Trigeminal Cephalalgia Neuralgia aka Cluster Headache Suicide Headache Worlds Most Painful Disease: Personal Update

Hello. I have not written in awhile. Its summer time and since I loathe any cold weather I do my absolute best to be outside as much as possible. I love 1 season...summer and hot.

I go see my neurosurgeon July 31 for programming. I think his secretary forgot about me because I am supposed to be reprogrammed every 3 months. I emailed him and within 2 days got an appointment. I am very much looking forward to discussing my side effects (weight-lack of libido) and headache schedule. I keep a fairly well detailed log of my headaches.

I have noticed for many reasons I have become quite recluse. As much as I love being home and puttering around the house when I feel OK I usually head out for car shows and cruise nights since my son and I are "car guys".

It was ironic as I was sitting with my wife and son at the last show we went to and I was discussing how my wife's eyes needed to be checked because she is far to kind to tell me how much weight I have gained and how lousy I feel about it but as much exercises, dieting, and calorie counting I been doing I just keep gaining weight. She is far to kind to call me fat but I know looking in the mirror what I am. I hate being this weight.

Within 5 min of that conversation we started to walk around this show and I ran into 4 fellows I worked with at a factory. 3 have seen me periodically over the years and the 4th had not seen me since I was diagnosed in 2005. He looked at me and said "Holy F*ck you got fat! What the hell happened to you? How did you let yourself go? Jesus your f&cking HUGE...." and continued. As I tried to get a word in edgewise I looked at my wife and her jaw dropped. Not only do I know what I look like and how I feel, the sheer audacity of someone being so bold,blunt and rude pissed me off. I pointed at my arm to show the tattoo and try to explain and all I was able to say was "I'm sick", and his response was "what sick of ink?". I know working in factories, some not all have little education, no etiqute or cooth and little common sense. I got mad and told him to BLANK right off and walked away.
It really bothered me the next few days. I wasn't mad at him. His delivery was bad. But he is right.
Trying to explain at a car show as music is blaring,cars driving by that the nuerostimulator operated by my pacemaker causing an over active hypotamulous is absolutely USELESS to explain that to someone with no common scene.

I ran into one of the other guys who was standing there as we all listened to his insults and he said "he don't know your sick". But seriously. Even if I wasn't was calling someone weight names justifiable?

Any cluster head will agree when we have our "down"days it sucks. We are fatigued, tired, exhausted, stressed and wiped out. Getting dressed can be a chore after a 2+ hour attack.

I have also lost friends over the years due to my disease. COWARDS bailed on me. Either didn't believe I was sick, thought it was 'Just a Headache" or just to self absorbed in there own minuscule dull lives to remotely care of someone Else's well being. My wife and I both agreed how pathetically sad it was to have not 1 but 4 brain surgeries and not even get a get well card let alone a call or visit from 25+ year friends but I myself visit strangers in the hospital who have DBS surgery like I had to show encouragement and support for others who are suffering.

Its amazing how a simple call,visit, email, text, or whatever can mean so much to someone in need.
What I have benefited is from absolute strangers who do reach out and contact me globally to see how I am doing. People I have not nor will I ever met, write to me all the time. Its not only appreciated but inspiring to continue my journey in helping others. I sincerely hope one day i am able to star a foundation. That is a legacy Id like to leave. I think I just have to meet the right people one day. If I have any legacy it would be that I was able to help others and be an advocate for others who are afraid to speak up.

I get emails, comments daily calling me "hero". Which in fact is farthest from the truth. My wife and son are hero's to me. Any spouse or family member who is there for a sick loved one are the hero's. They watch is suffer daily. It has affected there lives in more than one way with work, social and emotional and physical well being on their own. My wife and son deserve far more praise than anyone gives them. They live with this too. I admire them both so much. My wife has medical issues as well as my son. Neither bitch or complain. They are troopers. They are not only my cheering section, they are my reason for living another day.

I constantly try to write to people to look out side the box. Even yesterday I read and replied to a person who had tried to commit suicide. It affected me deeply as I was there in Dec 09, and if you would have asked me then if I would be where I am today I would have said your crazy and it will never happen. I am still very sick. I still get attacks. But I am alive and feel alive inside. Positive mindset helps, ridding myself of negative people and things in my life helped dramatically. Not dealing with mean, nasty, people. Surrounding myself with love, happiness helps each day I live.

As of recent my quest and journey has been to contact Dr.Sanjay Gupta. I have had zero success thus far. I will not give up until I hear "not interested". I do have faith with the right contacts I will be successful in my journey to spread awareness. On many Cluster Headache forums I been self elected and cheered on by many to be "the poster boy" for this disease. I lost my vanity along time ago and the disease needs a face. If its me great , if not as long as I can support the person who is, be apart of finding a cure, helping with research and spreading awareness. This is my purpose.

My dog Buster whom I have written about many times is getting over a nasty ear infection. It seems every week he is at the vet. I have become so close to this dog. He is my shadow. He was barely 9lbs when he ended up on our lawn in November 2012. He was bony, very sick, full of fleas,on verge of dying. Going blind and deaf we brought him back to life with love, now 14.7lbs, and the best dog. He still has multiple health issues we are dealing with (Thyroid now) and more but I can not imagine my life without him. He has been beyond therapeutic for me and my recovery after surgery. It channeled my energy on helping him and not myself. Kept me focused on keeping him alive and getting him better. If we had not taken him in,he was days from being dead. Or Animal Care and Control may have euthanized him because chances of a very sick dog getting adopted were slim to none. Again, I would love to thank my vet. Dr.Mor at East London Animal Hospital for helping "Buster" on the road to recovery. This man has stepped up way beyond any veterinarian. He is kind, and very compassionate. My family and i maybe responsible for giving Buster a home and rescuing him but Dr.Mor is responsible for keeping Buster alive, and healthier. Many blessings Dr. Mor.

I also recently had done by a very generous tattoo artist, a large arm tattoo of my head, my pacemaker and the medic alert symbol on my arm with the words Deep Brain Stimulation. Since I am a former Barber, I thought the barber pole was a nice touch in the medic alert sign.