Monday, November 13, 2017

5 years ago was my 4th and final brain surgery

So basically. I had DBS. Short for Deep Brain Stimulation. 3x.

Why three times? Well. The first time after 30 days I woke up to puss running out of the insition where my pacemaker is. I knew it wasn't normal but wasn't overly concerned until I got to the hospital.

I walked into the hospital and said Hi, I had brain surgery last month, pulled down my shirt and puss was obviously running down my chest. Immediately they took me inside. Sadly emerg was busy and I ended up sleeping in emerg that night. Some 12 hours later they told me my surgeon would be in to operate to remove the DBS as I now had my right arm tingling and going numb.

They tested the puss and came back positive for an infection and said it would travel to my brain and I would die if it wasn't removed. 8am next day it was removed. Which was now surgery #3.

I was so angry because I was literally just starting to feel better. Any surgery I had resulted in 5-6 days in the hospital vomiting blood. Which happened to all 4 of my surgeries. I couldn't stop throwing up. It was only the 4th surgery that they concluded I was allergic to gravol. As soon as the gravol stopped. I then stopped throwing up.

Each surgery I felt like a Mac truck ran me over and left me for dead. It was the worst body and head pain aside from Clusters I ever felt.

Surgery #3 was my actual 40th Birthday. The big Four-Oh. Only my folks, wife and son had ever come to visit me for any of my surgeries. I have never formally been apologised to by anyone who never came to visit, let alone send a birthday card, phone call let alone a text. But oh well. Such is life. Sometimes a loss isn't a loss but more of a lesson.

So after they removed the DBS I waited about 8-9 months to have it reinstalled. Since I almost died all I asked was that it was after my sons birthday the do the surgery. And it was the very next day,

Sept 13,2012.

I puked my guts out for every surgery, felt lousy. It was no picnic. I often thought how do 60 and 70 yr olds handle this surgery for Parkinson's???? I was 40 for my 3rd and struggled immensely.

They tell you what happens during surgery. Not after or what was going to happen.

I regret the surgery despite having 100% confidence It was going to help me.

After the 4th surgery for the next 2,5 years every 3 months I would see the surgeon for programming.
I never got relief.

At 2,5 years I turned it off and started using magic mushrooms to treat my cluster headaches. It has saved my life on numerous occasions since. In fact. I have my GP, neuro surgeons blessings that I use it. Many medical papers have published facts on this. It is not hokey pokey made up medicine.

In fact. You would not be reading this if it wasn't true.

Sadly since my last surgery, I been experiencing these things daily and it has ruined my quality of life.

  • head/neck pain without remission. Started 2 years ago. 24/7
  • PTSD
  • nausea and vomiting
  • ears ringing, vertigo
  • radicular pain
  • nuero weirdness
  • disorientated
  • dizzy spells
  • severe short-term memory loss
  • lack of sleep. Can't stay asleep

This is the primal list. Its much longer but almost every month something new pops up. None of these things ever happened to me before. Only chronic migraines and chronic clusters.

The quality of life I have experienced since surgery sucks. No other way to define it. I get asked all the time. Should I have surgery? My answer is the same. Read my experiences, draw from that. I would never tell anyone not to have it or to have it. It is a personal choice.

In fact. a dear friend of mine in the UK who is the strongest advocate for Parkinson's I know had DBS for his tremors and it helped him immensely. He has had good success and a better quality of life with the aid of DBS and marijuana.

But for me personally. It has ruined the quality of life I have. I could care or less if any medical professional tells me it's not related. I live with this. My life is more than appointment.

This blog today isn't meant to be negative. It is a reality for me.

So if by chance you think I am a little fucked up, or ssay and do fucked up things....chances are I do and am.

Sunday, November 5, 2017

Imagine being sick, now imagine being homeless

The title speaks volumes, doesn't it?

Tuesday, July 25, 2017

12 years ago today I got sick-recap

Hard to believe that 12 years ago today was my first attack and my life would change forever.

To think, all I have been through in 12 years. It's crazy.

NO ONE could have prepared me for what was going to happen. Now, today. not too much surprises me anymore.

Let's review and reflect on 12 years.

Sunday, June 25, 2017

1st time ever Medical Marijuana prescribed !

If you have read this blog before you already know I live with a bunch of things. Cluster headaches, migraines, tension headaches, PTSD, IBS-d, anxiety, exzema, and sciatica.

Thursday, June 1, 2017

Monday, May 8, 2017

People In Pain VLOG Living in chronic pain positively

Back in November, I think I started a daily VLOG on YouTube called " People In Pain" on my YouTube channel "ClusterHeadSurvivor" (no spaces).

Thursday, March 23, 2017

Support Bill Greineisen's 24 Hours Race in Texas for Cluster Headaches

Wow, how do you thank someone?

Really, to even be thought of let alone raced for I am truly humbled. I am at a loss for words.
And I guess from what my wife tells me, all the hard work I been doing with the blogs, vlogs, logos, awareness and advocacy is starting to come to fruition or is continuing thereof.

Tuesday, March 21, 2017

#UnderTheHat day....March 21.

#UnderTheHat day....

Today is hashtag Under The Hat day.....What does this mean? it means one day a year we as survivors of the world's most painful disease acknowledgment for something that affects us so deeply.

Chances are you are reading this after today March 21. But every day we live with this incurable disease that has taken the lives of so many.

Sunday, February 26, 2017

100 VLOGS, consecutively I did it

Thank you for reading this blog and watching my daily VLOGS. It is a struggle to film something everyday. Some Vlogs are short, some longer.

Thursday, February 23, 2017

Sunday, January 8, 2017

#HOMELESSMATTER .... The Homeless Matter

Why am I blogging with a vlog about the homeless?

It could have very well happened to me and you. I have seen with my own eyes people I used to work with living on the streets. Factories close, people lose their home because they can't pay their mortgage or rent. Marriages fall apart due to job loss, health, addiction, mental health, and getting sick like me. And yes people can become homeless for some of those reasons.