DBS surgery for CH/CPH headache

I am writing about Chronic Paroxysmal Hemicrania, the headache disorder I have, and about the surgery that I had last year that stopped the pain. I have spoken to some people who suffer with headaches that are the same or have the same origin or mechanism of action in the brain and these people have requested that I tell them about my experience, so this is my way of doing so for now.

What are these headaches and what is the procedure I had? Regarding the treatment modalities and the targeted headache conditions, Dr Peter Goadsby states, (and I hope he won't mind my quoting him):

"Neurostimulation therapy involves the use of peripheral or central nerve electrical stimulation approaches for the treatment of medically intractable headache. Currently, for peripheral stimulation the main approach is that of occipital nerve stimulation, while for central stimulation deep-brain approaches with the target of the region of the posterior hypothalamic gray matter have been explored. Target conditions include migraine and the trigeminal autonomic cephalalgias: cluster headache, paroxysmal hemicrania and short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing/cranial autonomic features (SUNCT/SUNA), as well as hemicrania continua. The initial results are encouraging and given the very significant disability of medically intractable primary headaches, this is a very promising area for patients and physicians alike."

In my case, I have the 'central stimulation deep brain approach' implant. As for my opinion of what the headaches are, well, they are pure hell and torture to a degree I did not think possible. It hurts so intensely that there were times I thought the pain itself would kill me.

I am one of a few people in the world, to have this implant done for this particular headache condition... My intention is to inform others that are suffering about my experience with DBS, and perhaps to give hope. The neurological community is aware of the aforementioned headaches and they are working on treatment options.

For those of you who do not have this headache condition or the others mentioned by Dr. Goadsby, you cannot know how painful and debilitating it is. If you know someone who suffers from any of the above headaches, please treat them with dignity and understand that while there is actually not anything you can do to ease the pain during an attack, you can try to be okay with that and realize that you can help by giving your emotional support. It is a lonely condition and speaking for myself, what I most wanted and needed during the time I was having attacks was pretty much what anyone would want after being attacked and feeling helpless, vulnerable and invaded.

For me, the most difficult thing about explaining what it was like to have the headaches and why I had the DBS surgery is that, while there are indeed visible signs of the headache, how it looks from the outside is absolutely nothing compared to what it feels like from, literally, the inside. So I will attempt to give you a visual: It looks like some swelling of the face, a runny nose, a swollen, tearing eye, but to me it felt like the right side of my head had been blown off and the back of my head whacked by a two by four several times. Then there is the repeated stabbing through the eye deep into the head. I am talking about a stabbing that is exceedingly violent like overkill, when if it were an actual dull knife or stick stabbing me through the head, my eye, face and brain would have turned to thick, sticky sludge long before the attack was over, with nothing left to mutilate. The problem is that instead of the nerves being obliterated by a slicing and dicing attack, they remained intact to feel everything over and over and over and over again, ad infinitum. Imagine that and imagine these attacks happening over and over anytime during the day and night for years...

(These are attacks - it isn't constant. However, in my case the attacks lasted between two and five minutes with residual pain and tenderness, sometimes involving my right inner ear and my neck, and then the attack would begin again sometimes in as little as a couple of minutes, and at other times I just couldn't tell when an attack started or ended, it all seemed the same. My life slowed to a crawl and then to a stop.)

In an actual knife attack on the body the brain would release chemicals and whatnot that would either lessen the pain or prevent you from feeling it at all until the adrenaline wore off, but with these headache attacks there was nothing like that happening; my brain would just lie there, freaking out, and no medicine helped for very long, if at all, including nerve blocks and strong narcotics like Stadol. Several doctors tried every medicine in their pharmaceutical arsenal, but while there was improvement, there was nothing that truly released me from the pain.

There was difficulty getting help for the acute pain because I tried to cope with it and hid it until it was unbearable, patially because I was told it was stress or emotional - it wasn't. Even my instinct kept me quiet since I sensed that an outburst would make it worse, so trips to the ER when I couldn't bear it anymore had mixed results because apparently a person in intense pain is supposed to be freaking out, but like I said, something in my instincts made me try to stay calm. (I wonder now if that was an animalistic response to feeling so vulnerable, you know, like how you hear about how an animal doesn't show it is hurt and hides.)

Sometimes, albeit rarely, I would find myself on my knees, or lying on the floor losing my mind from pain after long hours at work, or sometimes after doing something as simple as going grocery shopping. But usually I would sit quietly alone, trying not to cry and utterly failing, rocking and holding my head with shaking hands during the worst of the unending attacks. Sometimes the agony was so great that tears would just pour down my face and I would beg God from the depths of my soul to make it stop. Apparently, he heard me...

It was 21 months of this violent pain for me until I had the surgery and on the OR table when they inserted the lead where it was supposed to go, somewhere around the center of my brain, and turned the neurostimulator on I had instant relief... (Yes, I was awake, but I do not remember much about the whole thing except for that moment) I have been asked why I would go through such a risky surgery and my answer is that I felt I did not have any other option. I certainly did not want to die, but I could not deal with the pain and did not know how to go on like that. As I have said, what looks like bravery on the surface, when unmasked, is simply desperation and the undeniable will to live.

Regardless of having the surgery, the isolation had taken its toll and I ended up losing a lot of 'stuff', my job, my home, my car, my possessions, but I also lost my dignity and my trust in people along the way. I was disgusted at how the self-righteous can be so incredibly obtuse, while I also felt humbled and amazed as I witnessed first hand how the actions of compassionate people can dramatically change and actually save a life. So I would have to say that ultimately I have regained my wonder and faith as well as finding strength and courage that I didn't know I had.

I currently am rebuilding my life, becoming involved in many activities I used to only imagine or dream of doing. Losing everything has allowed me to rebuild and redefine who I am and what I do. I am grateful beyond words that technology and compassionate medical professionals were there for me and that they continue to be available.

If you know anyone who has severe headaches or if you suffer from them yourself, or if you are a medical professional reading this, and if you have any questions for me, please ask, I will do what I can to help. jkrischicago@yahoo.com

Thanks for reading,

Ciao,
Kris