice pick stabbing the eye
5. There is always lachrimation (tearing) and reddening of that eye
6. Lots and lots of mucus during the attack
First, go to clusterheadaches.com for more information
Here are some things I found useful
• short course of Prednisone concurrent with Botox treatment to the forehead area. This is done by a neurologist, not a plastic surgeon
• oxygen at a fairly high flow and a non-rebreather mask. Have forgotten the flow, but you can look it up. This only helps CHs around a 4 or less on the KIP scale
• Imitrex injections. Always work. I think I took 6mg, but you can look it up. The pills and the inhaler were useless for me. The beauty of the injections is that they take effect in less than 10 minutes. With any other drug or method, the CH is almost done by the time the drug crosses the blood/brain barrier.

It's not for nothing that it's called the "suicide headache." I won't own a gun for that reason. The amount of pain has been described as the third worst a person can experience while still remaining conscious. I believe it.
I really wish you the best of luck. I don't know how old you are, but perhaps you have something like my 3 1/2 year remission in your future. And look into the Imitrex and the Botox.